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Tuesday, August 31, 2010

Medical marijuana TV spot.... 

The first television advertisements for medical marijuana are now on the air. Got this from CNN:

First pot commercial airs on TV

Interested to see if any stations in South Dakota would air similar spots if the medical marijuana bill passes here. I'm thinking probably not.

Monday, August 30, 2010

And you thought REGULAR hospital food was bad.... 

This is from the latest Celiac.com newsletter. I have to admit I hadn't even thought about this.....

Trust but Verify: "Gluten-free" Hospital Meals May Not Be Gluten Free

Luckily, I haven't been hospitalized overnight since 1999, prior to going gluten-free, but with all my dietary restrictions, I'd probably just ask if I could live on Boost while in a hospital. Of course, best case scenario would be never having to go to a hospital in the first place, heh heh.

Gluten free Asian you can make at home.... 

Got this from the Celiac.com newsletter. Looks promising and yummy....

Asian-style Fried Noodles

I do a fair amount of stir fry. Love the rice noodles but don't have lots of recipes for them. This would also give me an excuse to use the fish sauce that has been sitting in my refrigerator for months, heh heh.

Sunday, August 29, 2010

Just a (somewhat) friendly reminder! 

Link courtesy of a Facebook friend (also check out this site's Facebook etiquette tips). If everyone who received a mass forward e-mail followed this advice, we'd save a LOT of panic and flat-out lies from going viral:

Snopes it before you forward it

If you don't pass this message along to 10 BFFs, guess what? Nothing will happen to you except maybe an e-mail in-box full of bogus warnings, Photoshop distorted pix and urban legends that you've already seen a million times.

Thursday, August 26, 2010

Still seething and wishing the universe would lighten up on me a bit..... 

I no longer have many outlets for handling stress. Thanks to gastroparesis, I can no longer eat myself into a coma. I can no longer storm out of the house and walk really fast for a couple of hours to clear my head and get those feel-good endorphins going. If I were to throw something in anger, all it would do is cause me additional physical pain. I am too broke to either purchase or download a ton of new music. I can't drive to the mountains for an "escape" day because I now live on the seemingly endless prairie. I am stuck in a house in a city and state I don't like, far away from my family and most of my friends, unable for the most part to feel very useful. I did get fed up with sitting around and attempted to dust away the cobwebs in the living room and Windex the front window, which naturally aggravated the compressed disk in my back that I re-injured five weeks ago. The only helpful outlet I have is venting on the internet. So here goes.....

First, there is the fore-mentioned back injury. I had FINALLY stopped having daily pain from it for about two months following ten months of agony. All I was doing was reaching for a container of cinnamon, and BAM, the dagger pain in the spine returns! I immediately iced it and started the routine from last year of muscle relaxants, stretches, Icy Hot patches at bedtime, extra massage therapy and chiropractic, TENS unit, etc. It's not as bad as last year's injury, but I cannot get it to settle down. I am frustrated because I am doing everything I should do for it with very little reward after five long weeks.

The back injury, of course, brought on a flare which will not let up either. It is interfering with my ability to enjoy social activity with Dan's family, like our nephew's third birthday party. Last week, Dan's grandfather's wife fell and broke her shoulder. She was put in a rehab facility, leaving no one to care for her husband. Dan's grandfather had to fly by himself from Florida to South Dakota so Dan's mom could take care of him. While it is really cool that Dan's grandfather is in town and that several of his family members are coming to visit this week, I seriously do not feel up to the get-togethers that are going on. I will attend, of course, but I hope I am not a complete zombie during them and that they don't make this flare even worse.

Earlier this week, my dad called and told me that the doctors had found a tumor on his bladder. They are making plans to remove it, but I don't have details on that yet. This comes on the heel of my step-mother's recent back surgery and hospitalization for double pneumonia. Being two states away, I can't visit the hospital and don't really know what's going on unless someone calls and tells me. Not that I am any sort of caretaker anyway, but still.

