Wednesday, March 28, 2012

Pink Heart Funds

This week has been tremendously better than the last, and I'm very thankful. I am somewhat functional. I wasn't able to do anything on my was a very rough day physically and for a few minutes I thought I might find myself in the emergency room. So glad I managed to avoid it. I did miss a very important Algebra exam, but my wonderful teacher offered to extend the deadline. I am a lucky dog.

Saturday was productive. I got dressed sometime that afternoon and drove down the road a bit, and as I started to sweat profusely in my car (help y'all, it's only March), I decided it was time to chop the mop.

So this...

...has gone bye-bye. It is now in a bag, and will be taken to Pink Heart Funds. I hope they will be able to use it to make a wig for someone who has cancer. The great thing about Pink Heart Funds is that they take any type of hair. It can be processed, gray, permed, doesn't matter as long as it's at least 8 inches. I was surprisingly able to donate around 10 inches, and my hair is still covering my neck.

Short hair is not really my thing. My mom and stepdad absolutely hate it, ha! But what a small sacrifice...a no-brainer as far as I'm concerned.

Anyway, if you've been interested in donating your hair and other cancer charities won't accept it, I hope you'll contact Pink Heart Funds. Great people with a great mission!

Tuesday, March 20, 2012


It has been very hard lately. Physically and otherwise. I guess anyone who has been paying attention is aware of that. Being debilitated is not only difficult on the body, but the soul as well. Life is one big emotional...well...roller coaster. Ha. As always, I named the blog right.

In looking at past entries, I've noticed that in one post, I said I was handling things pretty well and I wasn't depressed. That was true. The next post, I was not coping well at all. That was also true. The fact of the matter is that there are a lot of ups and downs. Days when I think "Ok, I can do this, I'll make it somehow", and days when I absolutely, positively cannot by any stretch of the this.

I'm sure I'm far from alone on this road. I can't imagine anyone in this condition feeling any differently, although I realize that many people with systemic disease are in better shape than I am. I was one of those people just a few years ago. I was mostly functional. Working, making plans for the future, kicking butt and taking names in the corporate world. It was difficult, yes, but I was managing. Now, I'm hanging by a thread at times, lucky if I can stand up in the kitchen long enough to prepare a meal. Sometimes, I can't do that. I had to quit campus classes at the college because I'm unable to sit up in a chair long enough, unable to complete any piece of artwork I attempt, unable to do more than prop up on pillows in bed most of the day. I had to turn my job and my students away because I'm physically incapable of being there anymore. There are days when I can't lift my limbs enough to step into the bathtub and wash my hair. Is this the end of the rope? Because it sure seems like it.

I've filed out an application for Social Security Disability because I have no other options. I have zero income, living on charity...thank God for charity. But God help me, I'm at the complete mercy of others and it is a helpless way to live. Things are rough right now. This is not what I wanted my life to be. I had dreams and goals and plans just like everybody else. Amazing plans. I wanted to do great things. Had I been given a real chance, I could have done great things.

I'm angry. Broken. I feel cheated and defeated. Dragged around, beaten down, and left to die a senseless death from a worthless existence. No other way to say it, at least not without using a lot of ugly words. I'm not like this every day, but it is where I am sometimes. It is where I am today.

But I'm still breathing. And because I'm breathing, I'll never stop hoping. I'll never stop hoping for a better tomorrow...for a life worth living. I'll never stop trying to make it happen. It's all I can do. Hope is all there is. Hope is all I have.

Yet somehow, hope is all I need. I have to believe I am here, in this Hell on Earth, for a purpose. One that is bigger than what I can see, or hear, or feel. One that someday makes this entire journey...both good and bad...worth it.

Where there is life, there is hope. So I'll keep breathing, until I can't breathe anymore.

Monday, March 12, 2012

New HKPP Blog

I have a lot of work cut out for me in transferring entries from here to there, but here ya go:

The Fight Against Hypokalemic Periodic Paralysis

Comments are open until I start getting spammed or trolled by dummies.

I won't be deleting entries from here...nothing will change. I'm just making sure there is a blog available that deals strictly with the condition, for those who are only wanting thoughts on HKPP and don't want to weed through the cornucopia that is My Roller Coaster Life.

Whatever the case, thanks for being here!

Wednesday, March 7, 2012

LONG week. Happy birthday Baby Jo, and my hospital update...

My precious niece, Layton Josephine, celebrated her first birthday this past weekend! I can't believe she's already one!!! Jo is such a baby doll, already walking, and so her so much!

Hooray that I was able to make the trip to Louisiana to spend Jo's birthday with her! I knew I was going to be there or die trying. I so want to be in this child's life and watch her grow up. There will come a day when I can't travel at all anymore, so I am going to do what I can for as long as I can. The trip there and back wasn't without its drama, but I managed and I'm super grateful.

I made it home a little before midnight Monday (the 6 hour trip ended up taking 10 hours...ugh), took a short nap, then had to turn around leave for the hospital in Jackson. Thankfully, my aunt and uncle were with me and did all the driving. They have been life-savers, literally, and I will never be able to thank them enough for all they have done and continue to do to help me find quality of life. I would surely be dead if they hadn't intervened. I'm at a loss for words beyond that.

My appointment Tuesday with the MDA Muscular Dystrophy Clinic went well. The new doctor I saw was very nice, asked a lot of questions, and we discussed several issues. I had a new series of blood tests, including a vitamin and mineral panel. B-12, Vitamin E, Copper, Folate, and Zinc were special concerns. I was also given a new script for emergency potassium to supplement my maintenance meds, and I spoke with the MDA concerning future medical equipment.

