Thursday, October 21, 2010

Update & Thanks For Your Patience!

Hello my wonderful readers,

I'm sorry for being so absent! It's been a struggle just getting through the days lately and so blogging has taken a bit of a backseat. Thanks so much to everyone (family, friends, readers, and perfect strangers) who have been sending me love and prayers -especially this past week. Each word and gesture has stuck with me and is slowly, but surely getting me through.  

As I wrote last time, I had my first Orencia infusion  last week. As I stepped into the hospital that day, my anxiety was through the roof. Physically, these past few months have been the hardest of my life. I've lived with pain I never knew before and swallowed tremendous disappointment when Remicade didn't work. I've put my body and health into the hands of  specialists I've never had to see before. I've toughed out a painful allergic reaction for a month and dealt with the unpleasant, appearance-altering side effects of steroids (the only medication keeping my disease at bay). I've learned a lot about patience and faith and allowed myself to be taken care of by people who love me. In fact, I've had no choice. I  didn't know just how much I had riding on Orencia, but I nearly lost it when the IV started dripping. There were so many thoughts racing through my mind: Would  I have another allergic reaction? Would they be able to complete the infusion? Could everything be delayed even more? If my body accepted it in, would this be the drug to get me back on track? Could this be my answer? 

The truth is, I want my health back like I've never wanted anything. I want to exercise and enjoy my body. I want to sleep normally, breathe easy, and be held without hurting. I want to sing and dance and travel to see the people I love.  I'm trying not to see Orencia as my only option, but that's much easier said than done. This week has also been pivotal because I started seeing a pain doctor. Although he made some huge mistakes and put me on doses that were FAR too high for my body (messing with my emotions and  causing me to nearly pass out in classes), he did do one very positive thing. He confirmed that I'm also dealing with Fibromylagia - something that's been speculated since I was a kid. Once the diagnosis of Spondylitis was made at age 15, this idea became secondary to my rheumatologst at the time and was just kind of dropped. However, Fibromyalgia is a disease that is also characterized by widespread muscle, joint, tendon and ligament pain and has a high correlation with other auto-immune disorders.

According to the MayoClinic website, "Researchers believe repeated nerve stimulation causes the brains of people with Fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters)." In short, my body has had it! It's been explained to me that our systems can only handle so many prolonged, intense pain messages before they go into "overdrive." This explains the physical distress I've been in, particularly in the last few weeks.   Subsequently, both my rheumatologist and I are not entirely convinced that I will always have Fibromyalgia. It's possible that once the Orencia kicks in (knocking on all things wood in my apartment), the nerves will stop over-firing and I'll return to a much more normal state of "Maya-ness." 

Here's some great news! Because of the Fibro diagnosis, they've started me on Lyrica - the approved drug for Fibromyalgia. While I don't want to get my hopes too high, this has been my only reprieve from my pain in months!  Since starting it for the first time this past Monday, I've gone from a consistent "7" or "8" (where all I could think about was my pain) to a comfortable "2" or "3." I nearly forgot what this felt like. I've slept two full nights which hasn't happened since the beginning of the summer, walked 10 blocks yesterday when I could barely stand last week, and am on no other pain medication (when I was living pain pill to pain pill last week). We're still working out the dosage of Lyrica because it makes me dizzy, forgetful and sleepy, but this could be the start of something very good...
And could it be I'll feel even better if and when Orencia does its thing? I'm filled with a renewed hope.

Sheesh! That was a lot of medical information to throw at you, huh? I think I'll end here. For now,  know that I appreciate your patience and that I'm working hard to get back to a healthy, happy, consistently blogging me. I'm wishing you all many pain-free days and thanks for being along for the ride.


PS: I know many people who read this blog cope with Fibromyalgia. If you want to reach out to me about your experiences with this disease and/or the treatment for it, I'd be very grateful.


  1. Thinking you! Hooray for sleep and less pain :-)

  2. So glad to hear the Lyrica has knocked your pain down so much!!! Thinking of you girl!

  3. Hi! I'm a new follower of yours. I have fibro and spondi as well. I've had bad reactions with lyrica and it made me gain so much weight(more then prednisone ever did) and seizure type stuff. But I really hope it works for you- i know many people who get relief from it!

  4. I think the hardest part of what we go through are failed treatment options and then, having to start over. Sorry about the allergic reaction with the Remicade. I know what you mean about wanting your health back and wanting to exercise and enjoy your body. I know exactly what you mean about wanting to “sleep normally, breathe easy, and be held without hurting.” I miss my kids’ hugs and they know that I am hurting when I asked not to be touched.

    Sorry about fibromyalgia diagnosis – as a fellow sufferer, I know that it means your primary condition much worse. I really hope you go back to being you soon and I am praying for you. A warning about Lyrica – weight gain and a lot of it so if you see the weight gain (I gained 20 pounds before I stopped it), I would suggest you talk to your doctor about another option. The side effects will eventually pass but it does work pretty fast.

  5. Hi I am a new follower, having AS for nearly 40 years now. Fingers crossed that this new drug works for you xx

  6. Katgirl: Thanks so much for understanding how big little things like sleep can be ;)

    Britta: I feel your thoughts and so appreciate them! I'm wishing you pain-free days too, always.

    Wander'er: It's so nice to "meet you" and to know you're following along. I'm sorry to hear that you also suffer from these two diseases and I really appreciate you input about the meds. The side effects really do worry me, but so does the pain. It's such a balancing act, huh?

    Lana: It's comforting to know you truly understand how these past few months have been, but I'm sorry you've had to live through this stuff too. I've been meaning to get in touch with you because I know you live with Fibromyalgia. I'd love to pick your brain a little more - do you have an -email address I could write to?

    Feline9: I'm so glad to have you as a follower and wow - 40 years! That's inspiring to me and I'm sure I have a lot to learn from you. Thanks for your well wishes and I really hope you'll keep reading :)

  7. My email is I am also at wordpress now.

  8. I can definitely relate to long absences from blogging due to daily struggles.

    That's great that the Lyrica is helping you sleep a little better.

  9. Thanks for all the medical information. If it was overwhelming to read, I cannot imagine how overwhelming it must be to experience.

  10. There are new and improved medications for the disease.Not that they are miraculous drugs but they definitely help.It is good that you have an online support system here which also helps a lot.

  11. You are on the right track of medication with correctly diagnosed disease.I am sure the rest of your journey is going to be aided medically...just pull your socks up and be brave.