Then yesterday, the whole long-term disability insurance company and lawyer debacle, the full story of which is a few posts down. I cannot seem to stop brooding about it. I don't want to believe there is nothing left for me to do even though that is the truth of the matter. I've had fleeting thoughts of writing to writing to the Democratic Congressman from South Dakota and/or President Obama, but I doubt it would do any good. It would probably just wear me out further.

And today, Dan came home from work with a form from his employer stating that they are changing dental insurance in just five weeks. This new plan won't cover root canals, crowns or gum surgery for the first year. This really SUCKS because Dan was supposed to have gum surgery this fall! And it's not particularly good news for me either because having Sjogren's means I never know what's gonna happen with my teeth. I had five crowns and four root canals in the space of just three years. I take excellent care of my mouth, but I can't guarantee I won't need work on any of my teeth prior to October 2011.

I usually can handle a stressful event after a day or two, but this a bit much. You know those old variety show acts where there's a guy spinning plates simultaneously? I have too many doggone plates in the air right now, and nowhere to hide when they come crashing down.

Tanka Bar Product Review: a browser life exclusive (for now)! 

I wrote this a month ago and submitted it to But You Don't Look Sick, but I think they are having technical difficulties? Anyway, here it is in its entirety:


Product Review: Tanka Bars

When we're on the go, many of us grab a protein bar as a snack. While a protein bar can provide quick energy, it also can provide quite a bit of sugar and an equally quick post-energy letdown, not to mention some dubious chemicals which make them questionable for certain medically necessary diets. I have found a healthier option which not only benefits the body, it benefits the economy of people in great need.

The Tanka Bar is made by Native American Natural Foods in Kyle, South Dakota on the Pine Ridge Indian Reservation. It is based on a traditional food called wasna, which was a combination of buffalo and chokecherries used as a trail mix. The modern incarnation, the Tanka Bar, has prairie-raised buffalo meat and cranberries as the primary ingredients, which give it a beef jerky-like flavor (but not tough like jerky and with much less sodium) with a hint of sweetness.

Buffalo meat is quite nutritious as it is naturally lean, with even fewer calories, fat and cholesterol per ounce than skinless chicken. Each Tanka Bar contains no trans fat, only 70 calories and 7 grams of carbohydrates with 7 grams of protein and contains no hormones or nitrates. The bars are shelf stable for at least a year and are individually wrapped so they are quite portable.

Tanka Bars have a slightly unusual but very pleasant taste. I carry a bar in my purse and one in my gym bag at all times in case I find myself having to go too long between meals. They are a handy backup in social eating situations when I can't be certain that what is being served is safe for me. And I sneak them into movie theatres so I have some protein to go with my popcorn.

Native American Natural Foods has recently expanded their product line to include a spicy pepper blend, which I have not yet tried, and their original recipe in bite-sized nuggets that come in a resealable package. Tanka Wild is a snack stick I really love as it has the same ingredients as the bar but with the addition of crunchy wild rice. Two products on their website that I have not yet seen in stores are summer sausage and hot dogs, both made from buffalo. I am particularly keen to try the hot dogs as they have half the fat, no corn syrup or any of the fillers you find in most beef products.

According to the company's website (Tanka Bar - Real Food - Real People), "Our products are certified Gluten Free by a third party accredited laboratory and tested below the minimum detectable quantity of 10 parts per million. One part per million is equal to one milligram of gluten per kilogram of sample product." They are also free of the these common allergens: nuts, fish, soy, eggs, MSG and shellfish. Only one of their products, Tanka hot dogs, have any traces of dairy. Their products are diabetic-friendly.

The Tanka Bar Spicy recently won an award from "Backpacker" magazine as their Editor's Choice 2010. The availability of Tanka products is rapidly expanding, now being sold in 4000 stores nationwide including REI, an outdoor recreation chain. You can do a search on the Tanka Bar site to find a retail location nearest you. I did a search and found to my surprise that my local drugstore now sells their products.

Native American Natural Foods is a company formed by the Oglala Lakotas on a reservation where sources of income are quite few. By returning to the buffalo, their traditional food source, and using sustainable methods with minimal processing, they honor the earth and their own people. And by making 21st century products available to the public at large, we all can benefit.

