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Carla’s Story

Site created on September 26, 2018

Hello. My name is Carla Shaver.

I am a Sarc Survivor. Here is my story....

It was February 17, 2017. I was enjoying an abnormally
warm day outside with some family. I was sitting outside watching the
children play as if they've never seen summer before. The adults were
chatting it up talking about whatever came to mind. The
teenagers were throwing hoops about five feet away. And were trying
not to get hit in the face with the basketball, as we sometimes
do. I got up to throw the ball and that's when it happened. I felt
"different", per say.
As the time went on it got worse. I was hot, hotter than I
should've been, feverish, and completely t of breath. I
thought it was time for a checkup. So I called my Doctor and
we set up an xray at the hospital. I'm not new to this routine. Feel sick.
Get an xray. Ive had lung problems for as far as I can remember.
I get to the hospital. Fever. Lets get an xray. Lets take blood.
And of course
good ole faithful EKG. And there it is. Bacterial Pnemonia. Sent
home with antibiotics and faithful Prednisone. To make a very long
story short this was the worst sickness I've ever had. I;ve had
pnemonia a dozen times in my recent adult life, but nothing compared
to this. I ended up back in the er 4 more times in 2 weeks.
Nothing was helping me. Although my recent xray said otherwise. I
WAS getting better. Why wasn't I feeling it? So I continued on the
medications.
Nothing.

I then got sent to a pulmonologist. I've seen a few of
those so this wasn't new to me. Back in 2014 I had a Mediastinoscopy
and Bronchoscopy with results of Myceliopthora mold exposure.
My first appointment went ok. I brought my 63 page binder with
all my recent results as well as my notes. (Yes I keep lots of notes)
He looked at my recent chest CT from the emergency room and
said " Oh you have Sarcoidosis". It is affecting your lymph nodes and lungs
at this time. Stay on the Prednisone and Ill see
you every other week. So I got my stuff together went home
and researched my heart out. What is this? Doesn't sound too bad.
Then, upon further reading I realize I spoke too soon. This is
horrible. How am I supposed to live with this? This is too much.

Well here I am 4 months later and still dont have an
answer. The only answer is... Yes I have Sarc. No I dont want it.
And maybe, just maybe remission will come soon.....

Newest Update

Journal entry by Carla Shaver — Oct 19, 2018

I hate to even say this aloud, or type it, because as I'm doing such, I'm feeling defeated. I had to stop my MTX, not by choice, trust me deeply on that statement. But because the Doctor front isn't going so well. My Immunologist, in my opinion, needs medical training so I've been very reluctant to go back to see him. My Pulmonary Doc showed her ugly head when she compromised my health, no, my life actually with a medical decision that a five year old wouldn't concur with. I should be seeing Cardiology, however I've not made that appt as of yet and my Eye specialist. Nope. "Carla.. If u don't see me regularly, or use the eye drops 3x a day you WILL go blind" .. Yet here we sit. I wish I had a great answer as to why this is my current behavior other than fear. If I'm not having 3 appts a week or a million tests then this isn't really happening right? Yea that's my thought. Get my big girl pants on and keep moving.

Until next time

Read More of the journal titled "The Trek has Halted."

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