In the cover photo, I'm seen with the eye-patch I use during my iritis flares. In the photo directly above, my head is all wrapped since I've recently lost my hair while taking methotrexate to treat my auto-immune disorder. Sometimes I have a cane with me, if the bone pain is particularly bad, but most of the time I don't.
I have had ocular migraines since I was nine, and they can last for weeks without appropriate medication (and have landed me in the hospital more than once), but I've got an injection medicine for that now, so they're a little more under control.
Along with my migraines, I have an autoimmune disorder called Ankylosing Spondylitis. This means the bones in my back are fusing (for complicated reasons), and it impacts my vision during flares. The pain in my eyes is how I ended up being diagnosed, once regular treatment for iritis/uveitis (the inflammation of the iris and eye) were unsuccessful. However, there was some permanent damage done to my eyesight, and so I've had glasses since mid-2018.
Sometimes I have used a wheelchair, when my knee or hip or lower back won't cooperate, and other times, I use a cane. Some days, I need neither. I've got a parking-ninja pass that I use on particularly difficult days, too.
Braces continue to be important, and I use speech-to-text software when my hands aren't up for typing. I manage the migraines with the use of small amounts of Topomax (too much gives me brain fog), emergency medication like Sumatriptan, Aimovig, and sunglases. There's also eyedrops, anit-imflammatories, a biologic injection (called Humira, it comes in a pen-like cartridge and needs to be stabbed into my leg regularly), and now methotrexate (a medication also used for chemotherapy).
With the help of the meds and a pretty rigorous physical therapy regimen, I've managed to get to where I have been able to regain some of my strength and lose a good deal of my pain, which is absolutely wonderful. I'm not sure how long that'll last, but it's fantastic for the time being.
I've also started losing my hearing, which is a little interesting considering my use of ASL and interactions with the Deaf community, but of all the things that could happen, this is the least problematic since my kids sign, as does Pablo, and so do a good number of my friends.
The whole mess that keeps me running looks like this:
I'm more tired than I used to be, for sure. This means making deliberate decisions about what I can, and cannot, do on a daily basis (following something called the spoon theory, which you can read about here).
However, I am learning to get along better with my spine and eyes, and if you have questions, I'm generally very happy to answer them.