From the company's website: "'Tanka' is used in reference to delivering your best with all your heart, mind, body and spirit. It is the choices that you make and the actions that you take to be who you are. Whether you're Native, white, black, yellow or brown, it is your ability to overcome, to extend a helping hand for those in need, to defeat racism, to protect our Mother Earth, and to love all others on our planet. It is your ability to acknowledge 'Mitakuye Oyasin' -- we are all related." I encourage you to visit their site and click on the "Buffalo Nation" tab to learn more about the Oglala Sioux tribe, its history and how the buffalo ties into its culture.

To whom it may concern.... 

Got this link from a Facebook friend. Handy for those of us with fibro-fog or for those whom school was a very long time ago, heh heh.....

24 Things You Might Be Saying Wrong

I used to be SUCH a stickler for grammar. It made me a good proofreader. But now I'm lucky to complete a sentence without either leaving out a word or forgetting what I was saying halfway through....

Wednesday, August 25, 2010

FURIOUS at LTD company and lawyer!! 

I rarely get this mad anymore, but if I don't vent I may just explode!

When I could still work, I had long-term disability insurance coverage through my employer. This is a private policy that is supposed to pay a portion of your previous income should you become permanently disabled (they require you to be approved for SSDI as proof, which I was). Sounds like a good thing, right? It should be, but in my case, it was an enormous waste of money and spoons.

Not all of these companies are on the up and up. My particular company has been investigated many times for pressuring their employees to deny claims they know to be valid. This keeps their rates down, which makes them more attractive to employers.

I applied for benefits in 2005, and I was harassed repeatedly by this company while my claim was being processed. They had my poor rheumatologist fill out the same forms over and over to prove I was really disabled. They would call just to make sure I was really at home and not out doing something an able-bodied person could do; I think they even watched my house.

Then in early 2006, they tell me I must undergo "independent" medical exams, which are physical and mental tests provided by "experts" of their own choosing that they pay under the table. I engaged the services of a lawyer in an attempt to be evaluated by someone who knew neither me nor the insurance company, but I was told my claim would be denied if I did not go to THEIR "experts". Well, you can guess what happened: both the "shrink" who did the neuropsyche exam and the trainee who did the functional capacity exam (a physical endurance test) said I was faking. This was despite two highly regarded rheumatologists, one a nationally known expert on Sjogren's, who testified that I was disabled.

I had the misfortune to have to move to South Dakota at the end of 2006. I went to a rheumatologist there who knew next to nothing about Sjogren's syndrome or fibromyalgia and said in his notes that neither is ever disabling. The insurance seized upon this single visit as the "proof" they needed that I had no physical illness at all. They discontinued benefits three years ago, stating that I was mentally ill, which they don't cover.

I attempted to file suit. The lawyer was at first was enthusiastic about the case. He was familiar with the practitioners the insurance company employed to do their bogus "independent" exams and thought we could either get my benefits reinstated or come to some kind of settlement.

But time passed, and each time I talked to the lawyer, he was less and less confident about my case. Apparently, some very similar cases had been denied. He mentioned a 2008 ruling discrediting independent medical exams as basis for termination of benefits if the experts performing the exams are paid for by the insurance company, but he FAILED to tell me that it wouldn't apply to my case because it pre-dated the ruling.

The lawyer, though, kept saying he would file my case, and I would check in to see if it had been done yet. Then he stopped returning my calls. Knowing that the statute of limitations for filing suit was rapidly approaching, I started calling daily and leaving messages.

I finally reached him today. He said that he had been waiting since April for me to submit a $350 filing fee, which he had NEVER mentioned to me and is not in any of the paperwork I have from him. And he said not to waste my time with this case anymore because it was certain to lose.

THREE YEARS is wayyyyy too long to sustain false hope! I am so angry I would cry if I could produce enough tears. If I had been able to stay in Colorado with my good doctors, I would have had a chance at seeing this thing through. It doesn't even matter that the Mayo Clinic re-confirmed my diagnosis of Sjogren's in late 2007, because it came after the a-hole doc in Sioux Falls said I wasn't disabled. All it takes is one measly naysayer to ruin your financial future.

