Thursday, November 29, 2012

If I had won the lotto

Had you won last night's huge lottery, what are the first five things you would have done with the money?

I would have compensated and/or paid back the family and friends who helped me when I needed it most

I would have gotten out of debt, forever

I would have ordered a small, custom-built Zook cabin and put it somewhere on the Florida Coast

I would have returned to college online for a kick-butt PhD

And I would have bought everybody a water buffalo. :)



That's my lead-in to encouraging everyone to consider charitable giving this holiday season, in addition to or in lieu of the newest popular thing or stocking stuffers that may very well end up collecting dust in a closet. I strongly believe that if you're going to invest in something, make it count.

Thanks for reading.

(Cross-posted to my charity blog)

Saturday, November 24, 2012

Minecraft Lego Set Charity Auction!

Hi everyone! I hope you had a Happy Thanksgiving. Welcome to the official start of the holiday season! I just put something really cool on eBay...please check it out and share with anyone who may be interested!

I recently won a limited edition Minecraft Lego Set during a gaming marathon for Child's Play Charity. I have decided to auction it with 100% of the purchase price to benefit Child's Play! This set is currently sold out at Lego.com, hard to find in stores, and is selling for $75-100 on eBay at the moment. Bid high and help give toys and games to children's hospitals this holiday season!

And here it is! http://www.ebay.com/itm/150953966153


The auction ends in a week! PLEASE SPREAD THE WORD!

Wednesday, November 21, 2012

2012 Bucket List

It's been 2.5 years since I've updated my bucket list. Now I have it on Pinterest! I didn't really change much despite the fact that I don't have the health for most of it. That doesn't make me want it any less.

Bucket lists are trendy, but I have had one for years and I take it seriously. I put much thought into what goes here.

I've opened comments for the first time in a long time! What's on your bucket list? :-)

Monday, November 19, 2012

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.

acetazolamide (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

HKPP Diamox/Acetazolamide Treatment: Rough Start

I am so grateful for the Hypokalemic Periodic Paralysis support groups on Facebook and the email Listserv. They have truly been a life-saver. I spent so many years alone with this disease, being disregarded by everyone, but now I have a group of dozens around the world going through this battle with me. There are a couple of physicians who specialize in Periodic Paralysis running the Listserv, and I have received a wealth of information from them as well. We are all learning from each other every day, and I have no doubt that I'd be a dead woman if not for finding this level of support. Thanks will never be enough.

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, and I hope he never does. 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 on the HKPP blog 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 here and on the HKPP blog.

Friday, November 9, 2012

Friday Funnies: Misheard Lyrics


I am notorious for this! I was cracking up in the car just the other day, in fact, over singing to the radio and getting a line hilariously wrong. Reminds me of all the funny misheard lyrics sites out there. Enjoy.

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. Fulop 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. Can I keep him?

Dr. Fulop is a bit scared of the idea, as am I, but 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. He told me to promise that my family will supervise me and get me to the ER asap if I feel any kind of attack coming on (not that the ER will do anything for me). So, this is a risky move.

People with HKPP have no choice but to be Guinea pigs, because the treatment and symptoms vary so much. As far as I'm concerned, I have nothing to lose. I don't want to live like this, so if there is any chance of a treatment working in my favor, I'm going to give it a shot in spite of the risks.

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

Monday, November 5, 2012

Guess Who I Met Saturday?

Remember THIS POST from a few months ago?


BAM!!!!!!!!!

I had the privilege of supporting Martie Duncan and several of the Food Network Star finalists, including the sweet and fabulous Emily Ellyn, at a cook-off in Gulf Shores this past weekend. Still waiting on the rest of the pics from my uncle, but I'll share the details of this epicness soon!

The Painted Bra Art Project Results


I am so happy to report that my TARDIS bra was SOLD! Much appreciation to the person who purchased it! Thank you for supporting the Liz Hurley Breast Cancer Fund.

I look forward to next year's project!

EDIT NOTE: I just received an email that my other bra, "To Infinity and Beyond", has also been purchased! Woohoo!!! Thank you sooooo much!