Friday, November 23, 2012

Just in Time for Black Friday - The Chronic Illness Survival Kit

Be Kind to Yourself: VirtualGrrl's One-Stop Amazon Shop

Be Kind to Yourself: VirtualGrrl's One Stop Amazon Shop
I put a list together of things I think everyone should have that I've utilized to help me survive M.E. & my many health issues. There's supplements, tech-gadgets, aids to stretch and massage your muscles, and more. Check it out. They also make great gifts for anyone, after all, even "Normals" get sore muscles, need gentle exercise, and suffer from stress!

*Yes, this is an affiliate link, and of course, I really appreciate it you decide to visit! 

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...

Sunday, September 16, 2012

Article: Let the Buyer Beware

An article I linked to in my last post, definitely worth reading, describing how to differentiate between valid claims and scams in health products aimed towards the chronically ill.

How NOT to Help: Marketing MLM Products Towards those with Chronic Illness

If you are like the average person, myself included, chances are you've at some point tried joining a Multi-Level Marketing organization. I think this is probably even MORE likely amongst those of us with chronic illness, because most of us are at some point forced to either take time off or leave our jobs & careers altogether.

For me, personally, it never worked out, probably because of the fact that due to my illness, I've become pretty socially isolated, and marketing online just didn't work as well as I'd hoped.

Still, this is not what turned me off from MLMs.

What turned me off were two different things:

1. The questionable ethics of marketing aimed towards the chronically ill


2. Family members and friends treating me like a target for sales rather than someone with whom they had a personal relationship with.

My first negative experience was before I even tried any of the MLMs myself. I'd signed up for some kind of Legal HMO-type network, where I paid something like $35 and had 24 hour access to a network of lawyers if I should ever need any legal advice. I think it was a 3 month trial, and then charged monthly, and also gave you the choice to sell to your own pyramid of people. So what happened, is when I didn't renew after the trial (I had just been diagnosed with FM and was not working and having a hard time financially) I guess my friend's commission became endangered. Suddenly, the guy, who had seemed really sweet, a very nice person, got crazy on me, saying I was being negative, that this is why I was broke, all kinds of awful personal attacks. All because I wouldn't keep paying for his product. It completely took me aback. Needless to say, I stopped talking to this "friend". Strike 1 for the MLMs!

Next, I tried one myself, a company selling "chemically safe" products, everything from Mineral Makeup, to Toothpaste, to Supplements. It was slightly aimed towards people with FM, but it wasn't necessary, and they actually did claim to donate part of the profits to and FM Research organization (which later turned out to be questionable, but that's a whole other story). I was sure my family would be excited to help, and played that up, but I don't think I ever got even one sale from any of them, so down went that idea... I think over a 2 year period I at least managed to make back what I put into it, so it wasn't a total loss.

During this time though, is when I began to see how the Internet was being used to market products, especially MLM products, specifically towards people with chronic illnesses, ESPECIALLY Fibromyalgia. I did a lot of research, talked to a lot of people, and rarely did any of these products have lasting effects, if they had any at all...sometimes people would get really into something and claim they were "cured" by it, and become a distributor themselves, giving glowing testimonials, but I found that some of these were actually frauds, and some, were just caught up in the MLM machine. Maybe it did seem to help at first, but it rarely made a huge difference in the long term. As time went on, I found the amount of advertising being directed at people, especially with FM, was astonishing, to the point where it made me mad. (These products were almost ALWAYS ridiculously overpriced. Sometimes they were even e-books, which varied in price, promising "the answer" to recovering from FM, which on further investigation, would turn out to be information that could be found for free using your favorite search engine! Example:

So like most people with chronic illness who spend a lot of time online, I became very wary of any "miracle cure". (Read: Let the Buyer Beware )
And I know I'm not the only one; if you just do a search for "miracle cure" and "Fibromyalgia" you will find various memes out there that include a top 10 or 5 list of "Things NOT to say or do" to your friends with FM or CFS and so on, one is ALWAYS about not boring us with the details of that "new treatment, cure, herb, juice, mushroom, etc.. Because really, we are over it. Those of us who are into researching treatments know which treatments we want to try, and they pretty much NEVER include MLM products. (Although I admit, I did try one at the beginning, my friend's Mom who had FM suggested it to me because it helped her, so she sent me the first one for free, and it did help a little, so she would sell it to me at cost, but eventually it was just too expensive to be worth it.)

My second really negative experience came when a family member tried to recruit me to another MLM organization. By this time, I had been sick for years, and was literally just scraping by so that buying TP from the 99 Cents store was a major victory, and keeping a roof over my head a major challenge. So this family member comes to me on the pretense that they want to help me out. I think this time, telling them I didn't have any money was enough. I was actually disappointed because they seemed so excited & I wanted to help, and would kill to be helped, but with no money, they lost interest, although, first making me feel like I was really missing out!

So a couple of years later, the same person comes along, not sure if it was the same or a different deal. But when I start asking for details, they clam up and want me to come to meeting. But see, by this time, I know how those meetings work. They tell you just enough to keep you hanging, get you all hyped up, and then towards the end, they drop the bomb about how much you have to pay to sign up.

At this point, I'm wayyyy sicker. I couldn't even manage sitting in class at school, and had pushed myself so hard and had cognitive problems so bad, I could barely talk on the phone clearly without any awkwardness.

