Wednesday, February 29, 2012
I have been meaning to post an update blog, but a lot has happened. And that "a lot" has affected the use of my hands even more. My husband refers to this type of situation as a cr*p sandwich. Forgive me, but it does seem appropriate!
We spent about 4 hours at the research facility clinic on Monday since my health issues were screaming bloody murder with a big nerve flare this last Thursday.
I got another ECG, the usual blood pressure tests, etc. No big deal. But once they started to really look at the lesions on my hands, things changed a bit.
The doctor examined me and then called in a cardiologist to administer nitroglycerin (minty!). Then I got to see their rheumatologist (poke poke squeeze, OW!).
All three of my medical musketeers gave me a discouraged looking face and a somber head shake. It's never good when a doctor says, "oh no", let alone all three of them.
Come on guys, I need good back up singers here to get me home!
All of this because one of them blurted out that they were trying to save my fingers. Ok, now we were a bit freaked out.
Next they gave me a cortisone shot, and now I have a small pile of Px's.
So what do I have in my bag of tricks? Lots of aspirin, nerve drugs, prednisone, nitroglycerine and something else (can't remember). My brain???
My wonderful hubby made 2 trips to the pharmacy to get the new Px's, and even made sure to go get me some silly band-aids to go over the nitroglycerin cream (Toy Story!). The only sour part of that great deed, was that he also came home with a giant bag of Reece's PB cups and TWO boxes of Swedish fish (which I love).
I asked him why he strayed from the list (Lord knows we always send them over with a list for a reason, right?!), but he said that he just wanted to get me something to make me smile. Aww...
I had to return the EM drug yesterday. And it WAS working too. I had more confirmation of that when I was able to wear my shoes for 3+ hours at the clinic! For people with Erythromelalgia, our shoes are always off. ALWAYS. That's a key symptom of EM.
The facility director called us later for my exit interview. She said that they were all a bit down in the dumps that I had been removed from this drug trial. One of the nurses told me later that when the director hung up with me, she cried. That makes me even more sad!
They tried to file for something called a 'compassion', where the drug company ideally gives me the drug to use at home while it is still in the testing phase, but they won't. I truly appreciate the effort though. It's too bad that my body was not playing well with others.
So now I have daily appointments with both the rheumatologist and the clinic doctor at 9:00 AM to check my hands. Part of me feels very privileged since it take months to get in to see my regular rheumatologist back home in CA : ).
But I just want to go home. I've wanted to go home since last Thursday, but we are waiting for the 'thumbs up' from the doctors.
Until then, I am not cleared to fly anywhere or leave their care.
Boy, if that doesn't that make me want to go home even more; to my own bed, to see my furry Jit-zu kitty and Olive the wonder puppy. I want to eat my hubbie's grilled chicken and veggies, and smell the cold ocean air on our front porch.
One of my spark friends told me to think about the things I won't miss from that drug trial.
I am pleased that I don't have any more pain induction tests.
Hey, no more tinkling in a cup, flashing my chest for all of those ECG's, or blood draws either!
Did I mention that I would bribe the nurses with gum if they could get my vein in the first stick successfully? It really worked! Orbitz is like gold!
Let me give you the visual I'm looking at currently in the mirror...
Fabric gloves to protect the lesions on my hands from opening, Toy Story band aids, my hairstyle a bit off (let's see you try to put your hair in pony tail without using your fingers), and crooked penciled in eye brows (gotta have functioning fingers to draw those puppies on!).
As for my insides...
Belly contents of bad hotel room coffee (clearly an offensive crime right there), too much sugar-free gum (to dilute the metallic taste in my mouth from the nerve drugs), and daily meals produced by our mini microwave.
Note to self: Brussels sprouts cooked in hotel coffee mugs within the mini micro make the room smell foul! My DH was horrified as he continually waved the hotel room door to dilute the noxious cloud, Ha!
So now we wait for my bod' to heal enough to tolerate the pressure of the flight. Can't bleed out on the plane like some scary tv episode.
I only lasted 8 days on the drug trial. We've been waiting 4 days to go home.
I know that I was meant to do this trial though, if only for this short stint.
I feel blessed to have been a part of it, but am so sorry that my current health drama would not allow me to complete it.
This is usually where people sign off with something like, "well, at least I have my health", right?
Well, I don't.
But I do have a fantastic (and extremely handsome) husband as my support system, as well as my real world pals, and all of you Spark friends to keep me moving toward a cure.