It was one year ago yesterday that I was diagnosed with Ankylosing Spondylitis. It's been quite a year! I thought I'd send a little update to all of you today, since this anniversary is making me feel rather reflective. Besides, it was mid-August the last time I wrote all of you, so there are a few small updates to give anyway. Be warned, this email is rather long and maybe more detailed than some of you need to hear. I promise I won't be disappointed if you just skim over it for the highlights. :)
On the medical side of things, here's where everything stands:
- I have been on the Humira for about four months now. Side effects are still minimal (just a few days of headache after each shot), which is great, but I haven't noticed any significant improvement over this time. I continue to struggle with steady back, hip, and SI pain, along some other random joint and enthesis pains that come and go, as well as a lot of general fatigue and just not feeling well. Some things seem to be a bit better (my back maybe?), while others (my hips and SI) are causing more pain than before. I will see my rheumatologist next month to see if he thinks I should continue Humira any longer (if insurance even will approve a continuation), or if maybe we should try a different biologic to see if something else might be more effective.
- My feet are really my biggest issue right now. I have trouble standing or walking for very long, and this is becoming rather limiting. I am seeing a podiatrist now, and I had custom orthotic inserts for my shoes made. I've gotten used to wearing these all the time, which is supposed to correct any mechanical problems with the way I stand and walk, as well as provide very sturdy support for my feet. They haven't seemed to make a difference so far, but it's possible I might need more time to notice improvement. I'll also be back at the podiatrist next week to talk about what else we can try. On the upside, we continue to make little modifications in our home and changes in the way I do things to make this easier, and those steps have been helpful. I also have a handicapped parking tag now, which was a bit of an ego blow for me but does make things easier on the rare occasions when I feel like I need to use it.
- I started a new medication about three weeks ago - sulfasalazine, which is a DMARD (disease-modifying anti-rheumatic drug), the last category of AS medication that I was not already taking. However, when I went in on Tuesday for routine blood work to monitor how my body is responding to this new medication, we found that I had elevated levels of liver enzymes. While liver problems are not common with sulfasalazine, they do happen, and since this medication is the only major change since my last blood work, it's most likely that the sulfasalizine is the culprit. So, I've had to discontinue using it. I'll be back for new blood tests in two weeks to see if my liver function has returned to normal. Most likely, it will all be fine. We're not too worried about it, but it's a bit of a bummer because having problems with liver function while on this medication can limit future medication options as well. I hadn't noticed a significant difference in my pain levels over this time with the sulfa, and it did make me a bit nauseous, so I wasn't too sad about being taken off it. However, now being off it for a few days, I'm wondering if it was helping somewhat, because my pain levels have been up a bit. But things vary a lot day to day based on a lot of factors, so it's hard to tell if stopping the medication was the cause. Either way, it's a done deal, and I won't be using it again.
- No more problems with my eyes at all. I am very thankful for that.
So, that's the medical update. As for the rest:
To be perfectly honest, this is hard. It's hard not knowing how I'll feel on any given day and what I'll be able to do. It's hard having to plan my days so carefully, thinking about how much I'll have to stand and when I can rest. It's hard stepping back from things I really value and love to do. It's hard feeling lousy while knowing that I look just fine. It's hard feeling isolated at times, especially as we cut back on social activities and other commitments. It's hard not knowing what the future will bring. It's hard to be faced with so many temptations - to self-pity, jealousy, and most of all, selfishness. It's hard to deal with the reality of chronic pain. It's hard letting go of my ideas of the kind of person I want to be and the kind of life I want to have.
So, yeah. This is hard. But a lot of things in life are hard, and, as a friend once told me, "everybody's got something." So, this just happens to be my something. And I am getting better at it. I'm also learning that just because something is hard, that doesn't mean that it can't also be good. It is good to let go of pride, to recognize my own weakness and sins. It is good to be forced to seek God's plan for me, rather than just my own plan. It is good to humbly rely on others. It is good to struggle against selfishness, to have so many opportunities to really sacrifice for others. It's good to deflate my ego, to realize that I'm not nearly as wise, holy, or strong as I once thought. It is good to have to be more intentional about how I use my time and energy, to really consider what is most important to me. It is good to become more compassionate towards the suffering of others. There is a lot of good to be found here, and I'm doing my best to keep my eyes on those things.