But here is my family member, and they keep saying how they want to help me. I keep informing them I don't have any money, but they insist, so I figure, well, it's my relative, why would they make me jump through all these hoops if it was hopeless, right?
Only instead of acting like someone I'd known since I was in diapers, they suddenly became a professional salesperson, which I can't stand. I know all the right questions to ask, and they are bobbing and weaving, and trying to get me to go to that darned meeting. I ask to have lunch w/them instead to discuss it, but remind them I have no money. While waiting to hear back, I do some research, and find out it costs $3,000 TO JOIN!!!!!!!!!! This in turn leaves me feeling confused, and hurt. I feel like my family member is treating me like a mark. Either that, or they think I'm lying when I say I'm broke. (Which feeds into my insecurities, making me wonder if my family has been so absent when I've needed them because they don't know what I'm going through, so maybe I should be clearer? But that's another story, and now I understand that A. The average person doesn't mean it when they say they're broke, so when you say you're broke and mean it, people don't understand that. and B. People nowadays are just too busy leading their own lives to care if stuck in bed for two months and need help.) That family member and I no longer speak. (Not even my choice, I was hurt, but I'm not THAT unforgiving.)

From this point on, I smell MLM, and it practically strikes fear in my heart. No, I'm just kidding, it's not that bad. I'll gladly buy Avon when I can afford to splurge a few bucks (and yes, by a few bucks I mean like, $5-6, lol). I have one friend who frequently signs up for new MLMs, but is very nice about it and has never made me feel bad. A former roommate did get pissy when I turned down her Mona Vie juice MLM though, so I've had both experiences. But I'm definitely wary, because I've seen what it does to people. I just never imagined lightening would strike twice.

Which is what brings me to this topic. I had another sad experience with a family member trying to sell me a product, and this time, worse, aimed at me because of my illness, and even worse, it was someone I admired, looked up to, and never, ever would have expected this from.

They first approached me a few months back, which granted, was really bad timing, because I was so overwhelmed with family problems and my own problems that I was as close as I've ever been to a nervous breakdown, I literally felt like I was my sanity was a tattered map I was willing to hold together on a daily basis, so it couldn't have come at a worse time. The person kept going on  & on about it based on it on the premise that it would help my health problems. I even pointed out that it had an ingredient I couldn't tolerate because of my IC, but did that stop them? Nope! I imagine a superior was consulted and she came back with a testimonial from a friend of a friend who had IC as well and was practically cured or something to that effect. It kept going on like this. I started to wonder if maybe I should try it. (At this point, I thought the first bottle was free, because I'd seen that on someone else's site during my research, and this was good, because, I am definitely broke, at this point, all my supplements were funded by my Mom, bless her for that.) So finally I gave in and said, send me a bottle. But it wasn't free, so I said, okay, some other time, and I think I still had to be firm about that, and explain, as I had to my last relative, that when I said broke, I meant broke. Shockingly, since I had opened up to this person, they claimed to have NO idea that things were so tough for me. Finally they let up. Mostly. Still, this left a bad taste in my mouth, and I felt hurt and annoyed and a little angry because, again, I'd felt like a family member was treating me like a target for a sale, worse, under the guise of wanting to help me get better. I licked my wounds, and tried to get over it, but it took me months, really, to see that person the same way, and convince myself that I needed to not take it so personally, that maybe it was more about me than them, after all they had a great, busy life, family, vacation homes, friends, I couldn't expect them to dwell on my problems.

So I finally thought I had put it to rest, convinced myself that that person hadn't meant any harm. And then the very next week, WHAM! Here we go again! More advertising coming my way. This time, a friend who had FM apparently now had no trouble getting out of bed, AND no more stiffness! I tried to ignore, but no, then I got the full-on sales pitch again. Nope, actually in worse financial straits now, can't afford it. Would I like to become a distributor then? I could sell to my friends w/FM! A built-in audience! (Very subtly though, but it had also been suggested as an idea for me to another family member, so it was pretty obvious.) This time I was MAD, so I decided to remind them I wasn't okay with recommending products I didn't know for myself worked because of the problems I'd seen with people with these illnesses being targeted. For that, next, I got an offer to tour the factory. As if I could probably even manage that! I'm getting tired of making excuses that aren't being heard, so I try to be more firm, and more blunt. And all hell breaks loose. I almost can't believe this is happening, and as always, I begin to question objectively if I was being fair, and I feel confused, and end up feeling like I did something wrong, so I try to make nice. But they're not having it, because they are RIGHT, I am WRONG, how dare I  say how they are making me feel that they just want to make a sale and that I'm not comfortable with selling to sick people...I am a negative person, I thrive on drama, and I am closing the doors of opportunity.

All because I'm choosing to pay part of my electiricty bill instead of buying a product that will improve my health from my relative who just told me they made $1000 selling the stuff w/practically no effort, takes ski and beach rental vacations every year, but can't possibly afford to send it to me even though they are sure it is going to make my life so much better, which is all they want for me, golly-gee-whiz! And it's not about making a sale. It's about wanting to make people's lives, MY life better.

I feel like I'm in the Twilight Zone. I'm sad. And disappointed. And confused. I keep replaying it all out in my head, because I really can't believe it, but I really don't know what I could have done, except maybe just ignored the person, which is still uncomfortable and would still have led me to the same sad conclusion. Bought the darn product? No, I like electricity, kind of need it, especially in this heat! Maybe I could have been a bit more delicate, but my patience had been worn thin, and while I tried to dance around the subject politely before, once my temper kicks me past that, I get blunt. I thought maybe this would make the person realize they were taking things too far, that the sale had perhaps become more important than our relationship, I even offered to help, as long as it didn't involve aiming it at sick people, because I felt strongly that was not ethical, but that's not how it turned out.

This article I found about the dark side of MLM pretty much hits it right on the head if you look under the heading "IV. Relationship Issues: An Experiential Problem", "Never Admit You Are Wrong", "Counting the Cost: The First Church of MLM" and "Disease Alert: Beware of MLM Blindess". It describes the behavior and mindset of all the people who I've had bad MLM encounters with:

"Many readers will share the experience of observing MLMs divide families, friends, churches, and civic groups. Lifelong friends are now "prospects." The neighborhood is now "a market." Motives change, suspicions rise, divisions form. The question is begged: "Is it worth it?"

