Thursday, October 11, 2012

Beautiful Essay About a Father's Faith in His Daughter

I was really bored tonight, and I ended up on one of my little Google research journeys. I decided I randomly decided I wanted to know the exact definition of "high risk pregnancy". Once I found that out, I wanted to know if people with CFS/ME or FM are considered this. I found a thread on a parenting board about pregnancies of women with CFS/ME, which pretty much just confirmed my suspicions that if I wanted to do it, I could, but I would most definitely need help, lots of help to be succesful. Boo-hoo. I got a little sad, but then I realized 1. This wasn't news. and 2. My Mom still hadn't gone through menopause at 50, so I presumably have plenty of time. (Provided the Endometriosis doesn't interfere with my fertility and the Adenomyosis cause a miscarriage, ayayay. Adoption keeps looking good.)

Then I somehow ended up following someone's advice to Google a phrase because one of the sites mentioned piqued my curiosity, and I stumbled onto this little page, very simple, HTML markup; so simple I could write it by hand, last updated in the year 2000. Still, it contains a wealth of information and advice, and I highly recommend it.

Here it is:

Visiting the Emerson Girls

I was so touched by the essay, that I had to try and write an e-mail to thank the author, father of a girl (now probably a young woman) with CFS, because it was really a wonderful essay. Not only was it beautiful to see a father understand his daughter's plight so completely and put it into words so well, but it was pretty interesting, too, since the "Emerson Girls" mentioned in the title and essay are in fact, Ralph Waldo Emerson's daughters, and the main subject of the essay is Alice James, sister of authors Henry and William James, AND it deals with the psycho-social aspects of little-understood illnesses, both then and now. (So much for my fantasy that if I'd been born 200 years ago and been sick then, I would've been much better off because people would just accept the fact that I was sick and I wouldn't have to constantly fight to survive, lol.)
Unfortunately, it bounced almost immediately, so if you're out there somewhere Mr. Frank Albrecht, bless you for your keen understanding of our disease, and what we go through, and just this great essay in general! It truly is a gift!

Oops, I almost forgot the main site link:

For Parents of Sick and Worn-Out Children

Sad News for the CFS/ME Community

I accidentally stumbled upon this news in a very random way; I'm surprised I hadn't become aware of it in some other way until now, a couple of weeks later. It seems we have lost a prominent member of the CFS Community, Rich Van Konynenburg, a CFS "Civilian"; one of the rare, non-medical, non-patient warriors helping in the fight against our disease. If you have belonged to any of the major lists or forums for CFS/ME in the last decade, the name is at the very least familiar, or you have heard of his "Methylation Theory".

Such a shockingly sad loss! Follow the link below to learn more about Rich and his untimely passing:

  A Tribute To Rich Van Konynenburg

Sunday, October 7, 2012

Fructose Intolerance Info

Last week I mentioned that I suspect I may have Fructose Intolerance, due to major stomach issues beginning after a couple of weeks drinking fruit & veggie smoothies. (No this wasn't the usual adjustment stuff, I know a little gas & changes are expected, this was major, stomach spasms, moderate pain, constipation, diarrhea, having to run to the bathroom right after eating, killer acid reflux, and none of my usual remedies for my usually queasy stomach working. I'm so sick of feeling like my body is falling apart, sigh...)

Going on the FODMAPs diet mentioned on this site helped, until I went off if and it came back with a vengeance, couldn't eat much of anything again. After a couple of weeks, I got desperate and tried some ice cream, and set myself up again. The bizarre thing is, things that didn't bother me before do now... Anyhow, here is some info on the whole Fructose Intolerance situation. Worth reading if you have IBS or stomach symptoms.

Basic Facts About Fructose Intolerance

Also here is an excerpt from the same site:

"Fructose malabsorption (= dietary fructose intolerance (DFI) ) is, however, an acquired condition caused by a defective transport system (GLUT-5) in the small intestine. This means that the fructose cannot be absorbed into the body at a sufficient rate. But if it has been successfully transported then it can be broken down without a problem. Every third European suffers from fructose malabsorption!

The term "fructose intolerance" is often used by the public to describe fructose malabsorption or dietary fructose intolerance. On the Food Intolerance Network website we will use the term "fructose intolerance". We never talk about hereditary fructose intolerance (HFI) unless this is referred to specifically!
How does fructose malabsorption work?

