Sunday, September 12, 2010

Remicade Update & Thanks :)

Many people have been asking how my first Remicade infusion went yesterday and that means a lot. It went as well as a 4 hour IV infusion in New Jersey could have gone! ;) 

It being September 11th yesterday, we drove under this flag
on the George Washington Bridge (it was much bigger
and more striking than it looks). It gave me courage.

Aside from the 2 hour trek to Jersey - some silly insurance hoop - I had the company of my mama as usual (
thanks again, mom!), the center was comfortable, and the nurse couldn't have been nicer. He got the IV in on one stick (a rare event for me) and, in stead of feeling anxious, I mostly just felt hopeful. As my friend Cathy updates us on her success with Enbrel , I've found myself growing increasingly hopeful about the quality of life Remicade might afford me. This may be over the top and cheesy, but it felt like there were possibilities dripping into my arm instead of just medication. As I watched the bag emptying above my head, I imagined the city blocks I might be able travel, the floors I'll sit on without becoming stiff, the ball games I'd play with my dogs, the long walks  through Central Park, the energy I'll have for family, friends and of course for John. I sensed potential yesterday and, while I'm trying not to build my hopes too high, I've got to believe in my doctor. I've got to believe in my body.

Maybe it's just the dork in me,
but this made me laugh
I also met a great girl named Julie who was sitting across from me receiving the same medication. She's 19, a sophomore at Penn State, an avid volunteer, and living with Crohns Disease (an inflammatory bowel disease). I really enjoyed getting to know her story. We swapped e-mails and I'm hoping she'll be appearing on this blog as a spotlight soon. Ordinarily, my infusion should only take about two and a half hours, but I did have a slight allergic reaction to the first dose (a few hives and a numb, tingly mouth), so I got some allergy medication and an extra dose of steroids. I'm told this can happen the first time, and I'm feeling good today - those steroids are incredible, albeit not something I can stay on. I'm also told the Remicade could take up to three months to do it's thing, so this will be an exercise in patience and in faith.

Thanks for reading and for caring about my story. You all give me great strength.



  1. Every Thursday when I inject Enbrel into my leg, I think of healing thoughts. I think it really helps.

    I am so glad you are having some relief with the prednisone and look forward to hearing more about all of the wonderful things you are doing as your body continues to feel better with Remicade. I just know it is going to work. :)

  2. i think this may just be your miracle...but remember there are endless treatment and lifestyle possibilities...some yet to be developed...we always have hope! i love you!

  3. Cathy: I think you're onto something with the healing thoughts (thank you for helping me to see that). I will definitely keep sharing how the medicine works and it means the world that I have people like you rooting for me all the way <3

    Betsy: I love you too and thank you for that reminder. I can't put all my eggs in one basket - there are many baskets to go. Thank you for your friendship and amazing support in this journey

  4. Hope the Remicade works well for you. I was doing Orencia infusions for a while and it was about 50/50 on hitting the vein the first time with me. The flag looks huge, I can't believe it's been 9 years already.

  5. Tharr: Thanks so much for the well-wishes. I hope it works too :) How did you do on the Orencia? That was the other option I was given, but I went with the Remicade. The flag really was tremendous and awe-inspiring...

  6. Orencia seemed like it was going to work for me at first. Then about 3 months into it, I noticed a pattern developing. I felt great right after an infusion for 2 weeks, then the following 2 weeks leading up to the next infusion, I was hurting. It never changed and after 7 months of it, I changed to Humira. I wished the Orencia would have worked for me, it was nice just doing an hour long infusion once a month. Now I'm back to giving myself injections again.

  7. oh, maya, i am so glad to hear that it was a positive experience! here's to better days ahead! xo

  8. It was great reading about your experience,and of your hopes of things you can do in the future, but I want to offer one piece of advice. Try not to sit on too many floors, as getting up may still be a bit of an exercise. Other than that, I to hope that you get to do all that you mentioned and more.

    Best of luck to you Maya

  9. Hi Maya,
    Your site is so real, thank you for that. My daughter 20 was diagnosed a year ago. Would love to have you email her, she needs help as does every newly diagnosed young person. This disease sucks and I am sorry that you have to deal with it. You are a beautiful person and thanks for helping us all.

  10. Tharr: Thank you for sharing your experiences and I'll pray that the Humira keeps working for you. I'm wishing you lots of good days ahead

    Vic: Thanks so much for your words and the floor advice ;) I think you're right there. Best of luck to you and I hope you continue to read along

    Marcia: I would be honored to write to your daughter - please send her information to my e-mail if you want:
    Your words mean more than you know and keep me strong in my own fight against this disease. Thank you so much for reaching out.

  11. Maya,
    Thanks, we will be in touch. Even though it is tough, keep going strong as we all look forward to what you are going to write next.
    My daughter really needs someone to talk to and advise and encouragement. We live in Oregon but would like the chance to talk more with you and see the east coast. Maybe we can plan a trip and treat you to a lovely dinner or something fun in exchange for your knowledge. :o)