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

Thursday, April 21, 2011

Periodic Paralysis Update

I've been wanting to write, but words have not come easy. It has been almost two weeks since my serious crash, and I have not recovered. I have seen little improvements here and there, and I'm grateful. My heart rate fluctuates a bit but is pretty much stable. I can get out of bed and walk to the bathroom that attaches to my room...it's only a few steps from my bed, but it's a start. I've also been using MawMaw's walker to go to the kitchen (alllllll the way on the other side of the house) at least twice a day now. I've slowly been maneuvering around the kitchen hanging onto stuff, and even sat in a chair and loaded the dishwasher the other day. Took forever and resulted in a rough night, but I did it. Still more dishes in the sink to be washed as soon as I can use my muscles well enough to do so. At the moment, it seems that every little thing is a trigger that causes me to decline again. Standing, lifting anything (including arms and legs), sitting too long (sometimes I just fall over on my bed...who cares what position I end up in, as long as I can sleep to escape for a while), weather, eating, not eating, taking a shower, not sleeping, sleeping, changing clothes...seems like everything is against me and the simplest of functions have become grueling if not impossible. I may not be able to do much of anything, but I'm a far cry from two weeks ago when I could move nothing but my head and neck, had a cath, and was butt naked in front of nurses and God knows who else in an ER hospital bed. Believe me, I'm not taking the fact that I can sit up in bed unassisted, go to the bathroom, and use my fingers to type for granted at all. Praise the Lord.

But this is definitely a very slow progression. I improve slightly for short periods of time, then decline again. I can feel a difference, but it's as if more than doubling my potassium intake is still not enough. My body is just not winning this fight, but I'll never give up.

After what...a year(?) of trying to get the MDA's attention, I finally have it now. I have an appointment at the MDA clinic in Jackson in 3.5 weeks. Much sooner than I expected, and I'm thankful for that. I talked with the coordinator for several minutes about my situation, and she was encouraging. I hope what she says about the doctor is true. I've heard nightmare stories about HKPP patients being untreated and mistreated even by their regional MDA docs. Unacceptable. I brought it up and the lady assured me that this doc will know how to treat Hypokalemic Periodic Paralysis, and is better than the average neurologist. I just pray that this is the case, because my condition has become too serious to be misunderstood or not taken seriously. I will die. I need help. I can't live in bed or in a wheelchair unable to care for myself. I have Facebook support groups who have been incredibly helpful. I have relatives putting a roof over my head and buying my groceries...I am so grateful...but they are tired and I am tired and I can't live like this. I have to be able to walk, drive, work, support myself. What other option is there for a single woman? Being independent is my life goal, and has been since I first became ill all of those years ago. So far, it has not happened...but it has to somehow.

For now, it's an hour-by-hour thing. I'm trying my best. That's all I can do. I guess that's all any of us can do, right?

I appreciate the prayers and well wishes that I have received more than you know.

Wednesday, April 13, 2011

Serious Periodic Paralysis Attack

I had a serious episode of Periodic Paralysis after my workshop last Saturday night. I had heart arrhythmia and ended up in the emergency room unable to move from the shoulders down. I have partial use of my arms again and can sit up most of the day, but my legs are still paralyzed.

I will write with more details later, but wanted to let readers know what was going on.

Thank you for your prayers.