"Apparently, it is difficult for gung-ho MLMers to see how they look from the outside. They can watch lifelong friendships unravel, churches and civic groups poisoned, the avoidance of friends and family, etc., and never see that MLM was the cause.
If you try to point this pathology out, you are treated as if you have attacked the very gospel! Perhaps for some, the MLM approach is a new gospel?"

So I know it's not just me.

Have you had similar MLM experiences?
 Do you feel the same about people marketing to people with chronic illnesses, offering "miracle cure" type products?

Could there possibly be some reason I'm not seeing for this person wanting me to sell me this product so badly besides wanting to make a sale? Maybe I'm even looking for a reason I'm wrong, so I can apologize, because I'm pretty sure they are never going to...

Saturday, September 15, 2012

It's Invisible Illness Week

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: In order of Severity: Myalgic Encephalomyelitis, Dysautonomia (POTS), IBS, Depression, Interstitial Cystitis, Fibromyalgia, Endometriosis, Degenerative Disc Disease, among others that are not worth mentioning.
2. I was diagnosed with it in the year: 2002 for Fibromyalgia, 2006 Endometriosis, 2008 w/CFS/ME, 2010 for Interstitial Cystitis
3. But I had symptoms since:  2001 is when the pain first started becoming troublesome 2002 when it became a real problem, and constant, for awhile. It's suspected I contracted CFS/ME due to food poisoning in 2002 as well. Depression, since I was 13.
4. The biggest adjustment I’ve had to make is: Learning not to buy into the feeling that I'm worthless in American Society if I don't work, accepting that I can no longer do "anything if I really want to", learning to ask for help. Learning to try and let it roll of me that people might think I'm lazy, a pill popper, prissy, a weakling...It still smarts, no matter how hard I try. And I miss being a bit of a tomboy!
5. Most people assume: I’m healthy and capable of normal activities; they have no idea I can only keep up the facade for a few hours under good circumstances. 
6. The hardest part about mornings are: Waking up and staying that way long enough to prop myself up so I don't drift back off and my heart has time to adjust, and those first steps when my feet hurt.
7. My favorite medical TV show is: House. I wish I had a doctor like him!
8. A gadget I couldn’t live without is: My laptop, cuz between my back/neck problems & POTS, I can no longer sit at a regular computer for long, my laptop lets me lean back, even lie down & helps keep me entertained & informed. :)
9. The hardest part about nights are:  Going to bed when it seemingly took all day to finally feel okay, knowing I have to start all over again the next morning.
10. Each day I take about 6 pills & a host of supplements.
11. Regarding alternative treatments I: have been priceless for getting my FM & DDD pain under control, as well as spiritually; I just wish I could afford them these days!
12. If I had to choose between an invisible illness or visible I would choose: A visible illness, for sure. I'd gladly give an arm or leg if I could feel and function otherwise normally!
13. Regarding working and career: I’ve had to give up on that for now, I wouldn't before and it made me wayyy sicker. It was very frustrating because I had just gotten to the point where I could make a livable wage. I hope someday to get well enough to go back to school, maybe become a librarian, a nice quiet desk job. Giving up my last "real" part-time job though, was one of the most devastating things I've ever had to face.
14. People would be surprised to know: that I'm usually upbeat, in person, lol!
15. The hardest thing to accept about my new reality has been: being broke, learning my limits (still learning) facing my limitations, fighting the feeling that I'm letting people down or not trying hard enough.
16. Something I never thought I could do with my illness that I did was: Accept that so many things are out of my control. (Still working on it!)
17. The commercials about my illness: are misleading, because they seem to give people the impression it works for everyone, doesn't mention all side effects, and will make us all better. They also had a ridiculous amount of trouble pronouncing FIBROMYALGIA.
18. Something I really miss doing since I was diagnosed is: going to concerts, having a normal life, working, having a plan and goals, being able to buy cute clothes!
19. It was really hard to have to give up: having an active social life, going to concerts, partying like a rockstar. My friends when I had to move in with my Dad. Hardest of all was Working!
20. A new hobby I have taken up since my diagnosis is: Blogging.
21. If I could have one day of feeling normal again I would: I really don't know...maybe I'm greedy, but one day just doesn't seem like enough, lol, and for things to be really normal, I'd have to go back in time!
22. My illness has taught me: to ask for help when I need it.  I was never good at that before and I still find it hard now.
23. Want to know a secret? One thing people say that gets under my skin is: When they play the one-up game, or belittle my pain. Or worse, when they try and sell me "miracle cures", especially if they are family and seem more interested in making a sale than in our relationship.
24. But I love it when people: Ask if there's anything they can do to help, or just come visit.
25. My favorite motto, scripture, quote that gets me through tough times is: I should probably get one of those!
26. When someone is diagnosed I’d like to tell them: It's VERY hard work, but you CAN get things under control, or at least improve the pain. For the rest, promising new treatments are on the horizon. Keep your family or friends close, because you will need a support system, but remember that most of all it's up to YOU!
27. Something that has surprised me about living with an illness is: that I've made it through so many seemingly impossible times and can still find rays of hope here & there. And people and their random acts of kindness!
28. The nicest thing someone did for me when I wasn’t feeling well was: My friend came over with her daughter and helped me vaccuum, put away laundry, and do dishes. I was seriously over the moon! It makes life so much easier when you're sick, does wonders for your outlook to not have to look at the mess and feel the despair, and just fills me with awe to feel that people could be so kind.
29. I’m involved with Invisible Illness Week because: I have a host of invisible illnesses, and I hate that I and so many people are suffering and so little is being done to help. I hope that one day many of these under-recognized illnesses will be as well known as Cancer and AIDS, because they cause just as much suffering. At least one doctor has said they would choose AIDS over CFS/ME.
30. The fact that you read this list makes me feel: loved and supported, and like I am succeeding at something. So please feel free to comment so I know you read!
To list your 30 things, click here.

