Hello all,
It's been a while since I sent an update, so I wanted to let you know what's been going on since I wrote last. But first, I just want to say thank you. I'm realizing over and over how blessed I am. Thank you to everyone for all of your love - Whether you sent a card, wrote an email to check on me, gave me a big hug, made dinner for our family, or listened to me go on and on about all of this. Thank you especially to everyone who has prayed for me (and had their kids pray for me!) - I truly appreciate it. Most of all, I am grateful for my wonderful, amazing, patient husband who is always always there for me, even when I'm a bit irrational. I am truly blessed.
So, medically, here's the latest: I started taking the new NSAID, piroxicam, last week. This is supposed to be stronger than the naproxen and also gentler on the stomach for some. So, now we're in the "wait and see how it goes" phase with that. It's hard to tell whether it's had an effect on my pain level. It's certainly not done anything dramatic (I probably should stop hoping for dramatic changes, but I can't help it!), but it's hard to know if there's been any overall improvement, since my pain level goes up and down quite a lot day to day. (This is typical with AS - you never know what your pain level is going to be on a given day, or what joint might "flare" next.) I had several good days when I first started taking the medicine, so I felt rather hopeful, but I've had several bad days too since then, so it's hard to know. It is nice to only have to take it once a day, since my stomach is not always happy in the morning and taking the naproxen then was harder. The most common problem with NSAIDs is the effect they can have on your stomach, especially over time, and I have had a few problems with stomach issues with even my low dose of naproxen in the past. So, it's something I'm definitely keeping an eye on, because of the risk of ulcers and stomach bleeds. Of course, when you're worried about stomach issues, it makes you paranoid, which makes your stomach hurt, so I'm trying to not focus on it too much. :) Anyway, I haven't noticed any major change in my pain level or any obvious side effects at this point, so we'll just wait and see. There are a bunch of other NSAIDs that we could possibly try if this doesn't work well. (I've been spending time on the Spondylitis Association forums, and I've learned a lot there from other people's experiences. Many tried 4, 5, 6 or more NSAIDS before finding one that helped their pain without giving problematic side effects, and it seems to be different for everyone which works best.)
I also had my first physical therapy appointment today, which was interesting. It's nice to be working from an actual diagnosis now, whereas the previous times I tried physical therapy, we didn't have any idea why I was in so much pain. It was nice not to just be told that I need to strengthen my abs to support my back. :) (I should probably still strengthen my abs anyway, but that's not the main issue here.) And a physical therapist certainly approaches pain very differently - It's nice to have another perspective. She asked a lot of very specific questions about my pain, and looked at my spine, mobility, and flexibility very closely. She measured my flexibility and range of motion for a bunch of different muscles and joints. I do have good range of motion in my spine, which is a very good thing (losing ROM is a step in the wrong direction for AS). A lot of the muscles in my legs, hips, and back were very restricted, which she said could likely be a result of the way I have been reacting to the pain. So, we'll work on some of that. She also gave me a lot of suggestions on how I could sit and lie down that would be less painful. She was very sensitive to what types of movements and stretches increased the pain, whereas previous PTs haven't payed as much attention to that. I have some exercises to do daily, as well as laying flat on my stomach for periods of time (it's supposed to be important to do this regularly so that if fusion in the spine occurs, you'll at least be fused straight!) She also thinks bursitis in my hips is likely, which is something my rheumatologist also mentioned, and is common (in various places in the body) with AS. But the hip pain is definitely more manageable, so I'm not too concerned about that right now. Anyway, I'll be in PT once a week for a while, and we'll see how it goes.
Other than that, I've been doing lots and lots of research about AS, as well as spending time on the AS support boards online, which has been very helpful. I'm understanding more and more about this disease, and while not all the news is good, it's still good to know and understand more. And, while it's sad to hear about all these other people suffering, it's really nice to know that I'm not alone. And that I'm not crazy. For the longest time, I seriously thought I might just be a huge hypochondriac, because some other random part of me would just start hurting one day (heels? really? why in the world would my heels hurt?). Turns out a lot of those random places are totally not random and are pretty common places for joint pain or enthesitis (inflammation of the sites where ligament or tendon inserts into bone). Also, person after person mentioned one of their most prominent symptoms as a "flu-like feeling" or something of the sort. That general "I just really don't feel good" feeling on a day to day basis can be an affect of your body constantly fighting inflammation, which is something I've definitely struggled with. So, one big bonus of having a diagnosis - I don't feel like a nut case anymore! :)
I'm also getting a better sense of relative risks of various things. (Like heart problems only occur in somewhere between 2 to 10% of AS folks, iritis in about 25%, and some fusion in about 2/3 of people (although probably less with the newer drugs we have now). Long-term use of NSAIDs have an annual rate of serious stomach complications of 1-4%. Stuff like that.) It's good to keep in perspective. Most of this stuff is much more likely not to happen than to happen.
Anyway, it's been a long week couple of weeks, but I'm doing ok. There's a lot to process, and I feel like I'm still in the middle of making the mental shift this whole thing requires. But I'm definitely getting there. Emotionally, it's been a bit of a roller coaster - Sometimes I'm feeling really optimistic and at peace with the whole thing, sometimes I'm just sad or angry or afraid. But I think that's leveling off a bit and I'm able to focus more on the rest of my awesome life, without thinking about this all the time. (I'm ready to be done with this sucking so much time, thought, money, and energy, but I think I also need to just accept that it will be doing that, to some extent, for most of my life.) I'm also a bit of a worrier by nature, so I'm trying to stay focused on where I am today, and not worry about the future stuff.
Last week, when I was not feeling great about all of this, I went to a Taize prayer service, and I felt like every song was directed right at me. (Most of you know that I cry easily as it is, but this was just ridiculous.) Even when I'm not paying any attention to Him, God has ways of getting through to me:
In the Lord I'll be ever thankful
In the Lord I will rejoice
Look to God, do not be afraid
Lift up your voices, the Lord is near
(The whole "Do not be afraid" thing God is saying all the time in the Bible has never meant a lot to me. Until now.)
Anyway, that's the latest. I'm glad that this month we focus a lot on giving thanks, because it's a wonderful reminder to me. I have so so much to be thankful for! Most of all, the Lord is near.
With love,
