I'm aggravated that my internet connection is unstable and I still can't upload my videos about Hypokalemic Periodic Paralysis. Eventually I'll get them on YouTube and post the links all over creation. The more the word gets out, the more doctors and the general public will understand this condition.
Three great blogs about Periodic Paralysis that I've recently run across:
Benita at http://periodicparalysis.blogspot.com/
Thomas at http://disjunctions.blogspot.com/
Wade at http://theaudiopilotsblog.blogspot.com/
My pH is stuck between 6.0 and 6.75. Much better than the 5.0 and near hospital visit that I was facing 7 months ago, but still not exactly where it needs to be. So close though...so close. The magic number is 7.0, with the most ideal number being 7.25.
My flank/UT pain comes and goes, and lately it has been very minor compared to several months ago. From December to May I know I passed some sediment and at least one stone...possibly more. Soooo thankful that I didn't end up wailing in the emergency room this time around, and hoping there are no more stones present. I do still have pain and the occasional kidney spasm, which is not a good sign, but I'm trying to ignore it because there's nothing I can do about it. As of right now, the torn cartilage in my chest and pulled muscles in my neck and back are numero uno in the pain department, by a MILE. Just when I think it's getting better, I sneeze, cough, laugh, or move wrong and it's as if the injury just happened again...takes very little to aggravate my chest and back and I'm still living on a heating pad when I'm in bed. I can't get in any position and be comfortable, as usual.
I have had chronic pain and weakness for exactly 20 years this month. I believe it is permanent at this point (based on HKPP facts), but some days are a little better than others. I am still having daily HKPP attacks revolving around this ungodly heat (100+ degrees, 100% humidity = sauna), any physical activity, and in between doses of K-citrate. I still don't appear to be on enough K as it is not staying on top of the pH or the Periodic Paralysis. As I said, I have improved a lot compared to 7-8 months ago, but I am still not in good shape and have a long way to go before I am officially in a stable "maintenance" mode again. I pray for that day to arrive.
I'm having significant issues with paresthesia in my arms and hands lately, to the point that I can't feel them very well, and when I do, it's like bees are stinging me. My arms and hands as I am typing right now feel like they're being stung. I have no doubt that 5 weeks of drawing classes have been a factor, as it became progressively worse as time went on and by the time I reached my final project (color pencil, 40+ hours into it and still another 15 or 20 to go), I was to the point of tears at times from the pain and numbness. I feel like my arms are being pulled apart. My hands feel like they are moving in slow motion, although they don't necessarily appear to be, but it feels that way...kinda like moving my hands under water or through mud. It's odd to describe, but I know a lot of people (not only with paralysis, but diabetic neuropathy, M.S., and other neuromuscular diseases) can relate very well to what I'm saying.
Migraines have reduced significantly since eliminating diet sodas and having uterine surgery in January. I have one every once in a while, but I probably haven't had more than a dozen this year, and that is huge considering that I was having them on a weekly basis before. Of course when I do, it knocks me flat on my back in bed, but that is to be expected. I'm just glad they have lessened.
My IBS is back in full force. Trying to figure out the reason for that, other than stress. Food is really the only other factor, so it's a daily game of Magic 8 Ball. "Will I be sick to my stomach today?" asks Kelli. *shakes the ball* "Probably..." says the little triangle. Ok so I don't actually consult a Magic 8 Ball, or even own one for that matter, but I saw the scenerio in my head anyhow. Guess ya had to be there. Anyway, IBS and Periodic Paralysis definitely do not mix, as my body wastes electolytes already, so this is kicking me while I'm down. Gotta figure this out pronto.
Diet is a bizarre thing, and as I've recently ranted, a Catch-22. I'm supposed to be on this diet and that diet and another diet...something different for each condition that I have. Well guess what...it is not possible. I repeat...NOT...POSSIBLE. I've done endless hours of research and tried it first hand, and it is just flat out not possible to be on a low acid, low oxalate, high potassium, low carb, low sugar, low sodium, moderate protein diet. So I'm screwed. I have to choose between them all. So I am currently spinning plates in a circus...low sodium here low sugar there but oops don't eat that it's too acidic oh wait I can't have that either because it's high in oxalate oh yay a high potassium food but DARN IT ALL TO HECK it's a heavy carbohydrate!
That is all.
On a happier note, I am approximately 4 1/2 lbs from my new goal weight. After factoring in the amount of fluid that my body is forced to retain via electrolyte therapy (read: water weight), I don't have that far to go before I reach a reasonable average size 10 again (in the waist, not the chest unfortunately). Thank you, genetics, for giving me the build of a football player. And by the way...you suck.
Gotta throw a little humor in there sometimes, you know. For sanity's sake. :)
Avapro 150 mg once a day
Potassium Citrate 1080 mg 3 times a day
Slow Mag w/Cal Chloride OTC at night
Flexeril 10 mg at night (sometimes replaced with Valium if the pulled muscles are unbearable, but that is a temporary prescrip)
Benedryl OTC, one a night when I remember
And that's all she wrote. I have Tylenol 3 on standby for migraines or (GOD FORBID) another muscle pull/tear. I hate pills and do not take pain meds unless I am crying or involuntarily moaning in pain, which is a rarity because I'm darn stubborn (BELIEVE IT OR NOT)! Nearly all the pain meds in my possession are expired or close to it, if that tells you anything.
And finally, as tired as I am of paying doctors to teach THEM about how to treat HKPP, I meet with yet another new internal medicine specialist on Sept 8th. Maybe I'll get lucky and he'll actually read the info I give him, comprehend it, and listen to the words coming out of my mouth. Treatment for HKPP varies greatly from patient to patient...it is a constant dance of symptoms and there is no one solution. I have been more right about my own treatment than ALL of my doctors combined. Because guess what? I have lived with this truckload of lemons for 20 years, and whether ya like it or not, I know about my specific condition(s) and how they affect MY body more than anyone else. Doctors and all other intelligent beings on planet Earth, take note. And please pass the mineral water, 'cause some lemonade is gonna be made from this if it kills me.
But it won't, 'cause it'll be sugar free. :D
Thank you and good night. <3