daisy dots

Update

2012-01-31T01:05:00.000-08:00

We've been driving... driving people nuts.

I called all my doctors last week to ask for copies of my records which I have to hand carry to the Mayo Clinic. Sounds like a simple request right? I called on Monday and told them I'd be in on Thursday to pick them up.

Thursday comes around and we start collecting... stopping at each office... getting hugs from my doctors and nurses as we went on our way... most came out and said hello when I got there... wished us luck and said,

"Have them fax me the reports."

Two of the offices weren't ready... for some reason... the copies had been lost... or never copied... or flown off in a balloon to Oz. We explained how it was necessary to have them by Monday. This morning... first thing after I called my insurance company (yuck... still dealing with that) I called the two late bloomers. One said it was in her drawer. I could come in any time... and the other ... well here's our conversation.

"Hi, This is Rachel... I just wanted to make sure that you had my records ready to be picked up today."

"When did you request them?"

"Last Monday, You were supposed to have them by Thursday... when I came in you said that it hadn't been done yet. and you were understaffed... Remember?"

"I show that we had them ready on the 26th. And you didn't come in to retrieve them so they were destroyed."

"Thursday was the 26th. I was there. You said you didn't have them. Could you please make me new copies?" I said... trying not to let my mouth fly... and really give her a piece of my mind.

"Well I guess we can do it again for you.." she sighs angrily.

"Seriously!?!?! I was so frustrated... I HAVE to have these records for my appointment... I called Monday morning... gave you a couple days to get it together... you didn't have it... then you blamed me for it... and now... you are acting as though I am inconveniencing you?!?!? My mom had driven me up TWICE! And I have dragged my weak body all the way down the long hall to your office... no... you aren't going to guilt me!" I thought to myself... trying my hardest not to rip into her.

The whole way there... I prayed that the "mean office lady" wouldn't be there... and that the nice one would.

THANK YOU LORD! My prayer was answered. I walked in... and "she" was no where in sight. I spoke with the sweet lady who is always so helpful and cheerful :) and she printed me off two sets, one for my keeping and one for Mayo.

After I had gathered all of my papers... I got home and started organizing them... and reading them.

Wow... so sad.

It's really hard to read progress reports that say,

"Patient's strength has significantly decreased in the past two weeks and reflexes are diminished."

I read through the entire stack. paper by paper. At times completely forgetting that they were writing about me... and feeling really sorry for this girl that the doctors refer to as "pleasant". These were my symptoms... these were my tests... but for those moments... I forgot.

I felt really sorry for her.

My heart breaks for her.

Most of the time... I am so far away from "her" and I try to be so focused on other things... like how Great my God is. How blessed I am by my family... friends... butterflies...flowers... hummingbirds... and my kitty... that I don't let "her" into my mind.

Wednesday morning my mom and I leave for Arizona. For the next one to three weeks... There will be no escaping "her" it will be poking and prodding... paper napkins and fabric gowns.

Please pray for "Her".

I don't want ~~"Her"~~ my heart to be discouraged.

xoxo-me

P.S. Listen to the first song on the side.. I found it on Pandora a couple days ago... and I've been thinking about it ever since...

"Whatever's in front of me help me to sing Hallelujah!"

rain

2012-01-24T02:07:00.000-08:00

Isn't it funny how rain seems to make everything fresh and new?

This morning I had the unpleasant task of contacting my insurance company and all of my current doctors. I dread the phone... absolutely dread it... I knew... first thing this morning... I had to call. I pulled my phone out grabbed my notepad and called... each time praying that I would have the strength to say what I needed to say... So I could get the help I needed to get.

I was thrilled to watch the rain drop, from the palm trees out my window, as I was on the phone... trying my hardest to hold it together. Within an hour... all the calls had been made. Now I sit... and wait to see if my disability extension claim will get approved. It hurts my heart to think about all the dishonesty that happens with disability insurance. It makes it extremely difficult for those who truly need it.

It really hurts.

Today my wonderful dad started to install grab bars in and out of my shower (well he hasn't finished the inside one yet... but the outside is done)... So that I wont fall... I couldn't be more grateful. That has been one of my number one frustrations.

Chatelaine and I have been spending plenty of time snuggling and watching the rain... I'm going to miss her like crazy when I head to the Mayo.

I've been making good use of my handicapped placard and I have enjoyed my ocean front parking space :) My mom and I have driven down a few times, sat in the car and eaten lunch... I couldn't ask for a better view.

This afternoon I got a call from one of my nurses... but the funny thing was... I wasn't expecting her to call. I've never met her. I don't know her. But my phone said "Mayo Clinic".

We talked for about a half an hour. She is my coordinating doctor's nurse. Slowly we discussed all my worries... like continuing with physical therapy so I don't loose strength... my weakness... and my ever changing broken body...

and she was amazing. She gave me her phone number if I had any more questions... which I already do... I will call her tomorrow.

My heart sang.

I can hardly wait to meet her.

Tonight, I am ~~slightly regretting~~ trying to look forward to the plans at the Mayo for continued Physical Therapy... as I lay sore from today... but I know that it is for the best. I've downloaded some new songs to help me relax through the testing that I've been promised to go through while in Arizona... it is going to be torture sometimes...

The Lord Provides my every need, even if it's the slow drip, drip, drop, of the rain while I make my calls... Now, I'm just waiting to see my Rainbow.

xoxo-me

Fourteen

2012-01-22T23:34:00.000-08:00

My legs wobble back and fourth as I raise and lower them. Slowly I count... watching every step I take. While focusing, on pushing over my big toe, I pull on the handrail... Trying so hard... Trying to get there.

Today was a rough day... A few of my symptoms that I thought had "gotten better" came back with full vengeance throughout this past weekend. I suppose that such return is the course of this disease... this unknown... This horrid... horrid thing.

The displeasure of my current state overwhelms me. I want a day off. I want an hour... I want to be able to walk up those fourteen steps to my room... who am I kidding... I want to dance up the stairs.

But for now... I am stuck in this broken body. I don't know why God has allowed this.

My goal has been, and will continue to be, to Glorify God in all that I do.

No matter what tomorrow brings... I take comfort in knowing that I have Christ.

I once was lost in darkest night
Yet thought I knew the way.
The sin that promised joy and life
Had led me to the grave.
I had no hope that You would own
A rebel to Your will.
And if You had not loved me first
I would refuse You still.

But as I ran my hell-bound race
Indifferent to the cost
You looked upon my helpless state
And led me to the cross.
And I beheld God’s love displayed
You suffered in my place
You bore the wrath reserved for me
Now all I know is grace.

Hallelujah! All I have is Christ
Hallelujah! Jesus is my life

Now, Lord, I would be Yours alone

And live so all might see

The strength to follow Your commands

Could never come from me.

Oh Father, use my ransomed life

In any way You choose.

And let my song forever be

My only boast is You.

Hallelujah all I have is Christ

xoxo- me

running

2012-01-16T10:03:00.000-08:00

As I stood in the field filled with daisies, I could feel the warm sun shining on my back.

I ran for just a minute, arms out and head tilted back.

Pretending I was Maria from The Sound of Music.

Spinning in circles.

Round and Round.

My sister and I sat down and had a picnic.

With the best cucumber and cream cheese sandwiches a girl has ever seen.

I couldn't help but be happy.

It was perfect.

The birds were singing

A butterfly gently landed on the flower next to me

Slowly opening and closing it's wings for us.

Hummingbirds were drinking from the Foxglove in the distance.

As we started to enjoy our cheesecake

It began to sprinkle.

With giggles rolling like waves

And some squeals about the tears from the heavens

We stood up... gathered our things and began to run.

And then it happened

...

"Where is my "Lilly" walker?"

"I can't run"

...

I rolled over

and started to cry... because for just a moment

...

I could.

Even if it was only in my dreams.

drifting into acceptance.

2012-01-14T07:00:00.000-08:00

My legs are weak... weaker than normal this week... honestly... I stay in bed most of the day, not having any energy to move downstairs.

At physical therapy I snapped this picture (while I was waiting of course)... I see such beauty in it... such promise... I see two feet that long to dance... a walker that can hardly wait for it's closet days....

Then again... today I have been working on my thoughts... accepting... just being... ok with it all... My plans are changing... my heart is changing... the desires I once had are beginning to feel as if they have drifted into the clouds...

I am here.

Right where God wants me to be... I can't change how my legs work... or when my face tremors... or the cause and affect that are sure to be seen...

I am where He wants me to be.

And for now... I am going to try and be ok with that.

Not surprisingly... I constantly find myself longing for more strength... Not that I put any hope in fortune cookies... this is the one I received while at Chinese with mom and dad... We all smiled... hoping that somehow... it was a message from God... That the mayo will have answers for me.

And treatment.

But this is where I am... Every day...

And today... I am going to be ok with it.

My legs don't work

I'm 24 and I have a walker

My face looks like tiny invisible people are jumping on it

and I have a hard time moving...

But I am going to trust... He will bring me through.

xoxo- me

Blessed Be Your Name

2012-01-12T23:20:00.000-08:00

Those lyrics seem to be pulsing through my heart today...

"Blessed be Your name in the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name"

Today... My prayers were answered. I will be going to the Mayo Clinic the first week of February. I am so thankful... I also have had a few friends, parents friends, and family that have reached out to us upon the arrival of this news... With offers of rooms, R.V's and food. I feel so so so blessed.

"Blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name"

This morning... even alongside my excitement... I'm in total disbelief... completely discouraged... that this is happening... that I'm still 24 and sick... My plans have changed... and I've become more of a "Let's just get through it" kind of gal... then "Wow!!! Look at all of my plans!"... (Note to self... If God want's my attention... he sure does know how to get it... don't be so stubborn Rachel.)

"Blessed be Your name
When the sun's shining down on me
When the world's all as it should be
Blessed be Your name."

This is my hope for the future... I long to realize that the sun is still shining... the birds are singing me a melody... and the butterflies somehow know to live in my backyard.

"Every blessing you turn out
I'll turn back to praise
When the darkness closes in Lord
Still I will say
Blessed be the name of the Lord
Blessed be your name
Blessed be the name of the Lord
Blessed be your glorious name"

May this be my prayer... in everything... Praise the Lord.

"You give and take away
You give and take away
My heart will choose to say
Lord Blessed be your name"

Currently I find myself with tears welling up inside my eyes.. as only tears can do... As they begin to fall... slowly onto my keyboard... I am quickly realizing... how extremely difficult this verses is.

"You give and take away" Wow... that is a tough one...

My health has been taken away...

But, I have been given these trials so that I may more fully know his grace.

"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong."
(2 Corinthians 12:9-10 ESV)

Blessed be His name.
xoxo- me

Sweet Moments

2012-01-12T05:56:00.000-08:00

One of the hard parts about being sick is the constant reminders about my current state... the walker... the wobbly legs... the doctors calling...

So... I've been practicing enjoying some little things.

I know you can't see it here... but these two love birds have made their nest in the gutter... I'm praying we don't have a gully-washer! I watch them every morning... as they love on each other and snuggle... rearrange their nest and enjoy the sunshine.

This is my child... Sometimes she is obedient... ~~sometimes she isn't~~ most days she has a hard time... My parents are threatening that I need to trade her in for a new model... but we all know that isn't going to happen.... She's may baby.... I've had her since I was 11 (p.s. see that adorable blue dresser in the background? A while back... I painted that... cute huh?)

These are the bulbs I look forward to blooming every year... I barely got them in the ground this fall... but I had to... I put them in a raised bed... They have been in my family for YEARS! I believe it was my great great grandfather who originally purchased them from a man who had just come over from china... In my family we call them China lilies... They smell very sweet, unlike most of today's narcissus. Their fragrance wafts through the air so gently! Love them.

Happy Thursday! You are almost there... I keep asking my mom when I get a vacation (or a weekend) away from my body... that relief you feel when the weekend is almost here is amazing... I need that :)

xoxo- me

well... that was an unexpected trip to the ER.

2012-01-11T14:22:00.000-08:00

This past weekend... I was sure of it... absolutely positive. I mean... I know my body well.

I was sure I had a bladder infection.

So... Monday Morning... I called my urologist and they told me to come in and drop off a sample.

I went to physical therapy and then to my chiropractor and then... to the phone store. I needed to get a new phone... I was due for an upgrade, and my current phone was not accepting calls anymore.

Being very disappointed that my current phone wasn't being offered anymore (it was a simple touch screen phone... no bells and whistles... just text and call)... all they were offering were the phones that slid and had all those tiny buttons... Then realizing that my fingers don't really press small buttons well (apparently dexterity isn't my strong point) I knew I had to get a touch screen again.

So... my options were non existent...

Then I asked him about the smart phones... what type of minimal plan we could do (cause heaven knows... I'm cheap)... and he explained that if we downgraded the number of minutes we were using (we had been using less than half of what we were purchasing) we could do the very basic smart phone for 15 a month... but net cost it would be about 5 bucks more... because of the downgrade.

Now... I'm not a hugely techie person... I don't need to have the internet 24/7... but the ability to move my finger over a touch screen is so much easier than pushing down a button (stupid nerves... can't work my house phone well)... so the thought of going to a "computer" for a phone was a little out of my league.

But, I did it... I got the iPhone 3... it was the cheapest phone in the place (at only 99 Cents!!! woot)... and My mom did too! Woot woot! Go fancy Mom! We don't know how to work them... but we can make calls and text :)

So now... I can receive phone calls again... although I'm pretty sure I liked my old system better... where they would call... and I would sleep through it ;)

After that... I was pretty sure I could give the urologist a sample... So I went in... told the front desk lady I was ready and she told me to take a seat...

My head laid on my walker as I really really thought I had to pee badly. I walked back up to her desk.

"I really really have to go... could I please give you the sample now?"

She pulled me back to the bathroom... and I started to get woosey...

After I went to the bathroom I was in the worst pain...

She asked me to wait in the waiting room while they dipped it... to check for infection.

The nurse called me back in... as I walked... I started feeling nauseous... that lump in the back of your throat feeling... My world started spinning....

I asked her if I could sit on the floor... She sat me back down in the waiting room... and then... she told me my urine was clear... no infection.

The doctor decided that I needed to go to the ER.

"Great... I wasn't planning on this at all!" I thought to myself, " Seriously... I was supposed to come in... you were supposed to give me some meds... and I was supposed to go home."

"Is it ok if I call you an ambulance? You are going to have to pay at both the parking booths"

"No... I'd rather pay 6 bucks than... a gagillion for an ambulance!" I said... trying not to vomit.

"I'm worried you wont make it"

"Oh I will!" I told her, "There is no way that I'm being hauled out of here in an ambulance."

"The doctor just called the hospital. They know you are coming"

So... painfully... I walked down the hall... went down the elevator... across the lobby... sat on the bench... got in the car... my mom drove up the ramp to the hospital... I got out of the car... walked in... signed a paper and was taken back to a room... where ~~I surely thought I would die~~ I was pretty sure I was in an enormous amount of pain.

I tried to explain to the doctor that I was a difficult stick... and then... after lots of prayer and heat on my arms... and legs... and a few sticks... we finally got the IV started on my foot... we couldn't draw blood from it... but we got it started... The vampire then came and miraculously took the blood from my arm... with only one stick...

From this point I don't remember much... thanks to some drugs... but I know that my wonderful pastor and his wife came to see my parents and I as we sat in the er.

They pulled me in for a cat scan... and an ultrasound... pretty sure that my appendix had burst...

10 minutes after the scan... the doctor came in... and told me that I had a giant cyst... the size of a baseball on my ovary.

Hallelujah! Something NORMAL for once!!!! Yeah... I was excited... I've had cysts before... never this big... but at least I knew I got to go home.

The next morning... I saw my obgyn... who did another ultrasound... and it was already shrinking. Praise God. It had shrunk by .5 cm. It isn't supposed to burst... because of they type of cyst that it is... but it should shrink.

He told me to rest... and sleep... and it should continue to shrink.

Then I went to my neuro... to go over the results of my Lumbar puncture... and Pelvis MRI.

"Well we saw that you have an ovarian cyst on your left ovary... pretty substantial size... but that's not whats causing your problems."

"Yeah... we found that out last night in the ER" I said laughing at the irony...

He then told me that the rest of the LP was in the "Normal Range"

He then told us... that the Mayo Clinc would be a good option. I put in my application last night... and they said they would call within 24 hours.

So... The Neuro is going to be working with us to get me in... Please, Please, Please pray that I can get in soon.

xoxo- me

Sunshine

2012-01-08T06:55:00.000-08:00

all alone.

2012-01-07T15:35:00.000-08:00

I thought I was ready to spend a day all by myself, something that I haven't done in over a month.

My parents went on a date... and my sister went to volunteer, then go on a date.

And I realized... I wasn't ready to be alone...

After struggling to get downstairs, I heated up some black bean salsa soup from the other day... and in the very pit of my stomach... I realized... I wasn't ready.

I wasn't ready to face the silence... The silence that surely would surround me all day. It was the silence that reminded me that I am trapped in my broken body. Trapped in my home. Not able to go and enjoy the ocean waves or the glorious mountain view.

I told my parents yesterday that I was starting to fall into a depression.

Now... I'm going to get on my soapbox for just a minute. I've struggled with depression before. And at that time... I was closer to God than I have ever been. Do not tell me that depression is something caused by a "distance from God". Depression is real. It is a real chemical imbalance that happens in the brain. It doesn't mean that I have some sort of guilt because of my sin in my life that I am not admitting to... Now granted I do believe all of these could be possibilities. But... I know that they are not the reason for me... at least not currently.

My reason, is the same reason I fell into one 7 years ago. No one expects to get sick. No one expects to be 16 and put into a wheelchair because they don't have enough energy to stand. No one expects to go to prom, graduation and grad-night in a wheel chair. No one expects to have a surgery that will leave them with a 7 and a half inch scar down their chest.

Did I feel distanced from God? No... I was closer than I had ever been.

Currently... I didn't expect to go from health to sickness, again. I didn't expect to have to stay home from work so quickly after getting a promotion. I didn't expect to loose my ability to walk. I didn't expect to loose my ability to drive. I didn't expect having to depend on my parents and sister... for things like... getting myself up stairs. Or getting into the shower from time to time. I didn't expect to feel like a burden. My chemicals are imbalanced. I am disappointed... I feel in some way that I picked the short stick in life. My plane ticket was changed from the Bahamas to the Sahara desert.

I feel alone in this battle. I know the Lord is with me... But I feel stuck... in this body... that doesn't work... And it's only 24.

So Please, Please don't judge. Don't tell me that if I read some book, or ate some food, or did some exercise it would all go away... everyone is different. Emotions are strange... And honestly... I believe God gave them to us so we could work through them... learn to depend on him. Grow closer in our struggles.

It is hard to be open... But I believe that the more I am open and honest... the more healing comes. And I hope that somehow it helps those who read. I don't write for fame or glory... but for myself. I'm not trying to say my life is the hardest (I know that it isn't) or that I am not recognizing anyone else's struggles... but I write simply for myself.

I know that my parents and sister are thrilled that they can help me. They have been wonderful.

Today we all needed some time apart.

But now... I sit... realizing how absolutely helpless I feel. How discouraged I am at my current state. My mind is running with what if's.

Today.. If I were healthy... I would have gone to starbucks and purchased a coffee, with room for cream. I would have added three sugars to it... and a whole bunch of cream. Then I would have taken my coffee... and this months issue of Real Simple and sat on the bench at the top of the beach.

After I had finished I would have walked down the stairs (huge challenge for my body) and taken a stroll along the pier and talked to the old fisherman who sits on the pier.

It would have been perfect...

But now... I sit in complete silence... with only the clicking of my keys and my ticking clock. With no ability to leave the prison that is my broken body.

Praying that my Lord would take this away. And if he doesn't... that it would be acceptable in my mind.

And somehow... I'd realize that I can still enjoy little things... Like my cat snuggling up to me... and crocheting with no where to go...

Tuesday I get to find out if I'm going to be allowed to return to work. I'm really going to push him to let me. But for some reason... I'm not expecting him to be "ok" with that... I'm weaker than I was the last time I saw him.

Now... I'm going to choose to be positive... choose to smile... and somehow... make my way out into my back yard... sit in front of my winter bulbs I managed to get in the ground this past fall... and admire how the Lord allowed them to bloom...

I'm ready to blossom into Joy.

xoxo- me

rainbows

2012-01-06T07:47:00.000-08:00

A couple days ago I was awoken by something thumping into the ground outside.

The neighbors 2 doors down are selling their home. It is a nice home... gorgeous home. And they are selling it... Guess they are moving to greener pastures.

Yesterday, as I was threatening to never get out of bed again (eh... wasn't feeling so great), My mom opened the window and saw the sign...

"sure would be great if you could move in there." She said as she wiped the hair out of her eyes.

"Yes it would... single story... handicapped accessible... close enough that if I fell I could call you at 3 am for help.... but far enough away that if I wanted to cook fish for dinner dad wouldn't notice."

"I've actually been thinking about it... ever since I saw the sign go up." She appeared to get more excited.

"LOOK there is a phone number!" she said as she pulled out her phone to call.

"You are currently looking at a beautiful home in Rancho Santa Margarita." She hangs up.

"No I'm not... I think you have your houses confused." She says, obviously talking to a machine.

We started planning our day... figuring out how we were going to ~~attack the doctors~~ call the doctors for updates.

Then it happened... her phone rang... from an unknown number.

"DON'T ANSWER IT!!!" I yelled!!!

We waited for her message beep... then dialed the voice-mail....

"Hello Alllliosoonn" Come on people... listen to who you are leaving a message for... "We saw that you wanted to get more information on a property in RSM." umm... no we didn't... your system is wrong.

So we deleted the message... and learned a very important lesson... always block your number before you call to get info on a house :)

As far as medical updates for me go... I'm continuing with PT... Sadly, I am now getting weak on my right side also... and my hands have been experiencing numbness... Please pray that they figure out how to make this better.

Now... All I need to do is find the end of the rainbow... so I can afford the house two doors down... So that at 3 am I can call "Mom, I feel down again... help" and she will hear me.. and walk over in her robe to pick her stubborn daughter off the floor. Man... that pot of gold better be at the end of the rainbow... my legs and Lilly the walker will be too tired from trying to find it. So it better be there!

Well either that or maybe I should write a book.

xoxo-me

eggshells

2012-01-04T02:21:00.000-08:00

I'm trying really really hard.

I'm trying to stay positive.

But tonight... I broke into tears... because something as simple as pressing the pedal on a bathroom trashcan, to lift the lid, is now... nearly impossible.

Yep... I struggled to get my foot to move in the correct way... There is nothing quite as frustrating as knowing that you can do it... but not being able to.

It's simple things like trashcans now that bring me into a big puddle on the floor.

Sobbing.

My face falls to my hands as the drip drip drops of tears pour from my eyes. I wonder why I am so discouraged... Why I can't handle this better. Why I can't get strong enough to drive... Or go back to work. Why is this happening?? Why can't I be young and HEALTHY?

I spend my days doing puzzles... crocheting... reading... riding my bike as much as possible (I'm up to about 30 minutes a day... 3 ten minute sessions... with long rests in between)... watching the news... and "planning" fabulous vacations I don't think I'll ever go on (but it sure is fun to pretend to plan them... right? It's kinda like window shopping... you just enjoy the act of pretend.)

I hate to admit it... And maybe I shouldn't... but in the name of honesty (which is why I have this blog) Recently I've become rather jealous. (FYI... Please Make sure you read to the end of this post. Or you will surely never talk to me again.)

I get jealous of my family when they run up the stairs to "grab something real quick"... I get jealous of my friends when they have the "Monday blues"... seriously... a bad day at work is better than a good day at home sick with a neuro-muscular disorder... I get jealous of people who can shower without exhaustion... confession... I just took my first shower in 4 days... eww.

I've also become angry.

I've never been an angry person... But my blood started to boil when I read what someone had written on their status on facebook (they were trying to be encouraging to their friends with their new years resolutions) "Jump up and down... if anything jiggles... time to exercise!".. I was furious... Way to point out that I CAN'T JUMP!

I covet peoples health.

Now... I realize... ~~I'm a tad bit oversensitive...~~ I've totally gone into the crazy zone... I'm over-analyzing stupid things like trashcans, stairs, Monday hatred, and fb statuses... I'm taking things waaayyy too personally.