Wednesday, August 29, 2012

Exciting News from Phoenix Rising Newsletter: New Meds, Treatments, & Mast Cell Theory

This afternoon I opened the latest e-newsletter from Phoenix Rising, and I have to admit, I may have gotten a little's been far too long since I read a page as chock-full of hope and good news as this newsletter was! From a couple of stories I'd already read, regarding Obama keeping his promise to ask that CFS/ME research be made higher priority & a new CFS Treatment Primer, to new medications for helping w/cytokine responses, the news that Ampligen may be FDA approved by the new year, and a fascinating Mast Cell theory that may help explain part of the process that causes just about every symptom I & my fellow CFS/ME & FM sufferers have, from IBS, to POTS, to such random things as itchy skin, and even Interstitial Cystitis! (A fascinating part of this article has to do with "Exercise Anaphylaxis", which a friend of mine w/FM & IC recently described her experience with perfectly, though I had no idea what it was when she explained it to me.)

Anyways, do check out Phoneix Rising; if you haven't signed up for their newsletter yet, I highly recommend it. I'm including a link to the Mast Cell article I'm so excited about. It just makes so much sense and explains why I'm constantly fighting this seeming cascade of symptoms...and why stomach & bladder pain can seem to be connected. Has a good section on POTS, too, explaining that perhaps Beta blockers are not the best thing, and there's also information about meds to treat the mast cell problem & natural alternatives. It may just be part of the puzzle, not the cause or the cure, but it looks like we're actually getting somewhere, if we can find one or two meds to keep all that in check? The possibilities of how much that could improve our quality of life are very exciting! Happy reading!

Thursday, August 9, 2012

Social Security Agency to Investigate if California is Illegally Denying SSDI/SSI Claims

Why does this not surprise me?

A Useful Illustration for POTS

One of my Facebook friends posted this on their feed, from Chronic Perserverance's Facebook Profile, and it's so great I have to share:

The temperature part is nice to so in print, so I don't feel like such a wuss for hiding out indoors being grateful for my A/C all day! Sometimes I still forget and get on my case for being a wuss, so it's nice to be reminded I do/don't do things for my own well-being, not because I'm a wuss. lol. Yup, I've had some freaky temperature-related incidents! So many things to worry about not being in my control if/when I'm forced to travel, but no point in dwelling on them...

Interesting Article on Candida & Endometriosis

I was pleased to see this article on Candida, Gut Dysbiosis, & it's relationship with Endometriosis, because in my experience, there is definitely something to it. My Endo & IC are definitely tied to my stomach somehow...if one is acting up, you can bet the other will be too. If I eat junky foods, and my stomach ends up all swollen & distended (which it will, exaggeratedly so!) you can bet my IC pain will act up if I don't hurry up & manage the fallout. Similarly, when my IC or Endo are  acting up,  my stomach gets super-sensitive. I know this article is kind of structured as to advertise the Body Ecology Diet, but if things are really out of control, the diet is not a bad place to start! I still use what I learned from doing it for a year or so to help me keep my stomach issues from getting completely unmanageable, and to help keep pain from the other two conditions at bay, so I don't really have any qualms about posting it.

Candida & Endometriosis

Sunday, July 29, 2012

Inspired into a Funk.

Having a tough time...
Friday, I had big plans. Well, not for the average person, but for me, or anyone with M.E., yes; I'd planned on running errands, vacuuming, and performing key girly grooming rituals. (Probably far too much to ask for in one day, but I was determined!) Instead, I manged to check my e-mail and make some phone calls before that raging fever of weeks past paid me another visit. (Spots are mostly gone, although my chest pain keeps coming back, possibly from sitting up unsupported to use my laptop in bed?) So I supplemented, medicated the fever away, and rested, waking up in time to watch some of the Olympics Opening Ceremonies, which I love (can't believe it's my second Olympics here, incredible) and I think that was the key culprit. I adore seeing all those cultures together, in peace, and hearing the amazing stories. But this time, it also reminded me of all the dreams I've been forced to put aside.

Fortunately, by taking all the immune supplements I could, particularly, I believe , regular doses of ProBoost Thymic Protein (along with my regular doses of others) every few hours with my acetaminophen, by Saturday I was able to at least shower and do my hair. For some reason, despite the fact that I rarely ever put on more than eyeliner and lipstain lately, I decided to go the extra mile with my makeup, mascara, kohl eyeliner & smokey shadow, along with base and powder on the rest of my face. It made my eyes look so distinctly brown, and large, and so much like my mother when she was my age, and then I got silly and took pictures, because it seemed like such a waste that no one should see the fruits of my labor, despite the fact that I always roll my eyes at pictures of people taking pictures of themselves. I then wasted so much time on that, I tired myself out & didn't get to the store before closing. That's when the funk really began. I'm just so tired of not living. A couple of the pictures came out so well they didn't even look like me, really, but even the ones that look at me, you'd think there was so much potential. You can't see that I spend 75% of my hours in some form of physical discomfort, or that I'm ridiculously weak, sickly, and almost constantly tired. That's not me.
And I miss me.
I miss being strong, steady on my feet, and knowing if I really wanted to I could have a chance of having a 4 pack, being able to clean my home in one day without fearing the vacuum cleaner, and then go out for some fun after. I miss squeezing every bit of fun out of the summer sun & nights, being able to take advantage of living in one of the most fabulous places on the planet; going to the beach, the mountains, the desert, or the city at my pleasure. I miss working, feeling accomplished every day, having a paycheck to look forward to, and a future to plan for, and the knowing I could do anything I set my mind to. I want back all the years I've missed out on, all the concerts I've missed, all the making memories with my friends, being a part of my familes' lives. I can't believe I've been here, as if in some kind of time-out, for FOUR years, as if the previous few of grasping for some sort of normalcy weren't enough. I'm tired of life passing me by, sitting around with my mind running in circles, trying to find a way out of this state, grasping at ways to be happy and things to be happy about, being so willing to settle for some peace and tranquility, or at least, trying not to be miserable.

