I'm writing you this email to give you an update about my health. I know that in person is always better, but I communicate better in writing and it's easier to explain this once, rather than over and over, so I apologize for doing this all via email. It's long too - So feel free to skim if you don't need all the details. I guess I'm a bit long-winded.
As you know, I have been struggling with back pain and other pain issues for years. It's gotten much worse over the past few years and spread to my legs and hips as well. I've been to my doctor (plus physical therapists, chiropractors, acupuncturists, etc) many different times over the past 8 years or so, without any real diagnosis or improvement. As things have gotten worse, I've felt more and more sure that something must be going on to be making me feel so bad all the time. I went to my doctor in September and resolved that I was going to pursue every avenue I could until someone could figure out what was going on.
The good news is that we've got it figured out at last! I went to a rheumatologist two weeks ago, who asked a lot of questions, examined me, and did a lot of Xrays and bloodwork. Yesterday, I had my follow-up appointment with him, and it turns out I have a pretty clear case of a rheumatological (inflammatory) disease called "Ankylosing Spondylitis" or "AS." You can read about it here: Spondylitis Association. (In the last two days, I think I've read every piece of information anywhere on the internet about this! I'm learning a lot, but I would highly recommend avoiding the sections about possible complications etc - Not helpful at this point!) Basically, it's a form of arthritis that affects the spine and can affect other joints as well as other body systems. This diagnosis comes from my symptoms (back, leg, and hip pain that is worse in the morning or after periods of inactivity, extreme fatigue), along with the presence of the genetic marker HLA-B27, a high count on a blood test for "anti-nuclear antibodies" which are associated with autoimmune disease, and significant inflammation and scarring in my sacroiliac joint. I have read a lot about various medical problems over the years, looking for something that made sense for me, but never really finding anything that sounded right. When I read about AS, everything fit. All the descriptions sound like exactly what I've been going through, and all of my symptoms can be explained by this disease. I feel confident that this is the right diagnosis.
Here's what's coming next: I still have to do a few more tests to rule out other problems (lupus and kidney stuff, in particular), more xrays to assess the damage in my hips (they only did spine, pelvis, and feet the first time), and an MRI to get a better idea of how "active" my AS is at the moment, which will determine what treatment options I have. (I am very grateful that I have no anxiety about doctors, hospitals, tests, needles, etc - It's not exactly fun, but this stuff is not difficult for me, as I know it is for some people.) It's important to know exactly what is going on and to treat the inflammation, because the potential exists for my spine or sacroiliac joint to become fused after all this inflammation, which is one the least pleasant possible effects of the disease. (As my doctor with the not-so-great bedside manner said "If that happens, you're done"... I think that "you're done" is probably not the most helpful phrase to use when talking to a patient about possible effects of a disease, but I determined that "you're done" in this case means not "you're dead" but "it's done and there's nothing we can do about it at that point.")
So, if the MRI shows that the disease is very active in my spine, we'll have to "hit it hard" to get the inflammation under control and reduce the risk of fusion. This would likely mean taking "TNF blockers" which are basically immunosuppressant drugs that block the "tumor necrosis factor" which is part of the inflammatory response that is causing all this trouble. I would highly recommend not googling those drugs, because the list of side effects and risks is pretty yucky. (I wish I could make this same recommendation to past-Sara who read all this stuff yesterday and freaked out.) These drugs are either given by injection at home or an infusion at the doctors office. I will obviously do more research on this, but my doctors's opinion is that if my MRI shows very active inflammation in the spine, we don't have a choice but to use these drugs, because the risk of allowing the inflammation to continue (and possibly result in fusion) is too high. If the MRI isn't so bad, I may have other options with less scary drugs. Either way, I will be starting physical therapy and exercise that should help reduce pain and hopefully prevent fusion of joints. So, lots of tests and appointments in the coming weeks to get this all figured out and determine what treatment plan we start with.
I have a lot to be thankful for:
- I am so glad we finally decided to pursue this and get answers, and that the first specialist I saw was the right one, and he did all the right tests to figure it out.
- I am grateful that we are financially stable and have great medical insurance! If those things weren't true, this would be much more stressful.
- I have no problem with needles. If I have to give myself injections, I can totally handle it. I'll just never talk about it to my dad, who would probably pass out. :)
- This is something where being more active is good. As hard as it is to get myself moving when I feel lousy, I'm grateful that, at least in the near term, I will not be asked to be less active, and I'll have a really good reason to get serious about exercise. And playing with football with Sam or hiking with my family will be good things, not things I need to avoid. This is way better than the reverse.
- My husband will still think I'm beautiful, even if I end up looking like this: Reason why you shouldn't look at medical stuff on the internet :)
- In some ways, it's really nice to have a diagnosis, to have some outside verification of what's been going on. I've spent years not feeling good and sometimes wondering if it was all in my head, or if I was just a big wimp or a hypochondriac or what. There's something comforting (right along with terrifying) about being told "Yes, you really do have a serious disease, and that's why you feel so bad." And the increasing fatigue I've been feeling is a common effect of your body constantly fighting inflammation (while also linked to the sleep problems I've been having.) So I can feel better knowing that I'm not just lazy and unmotivated. :)
- I'm not going to die! Mike's imagination has gone to all sorts of things that are much worse than this. I don't have a giant tumor in my back or anything. :)
- I actually accessed my lab results at home on Monday, and I knew what they probably meant, so I did most of my freaking out on Monday. By the time I went to the doctor yesterday, I was more informed and ready to have an intelligent conversation. This was good, because there was a lot of information to take in.
- There are a lot of peripheral things that can be affected by AS, but I don't have any of them right now. The only peripheral symptom I am experiencing is irritation with tendons in a few places. I don't have eye problems, skin problems, intestinal issues, pain in my feet or shoulders, or any signs of problems with heart, lungs or other organs. That is all very good.
- In the near term, I may end up feeling much better than I have in a while. I'm not excited about taking these drugs, but if I do, I may have less pain than I've had in a long time.
- I have the best husband in the world, two wonderful kids (who are old enough that they don't need me to do as much for them, which helps when I'm not feeling good), great friends and family, and a really supportive church community. I'm a lucky girl.
So... that's where I am right now. Just thought you'd like to know. I'm still processing all of this and feel a bit overwhelmed at times, but I'm doing just fine.
Feel free to ask questions, or give advice (or hugs). I have worked very hard for years to not complain about my pain (to anyone except Mike - who has spent years listening to me whine almost constantly), and I am going to try to continue that, but I also don't want to act like this is not going on or not affecting me. So, I'm trying not to be all secretive about it either.
If you want to throw a few prayers my way, that would be much appreciated. I feel very clearly God's presence with me in this, and I'm asking for peace and strength.
Love you all. Thanks for being such good friends!
