Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Wednesday, January 11, 2006

...And Into The Fire

I've been on the reduced Lasix dose for three days, and it appears to have upped my blood pressure back to a semi-normal level. It's so great not to feel nauseous the entire day.

Unfortunately, the reduced Lasix dose has thrown my edema out of whack, as it is not big enough to manage the fluid that I leak into my body on a daily basis. Since Monday I've gained around 4 pounds of fluid. I'm not quite back to the stage where I'm hobbling around again, but if I don't do something, by next week, I will. I cannot relay how extremely frustrating this is for me.

Anyone who has had moderate to severe edema will tell you that the problem with having the edema is more than carrying the weight around. Swollen extremities can be painful, and are sensitive to the touch. It also throws off your circulation, so you are limited to sitting or laying in particular ways. Finally, it throws off your blood pressure, which sometimes can make you very moody. I know how it feels, and I am not going down the path again if I can help it.

So I'm doing something that I shouldn't be doing -- I'm getting back on the higher Lasix dose. There has to be a better way to manage all this medicine, and damn it, I am going to find it.

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