Monday, November 19, 2012



If you talk to me online, there is a fairly good chance that I'm in this position. This has been a daily occurrence for about a year and a half now. I thankfully have a laptop that sits beside me in bed 24/7. When I'm too weak to sit up but cannot sleep, I lay on my left side (less strain on the heart) and read/blog/tweet/facebook with a couple of fingers. I'm in the dark in this particular photo because lights are sometimes unbearable. Today was definitely one of those days.

From The Archive: "Welcome To The Freak Show"


I thought I would share a blog entry from my archive (on another journal). I imagine everyone with HKPP and other systemic diseases can relate well to not only the obvious battle, but the battle within. Thanks for reading, and comments are always welcome.

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From physical and mental to financial and time-wise, this is a challenge in every way. I feel like a juggling Guinea pig in a circus freak show (where you at, Ripley's?) who returns to her cage when the act is done. And this juggling Guinea pig has over a dozen acts a day, because the Ringmaster thinks she's qualified to handle the workload.

I am not qualified today. Or this week. Or this month. In fact, I'm not sure I'll ever be qualified for this.

Five years ago, I was an executive office administrator in the corporate world, working two jobs seven days a week and still managed to take online college classes and do charity work on the side. I took one pill a day and one shot every 11 weeks. Although I was still recovering from a severely separated knee caused by an incident with post-Katrina debris, I appeared to be in a reprieve from the Periodic Paralysis. I didn't take it for granted. I seized every day as if it were my last. I did the best that I could.

The Periodic Paralysis reared its ugly head again, and I found myself flat on my back at the end of 2007. I had to resign from all jobs, and I was back to the drawing board. Weaker, but determined.

I didn't give up. I redefined my life. I threw caution to the wind and ran off to Florida, where I trained and certified to teach Bob Ross painting workshops. It was the craziest, riskiest, most spontaneous thing I've ever done. It was also the most incredible, amazing experience of my life. I returned to the Gulf Coast and began teaching for very little income, but I was happier than I had been in a long time. Summer of 2008 brought forth another spontaneous decision - going back to college full time. I dove in head first. Two weeks in, I landed in the hospital and had to have two kidney stone operations, missing almost a third of the semester. One of my teachers told me that I was an academic goner and suggested I withdraw.

But I didn't give up. I worked night and day to catch up, and I walked out of there on the Dean's List.

I continued teaching, going to college, and helped launch a wonderful non-profit called Art With Heart. My vision of getting my Fine Arts degree, bringing Art Therapy to the Gulf Coast, and eventually qualifying for foster parenting was finally becoming possible. Then my body began to weaken again, and I saw the inevitable. I went to doctor after doctor, and warned loved ones about what was happening. Nobody took me seriously, even after I had to drop my Art courses because I was too weak to handle them.

But I didn't give up. I was devastated, but I dropped my Fine Arts major and continued college strictly online. I surprised myself by choosing Psychology, and kicked some unexpected, unprecedented butt. Perfect score. I found my academic niche, and ran with it. The new goal: Troy University's Psychology/Social Studies Post-Secondary Education Masters, with Bob Ross instruction and art therapy in the plans as volunteer work on the side. I had a real goal again, and was so excited.

April 9th, 2011, my world came crashing down when my body went into a full paralytic episode following a painting workshop. I was mistreated by the hospital staff, resulting in multiple episodes and a drastic nosedive in my condition. I never fully recovered, my doctors have declared me permanently weak, and life has been a roller coaster from hell ever since.

At the horror of those around me, I refused to give up on college. I continued online, propped up on pillows in bed. I couldn't complete some of the assignments on time due to episodes and hospital visits, but my instructors made accommodations to extend deadlines, and I finished strong. When I was forced against my will to drop out of college this year, I left with a 4.0.

And now, my life is this. One pill a day has become an overwhelming list of crap that I have to write down to remember and borrow money from relatives and charities to pay for. Some days are better than others, but overall quality and all future plans are out the window. Some days, I can't swallow well enough to take all the meds. Some days, the side effects are worse than the symptoms. Some days, I take the meds and they flat out don't work. Some days, it would just be easier to give up, because I am absolutely not qualified for this.

But then I am reminded of everything that I once strove for. I am reminded of all of the people, young and old, that I have mentored and counseled to never stop hoping and never stop trying. I am reminded that I don't deserve to talk the talk if I'm not willing to walk the walk. I am reminded of who God is. I am reminded of who I am. I may not have much or be much, but one thing I know for sure - I don't give up.

I may not be qualified for this act, but with everything in me, I'm gonna keep juggling.

Update...From A Big Chicken

The Big Chicken!!! Located in Marietta, GA

Why, you ask? I thought it was appropriate, because I am one. After the nightmarish side effects that nearly landed me in the ER overnight last Tuesday/Wednesday, the doc and I agreed to cut my dosage of acetazolamide in half. Except I was too big of a chicken to do that, so I cut it in quarters instead. I went from 500mg a day to 125mg a day, and now I am going to slowly work my way back up to 500 if my body adjusts to the side effects. I have a nagging headache and I'm still dizzy, but not as bad as I was the other night by any means. I am trying my best to put on my big girl panties and deal with it.