Sugars are absorbed via the intestines with the help of GLUT transporters. The GLUT-5 transporter is responsible for fructose. It takes the fructose from the intestinal lumen into the enterocyte. However, this transporter also reacts to other substances. Some sugar alcohols like sorbite block it, and glucose stimulates its activity. Every molecule of glucose makes it possible to absorb a molecule of fructose. That is why people with fructose malabsorption should stay away from sorbitol, mannitol, isomalt etc and add glucose when they have to eat a larger amount of fructose (after the restriction diet). The level of transporters that are still functioning is different from person to person, which is why the "glucose-trick" does not work for everyone! This needs to be established individually!

Why some people develop fructose intolerance is not clear as of yet! But it has been observed that over the past few years carbohydrate absorption malfunctions have been on the rise. "

Should FM & CFS Patients Get Vaccines?

Although the jury has been out on this subject, many of us have decided to forego the flu vaccine in past years, myself included. (After seeing my mother, who suffers from many of the same symptoms I do, get sick for weeks after getting one about 10 years ago, I'd decided they weren't for me, and at the time I wasn't even sick, so you can imagine how I feel about them now.)

I have actually been avoiding getting my tetanus booster for a couple of years now out of fear of it not working correctly with my messed up immune system. This article helps put that fear to rest, and offers input on a couple of other vaccines as well.

Dr. Lapp on Vaccines & FM/CFS

Any thoughts?

Monday, October 1, 2012

Update, Immune Modulators & IBS, or Possibly Fructose Malabsorption?

Well, needless to say, it's been a heck of a summer! Have spent it trying to steel myself for a move and subsequent travel, trying to stay cool, and of course, juggling symptoms, and that nasty enteroviral flare-up w/the rash. In August, seeing my supplement budget fall even further, I decided to trade in the Samento (PCA-Free Cat's Claw) and Inosine for Equilibrant and Inosine. I'd been wanting to try Equilibrant with the Inosine for awhile, but hadn't had the cash and had been afraid to give up the Samento (I ran out of Samento right before I get that viral flare, so was afraid to quit it again). However, I just couldn't afford two bottles a month of the Samento anymore, so I figured I'd take the plunge. Things seemed to go okay, virus-wise.

The other change I made, was that I was trying to eat more fruits and vegetables, so I got my hands on a trial of the Nutri-Bullet Blender, kind of like the Magic Bullet, but specifically for "pulverizing" fruits & veggies, and endorsed by David Wolfe, a Raw Foodist whose books I read when I tried going that route several years back. Suprisingly, it worked pretty much as promised, not only that, but it was ridiculously easy to clean (since I have trouble keeping up w/those dishes, fabulous, you can even drink in the blender cups, so no other dirty dishes). So off I went on my fruit & veggie smoothie oddysey, at LEAST one a day for most of 2-3 weeks. It seemed to be going great for a second there, but about two weeks in, I realized, not so much. I started having excruciating stomach pain, the likes of which I had never known! (I actually had to take painkillers for it, which was a new one!) And it wasn't gas, my poor stomach actually felt like a muscle in spasm, a sensation like it was all tensed up and I couldn't relax it. The lining of my stomach felt inflamed and irritated, raw, in a way I'd never experienced before. I tried getting back on my Ranitidine, nothing, Mylanta, nothing. I started getting desperate. I went out and spent part of my moving money on Enzymes &; Probiotics, which usually helped, nothing. So I started doing some research, and discovered a condition called Fructose Malabsorption, which fit to a T. (I'd also mysteriously started experiencing plunges into sudden deep depression, which I had had earlier in the summer, but had recovered from.) I stopped the smoothies, and the pain let up quite a bit, but my stomach still got irritated most times when I ate, and I discovered that fructose malabsorption isn't just about all fruits & veggies, so I decided to try a diet for Fructose Malabsorption called the FODMAP Diet. Finally, relief! Almost right away the pain stopped. The rest of the symptoms took a little time to retreat, and some were still acting up when I ate, but I could live with that much more easily and it kept getting better.

So things got steadily better for about a week, until I decided it was time to try a regular meal again. BAD idea. I ended up worse off than ever, now couldn't even eat the stuff from the FODMAP diet, just crackers, quinoa, and baby food! I went to the gastroenterologist, with whom I'd already rescheduled the Endoscopy I'd missed when I didn't have anyone to take me in May, but I was hoping he could do something, but nope. Just what I was doing already & pain meds for pain. (Weird, before this episode had never thought of taking pain meds for stomach pain, but I guess, pain is pain.) Well, another week later and I'm doing better...easing back into the FODMAP diet...Not depressed, but terribly unmotivated. Maybe my subconscious is just trying to save my willpower up for the move? The place was officially foreclosed about 10 days ago, so waiting to see how the new owner handles that. Hoping for Cash for Keys...then maybe I can have a chance to rest at relatives & make sure I can at least eat before I travel...