I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Sunday, August 16, 2009

August 15th

My sister is a married woman. The wedding was on Dauphin Island at the Estuarium. It was nice, albeit, a bit stressful at times. I suppose all weddings are. She did great, though, and had the time of her life. Was great to see her have such a lovely day.

I regrettably had a rough time. My feet gave out and I broke down in tears during family photos. We couldn't finish them and that really upsets me. Relatives brought me food, drink, and medicine. My brothers helped me walk and my brother's girlfriend wheeled me out to the car in a wheelchair when we left. I appreciated everyone's help.

While I have good days and bad days, I'm still in a full blown attack of Periodic Paralysis. I relapsed 11.5 months ago and have grown increasingly weak ever since. Docs don't know what to do for me, as all they see are the numbers on my bloodwork reports, which don't matter. It's not a numbers game, it's a transport defect. I can't say it enough. They just flat out don't understand the condition. Seems like nobody does except those who live with it, and it has been only through time, trial and error, and research. What it boils down to is that my muscles and nerves do not have the electrolytes necessary to withstand any kind of activity. It's like two equally charged magnets being put together...they don't work. They go opposite directions. And the harder you try to force the two magnets together, the harder they rebel. My muscles and nerves are the same. They function via electrolytes and without them, there's no "charge" so to speak. They literally depolarize and can't move. People ask me why I don't get a pain pump or physical therapy or other treatments, and I really don't know how else to explain that all of these things are not only irrelevant, but potentially dangerous. If you have a spinal injury and force your spine to move, you risk further damage. My muscles are in the same boat when I try to make them do what they do not have the ability to do. Without electrolytes to support and sustain the muscles and nerves, they simply can't work and forcing them to do so only makes the situation much worse. Pain is not the reason I'm disabled...it's the literal inability of my body to function properly. The pain is nothing more than a side effect...it's like having a charlie horse in the entire body and at times I feel like I am going to die.

The judge told me at the ceremony that I'm too young to be dealing with such a disability. No kidding, but no one should have to live with it, regardless of age. I usually try to take it in stride, but lately, I'm just sad and tired and I don't want to be like this.

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