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Not training, but exercising.

I hate gyms. I do. Sometimes I do force myself to exercise, since it’s supposed to be good and healthy and all that. But I just think it’s a big waste of my time. I just can’t imagine myself being excited about going to the gym or even just wanting to go. I do like the bike, though. I do. I can sit there for hours reading a book. Yeah, that’s the only thing that makes me feel a bit less guilty for going to a gym. If I’m going to stay there for an hour, at least I’m going to exercise my brain. And that is something I really like.

book brain candyNot too long ago I was searching for new books at my local library and ended up getting Brain Candy, by Garth Sundem. I had no idea if the book was good or not, but how bad can it be? It so happens that I didn’t have time till today to actually read the book. I’ve just started but it’s full of intriguing information.

Do you know the books promising to keep your brain young through a training regimen of puzzles and thought exercises? (I do see the irony here, just bear with me) Well, not so easy as they make it be. Our brain creates new connections when exposed to a new challenge, but once you’ve done your nth Sudoku, your brain’s as wired as it’ll ever be. Doing more Sudoku only reinforces these existing pathways but won’t create new ones. The same with other types of brain games: crosswords, memory games, or timed math problems. If you understand how you’ll complete a puzzle, it’s too easy. Only challenging new experiences can force your brain to create new connections between cells.

I kind of like this. It’s weird, but it makes me want to go learn something new. Maybe a new language? Maybe finally getting the courage to take that Calculus class I so wanted? Who knows what the next year will bring. All I say is: bring it on! I can’t wait to learn something new.

How about you? Any exciting new challenges in your life?

 

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A little sunshine to brighten Rhea’s day

Reading a friend’s post I got to know Rhea’s story. Rhea Swearingen was born with Glycogen Storage Disease type Ia (GSD Ia), which means her liver can’t produce free glucose. It’s the most common of the glycogen storage diseases, but it’s still a rare condition, since it only affects one in every 80,000 children. The result of the lack of glucose is severe hypoglycemia, which can even be fatal. Reduced glycogen breakdown results in increased glycogen storage in liver and kidneys, causing enlargement of both.

Rhea was only diagnosed when she was 2 years old. Now she’s 17, she’ll be 18 this summer, although her body physically resembles that of someone much younger. Because of her enlarged liver her belly appears to be a bit large, and she has very fine and thin hair that doesn’t seem to grow much. But she’s a trooper, and she’s fighting the battle the best she can.

To keep her blood sugar level throughout the day and night and avoid hypoglycemia she takes cornstarch mixed with water 5 times a day (at 3am, 7am, 11am, 4pm and right before she goes to bed at night). Her diet is also very limited since her body does not metabolize sugars the same way most bodies do, she cannot have sugar, milk or fruit, nor anything made with those things.

Her and her family went through a lot over the years. As side effects of her disease Rhea developed gout due to high levels of uric acid in her blood. She also has extremely high levels of fat in her blood, both in the form of triglycerides and cholesterol. She is also in the beginning stages of osteoporosis.

Due to Rhea’s disease going for so many years without the proper treatment, she developed lesions on her liver that had a high likelihood of turning into cancer and she had to have several tests every 3 months, including an MRI to keep an eye on any growth or change in them. She entered a transplant list, first just for her liver and later for a kidney as well, and waited a long time for a suitable match.

On May 12th, Rhea’s family got a call from the hospital. There was a donor that matched Rhea. So they headed up to the Primary Children’s Medical Center in Salt Lake City, Utah. All was well and on May 14th the surgery was completed. She received both a kidney and a liver. This is exciting and at the same time very scary. Transplant is not a miracle cure, and it comes with its own risks and medications she will have to take for the rest of her life, but the quality of her life will be better. Now Rhea will finally be able to enjoy the simple things we take for granted. She will finally be able to have the chocolate cake and ice cream she so wanted and she won’t have to wake up 3am for cornstarch.

So here is what I’m proposing: take some time to write her a card. Not a get well soon, but a cheerful card. Maybe a thinking of you card. Just a card to help brighten her day. It will take you just a few minutes and it will cost you just a card (or piece of paper) and a stamp. You can even find nice cards at the dollar store, you don’t even need to spend much. Or if you feel crafty you can make your own. And if you can, spread the word. Let’s try to get her as many cards as we possibly can. Can you picture the smile on her face opening each card? I know I can.

