Thursday, October 14, 2010

A Hopeful Day Ahead & A Poem For My Friends

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 

and they're all here; there's so much living to do.



  1. I will be sending healing thoughts all day Maya. Thanks again for the beautiful poem.

  2. as i said last night, "i love the internet."

    seriously. because i've met amazing people like you. i'll be thinking of you at 4:00. xoxo

    p.s. i think i overdid it on the clapping last night. ;)

  3. I will be thinking of you Maya, like you I have AS, I have been off Enbrel for a year due other serious illness, then major surgery in July. All I have had is basic painkillers. Seeing my back doc next month and hope I can get back on it then. I so understand what you are going through, as when I started Enbrel it was such a major event having something that really helped (cant take NSAIDS etc) Good luck huge gentle **hug** Jackie

  4. Cathy: Thanks so much, I already feel the healing thoughts I think :) I'll write soon <3

    Jodi: You were such a good stand-in clapper. I agree about the internet when you put it like that :) I'm so happy we're friends, last night was such a blast (thank you again) <3

    Jackie: Although I wish you didn't have to understood what I'm describing firsthand, it's always comforting to know I'm not alone in this fight. I hope you'll stay in touch and I'm sending you a big, gentle hug back...

  5. please remember that you are not alone and there is hope...
    thanks for sharing the lovely poem. i appreciate you, cherish you, and count you amongst my greatest blessings. xoxo

  6. Betsy: Your messages have meant the world to me during this past week. As soon as I'm up to it, I'll call you. I want to hear how you're doing too <3

  7. Reading this a few days late to offer any words of encouragement, but I hope the Orencia Infusion went well. One day you will find the one that will alleviate most of your pain. That is my wish for you.

  8. Thank you so much Vic. Your words and your wish mean more than you know right now...

  9. I hope all went well and your new medicines work for you.
    I know how frustrating it can be. My own Dr switched me Enbrel to Humira - now I can hardly walk. I am tired of "giving it time". I see him in a few days to figure something out.
    Your blog is an inspiration to me. When I think no one understands I can always look here and know I am not alone. Thank you for everything.

  10. Katrina - Thank you so much for your comment and I was so sad to hear you're struggling right now too. Please feel free to reach out to me whenever you might need ( Although it's really hard right now, we both need to remember the nature of these diseases is cyclical. Know that there will be better day and that readers like you make it all worthwhile for me.