Uncharted Territory

I’m in uncharted territory now with my feet. It’s been over 7 months without being able to move them and June 2, 2016 was the day I got back on my feet last time. Now it is all a mental game. I’ve adjusted to the pain of 24/7 spasms. I have my bad days, but for the most part, I’m used to it now. For the last 3 months, the integrity of the skin on my feet has diminished significantly and I have wounds opening up daily at this point. It’s a battle to keep them from making a mess or getting infected. The blood flow is always less than optimal as well, which certainly doesn’t help the skin issues.

An update on the neurologist front: I had a follow up appointment with my neurologist on June 5th. If we can get insurance to approve it (which they did!), I’ll do 3 months of outpatient IVIG boosters and we’ll talk again in September. Fair enough. The IVIG needs to build up over a period of a few months. There’s been some progress, but more will be necessary to get my legs fully functional again.

The plan is to get the first booster June 23rd, one in July, and one in August, before following up with the doctor in the second week of September.

I have to say, it was extremely validating to hear my neurologist tell the resident (who actually trained at Mayo), that this wasn’t a neuropsychological disease, because I have such ridiculous autoimmunity with antibodies that attack the central nervous system (and thus, make things not work the way they are supposed to). Only took them five years, at least 25 misdiagnoses, countless tests, and almost dying a handful of times before they decide it’s not in my head. Nice. 🙄🤦🏼‍♀️

The stiff person syndrome made it on to my UPMC medical record for the first time ever and now I finally have someone in Pittsburgh who listens and has some idea of what he’s talking about. Jeez, I never thought this day would come!

So yep, that’s the latest on the medical front. My hours at work double this week and I’ll be writing two final papers, so I’ll be very busy this coming week. Many doctors appointments scattered throughout the week as well, and the insurance finally approved my Xolair injections for my allergic to everything immune system. It worked really well last time, so I’m hoping that I continue to have success with it.

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