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Nitroglycerin and Toy Story band-aids, really?

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.
Great idea!
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.

'Nuff said.
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Member Comments About This Blog Post
  • MISSB8604
    Oh my dearest girl, I am so sorry you're going through this but I am proud of you for doing the best you can in regards to your eating. You are seriously a SUPERSTAR and I am so proud to call you my SparkFriend.

    You're in my thoughts and please keep us updated when you can.

    We're here for you and we love you!

    2196 days ago
    I am so sorry I didn't see this until now. I have been working odd hours, 12 hours last Thursday night/Friday morning, 10pm last night to 6am this morning, the same again tonight. But I read your words and I want to kick myself in the butt. I have absolutely NO reason to be feeling sorry for myself. How on earth you maintain a sense of humor that I absolutely love and would kill to have I will never know! You are so brave, and so silly, and so wonderful. And I do love you so. I wish I could make you all better.
    emoticon emoticon
    2202 days ago

    Comment edited on: 3/7/2012 6:46:47 PM
    I know I'm late and wrong. Forgive me while I catch up with the goings-on of my friends.

    First of all.... emoticon emoticon

    Once you said Reece's and Swedish fish, you lost me for a moment. I kept thinking of the candy that is stashed away in my drawer for emergencies. Then I had to reel myself back in and focus. Okay. I'm focused. emoticon Your husband is really sweet.

    Then you mentioned the cold ocean air and you lost me again. I'm from the east coast and now I want to go to the beach. Okay...I'm back emoticon

    Seriously though, I think you are so emoticon . You're going through so much and yet you still have a positive attitude. I'm so glad we're friends and I pray for a treatment that works for you soon.
    2204 days ago
    "My husband refers to this type of situation as a cr*p sandwich. Forgive me, but it does seem appropriate! "
    * I would agree.

    "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!). "
    * emoticon

    "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. "
    * emoticon emoticon emoticon

    I really hope that you can overcome this.

    I'm going to do some 8th grade detective work on this "Erythromelalgia" that you speak of.

    again, emoticon emoticon emoticon

    2205 days ago
    you are just incredibly brave (although i'm sure you don't feel that you are). i've been looking at your blog's via Cannie's comments for a while. frankly i'm glad your husband brought you those reece's and swedish fish and i hope you enjoyed them. and i hope you go home soon. and ... i guess that I hope ... is all i really have to say.
    2206 days ago
    Prayers and hugs to you girlfriend that everything calms down so you can return home! Though short, your participation in the trial happened for a reason in the long term plan. Good things are going to happen as a result - I just know it!
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    2207 days ago
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    2207 days ago
    That seem a little bit too tough! emoticon
    2207 days ago

    2208 days ago
    You are so brave Bren! I love how you can still make the best of a bad situation. That's what keeps us going. I hope you can get back home soon and enjoy your ocean breezes. Love that man of yours, he's a keeper! emoticon emoticon
    2208 days ago
    So proud of you for keeping your head up. And give that fabulous husband a hug from all of us. He does sound like a good one. ;) You are being so strong and you are such an inspiration to all of us. Thank you! emoticon
    2208 days ago
    I hope you get to feel that ocean breeze soon emoticon To infinity, AND BEYOND!
    2208 days ago
    emoticon Sending a lot of positive thoughts your way. emoticon
    2208 days ago
    If I knew your hotel addr, I'd fedex you a Peet's care package with presspot (hey, it foams milk like a pro, and then makes yummy coffee).

    I hope, as you know from our other conversations, that things get better extremely soon. I'm rooting for you from here. Hang in there.

    2208 days ago
    Oh dear Bren...sigh! How can such a huge pile of cr@p fall onto the loveliest lap in all the land???? I'm trying to imagine the noxious odour created by the sprouts...nope, can't quite imagine, but poor Randy...hehe, gotta love 'em...waving the door to let the funk escape!!! And what about the Toy Story band-aids and the sweets...awww, he's a doll!

    Okay, so here's my two (I'm totally not a medical professional) cents...prednisone causes swelling....lots and lots of swelling....is this not a concern? I'm worried that this is going to contribute to the hand issue and create more swelling and more lesions, and if I'm not mistaken healing on this med is more difficult...again, unsolicited and totally not medical professional wisdom!!!! I am giving this bit of info from personal experience.

    You know I love you to bits...mmm, that just made me think of bits and bites....I digress....ummm, where was I....oh yes, love you bunches and bunches and as always I'm sending cool breezes and hugs to you!!!

    Be well, my friend xxx

    2208 days ago
  • NUMD97
    This one I didn't see coming. Who could anticipate that you would respond to the medication, only to be told that you could not continue in the study? I am totally perplexed by that. OK, this is not helping.

    Then I guess the next best thing is to hope for a speedy and satisfactory conclusion to the trial, so that the FDA can approve of its treatment, and your CA doctors allow for you to continue with the Rx's in the private sector.

    Bren, I'll add my own "I'm so sorry" along with all your other Spark fans. (The saving grace, perhaps, is that you went into this with very little expectations, unlike the rest of us, perhaps.) I wish there were something more that we could do for you. If you need, you know where and how to reach me.


    2208 days ago

    Comment edited on: 3/1/2012 12:53:29 AM
  • CANNIE50
    I absolutely hate the phrase "if you don't have your health, you have nothing". Clearly, that is just not true. I am not surprised that the director cried after delivering bad news to you. I hope there is some comfort in feeling really seen and heard by doctors, in knowing there is compassion. I am thinking about you, as I often do (and I am not alone in that), and I am praying you receive some sort of relief, somehow, soon. oxoxoxoxoxoxox
    2208 days ago
    I'm so sorry you are going through all this. You do not deserve it and I was hoping for some good answers for you. I have a perspective on the "you have your health" crowd. In fact, I said it at thanksgiving....

    What if you don't have our health? We still have a lot to be thankful for...good friends, loving family, a home, pets...these are things we can appreciate even if we are sick. I was thinking of kd at the time but it applies here. The things we do have help us get through when our health fails us.

    I'm here for you, Bren. And I hope you can get home soon. You are beautiful, even with your wonky eyebrows and funky hair...lol. give the hubs a hug for me, he sure sounds like a good one!!!!!
    2208 days ago
    I agree, that's a craptastic deal. I'm so sorry you have to go through this. You have a right to say crap and make stinky brussel sprouts anytime you darn well please, even if I was exposed to the smell!
    2209 days ago
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    2209 days ago
  • LGAR519
    I don't really know what to say. I'm so sorry that you go through all this. You are an exceptional person and I wish they would have kept you on that drug. I pray that one day they will find a cure.
    2209 days ago
    Oh, I'm speechless. I wish I could take away some of the pain for you. emoticon

    It's good to have the support of a hunky hubby (those Swedish Fish were swimming with love!!)! Toy Story Band-Aids - sweet!

    I hope you'll be able to get back home soon. Being away from home can be rough and stress-inducing on its own. No soft furry babies around for comfort and to stroke. Oh wait... maybe the hubs can help out there? hehe, that just sounds dirty; I mean PET!

    Plus, your hotel room neighbors are probably ready to boot ya outta of there. Microwave brussel sprouts? I think I just gagged.

    2209 days ago
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