It's not just infuriating that the insurance company can legally get away with doing this to me, it's that they can do it to ANYONE who does not have an immediately life-threatening condition. If you have fibromyalgia, then you can pretty much count on not getting ongoing benefits from a long-term disability insurance company, because they can deny you based upon your "subjective" symptoms and purported mental impairments. Why is it that Social Security, who is notorious for their denial of claims, approved my disability while a private company would not?

And the lawyer should never have taken my case. I could have done my crying three years ago and figured out some way to survive financially by now instead of clinging to the hope that I would be able to make up for the Mayo Clinic debts and all the stuff my measly medical insurance won't cover. My husband comes home from work in about half an hour, and I'm going to have to tell him that he'll have to do everything he can to keep his job because if he doesn't, we'll lose the house.

I feel like these LTD companies prey upon the disabled, and nobody seems to care. I'm pretty tough emotionally, but it does add serious insult to injury to be told that you're faking and that there's nothing you can get them to do to change their ruling (I did the appeals and they were worthless). The finally broke me. I feel about as significant as an amoeba. I hope these charlatans get what's coming to them, if not in this life, the next.

Tuesday, August 24, 2010

How would you rate YOUR illness? 

Here is a detailed self-assessment for M.E. that can be used to track symptom severity. It comes from the Hummingbird's Guide newsletter:

The M.E. ability scale

Overall, I tend to function at 20-35 percent capacity. It varies of course according to activity level above and beyond my daily routine (for example, meeting with family for supper can wipe me out through the next day or even beyond). The periods of least exacerbation are, unfortunately, ones where I do not leave the house, exercise or spend more than two hours at the computer or reading or watching TV and where I rest approximately 12 hours.

Thursday, August 19, 2010

A plethora of fibromyalgia articles..... 

Some of my helpful Facebook friends gave me links to articles about a study about using tai chi as a fibromyalgia treatment. Those links led me to other links, so here are the four most interesting that I found:

Fibromyalgia? Try tai chi

This one is a series of slides and texts that break down the symptoms of fibromyalgia in easy-to-follow terms:

Chronic Pain and Fibromyalgia: What's Normal, What's Not

This one is pretty exciting to me, actually. It makes complete sense to me that fibromyalgia would be tied in with the neurotransmitter dopamine:

Brain Imaging Study Sheds Light on Fibromyalgia

And I know this subject is controversial, but this is a no-nonsense look at it:

Medical Marijuana May Help Fibromyalgia Pain

I have a vested interest in medical marijuana because my state is going to have it as a ballot issue in November. Not only might it help with my pain, it might also relieve my daily nausea caused by gastroparesis. So I will be keeping a close eye on this one.

A closer look at the neighborhoods surrounding Ground Zero.... 

Excellent link sent to me by Stacy. Be sure you read the text below the pix:

"Hallowed Ground"

Part of having respect for those who perished, no matter how tragically, is to realize that life does go on. It does not erase the tragedy, but we should not remain mired in fear and bigotry forever.

Sometimes fibromyalgia brings about POSITIVE change.... 

Got this off of Facebook. It's originally from the National Fibromyalgia Association....

My Fibro Story by Adrienne Dellwo

I know I would have a lot more trouble coping if I didn't have a blog, Facebook, or some sort of outlet for the articles I write and the photos I take. Unfortunately, I do not possess the energy to make an actual career out of them, but it's better than nothing.

Remember the Constitution? 

It would seem that some politicians have conveniently forgotten the part about freedom of religion. Link courtesy of Robert....

Fact Check: Islam already part of WTC neighborhood

I wonder if any of the people doing the protesting and denouncing have actually visited a mosque, or had a civilized conversation with a Muslim? I have done these things, and I know that for the most part, these are people of peace. Radical extremism is radical extremism and is not generally a hallmark of most major religions. If someone wanted to build a new church near the site of the Oklahoma City bombing, would anyone be protesting just because the man who committed the crime was a Christian? Of course not.

Wednesday, August 18, 2010

Yayyyy, even MORE Rush! 

