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.