I'm allowing my illness to color the way I see the world... and expecting for everyone to be sensitive to my crazy thoughts... I'm expecting people to know how their actions would make me feel... even stupid actions... like running up stairs.

I'm asking people to walk across a street filled with eggshells... and not to break one... all while being sensitive to MY emotions... and how it would make ME feel... Hoping that they would use a walker to make ME feel better... so I didn't feel so alone.

I am wrong.

I am ashamed of my self-centered view of life lately. Being at home and sick can really shrink my view of the world. I am realizing how absolutely wretched I am... How my human thoughts and desires are just simply awful.

1st Peter Chapter 2

¹ So put away all malice and all deceit and hypocrisy and envy and all slander. ² Like newborn infants, long for the pure spiritual milk, that by it you may grow up into salvation—³ if indeed you have tasted that the Lord is good.

I am so glad that the Bible is clear that we need to put it all away. We need to pursue God's word.

Now My dear friends and Family (you have seen the brunt of this)... Please forgive me for my anger... jealousy and covetousness... I am truly sorry.

Oh Lord... Please take away my jealousy and anger. So that you can be glorified through my actions. Let me not be discouraged by my current state... but encouraged by your love. Knowing that you work all things together for good.

xoxo-me

bikeriding

2012-01-02T22:59:00.000-08:00

From the time I was in second grade until I was in sixth grade we lived in a gated community... it was wonderful... mainly because we could ride our bikes with little to no cars. The neighborhood was a loop... and we would ride round and round and round.

At one point, I really thought I would become a professional bike rider.

We would practice to see who was the best speed bump jumper and who could get the most air. It was wonderful. The hot sunny Southern California summer days were filled with our bikes (which were the most ugly hand-me-down pieces of joy one had ever seen) we would ride to the park and back and down the street to the little pharmacy with the mean lady who worked there (I'm sure she just didn't like dealing with children) she would tell us, as we bought our 10 cent airheads that we needed to bring our mom with us in order to buy something... and we would look at each other wondering why she didn't want our money... probably because our dimes didn't mean as much to her as they did to us.

It was an incredible sense of freedom. Adulthood. We felt so grown up.

When I was at physical therapy last week I asked my therapist what I could do to help my recovery. Mainly, I wanted to know how I could be active... (confession... my scale hates me at the moment... It has been flashing these numbers that I've never seen before... somehow it thinks that the higher the number the more points it gets... I keep trying to tell it that we are playing golf...and we really want low numbers... but it hasn't been listening ) I've been pretty sedentary since early December... because it isn't safe to walk. When I do walk... I twist my knees and ankles from lack of strength. and that makes it really hard to get any type of movement in.

I asked what she thought I could do... safely. And I mentioned a recumbent bicycle. She said that was the perfect piece of equipment... because I could go slow... and not have any chance of falling. Then I was given some guidelines on what I should have.

1. Home Machine (that way I wasn't going to the gym to ride for ten minutes... if I had it at home I could ride for 10 min. take a break, go back in an hour and do another 10.)

2. Lots of handles (on the sides, and front) So I didn't fall while getting on it.

3. Low middle so I could get my legs over safely.

4. Needed to be a recumbent bicycle (with a back rest)

So... I did some research... the one that was perfect was 250 bucks... Seriously... I was frustrated. I decided to post on facebook asking for recommendations (hoping someone would know of a cheaper one.) and one of my friends wrote me saying that her parents had one in their garage they were hoping to get rid of.

The next day we went to take a look at it... it was perfect... and the perfect price... free :) Seriously... huge blessing! So... We got it home.. the electronics didn't work but that was fine... I grabbed my ladybug screwdriver it's red and black... then after finding the manual online, I took apart the electronics... after cleaning out the battery part (with a little help from dad) and making some minor adjustments... it was ready to ride. And fully operational :) even the timer worked!

And now.. slowly but surely... I can start building my strength and stamina.

Now, if only I could feel the wind in my hair and sun on my back... and take a trip down to a little candy store... to buy a piece for 10 cents :) And this time... I don't need my mom :) err... maybe I do... Cause, currently, this girl isn't allowed to go anywhere alone... Mommmmy??????

xoxo- me

New Year's Resolutions

2011-12-31T01:12:00.000-08:00

Every year... millions of Americans make New Year's Resolutions... I am normally not one of them...

You see... there is something about promising yourself that you will loose 10 pounds... and subsequently giving up your desire... after you realize that you probably shouldn't eat the whole can (or in my case cans) of nuts your sister gave you for Christmas. (no... I don't like nuts that much... I just love presents. I had told my sister that I would be happy with a can of nuts and a bar of soap... so I got 4 cans of nuts... and 7 bars of soap... all wrapped individually... oh and she gave me a subscription to Real Simple.... love) So... I typically don't make myself promises I can't keep... but this year... I think I will... I am going to make two lists... One that is realistic... and one that is sooo fun (and mostly ~~unrealistic~~ slightly silly... but totally do-able) you will be jealous... yay :)

Ok here we go!

Realistic New Year's Resolutions 2012

1. Eat more colorfully. I'm not talking gummy bears here my friends... but fruits and veggies. Ready. Set. Hold me accountable.

2. Enjoy more sunlight. Confession... I'm whiter than white... Dr. says vitamin D is super important...

3. Do my PT exercises every day. Now this one... might be a bit... eh.. I can do it :) I HAVE TO!

4. Be open to friendships. I know I struggle with this one... I have a hard time with girlfriends especially my own age... So... this year... I'm going to try harder.

5. Floss daily... Gross, I know.... But I'm pretty much a 3 times a week flosser... ewwwww. Can't believe I just admitted that online.

6. Take 10 minutes every day to just relax. Not worry... Give it all to God.

7. I've always meant to go through Oswald Chambers book... and this year I am going to do it! Wanna Join me? It's super easy now... it's all online!!! And they have the verses you need to read through the Bible in a year on the same page as the devotional... yep... Going to do that too :) Click here for the link to the website :)

8. Write often... for some reason, some of you think I'm a good writer. You obviously can deal with my poor grammar... and spelling... and vocabulary... and punctuation... and ALL of my dot... dot... dots... (yep I'm totally... addicted) So... I figure that I should keep it up. I found a free grammar course online that I plan on taking. So... maybe then, I will be a little more confident :)

9. Be kind with my words... My dad always reminds me to "Take the venom out of your words". Sometimes, because I am a very direct, no nonsense, to the point person, my words can be hurtful... I need to work on that.

10. Be grateful... I think that is going to be my word for the year. Grateful. I need to acknowledge the blessings in my life... daily.

11. Read more books... Confession... I don't think I finished ONE book this year... (I have finished devotional books... but not pleasure reading... unless cookbooks count.)

12. Have more grace... falling isn't on my list of to-do's :)

Ok... Now for the fun ones... Yes... I really do want to do all of these... This year :)

1. Go to the Camel Dairy Farm. I saw it on Huell Howser... If you haven't seen my impression of him... you are missing out... Ask me next time you see me :)

2. Meet my Husband. Ahem... I'm currently taking applications if you'd like to, or know someone who would like to apply.

3. Throw a bunco brunch party. Wanna come?

4. Look into joining the Daughters of the American Revolution... Yep my great great great (I can't remember how many) was a general. And if you've watched Gilmore girls... You know that they have plenty of fundraisers and parties :) I love parties :) and charity.... and American history.

5. Go lobster fishing on the pier... Yeah... My dad and I have been meaning to do this but haven't gotten around to it.

6. Go to the Lemon Lily Festival in Idyllwild again... I had way too much fun last year :) And yes... it's a festival for a flower... obviously, I'm an obsessive flower lover.

7. Feed the Giraffes at the zoo. I really really want to do this.... like really really really.

8. Swim with the dolphins.

9. Plan multiple trips to gardens... arboretums... and museums. Cheap cheap fun :)

10. Go to the Griffith Observatory.

11. Go to a Presidential debate :) ooooh yeah :) I love love love politics :)

12. Throw an awesome Olympics opening ceremonies party... Olympics and Presidential election in the same year... oh it's going to be amazing!!!!! I know... that happens every 4 years :)

Now... what am I missing?

I can't wait for the New Year :)

xoxo- me

Year in Review

2011-12-29T12:50:00.000-08:00

Wow... 2011 has sure been full... Full of challenges... Full of hardships... And full of joy.

I decided I should probably do a quick recap... So that I remember... all the challenges, hardships and joy.

January 2011- I got a promotion... I was thrilled! I switched offices and got a slightly longer commute... but it was wonderful!

Then... I got sick... We thought it was an appendicitis... but we were wrong.

February 2011- Doctors decided to do a diagnostic laparoscopy... I was devastated to find out that I had endometriosis... little did I know that this year could have more health issues in store. Quickly I changed my diet, changed my routines and tried to combat it as much as possible.

March 2011- I checked my credit score... I had previously not had a score, but since I bought my car "Wendy" my score had skyrocketed! 750 baby!!! woot woot! I realized that I could probably... get pre-approved for a mortgage! And good thing... cause I had promised my parents I'd be moved out by the time I was 24 and a half... I celebrated my 24th birthday with friends at the roller-rink. It was wonderful!

April 2011- I went house shopping... And I got pre-approved... Then I made an offer! God was watching out for me when I didn't get the little 500 square foot studio condo that I had hoped for.

Days before my offices' "Royal Wedding Party" (yes I am that much of a nerd... Yes... I planned it) I was rushed to the urgent care by my boss... Doctor said I probably had a kidney infection (It all makes sense now... apparently when you have nerve issues that cause bladder issues kidney infections are common)

May of 2011- I was stuck at home... with a fever... and no clue what my body was doing. I started blogging about my trials... after being told that the disease I had had at 18 was probably back... my heart sunk. Why me? I couldn't help but think.

June 2011- I went through many "paper napkin" tests... Thankfully, at the oncologist/hematologist, I found out... My castleman's disease wasn't back... praise the Lord. The inflamed lymph-nodes were probably just from the kidney infection. I wasn't better though... Still out of work...

July 2011- I started seeing the specialists... My days were filled with the rheumatologist, endocrinologist, infectious disease doctor... Finally at the end of July... My fever broke... and I was thrilled to be allowed to go back to work part time. I wasn't able to go on the camping trip my sis and I had planned... but that's ok... we made up for it in November :)

August 2011- Suprise! My parents bought a new house... and we moved... I learned what a fabric hoarder I was...

I started to loose my vision and the doctor temporarily took away my driving. This is also the month I swallowed a camera... yep... I'm that cool. What makes me cooler? I posted a picture of the camera after it came out... snazzy!!! Oh.. and I went back to work full time!

September 2011- I learned I needed to trust my Lord with everything... again. I questioned how I could ever be loved... how anyone would ever date me. (which honestly... I still wonder and worry about... I know I shouldn't... but I do.)

October 2011- After a very unpleasant and invasive test... I finally got a diagnosis... that led to the "actual kind-of diagnosis" in December... I had nerve issues... I spent October researching neuro-muscular and demyelinating disorders... All while keeping it close... not telling everyone that we thought we were on the right path...

November- Was a great month. My sister and I took a trip to the Grand Canyon. It was wonderful. I started seeing my new Neurologist... who seemed to move quicker than the old one. And I was encouraged at the thought of finally being diagnosed.

December 2011- The month started off difficult as I realized more and more how serious this illness is. Then.. on the 6th... I fell... this sped everything up. I had a lumbar puncture scheduled for the next week... I was told I had to get a walker and a cane. Lilly and Kandy have been my constant companions ever since... I spent a few days in the hospital with complications from the LP. And I still have bruised arms from the 43 sticks. But just 2 days ago... I learned I am getting stronger... I am thrilled.

Wow... This has been quite the year... All in all... even on the hard days I've seen the blessings. One of my biggest blessings has been this blog. It has been wonderful to be able to write out my feelings and direct people this way for updates (so I don't have to explain it a million times). Thank you for your support, prayers, and love. I am so thankful that you take the time to read through my ramblings, laughs, and tears.

I'm ready for 2012... Now the only question I have is... Are you ready?

I hope you will continue to ride with me through the trials and joys of a New year :)

Thanks again!

xoxo- me

STRONGER!

2011-12-28T23:04:00.000-08:00

I hope you had a very Merry Christmas!

Our Christmas was filled with joy! On Christmas eve we went to our candlelight service at church. It was wonderful. As always, my sister and I had a hard time controlling our giggles as the hot wax dripped onto our fingers. It was a wonderful time of remembering Christ's birth and why he came.

On Christmas morning, my parents headed off to church while I rested at home (I didn't want to be too exhausted when the family came over). The family arrived at about one o'clock and we enjoyed our Christmas ham. On Christmas eve I had put together an amazing ginger pear cheesecake... and it was the PERFECT dessert. (Don't tell my PT that I stood for so long without resting... or that I wasn't using my walker... but holding onto the counters instead).

This Christmas I decided to make all of my Christmas presents... Knowing that I have to meet my deductibles in January I knew I needed to save my money (and I have about 94750925740 hours on my hands right now)... so for about 30 bucks (all together) I crocheted all my Christmas presents :) I've been waiting to show you... forever... and guess what... I forgot to take pictures of almost everything... but I'll get pictures soon :) I just have to steal the presents back.

I did get a picture of the hats I gave to my cousins. The one on the left is for my 14 year old cousin.. I asked what she wanted and she sent me a picture... I made the pattern for the blue hat. The other is for my 12 year old cousin... I knew he loved angry birds... and I found this tutorial on youtube to make an Angry Birds hat. I made a couple modifications... and I added a couple of rows after he opened it ( only took me about 12 minutes to make it longer) so that it fit him well.

All in all Christmas was wonderful.

Yesterday at physical therapy I received some great news... I'M GETTING STRONGER!!!!! Yep... STRONGER! This is a huge blessing. I had been told not to expect to get stronger quickly... and that the some of the weakness is sometimes permanent (I am thankful that the doctors are honest with me... it isn't discouraging when I hear such things... I'd rather be surprised by improvement than disappointed by none). I went home nearly dancing... and I might have been chanting, "I'm getting stronger! I'm getting stronger!".

Today I woke up sore... Like... I want to disconnect my legs sore. This morning I hauled my sorry behind back to PT and worked it off again. But today I had a question for my PT.

"So you know how yesterday you said I was stronger?" I asked excitedly.

"Yes" She said with some hesitation in her voice... knowing by now that if she gives me a little praise I run with it to the hills.

"Well I was wondering if, since I am stronger... well do you think it would be ok... well... do you think my legs have enough control to drive?" I asked hesitantly.

With the kindest eyes on the planet she giggled a little bit and said, "No... sorry... not quite yet"

Content with her answer... and knowing I was probably jumping the gun... I finished my session... having fun the whole way... I really do love my physical therapist. She is an angel.

I got home... and received a call... My short term disability has finally been approved... Praise the Lord. I am so thankful for that insurance... it covers 60 percent of my pay while I'm out of work. Now... I just can't wait to get back :) We are aiming for the middle of January... hopefully my strength continues cause I'm going stir crazy!

Now... My sore body has got to get some rest.

I'd love to hear about your Christmas :) Please comment and tell me your favorite part!!!

xoxo- me

Merry Merry Christmas!!!

2011-12-24T19:08:00.000-08:00

From my beach in San Clemente to your home, wherever you are, I hope you have a Merry Christmas!

May the Lord bless you!

"Glory to God in the highest, and on earth peace, good will toward men!"

xoxo- Rachel

Christmas Blessing

2011-12-23T17:07:00.000-08:00

Last year... I got one of the best presents ever.

It wasn't a gift wrapped in shiny paper with bows, it wasn't under my tree, it wasn't even something I could hold in my hand. It was a blessing.

In June of 2010 I met an older gentleman at work. He had those eyes... the deep blue kind eyes you could stare in and feel his heart. On our first meeting I asked him if he was doing anything fun that week. His eyes lit up as he told me how he was taking his wife out for their 60th anniversary. He told me how he had special ordered her favorite roses... ordered a limo... and was taking her to their favorite restaurant (which I believe was Cocos :) how cute is that!??!). His words exuded such love for his wife... It brought tears to my eyes. I asked him

"What's your secret to such a happy marriage?"

And he came back with simply the best answer. An answer I have witnessed in my parents and grandparents...

"Love the Lord with all your heart first... Pray every day that he would allow you to love your spouse with your whole heart... and tell them every day that you love them."

Every Tuesday, at 10 o'clock I would look forward to him walking in in his pastel colored sweater with his walker holding envelopes carefully made out with instructions to fulfill all his banking needs. He would smile and ask me how I was doing... We would chat for about 10 minutes about life, love, and friendship... I treasured those chats. He would tell me about his sweet wife whose name was Mildred and I would tell him to tell her hello for me... I'd never actually met his "Sweet Mildred" until early December.

She walked in... came to me because her hubby had told her to... and explained how he had fallen...and broken his hip. I assured her I could help her out with her banking needs (she was completely overwhelmed). As we talked I could see why he referred to her as his "Sweet Mildred". She told me he was moved to a rehabilitation facility and he wasn't doing well.

Weeks passed and I didn't see either of them... My heart sunk as I knew he couldn't have been doing well since I hadn't seen either of them... I prayed for both of them... for strength and comfort.

Now this is where the story gets good... I work with the Junior high group at my church (haven't been with them since April of this year because of this Mustard Seed... I can hardly wait to be strong enough to go back) and we were going caroling at a local elderly home... We met at the church... Prayed that we would be used... practiced our Christmas Carols... and drove over to the home.

As we walked in... I saw a sweet little lady with her walker standing by the door.

"MILDRED! I'm so glad to see you! I had no idea you were here! How are you doing?" I said as I walked across the lobby.

"Oh my goodness Rachel! He is going to be so happy! Come on!" She grabbed my hand and pulled me into a room on the side. Walking as fast as her little legs could go, she yelled inside, "Your Rachel is here!"

I peeked my head inside, and there... with sunken blue eyes... but still as much life in those eyes as the day I had met him... sat my dear friend.

I will never forget the words he said... they still make me get goosebumps when I think about it.

"Oh My Rachel", he said, with love in his eyes, as he grabbed for my hand," I just knew you would come! I knew it!"

I told him I was praying for him... he told me he already knew that... I also told him what a blessing it was to see him, I hadn't expected to run into them there... He told me again... that he knew I was going to come. He then promised that we would see each other again.

My dear friend passed two days after I saw him. His wife came into my office and asked to speak with me... she told me how much it meant to him to see me one last time... and how he told her, and everyone he saw, in those last 2 days how I had come to see him... and what a blessing it was to know that we were brothers and sisters in Christ.

That was the best present I could have received last year.

And I know... I will get to see those sweet blue eyes again.

So... Merry Merry Christmas My Dear friend! I hope your second Christmas in Heaven is even sweeter!

xoxo- me

Christmas excitement.

2011-12-23T00:30:00.000-08:00

So... I'm giddy... I can't wait for Christmas!

When I was four... I remember my mom pulling out the Christmas stuffed animals... They were special, they smelled of cedar and dust, we were only allowed to play with them between Thanksgiving and New Year's Day. We had "Bambi" (I'm pretty sure she was supposed to be a reindeer... but at 4 who can tell the difference between a beloved deer in a movie and a fictional, mystical, flying, antlered, animal?), a Mrs. Claus made out of a mop, and Jingle bear (a teddy puppet with a hat and gloves that were on a string)... I'm sure there were more but those are the ones that stick out in my mind... My heart fluttered with excitement when she would pull them out of the trunk... Seriously?!?! I got to play with them?!? Finally?!?!

I remember setting up dinners for my babies and stuffed animals... and building them a pirate ship out of the couch cushions... Every night I would ring the bell on my favorite ornament... Christmas was magical.

But my four-year-old Christmas stands out in my head for another reason too... It was the first time I really remember getting in trouble.

You see, I ~~was~~ am kind of a stinker... I get my mind set on something... and I have to do it... Well.. I thought I needed a hair cut, and like any practical girl, I took my pink scissors, that were shaped like a shark, and gave my bangs a little trim.

Now... I should interrupt this story and fill in some blanks... I was a bald child... my poor mom waited till I was 4 to even be able to secure a bow in my hair... It just came in patchy and thin... So you can imagine her dismay when I chose to trim my locks... with my pink shark scissors of course.

I cut off about an inch.

I can still remember... My mom had Bing Crosby's Christmas record playing (yep... I am barely that old... we had a cd player too... but most of our music was on records) the air was cold and I was sitting at the dining room table...

"RACHEL SHOEMAKER!!! WHAT HAVE YOU DONE?!?!"

Quickly, after I had tried to explain my hardest... I was put on time out... at the dining room table.

Now.. honestly I probably wouldn't have remembered the hair event if the next event hadn't happened... this is where I really got in trouble...

I took the butter knife that was sitting on the table (she had pre-set the table for dinner) and I held it in my fist and banged it into the table as many times as I could before she made it over there...

My mom, devastated, that one of her only nice pieces of furniture was now dented (apparently I was a strong... but slightly baldish child)... that's when I got in trouble. I lost all scissor privileges for a LONG time... and I'm pretty sure I remember eating off a small tray on the floor for dinner that night (My table privileges were removed that night so I could learn to respect furniture... you think that's bad? I don't... it worked... didn't damage me... and my parents were excellent at taking things away... like my door as a teenager... my blanket as a six year old... my mattress as a three year old, only for one night of course! (apparently if you dig your fingers into it and pull out the stuffing it's a big deal) but I really did learn my lessons... and the best part... I know that all of it was done in love. My parents never disciplined angrily, and for that I am grateful.

Every couple months (until we got rid of that table a few months ago) when my mom would sit at the right angle and see those dents... she would remind me of the time I made them... and we would have a good laugh... I promised her I'd never do it again... I'm glad she didn't hold a grudge.

Now... With every time I hear a song from that Bing Crosby album... My mind goes to this...

And it makes me excited for Christmas.

Cause even though it's a slightly negative memory... it's a funny one.

So... I'm really excited for Christmas morning...
Partly because I ~~slightly~~ completely remember an adorable sweater dress my mom is giving me... and I really can't wait to wear it.... even though I promised her I would forget about it after I tried it on.

And also because I can't wait for my family to open the gifts I've made them the past few weeks... I decided with as tight as my finances are going to be, and with all the free time I have, I'd crochet all the presents this year... I've spent 24 dollars... and about 21 hours :) I can't wait to post pictures :)

Now.. Santa... I promise, I've been good. I haven't dented any tables... or cut my hair this year... So please please bring me that sweater dress I know is waiting under the tree ;)

xoxo- me

diagnosis... kinda

2011-12-21T21:38:00.000-08:00

Well... I have an "official / unofficial" diagnosis.

Yeah you read that right...

My eyes gazed out the window as I asked him the question... I just couldn't bare to look in his eyes.

"Well... I don't really know." He murmured as he thumbed through his papers.

"Seriously... No... that is not acceptable. I need something... You have to say something... YOU HAVE TO!" I thought to myself, while my blood boiled inside me like a Christmas tea.

"Well what are you going to tell my insurance?" I asked (out loud... trying not to bite his head off)

He pulled out a pink piece of paper and scribbled a few words on it. Slowly he pushed it across the desk as if we were negotiating a price for a home... Then he said it... well I know that it is in this family...

I read the slip as he explained it out loud... I didn't hear his words... I only read what was on the slip... the slip I hold in my hands now...

"Possible neuro-muscular disorder/ demyelinating disease"

"So you still don't know what it is for sure?" my chin quivered as I asked the question...

"I'm sorry." he replied.

We had talked about this before... I've known that this was possibly the case... but him actually telling the insurance company... makes it "real"... it means I no longer sit in the "unknown catagory". Hallelujah. He gave me 3 doctors phone numbers he wants me to get consults with all of them... just to make sure we haven't missed anything... a neurosurgeon... a neuro-muscular specialist... and some other neuro something that I can't remember... And he needed me to get another MRI... this time of my pelvis... (I got it done this evening. )

Then he said the words I've been selfishly waiting for... "We need to get you a handicapped placard."

YES!!! NORDSTROM'S HERE I COME!!!!!!!!!! No more waiting to park for me!!! (after my appt. I rushed to AAA and got my placard... best part of my day)

That was the best part of the appointment... well that and the fact that we've narrowed it down... and come up with a "kind-of-diagnosis" yeah... that's what we are calling it.

