Friday, April 20, 2012

#HAWMC - "What if there was a cure?"

Oh, today's writing assignment is ironic... I'm supposed to write as though there's a cure for my disease. Interestingly enough, that actually happened to me. Only my disease is so rare, there can't be a clinical trial for it. I just get to try it. And I just finished up my Seattle trip with the doctor who is going to potentially arrange it. I'm waiting to hear back from her on when we get to start. Right now she's getting information from the people who wrote the article on the cure, to see what dosage we need to put me on. If all goes well we'll set a date to start, 16 weeks later I will have survived the treatment, not gained an excessive amount of weight on the advanced steroids, and be without any traces of my pituitary disease. I'm *still* in shock and awe. I never thought it would happen in my lifetime, or to me, or to a disease so rare!

Ironically, I was in a full-blown passive suicidal ideation phase at the time, when I got the news. I was angry and frustrated, but I had already started this blog, and my goal here was to not give up. My whole purpose for this blog was to figure out how to make a slow, painful slide into the grave something that I could endure. I was going to put a brave and cheerful (but not sugar-coated) face on, and teach other people how to go what I was going through, so that I could in turn, teach myself. My mother, bless her heart, had some good wisdom. One piece was: "The best way to learn something is to try to teach it to someone else." And she's been right about that one my whole life.

When I was tutoring other kids in math, my math got better even if I wasn't in the same class as them. When I started teaching other people how to get through the god-awful emotions that come along with chronic illness, I got better at getting through my own. One clear sign? I've needed less therapy and my psychologists (I see one for meds and one for talk) both say I'm doing really well. I've graduated to phone conversations, as needed, for my talk therapy. My medications we're not changing, because I'm stable on them. I see my prescribing doctor once a month. And this was all before I got news of a cure.

Since then, I also found another woman with the same disease as me, someone my own age whom I could compare notes with... I also thought that would never happen to me in my lifetime! She is, like me, a medical unicorn. We have surprisingly more in common than either of us could believe. She is my sister in this disease---my unicorn sister. And though I am sad she has to suffer like I so, I am ever so grateful for her company. It is a really big deal to no longer feel alone.

It's an even bigger deal to have all my symptoms validated through her near-identical experience of our disease. See... they don't know much about what is normal and a part of our disease and what isn't. With only around 350 cases known, it's kind of difficult to tell what's going on. Additionally, there are sub-types of the disease depending on how the disease was caused, and what part of the pituitary the disease strikes. So it's really difficult to know what's what! But she and I are so parallel, we're both starting to think this is all tied to the pituitary disease. (It's the only biological thing we have in common!)

So for today's prompt, I don't have to imagine. I've been blessed. I get to live the dream. There is a cure. My doctor knows about it. She's researching the protocol for the treatment for me, as we speak. We can get rid of my (potentially deadly) disease, Autoimmune Hypophysitis.

I will probably still have the nerve damage I have, but it will stop progressing. I may even get rid of my chronic migraines! But I find that highly unlikely, based on my migraine research. Migraine brains are different than other people's brains. However, the migraines may decrease in severity and frequency, since the attacks on my pituitary will stop. It's reasonable for a brain to be in pain when part of it is under attack from the immune system. So logically it would follow that if the attacks stop, the pain will stop. It's not a guarantee, but it's a hope, I admit.

In the meantime, I'm full steam ahead on my physical therapy, and I'm improving slowly but surely. My new pain doctor has several options we can try to bring my nerve pain under control, and so far, *fingers crossed*, it seems to be working. Yesterday should have been a really bad flare day, and I did remarkably well for me. Yes, I had an episode, but it was a lot more manageable than in the past. All of this is progress I could not have dreamed of a year ago.

My case is not normal from the word go. People don't get diseases this rare. Cure's aren't found for diseases this rare. Cures aren't found for things like brain diseases. Cures aren't found for autoimmune diseases. None of this should have worked out the way it did. There is DOOM written all over my scenario. And yet, just as dramatically (which makes it even more unbelievable), the miracle happened anyway.

This just doesn't happen. Real life does not play out like this. Not even a Hollywood writer would try to make a story-line like this. It's nuts!

And yet, completely, factually true.


  1. It is amazing to consider - I wish you all the best with your treatment as you go forward! Wow. I can't even imagine what it would be like to live without illness - which is part of the issue, no doubt. It would be an interesting exercise to write that for myself - I'm so glad your story isn't a fable!
    Adventures in Anxiety Land

  2. Oh, I won't be without illness, but I'll be without the one that can kill me, and it will cut my medication needs in half!

  3. Thank you from the very depths of my soul for being so brave for both of us!

  4. You make me brave :D I'm not just fighting for myself, I'm fighting for you too. It's not just about me, and that makes the struggle a *lot* easier. Thank you for being my Unicorn Sister!