As a few of you have pointed out, it's been a while since I've sent a health update, so I thought I'd let you know where things stand with my dinosaur disease:
First, what's been going on for the past few months: Basically, not a lot of change. I've tried a few different more powerful NSAID medications and not had much luck with finding anything that makes a significant difference in my pain level. On one medication I noticed my hips and legs getting significantly worse, so at least I know that the others were helping somewhat. It's hard to judge, since pain levels are ultimately pretty subjective, but in some ways, I think I've actually been feeling worse. I'd say my back pain has been about the same, but my hips and legs are becoming more of an issue, and now I have on-and-off heel pain, which is a new challenge. Fortunately, I haven't had any stomach issues at all (they're common with long-term NSAID use), which I am very grateful for.
Other good news: I got an elliptical machine for Christmas and have been exercising almost every day since then. Staying active is really important for my joints, and I do notice a difference when I exercise, especially on days when I'm particularly achy and really don't want to move. I'm more active now than I've been for years! So, that's one big positive that's come out of this whole thing.
The latest: So, I have a fun new problem to deal with. Over this past weekend, I started having some pain, redness, and blurred vision in my right eye. It continued through today, so I went to an eye doctor this morning, who diagnosed me with "fairly severe" iritis (inflammation of the iris). This is fairly common among people with ankylosing spondylitis (ironically, I listed this symtom on the "things that I'm grateful I don't have to deal with" section of my first email). Basically, it's just another problem of systemic inflammation attacking a different part of my body. About a third of people with AS will get iritis at least once, and for many people it can become a chronic problem. Looks like I'm in the lucky third. :) You have to be very careful with iritis because it can lead to permanent vision damage pretty quickly. I am now putting in eye drops every hour that dilate my pupil to prevent damage, as well as steroid drops to reduce the inflammation. As long as this helps, I'll just go back to the eye doctor on Friday to make sure everything is ok and see how much longer I need to use the steroid drops. I also have refills of the prescription available, so if this becomes a chronic issue, I'll be able to start steroid drops at the first sign of a problem.
The positives:
- While it was moderately painful for a while, the pain was already less by this morning, and it's really only a mild ache now. Sometimes iritis can be very very painful for people, and I'm grateful this was not the case for me.
- I knew that this could be serious, so I didn't put off going to the doctor. I'm glad I had my AS diagnosis already, or I might have brushed it off for a few more days and it could have been much worse.
- My eye is actually not very red at all, which I'm grateful for. The pictures of iritis are often really terrible looking, and I'm glad I don't look like a zombie or anything (well, except for that my pupils are currently two different sizes, which looks a little creepy).
The downside:
- The eye doctor said that, because of the inflammation, my iris had become stuck to my lens. It's possible that I will have some permanent damage to my eye, even after the inflammation clears up. He said it will very likely improve from where it is now, but I may have slightly blurred vision in my right eye from now on. It's also possible that it will be fine within a few weeks. We'll just have to wait and see.
- This is not a good sign for the overall progress of my disease. Iritis is usually associated with more severe cases of AS, because it means that I'm having more wide-spread inflammation issues, beyond my joints. While pain and fatigue levels seem a little hard to pinpoint, this a more clear sign that inflammation really is progressing and spreading.
Also, I can't decide whether to put this point in the category of "positives" or "downsides," but this symptom really confirms the AS diagnosis even more. So, any doubt that I was holding onto about this diagnosis is pretty much erased now. It's probably a good thing to just accept it and let go of any lingering thoughts (or hopes) that maybe the doctor got it wrong. This gives me greater clarity moving forward.
I have an appointment with my rheumatologist next week, and we'll be talking about what to do next. I'm fairly sure that he's going to recommend starting an TNF-blocker of some kind. He actually recommended that to me last time, but I still wanted to try other less-serious medication options first. Until this eye thing, I was still thinking I wanted to try some other things (different NSAIDS, diet changes, etc) and hope to avoid
biologics. Frankly, they scare me. Fortunately, I don't really mind needles, so if I have to do infusion-therapy or give myself injections, I can handle that. But I am very wary of the side effects and risks and really want to discern whether this is the right choice for me. However, this latest stuff is pushing me more towards considering this. I want to be careful about serious drugs but also responsible about protecting my body over the long term (and this book-lover takes vision loss really seriously!). Please pray for Mike and I as we discern this decision.
I have been doing pretty well in the last few months, feeling like I was getting a handle on the emotional part of this, but this new issue (along with the heel pain starting up in the past few weeks) has kind of thrown me for a loop. I'm feeling pretty anxious and emotional about the whole thing again. So, I would ask that you please pray for me, for the peace and strength to let go of fear and anxiety. Please also pray for Mike. He has been so amazing throughout this whole thing, and I am so blessed to have him by my side, but he's carrying a lot of the burden in our family right now, and I know he could use some more grace to support him.
Thank you to everyone who has been praying for me and asking me how I'm doing. I continue to make an effort not to spend a lot of time whining and complaining, so I rarely bring up my health, but it's an ever-present reality for me right now. As much as I'm trying to keep my focus outward, on others, this does take up a lot of my thoughts and emotional energy these days. So, I appreciate those of you who have asked and really listened. Please ramp up the prayers again if you can, at least for the next few weeks as I hopefully get this eye thing under control and discern our next step in treatment. I'll keep you posted.
I love you all, and I thank you so much for all your support. I feel truly blessed to have so many wonderful friends and family supporting me.
Also - sunshine makes every day better. I thank God for that. :)
