Friday, August 27, 2010

A Painful Truth & Some Fresh Hope

I've tried to spare you all the ambiguous details this summer until I had something concrete to say. But, after coming back from Italy (an eight-day, pain-free gift), I've taken a progressive turn for the worst. My pain is everywhere - in every joint, muscle, tendon and ligament that one could name. It became so painful between my ribs, for instance, that I've been struggling to take deep breaths or even get enough oxygen this summer. Earlier this month, I went through an unpleasant round of tests to rule out serious lung and heart problems, but as usual it all came back to the inflammation.

Giving a toast
 at Josh & Erica's wedding
The "thick and thin" are both inevitable when you're living with Spondylitis, so if I stopped writing now when it's gotten really hard, I wouldn't be doing this blog justice.  So the truth? This summer I've felt scared. Days have passed, school is quickly coming down the pike, and I'm hurting more than I ever thought I could hurt.  I've started to feel cheated - an emotion I've always fought so hard against. I hate living my life with the backdrop of pain. For example, I resent that when I reminisce about my brother's wedding, I don't just remember the happiness of the day. I also recall the crippling rib pain and see it in the photos. I hate that I've had to cancel so many plans this summer and miss out on time with my friends. I hate that I can't sing, dance or even laugh without pain. Most of all, I hate that my optimism and zest for the future has felt distant for months.

I've had an outpouring of love, letters, visits and care packages from the wonderful people in my life and, despite everything, I've still been able to make some great memories this summer. Obviously it hasn't all been bad, but no matter where I go now, this pain goes too. That's the difference. There has been no reprieve for months - not even for a moment. I've dramatically increased my pain medication (something I'm not comfortable with) just to be able to walk or breathe. I've had a hard time staying awake and spend most days laying down. This isn't the Maya I want to be.

After seeing my rheumatologist this week, I have hope for the first time all summer. She confirmed that, after 5 years on Humira injections, my body has stopped responding to it. The same thing happened with Enbrel after 4 years of relative success (so far not hopeful, I know). While it's totally scary that this can happen, leaving me with no safety net, there is good news there. I'm not some mystery. My doctor seemed concerned, but she also seemed to understand my body. She had ideas. After more than an hour of discussion with both her and my mom, we've decided I need to start Remicade, a monthly IV infusion. She also started me on prednisone  (a steroid) for the time being to get the inflammation under control (beginning with a big ole' shot in the butt! Good times).

The truth is, I'll do anything to get better and to live the life I want. Needle after needle, 3 hour IV infusions, steroids that can make my face look like a puffy dinner plate...bring them on. As long as I feel better than this, it will be worth it. My greatest hope right now is that the Remicade will be a success, and my greatest fear? Well I'm not letting myself go there...

Thank you all for reading and for your support. It means everything.


  1. It's so hard not to get frustrated when you're getting worse and when treatments suddenly (or even not so suddenly) stop working. I get the same way when I'm feeling worse and I have been feeling worse for awhile; it seems like the rest of my life that stretches out before me will be filled with unrelenting pain. I have been on Remicade before, and the infusion isn't so bad. I'd recommend bringing a book or something to hold your interest; three hours is a long time to sit watching bad TV or doing nothing. If the doctor's office or hospital where you'll be getting your infusion is anything like the ones where I got mine, a blanket or something warm and comfortable probably wouldn't run amiss either.

    Good luck with the Remicade and the prednisone; I hope they work for you for many years to come.

  2. ditto on all of your emotions. my friend's husband has been doing remicade infusions and they have been his miracle. hoping it is also yours...

  3. Nessie, it's wonderful to know that you completely understand and thank you so much for the tips. A blanket is a great idea because we all know that doctor's offices are chronically cold. I am so happy to have you as a reader - you're a gem ;)

    Betsy - Thanks for understanding usual. I'm so glad to hear that about your friend's husband - I think that's what put the idea in my head about Remicade. Much love to you <3

  4. Hi Maya,
    I thought I left a message on this post but I think I forgot to save it. Sorry. I have been thinking about you and was glad to read your comment on my blog today that you are feeling some relief. I send daily wishes that Remicade will be the answer you are looking for. Keep smiling. I love seeing the photos of you on your blog smiling. Even if life can't always be pain free, we at least have the choice to keep smiling, right?

  5. Cathy, thanks so very much for thinking about me - it's the same on my end. Our struggle is so similar and I feel I have a lot to learn from you. I get so excited every time I see you wrote a new post! You're right. I will keep smiling and you please do the same...can't take that away from us!