Back in the Saddle…Again?

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!


One response »

  1. sounds like something different. In a year or so the doctor will probably be able to deduct that you have “fill in condition/disease here” with approximately “fill in percentage here” accuracy. In the meantime the same treatment that you are getting for the crohn’s will probably help with whatever else you’ve got. I’ve got my money on R.A. as long as I am reading the crystal ball tonight (and that’s all I’m really doing, right?) sh*-ty disease that makes you ache and tired and old feeling. but like I was saying the same crappy class of auto immune problems and ??treatment??. on the plus side, if they can get the meds right you can feel pretty normal.

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