So now... we need to pray that I can get in to see the doctors in a timely fashion (super duper hard around Christmas). And that the last panel on the spinal tap would hurry up and come through. That all the doctors would have wisdom... and that I would have the grace to get through it all... I don't want to become angry.

yes... there is an example of that anger awaiting..

Today... I almost blew up at a woman at PT who was basically "the rudest person ever"... She walked in (yes... I am now jealous of those who just walk in) and demanded to know why it was so busy (it totally wasn't... there were lots of parents/spouses waiting in the waiting room)... she then went through her whole session whining about everything... I wanted to scream at her... I was jealous, mainly because she was walking... and I was mad that she was complaining.

Then we went to dinner... on our way out... I heard a man say.

"woah there grandma... don't hog up all the space with your walker"

I thought he was talking to me... just as I was getting ready to turn around and give him a shiner (lol... just picture that in your head for a moment... yeah... it is just as funny as you think... my 5 foot frame reaching up... lol) I saw that he actually had a grandma with him... he wasn't talking to me.

So... I'm apparently over-sensitive... and over emotional.. but tomorrow will be better.

And at least I have a handicapped placard....

xoxo-me

P.S. I am now available for hire as a parking buddy... yes I have to go with you... and yes I am partial to shoe stores... especially shoe stores where I can special order flats in a 6 ;) But for the next few months/years... My wallet says I'm going to be a really good window shopper :)

Heal me

2011-12-16T00:04:00.000-08:00

I'm struggling. Tonight my blood pressure dipped dangerously low. My legs went numb. We called the doctors... they told me it's probably just the Mustard Seed. They told me to wait it out... and they told me what would make me have to come in. I was thankful that they didn't rush me into the ER.

My heart is heavy.

God... Lord of Heaven and Earth... hear my cry. Please heal me. Take this away. I want to be healed.

I know that only you have the power to do that.

Hear my cry, Oh Lord.

"I will extol you, O LORD, for you have drawn me up
and have not let my foes rejoice over me.
O LORD my God, I cried to you for help,
and you have healed me.
O LORD, you have brought up my soul from Sheol;
you restored me to life from among those who go down to the pit.
Sing praises to the LORD, O you his saints,
and give thanks to his holy name.
For his anger is but for a moment,
and his favor is for a lifetime.
Weeping may tarry for the night,
but joy comes with the morning.
As for me, I said in my prosperity,
“I shall never be moved.”
By your favor, O LORD,
you made my mountain stand strong;
you hid your face;
I was dismayed.
To you, O LORD, I cry,
and to the Lord I plead for mercy:
“What profit is there in my death,
if I go down to the pit?
Will the dust praise you?
Will it tell of your faithfulness?
Hear, O LORD, and be merciful to me!
O LORD, be my helper!”
You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
that my glory may sing your praise and not be silent.
O LORD my God, I will give thanks to you forever!

(Psalm 30 ESV)

done

2011-12-15T05:59:00.000-08:00

"I'm just done" I told the doctor with tears streaming down my face.

"What do you mean, done?" she asked concerned about my psychological state.

"I mean.. I'm done being poked... I'm done being the 10% that leaks after this procedure... I'm done BEING SICK! I'm done using a walker... I'm done being prodded. I'm done being sick. I'm done not having a treatment plan. I'm done. I want to go home. I want to go back to work. I want to be back to normal. I'm done. Done. Done. Done" I said stubbornly.

"Ok... let's take this one step at a time. We are going to try and slow the leak from your brain so you can go home. You have to be able to open your eyes without pain meds. And you have to keep all the food and water down. If you can do that... you can go home."

My nurse in the hall explained that I went through three hours of poking the day before... and instead of one blood patch epidural he did too... because he was hasty and thought they could get my blood... so he inserted one... and I had to stay arched like a "mad cat" for over an hour... all while being afraid of being paralyzed if I moved. She explained how even the Anestisologist couldn't get my vein, he had to start arterial sticks... and he did more than one. Then he did another epidural, and my back was now quite sore. She explained how I held it together gently telling him when it hurt... and didn't scream my head off... she explained that she would have been "done" too.

That night my boss had texted me and asked to come over... then my previous boss asked if she could come over too... it was wonderful! I was so thankful to see both of their smiling faces! When they came I was fully loaded on pain killers... so I could actually have my light on a little. We talked and giggled... just like old times :)

My parents had gone to see White Christmas. I had given my ticket to my friend who's been dealing with lymphoma but is doing quite well. I was bummed not to be able to see it... but we had set up some sitters for me. My dear friend Kellie was kind enough to share her mommy with me. Melanie and I had a great time... till I got overly nauseous and we had to sit in the dark for a long time.

That night they gave me an ambien. I was never so thankful for medication.

Fast forward to the next morning... My friend from high-school's mom was my nurse... I asked her what I needed to do to bust out of there... I wanted my mattress soooo badly. She planned my big escape for me... came in let me know when the doctor was on her way so I could remove my eye mask.

I was going to fake it....

And I did... I faked my way to make her think I was fine... that the headache was gone. My nurse friend took me to my car. and gave me a hug...

Then we started driving... and I realized how important spinal fluid is on your brain... I felt as if my brain were being bounced around my scull. It hurt bad.

I got home... somehow got to my mattress... love that thing... and slept... I felt great.

Now I just need a couple more sleeps like that and I'm sure the fluid will stop flowing.

Oh... and yes... we are still waiting on results.

So here's how you can pray.
1. That my spinal fluid would stop leaking.
2. That the doctors would see what they need to see in the fluid.
3. That I can get back to work soon.
4. That my head would feel better.
5. That I would be able to rest... I'm awful at resting...

xoxo-me

43 sticks...

2011-12-14T14:53:00.000-08:00

Well that wasn't easy... I was supposed to be in for 5 hours... it ended up being three days and two nights. I was leaking spinal fluid... went through one lumbar puncture and 2 epidurals (while they were trying to do a blood patch) Apparently you need blood for a blood patch... I didn't have any.

In those 3 days I was stuck 43 times. The anesthesiologist couldn't even get an IV in.

I'm now home. Resting.

Please pray my spine will heal... and the fluid would stop leaking. My headache would go away. And after this we will get our answer.

Thank you for praying.
xoxo- me

out and about and Letter to Santa

2011-12-11T22:48:00.000-08:00

Tonight... I dragged Lilly (my walker) to the pier. I needed some time just to breathe... slow down... watch the waves. My goal was to walk to the end of the pier and back...

I didn't quite make it. Actually... I didn't even make it to the first bench. I was about 20 feet away... but the unevenness of the pier boards made it quite difficult to walk... even with Lilly. My mom pulled the car around and picked me up in the loading zone after my "walk".

"I didn't expect that to be so hard.", I told her.

Quite honestly... I didn't expect this year to be so difficult. Last year... I can't remember what I asked Santa for... it was probably something silly... Oh wait... I remember... I asked for a red cardigan from target... I'm pretty easy on Santa most years... Except for third grade... when I asked for Stilts. They were impossible to find... and instead of stilts I got a jailbird outfit... black and white striped shirt (We still laugh about it today... my sis and I got matching shirts.)

So... Since I know that Santa knows about my blog (he has to right?) I decided I'd post my Christmas letter to him here. (Ha ha... this is way too fun :) he he)

"Dear Santa,
I have been a very good, and very brave girl this year. I'm not going to ask you for much this year... But there is one thing I'd really like... And that is for larger veins.

I'm pretty sure you don't make these in your workshop... but if you could that would be wonderful... and if you could please install them tonight... that would also be wonderful.

Oh and also... if you could fill all the hills in orange county with daisies... that would be wonderful too!

xoxo
Love always,
Rachel

P.S. I also want a subscription to Real Simple Magazine... it's my favorite! But I'm pretty sure My Mommy is getting that for me :) "

Well... Tomorrow is the big day... I'm getting my Lumbar puncture... Please please pray that they will be able to get the samples they need. Please pray that I wont have a "dry tap" and also please pray that they can get my vein for the blood sample they need to compare against the tap... it's going to be a struggle... I'm way bruised from Saturday... and my veins are shot.

Thank you for your prayers and support!
xoxo- me

discouraged

2011-12-11T00:48:00.000-08:00

I texted my sister as I sat in the car waiting for my mom to finish putting Lilly in the trunk.

"Well... I have two bruise filled arms, two tear stained cheeks, and two unfinished procedures."

"I'm sorry", she messaged back. She knew exactly what that meant.

We were unable to complete the MRI and MRA... because... my veins didn't want to participate today. The staff would get in the vein... I'd watch the blood "return" and then... It would stop... my vein would collapse.

We went through this process 7... Yes seven... times.

I laid on the table... staring through the "MRA mask" that looks kinda like a hockey mask... trying to give her instructions... Get heat, try my wrist, are you licensed to go through my foot?

My heart was sinking... My cheeks were itchy from the tears of discouragement that I couldn't wipe away from under that mask. What's a girl to do... I had drunk plenty of water... even upped the intake for a few hours to ensure hydration... but my veins aren't very good.

In the car... I sobbed... big, huge, alligator tears.

The whole way home.

Finally home... and totally discouraged... I Sat on my bed... put on Pandora... and "Blackbird" came on by The Beetles (you can play it on my sidebar). I listened to the slow guitar... I slowed my breathing (and sobbing) down... and realized that... I'm going to be ok. Yes, it's frustrating... but... It's life... someday.. I'll get a complete MRI of my brain... this is only the 2nd try.

Tonight I went to our Christmas program at church... I was nervous... I was terrified of being seen with Kandy or Lilly (I decided on Kandy (the cane) instead of Lilly (the walker) because she was more easily hidden) and the questions... I knew I'd face...

(P.S. thanks for reading my blog :) I appreciate all the hugs I got from you at church... and thanks for just smiles and hugs (and no tears)! I needed those. You are amazing.)

And I did get the questions from people who didn't know... I tried not to be cold... but I had had quite the day already... and I wasn't ready to explain it all again. So... I did what any girl in my position would do... I lied..

"yeah I'm fine... It's just standard"

Yeah... I'm not quite sure what that means... but I'd say it... and then look the other way and walk away... I should have thought of something to say beforehand... so I'd be prepared... oh well... it probably was not my best social hour... I'll need to work on my response.

So now... I need to get some sleep... haven't been sleeping well the past few nights... I've only been sleeping about 5 hours.

Please pray for Monday...

1. They HAVE to be able to get my vein so they can draw blood to run against the spinal fluid. It is a must.

2. That I can be strong.

Thanks again for praying for me... and reading my blog... I hope you enjoy it.

xoxo- me

Learning to walk.

2011-12-09T18:01:00.000-08:00

I'm a stubborn student... Any... and I mean ANY, of my teachers will tell you that. I come back with snarky, but extremely funny, remarks to challenges... and I always have my head in the clouds. I'm cooperative... but... stubborn. If I think I can do something one way... I will... If I get corrected... I will ~~prove~~ try my hardest to prove to the teacher that there is more than one way of doing things... In the politest way possible of course.

Today I started physical therapy... with Lilly, Kandy and my therapist M (I really don't know how to spell her name... sounds like Maaaleeeahhhh). After she took my information... and started to realize how funny I am (I really should be on Jay Leno) and boosted my confidence by telling me I have a great outlook on this Mustard Seed... She made me get to work... Yeah... this is where my "I'm going to try my hardest to listen to you but I can't make any promises" kicked in...

She started by watching me "walk", which currently looks a little bit like a jello jiggler rolling across the floor, and then tested my balance and strength.

This is where I got discouraged... something as simple as standing on my toes is impossible for me now...

She told me that today we were working on safety... So I figured... I shouldn't be a mule... and I should actually let her give me some help (After all I am paying her to do that... figure I should let her). Carefully she held my hand and taught me how to walk.... again.

Yes I just said that.

I cracked some jokes, "I learned how to do this 23 years ago... guess it's time for a refresher course" and she laughed... all while trying to keep me... ahem... focused... I told her my mouth works great... I'm an excellent talker... it's just the rest of me that's broken.

She encouraged me to keep taking steps... while realizing how hard it is emotionally and physically right now. (My weakness has increased since Tuesday when my Neuro saw me).

I can tell that M and I are going to be great friends... and Kandy and Lilly like her too...

Before PT I stopped by the lab to pick up my urine collection kit (sounds like fun huh?) Then I headed to the chiro for a couple of adjustments... And after... the hospital called.

The kind man explained my Lumbar puncture to me in great detail... yeah.. he could have really left some of it out.. I'm pretty sure I turned white as soon as he said "needle" and "blood patch" Ewww.

Then my mom and I went to our local organic market to buy some beets and spinach... to help with my iron levels (I'm not allowed to eat beef or shellfish right now)... I had left Lilly in the car... and mom had gotten me a cart to walk with, I'm not so fond of the stares I get with Lilly. This was great until we went to check out... and the man pulled the cart so fast... I nearly had a face to face meeting with the floor.

Now I'm back home... "practicing my walking skills"... mmmk maybe not... small confession... I walked in... got to my bed and have been there ever since... M said I would probably be exhausted and... yep I am... but there will be time to practice tomorrow... before and after... the MRI and MRA of my brain.

Please pray that the MRI and MRA get us answers and help with the diagnosis... and that I don't go completely crazy in the tube of torture... and Please please pray they can find my vein again...
xoxo- me

Scheduled!!!

2011-12-08T14:32:00.000-08:00

Yay!!! I have some great news!!! My lumbar puncture (aka spinal tap) is scheduled for Monday Morning!

She called when I was in the shower (Showering is now an event... apparently legs are helpful)... Left me a voicemail... asked me to call her back. I was discouraged that I had missed her call and when I returned her call I got her voicemail again. Then... she called!

"Ok... We can schedule it for Thursday."

"Is there any way we can schedule it for earlier... I really need to be back to work on Friday?"

Yes... I really do need to be back at work. I have a training I have been trying to take for a future promotion... that I need to finish.

"Yeah.. we can do Monday, if you are available."

Praise the Lord... Praise the Lord.

Thank you for praying for me dear friends. I have been so encouraged by your prayers and letters the past few days.

Today... I even put make-up on... Cause I decided no crying today :)

Seriously... Make-up makes any girly girl feel better (even if I'm stuck in bed... resting...) Love you MAC :) ha ha!

Yesterday While waiting for my MRI I figured out a new use for Lilly... She makes a great foot rest ;)

I stole this from one of my friends on facebook... Totally describes how I'm feeling... good thing I brushed my hair though ;)

Thanks again for your prayers!

xoxo- me

overwhelmed.

2011-12-08T07:00:00.000-08:00

I took this picture a couple years ago on a sister's camping trip... The glistening water, the sweet birds, the green grass... I'm ready for a day of this.

But today... I'll be calling the hospital... trying to set up my lumbar puncture... again... and dealing with disability paperwork... again

(I really don't like calling them. "what's your diagnosis?" "I DON'T KNOW, STILL! But, apparently, at 24 you are still supposed to be able to walk on your own and I can't... The doctor think's this is a cause for concern. And He says I can't go to work." ugh... I really really don't like it... I feel like they think I'm a criminal!)

After that, I'm going to practice walking with my new cane "Kandy" and my new walker "Lilly" Yep... they got names.

But don't worry... I'll also be watching the sweet hummingbirds that fly to my window and drink from the flowers in my window box. Then, I'm going to linger over a cup of coffee... with lots of cream... And then I will daydream... about watching the birds... who walk on the grass... by the lake.

What do you do when you feel overwhelmed?

xoxo- me

Tube of Torture

2011-12-07T17:35:00.000-08:00

Bang, Bang, Clack, Clack, CLACK, rumble rumble rumble, Brrrrriiiig, brrrrrriggg...

I spent over two hours in the "tube of torture" this morning. Thank you all who prayed that they would find my vein quickly. After the first two MRI's and half way through the 3rd he pulled me out...

"Don't move your head, don't speak... I am going to put the contrast in now."

I have the worst veins.. it usually takes a long time (my record currently stands at 17 pokes to find a vein) and it also takes a very detailed description by me of where my vein is located that never collapses.

My head starts to worry... and my heart starts to pray.

"You are going to feel a small poke... now"

"Oh please get it... and don't DON'T blow the vein out!" I thought to myself. "I'm not going through the pain of having the contrast injected in my skin again... Like Last time... That was horrible" (Oh... and Just so you know I remembered to remove my "who ha holder"

lol... Thankfully this time I was at a new facility... I'll never go back to that other one where they shot it in my skin...

"I'm half way done with the injection, do you feel any pain?" He asked

"Crazy man say what?!?! I thought you were still searching for my vein!!! I haven't felt anything go in?!?! I bet he hasn't started...oh wait... there's that taste... wow.. he's good... and kinda cute too... dear sir... can you come do all my mri's? let's go dancing in a field... I'll bring my walker... hmm... I wonder how I'll dance in a field with a walker" Yeah... I thought all of this... in a 20 second period staring at his baby blue eyes... then he finished... put me back in the tube of torture and I counted the plastic screws as he pushed me in... 2-4-6-8 I'm in.

"Bang, Bang, Rumble RUMBLE, WHIRRRRRRRRRRRRRRRRRRRR EEEEEEEERRRRRRR"

Finally I was done... He said he got great pics of my spine... And I told him I hoped he would be there on Saturday for my MRI and MRA of my brain.

After that, my mom and I went to lunch... and I drank a ton of water (got to get that nasty contrast out of my body). Then... we headed to my office.

We had to drop off a tricycle and a hat I had purchased for a family we adopted as a branch for Christmas. (Instead of exchanging gifts we thought this was a nicer option for us.) My stomach had birds in it...

"I don't want to go in... I don't want to be seen... What will they think? What if my clients are there? Mmmk Rachel... this is something you have to do.. the little two year old would be so sad if he didn't get his tricycle for Christmas. Go in... hold your head high... Smile and be ok with your walker. If you are ok everyone else will be too. Remember... you haven't changed... just your body."

I walked in.. my mom held the tricycle and I had the hat in my purse that was strung across my body... My legs wobbled back and fourth. I opened the big glass doors that lead into our lobby..

Heart jumping... sweat coming.... breathe

I didn't see anyone. K... this is easy... drop it and run!!!!! no... that's not right... K... I peaked my head around the corner... leaving my walker unseen.

Then... with tear-filled eyes my boss came and gave me a hug. We talked for a few minutes... And told them about the MRI. And my boss said (about the cute MRI tech), "well of course you found the positive you are Rachel!"

I hugged my coworkers and left... Mom drove me down PCH and I watched the waves crashing on the shore...

It's ok, I'll make it.

Please pray that I can get my spinal tap scheduled... they haven't called me back... and I've called a few times. Please ask your friends to pray for me too... I need prayer coverage bad... Also please pray for healing... and encouragement.
xoxo- me

Update

2011-12-06T21:29:00.000-08:00

So... I waited for what seemed like an eternity for him to call me back.

Finally, he said my name. I held my mom's arm as I hobbled back to the room... I sat in the chair...

"How are you?"

I then spent a minute explaining the previous 3 days... and the progressiveness of the weakness...

He pulled me into the exam room... did a bunch of tests on my reflexes... he held my hand as he asked me to stand on my toes...

My thoughts quickly went back to my dancing days... Oh I remember standing on my toes for hours... hours on end... point and flex...

My wobbly legs threatened to give way... and he quickly stopped the test. Then he disappeared for what felt like an hour. I looked at my mom...

"You know, I'm doing everything in my power not to cry right now." I told her

"I know, me too." she said.

He came in... asked a question... then left.

Then back in for another quick question... then gone.

Then back...

"Come with me... I have some papers for you... we need to set some stuff up."

He explained that safety is my number one priority right now... I needed to go and get a four pronged cane and a walker... tonight.

(Mmmk... When I blogged earlier today... I wasn't really expecting to have to get a walker or a cane... I was hoping that he would have some other suggestion... or that he would tell me I was stronger than I thought.)

Worst part... I hadn't even mentioned a cane or a walker to him... He decided it all on his own... (sinking feeling in the pit of my stomach. )

Then he told me I wasn't going to work for at least two weeks (he wanted 4... but I talked him down)... SERIOUSLY?!?!? This is where the water started flowing... He told me that I needed to get a spinal tap, another MRI and an MRA, and then depending on the results of all of this a possible consult with a neuro surgeon. But hopefully not...

Oh ... and I need to start physical therapy... to help with the weakness... and teach me to use a cane properly.

And... no more driving.

I held it together... I took the papers... I walked out his door... stared at the floor... took a deep breath... then assisted by my mom we walked out to the car. We called the medical supplies shop to find out how late they were open and drove over. My heart sank as we pulled up... and I saw all of the ugly... silver walkers.

Seriously, Lord... hold me.

We walked in... and I spotted it... It was light pink ... with flowers... and... 40 dollars cheaper than the silver one... I asked for assistance... The lady looked strangely at me... I explained that if I'm 24 and have to get a walker... I want a cute one...

That's when my mom started sobbing.... and the sales associate started sobbing.

She quickly pulled it together and adjusted it to my height. Then I asked where the cute canes were... and she found me one that was matching to my walker. Light Pink... with flowers. And four pronged so I wouldn't fall.

She hugged me... and I held it together...

Now... I'm home... I've called my work... sobbed on the phone to my manager... I am so disappointed.

Tomorrow I go in for my MRI, then I have to make my appt. for the lumbar puncture, and then Friday I start PT. Saturday I go for the new MRI and MRA of my brain.

My heart is heavy... my eyes are red from crying... I'm 24 and I have a cane... and a walker.

I know the Lord will bring me through this. He will give me strength. He will sustain me.

By His Grace.

xoxo- Rachel

gumption

2011-12-06T12:24:00.000-08:00

Ever seen the movie The Holiday?

I love it... honestly... It's one of my favorite movies... ever. Not so much because of Cameron Diaz's character... But because of Kate Winslet's character, Iris.

In the movie... She realizes that she has... Gumption...

Then the wonderful Hans Zimmer put music to the movie... and that's where I fell in love...

Yes.. the song Gumption has been on my sidebar for quite some time... (you can play it now... and don't worry it's free) And I'm putting it at the top for today... because... I need it.

This morning I woke up at about 3 am... I had to... ahem... pee. (sorry grandma... what can I say... I'm honest :) he he)

So I stood up... and immediately... I fell to the floor... I collapsed. I crawled to to the bathroom, begrudgingly. Then... I tried to stand up... whack... on the floor.

Shoot... this is getting worse...

I crawled back to my bedroom... and pulled myself into bed. Then I tried to sleep for about 2 hours. Then, oh... that stupid bladder called again, I decided that my one bruise was enough and I called my mom (mmk... I'm just going to give a basket of flowers to the inventor of cell phones...)

"mom... I need help... I have to go to the bathroom"

Now... there is nothing... nothing more humiliating than being 24 and having to have your mom help you go "potty".

She groggily came over, I explained what had happened earlier, then she helped me drag my legs into the bathroom. She then asked when I was going to call my boss to tell her I wasn't coming in... I told her at 7... cause it was only 5:45.

Later she helped me back into bed. I called my boss... left a voicemail... texted my coworker and told her I wouldn't be in. Then went to sleep till the neuro's office opened.

"Hi I need to leave a message for the Doctor."

"mmmk, I'm ready"

I explained to her what happened... then she quickly said...

"this isn't a leave a message for your doctor moment... this is a you need to be seen today moment... Can you come in at 3:15?"

"I'll be there."

So... now.. I've listened to Gumption by Hans Zimmer 13 times... And I think it's helping... Hopefully.. I'll be able to get downstairs... without breaking my neck... And hopefully the doctor can give me something to help the weakness... even if it is a cane or a walker.

I ~~can't believe~~ don't want to believe I just said that.

So please I ask that you pray for me this afternoon... Give the Doctor wisdom... and Give me the gumption to make it. If you feel like it... please ask your friends, family, and neighbors to pray for me ... you can share my blog with them... I need all the prayer I can get.

Thank you from the bottom of my heart.

xoxo- me

anger

2011-12-05T20:26:00.000-08:00

Currently... I'm sitting on my bed... upstairs.

This is an accomplishment.

Who would have thought a year ago I would be so thankful for such a small victory (a small victory that wouldn't have been if mom hadn't helped me up... "Hi... I'm Rachel.. and I'm 24 and I can't climb my stairs"). But here I sit... thankful. I am prayerful and hopeful that this decline in my leg strength will help the doctors to give me my final diagnosis. So that we can start treatment... and hopefully healing.

Today... while I was at work... It took me a couple minutes to get my legs to work correctly so I could step up the one curb in my parking structure.

