I have been quiet here on the blog. I’ve been quiet everywhere, and I’ve been staring blankly at this screen for a while with a loss for words. A little ironic, I know.
After 12 years of chronic pain, two years of tests, imaging, and waiting to see a rheumatologist, years of pain now has a name. I have officially been diagnosed with Ankylosing Spondylitis (AS). In short, my body is attacking itself, and over time, my spine may fuse. The diagnosis has dashed my hope a little. When I thought the pain was just from car accidents, I had the hope of healing if I followed the right rehab program. With an autoimmune diagnosis, I know this isn’t going away. From what I’ve read, AS can be triggered from trauma, so I do wonder if this was caused by the car accidents.
I often get asked how often I’m in pain, or how many days per week I’m in pain. Seven days per week, 24 hours per day. It doesn’t go away. I wish it did. There is no break, and it causes a lot of fatigue just existing some days. The pain does fluctuate throughout the day ranging from a three to a six out of ten.
The pain makes me feel crazy sometimes. I am constantly calculating my every move, especially during a flare. If there is pain shooting down my leg, I calculate the steps I need to make around the house, trying to plan a route so I don’t have to repeat any unnecessary steps. Everything has a “cost.” There are things I must do, like get ready for the day, likely attend an appointment, and go to work. Those are daily costs I must account for. Now, other normal things like having a shower, cooking, doing another chore, or taking care of my children also have a cost, and are very calculated. I know if I cook, I may not be able to play with girls. If I shower, I may be too fatigued to cook. (Don’t worry, showering wins every day.)
As my husband said bluntly to me this week, “You’re good at hiding your pain. It’s time you let others know. Stop pushing yourself.” I’m good at hiding the invisible. There was this invisible thing, then that. While AS is yet another invisible diagnosis, it’s not as easy to hide if I’m having a flare-up. Wincing while I breathe, groaning while I bend, or limping to get around is noticeable. I feel like I’m 80 years old. It’s so hard to ask for help, especially when I feel like I should be doing “normal” things. Obviously I won’t be going snowboarding or golfing, but I’d love to be able to manage more daily tasks without struggling, like picking up groceries, driving, vacuuming, or even opening the fridge.
After meeting with the rheumatologist, she has suggested starting biologics for treatment. After you fail three or more non-steroid anti-inflammatory drugs (NSAIDs), you can qualify for biologics. She listed off a whole list of medications I forgot I had even been on! Biologics are meant to suppress the immune system so my body would stop attacking itself, but I wouldn’t do so well at fighting off anything else that comes my way, like colds, flus, or anything else! The risk of infection is three to five times higher than a non-compromised immune system. These types of drugs are only administered via injections that I’d have to do myself each week. Biologics also come with a price tag of $20,000 per year. My rheumatologist would help me build a case for financial aid.
I’m really struggling emotionally and mentally with this, and of course physically. It hurts to sit here and type this. Once you go on biologics, you don’t really come off because your body can start building up antibodies, and when you go back on the medication it may no longer work. Do I just go for it while my girls are young so I may have the chance to enjoy life while they’re little? Do I wait until they’re older so they understand why I’m constantly washing hands, wearing a mask, or staying away from them when they’re sick? However, if I wait, I risk fusion in my spine (and ribs, the list goes on).
There is no cure for AS. Discernment is very difficult. Every decision has a risk. It has been really hard to share about the diagnosis. Thank you to my friends and family who have been so supportive as I’ve slowly shared. Thank you to our friend, Stef, for organizing a meal train, and to everyone who has dropped off a meal or contributed towards take-out on days I’m in too much pain to cook. We have been so overwhelmed by your love and support. You have no idea what a relief it is knowing that a meal is coming. It has been such a life saver! Thank you!
I’ll continue to share my family’s stories with you, though it may be less frequent than before. I’ll still be on Facebook throughout the week. Having a community around us has been so helpful. Thanks for journeying with us.