I wish I could say I haven't update in a while because I've been out and about feeling fabulous. Not the case.
I can never bitch about steroids enough. I absolutely hate them. Last time I talked to you all I was tapering down but I think I was in denial about the return of some of my symptoms just because I was so anxious about getting down to a lower dosage. I'd say as soon as I got below 30MG I was feeling much different as far as my Crohn's symptoms. Not to mention the fact that I went from feeling like I was on speed (not that I would know) to only being able to stay awake 6 hours a day. It's scary how fast your body develops a need for them and how hard it is to taper down even at a slow pace.
So I saw my GI this week and based on my symptoms we decided to increase back up to 40MG a day until I see some sort of improvement on Tysabri. I am okay with this just because I've really started to live my life again and it was hard for a couple weeks when I was feeling not so great to not be able to do those little things that make me feel human. I think an important part of recovery is just getting out of the house and being independent. After not having that for so long, I need it.
Last week I got to return to my old stomping grounds in Maryland to see my very best friend, Claire. It was awesome because I used to travel down there at least once a month after graduating college and due to being sick, I hadn't been back in a year and a half! It also helped me realize how many of my symptoms had returned that I was continuing to ignore. When you are driving 3 hours and spending time away from your comfort zone, it's like a slap in the face. Once you don't have your normal routine and crutches to rely on, you take a step back and realize real damn fast what's going on. Sometimes I'll be doing something in the morning to prepare for a day out and I just stop and think to myself that it is extremely fucked up that I live this way. I don't know. Some things are just so second nature to me anymore that would seem really horrible to a normal person.
Anyway, I had a fabulous time hanging out with Claire's family, smoking black and milds, watching reality TV, and drinking gatorade. Yea, it takes a lot to entertain us! That's the wonderful thing about having good friends. The simplest things are fun enough and sometimes I really just need to keep it simple. After seeing Claire, I drove to another town in Maryland to see Jill and I think our whole time was spent walking around a mall. But it was oh so fun!
So I'll be going for my second Tysabri infusion on Wednesday and I'm really hoping I see some improvement after this one. Like I said before, if there's no improvement after infusion #3 then I'll have to stop taking it. I would really just love love love to be able to try the steroid taper again. I'm not looking forward to the effects of it but I just hate knowing I'm taking a medicine that is so darn bad for you.
I shall update again after my infusion and I'll be tweeting live from the infusion suite. My hope is that someone will actually read them and find it helpful. Minute by minute updates people! Get excited!!!