I was frustrated.

"Why?!?! WHY?!?!"

My hands trembled... badly.

"Why?!?!? WHY!??!"

Then it happened. I was frustrated. I was down... I was sitting on my tall blue chair. I was doing my job... making small talk as I took care of a client...

"how's your day?" I asked her

"terrible... I just got diagnosed with stage 1 cancer"

"I am so sorry"

"I'm just upset cause my life will never be the same... My life is over"

This is where I got mad... Like RED IN THE FACE I WANT TO YELL!!!!

I wanted to tell her about my condition... I wanted to tell her that she was lucky... I wanted to tell her how jealous I was that #1. She knew for certain what she had. 2. It was stage 1 and totally treatable (yes she told me her doctor had come up with a plan...) 3. That she was lucky it wasn't disabling like this stupid mustard seed... and most likely after some chemo she would live a "normal life". 4. That she was 60... she had probably lived most of her life healthy... and some people don't have that luxury.

I wanted to cry for her... illnesses don't make your life not worth living... They don't make your life... over.

My heart broke for her.

Then I felt like a horrible person for judging her... She just found out... And she is grieving... I've been grieving my health since April. It isn't right for me to tell her how to feel. The only thing I should have done was say a prayer for her. Instead... I judged her.

Someone's day can be worse... Which hers was... Mine was just weak... weak and waiting...

xoxo- me

it's ok... I'll make it

2011-12-04T21:31:00.000-08:00

The sun was peaking through my blinds this morning as I woke up. I had pulled my light comforter up to my chin, I was freezing. (It's hard for me now to keep my body temperature regulated. If I get too warm... I loose my vision. ) I stared up at my giant wall clock I have hanging near my closet that I can see without my glasses. I had an hour and a half left before I needed to leave for church.

I was ready for some alone time. This past week has been busy, and most of my time has been spent with family, friends, or work. My heart was heavy. I had been doing some research about my condition... and finally I allowed myself to cry. I cried for about a half an hour.

In some ways I've minimized the seriousness in my head of this sickness... When I tell people their reactions are a lot more serious than the humor I use when I tell people about it. I laugh because if I don't... I don't think I will stop crying.

I find myself saying all the time, "it's ok... I'll make it". And quite honestly, I think that I am reassuring myself most of the time of that.

So... tonight... my heart is heavier than normal... the weakness is bad... so bad... I can't climb my stairs by myself. Quite honestly... I think I'll be sleeping in the living room tonight. I cried after church in my car because... curbs are hard. Who would have thought that my body strength could decrease so rapidly this week.

But I trust My Lord. He will see me through it

2Cr 12:9

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

2Cr 12:10

For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

So there's another sight into my heart and mind. It's a struggle... but it's ok... I'll make it.

xoxo- me

broken glasses.

2011-12-03T00:01:00.000-08:00

I dropped two drinking glasses today... they broke.

This week has been tough for me. My heart is heavy. I know that God has a plan. I know that he is using me. I know that He is allowing me to have this for a reason. I know that he hasn't healed me yet for a reason. And yet... I still struggle... With the desires...

I want to not have to worry about tripping at work.

I want to be able to take a really hot shower and not worry about getting weak.

I want to be able to feel normal.

I want to be able to take two glasses off of the kitchen shelf without shaking, dropping them, and watching them break into a million pieces.

But for now... I wait while I want.

My heart sunk as I dropped two of my mom's drinking glasses... yeah... they were cheap... no they weren't family heirlooms... and no she wasn't upset in the least bit... but it was a physical reminder... My tremors and spasms are present. They haven't gone away.

I know that healing will come. Whether through modern medicine or a miracle. I believe modern medicine is one of the ways God does miracles now. And I love miracles.

I am ready to be healed. And even if it never happens on this earth... I will be whole in heaven. And I will be healed.

xoxo- me

rambling...

2011-11-30T21:39:00.000-08:00

This is a rambling blog... Just picture I'm talking to you... and you are having a hard time getting a word in... ha ha! Sorry for the randomness... but tonight... I'm not feeling creative... I'm tired... but I know you are waiting.

I went in for an EEG today. My new neurologist ordered it. He was so encouraging...

"We will figure this out for you... and treat it."

I was thrilled. Now... I just want to see him follow through on that.

I sat in his office... Listening to his testing plan... Trying to figure out how to get it all done before the 31st of December... When I have to meet all of my deductibles again... Am I nervous about that? yes... My medical bills are not horrible... but... I've gone through a good part of my savings... the fun part... that was supposed to buy colorful couches and floral curtains. My dreams are on hold.

I decided this week... I should buy one lotto ticket... Just one... Just to, you know, give God the opportunity to let me win... Ha ha!!! I haven't done it yet... but maybe I will... I'm not a gambler... and I know that that dollar can earn me interest in my savings account, but you know the email joke that went around a long time ago about the lady who was praying for God to let her win the lotto and God said... well could you at least buy a ticket???

Yeah... I figure I should do my part ;-) mmmk... maybe it's just silliness now that I write it out.

Anyway... I loved the new neuro... he has ordered a bunch of tests... mri's, eeg, a test where I get to keep my pee in the fridge... yum. (dad... that yellow drink is not a drink!)

The eeg wasn't horrible at all... but I did leave there with my hair so sticky... and I had to go to work... so... Yeah.. it was a bad hair day.

I went to my chiro tonight.. he was thrilled about all the testing... and can't wait to see the results so he can better treat me.

Tonight... I'm in quite a bit of pain... my leg feels like it's about to fall off and die. I would be fine if it went numb tonight... cause this pain is horrible.

and now... I end my rambling... it's time for me to get some sleep... (I had to get a lack of sleep for the eeg apparently they get a better reading if you are tired hence... the exhausted... but hopefully informative blog. )

Please pray that these tests are informative... and that this doctor would have wisdom...

I'm emotionally exhausted tonight... totally drained.

xoxo- me

Cotton

2011-11-28T23:07:00.000-08:00

I can remember it so clearly...

I was wearing my tulip dress.. it had individual petals for the skirt, I had owned it since kindergarten... It was one of my few store bought dresses...and my sweet mom and grandma kept adding longer petals as I grew... because I wasn't going to stop wearing my tulip dress... even as a big first grader.

We were sitting at the lunch table... My girlfriends and I were talking about the dance moves we were going to practice at recess. We chatted about the songs we would sing on our way out to the playground... And who would be the leader. Then it happened...

That boy... the one who would eventually become one of the heads of ASB grabbed his milk carton held it near his hips and yelled...

"MY WIENER PEES CHOCOLATE MILK!!!"

And he squeezed the bottle all over our sweet little mary jane shoes.

Now... my grown up Rachel mind laughs hysterically at the silliness of this little boy... boys will be boys...

But my six year-old-self (with no brothers... raised in a girly... ahem... super girly... even the dog was a girl house... my poor dad) was not only grossed out but absolutely devastated that the chocolate milk splashed onto my feet... and disgusted that he said the word wiener... at that point in my life I was pretty sure that "wieners" were a tale of fiction... girls don't have them. (Who am I kidding... I still think they are a tale of fiction ;) )

All I knew was that we weren't allowed to say that word... unless we were talking about a hot dog... oh... and my mom wanted us to use the proper words for the bathroom... like urinate and defecate... Yeah... ever seen a six year old run up to her teacher and say "Mrs. Smith... I have to defecate!!!" Thanks dad for telling her that pee and poo were ok to say :) ha ha!

That afternoon, I went home... crawled up on my mommy's lap... stroked her hair and told her all about my "horrible day"... How embarrassed I was... and how mean that boy was to squirt his chocolate milk all over my beautiful shoes (yeah yeah... the love of shoes started early).

She looked at me with her big blue eyes... and with the sweet humor that she has said, "Should we pack you up in a box of cotton and ship you off to the moon?"

"Yes", I said with the tears falling down my face.... only slightly more dramatic than I should have been.

She then told me I needed to tell my teacher (she didn't want my shoes to get ruined... or my feelings hurt... and Yes my mom was great... She taught us how to stand up for ourselves... and get the help we needed.. she didn't do it herself) Later that week... The boy wrote all of us girls an apology letter... and I truly think it might have helped him become the kind guy that everyone voted for later on.

Today I sat in my break-room... texting my mom... Nearly in tears... because of this stupid numbness and pain...

Me- I hurt so bad.

Mom- So sorry

Me- Tremors are bad too. :(

and then she pulled it... the one saying that will always make me smile... her combined humor and sympathy in one saying...

Mom- How about a box of soft fluffy cotton and a trip to the moon? ;-)

Me- Sounds good.

And it was with that... that I knew I would be ok. I need to stand up to the doctors tomorrow... And ask them to figure me out. I need to push... And be pushed... poke and be poked...

fill out the pile ... pile of new patient paper work I hate so much...

But tonight... I think I might, just might, get a box and fill it with cotton... and ship myself to the moon.

xoxo- me

P.S. Do you think I could fit my mattress in my box for the moon? he he :)

tears

2011-11-27T01:28:00.000-08:00

It's been one of those nights...
One of those horrible nights.
Oh I wish it would just go away.
This horrible thing...
It has forever changed me.

The pain is way too strong.
I'm trying to hold on, to my tears.
But I don't know... I don't know if I can.

I am trying to be strong.
I am trying to hold on.
But my rope seems to be fraying.
And my hands are slowly slipping.
Slipping... Slipping.

But there You are.
You hold my heart.
You caught me like you always do.
And you reminded me... oh you reminded me.

You wont let me fall.

You wont... let me fall.

Oh I'm scared.
I want out of this valley.
But... for now... I'll let you carry me through...
Just carry me through...
But please... please...

Don't let me go.

The big appointment is this week... My heart is anxious. My body is tired. My eyes are tired of crying... It seems as though I am finally to "the crying point" you know the point where... I've been strong for so long... and now All I want to do... is cry? Yeah... I'm there... it's been almost 12 months of medical issues. And I've held back the tears for so long... but now... I think I need to invest in kleenex stock.

I'm praying for answers. Hopefully this new doctor will have some... and if not...

He will hold my heart and dry my tears. Just like always.

Sister trip to the GRAND CANYON

2011-11-20T21:55:00.000-08:00

A couple of weekends ago my sister and I took a trip to the Grand Canyon. We had missed our annual camping trip (ahem... because of this silly Mustard Seed) And I really haven't been up for all the work that camping entails.

Last Fall we took a trip to the Grand Canyon with some fellow leaders of our jr high and highschool group at church. We had enjoyed ourselves so much (except for the NASTY hotel we thought would be wonderful... and ended up looking more like a crime scene... and when your pool is "milky" yeah... you just don't go in) that we wanted to go and spend more time. But this time... we were booking through an agency... so we didn't get a nasty hotel.

So... We visited our local AAA office and booked our trip.

Now... This trip took place over the weekend of my 6 year surgery anniversary. I have celebrated it every year (I celebrated being healthy... and life... this year, that was a little hard for me. I was celebrating the fact that I am still alive... and I am getting through this new challenge.) ... and I always take some time off around that time... makes a good excuse to take a vacation :)

So after work on Wednesday we headed off to Kingman Arizona. When we pulled into our hotel it was 11 pm California time. And it was FREEEZING! We went into the little motel we had booked months before (not part of the AAA package) and checked in.

The receptionist sent us across the parking lot to our room on the second floor... with no elevator (I'm exhausted at this point... legs are weak... I prayed on every step... "Oh Lord let my legs not give out") We make it up to our room... carrying way too much luggage for just one night (but we are girls... and have way too many choices)

Naomi slides the key in the door... and it doesn't open.

I slide it in... it doesn't open...

We push our body weight against the door... and it doesn't open...

There is an icicle forming on my nose.

Poor Naomi walks down the stairs... across the parking lot... to the office and tells the lady of our troubles. They then walk over together... the lady stands down stairs and yells at us what to do... Pretty soon she gets frustrated... (our fingers are now ~~falling off~~ wishing we had been wearing gloves) and she comes upstairs.

She tries the key... it doesn't work... Then with all of her body weight and a few jiggles of the handle she pushes the door open.

"See it isn't that hard" She says

Naomi and I get into the room and lay on the hardest most uncomfortable beds known to man (I have never missed my mattress... yes... that's a link on the word Mattress to the kind of mattress I have... and yes... I spent enough money on it... but... It has literally helped my health so much... I am so thankful I got it. ) Naomi Gave me... all the pillows... and I made a little nest for myself. And almost made it comfortable.

The next morning we ate at the Cracker barrel... it was amazing... I loved it.

Then we hit the road.

We had to stop at the Truck that inspired Mator from Cars.

And I had to pretend to use an outhouse :)

Then we went to the Grand Canyon Caverens... I hate caves... with a passion... But somehow... Because I love my sister so much... she Got me to go down the elevator and take the tour.

But there was no way I would ever sleep in the Hotel in the cave... Yes you can sleep there for 700 bucks a night.

It was after this picture that I surely thought I would die... He started talking about earthquakes in the cave... and I really really needed to get out. The whole tour had railing (which I have never been more thankful for) and I made it.

Don't I look thrilled... Yes... this is after...

Then we ate at a little place called the roadkill cafe... It was wonderful... cute and fun... We had Chili

Later that afternoon we arrived at The Grand Canyon Railway Hotel in Williams Arizona... it was wonderful... Clean and pretty... and the mattresses weren't... too bad..

The next morning... We got on a train to go to the grand Canyon :)

Sorry about the finger in the shot... You can't be too picky when you ask strangers to take your photo :)

That evening as we ate dinner... we watched the sunset over the Grand Canyon... and yes... our food looked better in person :)

On the Train ride there... this Gentleman made us laugh with his creative harmonica entertainment :)

That evening... We almost died...

Ok... that might be a bit of a dramatic statement. We were trying to get to a ranger talk... we thought the path was lit... Let me tell you... when the sun goes down... you really can't see much in the grand canyon... We were walking... and I reminded Naomi that I don't have much balance... and I fall easily... and we were on the edge of the CANYON! so she decided to walk on the edge side... Soon... there were no more lights on the path... and she looked at me and said, "Do you think we should turn back?"

Now... I was pretty sure some crazy man was going to jump out... and throw us over the edge (realistic right?)

Then she told me she was more worried about the bears... and mountian lions... and I decided her fears were more realistic and we turned around and went back... in the dark. Finally when we were safe and sound in our hotel I called my mom...

"mom... we almost died"

She fully knows my over-dramatic tendencies... and asked for clarification... after I explained... She said "You could have died... I'm glad you are safe"

(she was probably worried about my balance and falling issues not mountain lions or crazy men who throw people into the canyon... ahem... wild imagination.)

Then... Naomi and I went to sleep... because the next morning... we were being crazy folks... and waking up at as I always say... and pardon my rudeness "the butt crack of dawn" (can you tell I have a bit of early morning hatred?)

So that we could see the grand canyon at sunrise.

Do I look cold?

Mmmk... these are out of order... not sunrise... these were from the day before... isn't the canyon amazing!!!?!?!?

Now back to sunrise....

Here we are... at 5 am... on the bus... going to see the sunrise... Naomi the early bird... and I the night owl...

but it was beautiful

absolutely gorgeous!

after sunrise... we ate breakfast at the fancy hotel at the grand canyon... cause... we deserved it...

We then spent the rest of the day... riding the bus from place to place taking in the view (this is how you "hike" if you can't... use public transportation... it was great)

we ate lunch on the edge of the canyon... so fun!

That evening we rode the train back to Williams and... sorry.. these are crooked...

We went on the Polar express train... a great way to wear your pjs in public without looking like a dingdong.

We ended our trip... back on route 66 and laughed the whole way...

I saw a wild donkey... and Naomi saw some wild boars... I am pretty sure my donkey was one of the descendants of the donkey Jesus road when he was on the earth ;-) But Naomi thought he was related to Eeyore.

I am so thankful for my wonderful sister... She had to be the organized one on this trip... and made too many trips for me to the car... train... room... because of my weakness... but we did it... we had a great trip... and I am so thankful...

Mustard Seed

2011-11-06T00:25:00.000-07:00

"Oh great" I moaned as I put my head in my hands and leaned on my desk at work.

"What's wrong?" My coworker asked.

I looked up at him... and immediately he could see what I was disgruntled about. The left side of my face was twitching so badly it looked as if 2 tiny people were using it as a trampoline.

"It's just the stupid disease...I hate this thing." I said... trying to figure out if I could calm it down at all...

Whenever I get the least bit tired, exhausted, or hot... it starts going... as if mexican jumping beans had made a home inside my skin. Sometimes it wakes me up in the middle of the night... especially if I get too hot. Lucky me... It's just another one of my lovely symptoms... The big bummer, just like the hand tremors, it's visible to others. My favorite symptoms are the ones people don't notice... Like the bladder issues (well.. I hope no one ever has to notice that one!!! ha ha!!!) or... the exhaustion... or the weakness (eh... I guess my falling makes it kinda noticeable) or the pain... no one can really notice pain.. But then, people comment all the time about the visible symptoms... how my pupils are different sizes... "yeah... I know... no... I'm fine... yes I can see" (well... most of the time... just please don't report to the police that I'm driving!!! ha ha!!!) . Or how my hands shake... or my jaw chatters...

"Let's call it your Mustard Seed" he said

I liked that.... immediately... actually loved it. He knew that I didn't like to call it by name especially since we don't have a "full" diagnosis yet. And having a code name for it... makes it less obvious to those around that something is off... for example... If I was starting to have really bad tremors... I could say "I'm going to check on my mustard seed in the back" mmmk... maybe that would be ~~really weird~~ totally noticeable that something was up... but it does make the situation easier in some way to talk about "it" especially on bad days.

And a mustard seed... I love the mustard seed... I even have a necklace with a tiny mustard seed in it to remind me..
Luke 17: 5 says
The apostles said to the Lord, "Increase our faith!" And the Lord said, "If you had faith like a grain of mustard seed, you could say to this mulberry tree, "be uprooted and planted in the sea" and it would obey you.

So here I sit... with my "mustard seed"... The funny thing about mustard seeds are they start out so small... tiny... and they grow into a giant bush... and SPREAD. And although I don't want this disease to spread like a mustard seed... I would love for my faith to spread... and I would love for it to grow bigger.

I just need to trust God... Have faith in him to heal me.

Even if it starts out ~~small~~... tiny... like a mustard seed.

xoxo-me

doctor wars

2011-10-31T23:01:00.000-07:00

So... One of my doctors called me this evening... He is probably my favorite one (Ahem... remember the one I "professed my love to" when I was coming out from under anesthesia... yeah that one...) He was calling with some results of tests he had run... and was just checking up on me and the other doctors... I appreciate how thorough he is and the fact that he really does care... and wants to see me get better.

I explained to him how I was kind of in a waiting pattern... with my current neuro... who doesn't seem to want to test any further... and I was waiting to see the new neuro at the end of the month...

"I'M CALLING HER RIGHT NOW!!!" I could hear the anger in his voice...

What was he angry about?? well... I hadn't told you all this yet, but I think I am safe to now because...well... we know for sure that this isn't the case... The current neuro wanted to push all of my symptoms to a diagnosis of... get this... "anxiety". Now... I've never dealt with anxiety... I've had those days where I was nervous about a test ... but never... clinical anxiety.

"There is no way that this could be all caused by anxiety!" he stated... I could tell that he was beyond frustrated.

I've been frustrated with it too... and my urologist... and my GI... and my infectious disease doc... and my obgyn... and my general... no one agrees with anxiety... not one of them.

He asked me if I was back at work... I replied yes... and then he came back with his normal...

"I could tell... Your stock went back up"

(Funny thing... every time I go out sick... he says that the stock drops... My doctor apparently holds quite a bit of stock...and wants to ensure that I can work, cause I'm a lucky charm... ha ha!!! )

He then promised to talk with the multiple neurologists... and try and push them to get that diagnosis quickly... This is why he is my favorite...

Even though he may be starting a war between my doctors... I am grateful he is willing to shoot that arrow :)

xoxo-me

dreading... dreading... dreading

2011-10-25T23:23:00.000-07:00

So sorry friends... I've been an awful updater lately.

The past few weeks have been filled with some good and some bad... Some new friends... and some old. Some happy times... and some that have been terribly disappointing.

Yesterday... was another "paper napkin day". I took the day off from work... I was dreading it... I had been dreading that test since I was told I would go through it... It was a 2 hour test... at the urologists office... Yeah... Sound like fun to anyone?

Sunday morning, my mom and I were driving up to church...

"So... after I drop you off for the test I figure I'll go shopping"

"Um... I need you to come with me"

This led to a "bossy Rachel" who wasn't really all that thrilled with the idea of going through this alone. Now... my sweet mom probably just thought I would be more comfortable by myself... but.. come on... no... I really really wanted her there... at my head ... but there. Cause... I'm 24... I still need my Mommy and I'm not afraid to say it :)

My dad texted me on Sunday morning... "Eva is singing "Blessings" at offertory"

My eyes welled up at the thought of that song... It has been my prayer since the beginning of all of this. The night before had been awful... my leg felt horrible... I lost my vision... and that awful burrowing at my ankle was driving me nuts. I had laid in bed humming "It is Well with my Soul" over and over and over again... and the "Blessings" And that one line from "Blessings"

"What if trials of this life are your mercies in disguise."

It rocks my soul. Every time.

We sat in church. She sang. Quietly, I held my tears in... my mom sobbed in the pew next to me. Shaking so violently that the entire pew was moving. (she's a physical crier ;) she doesn't cry quietly... no single tear for her)... Proudly, I held it together... for almost the whole song...

until....

"What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy"

Then... my cheeks were wet. I long for heaven. I long to see my Savior's face. I long to have him hold me... I long to worship at his throne.

Yesterday... as I sat on the blue table... as the sweet nurse (who made the procedure not so bad) put electrodes in places I can only imagine.... I prayed... "Oh Lord, use me for Your Glory"... it was really the only thing I could think... when going through such an awful test.

I cried a few times... because my nerves are so sensitive. She completed the test...

We waited in the room for the doctor to come in...

I spent 3 hours at the office... And I got 3 diagnosis's... and a referral for a second opinion of a neurologist. I was beat... I was exhausted. My heart was heavy... this horrible disabling disease that we've been "trying to avoid"... just might be it. I'm not ready to share yet... but... boy... is my heart heavy.

so please keep me in your thoughts and prayers... please pray for my strength... and that if there is any way possible... that my appointment with the new neuro could be moved up. It's over a month away. And once again... I'm dreading it.

"Oh Lord, use me for Your Glory"

xoxo-me

Firm Foundation

2011-10-09T23:04:00.000-07:00

This morning, I stood in a room filled with friends and family... and I've never felt so alone. I was going through the motions... I didn't want to be there. Last night was horrible. The pain... the numbness... the tingling... the ache... the tremors... the vision issues. It was all there. I didn't want to get out of bed.

I pried myself out of bed... 10 minutes before I needed to leave for church. My mom was walking out the door.

"Save Rachel a seat" my sis yelled down to her.

"I'm sitting with my girlfriends" She replied

My dad left for a work conference this morning... and my sis was going to help out in highschool group...

"Could I sit with you?" I yelled down

Now... here's where I probably overreacted... she took more than two seconds to respond with... "of course you can!"... and I got offended in my head... So... did I let it go, and sit by her in church? of course not... Well that was partly because I was late... and being as short as I am... I couldn't find her... So I sulked in and...

I sat where I normally sit... except I was all by myself.

Could I have sat with friends... of course... Was I being a stubborn brat and choosing to be miserable... unforgettably yes.

But I think God knew what he was doing... when He allowed me to throw my two year old temper tantrum this morning...

He was allowing me to be molded... He needed me to be alone... So that he could remind me... that He was molding me... He was sanctifying me... I needed Him... To help me to listen...

We finished the responsive reading... which quite honestly... I don't even remember what it was... I was sulking at that point about being single and sick... and not having a significant other to support me. I was thinking about how weak I have been... how tired I am of falling... literally... and the bruises... and coming up with stories about how I got them... I was asking myself how I was ever going to date again... How do you tell someone... that you aren't healthy? How do I fake it till they get to know who I really am? How can I hide my tremors and scars? How do I hide my falling... Oh.. why am I even worrying? Do I need to hide it? Is that dishonest? Should I be outright about my condition? Why am I even worrying about this?

Then I looked down to see what was next and it was the song...

