I was wrong when I assumed many of you knew what was happening with me, health-wise. After my recent Instagram post, I received several messages asking me just that. And since I can’t really spend a huge amount of time typing these days (my fingers fall asleep and my wrists scream), I’ll lay it out here. I’m working on a longer three-part blog post about some of this, but that’s slow going due to the hand issue, and now the neck.
The basics: Ankylosing spondylitis (AS) is inflammatory arthritis. It’s a relatively rare autoimmune disease that seems to affect more women than men. Now that I understand how numerous — seemingly disparate — symptoms can indicate the presence of AS, I’m willing to bet this shit storm has been raging inside of me for a decade or more. There is a theory that autoimmune diseases are the body’s response to childhood trauma — and I will go out on a limb and add inter-generational trauma to that. I have both (I say without a lick of doubt), which may or may not have contributed to a lifetime of illness. What began as a cleft palate grew into myriad health challenges that have dogged me my entire life.
But back to the AS. When my back and hip pain – which I’ve battled since I was 25 – became unbearable, my primary care doc sent me to a rheumatologist. After x-rays and a terribly uncomfortable MRI, the doctor came back with the definitive Dx. It was a relief, in some ways, but it was also the beginning of a whole new health trip on which I did not wish to embark. I wasn’t packed. I don’t like the itinerary. At ALL.
AS tends to affect the lumbar region first, then progresses to the cervical spine. When I started immunosuppresants, my back pain was reduced by 75%. I was SO relieved. By the second bi-weekly injection, I was feeling like I could go back to seeking gainful employment, that I could finally put my energy into something else besides managing pain. I was ready to put myself “out” there. But in the wake of the second injection, I started experiencing terrible headaches, dizziness and neck stiffness/pain/cracking – soon I noticed that I was really really tired by around 4 pm each day, and I was getting up a minimum of three times a night to pee. Then the bone spurs on my hands started getting worse and my fingers were bending sideways. My elbows hurt. My Morton’s Neuroma on my left foot was killing me, and wearing anything besides Crocs with metatarsal pads in them was not an option. I felt (feel) sick, like something is going on inside me and it’s nefarious, vampire-like.
I called my doctor’s office, explained my symptoms, and told them I needed to get in sooner than this Friday, March 5. Within an hour I got a call back telling me that the doctor wanted to see me ASAP, but at the south Denver office, which is 35 minutes from our house on a less-traffic day. Thankfully Sandy wasn’t teaching so she was able to take me there, and she heard the whole appointment via speakerphone while sitting in the car. I reiterated all of my symptoms and the doctor seemed concerned; he took me off the medication immediately, and suggested that I may have something going on with my white blood cells. I got more labs done as well as a neck x-ray, and left with a script for muscle relaxants (Flexeril, which I hate, but it works) and a promise that the doctor would call before the end of the week with lab results and a path forward.
Some days I feel angry, some days I feel despondent and terrified. Sandy always reminds me to deal with what’s in front of me only, nothing more. No borrowing trouble, as Carolyn Woodson used to say. Even Sandy, the consummate researcher, has not read up on AS because she doesn’t want to get freaked out. The other day, as I was crying and frustrated by the entire situation, Sandy looked at me and said, rather plainly: We have not yet begun to fight.
Damn if I didn’t marry well.
Like all autoimmune diseases, AS varies in how it affects each individual. Some people have mild (or barely noticeable) symptoms, while others are using a wheelchair due to the stiffening of the spine that occurs with this disease. In my case, my L4 and L5 vertebrae were deteriorating and arthritic (which is not all that unusual as you age), but instead of the arthritis just hanging out in the joint, my body sees it the inflammation as an invader, then calcifies around it. Thus the spine is stiffened, rendered immobile. Not fun.
In these instances, there’s always a fine line between moving one’s body and not overdoing it. Finding that line is my next task. I will NOT let this disease keep me from hiking this spring/summer. I need my outdoor chapel more than ever. And I’m so very grateful to those friends who will come pick me up and get my ass out there. Anyone have suggestions for good hiking poles? I’m gonna splurge on some Lowa boots once we get our tax return, and I’m going to just pretend that what is happening to me will be remedied, or at least sufficiently controlled, so I can get myself back into shape. Sandy and I have so much ahead of us.
Attitude is everything.
*Image: Sandy’s first stained glass window (and a favorite), 2016
Everything is Always Over 