Tuesday, February 28, 2012

Finally a Diagnosis

I've been avoiding this...

Honestly, I'm terrified.

I know that I have made so much of my life public through the last year, none of which I regret, but this... this is somehow scarier... Telling the world that I have been diagnosed.

I've written and re-written it a million times in my head. I've tried telling a few friends... even co-workers... before I write it in stone... and honestly... I'm struggling...

I want to tell you... how I got diagnosed...
I want to tell you about the awful tests I had go go through
I want to tell you about the glue I'm still finding in my hair 2 weeks later.
I want to tell you about the crazy psychological testing they had me go through to make sure there weren't any issues (yes... I passed them with flying colors... I'm not depressed... I'm not anxious... I'm not a hypochondriac... I am perfectly... normal... but I did find out in a 700 question test that I am "slightly concerned about my health"... shocker I know... and I also learned that apparently making  a joke about seeing a big bunny named Harvey isn't appropriate...)

I want to explain how I was diagnosed with a disease that, although it has been placed in a "category", doesn't have a name... and they don't feel that the disease fits in the category... it needs a new one...

But why is it so hard... Why can't I just come out, say, and calmly explain all of this... I think I'm still processing...

But here it is... I will give it a try... This is all the information I am willing to give at this point... and only this... in time... I'm sure I will get there.. but for now... here is my story. 


The doctor had my mom and I sit down in his office... my hands were sweaty... my knees were weak... My heart felt as if it was going to beat out of my chest. 


"It's very rare... we see about 2 people a year with this... It doesn't really have an appropriate name at the moment... we don't know much about it... but what we do know is most people have a really good outcome."
He was trying to explain to me the diagnosis that they would give me if the 4 blood tests that were still " processing" came back negative... The tests were for really rare neurological cancers... they have the same symptoms as this disease that had now been tied to my name... Somehow... I was about to be diagnosed... 


This thing I've been waiting for this past year couldn't have made me more angry and excited at the same time... My face was hot with anger... I was mad! He looked at me and kindly asked how I felt about this diagnosis. My response was less than professional...



My carefully constructed words would not suffice... it had to be more.


"Frankly, I'm angry." I said, "You are going to tell me that not only do you not have a real name for my illness... but you don't know much about it either?! Yes... I'm mad. I want a clear... consicse... straight forward, take this and drink a glass of water diagnosis... and here you say... cinical trial?!?!? Oh... and that currently there are no drugs to help??? I'm supposed to just work my way back to health... and it could take 6 to 12 months?!?!? YOU have got to be kidding."




Totally not my proudest moment... I don't like to represent myself that way... but in this case... I had to.


He smiled (right... you are going to smile at me?!?!? are you crazy!?!?) and told me he was proud of me... my reaction is completly justified and called for... he explained that he would have been even more angry had he been in my shoes.


(Ok... doctoring 101... this is an excelent way to get your patient to trust you. Everything changed at that moment... He turned from my worst enemy to my best friend... he justified my anger... he told me it was ok.)


Then he explained that I needed to wait for the last 4 blood tests to come back before I was "fully diagnosed" they would take a week... These were just the last... possibilities... make sure you rule them out... 


Then he began to tell me what had led them to this diagnosis... one factor was this horrible test... this test I had to go home and sleep for 4 hours after to regain my strength... 


In this test they put me on a table... had me breathe into weird things... elevated and lowered the table... turned the angle on it... checked my temperature and blood pressure... 


In a normal person... without this disease... their temperature and blood pressure regulate on their own... when they angle the table for the person to be standing up... they don't get weak... I almost passed out... I got so nauseous.. 


Some other examples... a normal person... their eyes dilate at the same speed... mine don't... a normal person... if you hit their knee... their leg goes up... my right one does... my left doesn't. In a normal person... if their leg gets hot it will cool at the same rate... some spots wont stay splotchy red like mine.


He explained it as a physiological (meaning physical body)  disconnect between my nerves my brain and my muscles. My brain... not my mind... nothing psychological.... physiological (I only say that because some people get the two confused).


He told me about the last patient they had seen with this disease... and she was paralyzed from the waist down... he told me about her treatment... and her recovery. 


yes... recovery...


That is music to a girl's ears... recovery. 


He laid out a plan for me... that basically involved... about 92985060194 hours of physical therapy...  and reconnecting exercises (kinda like training after a stroke... basically I have to retrain everything.) 


I went home... and waited... those blood tests were taking forever to come back... I was really happy with this physiological issue... and really didn't want my diagnosis to change... 


When I was out walking my dog Molly... the phone finally rung. (oh yeah... if you don't follow me on FB you probably haven't "met" her yet... she's my therapy dog... to help things reconnect... I get to keep her forever :) we adopted her from the local shelter... and she is amazing!)


"Hello?"
It felt like an eternity until she said hello... thanks to caller ID I knew it was the Doctor's office calling...


"We have your test results in."


Ok... get to the point LADY... 


"Your results are negative."


"Seriously... Praise God!!!! WOO HOOO!!!" 


So... I didn't have a really rare Neurological cancer... I didn't have MS... I have this Super fun disease that no one really knows about... they don't really have a name for it... and don't really know what causes it... or how... Ok... that's ok. 

There you have it...That's my story... That's why it's hard to explain... because once again... I have a really rare disease... 2 people a year... that really (excuse my language) sucks.

I told God that next time I want something easy to diagnose and fix... like a sore throat...

Lucky me... God has a sense of humor... and I've had one for 9 days. Dr. says it's just a virus... not strep... so I just need to sleep it off.

So tonight... as I was walking Molly down our street... the wind blew on my cheek... and I realized it was time...

I know I've rambled on for too long... but thank you for reading... And Please don't stop praying... it's going to be a long road of recovery for me...

Thank you!
xoxo- me

5 comments:

Debby L. Benis said...

Well, Rachel..... As a person suffering with MS, it is not a disease I wish on ANYONE! So....I am so, so, so happy that it is not MS for you! It doesn't dismiss your struggle, but I am so glad that "recovery" is going to happen for you and that you can have a positive ending to this valley God allowed in your life for a season. I will continue to pray for you for wisdom, strength and courage. Keep me posted on how you are.
With hope,
Debby Temple Benis

Anonymous said...

I'm at a loss for words right now... thank you for sharing Rachel. <3

Kathleen said...

Praise God for His faithfulness. I'm so happy that you have a diagnosis and there is "light at the end of the tunnel."

I will continue to pray until you say "uncle." :O)

Love you!

Crysti & Jerome said...

Praise the Lord for His love and mercy! I've been praying fervently for a miracle for you. I guess I don't get to see an overnight miracle like I was praying for...but this is a miracle still. You are 1 in 2 people a year. Honestly, girl. I mean, I know you are a unique and marvelous person, but I didn't realize just HOW unique you are :)
I'm so thankful there is treatment and eventual healing in store for you. So, so thankful! Maybe now I can stop crying each time I pray for you.
Love, love, and more love to you and your family,
Crysti

Ashley said...

Praise the Lord for a diagnosis that is not only NOT terminal but it also has a road to recovery! I prayed for healing for you and will continue to pray for both healing and patience with your recovery and yourself. I know being sick and not able to just go and do everyday things is probably not easy for you, but just remember to show yourself some patience and grace while you're getting back on your feet. I'm sending love and prayers your way from La Conner, WA.