Thursday, October 22, 2009

The only thing predictable about dysautonomia is that it is unpredictable.
I read this great description of dysautonomia today. It said that it's when the "body's autopilot is on the blink." I prefer the word fritz, but it works. :)

Thursday, October 15, 2009

It's Been A While...

So, I haven't been able to update in almost 10 days. On October 1st, I had to be taken to the ER by ambulance because I almost lost consciousness and I was home alone. It was a giant waste of time, but what else are you supposed to do when you could pass out, your heart feels like it's going to explode, and you can't breathe? I told the ER doc that I have dysautonomia and then had to explain what it was to him. That was comforting. Anyway, needless to say, they weren't able to do anything for me. They pumped me full of saline, gave me anti-nausea meds, and prescribed Ativan for me. LOL Ativan? WTF? Just goes back to the fact that doctors who don't know or understand what's going on with someone resort to anxiety and stress. (Note: Dysautonomia is misdiagnosed as anxiety or panic disorder the majority of the time a patient presents with it.) Makes me laugh now, actually...and it makes me a little sad that these are the people we trust to care for us when we're sick. Since October 1st, I've had a lot of rough days marked by two really decent days...which I am so thankful for.

Anywho, I am working on figuring out what meds/treatments are going to work for me. As of right now, I am on low dose Midodrine once a day. This helps keep my BP up when it has a tendency to drop. I'm also using compression stockings to help with the circulation in my legs. I'm trying to eat healthy and drink plenty of fluids as well. I'm monitoring my BP throughout the day and keeping a log of all my symptoms/episodes. I'm also trying to get as much rest as possible because the fatigue is kicking my ass! Just doing the best I can.

On a great note, my doc has been wonderful and supportive. We've discussed everything, including the possibility of me having an autoimmune disease. He said it's definitely something we can look into. He also put me in touch with a neurologist in the Neuroscience Dept. at Stanford and I have an appointment set up with them in a few months. My doc has also devised a plan. He has a new medication that we might add to my regimen, if after a few months my symptoms are still as bad as they are now. Although I admit that I'm hoping I wake up one day and realize this was all just a bad dream. However, if that doesn't happen, I'm happy there's something else we can work with.

All in all, things are okay. Just working on getting healthy, spreading the word about dysautonomia, and trying to work on some art projects...thought maybe it would be therapeutic. :)

Tuesday, October 6, 2009

The last 5 days have been really rough. Since going to the hospital on Thursday, I haven't had the energy to update my blog. I will be writing to catch up soon.