Rhea Swearingen (inpatient)

c/o Primary Children’s Medical Center
100 Mario Capecci Drive
Salt Lake City, UT 84113

Update: Rhea loves to sing. Here are two videos of her singing: Star Spangled Banner and You Raise Me Up.

 

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I’m like a superhero and I didn’t know it.

My mom always made fun of me saying I liked to suffer because I would wait for a headache to get stronger before taking any medication. She thought I should take something right away, but I always thought I should try other things first. What if it was because I was tired? Or hungry? Or because of my period? So I always waited until it was obvious I needed to do something. The reason for that was that our bodies get used to medication, and soon you need a stronger dose to have the same effect. I didn’t like that.

But one day, at work, my headache was getting too strong, so I took the medicine I had in my purse. I didn’t work. A colleague gave me something else, some other headache medicine. It also didn’t work. After trying quite a few different ones, with all having no result, I finally decided to walk to a pharmacy a couple blocks away to buy something stronger. One of my colleagues offered to walk me there and I’m glad I didn’t refuse her help, because I didn’t get even half-way there and had to sit on the sidewalk, unable to keep going. I didn’t know, but I was having a migraine.

Migraines. Because the world is so much brighter when you're in pain. Literally.

The doctor said I should be glad, because my migraine usually only lasts twenty-five years. Usually. What a wonderful word; usually. As in not always, or in it could last longer. Yay, me, right? That means I only have another fifteen years to go and then I’ll be migraine free. Probably. Since I’m not usually a lucky gal, I’m not going to bet on that.

Anyway, having a migraine can differ from person to person, so here’s how mine usually go: First my senses get sharper. I hear better (even sounds others can’t) and then I feel like someone’s sticking a knife behind one of my eyeballs, trying to get my eye out of its socket. But they seem pretty inefficient, since they just keep poking and poking and my eye never falls out. Sometimes I debate whether or not I should use my fingernails to help them get the job done, but I usually end up deciding not to.

The lights bother a little. They feel like little – and when I say little I mean very sharp – daggers being shot straight into my eyes. Oh, fun. I remember having to park my car in the middle of nowhere one night just to close my eyes and wait for the medicine to work, because there was no way I could keep driving with the headlights from the other cars shooting daggers at me. And you have no idea how good you feel, sitting in a car in the middle of nowhere, crying your eyes out, hoping nothing worse happens. Fun times.

There’s usually also this pressure on the side of my head that feels like a metal compressor is trying to make my head a bit more compact. Touching my temples hurt. Not touching my temples hurt. Crying hurt. Holding the tears back hurt. Closing my eyes hurt. Keeping them open hurt. If I do nothing, my mind can’t stop thinking about the migraine, and that doesn’t help much. Trying to read is painful, plus I can’t really concentrate. Forget singing, even if it’s in your head and not out loud. Well, since your head is the center of your pain, pretty much anything involving using your head hurts. I can’t sleep, because it hurts, but being awake hurts. As you see, it’s a win-win situation. Win-win as in, no matter what I do, the migraine will always win.

One thing that helps is pressing my temples against something cold. It reduces the pain until the medicine kicks in. At least it keeps me from going insane and banging my head against the wall until I break it. Break the wall, of course, because at this point I’m pretty sure my skull is unbreakable, or it would have been already reduced to dust.

But hey, for as long as my migraine lasts, and even a little before it starts, my auditory senses are really sharp. It’s like I’m a superhero or something, since I can hear noises others can’t. The first few times people thought I was going crazy. I understand them. It’s hard to keep a straight face when the girl pressing the side of her head tells you to stop the buzzing sound and you can’t hear a thing. Now I’m used to the new sounds I hear. I just stopped telling people about them, because it certainly freaks them out. Too bad it ends with the postdrome, which is the phase after a migraine. Oh, yeah, because the migraine don’t just leave you away after it’s over, it just turns into this hangover that lasts a few days. Fun, right?

So when I feel a migraine coming, I take my pills. And the only medicine that works, at least for me, is Excedrin Migraine. Oh, and did you hear the big news? There was a recall. Excedrin Migraine is no longer being sold in the US. Well, at least for the time being. Can you guess how much I’m looking forward to my next migraine? Oh, it will be so much fun.

P.S.: I could really use that sarcasm font just about now.

 

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