I think I have entered a new stage in dealing with this whole thing, where my focus is more on learning to accept my limitations and starting to make changes in our life that will make things easier. While I still remain hopeful that we will find some combination of treatments that will reduce my pain and help me feel better (or that my disease will spontaneously go into remission - which does happen with AS sometimes, I've learned), I think that it's also good to work on accepting this new reality and building a full, joyful, generous life in a new way. Mike and I have been talking a lot about what changes we need to make to accommodate our new reality, and we're considering a lot of things, both big and small. I have a hard time letting go of my ideas of who I want to be and what I want my life to be like, but I'm trying to be attentive to what new plans God might have for me. He's always full of surprises! After a really rough spell two weeks ago, I am also working on being more intentional about how I use my energy, so that I place a priority on being present for my kids and for others God is calling me to serve, even if that means letting go of certain things that I want to do or feel like I should do. (There's a lot less cooking and cleaning happening around here these days, that's for sure!)
I also realize that I am experiencing this struggle in the midst of a life that has been ridiculously, abundantly blessed:
- I'm walking this journey with a companion who is amazing and faithful in every way. Mike is working so hard and sacrificing so much for me and for our family, and I know he does it all willingly with great love and joy. I am so grateful to have a best friend who I can pour my heart out to, over and over, who never gets tired of listening to me cry and always encourages me to be a better person in the midst of it. (Next time you see Mike, give him a big hug and tell him how great he is. And maybe invite him out for a beer or something and ask him how he's doing. He's a serious extrovert stuck home with tired, achy me a whole lot, and this disease affects him as much as it does me.)
- My kids are growing so much through this whole experience. I am so glad they are old enough to understand (and not need me to pick them up anymore!). They are so compassionate and kind. A wise friend recently asked me look for the fruits God is bringing out of this suffering, and the way Sam and Benjamin have grown in virtue in the last year is certainly one of them. Also, they are hilarious and sweet and interesting and full of joy. What a gift.
- I am thankful for the wonderful friends I have in my life. So many people have reached out to me and offered their support and love, and I am really grateful for that. Many of you sent cards, letters, and prayers for my birthday, and I want you to know that this really made a huge impact on me. I know I am well loved!
- My faith has grown and changed so much in the last year. God is teaching me a lot. Sometimes I wish I could learn these lessons without hobbling around like an old lady, but I'm glad He's teaching me just the same.
- I am grateful for a lot of other things too: medical insurance, chocolate, a flexible part-time job, quiet time at Eucharistic Adoration, hugs, restful days at home, the mass, wise words from wise people... I am working on spending more time in gratitude, because really, I am just surrounded by blessings.
I debate about sharing all of these reflections with you, for fear of being whiny or preachy or just ridiculously long-winded. But I am always encouraging people to be open about their struggles so that we can all know, love, and support each other more fully. So, I figure I'd better practice what I preach. Please know that I am well aware that each of you has struggles of your own, some of which may be weighing heavily on you as well. I would be honored to share your struggles and pains (and joys too, of course!), as I invite you to share mine.
For those of you that are praying for me, please keep it up. I would certainly love a treatment breakthrough that would improve my physical health, and I'm not going to stop you praying for that. But I think I am in most need of God's grace in my emotional and spiritual health - So, if you would pray for me to be open to God's will, to learn to rely on Him in daily life, and to become a more selfless person, that would be awesome.
I am also actively seeking wisdom right now, from anywhere I can find it, so if you have a scripture passage, quote, book, experience, or advice that you think might be helpful to me, I'd love to hear it.
God speaks to me through music, and these lyrics from "How Can I Keep From Singing" really struck me recently:
I'm still working on living my day to day life that way, but, at least in my best moments, I'm still singing. :)
Anyway, that's the latest from my end. I really appreciate all of your love and support. You are pretty great.
With love,
Sara
