Oh boy. Where do I begin… my flare that I discussed in my last post kept getting worse and worse. I had a friend’s wedding to go to in another state, and I just didn’t know what I’d do if I couldn’t get better before then. I luckily still didn’t have GI symptoms, but my joints and muscles were so stiff and painful that I felt awful all the time. Taking Tylenol every 4 hours took some of the edge off, but by the end of the day the dull pain turned into a shooting pain, and I could barely do even the most basic things like opening a door or picking up my daughter…even walking was a challenge. I’m sure from far away I looked like an old lady. Plus, I was so tired I’d just fall asleep if I sat still too long.
I spoke with Dr. D’s staff, who scheduled me for Remicade the day before my trip. But when I arrived at the hospital, we found out they’d scheduled for the wrong day. So that was it. Dr. D did what he could to get me in to a treatment, but they were all booked up. The best he could do was a prescription for a stronger pain medication and a promise I’d get Remicade the day I returned.
So, off we went to the wedding, the first trip we’ve had without our daughter. We had fun, but it was definitely a modified version of the vacation we’d hoped for. We danced at the wedding, but not much. We went to a baseball game, but I could only handle sitting in the stands for half the game. And instead of taking the long walks we love to take, we split up so he could walk and I could rest (and have a pedicure!) We made the most of it, and had a wonderful time. But I hated having to explain to people why I was hobbling, and I really hated that when we got home I was in so much pain that I couldn’t carry our daughter around the house like she wanted me to. Well, I did it anyway. That night, I woke up crying. My arms hurt so bad that I couldn’t move. I had to wake up my husband and have him rub my arms so that I could fall back asleep. I seemed to wake every hour in pain. It was the worst yet.
So the next morning, Tuesday, I went to Remicade. By the time I left, I was feeling better. And today was the first day I haven’t had to take any Tylenol at all. (I had continued with the Tylenol, which worked, rather than the Percocets, which didn’t.) I feel so happy, so normal. I am able to knit. I am able to pick up my daughter. I thought at first that she felt lighter, but no, I just don’t have the pain anymore. It is truly bliss.
Dr. D thinks something’s up and that this isn’t just Crohn’s. I have an appointment with the rheumatologist next week, and had a blood test also – once both are done we’ll be talking about next steps. It’s possible that I could have Remicade every 4 weeks, it’s possible I’ll go back to 8 weeks with a double dose each time, it’s possible it’s time for another medication. Whatever it is, I feel good about being proactive but just wish I had a solution already. All of this is scary and painful, and I just want it to be fixed. I want to feel normal again!