I watched the Olympic Cyclists, and I know in any life I never would have been one of them, but I'd at least like to be able to do more than ride my bike around the block in circles for 10 minutes, only to spend 15 on the lawn recovering, weak, and heart beating out control and be turned off trying it again until the air had gone from the tires from disuse.

And always, the sneaking suspicion slinks in, maybe I'm not trying hard enough. Maybe I'm so worn out from failing I'm not approaching things in the right manner. But I'm tired, and sometimes I feel like a wild horse that's been unskillfully broken; angry and fearful of everyone who approaches, completely out of control. And I envy all those young, dewy-eyed Olympians, all their hard work, their hopes, goals, and dreams. But I'm so worn out, I don't think I can even be properly angry about it...

Monday, July 16, 2012

POTS Links

So, I heard the other night on E! about this guy, Greg Page who had to quit the children's band (I have lots of cousins with kids, lol.) due to POTS, so went to read up about him, and found these two links I hadn't really seen yet! I especially liked the one for young people, and it was cool, because I'd been thinking I had to do SOME kind of exercise, spending wayyy too much time in bed, and gaining way too much weight & getting too weak. Then I checked that site out, & they had an article & a link to strengthening exercises, so I thought that was cool.

Dysautonomia Youth Network of America (DYNA)

National Dysautonomia Research Foundation

Oh, I believe the Wiggle's guy, Greg Page, founded one of them, and also very cool, he's mostly recovered and back to work!

My Heart is Sore

Or at least I think that's what it is. I'd noticed some weird feelings in my chest since I got sick w/the fever & rash dealio, a funny feeling, like itchiness in my chest, sharp little pains when I inhaled too sharply, and it made me wonder if it was possible to get the rash on my organs, too.

But even after I started feeling better, I kept feeling this random soreness in the left side of my chest, it felt like muscle pain, but as it persisted I realized it there was something weird about it; it was in the wrong place! Now, I used to have a really demanding track coach, and I took weight-lifting for P.E., in fact, I could bench more than my own bodyweight at one time, so I know what sore pecs feel like, and this isn't quite the same. It's in the wrong place, and it's almost like an itchy, scar-healing sensation, along with being sore. Actually at one point today, it was driving me a little nutty, and it also started feeling like someone stuck a balloon under my left breast and was slowly blowing it up, just really uncomfortable. Plus, I've been waking up with really bad tachycardia, the second I sit up the slightest bit, my heart is racing so fast I'm out of breathe and all I can do is lie there.

I have a feeling what made it worse was the vacuuming I did Saturday evening...the darn fleas seemed to be multiplying so I figured I'd better vacuum again, and I was soo proud of myself when I finished! I was drenched in sweat, and it felt SO good. I can't remember if my heart was racing then, or if I was out of breathe, all I cared about was feeling victorious. To top that off, I managed a shower, which felt wonderful after all that. And then I do remember noticing my chest feeling sore again. Yesterday, I woke up feeling like hell...then last night I had trouble getting comfortable , my chest seemed to hurt if I lay down sideways but I found it hard to breathe if I lay down flat, grrr. Today I woke up feeling possibly worse than yesterday, less sore, but very swollen and battered feeling. Sigh. I started reading up on myocarditis caused by infections (mainly Coxsackie B viruses, oh yay.) and it seems to fit...called my cardiologist & she wants me to see my PCP. Earlier, the thought of driving the 20 minutes to go there (had planed on going to pick up a form & some medication waiting for me there.) just made me want to cry, but hopefully tomorrow will be better.  I guess Viral Myocarditis is usually minor, and just requires rest, but I DON'T HAVE ANYMORE TIME TO REST!! I'm so tired of resting and, of depending on the kindness of strangers. But even worse, the treatment if it's more severe includes all these meds and a low salt diet. I already have to cut back on salt a few days a month, and it's hell, so the idea of having to do it longer almost makes me want to cry! Oh well. I guess I'd better just stay calm. At least, I got good news about my case when I called the SSA directly (had  It is being expedited and was sent to the department that can make decisions or send it to trial) even if I can't get any word from my attorney...

So I guess I'll just try & stay comfortable & calm & take it easy & hope for the best...

Friday, July 13, 2012

Spotted Chick

Gross!! But like a trainwreck...

Hand, Foot, & Mouth...& Diabetes?

Okay, will try and keep this short, because I think I feel that fever coming back again. It really doesn't like me being on the computer!

Well, like any 21st Century sickie, the Internet is my friend. And looking at my diseased looking legs, I really wanted to know more. I've looked up the Enteroviruses before of course, and Coxsackie B4 in particular, but I wanted to find a rash exactly like mine, and my memory sucks, so I wanted to refresh it on Coxsackie B4 and did some digging. Here's what I found:

This is a story about the children dying in Vietnam that has been on the news lately. I stumbled on it doing an image search. While the strain they're talking about seems to be Coxsackie A, I did read that Coxsackie B can cause the same thing, Hand, Foot, & Mouth Disease, and they do mention it:

The baby's foot (in the photo on above link) looks just like mine, I even have spots on the bottom now. And incidentally, I found out that it can be Hand, Foot, & Mouth w/o the sores in the mouth, but I did actually realize I do have a couple ulcerated spots in my mouth, I noticed because one, on the inside of my right cheek, has been there nearly two weeks, and I kept trying to get the Food-grade Hydrogen Peroxide/Aloe liquid I've been drinking on it to get rid of it, to no avail. (Usually that wipes out anything like that, overnight!) So that was kind of cool. Although, not because it's the kind of thing that makes a little voice in me say, HELP! Make it stop! But because it's visible. And I shouldn't have it (most people get it as children, and it doesn't become chronic) and basically, I JUST WISH SOMEONE WOULD FIX ME! :)

Then I found this, which I'd NEVER heard of and didn't like at all, especially since I had already concluded that some weird/different/new sharp pains I'd been having were my pancreas:

Yup. Apparently it has been found that Coxsackie B4
"can trigger an autoimmune reaction which results in destruction of the insulin-producing beta cells of the pancreas, which is one of several different etiologies of diabetes mellitus.
An absolute deficiency of insulin renders the person a type 1 diabetic."