We had an awesome dinner at Julep, and stayed overnight.

Wednesday morning, I met with a team of doctors at UMMC to discuss my breathing and sleeping issues. Both docs were outstanding...thorough, respectful, and blunt in the nicest possible way. They both believe that I have sleep apnea in addition to the breathing problems that result from Periodic Paralysis. No oxygen has been prescribed by day (yet), but they urged me to proceed with testing so I can at least obtain a CPAP machine to use at night. Unfortunately, the testing is $2300 paid in full up front, and the CPAP is an additional God-only-knows how much. There is no financial aid or indigent care for this treatment at UMMC (or any other hospital that I know of), so I am at a stand-still until I figure out a way to make this happen. Other than that, I was prescribed yet another med. It will deal with my acid production, and I start it tomorrow morning.

Lord, I am so tired of pills. That's fifteen now, if anyone's counting. And to think, just a few years ago, I was only on one pill a day. ONE. If that doesn't put my situation into perspective, nothing will.

I'll keep you posted, and I will soon launch a blog that deals strictly with my battle against this disease. I greatly appreciate everyone's thoughts and prayers on Twitter and Facebook. I promise I don't take you for granted. Thanks for caring.

Thursday, March 1, 2012

8 Surprising Sources of Sugar, and my (snarky) thoughts about Agave

Article courtesy of Toby Amidor at Food Network Healthy Eats (click here to view the original):

"Move over salt, there’s a new bad guy in town: sugar. We know that sweet treats and heavily processed food tends to be laden with sugar, but you’ll be shocked to find out that these 8 common foods that contain more sugar than you think.

The Guidelines
The American Heart Association recommends that women limit their added sugar to no more than 6 teaspoons (or 100 calories) while men shouldn’t consume more than 9 teaspoons (or 150 calories) each day. Americans blow these recommendations out of the water, consuming an average of 475 calories of added sugar each day! So take a good look at your pantry to see if you’re eating any of these hidden sources of sugar.

Reduced Fat Peanut Butter
In order to replace the fat, sugar is often added in the form of maltodextrin, corn syrup solids and molasses. Although 2 tablespoons will only give you 1 teaspoon of added sugar, choose natural peanut butter instead without any added sugar.

Barbecue Sauce
A quarter cup of barbecue sauce has 4.5 teaspoons of added sugar. Check out our tips for choosing a healthier barbecue sauce or make your own.

Salad Dressing
Oftentimes light salad dressings replace the fat with sugar. For example, two tablespoons of this Lite Honey French Dressing has 3.5 teaspoons of added sugar. Be sure to check the food label for the amount of sugar in your store-bought dressing or make your own.

Multigrain Cereals
You may think you’re eating healthy when you dig into your morning bowl of multigrain cereal. Although it may not have bright colors, chocolate or marshmallows, it may contain hidden sugar. Many popular brands have between 1.6 to 3.5 teaspoons of added sugar per cup. Check out our taste test to spot the lower sugar cereal choices.

Sports Drinks
According to the USDA, about 36 percent of the added sugar in our diet comes from soda, energy drinks and sports drinks. A 16-fluid ounce container of a sports drink has 7 teaspoons of added sugar (105 calories). There is a time and place for sports drinks — read more about it.

Sugar is a common ingredient in ketchup, but it’s the source that matters. Two tablespoons of ketchup contain 2 teaspoons of added sugar usually from high fructose corn syrup. Look for brands made with traditional sugar or make your own.

Baked Beans
One cup of canned baked beans contains about 3.75 teaspoons of added sugar. Use canned beans without any flavoring to minimize the amount of sugar.

Breads typically have a touch of sugar added to them. About half of the brands we looked at had about 1 teaspoon of added sugar per slice. Be sure to read the label and ingredients for the types of added sugar, and avoid those containing high fructose corn syrup. If you’re looking for whole grain varieties, check out our taste test.

Spotting Added Sugar
Reading the food label can get confusing as sugar goes by a lot of different names. There are some of the most common names for sugar that you should be looking for:
Agave nectar, brown sugar, cane crystals, cane sugar, corn sweetener, corn syrup, high fructose corn syrup, crystalline fructose, dextrose, evaporated cane juice, fructose, fruit juice concentrates, glucose, honey, invert sugar, lactose, maltose, malt syrup, molasses, raw sugar, sucrose, and syrup.

Bottom Line: There are many hidden sources of added sugar. Read the labels carefully to ensure that you’re not taking in more than the recommended amount."


I have debated with people for two years about the dangers of Agave Nectar. Before my diet became so restricted, I tried it and it nearly sent me to the emergency room. My blood sugar spiked and I had a severe Hypokalemic attack. Sadly, it was my local health food store that recommended it to me, and sure enough, it even said "Low Glycemic - Safe For Diabetics!" on the bottle.

Ignorance can be deadly. Agave Nectar is processed exactly the way High Fructose Corn Syrup is, yet people are convinced that's it's healthier. Pretty scary if you ask me. Truth is, a food company in the U.S. can put whatever they want on their labels. They can say something is "healthy" and "natural" when it's not, and many, many, many companies do. It is a marketing strategy that works, so don't expect them to change unless we start educating ourselves, and act accordingly.

Somebody actually turned up their nose and exclaimed "it's from a plant, so it's healthy!" to me one time. Ha! Congratulations! Like so many others, you've been duped. Good luck with that...