The sun is coming up on what feels like a very big day for me. If you've been reading along, you know I've been on a serious pain roller coaster since July when my Humira injections stopped working. To put it bluntly, I've just about reached the end of my rope. Each vertebra is on fire, each step hurts and every breath is an aching chore. But today I'll be getting my first IV Orencia infusion - something I've been looking forward to for weeks. After trying Remicade last month and suffering a severe, allergic reaction, I couldn't add anything to my system until I was back to normal. So, although I've been getting by on a high dose of daily steroids and pain medication, the raw disease is breaking through and boy, do I see what I'm up against.
I'm trying to remain cautiously optimistic about Orencia. After all, my body could reject this too. Still, I have hope that it could be my answer and I'm going into the hospital with that belief at the forefront of my mind...combat-style. Both of my parents will be joining me for the infusion today (I told you they're the best and with me every step of the way). I'm also going to put a little request in for all the good vibes, prayers, and love that you can send my way today. I know it will help!
It's not easy to write about the extent of my pain (mainly because I know how sad it makes my family), but I started this blog openly and honestly and refuse to stop when it gets rough. On top of that, I know the people who read along genuinely care about my well-being. While I've been told that many of you benefit from my writing, it's you who give me strength. Because of Loving With Chronic Illness, my knowledge-base, my hope, and my support system have all grown exponentially - across generations and continents. So many of you have cared enough to really ask how I'm feeling and then genuinely seek updates. You can't know what that means.
Four special ladies in particular have come to me through this blog and I woke up with this poem in my head for them the other day...
Living To Do
My veins are cold and I'm sitting with my tuna and juice
alone for three hours more. And then again
you're all here no matter where you are
since hurt binds us.
The IV drips and all I see is Cathy's blue bike,
her smile, and her good knees working. All I see
is Jodi's lens through which the whole city seems to breathe.
She's snapping shots of legs and benches
and the medicine's halfway in me now, but I know
Kate's halfway around the earth waking. She's got tea on the stove
and kangaroos in the yard and a mind full of love for the world.
She'll see it all soon enough—pain or no pain—
The bag's running low now and I know Betsy's boys
are loving something new today (Yoda or bugs or maybe even girls)
and their mama's pain is nothing like her love for them
and everything new in their eyes. The last drop