Ahhh! I'd heard rumors that Diabetes was caused by a virus, I just had no idea it was MY virus! (Or rather, one of my viruses. If memory serves well, I have another strain of Coxsackie B and 1-2 of Echovirus as well.) I didn't even know Type 1 Diabetes could be acquired, I thought you were born with it . The more I learn, the more I wish the SSA were a person I could shake and say, "NOW DO YOU BELIEVE THIS IS SERIOUS?" Oh well. I absolutely refuse to get diabetes, but I do think I will start putting together an information packet myself to refute all their obnoxious little digs, suppositions, and false conclusions. (Say like, how my primary treating doctor is a published, respected researcher who is trying to make me better even if it's with alternative medicine because no FDA-approved medicine exists; my lawyer already said that wasn't kosher that they dismissed his input because they have to give treating physicians findings a certain amount of prevailing weight and they didn't.) Maybe I'll send them pictures of my pretty red dotted limbs and see if it helps. Even if they aren't that serious (usually at least) maybe they'll get a better reaction than my pile of medical records. I know they creep me out!

Thursday, July 12, 2012

Another Reprieve

So I got up  tomorrow yesterday (fog!) fighting the fatigue with every ounce of my being, because my friend was coming over to help me pack. I somehow forced myself into action, inducing a spell of tachycardia, which really doesn't bother me as much anymore as it used to, and right before I was going to call someone to get some more definitive information about whether there was any chance I might not have to move in 3 days, I looked up the sale date one last time online, and found out the foreclosure sale had been postponed, again, for another month! Same reaction as last time, simultaneous irritation (coupled with an urge to scream) and relief, or something like it. I still haven't sold any of my stuff, still recovering a bit from last week's manifestation of what I have concluded to be the Coxsackie virus, and exhausted from attempting to subdue a massive flea infestation...So gross, I actually vacuumed pretty much the entire place, fear of inducing months of pain and discomfort from my screwy back be damned. (Not only am I totally grossed out, as anyone would be, by the site of the dozen fleas that jump on my socks and legs everytime I got up to get something, but with my immune system so wacky, and knowing they can transmit parasites...eww. Not what I need!)

My friend was over by then, and bless her, she helped me vacuum again, and kept me company while I started the laundry (didn't want to risk any hiding bugaboos in my dirty laundry re-infesting the place.) Later, I went to the store, finally made it to my beloved TJ's before closing, and by the time I got home, I felt like every muscle in my body was spazzing out. (Unusually humid weather for Southern California probably also not helping.)

But thank goodness, I have time to rest now! I was annoyed yesterday because I finally felt like I had most everything figured out, and now have to re-work it all. I got my P.O. Box, had reservations for a truck and storage, most of my breakables packed...and the timing for going to visit my cousin worked out perfectly. ( A couple of weeks before her kids got home from visiting their father to rest up and get in a better mindset. I used to adore kids, and them me, but nowadays, they just overwhelm me, and I can't seem to get a handle on how to relate to them...but maybe it's just from lack of practice?) Oh well, we'll see how it pans out. I guess it will work out better, as I will have more money (provided I sell the stuff!) may not have to stay at my brother's before I leave, and have time to take care of business like getting to my rheumy for refills, make the county pay for my PT they are trying to weasel out of, talk to my attorney, and yell at Social Security about why they haven't sent my attorney their files yet (or whatever else I can think of that will make me feel better about their failure to make good on using my tax dollars to help me in my time of need).

Plus, this gives me more time to earn miles! Okay, first rest is priority, I'm horrible at it, and today I think I felt the fever coming back. I still look like an off-color spotted duck, and the spots had turned darker (and freakier looking!) are itching and sensitive to the touch now (almost like blisters). (I did manage to fade them a bit by soaking them tonight though...)

Also, my brother is talking about coming up with a plan to help me with my quest to get better, although it might have made more sense say, sometime in the last 4 years when I actually had a free place to live, but that's something...Honestly, at this point, all I want is to be somewhere stress-free and peaceful with the occasional person to make me laugh. I really think that would be the best medicine...

Monday, July 9, 2012

Spotted and still feverish...with strangers.

Yuck. Spots, spots everywhere.
(They look worse in person, but I gave up trying to do them justice.)

Taking a break. Just got back from escorting a nice Asian gentleman (I wish I could describe him further, but all I have are impressions, too dazed & tired) to the store to get change for a lamp that he bought from me. He'd come for my bed & fax, but changed his mind, and got the lamp, which I hadn't thought about selling, instead. And I didn't have change, so...we went to the store around the corner, and he told me there was something wrong with my car and described, pretty much, exactly what was wrong with it. (I know this, because I already knew all this.) Very warm fella, good energy, I found myself thinking as I walked back to my place. Then I realized my fever was back with the vengeance. I don't know if it's a prelude to delirium, that no one talks about because if they get delirious, they don't remember, or they don't notice cause they're home in bed, resting, but I keep finding myself in public, feverish (like, grocery-shopping & stuff...after a week straight of fever you have to go out for food & drink sometime) and it's kind of amusing, everything seems a bit unreal, and right now I want to giggle! (It's so much more amusing like this.) Or maybe it's a new defense mechanism... I just don't feel overwhelmed with stress anymore, just don't feel the stress. It still all seems crazy though. I lost an entire week in bed trying to get rid of this darn fever, slowly turning into a flesh and pink-dotted version of  a British dessert dish...And somehow I'm going to move this weekend (I think). Maybe I'm just okay because I have a plan now, or maybe I'm just too tired to care because I didn't realize that my nifty anti-oxidant acai-berry popsicles I've been slurping down to cool down give one energy and alertness one does not want at 4am when one wants to get up early...and I just need a nap. Ugh. Some new stranger is calling my phone and I don't want to get it, even though I swore I wouldn't miss another call because I really need to sell some of this stuff NOW...But I think I might get really, inappropriately giggly if I have to deal with another person who is very nice but wants my stuff for dirt-er cheap than I'm selling it...I swear, I'm not losing it. I'm just sleepy and feverish! (And spotty!)

