Wednesday, May 18, 2016

Holding Pattern

I went to a follow up with the neurologist yesterday. Before I even left his office they had called Mayo with the referral. Mayo will "review my records", which will take 7-14 days, and get back to me (hopefully) with an appointment date. It can take up to six months to get in and the appointment will be about a week long thing with back to back tests and doctor consults. At the end of that week I should have a firm handle on what is happening in my brain and what the best treatment plan will be.

In the mean time...I'm in a sort of holding pattern. Because my response to the steroid IV has been so good, and the return to symptoms happens after about 2 weeks of being off the steroids, the doctor has changed the treatment to 1/2 the dose I was getting but twice a month instead of once a month. I'm really hoping I get as good of a response and that increasing the frequency makes the effect last longer.

I'm also hoping the appointment at Mayo doesn't conflict with Dwayne's Ironman (end of September). Make no mistake, my health, and that appointment, does take precedence over IMChoo, but I would really like it if the choice didn't have to be made at all.

The important thing for me to keep in mind is that "holding pattern" doesn't mean that life stops. When I have having to wait for something major to happen, I have a tendency to let other things fall apart. "Well, I'm really sorry I didn't wash any clothes for three weeks, I'm just anxiously waiting for X to happen." (yes, that's an exaggeration) (maybe) hear a ticking noise. You aren't sure, but it sounds like a clock. Or maybe a bomb. You aren't sure, but you've been told to wait to find out. Yes, I'm being a bit melodramatic...have you met me?

What I do know:

  • there is something going on in my body that is impacting the way I think, see, feel and function. It's not HORRIBLE. I could get by without ever telling anyone something is wrong but people who know me well would notice something is "bothering" me.
  • whatever it is that's wrong responds to steroids. That magic juice makes me feel like ME.
  • a very smart doctor has said, with certainty, that thing that is wrong with me is Hashimoto's Encephalopathy (aka Autoimmune Encephalopathy)
  • my very smart doctor has said there are other doctors who have seen many more patients with this who will know the best way to treat it so I'm being referred to the best of the best
I can't get hung up in the thought that I am waiting "UNTIL" I go to Mayo. I have to keep moving forward.

Thanks for stopping by and sticking around!

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Don't hold back, tell it like it is....