"How Firm a Foundation"

"great" I thought to myself... " Yeah.. I need a firm foundation... to keep my legs up... Man... Why this song... I've never really thought about this song... Maybe I should pay attention."

Then our pastor began to sing... and I listened... really listened to the words I've sung so many times... and it hit me... God was talking... directly to me.

"How firm a foundation, ye saints of the Lord,
Is laid for your faith in His excellent word!
What more can He say than to you He hath said—
To you who for refuge to Jesus have fled?

Fear not, I am with thee, oh, be not dismayed,
For I am thy God, and will still give thee aid;
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by My gracious, omnipotent hand.

When through the deep waters I call thee to go,
The rivers of sorrow shall not overflow;
For I will be with thee thy trouble to bless,
And sanctify to thee thy deepest distress

When through fiery trials thy pathway shall lie,
My grace, all-sufficient, shall be thy supply;
The flame shall not harm thee; I only design
Thy dross to consume and thy gold to refine.

The soul that on Jesus doth lean for repose,
I will not, I will not, desert to his foes;
That soul, though all hell should endeavor to shake,
I’ll never, no never, no never forsake."

"I love you Lord" My eyes filled with tears... "Oh what a sinner I am. Thank you for reminding me that you are going to bless my troubles... and you have given me a firm foundation to stand on. "

Now I sit... embarrassed by my frustrations over my illness... but knowing that somehow... He is using me through this.

xoxo- me

Update

2011-09-28T20:39:00.000-07:00

First off... Sorry for the delay... I've needed some processing time.

My palms were sweaty as I waited in her office. A plan... Waiting for my plan. My thoughts wondered... could I get a diagnosis... could this be the day? There was so much hope... So much hope for relief. She called my mom and I back... My heart raced as I sat in the chair. Our appointment lasted almost an hour.

And my heart sank.

This great plan that I had been waiting for was... once again...

Sit and wait. Watch your symptoms... and check back in 6 weeks.

My mom asked me if I wanted to go to breakfast... Angrily I got in my car... told her no... I had to be at work ( which wasn't a lie... I told my boss I'd be in at 11... it was 10:40). I got to work... and when they asked me how it went... I broke.

Tearfully, I explained how frustrated I was. This was supposed to be THE PLAN! And now... I saw no relief in sight.

That week... My weakness got worse.. I fell... multiple times... Into a planter... onto the floor... and up my stairs... yeah... I fell up them... and sprained my wrist. Nice.

I went to the doctor to make sure it wasn't broken and it wasn't... just a really bad bruise and sprain. I was so frustrated... the falling... the vision issues... the pain...

My boss suggested trying a more homeopathic doctor, and I remembered one that a friend of mine had suggested.

That night... I researched him... He's a Christian. He's a Chiropractor. He's a kinesiologist. He's a herbalist. He's a published clinical researcher.

I was at the end of my rope. The next morning I called and made an appointment.

My first appointment was on Monday. He carefully pricked my finger and took my blood type. (I'm A - in case you ever want me to donate blood to you :) ha ha! no... don't think you want my blood :) ) He carefully examined my eyes and pupil responses and measured my blood pressure...

"wow... this is a strange chiropractor" I thought "but I'm at my last resort... 18 or more (don't know... I lost count) doctors in 5 months... give him a shot Rachel"

He adjusted my back... and I could feel my foot... for the first time in 3 weeks with no burrowing feeling.

I was hooked.

He told me to come back on Wednesday and we would go over all the tests he did.

The burrowing feeling came back the next morning... but slightly less... then this morning... it was back to it's full strength.

So today... I went in... hopeful. I woke up this morning waiting to go back... My weakness was back... I tripped but caught myself at work (I'm fine... just... embarrassed). He discussed my saliva ph balance, calcium levels, blood pressure, temperature, adrenal gland findings... and I was thrilled... He had a plan.

So... onward begins the process. I just pray... that it will work.

xoxo- me

You have my attention now.

2011-09-19T19:52:00.000-07:00

You've been chasing me.

You've been calling my name.

But I have a hard time listening.

I told my mom this morning about how I was anxious.

I didn't want tomorrow to come... but I also wanted it so badly.

You prepared me for this illness...

This was all in Your plans.

Even as hard as it has been for me... You know exactly how much I can take.

You helped me study Your word... hide it in my heart.

You've told me not to be anxious about anything...

But, as You know (and only You really know) I'm not very good at listening.

My hands gripped the steering wheel tight this morning as I got in my car.

I wasn't sure I would make it through my day.

I was anxious.

But You knew... You knew exactly what to give me.

As I was stopped at the first stoplight before I got on the freeway...

You had this waiting... for me.

You have my attention now...

Oh Rachel... Don't be anxious for anything. But in everything

through prayer and supplications. Let your requests be made known to God.

I didn't need a still small voice today... I wouldn't have listened...

I needed a billboard. Or maybe just a license plate.

Just to remind me...

That Your peace will guard my heart.

And I need to think on good things.

Things that are worthy of praise.

Oh Lord. You are good all the time.

And I know....

You hold my heart.

So hold it tightly My King.

Don't listen to me when I think I can do it on my own.

I need you.

Just please... I pray... hold my heart tomorrow.

And guide me through this Deep Valley.

More nerve testing

2011-09-12T17:48:00.000-07:00

I wasn't the happiest person at work today... I was stressed... I didn't want to go in this afternoon for my nerve testing.

My coworkers and our area manger, who was there "auditing" us today, were so sweet. They tried to make me feel better all morning... and wished me luck as I walked out of our big glass doors... and told me to get some ice cream afterwards. I walked out of the office shaking... not looking forward to the pain I would be feeling in 25 minutes. We drove... Distractedly talking about current events. And I was hoping... somehow she would call and cancel my appointment.

She didn't.

I walked into the cold halls of her office building, remembering the sound high heals made on tile as I walked in my soft "I wont fall over as easily shoes", and wondered when I would be able to wear heels again. Oh how I miss the clackity clack of my shoes. Sounds kind of silly doesn't it?

I signed myself in and the doctor waived and smiled at me from behind the counter.

I ran to the bathroom. "Maybe if I pull the fire alarm... I wont have to do the test" I thought to myself...

After deciding that I ~~didn't want to~~ couldn't afford to pay the fine... I returned to her office and she called me back. I sat on the high table... She had to get a stool for my 5 foot 2 and 3/4 of an inch frame. And she adjusted the paper under my head.

"Rip, Rip, Rip" the sticky electrodes went as they were pulled off their paper backing... I knew just what was coming.

"BUUUUZZZZZZZZZZZZZ" My body jumped. ouch.

"BUUUUUUUUUUUUZZZZZZZZZZZZZZZZZZ" ouch again

"Try to hold still" My doctor said

I distracted myself by asking her about her upcoming conference in San Francisco and tried to remember where I ate when I visited S.F. for a choir trip 8 years ago... So I could give her good recommendations. All of my "thinking" was too no avail, I couldn't remember the name of that little Mexican place.. not in this pain.

She apologized after the big shocks and let me rest for a moment before she continued with the needle part. We talked about my new symptoms... and at my follow-up with her on the 20th she said she would have a plan. She gave me a hug... told me she was proud of me and what a nice young lady I've become.. and sent me on my way.

A plan... that sounds so nice. I just hope it doesn't involve more testing.

xoxo-me

betrayal

2011-09-11T00:55:00.000-07:00

I walked into the bathroom downstairs, I rested my hands on the white porcelain pedestal sink and looked at the empty wall with two screws sitting empty waiting for a mirror to be hung, and I knew that I needed to look at myself in a mirror... and tell myself

"You are going to be fine"

But, we have yet to buy a mirror for that bathroom. Every mirror we find is either too large or too small. And nothing looks quite right.

I grabbed the chrome soap dispenser and found my reflection in the top. (it was almost comical... really Rachel? You are talking to yourself through a soap dispenser?)

" You are going to be fine. You are going to be fine. You are going to be fine." I said it over and over.

My eyes looked sorrowful. Why did that conversation bring up so much emotion? I had lied to my friend and said I was fine... I didn't care about the story I was just told. Although, truthfully... it dug deep into my soul. It opened a long-ago wound that had been sewn shut and with as much force as possible shoved grains of salt into it. I know that my friend meant no harm by sharing the story... But... The feelings of betrayal came back just as strong as the day I realized I was betrayed.

"Oh Lord... Heal my heart." I prayed.

"You are loved. You are strong. You are His" I assured myself while I looked into those deep golden brown and green eyes of mine.

Then tonight... As I sat thinking about betrayal... I couldn't help but think about how much worse it must be for God when I sin. When I betray him. It is surely worse than my silly earthly friends who have betrayed me. I need to seek him. I need to seek righteousness.

Tonight I couldn't sleep. But now that I've gotten my feelings down on paper I'll be able to.

Have you ever dealt with betrayal? How can I pray for you?

xoxo- me

P.S. My darling Josh is singing on my sidebar :) Love him... Love this song "You are Loved". Listen to it and enjoy :) xoxo

nerve testing... and new normal.

2011-09-10T09:02:00.000-07:00

"You are stronger than you were last time" My doctor says as she points to my seven and a half inch scar going down my chest.

"Well... I've had to learn to be." I told her

"This is going to hurt worse than 6 years ago. You were just a baby then... I will be using full electricity. I need to get good results."

I couldn't help but think... Great... I sobbed like a baby last time I had my nerves tested. But she is right I am much stronger than I was... But today I don't feel very strong.

She hooked me up to the machine. Green wire... red wire... and black wire... I remember from my dad's lessons on electricity when we put in new plugs that black wires mean... death. Yeah... Why am I letting her hook me up to this machine again? I wondered.

She sent the first test through my body as it jumped and shook uncontrollably... than again... and again... and again... for a half an hour. Then she begun with the ( don't read the rest of this paragraph if your squeamish) other part of the test, the black wire became attached to a needle which she inserted into different parts of my muscles. That hurt the most as the electricity surged through my body.

She finished... gave me the preliminary results... which were... ~~big shock here~~.... mostly normal. She needed to look at the results a little more carefully... before she gave me the final results.

Then she decided... because of the results... she needs to check my legs... So guess who gets to have more testing done next week... yeah... me. yay. But I'll be brave and strong... and it'll get done and I will go home and sleep for a good 4 hours from the exhaustion of the electricity.

My pastors and some elders from my church came to pray for me this week... It was such a blessing. I am so grateful for my church family and the support they have shown my family through our lives.

This week... I'm letting go... I'm letting go of my plans... and accepting His. I'm trying to accept my new "normal" and deal with it accordingly. I'm back to work full time as of two days ago... it's not easy... but it's better than sitting at home all day... Did I ask my doctor's if I could go back full time? no... of course not. I know what they would have said... and quite honestly... I need normal in my life... even if it's "new normal" meaning... I go to work in pain... I come home in more pain... and it's hard every minute. But I make it :) and it's my new normal... I've let go of what life is "supposed to feel like" and accepted my new normal.

The only thing is... I'll still be looking for answers.

xoxo- me

P.S. the song for today is "I'm letting go" ... Enjoy :) xoxo

Medicine woes

2011-09-05T23:20:00.000-07:00

The light shines through my blinds too brightly in the morning. My eyes have a hard time opening... they feel as though someone has placed quarters on top of them. The weight is almost enough to make me just roll over and go back to sleep.

But the hummingbirds keep chirping as they drink from the flowers in my window box. And I can't miss a single opportunity to watch them flit and fly. And for them... these wonderful creations God has made... I'll pry open my heavy heavy eyes, and put on my glasses, just to catch a glimpse.

My eyes haven't always been this heavy... but lately... ever since I started this medicine that is supposed to help my vision (haven't really noticed any change yet) I am just dragging.

The doctor said this is normal... It is going to make me sluggish. Great... add sluggish to my already exhausted body and I'll never get out of bed... (oh and I just bought a new memory foam mattress... one that keeps cool... it's amazing... at least now I can sleep well... and slowly wake up.)

I guess the silver lining in this medicine woe is that... from my bed... I can watch the hummingbirds :)

xoxo- me

Pill swallowing and happy update :)

2011-09-03T23:53:00.000-07:00

My alarm clock on my phone rang too early on Tuesday morning... I got dressed in a "belt friendly" outfit... with a scarf to hopefully tie around something or use to hide the hideousness of the recording machine while I was at work. My mom and I got into the car and she drove me to the G.I. doctors office where they whisked me away into a small room to hook me up.

"Here... swallow this." the nurse said as she handed me a blinking pill.

seriously... it looks like it should have been a part of (enter robotic voice) "Disney's Electrical Light Parade"

"This goes against every grain in my body" I told her as I picked up the blinking pill that was ~~bigger than my hand~~ larger than the top of a pencil.

I put it in my mouth and could feel it slightly vibrating...

I took the tiny... tiny glass of water and... gulp.

I swallowed a camera.

After that I went to work and complained about how hungry I was to ~~all~~ most of my coworkers... and clients... not my best day. At exactly 10:30 I was allowed to drink juice... hallelujah. I ran to the back room and poured myself a glass of apple juice. ahhhh...

"49 minutes till I can eat" I would exclaim to my coworkers... I wasn't counting down or anything... and I'm sure this didn't interrupt their day... not one bit.

Finally... 12:30 came.

I had been fasting for 26 hours... and had had everything cleaned out...

I grabbed a pretzel from my bag and put it in my mouth...

"wait... I can do this right" I thought as I re-read the paperwork that I had received, "yes it says I have to eat"

I shoved the pretzel in my mouth... mmm...

Then I was nauseous... and it took me another hour before I could actually eat. All that excitement to eat... and I want to toss my cookies.

Soon it was time for me to leave and my dad picked me up and we went to lunch and I got a soup made mostly out of broth.

We came home and I fell asleep till it was time to go back to the doctors. As we arrived at the doctors my mom and I were planning our great escape...
"K... keep the car running! I'll be out in a second" I told her...

yeah... I'm a horrible person.. I scheduled 2 appointments at the same time... the good thing was... the G.I. doctor was only supposed to take a second and the second doctor the urologist (... ewww I hate his office... way too many "male parts" lying around on desks) was literally across the street.

I ran in and turned in the i~~ncredible fashion statement~~ err I mean belt machine thing and then came back out to the car. I was only 6 minutes late to the urologists office and he was running late anyway. I sat in his office waiting room... that was FULL of men. I was the only female. My mom was parking the car. I felt very very out of place.

Unforgettably... he had to prescribe me some new meds for a new... fun little ~~waterfall issue~~ ...sorry TMI... but they seem to be helping... and he thinks it's some sort of nerve issue... probably related to the rest of my issues... yay...

So that night... I thought the pill had made it's way out... but with my vision issues... I couldn't see the white pill against the white toilet... So I grabbed a pair of handy dandy gloves... and yes... you are reading this correctly.. I stuck my hand in to find it. ewww.

It was there... all by itself... it came out... all alone...

Now... Why did I have to find this nasty thing... cause if I hadn't confirmed it's exit... I would have had to have additional x-rays before some of my testing next week... and frankly... I don't want to pay for additional x-rays. So... I found it. And I just might have texted this picture of it to my boss...

Yep that's my hand... and that pill went through me.. gross

(it's ok... get over your shock... she asked to see it! So I washed it off... and I sent her a picture... then I thoroughly lysol wiped it... and now it's sitting in my medical marvels collection... with five sternal wires I had removed and my wisdom teeth (stupid tooth fairy never came for them... I had to PAY to loose those... cheapo tooth fairy :) ha ha!)

The next day I went to see Dr. "Blackbird" and he ... get ready for this...

HE GAVE ME A DIAGNOSIS FOR MY EYES!!!!!!!

WOOO HOOOOOOOOOOOOOOOOOOO!

I was screaming from the mountain tops...

and best of all.... he's treating it :) It's some sort of connection issue between my brain and my eye... similar to a migraine but with no headache. I am thrilled. He said it wont fix the rest of my issues but it'll at least let me be able to see... and drive :)

So that's my update for now... more to come this week... sorry for the lack of updates this week... computer's are a little frustrating for me to try and view currently... anyway...

I hope you have a wonderful Labor day weekend! Do something amazing :)

xoxo- me

TMI (but you know you want to read on :) ha ha!)

2011-08-29T18:33:00.000-07:00

Heads up... if you are easily weird-ed out... you might not want to read this post... or if you are a guy who wants to keep that beautiful image of me in your head... don't read this...

But if you want to laugh really hard... by all means... READ ON!

So... tomorrow is my small bowel endoscopy... sounds fun right??? Well... basically I get to swallow a camera... the size of my hand (slight exaggeration...) The doctor is following my "rule" of... nothing in or out... he didn't cut his own whole though... He's just making me swallow the pill...

Last week at my appointment... he handed me a brochure... explaining the procedure... I looked at the brochure and laughed so hard... I snorted... (Confession I am a ~~recovering~~ Laugh snorter)... Yep... I laughed so hard I snorted... So... this brochure has a lady... looking happy as a clam with a "belt" holding the recorder on it walking with her purse on her shoulder in her floral skirt and pink blouse... with some HIDEOUS shoes...

"Just a FYI" I laughed as I spoke "I will NOT look that happy... especially the day after you have me... Prep..."

"Yeah... most people don't" He replied

So... Today... I picked up my "prepping bottle" It comes with the solution as a powder in the bottom... then you add the water.... all 4 liters... yeah...

So... I go to fill up the stupid bottle and Bam... It leaks all over the floor! Great!!! Why did the Pharmacy give me a leaky bottle that was partly crushed?!?! argh!!!!

My mom rushes in trying to find an appropriate bowl... I fall apart... Dad grabs the bottle and views this as a science experiment that he must figure out... and sister gets a rag for the floor (K... gotta say it now... I love my family) I'm in pieces... sobbing... imagining myself not being able to do the stupid test (I don't want to do) because I couldn't drink the solution (I didn't want to drink) that the Dr. prescribed... and not getting the answers I need so badly.

Dad, mom, and sister got it into a pitcher... and I started to drink... 8 ounces every 20 minutes.. until "it" runs clear... Yeah...

Oh and on top of all of this... I'm sure anyone who has ever been through a colonoscopy can understand... I'm starving.. been on clear fluids... and I'm hungry... and grumpy... ~~and blogging in the bathroom~~ and providing way too much info in this blog.

So tonight... I'll be hanging out with my ~~dear~~ horrible friend Jon... and My other best friend... Desitin...

And tomorrow couldn't come fast enough...

xoxo- me

Broken Hearted

2011-08-24T23:02:00.000-07:00

I can't be strong tonight. I'm aching... both physically and mentally... I'm broken hearted... My body is hurting. My leg hurts. My arm still hurts where they tried to put in the contrast on Monday. My vision is getting blurrier (it is getting very difficult to see my computer screen... good thing I can type with my eyes closed... but sorry if I miss some spelling or grammar stuff). My tremors are getting worse... I'm stressed about the future... I'm stressed about being an inconvenience... I can't drive. I'm frustrated. I feel like an inconvenience to everyone around me. My work has been wonderful... a huge blessing... and has accommodated my shorter schedule and doctors appointments. My parents have been so sweet... driving me around... but... I'm frustrated. I like to be the one who helps... not be the one who is helped.

And my heart is heavy... My heart is broken

When will this be over?

I went back to Dr. "Blackbird" today... My vision is blurrier... and I'm frustrated beyond belief. My world is dim... literally... everything I see is dim. He stole some more of my blood... and ran a bazillion more tests.

I am so frustrated.

My fever is back tonight...

Tomorrow it will be 4 months since I nearly passed out at work. I don't want to think about how I've waited this long for a diagnosis... for relief from pain... I'm discouraged...

In my "real life" (not blog life)... I try so hard not to complain... because complaining doesn't do anything...but tonight... I broke down... I cried as I told my mom how I couldn't feel my foot... my leg hurts... my vision is in the dumps... my back hurts... my stomach hurts... and I'm exhausted... and I'm starting to feel a little too much like Job.

This afternoon in Dr."Blackbird's" office... my head found it's way to my hands as I sat in the dark waiting room... I listened for my name to be called for some tests and I couldn't help it... I cried... I prayed...

"Lord... Please please... take this away... I can't do it any longer."

I said that over and over... over and over...

I need prayer... I feel like now more than ever... I can't go on like this... something has to change... something has to get better...

My heart is broken... My burden is heavy... And I'm struggling to see any light at the end of the tunnel.

Oh Lord... please make me better. Whether you choose to heal me or not... I know you will use me for your glory through this. And I will go through this Valley if you want me to.... but please... hold my heart.

xoxo- me

P.S. Today's song choice is "If you want me to" by Ginny Owens. Love this song... She is a beautiful artist and is blind... This song was my "theme song" 6 years ago... and I still love it today. You can play it on my sidebar :)

MRI results and Specialist number ???

2011-08-23T01:04:00.000-07:00

It was earlier than I like when I woke up this morning... I got dressed in my "appointment clothes" (something that's easy to take off... no jewelry.. no makeup... just comfy). My dad and I got in his PT cruiser and we drove up to my appointment... 2 blocks away from my office. He continued on to work as I walked into the tall white building. I filled out the paperwork, handed over my insurance card, and took a seat.

Finally she called my name...

" You can change in here", she said as she handed me another "paper napkin" and closed the door. "Please remove everything from the waist up.

"yeah yeah.. I got it" I thought to myself... still angry that I was at this appointment an hour before my coworkers were even starting to show up to work... "way... too... early... no coffee yet... grrr... grumble grumble!" I thought.

She led me into the MRI room where we talked about the wires that are in my chest and how they would be ok because they were titanium. She helped me lay down on the table and handed me the squishy ball to press if I needed anything. The machine started whirring around me... then all of a sudden I squeezed the ball..

"I am a dingbat... I forgot to take off my (unmentionable)!"

I was mortified... what didn't I understand about ... from the waist... UP! I blame ~~the lack of coffee~~ my exhaustion... She assured me it was ok... and if there was going to be an issue it would have already happened... and my "who ha holder" would have been plastered to the top of the machine...

Way to follow directions Rach...

They finished the first part... without contrast and then went to put the contrast in... Seven pokes later... They got a return on the stick (non medical translation... the blood started to flow out... so they could inject) She started injecting the contrast... then... something went terribly wrong... the contrast somehow infiltrated... And was pooling in my wrist next to the stick...

I cried like a baby... seriously... worst pain I have ever felt... And I've had my chest cracked open... yeah... The doctor came in and assured me the pain would decrease within 4 hours...

FOUR HOURS?!?!?!

(Well.. I can say now... it's been 14 and my wrist feels like I got the worst shot of my life... like a million times worse than a flu shot. And I'm only ~~complaining~~ whining... a little)

They tried to complete the test... but there wasn't enough contrast in my vein... and they weren't going to stab me again... (P.S. I love it when they blame it on you... like.. you are so dehydrated that it's your fault... Well newsflash... I went to a friends house last night...and was drinking so much water I went to the bathroom 7 times... Yeah... not dehydrated my veins are just awful.... and big sorry to J and M for your water bill...) We rescheduled the contrast part and my mom and I went to get breakfast.

An hour later I was off to specialist number... I can't remember... And I was waiting for her to tell me my MRI results. I had seen her 6 years ago. She remembered me... told me I was famous and that doctors are still talking about my case from 6 years ago... yeah... that's what I want to be famous for... ha ha! She did her exam... and told me my MRI looked... good. And she didn't need the contrast. I was so relieved.

But...then she started discussing my exam... my reflexes are nothing compared to what they were 6 years ago... and she apparently noticed some other things that made her want to further test...

So... bring on the paper napkins... more tests are on the way... I was so thankful that she didn't dismiss me... or my issues... but said "we are going to figure this out... because you are weird" Yeah... that's me... me and my maternal Grandpa... we are weird... if anyone is going to get something out of the ordinary... it'll be us.

xoxo- me

Off to Colorado!

2011-08-19T06:13:00.000-07:00

I woke up 5 minutes before my alarm clock... that is a rare occurrence... Today I'm hopping on a plane to the Rockies!!! I couldn't be happier... I'm going!

There have been many times I thought there was no way I would make it... but now... My bags are packed. Ticket is purchased. Reservations are made. And I am going. I am so excited to get away. Not talk to any doctors office... Not have any vampires suck my blood. Not spend any time researching... just enjoy... and of course... take it easy :) It is going to be a good trip. A fast trip but a good trip :)

Please pray that I have minimal pain, fevers, and symptoms while I'm there...

enjoy your weekend :)

xoxo- me

P.S. Today's song is "Come Fly with me" by my dear friend Frankie... You can hear it on my sidebar :) Oh I wish you all were flying with me :) How fun would that be?!?!

identity of a family member?