This is what a Viral Exanthema looks like

Fancy doctor speak for a Viral Skin Rash. I just thought I'd share the eww factor.

Thursday, July 5, 2012

Feverish Ramblings

Well. I hope everyone had a Happy 4th of July! Myself, I had hoped to get down to the beach (a 15 minute drive that I usually don't have the gas to spare for, so a treat!) to see the amazing fireworks (from a picturesque little cove, waching the pyrotechnics reflected over & over in the waters, and the smoke gathering like in the canon fight in Pirates of the Caribbean at Disneyland) but I've spent most of the week nursing a fever. Low grade, only a couple of degrees mostly, but enough to make me nice & uncomfortable, alternating between either uncomfortably warm, or unreasonably chilled. Fun times.

On the other hand, maybe this is a good thing? I've been taking two immune modulating supplements called Inosine and Samento. For awhile there, I kept running out of one or the other, so last week when I got them both, I thought I'd be feeling better, but...nope. My suspicion and hope is that maybe the fever is a sign that they are working, that they've weighed heavily enough on the correct side of the seesaw that is my unbalanced immune system and the fever is, a sign that, as my doctor described, "the heavy artillery" are being ordered out to slaughter the infections causing such grief.  (I guess I should note that I also added some Anise Seed and Hyssop, the first for it's properties as a nerve tonic, and the second for it's anti-viral and stomach-soothing properties now that I think of it, maybe they are what finally tipped the scale?)

The bummer is, that I had A LOT planned for this week. An entire College-Ruled notebook page full. The first day, I really needed to go out and get food and load my monthly allowance from the county onto my Debit Card so I could at least pay bills online and reserve my storage and PO Box, plus get some food, and it was an interesting experience walking around the grocery store feverish and on pain medication, made me very jumpy, but I got it done. I was also having a lot of nerve pain, that scorpion-like sheath feeling on my c-spine, pain in the back of my leg and down to my right heel. The next day that was all gone though, and I found myself regretting the thought the day before when I was surprised that my stomach wasn't acting up at all...Severe cramping & discomfort along with the usual nausea and queasiness. And still needed to take acetominophen every 4-6 hours to keep the fever from going up. (Like it did Monday night; last time I had fever that bad was a few years ago when I had a kidney infection; it's hard to describe, this awful desperate feeling that makes you toss and turn without knowing why or being able to put your finger on what exactly is wrong; like a prelude to delirium, my brain started to feel odd and I wondered if I'd be able to get myself to the hospital, because come on, who calls 911 for a fever, right? Thankfully, I guess the acetominophen kicked in shortly after, and I suddenly felt calm and able to breathe, and my head didn't feel so tight, I guess the thermostat being turned down, haha.)

But yeah, what a pain in the butt! Any exertion and I'd start feeling feverish again. (Even being on the computer too long.) And now, I'm out of Inosine again, Samento is on it's way to being gone, and I just want to scream (because when I run out I also get sick, mostly stomach stuff). And I probably have to move next week. Also, I'd spent the weekend convincing myself that my cousin might get what she hoped for, and we would have a blast if I went to visit with her for a bit, because truth be told, I'm terrified that not only will I NOT be up for doing anything fun, but I'll be a crappy guest, and they'll end up not liking me. I mean, who am I kidding, I could barely keep up with the people helping me do my laundry and pack last week...I'd feel bad watching people do dishes & such and not helping, but there's a reason I needed help getting my own done...I get so exhausted being around people and trying to pretend to be well and not feel bad or awkward for having to sit or rest, I hate having people watching when I get up all stiff like an old lady. Have having to excuse myself to go lie down, hate this all. I wish I had the money to just go off to South America, rent a place to rest and be alone and maybe get a little better so I can deal with being around people better... $300 a month apparently is what it takes. I hate this situation. My brother offered to let me stay at his & his roommate's place, but only for a couple of weeks, not sure what difference that would make...(Well, maybe an airline ticket to get me further, got miles coming, but, I need cash, too...) I know this probably sounds crazy, maybe it's the control freak in me, or too many neuroses...sometimes I think this illness is also severely putting a cramp in my ability to not appear as crazy as I am, haha!

I wish I could go stay at a hospital somewhere, like when they sent chronically ill people or people with TB to sanatoriums in Switzerland or in warm climates back in the day to convalesce...don't they have those anymore? I'm pretty fearless, still, I don't mind going to a foreign country, but I'd prefer to have some extra cash considering how not well I am...I don't think I'm being pessimistic when I fear that I won't do well after the plane trip and need to stay in a hotel for a day or two or there before proceeding to find transportation to my destination... Maybe I don't have anything to lose, it can't be worse than staying here, spending what little money I have on motel rooms and ending up sleeping in my car and getting sicker...Back again to the conclusion, I just need to go. Somewhere. Anywhere. There's nothing for me if I stay, even if I found a place, it's not worth the misery, and I want to get away from the dysfunction...