NOTE: I saw this song performed in Kansas City in 1986 or 1987, and it was an extended version lasting about 15 minutes! Fantastic! You couldn't even see Neil Peart because he was completely hidden by all the drums, chimes, gongs, etc. on stage.


Tuesday, August 17, 2010

Yayyyy, Rush! 

In case you forgot what talented musicians they are, here's a video posted by a Facebook friend:


Monday, August 16, 2010

Why the resistance? 

Got this article from the Celiac.com newsletter. Apparently, even though there is a known genetic link between Type 1 diabetes and celiac disease, scientists STILL can't agree whether it is worthwhile to test for both:

The Celiac Disease Type 1 Diabetes Screening Controversy

Checking Type 1 diabetics for celiac disease would not be that costly, and if the result is positive, going proactively gluten-free could save a person permanently bodily damage. What's wrong with that? It baffles me that there is such a strong debate about this, as if going gluten free is a terrible affliction akin to torture.

Sunday, August 15, 2010

Help with making pain, pain go away..... 

Got this article off Facebook's Chronic Pain Info page. It contains the basics for how to handle long-term pain....

Tips for Dealing with Your Pain

It has been so long since I've tried anything new specifically for pain that sometimes I forget how confusing and frustrating the process was. Compared to where I was, say, seven or eight years ago, I'm practically Zen about it now, heh heh.

REAL handicap accessibility when traveling.... 

Found another good article on But You Don't Look Sick. This one is about negotiating handicapped accessibility, especially in foreign countries....

Traveling Thoughts Through a Different Set of Eyes

I am lucky enough to not be completely confined to a wheelchair. But I have noticed that a lot of hotel rooms that are supposedly accessible are such a tight fit that it must be VERY difficult for a wheelchair-bound person to negotiate them without help.

Chronic illness affects more than just the person who has it.... 

Wonderfully written article that made me laugh and cry. Courtesy of But You Don't Look Sick.

Diamonds, Capes and Spoons

I often think of what Dan has to put up with, having a wife who is sick 24/7, who tries to be cheerful but doesn't always succeed, who had promised an egalitarian marriage but now cannot deliver. He is MY superhero.

It CAN be done, if you are well-organized.... 

Traveling halfway across the world, I mean. Article courtesy of But You Don't Look Sick.

Flying: You'll get there, besides isn't the journey the point, as much as the destination?

I did submit an article for the site a few weeks ago but haven't heard back. I may double-check to make sure it was received (it's a pretty busy website). Or I may just go ahead and post it here.

Why we shouldn't privatize Social Security.... 

Obama's views on the subject.


Saturday, August 14, 2010

Why parties aren't fun anymore.... 

Found this article on Facebook. It explains why people with fibromyalgia get sicker in chaotic environments....

Noise Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome

I was at my three-year-old nephew's birthday party on Wednesday night. After he opened his presents, two people were removing toys from boxes and assembling them, my nephew and his sister were squabbling, two other people were conversing, and my mother-in-law was asking me something, all at the same time. Even though I could hear what my mother-in-law was saying, I could NOT understand a single word because I couldn't filter out all the other noises. It's like she was speaking in a foreign language. This happens to me a lot.

Friday, August 13, 2010

Best gluten-free food in the world! 

Okay, maybe I haven't actually made a worldwide comparison. But I was poking around to see if my fave Denver restaurant/bakery was still open, and it is!

Deby's Gluten Free

You can order their bakery products online. Their mock rye bread is to DIE for, and I usually hate gluten-free bread! If I get a chance when I visit Denver next month, I will definitely snag a loaf.

Thursday, August 12, 2010

Will gluten-free weddings become more common now? 

Chelsea Clinton's wedding reception was gluten-free and (mostly) vegan. Here are two articles on the subject:

Chelsea Clinton: Let them eat gluten-free cake

Chelsea Clinton Serves Gluten-Free Bread at Wedding Reception

It would be wonderful to someday go to a wedding and NOT have to pre-order a "special" plate from a caterer, or, worse, sit around and watch everyone else eat the cake, which is I have been doing for the past seven years. I avoid all church potlucks, all events which include a standard meal unless I can bring my own food because I simply don't have the energy to make a big fuss about it. Tonight, for example, I went to my 3-year-old nephew's birthday party, and while everyone else had cake and ice cream, I ate some grapes I brought from home. I don't want people who are healthy to have to make concessions just for me, so I don't usually say anything, but at a gluten-free wedding, I could pretend at least for a little while to be normal.