2011-08-18T07:00:00.000-07:00

Identity... it can have so many meanings for a person... Am I identified as a daughter? Christian? sister? friend? coworker? sick girl? patient? What's my identity?

For the family of a "sick girl" the identity can start to get lost... you are the "sick girl's" mom... dad... sister... friend... family member... And you are constantly asked about them...

"How is she? Did you get any results?" They will ask concerned.

Typically the family member will respond...happily... soliciting prayers and encouragement. But they may feel somewhat empty... thinking "what about me? Do you want to know how I am? I'm your friend too? I had a bad day... got a flat tire... I bought a dog... I lost my shoe... " (k I know lame examples... but my brain isn't working creatively at the moment... ) they will be sitting there thinking and waiting to be acknowledged for whatever is going on in their lives... good or bad... they might feel neglected... even though they know that people are just concerned. They are tired of talking constantly about their sick counterpart... And trying to change subjects and asking the questioner how their week was. Only for the questioner to change it back to the sick one.

That's part of why I have this blog... so my Parents and sister aren't constantly bombarded with questions...

Now... I know... I'm not the best one to be blogging about this... I don't have much experience in this department... but my family does. So next time you see them... can you give them a hug for me? And ask them how their day went? Maybe invite them to coffee?

oh and for the record... I have only been told this by a member of my family once... and by no means... do I want you to ever feel guilty for inquiring :) I appreciate all the prayers I can get... and so does my family :)

So....It would make them feel really nice (and me too!) if you could talk to them (and me!) about something exciting in your life... We love to celebrate with other people :) and we are all feeling a bit overwhelmed at this time... and sometimes... we don't feel like talking anymore about sick stuff... xoxo :)

xoxo-me

Dr. "Blackbird"

2011-08-17T20:06:00.000-07:00

We got lost on our way to see Dr. "Blackbird" today. I ended up calling and asking for help... His office is at one of our local colleges and the campus can be quite confusing. We drove up and down the streets... hoping to find the correct building number... My heart raced as we got closer and closer to the appointment time... we can't miss this... it is so important. The GPS my dad bought me for Christmas (side story... I get lost... all the time... and if it weren't for that GPS I would probably be driving in Alaska right now with no idea that I had left California) was pointing at a building that didn't have the correct number.

My wonderful dear friend Ali is getting married this weekend... In Colorado. Yesterday at my appointment... I was told I might not be allowed to fly... You have got to be kidding me right???

"I've known her since I was 6 months old... we have spent countless nights up till 5 in the morning giggling and sharing secrets... all four friends... I can't miss her wedding. She found the Man of her dreams! And my other friend just got engaged!!!! I need to be there" I pleaded my case to the doctor.

"Wait to see what tomorrow's specialist says" he said with a lump in his throat...

I couldn't stop thinking... I should have just dealt with this stupid new symptom... who needs to see anyway?? I'll be fine... I'm going to Colorado... whether you like it or not... so there!

Finally, we found the right building and the correct office... They won for shortest stack of paperwork ever... yeah... 1 page!!! woot! Maybe cause I had been to that college for medical testing back in '05? They took me back to a room and tested my eyes... "

what's this letter?"

"ummm... a diagonal line?"

Then they took me up to 2 giant... machines... where they looked at my nerves, retina and whatever else is in my eye... one test I got so bored I thought I would fall asleep... it took forever... looking in this giant cone... for 10 minutes. yeah... my eyes just about closed...

We went back downstairs... I took the elevator... we walked down the cold stark hallway... and into Dr. "Blackbird's" office. There he stood in his white coat...

"well let's have a look." he said with an almost determined-to-find-something approach.

"This test is normal... everything looks good. and this one is... well there is nothing that strikes me as awful...hmm"

yeah... not really the resounding affirmative-you-will-be-fine to go to the wedding I was looking for. There is nothing that strikes me as awful??? That's a bad way of putting it... so... something's not right? I pried.. I begged...I pleaded for an inkling of what he saw... and all he said was... "you need an MRI... and I'll see you next week." Great...

Then the big question...

"can I go to the wedding?" I asked in a meek as a mouse voice... trying not to anger a lion.

"Yes... You will be fine to fly... but just take it easy." he said in the kindest voice I have ever heard.

So... MRI is scheduled for Monday... which my boss conveniently already had encouraged me to take off... yay! So... I hope he sees what he is looking for... and can figure out why I can't read... and no... I don't have a literacy issue :) ha ha!

So overall today was productive... I just wish... I wish so badly that I had an answer.

xoxo- me

P.S. I have way too much fun picking out songs for my blog... no... I don't get paid or anything crazy like that if you listen :) but... I picked out one for today... thought it was kinda ironic since I can't see very well right now... but I hope you enjoy it :) oh... maybe I should list the song titles... cause I add one everyday... today is "I'll be seeing you" by another one of my fav's ... Billie Holiday... mmm her voice... love it :) you can play it on the sidebar <3

bye bye blackbird

2011-08-17T06:29:00.000-07:00

This morning I woke up reeling from yesterday's events... not gonna lie... yesterday was horrible.

Currently, the birds are chirping outside my window... and the hummingbirds are making their morning visit to my window box... and I only got six hours of sleep... but there is no way I will fall back asleep now that I'm awake... not today. There is so much on my mind. So many questions.

Why me?

Why now?

Last night as I was getting ready for bed and I couldn't stop thinking about how God wont give me more than I can handle... I thought... Why then did he make me so strong??? I don't really want to handle anything else!!! I became frustrated... and couldn't stop asking the question...Why me?

I know that I am blessed... and I know there are many people in worse off situations. But I'm tired... I'm 24 and I've been dealing with one medical thing after another since I was 14. I don't know how much more I can take. But He does... and I need to rest in that. Rest in the fact that He knows the whole story.

So... yesterday during an "emergency appointment" I was told by my doctor that I'm no longer allowed to drive. I'm devastated... It's probably not forever... but for now... this isn't the first time in this process that I've been banned... but again... I've lost that freedom. It's amazing how much that simple act of driving means to me. Being able to run to the store to quickly up a gallon of milk. Or driving down to the beach to watch the sunset. Now... I have to be driven. And I have to be driven to work... this is the hardest for me... but I'll make it... and hopefully... it's not forever.

Off to a new specialist today. Please pray for some answers... and for him to be knowledgeable.

Funniest part... the doctor I was referred to yesterday... His last name is that of a blackbird... and all I could think of was that song bye bye blackbird... particularly the version that plays in Sleepless in Seattle... And how much I would like to say bye bye to my blackbird of this illness... So... I put it on my sidebar... and then a version by my fav... Dean Martin which is a little bit more jazzy and fun... and I need fun right now... So... the first is from Sleepless and the second is from my love... Dean :)

Enjoy :) and dance in your kitchen while you listen to Mr. Martin for me :)

xoxo- me

keep your head up :)

2011-08-14T23:23:00.000-07:00

I was sitting in my tall blue chair at work when I first heard this song... "only rainbows after rain, the sun will always come again" It's a catchy tune... not something I would normally listen to... but I fell in love with this song.

maybe because it's telling me to keep my head up? Stay positive...

Staying positive is so difficult... although apparently I'm doing a pretty good job at fooling most people. I look "normal" only slightly puffy... and I've learned to "control" the tremors by clasping my hands in public... so I think that I've fooled many into thinking I'm feeling fine... when really... I just want to crawl into a ball on the ground and sulk.

Just putting on a happy face helps... and hopefully... it will help me to remember that the sun will come again. God promises that he will take care of me... I'm worth more than the sparrows... I just want to show his love to those around me... family, friends, neighbors... show them how He is taking care of me. I trust Him. And he will bring me a rainbow.

"I can do all things through Him who strengthens me."

All things... even this... this horrible year... I will get past it... and he will strengthen me.

xoxo-me

P.S. want to know what song I'm talking about? it's on my sidebar :)

learning to cope...

2011-08-13T21:39:00.000-07:00

"It'll fit" I tried to persuade my sister as we looked at 2 giant bookshelves in the middle of Costco...

"there is no way that ONE is fitting in mom's car... let alone TWO!!! You are crazy!"

She came at me with that look... any younger sisters out there??? I'm sure you know the look I'm talking about... the... you are so frustrating sometimes ...you don't know anything look.

I told her that I would go find a handsome young man to help us put these five million pound bookshelves in our flatbed cart. We went to check out, paid for the items, and left the store. As we walked out into the cool evening air I started to worry about how these bookshelves would fit in the car... and as we got closer I quickly realized...

My eyes were bigger than the car...

I found a helpful young gentleman named Hunt who tried to help us shove them into the car...

" you can leave them here and come back tomorrow with a truck if you would like" He told me

I'm sure at this point he was laughing so hard inside... at this girl... who thought she could get 2 boxes... 6 feet by 3 feet into the back of her mom's volkswagon CC that she had borrowed. I assured him that I wouldn't need to come back... I'd call my dad to rescue me. And thanked him for helping me... P.S. Hunt... I'm writing a note to Costco to thank you... Yes I also work in a job where it is nice to have people appreciate what you do and the extra steps you take. So I love to help other people get recognized... because it's nice when people notice :)

A lady walked by and asked if she could help us take them home in her big truck... So sweet... I explained that my dad would be here soon but that I was grateful for her offer... It's people like that who make you smile :) thank you stranger lady :)

"Daddy?" I said in my most spoiled rotten...slightly whiny... I-have-daddy-wrapped-around-my-finger- voice. "My bookshelves are too big... could you please come help me?"

Of course he came... he laughed at me for not listening to him... or my sis... (yes he called Naomi while we were in Costco and told her he didn't think they would fit) He was there in 10 minutes, with his larger car, and we loaded both boxes into his P.T. cruiser. I thanked both my sister and dad profusely... and I now owe both of them a pedicure... although... I don't think dad is going to take me up on my offer :)

So last night... piece by piece... I carried my priceless fabric storing bookshelves (with BINS!!!) into my room to assemble... I needed to do it.. I needed to prove to myself that I could physically do it. My sore body moved slowly as I walked up and down the stairs 16 times with all the pieces. One by one. Then I sat on my floor, and slowly, I put the shelves together... shaking as I started screwing in the screws... man those trembles make everything so much harder... like... putting in the pegs and using the cam locks... I finished the first one last night... and got to the point of exhaustion where I couldn't do the second... it was time for bed.

This morning I arose bright and.... late at 11 am and started on the second... they are now both constructed... and I'm happy to report... I am no longer storing any of my fabric outside in my backyard in bins covered with a tarp... yes... as I told you before... I'm a fabric hoarder : ( All of the fabric is also now out of my mom's dining room... hoarder confessions... and out of all the boxes... It is in my shelves... that I put together... and thanks to my sister and my dad... the shelves that didn't get left in the costco parking lot :) ha ha!

I can't say that I'm organized yet... moving stinks... and I moved a whole sewing room and a bedroom into one... count that... one 10 by 10 room... with almost an entire kitchen worth of stuff too... note to young people... hope chests tend to take over... watch out!!! Oh... and that doesn't count my shoes... Yeah.. one of the young men who helped us move... His name is Jordan and he's a 19 year old who couldn't imagine what a girl would need so many shoes for... he was about ready to throw my 3 LARGE boxes of shoes out the window... ha ha! do I have too many?? maybe... but heels are so fun!!! ahh someday I'll wear them again when I have my balance back :)

But what I'm most proud of is that I overcame my trembles and figured out how to cope... It's all about learning how to do simple tasks.

xoxo- me

Hello Russia

2011-08-12T00:37:00.000-07:00

My blog has a tracking device on it (as do most blogs) It's really kind of fun to watch. I can see how many people visit each day... where they are from and how long they stay. It isn't too creepy... it just tells me what city people are in. I love watching and seeing friends from all over the world check in... It helps me to feel loved :) I see my Romanian friends... and my grandparents in San Diego and Washington... Some friends from Florida, some from Pennsylvania, some from New York, and Boston, and all around Southern California... and then some of you are "unknown" maybe you block the ability for websites to track it? But there are some... that I just don't know how they found my blog... Like Russia... I don't know anyone in Russia.

But... Apparently my blog has become very popular in Russia... I had 102 different visits from Russia today... Not sure how that happened... but I figured I should greet all of you. So... Hello Russians :) I'm glad you are reading my blog :) even though I don't know who you are :)

anyway... on to an update...

Today was a rough day... let's just say that having a summer cold, and being a girl at the same time, while you are sick with an unknown illness doesn't leave you feeling all that great... so... I'm sorry to my family for my emotional outbursts... I'll try harder tomorrow... Love you all :) So...Please continue to pray for healing for me... I would like healing above anything right now... just to have one pain free fever free day. I would love just one.

anyway.. wow this is getting to be a really random blog post...

Tonight... Kitty and I were trying to fall asleep ... and we heard another kitty die... outside our window... Why do people let their cats roam late at night when we live in hills with coyotes? it just makes me so sad... this is the second cat we have heard die ... in less than a week... so sad... So... now I can't sleep... I just keep watching my kitty all snuggled in ~~her~~ my bed... and I'm so glad that she is mine... and I get to take care of her... and make sure she doesn't get eaten. But now... I can't sleep... that noise is terrible... and I just cant get it out of my head...

yep.. that's a moving box behind her... still not unpacked :) and yes... its a webcam photo can't find my camera yet...

I better stop there for now... before I change subjects again :) sorry for zipping around from subject to subject :)

xoxo-me

SHIRTS

2011-08-11T00:59:00.000-07:00

In third grade I had a favorite shirt. actually... funny now that I think of it... I had a favorite shirt every year... In my family we only went clothes shopping once a year... right before school. My mom would give us a budget (normally about $100 and we were expected to get the most out of it... It was a fun game... we hit the clearance racks at target and mervyns and old navy... I remember one year being so proud of myself for bringing home 22 items with my 100 dollars... I would brag to my dad about how I got a shirt for $1.22 (who am I kidding... I still do). We also got tons of clothes for birthdays and holidays... normally matching... thanks mom for making Naomi and I look like jailbirds when I was in second grade... with itchy black and white striped shirts and black pants... that was the one outfit that took the cake in my book. wow... sorry for the tangent... anyway... My favorite shirt in third grade was pink... it had a bear on it with a tag that read "hug me". I wore it all the time (that is until some boy teased me and kept trying to hug me)...

So... this afternoon as I drove home I couldn't have felt more alone. I felt as though I was completely and totally alone... I needed a hug... I needed someone to listen... not suggest... not talk... just listen. Don't get me wrong... I have had masses of people supporting me... and I am so grateful for all of you...

But today... I wanted to cry... I wanted someone to hold me... to hold my heart. I drove up the 73 toll road and over the brown grassy hill and cried... Then this song came on the radio... you can press play on my sidebar and hear it...

I felt so alone... but this song reminded me that I am treasured. I am His.

I hadn't had the opportunity to talk to anyone in my family about what the doctor said... well not really talk to them... I told them what he said... but not how I was feeling... this is why I felt so alone. I tried so hard to let it go... but the fact of the matter is... no matter what it is that is making me sick... I'm still sick... it doesn't matter what the name is... it is affecting me. I am sick... and it's not getting better.

When I got home from work my mom and sis were talking about something important and I just went to my room... and continued crying... I was really hoping to talk to one of them about what was on my mind... but I needed to wait. (yes... to all of you who are about to send me an email. I do know the world doesn't revolve around me... I did not interrupt them... they had no clue I was even upset... And I wasn't expecting them to stop everything and talk to me. I just needed to cry... they finished their conversation and then 30 minutes later came to ask me to move my car... anyway... I do know the world doesn't revolve around me... quite contrary to what some people may think that "I think" ... so ... please don't accuse me of it... k? thanks :) P.S. sorry for the defensive... I'm just kinda tired of being accused of it.)

Then... My sis left and eventually... I told my mom about my worries... she listened... and hugged me. And for just a small moment... she made it all better. I explained how I felt so alone... How I don't have that one person in my life who cares to listen to everything... she has my dad... Naomi has Matt... grandma has grandpa... uncle has aunt... I have... a cat? I don't have that relationship... and it's times like these that I long for one... I long for someone to grab my hand and tell me it will be ok. I want them to come up and pat my shoulder... and... I want a confidant.

I have Him though... and He is better than any earthly man...

anyway... I think that is enough looking into my heart for tonight...

xoxo-me

oh and p.s. I got all the hugs I needed... no need to find me and trample me down tomorrow... I promise... I'll let you know if I need one... I'll be wearing a pink shirt with a brown bear on it with a tag that reads "hug me" :)

Results on biopsies...

2011-08-10T09:58:00.000-07:00

This morning I sat in my bed and watched the humming birds come and take a drink from the flowers growing in my window box. They are so peaceful.... Quickly fluttering between flowers.

When I was 17 (yep... 17 and sick with my first disease) before I had my open chest surgery I had another humming bird friend. There was a pink floral tree that grew outside my window and on the one branch that was so close to my window... my friend made her soft nest. Daily I would sit next to that window, while the cool breeze blew in, and watch for her eggs to hatch. She would let me sit there and watch... for hours. Then one day... the tiniest little birds came hatching out... they were so small they almost looked like bugs. I watched them grow and eventually fly away... but daily I was amazed at their growth and strength. How could something that small survive... and fly so fast?

Yesterday I got my results on my biopsies... everything was "normal". There was some swelling... but no diagnosis. The doctor and I talked on the phone for 25 minutes... We talked about my current situation and what we could do next. He will have me swallow the camera pill... but he's also nervous about another disease... and he has decided to send me to specialist number 10... I think it is ten... I've started to loose count... Funny thing... I saw her 7 years ago... and she helped with my diagnosis back then... So I am grateful that it is her... and even though I hated (I know... hate is a really strong word) her when I first met her (we didn't have the best first meeting... some things were said by her... and I accused of crying too easily... but later she apologized for being so harsh... after she read through my case.... and understood all I had been through... after all.. I was 17 and in a wheelchair.) But I'm so grateful that it is her... that she can help again.

Anyway... My Doctor told me he really didn't want to tell me why he thought I needed to see her... but he did. He is always honest with me, and he knows that if I know, I can plan... I can start to deal... with the idea of it... I can be prepared for the possibility...it makes it easier...

I cried for an hour after he told me... I know it is a strong possibility... but then... I let it go.

And honestly... I'm not ready to even worry about this illness... or share it with anyone... but if this is it... my life will never be the same... so... I need to be strong... I need to quickly flutter past my worries.... I need to fly to God's word... I need to stop and enjoy these flowers.

xoxo-me

meltdown

2011-08-07T22:40:00.000-07:00

tonight... I had a melt down... tears streaming down my bright red cheeks, eyes puffed, and sobbing with words that were mumbled coming out of my mouth (ugh I hate to admit that I melted down... but I know you can probably relate... maybe? or maybe I'm just too emotional?).

"I'm not where I want to be!" I sobbed

"Why can't the doctor find this stupid bleeding, swelling and fevers and make it stop?"

"I am so frustrated... I want to be living on my own... I didn't want to be moving with you!" I told my mom

" The stock market went down a bunch last week... and I lost a ton of money" I cried when I thought about buying my house...

What caused this melt down? Well as you know we moved... and I have way too much fabric... and way too many dishes (for my new house... when I finally move out... I've been slowly buying stuff for my "hope chest" since I was thirteen)... In this new house I decided to refuse to store anything under my bed... because of allergies and if it's "hard" to get to, to clean... I wont.... also my elderly cat has a hard time jumping up on my bed if I have the risers on it to make it taller to store stuff... When seeing how much I had left... My dad suggested I store stuff under there... and I tried to explain again... why I didn't want to.

This whole thing started when I brought my mom in to my room to ask if she thought a shelving unit we saw would look ok in a certain spot. She agreed that it would. But then somehow... it all fell apart... I ended up in tears... pouring out my frustrations...

A combination of my favorite painting from my great grandma falling off the wall (stupid expensive hook thingy I bought didn't work) and the frame breaking (totally fixable... but I was super bummed), a lack of sleep (have you ever moved a cat? yeah... it's not going quite as well as I'd hoped... she woke me up to comfort her 5 times last night.), and pain, and having to take multiple trips to the restroom in the middle of the night to "be sick", and fevers... led to an emotional break down tonight... I'm certainly not proud of my puddle of sorrow I created for 10 minutes... but in a way... I think it helped... Sometimes just crying out all of your frustrations can make a person feel better...

Hopefully... tomorrow should be better... I am going to go look at some shelving... and hopefully I will be able to post pictures of my finished room soon... it is looking rather cute... but... I still have too much to organize.

hopefully we (the cat and I) will both sleep well tonight... and this week I find out the biopsy results :)

Oh please Lord... let them have an answer.
xoxo- me

packing... moving... I'm a (fabric) hoarder...

2011-08-04T23:35:00.000-07:00

So... we are moving in two days... We've had possession of both houses for a couple weeks and have been slowly bringing hanging clothes, musical instruments (did I ever tell you I play the viola? I hadn't played for a few years after my first surgery on my chest. But... I just picked it up a few days ago... and finally the vibrating of my sternal wires have stopped when I play! woot woot! guess it's time to pick it back up... and maybe find an orchestra to play in) , my sewing machine and other bulky-not-so-easily pack-able stuff... well this has left the rest of the pack-able stuff... laying around.

As you know... I don't have much energy... and with my 4 hours at work.. I'm toast... Well, tonight I had to pack. My room looked like a tornado the size of Texas had blown through it picking up and tossing the most precious of my worldly possessions... I found lost earrings and bracelets flung together with candles... all waiting to be organized and packed... Let me make something clear... that organization didn't happen.

One of my boxes is labeled SURPRISE!!!! Yeah... I just threw a bunch of stuff in the box... t-shirts, scissors, fabric, ribbons, x-rays, cat scan films... and I wondered... HOW did I get this much JUNK!!! I pulled "the box" out from under the bed... you know "the box" your mom makes you to keep all of your "student of the month" "Fast reader" "participation award" and school work in? Mine is huge... My sweet mom kept nearly everything. It's a box of accolades. I re-packed it... for the 7th time in my life... and realized that the only time I ever look at it is when I'm repacking it... for a move... but for some reason... I keep it. It helps me to remember things I would easily forget... Like how much I loved my 1st and 2nd grade teachers. (actually funny story... I ran into one of them at my bank... and was shocked and so happy... and we became f.b. friends... and the other found me on fb and told me I was one of their favorite students of all time).

I used to have a wonderful sewing room in the sun room... My wonderful sister surprised me and packed it for me while I was at work today... I couldn't be happier.... My sister is an angel... It was a disaster... I really need to donate a lot of it... and I will once I move... and un-pack... But tonight... Naomi and I escaped to get toilet paper ( being sick... and no t.p. doesn't work) and we picked up the small "dollar ben & jerrys ice cream". When the sis and I got back in the car I confessed to her that I don't think this is all going to fit in my new room... We cracked up...

"oh no... it's not going to fit" I said...

"the movers (from our church) are going to think I'm a hoarder!" I laughed...

So... finally... it's packed... and I'll probably be spending the first night... sleeping in the hallway... cause my room will be too full with a box of accolades... and 14 TUBS of sewing stuff... oh and the kicker... I didn't think I had that much... I was sure I would be able to fit it all into one... count that one... 5 drawer dresser...

xoxo- me

resting

2011-08-03T18:25:00.000-07:00

I can remember sitting in a really uncomfortable orange chair in driver's ed class while watching a movie describing the dangers of driving while tired. There was a lady in some 80's parachute pants pretending to be exhausted (let's just say her acting was sub par) and she pulled over to the side of the road to rest. In the movie it suggested that if you ever feel like you are going to fall asleep that you pull over. Makes sense doesn't it?

My commute to work is 40 minutes each way. I've been having trouble staying awake during the day... at work... at home... in the car... and... I can't get the image of the lady in her parachute pants out of my mind. Today as I left work my boss (who is a very caring mother herself) told me to stay awake.

"your eyelids are at half mast" she said.

I got in my car (Wendy)... cranked the radio... rolled down my windows and sang as loud as possible. The four hours a day and hour and 20 minutes driving are really wearing me out. I come home exhausted... and I understand why the doctor only let me go back part time (finally... took me a week... but I get it now... and I'm questioning my sanity.) About half way home... I had to stop, just like the parachute pant lady, to take a rest. I grabbed a diet coke and rested. I just need to take some advice on resting from parachute pant lady. Rest is important.