Saturday, June 30, 2012

Gift Miles Registry Update, & The Question of Asking for Help

Well. Apparently my U.S. Airways Gift Registry is not working! I had a really hard time finding support for it to, all there seems to be is an e-mail address. No matter, I actually found one I like a bit better, for United Miles. Here is the link:
Hope for M.E

I confess, I had some moments of wavering resolve earlier today. I had told me brother about it, and he said that he didn't think people would understand, which sent me down into that spiral of shame, followed by hurt, anger, and sadness. (It's not the fact that many people can't afford to help, that I understand, I think it's the fact that it seems like people won't think it's a worthy, that's what really hurts. I mean, I'm really sick, I'm about to be homeless, and I've been through hell...I know I'm not dying, but I'm certainly not living...and still, it's a fight every day I am alive...)

It's been years now that I've spent dealing with my health issues and the wreckage they've turned my life into, mostly on my own, and I've had to come to terms repeatedly with what seems to be the hard cold facts of the matter: most people just don't care. It makes them uncomfortable, bums them out, they're too busy, or worse, they think I'm a liar, that I could get better if I really wanted to, if I tried this potion, that therapy (and believe me, I probably have) went to bed early, exercised more, or just stopped thinking about it. (Tried those, too! Some even Against Medical Advice!) What they don't understand is, I've tried it all...I guess if they really knew me, they'd know what a stubborn, determined person I am. How much I wanted for my life and that I'd never give up without a fight, no matter what the diagnosis. They'd know I tried going back to work repeatedly, tried working from home, that I've researched like crazy, hunted down every resource I could find to get myself free or low-cost medical care and medicines, and just been to hell and back in general, just trying to survive. It didn't help that I seem to have lost about 50 Twitter followers since posting my link. (But then, there's a reason when I forgot my old Twitter password, I swore I would not focus on my health issues on my new one; I wanted an identity outside that of patient, so maybe that wasn't the right audience.)

But I think what hurt me most while contemplating all this was, that I think part of the reason people seem to get turned off or not take it seriously is that I'm asking for help for myself.I really think that's part of it...Maybe people figure if I was really sick, wouldn't my family and friends be doing everything they could to help me? Wouldn't they be telling people about it and wouldn't they have joined me in my efforts to spread awareness? (Nevermind that it's extremely difficult to make OR keep friends when you're this ill.) I know if it was my child, or even sibling, I'd be organizing my family into a team to do the Awareness Day walks & activities, be raising funds for research, just doing everything I could, but I guess not everyone's cut from that mold, and I have to say, at least my two closest family members do understand I am sick and offer me what moral support they can, limited though it may be. (While a third seems to have happily convinced himself that I am well enough that they can stick me with all their bills & problems and leave the country, but that's another story.) 
So I kind of get it, but I still feel like they do me a disservice by deliberately keeping my illness hush-hush and that this encourages people to form misguided beliefs... Maybe it's just me, but I would want to know if any of my family was wanting for basic needs...I'm not a secretive person by nature, so after years of being dead broke, scrimping and scraping for things like food, clothes, gas and medicine, it's surprising to me that they could plead ignorance.

I don't know why asking for help is such a shameful thing. So I do admit to feeling a bit raw and exposed for a bit there, even contemplated giving up. I'm still not sure if I want to actively pursue this, I was much happier getting my own miles, haha. Actually, I worked on that for a bit earlier, and I think it's what perked me back up. Plus, to be fair, I had a wonderful demonstration that there ARE people out there who care, however much of a freakish hermit I might be with my freakish illness that no one understands, I had some great people come over yesterday (after days of insistence) and perform the miracle of cleaning my kitchen (my most overwhelming challenge; try washing dishes with back problems, tachycardia, and blood pressure that drops when you're standing up and a nervous system that doesn't like heat!) AND they helped me pack up my mother's China. Ironically, I actually find it hard to accept help! (I still hate not being completely self-sufficient. Must be the first-born thing.) And it makes me squirm a little, but at the same time I am SO grateful... Being ill is so complicated! Aside from the physical, it can be a psychological wormhole, I swear. Maybe I'll give up on the miles registry. Maybe I won't.

Friday, June 29, 2012

My New Favorite Site, & New Drug Research

I found this site when googling for a quick description of M.E. for my mileage registry, and I have to say, i was really impressed. I think it is my favorite new M.E. site: : The National Alliance for Myalgic Encephalomyelitis

It describes Myaglic Encephalomyelitis in terms that more accurately reflect the impact and severity of the disease, including key quotes by respected experts such as:

" there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to  that of patients with late-stage AIDS, patients undergoing chemotherapy, or  patients with multiple sclerosis."


"Myalgic Encephalomyelitis (M.E.) is a neuroimmune disease with serious immune and cardiovascular abnormalities with resulting serious CNS (central nervous system) consequences due to brain injury.  The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer.  The pain, cognitive impairment and exhaustion are often literally unspeakable.  Most times M.E. strikes relatively quickly (within hours, days, weeks).  Once active and productive children and adults are robbed of vitality, with disability ranging from completely bedridden to somewhat functional.  Variable disability usually progresses to premature death."

Now, that last sentence may sound like an exaggeration, but I have read/heard that from many doctors; plus, it's worth looking at the list of related illnesses on the left side of this page, and my mentioning that that is only a partial list of the health problems I have developed in just the last few years...sometimes I personally feel like I am physically coming undone, and I may just scream if I am referred to another specialist and prescribed one more pill or treatment.

Anyhow, I commend the authors of that site and am very grateful for the thorough job they did! I'm going to go update my links!

Another thing I found that was interesting, was a link to a study being done for a drug that would treat the autoimmune-type aspects of the disease, here that is:
 (It's an existing drug called Rituximab that treats diseases such as Cancer, Leukemia, Multiple Sclerosis, and Lupus.)