Friday, November 20, 2009

Life With Periodic Paralysis

People have asked what is wrong with me, so I decided to commit a few blog entries to the list of conditions that make up my life with systemic disease. Systemic disease is actually a group of diseases, each affecting different systems of the body and eventually resulting in organ failure. Common systemic diseases are Multiple Sclerosis, Lupus, and Juvenile Diabetes. There are so many conditions out there, it will make your head spin. Just Muscular Dystrophy alone has approximately 40 types. If that's not overwhelming, I don't know what is.

One of my primary conditions (and most prominent at the present time) is a rare form of Muscular Dystrophy called Periodic Paralysis. It is a channelopathy, meaning that vital substances (in my case, electrolytes) transfer inconsistently in and out of muscle cells. I have the Hypokalemic form of the disease. Sadly, it has never once been understood by any doctor that I've seen. All mistake it to be Hypokalemia, which is a true lack of potassium in the blood. What I have is not a true lack. The potassium is there (in other words, my bloodwork is normal), but it's not in the right place. Therefore, my muscles do not have the correct electrical charge necessary to function properly. It's like trying to force two of the same magnets together...they don't come together, they rebel. As do my muscles when they are trying to function without the necessary balance of electrolytes. They rebel, and sometimes depolarize, which is crippling and can be fatal. It is also excruciating. Imagine a charlie horse in the entire body, and that is how I feel when I am in the midst of an attack of Periodic Paralysis. I've been in a chronic relapse of Periodic Paralysis since September of 08, with acute attacks happening regularly. It has been a significant nosedive and I appear to be continuing to decline. There are a ridiculous amount of triggers of HKPP's acute attacks, including weather conditions, stress, heat, cold, eating, not eating, physical activity, standing or sitting still...the list goes on. The trigger this week appears to revolve around eating. I can go for a few hours without eating and have an attack, or I can eat regularly and have an attack. It's one big catch-22. I never know what to do and never know what's going to happen when I do it. It is a painful, frustrating, never-ending roller coaster.

Due to my decline over the years, I have chronic muscle atrophy and I have become very breakable. All I have to do is move wrong, sit wrong, lay wrong, breathe wrong...it takes nothing for muscle and cartilage to pull and tear. It is agonizing, and injuries as far back as the early 2000s cause me great pain to this day. I hurt from head to toe 24/7/365. I never escape it, even in my sleep.

HKPP greatly affects the smooth muscles, which includes the lungs and heart. I don't breathe normally and I have heart problems (currently in Hypertension and Tachycardia, in fact...trying to get it under control). It is absolutely, positively EXHAUSTING. I can't even put into words how exhausting it is to live like this day after day. Physically and otherwise. It is disheartening, and I'm tired. I am so, so very tired. I'd give anything to be "normal". (Critics, you might as well not even bother preaching to me about that last sentence. I refuse to sugar coat this...I'm keeping it real. Deal with it or move on.)

All I can do is be honest and speak from my heart. At this moment, I am just so freaking tired. Nevertheless, I am blessed. I wish things could be better, but I am grateful that it's not worse. Because I know it could be. I will never, ever forget that. I don't take God's mercy for granted.

I'll write about my other conditions soon. Thanks for reading.

4 comments:

sarah bess said...

Your description of an attack as a whole-body charlie horse really gave me a clear picture of what you go through. I didn't realize it was as constant as it is, either.

God bless you, K. Praying from my corner of the world.

Too Many Hats said...

The fact that you do anything "normal" with those flare ups is amazing - I think you do more than many "normal" people do - you do school and charity work and your art classes.

Krissy said...

Thanks for positing this K, I really appreciate what you go through and am so sorry that you have to deal with this. *hugs!*

Rodney Robbins said...

Dear Kelli,

You say your whole body hurts from the HKPP? Been there. Done that. When the muscles hurt all the time, it's usually a sign that a possum (a person with Hypokalemic Periodic Paralysis) needs more potassium (and sometimes a sign that she needs some magnesium to make the potassium "work").

Most hypo possums will need at least 50 mEqs of K-Lyte to come out of an attack--25 mEqs usually won't bring them all the way back. If 50 mEqs won't do it, it is reasonable to try adding some magnesium-malate from the health food store--1-2 tablets per day for a while. If a possum has low magnesium, the potassium just dosn't work as well.

WARNING

That much potassium all at once would be bad for anyone who does NOT have HKPP! This suggestion is for possums only.