Wednesday, August 25, 2010

More August Symptoms

Just keeping a record of what's happening...going to eventually go in a file for the MDA (when they finally return my messages...sometime this century would be nice):

The heat and humidity is making me very sick. I can't be outside or drive very far without becoming short of breath, light headed, dizzy, and weak. I've almost driven myself to the ER twice while driving home from Gautier (35 minute commute). I'm having to stay indoors as much as possible. Must get a car with air conditioning ASAP. This is not a luxury, it is a necessity.

I'm still crashing daily and having to lay down often. I believe my potassium levels are fluctuating constantly due to 1. The ungodly heat 2. My IBS which is giving me trouble 3. My fluctuating pH 4. Any activity...ANYTHING...household chores, grocery shopping, standing or sitting up for too long...it's all affecting me tremendously right now. It's a good thing that my fall classes are online this semester, because I would not be able to be on campus right now.

My pH is still fluctuating in the 6's. I just ordered some sodium-free alkalizing drops to put in my water. I hope it will be the kicker in bringing me back into the safety zone. At least that will be one battle won. I'll report back once I start using the stuff.

I am having significant muscle spasms again, including charlie horses in my legs. My neck muscle (the one I strained in December that sent me to the ER throwing up and blacking out) is acting up again as of last night. It is the muscle that starts at the back of the head, goes down the neck to the shoulder blade...don't know what it's called. But when it contracts, it is like a charlie horse in my neck. I can't see or move my head, and I feel like I'm going to throw up. I took a muscle relaxer and anti-nausea to try to ward off another ER visit. So far so good, but it's been giving me grief all day and is still doing so at the moment. Will have to talk to a doc soon about this as it is not entirely safe for me to drive right now but don't have a choice.

I've contacted the MDA again about getting advocacy for disability and proper medical care, and once again, no returned phone call. They have not acknowledged me whatsoever since I started leaving messages for them months and months ago. I've even called various regional chapters, and nothing. Thanks a lot, MDA.

I am having to function in spurts. Put a load of laundry on, paint a few minutes, lay down, cook, eat, take meds, lay down, wash a couple of dishes, sit down, catch up on email, have a snack and take meds, lay down, get up and wash a couple more dishes, lay down. My best times of function is when the potassium has peaked in my system, but it's not keeping my levels stable and I crash again. There are days when I can only sit up and read...no cooking, cleaning, or painting. There are days when I function fairly well and I work like a mad woman to get things done. Most days I have to choose between tasks...do I do laundry today or clean the kitchen? I can't do both. And on days that I teach, I crawl out of bed, go teach, come home, and crash for two days. It takes every ounce of strength I have to make it through a class, and my students are having to help me set up and clean up the room. They are concerned about me as they have seen my decline. I've told them that I will teach as long as I am physically able, and I am very grateful for their help and overwhelming support.

I went up to the college the other day to pick up my textbooks, and the line was too long. I couldn't stand there, so I had to leave. I stopped for a minute and talked to a student who was standing in line, and when I told her that I switched to part time in school, she yelled "THANK GOD! You were KILLING yourself!" Even though she only saw me once a week two semesters ago, she had clearly noted my decline and told me several times that I was trying to do too much. She's right, but I feel the need to constantly prove myself to those around me that I am trying. Even though it's pretty frickin' obvious to those who are actually paying attention. If I wasn't trying, I would not be showing up to teach a painting class every week, on my feet, with half a dozen pulling muscles while sick to my stomach, weak, exhausted...and I sure as hell wouldn't be killing myself in my fourth attempt to make it through college. Thank you.

That's all for now. I can't sit up anymore.

Tuesday, August 24, 2010

I'm alive.

Sorry I've been on hiatus. I've been busy. And sick. It's a constant roller coaster as usual.

Two things I have been working on:

My Bob Ross business blog at http://gulfcoastartworks.blogspot.com

AND

My new art portfolio at http://gulfcoastartstudio.blogspot.com


I started back to school already...the fall semester is nothing but American History online. I'm pretty sure I'm gonna kick butt and take names, being a history nerd and all. It will be the easiest semester of my life.

MANY blog posts in the plans...just have to find the time to get them done. I'm about to bombard the blog world here on ugottafriend.com. Stay tuned.

Wednesday, August 11, 2010

August 2010 Health Update

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/


Health Update:

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!

SCREWED.

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. :)


The Meds:


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

Sunday, August 8, 2010

The College Chapter of Life

Two previous blogs to bring new readers up to date:

November 2009 - All Things Work Together For Good

February 2010 - I'm Gonna Miss This Place

So now, I have finished the summer semester at MGCCC and my final drawing class. I will take two history classes in the fall (it will be the easiest semester of my life) and contemplate what to do next. I'm at a crossroads again for health and financial reasons, and I don't really know where I'm headed. I'm praying that whatever I end up doing, that it will be the right decision.

As for my last day of school on Friday, it was quiet and uneventful. I worked on my final which had to be turned in for grading. It is unfinished but due to the semester being so short, my teacher graciously graded everyone's finals based on the work that was done, knowing that we would finish them eventually. I've put around 40 hours into the piece already, and I am so happy that it has turned out pretty well so far. I hope that I don't screw it up when I put in the last 15 or 20 hours.

There were only a few of us in the room that day, and our teacher's visit was very brief. He walked over to my table, looked at the project, and said "That's so cool".

He's lucky I didn't cry on him.

A few minutes later, everyone left as I wrapped up my incomplete drawing as best as I could. I packed up my stuff and put it away (will go back next week to pick it up along with my project), and then stopped and sat down back down for a while. I burst into big fat ugly tears and thanked God for allowing me to be there for the past year. I prayed a blessing over the place and the people that I grew to know and care for. I prayed for God to guide my classmates as they move on. I asked God to bless my teacher and his family in every way. I prayed out loud. That isn't something that I often do, but I felt lead to do so and being completely alone in the studio gave me that opportunity. As I turned out the lights and shut the door, I cried my guts out and thanked God again for giving me this experience and for helping me to finally make it through the Drawing and Design classes at JC that I had dreamed of since I was a teenager at Pascagoula High School.

I remember going to the college many times over the years, looking in the window of that studio and wishing I could be in there...wondering if it would ever happen. Finally, over 12 years later, I was there. Living the dream. It was incredibly hard at times, as I knew it would be health-wise, but I tried my very best and I hope that I've somehow made my friends, my family, and my teacher proud.

I'm overwhelmed. Relieved. Sad. Exhausted.

And more grateful than words can say.


A cluttered mess of art supplies in my house = Hundreds of dollars
Four semesters of college = Thousands of dollars
Three surgeries during two of those semesters = Tens of thousands of dollars
The places, the people, the experience, and fulfilling a life-long wish of learning how to be an artist in spite of financial and physical disability = PRICELESS

May I never stop learning for the rest of my days.