Now... if I could only have the style that she did... I would be set :) Ha ha!

xoxo- me

P.S. still waiting on results... I've had fevers for 3 days in a row.. please pray they will go away :)

Here comes trouble

2011-08-01T17:50:00.000-07:00

So... the endoscopy went well... my anesthesiologist was great and I didn't pull anything off :) I woke up to the sound of my nurses voice "Rachel... PLEASE PUT YOUR HANDS DOWN!!!" then a few minutes later "RACHEL PUT YOUR HANDS DOWN" then a bit later... "RACHEL!!! Am I going to have to strap your hands down?"

It would suffice to say that I got in a bit of trouble in "recovery". I'm a hands above head sleeper... My hands are nearly always out of my sheets and above my head. For as long as I can remember,at any baby shower, my mom has been telling stories about my sister and I and how different we were... "Naomi loved to be swaddled, we couldn't wrap her tight enough", she would say with pride... and then... with a bit of laughter " But, Our Rachel... She was as wild in the womb as she was in her crib... No swaddling for her... hands above the head and sprawled out." Let's just say... I was always the "difficult one". Every mom has one right?

Well... today, my nurses were wishing I wasn't so willful... because each time I put my hands over my head... the alarm would sound... and send an alert that something was disconnected, I was dead, or it was not reading correctly.

My doctor came in (and this time I kept from professing my love to him) and he said there was nothing... I cried... He then encouraged me that he took a TON of biopsies... and if this doesn't show anything I'll just swallow the camera pill and that will hopefully show whatever it is.

Now I sit... uncomfortable... and hungry (we are moving... and people are busy... I ate some soup... and toast... but I feel like I could eat a whole cow!)... with a tummy full of air... waiting for this nasty (anesthesia) headache to go away. And prayerful that the biopsies will have some sort of answer...

oh and one more thing... my mom warned me about blogging while still being under the influence of "drugs"... so... sorry if this made no sense :)

xoxo- me

anesthesia woes...

2011-08-01T00:20:00.000-07:00

Today... I go in for my endoscopy. As I've said before I'm not thrilled... I'm not thrilled about what they "think" it might be... or missing my 4 "allowed" hours of work for Monday... But mostly, I'm not thrilled about the anesthesia. So... I thought this morning... I would write about "funny" things... to take my mind off... the icky things...

Here is my list of reasons for not being thrilled about anesthesia... and yes... this is supposed to make you laugh!

1. Every single time I go in for a procedure and they have to put an I.V. in me (and of course I've had to fast and been allowed no water since midnight) it takes at least an hour to find one of my TINY veins. Why? my guess is that when God Created me he thought my body would look prettiest ... If I had no visible veins to take away from my fair skin... he had beauty in mind.

2. The first time I had anesthesia back in 2005 for my "open chest surgery" they rolled me into the room and the anesthesiologist told me to breathe in... I pulled the mask off... Why? Because I was afraid that I was loosing control and I wouldn't be able to stay awake... This has been a problem ever since... Last time... for my Colonoscopy I did the same thing... Yeah... apparently it doesn't make the Dr. too happy... But really I just want to talk a little bit longer... I have so many words to get out each day... being out for 2 plus hours really doesn't help.

3. I wake up groggy... confused... wondering if they even did anything... and most of all... I wake up COLD! Freezing COLD! I beg for more blankets... and a heater. I'm ALWAYS COLD (fan wars... need I say more?)

4. I tend to tell people things I normally wouldn't... Like... after my colonoscopy... I told my G.I. doctor I was in love with him... yeah... This is the same doctor I'm seeing again today... great... I'll try and keep my mouth shut. Although he said that was the first time after a colonoscopy that anyone had ever professed their love for him... I'm normally pretty reserved in that area... just as hate is a strong word... so is love.

5. Finally... My family always says they are going to record me... and post it on facebook... they haven't yet... but some "Rachel-isms" still live on today from previous anesthesia... "THERE'S a GOOSE and a SAUSAGE INSIDE OF ME!!!" "I LOVE YOU SOOOO MUCH DOCTOR" "EVERYBODY QUIET!!! I HEAR SOMETHING INSIDE ME!!!" "I Have REALLY bad toots" yes... most of these are yelled... so everyone... everyone can hear...

I hope that brought you some laughter... and I might... just might allow my mom in with a camera... but probably not :)

Please continue to pray for a diagnosis.

love to you all! xoxo
Rachel

crickets

2011-07-30T23:53:00.000-07:00

At night... my favorite thing to do is sit... and listen to crickets... chirp chirp chirp... They serenade as if they were the main event at Carnegie Hall. Tonight, as I sit... waiting for a fever to pass (sorry mom... didn't tell you... 100.2 this evening) and hoping that the Tylenol will kick in soon... they are my only friends. Just me my fever and the crickets as my cat is already tucked into bed.

Earlier in the day I was caught by one of my family members talking to my flowers... "doesn't everybody?" I asked. "only special people like you" they said with laughter. If only they knew about my conversation with the cricket outside my front door this evening... call me crazy... but I can tell a cricket anything. Just like flowers. Things that I dare not share with anyone (except for God)... fears... joy... sadness... hopes and dreams... sometimes it just helps to say them out loud... even if it is to a cricket.

so... go on...talk to your flowers... or crickets... just don't blame me if people think that you too are just a wee bit crazy :)

xoxo- me

sparrows

2011-07-30T04:55:00.000-07:00

I could hear the ringing through my sleep. The noise seemed to be getting closer and closer to my head.

"Rachel! Wake up! It's your disability guy" My mom said.

Quickly, I opened my eyes, sat up and said "Hello, this is Rachel" I've been waiting for his call for 2 weeks. I work for a New York based company and being out of work is slightly different than it would be if it was a local company. I have to go through a private company to "prove that I'm sick". They had only approved me through the end of May (I have had Job security through the family medical leave act but... that only lasts so long) ... And ever since then we (my doctors and I) have been trying to prove to the insurance company that I was still sick. So I've been keeping fever charts and symptom descriptions and I write down every time I go get tests or bloodwork or have an appointment.

I've been calling them at least three times a week to check on my claim... What's the problem? You might ask... I still... after 3 long months have no diagnosis. This doesn't sit well with a company that is paying you to be out of work. So it seems that it's their job to prove that... you should be back to work. I can honestly say that this has caused me a great deal of stress. I could not get the idea that that someone was accusing me of faking it out of my head.

"Honestly... I'm sick" I would tell my mom. "WHO in their right mind would want to go through this?!?!" I would question angrily. "Ugh... being at work is less stressful! At least there I don't feel like my integrity is being questioned!" I would huff. "I would love to meet them and have them watch me tremble... or break into a sweat... or sit down cause I was running a fever." I would yell.

Yet, I understand that they are just doing their jobs, and sadly, there are way too many people who have abused the system and made it so difficult for the rest of us who are actually ill... even though our sickness may be lacking a diagnosis.

I rested the phone against my ear and pressed the soft button to turn the volume up. And I heard those words I've been waiting to hear... You've been approved.

Oh Thank You Lord! Finally! After 2 long months of no approval... I'm approved. He asked if the information he had was correct and if I had actually returned to work. I explained that I was only back part time... and still searching for a diagnosis... It's not easy but I'm trying. He apologized and wished me the best and quick healing. He understood... He tried with all his might to comfort me through the phone.

Soon thereafter... I was dancing around my kitchen... I stopped to watch the sparrows dive down into my garden to pick up the bugs on the ground. Finally... What a relief... no more trying to prove that I'm sick to people. Finally the stress of thinking that people were calling me a liar was gone. I was approved.

Yesterday was the hardest day at work physically. The pain was so evident in my back and stomach and my body was throbbing. At one point I'm sure my temperature raised... as I started "glistening" quite profusely. Work wise... it was great... I'm nearly finished with the training on our new system that took everyone 5 weeks to finish (I'm apparently a fast worker and reader... ha ha! Or... since I already can see the system... it's a million times easier :) ). I got home and my eyes couldn't close fast enough... While watching my toes as they peeked through the bubbles at the end of the tub, I remembered, how thankful I am that I had this insurance... as much of a pain as it was to deal with... so many people don't have any... and I am blessed. I am so thankful... and I'm thankful for them trying to keep people honest...

Monday is my endoscopy... I can't say I'm thrilled... I woke up this morning at 4 am worrying... worrying about the results... and worrying about a looming diagnosis... I need to remember Matthew 6:34...actually the whole chapter is great... That verse says, Matthew 6:34 says:

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble."

Just as He takes care of the sparrow... He will take care of me.

xoxo- me

I didn't expect it to be so hard

2011-07-29T00:21:00.000-07:00

I hoisted myself into my big tall blue chair this afternoon at work and rested my feet on the shelf below my desk... I had just finished helping a client who seemed to have never ending questions and I thought to myself... I didn't expect it to be so hard.... It of course being ... Returning to work. It's hard. I have to remind myself that at work "I'm normal" I can't grab my side when it hurts or lay down when I feel weak... I need to pretend to be ok.

As I slipped my shoes off and rested my feet again on the shelf I wanted to put my head on my desk. (P.S. to all of my bosses and co-workers you didn't just read that sentence... I always have my shoes on... and I never sit cross-legged under my flowing dresses... yeah... what can I say... my legs are short and I'm uncomfortable just leaving them dangling... I'm only 5 foot 2 and 3/4's of an inch just keep that in mind ;) ha ha! ) I wanted to curl into a ball and sleep. But... I was at work. I was happy to be there... I was just simply exhausted.

My motto has become "fake it till you make it" So... I have been... I've at least tried. But unforgettably... some of my symptoms are a little too visible and people notice. If only I could make it go away...

Life would be so easy.

I need to remind myself that I am blessed. Even in this... even though it is 100 times harder than expected...

I am blessed

xoxo- me

news...

2011-07-28T00:54:00.000-07:00

So... I wanted to tell you last week... but... I got scared. I have some news. I was scared that if I told you... somehow it wouldn't happen... something would get messed up... and then I would have to explain it again... so I waited.

Last Thursday I went to see my general doctor. I hadn't had a fever in 2 weeks. And I had three questions.

1. I have a spot on my arm... What is it?

His answer shocked me.
"Rachel... this could be the answer to your illness" he said.
"YOU ARE KIDDING ME!"

But then I thought back to all the other times doctors have told me similar things. And I moved onto the second question...

2. (I am so not telling you this question... It's gross... and you don't want to hear it.)

His answer saddened me.
"You are going to have to go back to the G.I. doctor. Make sure you show him that spot on your arm."

Really... I have to go back to the man who has um... done my colonoscopy... I made a rule... remember? No more going up or down or in anywhere in my body... You must cut your own hole. So... I really don't want to see him again... Really Really... you aren't going back there!!! CUT YOUR OWN HOLE!!! ha ha!

3. Can I go back to work?

Yep... you read that right... I asked him if I could return to work. For me... It wasn't so much about work but getting back to life. I hadn't had a fever in two weeks... I've been getting stronger... slowly... but stronger. And I've been sleeping less. I have felt a need for normalcy... and I want so badly to feel... good... and maybe if I ignore it the sickness will go away?

His answer...
"Well... I'm not comfortable with full time... We can try part time... but I'm signing you out for part time for at least a month until we can re-evaluate. But you have to go see the G.I. Dr. But, if it doesn't work you will need to stop again."

Great... My heart sung. I gazed out the window and imagined my freedom. The fun I would have. And the realization that I will actually make less going to work part time then I do on disability. No... it's not a financial decision for me... It's a freedom decision. I was thrilled.

We got in the car and I could barely hold my excitement in! My phone was slipping out of my hand as I tried to dial my work. My poor boss nearly got her ear screamed off as I went into "supersonic high-pitch tone"

"I'M COMING BACK!!!!!!"

We made the plans. I would return Wednesday. I had an appointment with the G.I. Doctor on Tuesday and I needed to get some more labs drawn for the Infectious disease doctor. But Wednesday... oh sweet Wednesday... I would return to work.

Saturday My parents were visiting with some friends and I sat on the couch at home... all of a sudden I realized that I was sweating... Shoot. I'm going to work on Wednesday. I took my temperature.

Fever... again.

I'm not calling my doctor... I thought to myself. I'm not telling. I'm going to work.

Sunday I couldn't get out of bed. I was exhausted. By that afternoon things were starting to look better. No more fever and I was ok

Tuesday finally came. Stepping down that same hallway, where I shed my tears about the possible return of Castleman's, wasn't easy... My heart felt so grateful that I was ok... It wasn't castlemans. But I was still in the same position. Lots of pain. Fevers. Trembles. Weak. Tired. But this time... this time I was going back to work. I had something to look forward to tomorrow. A sense of normalcy.

The white paper crinkled under my behind as he poked and pushed on my tender tummy. I showed him my "spot"

"How long have you had this?"

"about 2 months... It looks like a scratch or a scab... I wasn't worried about it until it wouldn't go away"

"Do you have anymore?" he asked

We looked over me trying to find more... I didn't find any until that night... on my upper thigh.

We talked about stocks and houses and I might have mentioned my window box a few times as he examined me. (ok... I have to butt into the story for just a minute... Do you ever feel self contentious when you are being examined??? Let me tell you... it's the worst!!! It is completely unnatural for me to just let a man stick his hand under my clothing to press on my tummy... I hate it. They are all so good at "distracting" me but I can't help but feel like slapping them away... I know they are there to help but... it's still awkward.) I was more tender than he thought I should be.

Then... he said it... he's going to have to stick something down... He's breaking my rule. Worst part... It's going to have to be next Monday. Right after I go back to work. And no... I can't just leave work early... I have to miss the whole day for a stupid endoscopy :(

Am I ready to face the disease he is checking for? Absolutely not. I'm not ready for him to stick a giant camera down my throat. And I'm not ready for that diagnosis... It's not pleasant... I'd really prefer to have the parasite that the infectious disease doctor is checking for.

So... I'm happy to report that today I made it to work. I worked for 4 hours. It was a blessing. But boy was it hard. Being gone for 3 months really takes a toll on your inbox! I arrived at work and there were flowers and balloons welcoming me back. I felt so loved. and so thankful.

The day went well.. the hardest part was when I noticed how bad my shaking affected my work.

"I'll figure it out... I need to learn how to deal with it." I told my boss (who had also noticed it)

That was the hardest part... I'm not returning well... but I am returning. And I can deal with the pain for 4 hours just to have some social interaction and some pride in what I do. My clients were happy to see me too and I was grateful to not be asked too many questions.

Tonight... I crashed... I was absolutely exhausted... But... I survived. and I'll be back tomorrow... Just not on Monday :(

xoxo- me

Fan Wars... I learned my lesson

2011-07-24T07:21:00.000-07:00

My sister and I have been fortunate enough to be roommates for the past 5 years. My parents have been kind enough to let us live with them until we have saved up enough to move out for good (they don't want us moving out ,and coming back, and moving out, and coming back) For the most part my sister and I get along beautifully... We stay up late giggling and chatting and sharing secrets. We are sometimes so brutally honest with each other that if we are watched, people would say we were fighting... but mostly we aren't... we just have an interesting way of communicating.

Well... a couple of nights ago... we had a fight... normally I wouldn't "air our dirty laundry to the world" but this really is a good story... and she's on ~~our~~ her vacation (we had reservations to go camping... I wasn't able to go... for obvious reasons and she went with our friends) so she can't get mad at me until she returns :) ha ha! What was our fight about? The fan.

I am always... ALWAYS... cold. I hate the sound of the fan and I absolutely detest the wind blowing in my face while I sleep.

She is always... ALWAYS hot... She loves the sound of the fan and the fact that it covers up any "sounds of the dark" and she loves having air blown on her... especially while she sleeps.

You see... our fight started the night before... I woke up and was freezing... it was 65 in our San Clemente home and all the windows were open to allow the cool ocean mist to flow through the home. I got up to take some meds at 3 am... and I turned off the fan. The next night she kindly asked me not to... because she woke up hot (ok... this is where I'm going to plead my case to the public... HOT??? Are you kidding me? It's 65 degrees... that's colder than most people run their air conditioning... ugh...) So... in slightly kinder... ok maybe not... mmm... in slightly blunter words I explained my situation... I am always freezing... why does she get to be the one that wins with the fan??? Why can't we switch off and some nights have it off? Why can't we just relax in the 65 degrees???

She then informed me that I can do whatever I wanted for the next five days while she is on ~~our~~ her vacation (thanks for the permission sis... lol) ... and she also informed me that we are moving in 2 weeks and would each have our own room (my parents bought a new house... It's awesome (my room has a window box) still super close to the beach... and it has great rooms for the "grandkids to visit" yeah... find me a spouse first dad :) ha ha! I was trying so hard to buy my condo before they bought their home so I would only have to move once... but... we all know how that worked out. ) Anyway... I am slightly sad (ok make that really sad) that this chapter of our lives is coming to an "end"... but I am excited to have some space of my own that is fan free.

So... Here's where this story gets funny... I was awakened early early this morning (before the sun came up) by some "sounds of the dark" Now... mark it in stone that I'm the brave sister... I get up and check out whatever sounds of the dark she hears. She insists that I do so. "what was that noise?!?!" she'll whisper to me as she turns on her light "It's the cat" or "I rolled over" I'll say.

Well this morning I needed no whisper to hear the noise that was piercing through the quiet night all I could hear was... HEAVY HEAVY snorting... Kinda like a pig. Chatelaine stretched her legs and blinked a few times trying to get the sleep out of her eyes she was obviously not thrilled about being awoken in the early morning either. Her little cat body looked terrified as I got up to check on this LOUD... VERY LOUD SNORTING. "Chate" I whispered, "what is that noise?!?!?" Quickly I thought up a plan... It's obviously outside... and it's probably that awful animal that keeps eating all of my almost ripe tomatoes... grrr... It's probably the one that knocked my corn down last year... grrr... "SNORT SNORT" it got louder... Quick... turn on the lights... scare it away with light! This was a great plan...

All I could think was... I wish I had turned that stupid fan on... then I wouldn't have been able to hear anything... (P.S. never buy a fan called "The Blizzard" and expect it to be quiet despite it's claims to be very quiet... don't you hate it in stores when they have all the fans on display and they are playing loud music and you are trying to figure out which one is loudest?) I turned on ALL the lights in my room and the outside light and the sun-room light and the bathroom light... I figured that if it got bright enough "the creature" would go away...

Soon thereafter... I couldn't hear it... Chatelaine laid back down and closed her eyes... and I turned off all the lights... I heard it shuffle past my bathroom window and I yelled "shew shew!" The stupid thing woke me up of course I am going to chastise it!!!! Well... this wasn't the best idea... I apparently spooked the "poor thing" and then I figured out what it was... No... I didn't see it... but I SURE DID SMELL IT!

So... needless to say... I've been up for an hour and a half with every window in the house open... and the cool morning breeze couldn't seem to blow any slower.

And to think... this could have all been avoided if I just had the fan on to cover up "the sounds of the dark". Oh my sis is going to have a hay day with this one... and I'm sure we will have a good laugh.

xoxo- me

Escaping

2011-07-15T01:51:00.000-07:00

This evening... I escaped. One of the hardest parts about getting sick has been... the lack of freedom. I can't do anything by myself... The exhaustion can hit in an instant... the fever comes in a second... the confusion... can be scary... the narcotics... aren't fun.

But tonight... I escaped. I took a late nap (5 hours this afternoon) and avoided the narcotics (went way overdue on the pain killer... but dealt with it... I ~~needed~~ absolutely had to get out) ... I wanted to drive. I needed to get in my car and take off. I told my mom where I was going... and the route I would take... and that I was only driving a half a mile total... I felt like I was in high-school again and just got my license. I appreciate the concern my parents (and doctors) have shown with me driving... and I understand not driving on narcotics. But tonight... If I got too tired... they could walk the quarter mile and pick me up.

Slowly, I walked to my car and got in. Checked my mirrors and rolled down my windows. As I turned the key a sense of freedom rushed my body. I pulled out of my driveway and down to the first stop sign. I considered turning back... scared for myself... but trusted my judgement... I needed it... I needed normalcy especially after yesterday.

As I pulled into the parking lot in and got the closest spot to the pier I thanked God for providing it for me. Walking down to the beach I ran into a friend who played in orchestra with me in high school. We chatted for a minute I met her boyfriend and we realized we live 1 street away from each other... and as soon as I get healthy... we planned to go for walks on the beach. Then I walked the entire length of the pier... it took me a long time... with a few stops but I made it... by myself... pushing through the pain. At the end of the pier I watched a cute couple slow dance on the pier to the song the little shack was playing... and longed for someone to dance with.

Then slowly I walked back down the pier and stopped at the Fisherman's Restaurant. The lights on the pier reflected off the water so beautifully tonight... I felt like I was looking at a Thomas Kinkade. I sat by myself overlooking the ocean and prayed. I prayed for patience... I prayed for a plan... I prayed for peace.

The waitress came and took my order (I got some amazing fish tacos) and I enjoyed the sound of the waves crashing below me. As I finished my meal I was so thankful... thankful to be there... and thankful to finally be alone... I needed some time to absorb... plan... and pray.

After I paid for my meal and left the restaurant I stood next to the restaurant and watched a school of fish swim beneath me... back and fourth they would go... catching the flies that swarmed above.... Oh I am blessed. I am blessed to have tonight...

I drove home, walked in and found my pills... I had to take the maximum dose to get the pain back under control... but... it was worth it... for the freedom of tonight. I loved being alone... but I wasn't really alone... I had Him to talk to the whole time... and that's all I want.

"What if Your blessings come through raindrops? What if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You're near?
And what if trials of this life, the rain, the storms, the hardest nights, are your mercies in disguise?"

xoxo- me

I just need Him.

2011-07-13T23:56:00.000-07:00

Click play on the side bar after you read... yep I picked this song for tonight.

Her waiting room is filled with beach scenes... In a way... it reminds me of my maternal grandma's house. There's a painting of two children playing in the sand and some seashells in a vase. I sat on a wicker chair and waited for what seemed like an hour.
"Rachel? Right this way, Please go to room one."

My vitals were taken and the nurse brought me a soft leather chair to sit in. I looked longingly across the street at the mall where I ate lunch and watched the birds at least once a week before this started... oh how I wish for those afternoons.... drinking iced tea with lemon and watching the ocean glisten in the sun. Dr. "M" took forever. My mom and I chatted about where we would go for lunch after. And we talked about stopping by my work for a quick hello.

Then I heard the soft knock of the Doctor. She greeted me and we started handing papers back and fourth.
My fever record
her lab tests
She looked over my file.

"Well... I can only comment on one thing... the inflammation panel I ran came back high" (this was a different test with different markers than the one run by the endocrinologist) "I am so sorry... I have no answers... I have no reason for this to be high... It looks like you are just going to have to wait it out."

"WAIT IT OUT?!?!? You have got to be kidding me." I thought to myself... "there is no way I'm waiting this out... someone is finding an answer... this pain is unbearable... I can't stay on this pain killer."

She walked out of the room to check on a couple of tests that she could run. I couldn't look at my mom... tears streamed down my face. Why?

She gave me a couple more tests to have run and told me to send her the results of the rheumatologist. I set up an appointment for a month from now to re-check with her but for now... Infectious disease isn't the answer... She was wrong... it wasn't the west Nile virus... or any of the other 17 things she checked for.

As we drove through the parking lot and past my office... my heart beat fast... my tears raced down my cheeks as if they were participating in the INDY 500. I couldn't bear to go in... My mom didn't even ask.... she knew...

My heart cried out... Oh Lord... please hear my cry... Please... I need you.

When driving through San Juan Capistrano I rolled down the windows and found a song that always makes me smile, on my ipod... Today... no matter how loud I sung it... Don't rain on my Parade by Barbara Streisand didn't do it for me. I sung louder and louder... trying to mask my pain (much to my mom's ears dismay) and the tears wouldn't stop coming.They came rushing down... all forty five minutes while we drove home.

Then... I played the song that's at the top of my sidebar... and... it fit...

Although I know My God always hears me... Sometimes... I just want to know, I want to be reminded, that He is going to hold me when I start to cry.

xoxo- me

a little peek... all I want is a little peek.

