Back on an even keel

So I guess it’s official: Abilify broke my brain because I can’t function well without it anymore. I’m back on the lowest dose as of yesterday and already feel so much better.

I’m watching closely to see if the lower dose will cause out-of-control spending. But if it does or I need to go off of it for any reason, I’ve learned my lesson the very hard way that I can’t just quit taking it cold turkey.

The good news is that my anxiety (which was absolutely off the charts) has already retreated. I’m no longer walking around with the feeling of doom, certain that both my husband and I are going to die suddenly.

I also feel like I am capable of doing my new job again, which starts in about two weeks. I still have some apprehension about getting time off for my youngest son’s graduation and the things necessary for starting at his university (like a mandatory two-day orientation and of course, moving him into the dorms.) But I’ll cross those bridges when I get to them, I guess.

I also found out from my neurologist that my latest genetic test was negative and I don’t have CARASIL. So she wants me to do a much broader genetic screening test that will test for about 50 different rare diseases that cause white matter loss in the brain.

On the one hand, I’m so glad to finally have a doctor who takes me seriously and isn’t just trying to diagnose me with MS, since that’s clearly not what I really have.

But on the other hand, finding out what I actually have is really only a matter of satisfying my curiosity at this point. It’s been 8 years since I’ve been on this diagnosis journey and getting some definitive answers will be a relief, I guess. But the fact remains that no matter which one of these rare genetic conditions I have, they’re all incurable and untreatable.

Because they’re also rare, nobody really knows what incurable will look like for me. They don’t know how the disease will progress or how my lifespan will be affected. When I finally find out what I really have, I think the reaction will just be like, “oh.” It’s not like they can start me on any treatments or tell me what to expect from my condition. It just is what it is and I will do whatever I’m able to…just the same as now.

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