Back to Remicade

On Friday I'll be going back down to Baltimore to get an MRI and receive my second, first Remicade infusion! I am quite excited about the latter. The MRI doesn't bother me much either, but I really don't think it is necessary. Last year around this time I had an MRI to look for an abscess and the results showed everything was normal. Well, lo and behold a couple of weeks later I was having surgery to drain the very abscess they didn't detect through the MRI. So combined with the fact that this time around I am a lot healthier and not showing any symptoms of an abscess, I am really hesitant to get it done. But I am complying anyway because my colonoscopy showed a fistula and I'd hate to have something really small causing problems down there, even if I don't necessarily feel them. I have come to understand that with this disease, things can go from normal to horrible in a very short amount of time.

This time around they are going to blast me with the maximum Remicade dosage for my body weight. Rather than induct the medicine in my body at slower intervals, such as one week, two weeks, and then four weeks, they are just going to give me the maximum for my first infusion and then continue monthly (if I've understood correctly; it was explained after my colonoscopy when I wasn't entirely 'with it'). This is certainly not the norm for Remicade but it is a process by which my doctor feels we will be able to tell for certainty if my body will regain responsiveness in combination with the 40 MG of Prednisone I am on. The thought of feeling what I felt after my first stint with Remicade again makes me beyond happy. I know the signs of improvement to look for but I am definitely not getting my hopes up too high because there is a reason my body stopped responding last time. I can only hope that this year and half off of the medicine has somehow changed my body's responsiveness. But just knowing how it made me feel in the past is a hopefulness that is good. I don't know how to explain it but I would rather try Remicade and fail and it than try something new, like Cimzia, and have that fail. I think I will be able to accept it a little bit more knowing that I had a great run with Remicade and it gave me the opportunity to live the best years of my life. And if it can't bring me that sort of health this time around, I am okay with it, because at one point it was so life-changing.

Otherwise, I've been back on this dose of steroids for a few weeks now and I feel great. When I say 'great', I mean, I feel as good as I could possibly feel while still being very symptomatic. I am at least able to go out with my friends comfortably and indulge in food and drinks and not be extremely paranoid that something is going to go horribly wrong. I still get anxiety from time to time that I am not going to be able to cope if something happens. But the important thing is I have that confidence to actually GO OUT and do things. Regardless of what happens, good or bad, when I'm actually out, I am typically able to deal with it in a way that no one around me would even know anything is going wrong.

And wow, I just feel very lucky to have the most supportive people in my life. My friends and family just make this so much easier to deal with. They don't treat me any differently but they also understand that sometimes I have an 'off' day. Lately the off days are fewer but when they do come I know I'm allowed to bitch and moan about this shitty disease and that those around me will be there to crack a joke or two and bring me back to the ground.

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