2011-07-13T12:00:00.000-07:00

This morning I watched the sweet summer flowers outside my window gently blow in the San Clemente breeze . As I laid in bed, and my curtains blew out then in out then back in, I realized how how peaceful this morning was. The sweet birds that have made a nest in our lemon tree were singing their beautiful morning song.

My heart is anxious though. I can't rest in the peace this gorgeous morning. Today I'll find out if I have the West Nile virus. I wish I could just lay here, in my beautiful white sheets with pink embroidery on the top and let the day pass by. Today I don't want to go in to the doctors, I don't want to be told everything is clear. Today... I want my answer... I need my answer... I want to get back to living. I want to feel... good.

Today I want to walk out of this deep valley and walk up to the top of the mountain, ok... it doesn't even have to be the highest peak... It can be a little hill. I just want to see the view, have a little peek down into the valley. I want to see the blessings and be able to appreciate the struggles that I have had while climbing up. I want to know that there is a reason... a diagnosis.

Please Lord Please... let it be today...

xoxo- me

P.S. click play on the sidebar... I picked this song for today.

Results from specialist number one...

2011-07-12T00:00:00.000-07:00

Well.. I have some good news! It's nothing Endocrine related! Yeah... that's awesome! I only got those results back today... nothing yet on the WNV (west nile virus) I will get that on Wednesday.

When I walked into Dr. "B's" office today... I wasn't doing well... I sat, cross-legged with my head leaning against the wall, in the waiting room chair until the nurse called my name. She walked me down the hallway and took my vitals. No fever today... thank goodness... I'm so tired of having fevers.

I waited patiently in the room with my mom until the Dr. came in.

eh... let's backtrack... every nurse always asks if the woman sitting next to me is my mom... Really??? we look too much alike not to be mother and daughter... I told my mom...

"next time a nurse asks me I'm going to respond with... no she's my "life partner" that should get quite a laugh... eh... ok... maybe I won't... you would kill me... only cause you would have laughed 'till you peed "

needless to say... she wasn't amused... I know.. Stop being a smart alec Rachel! ha ha! :) I've gotta have some fun with them! )

Ok... So back to the Doctor. He walked in... sat down and quietly looked over my charts...

"I don't see anything... wait... let me check"

My heart raced as he walked back into his office... ugh... great...

He walked back with a small stack of papers with "medical terms" written all over them

Then paper by paper with lots of care he explained the results... This means it's normal...this is in the normal range... this is normal... this is in the low normal range... this is high normal range... this is normal...

and then... he comes to my thyroid...

"wait... this is... well... Your thyroid is slightly under-active... nothing to worry about yet... but it is slowing your metabolism down... we could medicate but it's up to you. But this is not what is causing your symptoms. And the medication may or may not work."

Oldish picture... still look the same... just shorter hair :)

My first thought? Great... my thyroid is making me "fat"... (that brownie I ate or pumpkin pie I love... or any other bad choices I've made... had absolutely nothing to do with it... I'm sure ;) ha ha!!) eh... I'm not going to go with that excuse... I think I just ate too many brownies :)

After discussing the pros and cons we decided not to medicate... I don't need anything else to add to my pill bag...( really that was my main reason.. lame ... I know)

He also noticed that an inflammatory panel was raised above normal... but he has no reason for that (rheumatology might.. but I'd rather not think about that). I was impressed with the care and concern he showed me... and thankful for great doctors. And... I know this sounds weird... but I was so thankful to have 2 things come back "not normal"... it helps to know it's not all in my head... even though the doctors all agree that something is seriously wrong... it's nice to see it on paper.

So... overall... he cleared me...
on to the next....

please continue to pray... and thanks for bearing with my honesty.
xoxo- me

vampires...

2011-07-10T22:21:00.000-07:00

Tomorrow I go in to specialist number one... to find out the results of all my blood work... All 27 viles and 2 bottles... Yeah... it's time for that story now :)

So My endocrinologist and infectious disease doctors decided that since I'm such a hard stick... they'd hold all their blood work... and run it together... so they didn't repeat tests and they could share information.... well...I can't imagine they could have taken more blood... They took about a pint and a half... that's more than they take when you give blood!

My blood had to be taken at the local hospital because of the tests they wanted to run... so I went in for what I thought would be 20 minutes... in and out... Well...I was there for three hours... count that... 1.2.3. yeah...

Half of my time was spent waiting to be called back (I get it... they're busy...). Then they spent a half hour trying to locate my vein... (see why they like to draw it all at once?) Then the young man who was getting the viles ready exclaimed, " Congrats... you now hold the record! I have never ever had this much in one sitting... lets hope your veins hold up!"

We made small talk... I told him about my condo that I want to buy... (yeah... obsessed much? It's ok... it's positive :) positive thoughts are good. ) As the "vampire" stuck the needle into my vein ( which he got on the first try... Yeah buddy!) I prayed that I would be able to give all the blood they needed... My veins tend to collapse... So I sat there patiently as the blood drained out of my body... At this point there were three nurses surrounding me... one fanning me... one holding water for me to drink and the other with a cool towel on my head... all because the vampire was freaked out that I would pass out and he wouldn't find a vein again... Ha ha!

Seriously... I was laughing so hard.. all this fuss just to get my blood... you have got to be kidding me!

Well.. 45 minutes later... I had to pee... they were still taking my blood... and I had to go... bad...

"Please!!! seriously... I'm going to wet the table! Like... no joke! I drank 64 ounces this morning... and you've had me drinking this whole time! I've gotta go!!!!... Ugh.. I should have worn a diaper!"

I had the whole office laughing hysterically. Then... they look at the order and realize one of the draws has to be drawn from two different sites... great... time to find another vein... ugh... But... They decided that this was a good time to let me go to the bathroom...

I have never had a nurse wait that patiently as I peed... She stood... waiting for me to finish... TMI? sorry... ha ha!

I got back in the chair and he stuck me again... and got more blood...

Then.. I was done! Finally! yay! only an hour and a half later! ha! The young man looked at me and asked who was driving me home... then he insisted he meet them... cause I wasn't allowed to drive myself!

I walked ~~him~~ the vampire out to the lobby and My sis introduced herself and he instructed her to not let me out of her sight... no exercise... and I needed to eat steak... We left laughing... Only I would have such a dramatic blood draw...

So... we disobeyed... and went to in and out... but.. I had steak for dinner... and 7 times since then... did you know it takes 35 days for your red blood cells to replace themselves? Oh and... big shocker... my iron is low now! Ha!

hope I had you laughing...

pray that tomorrow... we get our answer... Please...
xoxo- me

all who are weary

2011-07-10T00:20:00.000-07:00

For the past few months... I've been telling myself : Be strong... be strong... be strong... Don't... whatever you do... cry... don't give into weakness. Be brave. The Lord will bring you through. He has a plan.

I've been in total denial... Like I said in my last post... I've been in complete denial... I don't want to think that I'm sick... I don't want to admit to my pain. When people come to visit... I pretend I'm fine (well... as well as I can pretend) So... I've stopped answering the phone... and rarely return emails or texts... I don't feel like talking about "it"... (P.S. I am so sorry to those of you whom I might have offended... please understand... it's not you... I just can't deal with any of it.. nor do I have the energy to... my heart is burdened... and I'm trying my best to hold it together.)

So... I've been in denial or should I say I've been trying to be in denial... That is, until tonight. I work with the Jr. High girls at my church. My dear friend Mary and I have been working together with them for 2ish years. We Love... absolutely love mentoring them and teaching them about the Lord. Well... It hit me like a rock... as I looked at my calendar... there it is... Tomorrow... they leave for camp. When this all started for me back in April I never thought I would be still un-diagnosed by the time we they left for camp. Well... I wont be going with them this year. I will be missing the chats, the laughs, the pranks they play on me. I will miss the late night talks with Mary. And my most favorite part... watching their love for the Lord grow as they grow in their knowledge of him.

This breaks my heart.

My heart will be with them and my prayers will be too as they journey down to San Diego and have the time of their lives :)

Tonight... I let myself cry. I mourned the loss of my time with them. The loss of my "growing" at work (I've missed some really important training I needed to take to continue moving up... I'll take it when it's available next... but... I'm super bummed about it) The loss of my time with friends... The loss of my energy... The loss of life as I knew it. The past months have all become a blur... I can't believe it's already July. When this started I was getting ready for my Royal Wedding Party at work... I had scone, clotted cream, and tea sandwich recipes ready in my purse... they are still there. The party didn't happen.

So tonight... in all my pain... and through the fever that just came... I let myself come out of denial... I let myself cry... I gave my burden away... What's that verse... I think it's in Matthew 11 and it goes something like... Come to me all ye who are weary and heavy laden and I will give you rest.... That keeps running through my mind...

Oh Lord... please give me rest... Let me rest in your promise.

I can't believe I still don't have an answer... we think we do... It's probably the West Nile... but I'm still waiting on results... my heart is heavy... and I just wish I was with "my girls".

I hate mosquitoes

2011-07-05T03:36:00.000-07:00

I haven't felt like writing lately... I think I'm in denial about my current situation.

Just tonight I was telling a close friend how great I was doing this past week. I've had minimal pain, and I seem to be getting stronger. I have been so encouraged....

and now... tonight... right now it has hit me... It's three am... I've taken as much pain killer as allowed and my body is revolting. I woke up... soaked... chilled... and ick... I'd rather not go into too many details... but I think these last few days... I've been in denial... that anything is still wrong... despite my daily fevers.

If a tree falls in a forest does it make a noise? I keep thinking... if I don't take my temperature and record it in my log for the doctors... will I still have a fever?

I saw two specialists this past week. An infectious disease doctor and an Endocrinologist. I'm seeing another specialist on Thursday.

The infectious disease doctor was amazing. She had to have been at least my grandparents age... if not older. She asked me plenty of questions... where have I traveled... What shots have I received... What's my favorite hobby... what do I do for fun?

As I filled out her stack of papers... I began to wonder... is this a dating application? I have been known to ask similar questions when I jokingly say I'm taking applicants for the position of husband. (Oh... and p.s. I really am taking applications... ;) So if you know of anyone... err... )

As she poked and prodded we made small talk... I eyed her adorable white high heels and our conversation turned to shoes... (what else would I talk about... that day I was wearing my "cute flats" the ones with flowers on top)

Then she said the tell tale... I need to ask your mother to leave the room for just a minute...

yeah... I know where this is headed...

My mom and I have no secrets... I have nothing to hide... I take my purity seriously. And it wont be compromised.

After I tried to convince her that I was absolutely at no risk for any sort of "disease" and she didn't believe me... I pointed her to some documents about my endometriosis surgery. Yeah... after that... she believed me :) and then she let my mom back in... She said my symptoms didn't fit that anyway but she has to ask. What a sad culture we live in... That it is so rare to keep your "cardinal treasure " secure until marriage...

More pokes and prods to follow... and then she blurted out... I think I know what you have....

"I'm pretty sure it's the west nile virus."

Are you kidding me... a stupid mosquito could have caused all of this?!?! I hate mosquitoes! I am ALWAYS getting bitten... Even with bug spray! no... this is ridiculous... So... she and the endocrinologist ran some tests... 27 viles in all... and two bottles... that's a story for another day... the story of how they got my blood...

and hopefully between the two of them... they will figure it out... and if not... specialist number three is on Thursday...

xoxo-me

P.S. I had a wonderful 4th :) how was yours? xoxo

winner winner!!! and update... and injured wing

2011-06-25T12:20:00.000-07:00

So... I didn't quite make it to 25 comments... but I did make it to six... (yeah... one person had to send them in because of computer issues :) ) I know that... 89 people could have entered (total nerd... I have a website that tells me how many different visitors I have...) ... but 83 of you didn't so... maybe you all were boys? ha ha! oh well... good job you six people :) ha ha! Thank you for telling me what you were thankful for :)

and the winner is.... are you ready?

Well I asked my sister to pick a number... she asked me why.... I told her I was doing a giveaway on my blog... and she said 3 ... she had no idea about the giveaway... She's been busy getting ready for camp.

So Congrats Mary N. :) Since I know who you are... and where you live :) I'll get you your bag soon :)

And to the rest of you thank you :) thanks for supporting me... and thanks for reading :)

Ok... so now to the news...

I went back to the dr. yesterday... I've had a really hard time getting into the specialists that he recommended... I have a PPO (thank you work) and every doctor who I called said the earliest I would be able to get in was JULY 20th!!! Are you kidding me? Seriously? I've been sick since April 25th. That's not happening...

So... I pleaded... I cried... and he helped. I now have Stat appointments. Thank You Dr. and Thank you Lord.

In other news... I was cooking on Monday... making an egg dish I had to throw into the oven for lunch... and with my shakes... I shook and burned my hand... yeah... wonderful right that's all I need... an injured wing? So... we iced it... and wrapped it... and by yesterday morning... it was so swollen... we were sure it was infected...

It was... the Dr. was very pleased that we had come in. apparently the Dorsal part of your hand is very dangerous to get infected. He explained to my mom and I that it can travel very quickly... and well... eventually... you can get really really sick. So.. he put me on antibiotics and he gave me an ointment I have to apply 3x per day.

So now we are on hand watch 2011. If my "injured wing" swells any more... or becomes any redder... I have to go get iv antibiotics. great.... So... who knew my stupid symptoms could cause me to get a one inch burn... which could cause all these silly things. oh well... So that's my update for today... and I'm no longer allowed to use an oven or stove... and no more flapping my wings to fly... per doctors orders... until the shakes stop.

So today... My sis and I are going to go shoe shopping... She needs cowboy boots... I can hardly wait :) I love shopping with her... even though she isn't as fond of shopping as I am :)

Do you have any plans for this weekend?

oh... and it's 20 after noon... sorry about the morning promise :) I almost made it :)

xoxo-me

Thankful Thursday- and giveaway

2011-06-23T15:56:00.000-07:00

Today... I have decided to recognize what I'm thankful for... maybe it will help me to remember and recognize how blessed I am.

1 Thessalonians 5:16-18 says:

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

Today I am thankful for "the usual" (Salvation, Family, My church, a home, food, shelter, and water). These are the things... That never seem to go out of my mind... I am so blessed. Although I think it is so important to recognize our thankfulness for all of these very important (most important) things in our lives... I also need to recognize the little blessings... the gifts in our lives.

Recognizing the little things can sometimes be harder than the big ones... It forces us to find those little blessings... Those things that didn't have to be put in our lives... or day.... But for whatever reason... they were... and they are blessings.

So today... here are the little blessings... I am thankful for.

1. The birdies that woke me up with their sweet chirping.

2. My Cosmos flowers that just wont stop blooming this spring.

3. My blog readers :) You are the best! thank you so much... P.S. Because I am so thankful for you...there is a giveaway at the bottom of this blog today from my Shop :)

4. Dresses... pretty pretty dresses that have lace or eyelet or ruffles.

5. High heals... yeah... I can't wear them right now... (Confession...I have been putting them on while I'm sitting... or laying down ... and just looking at them... kinda... pathetic... ha ha!)... but... ah... I love heels.

So... here's the challenge... wanna join me? comment with 5 little blessings you are thankful for and you will be entered in to win... This little zippered pouch! Perfect for... well anything :) It's 5 inches high and 8 inches wide. And perfect for summer :)

THE PRIZE!

So... Just leave your name and the 5 things you are thankful for... and you will be entered to win this handmade-by-me zippered pouch :) Winner will be chosen and announced at random... On THIS Saturday Morning...

Don't be shy... yeah... YOU... I'm talking to you :) enter in to win! You have a much better chance of winning this than the lottery! and if you are a boy... you can give it to your sister... or your mom... or... you can have a fabulous bag to give to your girlfriend... so... don't be shy! I really really want to hear what you are thankful for :) So please... Comment :) ok... have I persuaded you yet? ha ha :) oh... and you can tell your friends :) My goal is to have 25 entries :) and... sorry... you can only enter once.

anyway...

I can't wait to hear the little blessings you are thankful for :)

xoxo-me

Today... I can't.

2011-06-22T13:06:00.000-07:00

(K... first... click play on the right side of the blog... I picked this song for today while you read this post)

Today...

I don't feel like smiling.

I don't feel like laughing.

I don't feel like talking.

I don't feel like reading.

I don't feel like writing.

I don't feel like texting.

I don't feel like calling.

I don't feel like... anything.

My world is dark today. The clouds are covering my bright blue sky. Tears are welling up inside my eyes and they just don't seem to stop. I am discouraged. I am weak.

What, might you ask, is the cause of these feelings?

This morning, I couldn't get out of bed.

That freaked me out. How sick am I getting? So sick that I can't stand up by myself? It was purely my physical body that stopped me. The pain.. the weakness. The shaking.

My skies are gray. With no sight of blue... anywhere.

And today... that's ok. I don't need to be told that everything will be alright... that I will get better... I don't want to hear it... today.

Anyone who has ever been sick... can tell you... you need to have days like today. We all have them... people just don't like to admit these feelings... but I think it's important. It's important to be honest. It's important not put on a happy show... 'cause... well... Today... I can't.

Today... I am going to accept... and tomorrow... tomorrow... I will move on ... and the skies will have a small patch of blue.

that road marked with suffering

2011-06-19T22:37:00.000-07:00

This weekend was good... My best friends came for a visit... and we played Settlers of catan and ate cake... I was grateful to have them visit even if it was only for a little bit.

Today I made it to church... I almost didn't... last night was a bad tummy night... again... so... I was up and in the bathroom... too much... which didn't make for good sleep.

As I walked into church this morning... I was so happy to be there... I was determined to not "appear sick" or feverish... The first thing my pastor said to me, after asking how I was doing, was...

"well... you could've fooled me"

That thrilled my self-conscious mind. There has been a sense of embarrassment to this illness... it would be easier if I had an answer for my weird visible symptoms... the shaking... the weakness... the beads of sweat that appear on my upper lip and forehead at any moment, the need to run to the restroom with my hand grasping my mouth so tightly... the protruding belly (oh... about that... I have a confession... I have worn the same dress... EVERYDAY... for a week... yeah... it's currently the only thing that fits... my stomach has grown 12 inches... but I haven't gained a pound... thank goodness for the small load cycle on our washing machine!) so ... yeah... I get embarrassed... My mom says I need to get over it... people understand... but... I can't help but feel... embarrassed.
Well.. as we stood in the pew, during the worship service, we sang the song "Blessed be your name". I've sang it hundreds of times... maybe even thousands... but... typically it's when I'm ..." in the land of the plentiful"... I'm not in that land right now...

"Blessed Be Your Name

In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name"

And then... I couldn't hide it any more... I couldn't hide the pain... the pew in front of me had tear  drops sitting on the wood. Shoot... I don't like to express emotions in public.. I'd rather sit behind my computer... and do it... not here in church... not now... I don't want to be seen... I don't want to be a distraction...

Why is that verse so hard to sing?

"Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name"

Then... I realized... There ~~was~~ is so much pain in the offering... It was hard... this is hard...
And I know... we all have it... we all go through pain... we all go through suffering... but because of what He did for us...we must praise him... we must say Blessed be Your name... we must choose to say it...

Tomorrow I go in... for some more tests... and appointments...

And I will continue to say to Him... Blessed, Blessed be Your name. And thank him for teaching me patience.............

and perseverance.

xoxo-me

I need to buy a tire gauge...

2011-06-17T16:53:00.000-07:00

Today was my last trip to the Oncologists office.

Thank you Lord.

Don't tell anyone... but... I stole three dum-dums lollipops from his office... I figure I earned them... When the nurse took my vitals I was running a fever... and had very low blood pressure. We talked about my flat tire (I'll get to that later... quite funny) and she took me to my room.

We waited for about two minutes and... the Doctor came in and said...

"Negative, Negative!"

He exclaimed it as if it were a celebration... I sat... In disbelief...

ok... So I don't have castlemans... Or cancer (wow... I can finally say that word).

He looked at me and with sorrow in his face he said...

"now we just have to send you to two more doctors... I am so sorry. Let me go make some calls."

My mom and I sat in the exam room... with a painting of ambiguous fruit hanging on the wall... and without saying a word knew exactly what each other were thinking... man... this stinks... we just want an answer... but we are so happy it isn't cancer or castlemans...

I sent some text messages while I was waiting in the room and let friends and family know the good news... and the bad. And tried to figure out how I was going to go on from here...

I went home and did my usual... sleep off the news ritual... Good or bad... I sleep... it's how I accept things... process... Restart...

So now you all know... Please pray that Monday (my next doctor's appointment) would give us some more guidance. I don't know how much more I can take... My walking is getting more and more unstable as each day passes. The pain is so horrible. And my fever's just wont go away.

So... now for the funny story...

Last night... My parents had picked up my dad's car from the shop. It was getting it's air conditioning fixed... Well as my dad drove it home... it overheated... eventually he made it home after a few stops to cool off.. (there's nothing like picking up your car and having it be more broken then when you brought it in.)

He needed to take my mom's car this morning... And we were going to take my car ( I drive an adorable smart car... yeah... Her name is Wendy and she is cuter than cute she has personalized plates and everything :) they say something about ladybugs...I know...obsessive gardener).

Well... this morning I got really sick... I threw up in the middle of the night and then this morning.... not totally uncommon for me right now... but it still stinks every time. So needless to say I was running a little slow... After taking some prescription anti-nausea medicine my doctor has prescribed... I was ready to go (only 5 minutes behind schedule... praying for no traffic).

We walked to my car and... she had a flat... SERIOUSLY?!?!?! we had no other car to take... she had enough air to get to the gas station that was about a quarter mile away... this was when I had more sense-ability than my mom (a rare occasion)... she wanted to just drive it... all twenty miles to the appointment... yeah... I wasn't going to do that to my baby... I convinced her we would get in an accident and die... we had no choice but to take more time.. Finally we get to that gas station... and pull up... put our dollar in... and pull the air thingy out... it only came out two feet... the thing was broken...

My mom was in tears... and I was laughing my head off...

"It's ok!" I said "we will make it... let's drive 15 feet to the next one"

"we need to get to your appointment!!!" she proclaimed... loud enough for all of San Clemente to hear.

We drove to the next one... and the rope thingy pulled out... I called the doctors office and told them we were running about 10 minutes late... because we had a flat.

Well... it was there... I had to do something that my great grandfather would have turned over in his grave about...

"eyeball it"

The stupid air machine didn't have a tire gauge that worked on it... so... we eyeballed it... and hoped we hadn't over inflated... I got chewed out by my mom for not keeping one in my car...(that was great grandpa's thing) and we were finally on our way...

Mom and I laughed about it the whole way... I said it must have been a good thing... cause we already had a very bad morning... with the puking and tire... it couldn't get any worse...

Well, we didn't get the "answers" we were looking for... but we did get some very good news... no cancer.... no castlemans... but still... no answer.

On to the next doctor.
xoxo- me

still waiting

2011-06-16T22:23:00.000-07:00

I'm still waiting. I don't know how else to say it... but I'm still in this horrible waiting position. My body hurts more and more with each day. For a while the pain had flattened... It wasn't increasing with each coming day... but just staying steady... but now... it's feels as though it doubles daily.

Tomorrow I should know my results of the cat scan... I'm terrified.

This whole road has been questions... I haven't had one thing that was an exact answer... I feel like I take 4 steps forward and 7 backward... Every doctor has told me that... there is something very wrong... we need to find it.

Times like these can be very difficult for those around the "sick one". Everyone goes on edge... say one wrong thing and people explode. The normal peace is replaced with frustration and anger. A desire to "fix" and when they can't fix... it becomes more frustrating... We cling to God's word and promises... and pray for patience.

Tonight... as my hands shake while I am typing this... and my chest aches with that horrible awful ache I knew so well six years ago, I look to tomorrow... I wait for tomorrow... I wait for my answer.... I want this to end.

Lord... Please take us out of the valley... show us the path.

xoxo-me

Video update

2011-06-16T01:39:00.000-07:00

So... I'm trying to learn to be more techie... and tonight was a really, really, really, rough night... I finally had the pain under control when I recorded this... On my way back from the pharmacy tonight... I had a meltdown... not just a minor one... big old alligator tears running down my face meltdown... My neighbor witnessed me... kinda embarrassing... but... oh well... I'm only 20 years away from being 4... right?

So... I was pretty tired when I recorded this and my eyes kept closing... it happens all the time now... I just can't keep them open. so... sorry about that...

I hope you enjoy watching me make a fool out of myself :)
xoxo-me