After two months of no treatment, I was hoping that IVIG would bring about a rapid change in how I felt. Well, that wasn’t exactly what happened. Right after IVIG, a nasty heat wave struck, and I holed myself up in the apartment with the AC going and ice packs at the ready. I still ended up in the ER for fluids. Basically I got diarrhea, then constipation, and all of it aggravated my already dehydrated body.
IVIG isn’t a fix, it’s a patch, and that’s okay.
I knew going into IVIG, that it wasn’t a cure. The infusions don’t last, and the impact isn’t always the same. It really just depends on how my body handles it. When I went into this round of IVIG, I was severely flaring. I had vaginal ulcers, uveitis, GI ulcers, and neurological issues causing muscles spasms and tremors. Basically, all my Behcet’s issues were going full blast. My eyes are better, my vaginal ulcers have healed, and my GI issues have improved. I still have gastroparesis, and I still have inflammation from where the ulcers were, but I’m no longer actively bleeding.
Neurologically, though, things aren’t ideal.
Thankfully, my tremors have gone away, minus the mild tremors I’ve come to just accept as part of my life. My walking did improve, but it didn’t go back to normal. I have tried my best to walk normally, but it just doesn’t happen. When the physical therapist from home health called on Thursday to come and evaluate me, I figured it was perfect timing. I was having a decent day minus the nausea. When I showed him where to park, he was watching me walk (without my knowledge), and noticed that my walk isn’t “normal.” I know that my feet roll inward, but what I hadn’t realized, was that I was still dealing with foot drop.
During the formal evaluation he pointed out the moment when I was unknowingly compensating for my foot dropping. When I corrected myself and tried to walk properly, it was nearly impossible. It also hurt…a lot. Then he brought out the foam pad, and even though we expected balance problems, I wasn’t prepared for what actually happened. The second I removed my hands from the counter, relying on my legs to support my body, my left leg locked rigidly, while my right leg locked bent and the knee, with my foot rolled awkwardly. Frustrated I tried to unlock them, but they were pretty adamant about staying locked. I could only unlock one leg at a time, which would worsen the other leg’s spasm.
The therapist said what I knew, but didn’t want to hear. The issue was clearly neurological. My feet, and legs, were locking down in positions that indicated nervous system damage.
It wasn’t as a surprise, but it was something that hit me harder coming from a medical professional. Despite my background in school, and experience from working in the medical field, I had talked myself into a false sense of calm. I would tell myself that certain issues were just a result of so long without treatment, and weak muscles. I also have told myself it’s just the heat. While the heat exacerbates the issues, I have to admit that I’ve noticed the issues on a milder scale, even when it isn’t hot.
I have a power chair that isn’t portable, and a non-customized manual chair that is portable but very difficult for me to actually use. There are so many things I want to do, and once again, it feels as though my options have shrunk. I’ve begun fundraising for a portable power chair, something my insurance doesn’t cover, while feeling guilty for asking, yet again, for help.
Some days I am positive, but other days I accept that it’s okay to be angry. I have lost a big part of my independence. Options, like the chair, exist, and I hope to acquire them someday, but for now, I’m stuck. The lack of independence that comes with neurological issues is hard to put into words. You’re still you, but your body isn’t yours, at least not fully. I can think and want to do something, but ultimately I rely on my nervous system to carry out the action. I see my neurologist next week. I’ll be discussing with him the issues I’m experiencing with my gait, as well as discussing with him my unending brain fog.