I am encouraged that my muscles have not gotten worse. I feel it's a possibility that I am finally on the right track with treatment. I do have to make sure I stay on top of my med schedule...especially the potassium...but as long as I do that, I usually have several hours a day where I can function with the assistance of crutches or a walker. I still crash every day over something...usually muscle activity, weather, or sleep/lack of sleep, but I have to give the acetazolamide time to do its thing. Hurry up and wait is the name of the game, as it so often is.

I thought this might be a good time to list all of the meds and supplements I am on. Each one will be hyperlinked with more information.

acetaolamide (DIAMOX) - titrating from 125mg to 500mg a day, if I can manage the side effects
potassium bicarb/citrate (EFFER-K) 25mEq PRN - up to 3 a day
B12 5000mcg - the Wiki article says B-12 supplements aren't necessary for those who experience low bioavailability due to potassium intake. This article is why I disagree. I think all who take high doses of potassium should seriously consider a reliable B-12 supplement.
Omega Oil 1300mg
Vitamin D 50,000 IU (weekly)

I'm so tired of pills. Words cannot express. Gotta do what I gotta do, right? Quality of life is the goal...always has been and always will be. Keeping my eye on the prize.

Wednesday, November 14, 2012

Acetazolamide: Rough Start

I started on acetazolamide, as I mentioned a couple days ago, and the last 36 hour span has been a bit of a nightmare. My muscles have not declined...I want to make that clear. In fact, I've had moments where I felt for a minute that they were a tiny bit less heavy than usual, which is encouraging.

However, the side effects from the drug have been nothing short of brutal. I felt like I had been stabbed in the head...it was one of the worst migraines I've ever had. The nausea and dizziness were equally troublesome. I pulled a muscle in my back grabbing hold of the kitchen counter to keep from falling. I almost never cry over my symptoms, but tears were shed and I nearly had to ask to go to the ER overnight.

In talking with quite a few patients about it, everyone told me the exact same thing: my body was being ransacked by this drug...that I was starting on too high of a dosage. They said I should have started on a smaller dose and slowly worked my way up to the intended dosage over a period of weeks. They suggested I call my doctor, so I spoke with his nurse this morning and told her what was happening. I received a call back from Dr. Fulop, and he agreed that I should cut the dosage in half and slowly work my way back up. I think he is a bit frustrated with me, or with the situation, but he seemed encouraged that my muscles were not doing worse in spite of the horrible side effects. I'm so grateful to Dr. Fulop for not giving up on me. He is truly one of the best doctors I've ever had.

So in summary:

Acetazolamide 250mg twice a day made me feel like I was dying, bringing me to the conclusion that 500mg a day is not a good dosage to start with. Doc agreed that I should break the pills in half and take 125mg twice a day for 2 or 3 weeks. I'm supposed to call him with an update, then we will decide whether or not to up it to 500mg again.

I'm still on all of my other medications in addition to this. I will post a separate blog entry with the entire list, and comments will be open here if anyone has a question.

I'm off to start the new dosage. Wish me luck...

Tuesday, November 13, 2012

Starting Acetazolamide


My bedside emergency station:
a couple of types of potassium, coconut water, almonds, pistachios, and lots of water

I'm beginning Diamox for the first time. It's very risky, as those with HKPP are aware, with only 46-50% of patients reporting improvement. Half the patients I've spoken to personally have said they are doing much better on it. The other half said they saw a decline in the form of Hypokalemic episodes or acidosis with kidney stones. God knows I don't need any of the above (I believe 40 stones is enough in one lifetime, thank you), so here's hoping and praying that I turn out to be one of the lucky ones. I'll keep you posted.

Wednesday, November 7, 2012

November Consult in Jackson

I went to see my Nephrologist/Internal Medicine specialist yesterday at University of Mississippi Medical Center in Jackson. Dr. F is a gem, I consider myself very lucky to have him in my corner.

He admits to being baffled by my condition, but we had a laugh about it and it made me grateful that he hasn't given up on me in spite of not seeing the improvement we had hoped for. It's funny how I always go in there wanting to crawl into a corner and cry, but I leave feeling better even though things haven't improved. He told me he believes in his heart that I will be well again, and I appreciate that. I've been very down about my condition, to say the least, and it helps to know that one of my doctors has faith in my recovery.

I will be starting a trial of Diamox in addition to all the other meds I'm on. This drug works for some patients, but makes things worse for others. Worse is dangerous, but of course I won't know which category I fall into unless I try it. People with HKPP have no choice but to be Guinea pigs, because the treatment and symptoms vary so much.

Wish me luck, and I'll keep you posted.