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.