It's been about a month since I wrote you last, so I thought I'd give you all a little update, although there's no big news to report.
I have now done 4 injections of Humira. I'm starting to get more used to the injections now - After my last shot, Mike said "you're getting much braver!" (in exactly the same tone of voice he would use with Benjamin if he was pulling out a splinter). So, I guess that's a good sign. :) I got smarter after the first two shots and now have been doing them right before going to bed at night, which allows me to sleep through the worst of the headache. The headache fades to being pretty mild after the first couple of days, so that's definitely manageable, and I have no other side effects, which is great.
I haven't noticed any improvement yet, but I'm trying to remain hopeful. I had an appointment with my rheumatologist after my third shot, and he said we would wait until 3 months of treatment to determine whether Humira is worth continuing or not. From others with AS that I've talked to online, it seems that there are plenty of people who don't notice a difference for 6 weeks or more, until something suddenly changes after the fifth or sixth shot. So, we shall wait and see.
Unfortunately, while my back, hips, and legs have stayed about the same over the past few months, my feet seem to just keep on getting worse and worse. They're actually my biggest problem right now, more than back or hips or anything else, and they are limiting me in a way I haven't experienced before. I've been doing everything I can to try to heal (heat, ice, stretching, shoe inserts, etc), other than staying off my feet altogether, which is next to impossible with our life and not so great for the rest of my joints anyway. None of that seems to be helping, so I am going to a podiatrist this week, and I'm hoping that he'll be able to help me.
To be honest, I've been struggling a bit in the past month or so. You would think I'd be getting used to this by now, but I'm feeling very frustrated and discouraged by the foot problems, mostly because it really limits what I can do, more than my back ever did. Standing, walking, and driving are all pretty painful at the moment, so there are a lot of times I just have to say No to things now, and I guess I'm still getting used to that. It's still hard for me to judge what I can and can't do on any given day, and I'm not always smart enough to stop before I push it too far and end up paying for it. Anyway, I'm sure I'll get better at that, but right now it's frustrating and disappointing. (And man, the first time I had to crawl up my stairs was a little blow to my ego - the first time I felt truly handicapped. But humility is a virtue I've gotta work on anyway, so I'm just getting a little boost in that direction!) My kids are super sweet and understanding, which I greatly appreciate, but it breaks my heart a little every time I have to tell them that I'm just not able to do something that we had been hoping to do together. And I really really hate not being able to stand during mass anymore! So, those things are hard for me right now. On the upside, Mike is trying to convince me to get a cane, preferably a super cool one with a dragon on the handle or something. This would be a good excuse to learn some kind of cane-swinging martial arts and impress my children. See - silver linings!
Anyway, I know that eventually I will either start feeling better or I'll just get better adjusted to some of my limitations, so I'm just trying to be patient and hopeful through all of this. Some days I am more successful than others. :) For those who have been praying for me, I would appreciate your prayers for some effective treatment for my foot pain, and more importantly, that I will remain hopeful and grateful and generous, on both good days and difficult ones. I am constantly fighting a temptation toward both selfishness and self-pity, and I could use some grace to keep me focused on being joyful and generous, especially when I'm not feeling great. And if you could pray for my husband and my kids, that would also be good. They are amazing and compassionate and forgiving and patient and so comforting to me - but I also know this is hard on them and they could use some extra grace too. Thank you for your prayers!
Well, that's the latest from me. I'll let you know if anything major changes, but feel free to ask if you have questions or just want to know how I'm doing.
I am incredibly grateful to all of you who have been such good friends through all of this. I am truly blessed to have such wonderful people around me. Thank you!
With love,
Sara
