Saturday, January 24, 2009

The scoop on Periodic Paralysis

So yes, I've been having "attacks" of Hypokalemic Periodic Paralysis again. I was diagnosed in 1998 when I fell completely crippled and spent two weeks in the hospital. I am able to use my arms and legs at the moment, thank God, but it is very painful and something that I had to address quickly or I would no doubt land in the hospital again. Went to the doc today, where I was prescribed several things including a "critical" prescription for potassium chloride that my pharmacy had to fill asap. Potassium chloride sounds harmless enough, but in all actuality, it is what is used in lethal injection. Potassium is an electrolyte that controls all smooth muscles, including the heart. If you have too much, you die. If you don't have enough, you die. But first you suffer in agony with muscle paralysis, which is what I am occasionally faced with. In my case, although I have enough potassium in my blood stream, it is not being transferred into my cells to be used for muscle function. It is merely a slow leak into the cells, so my muscle function is very weak and has the potential to stop altogether. When the smooth muscles become paralyzed by lack of electricity (or too much in the case of lethal injection), things like breathing and swallowing are not possible. Neither is heart function. So...there's your science lesson of the day.

I'm back on potassium chloride daily. It's about the mEq. of 850 mg, if I'm not mistaken. Whatever my cells don't accept are eventually flushed out by the kidneys, except for the fact that I'm on a potassium sparing blood pressure pill. Oops. No biggie though. The doc is aware, and it is something that I will have to keep an eye on.

Other plans for keeping HKPP at bay: No exercize whatsoever, and a very low carb, low sugar diet. That's doable. Except that I'm also supposed to be on a low cholesterol and low protein diet. Yeah, not possible to do all of the above. I've checked. So I get the pleasure of CHOOSING. Save the muscles, thus saving my life...or save my kidneys, thus saving my life. Choices are usually a good thing, but in this case, it kinda sucks.

I choose to save my muscles, because uncontrolled HKPP is certain death, and it is incredibly painful. Imagine having a charlie horse in your entire body. That's pretty much what an attack feels like. It is in no way tolerable or acceptable, so I will do everything in my power to prevent it. As for my kidneys, they are currently functioning well despite the stones, infections, and recent obstruction resulting in surgery. Protein is often partially responsible for stones, infections, etc., therefore any kidney doc in their right mind would tell me to limit my protein intake in order to keep my kidneys from eventually self-destructing. But I can't, because there would really be nothing left to eat. And not eating leads to more HKPP attacks, as some of you read HERE. So...compromise is necessary.

The link on Wikipedia is one of the best explanations of the condition that I've read online. They acknowledge a lot of symptoms that other "medical" sites don't, and I think that's important. The word needs to get out about this condition. I spent eight years of my life in agony being mistreated by doctors, family, and "friends" who claimed that I was crazy, exaggerating, faking, a hyperchondriac, etc. I lived a sad existence because of that. Many of those people, I've gone back to and made my condition known. One person apologized. The rest had too much pride.

But my teenage years are behind me now, thank God, and I've made it to 30. It's still hard to believe that I'm telling people that I'm in my 30's now...I almost want to say 29 and holding (LOL) but at the same time I know that I am very lucky that I made it this far. There were so many moments when I could have dropped dead. So many. You just don't know. But God chose to sustain me, and I have to believe that there is a good reason for that. So I embrace my 30-ness, and in two months, I'll celebrate 31.

I guess that's all for now.

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