Sunday, October 20, 2013

Zombies! Run!

Update: 
Nothing like fainting down the stairs to wake you up. 
Still no service dog, the ones that were possibilities for this class weren't right for me. One was "unmotivated" and placed as a home companion and the other "alerts by peeing on things and people." Needless to say, not a good dog for a girl who faints as often as I do. He has been placed with a friend of mine from CPL who doesn't need alerts. Still waiting for the right dog to come along, can't wait! 

I returned to Dr. Grubb last month, this time by train, which was quite an adventure. He is still the wizard! We are going to try Epogen (if my insurance ever approves it). For those of you who don't know, Epogen is a drug that you inject weekly and it increases the red blood cells in your blood. Since I increase my blood volume so much with water, salt, and florinef, the thought is that my blood might be too "thin" and Epogen might help. Dr. Grubb published his findings with the drug in the American Journal of Therapeutics (see Here).  Its not a treatment for everyone, its risky and reserved for those with more serious cases of POTS, but we're at that point. I'll let you guys know how that goes once I try it. More articles on the subject are available Here.

My health has continued to decline, I am still fainting 3-6 times a day, but now I am doing a lot less in that day. Fatigue has become a serious problem. For those of you who don't have POTS, EDS, or CFS, fatigue is not just being tired, it can be truly debilitating. Imagine you don't sleep one night, then run a mud run marathon whilst being chased by zombies, host a children's birthday party, don't eat for a day, and then jump rope for an hour. While this sounds silly, the fatigue really is irrational as well. I was awake today for two hours when I needed a nap, in that time I got dressed, went downstairs, heated up leftovers, ate, and sat with my dad to chat. In normal people, that wouldn't leave them brain foggy and tired. I have yet to find anything other than naps and keeping up with hydration to help with the fatigue. 

On the plus side, my wedding planning is going along smoothly. I still haven't figured out how POTS is going to impact my big day, but I have several months left before I know what condition I will be then. I'm crossing my fingers that I will be able to try the Epogen and that it will have a positive impact on my fainting and fatigue. Right now I am trying to keep an open mindset about the possibility of needing a wheelchair on my wedding day and how that might change my day. No matter what happens, I will be marrying my best friend and surrounded by ones I love, all will be fine.