Tuesday, August 10, 2010

Refusing to face the facts of celiac disease.... 

Another from Celiac.com's newsletter. This is an EXCELLENT article on why we don't want to get tested, and once diagnosed, why we don't want to believe it:

Dealing with Denial by Danna Korn

I will now admit that I fit the profile described in #1. In 2002, a friend with celiac disease suggested to me several times that I get tested. I refused because I was was OVERweight, not underweight (being overweight can mean your body is not processing nutrients and thinks you're starving so it holds on to every pound), and I figured that I just had the usual irritable bowel syndrome that goes along with fibromyalgia. Then in 2003, I got VERY sick on a trip to South Dakota in April and again on a trip to Canada in August. What did they have in common? I was in situations where a lot of sandwiches and desserts like cake were served. When I spent three straight days in agony because I'd had about five servings of gluten in a 24 hour period, the light bulb went on. I went completely gluten free a few months later and when my "irritable bowel syndrome" symptoms completely disappeared in January 2004, I knew I'd done the right thing and have never regretted it.

One of the possible extremes of celiac disease.... 

Got this in the latest issue of the Celiac.com newsletter. Had never heard of it before but thought it was worth sharing:

Celiac Crisis: A Rare But Serious Complication of Celiac Disease

This has got to be scary as heck for whomever must go through it. I'm fortunate I never got that sick and volunteered to go gluten free before there was a chance for serious malnutrition to set in.

Sunday, August 08, 2010

They took our Kodachrome away! 

Saw a version of this story in today's local newspaper. It marks the sad passing of an era....

Exposed: The Last Roll of Kodachrome

What pix would YOU take if you had the very last roll of Kodachrome? I think I would find the most colorful places and people in the world, because that is what made the film so famous and what I will miss most about it.

Rave of the Day for August 8, 2010: 

Time for some funny stuff! These giggles courtesy of Feathers....


The Hormone Guide

Women will understand this! Men should memorize it!   

Every woman knows that there are days in the month when all a man has to do is open his mouth and he takes his life in his hands! This is a handy guide that should be as common as a driver's license in the wallet of every husband, boyfriend, co-worker or significant other!

DANGEROUS: What's for dinner?
SAFER: Can I help you with dinner?
SAFEST: Where would you like to go for dinner?
ULTRA SAFE: Here, have some wine.

DANGEROUS: Are you wearing that?
SAFER: Wow, you sure look good in brown!
SAFEST: WOW! Look at you!
ULTRA SAFE: Here, have some wine.

DANGEROUS: What are you so worked up about?
SAFER: Could we be overreacting?
SAFEST: Here's my paycheck.
ULTRA SAFE: Here, have some wine.

DANGEROUS: Should you be eating that?
SAFER: You know, there are a lot of apples left.
SAFEST: Can I get you a piece of chocolate with that?
ULTRA SAFE: Here, have some wine.

DANGEROUS: What did you DO all day?
SAFER: I hope you didn't over-do it today.
SAFEST: I've always loved you in that robe!
ULTRA SAFE: Here, have some wine.


~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
13 Things PMS Stands For:
1. Pass My Shotgun
2. Psychotic Mood Shift
3. Perpetual Munching Spree
4. Puffy Mid-Section
5. People Make me Sick
6. Provide Me with Sweets
7. Pardon My Sobbing
8. Pimples May Surface
9. Pass My Sweatpants
10. Pissy Mood Syndrome
11. Plainly; Men Suck
12. Pack My Stuff
and my favorite one.
13. Potential Murder Suspect
 
Forward this information to all of your hormonal friends and those who might need a good laugh... and men who need a warning.

And remember: Money talks but Chocolate SINGS!

Saturday, August 07, 2010

More disabled people may be forced into nursing homes..... 

Saw this article in my local newspaper today. I knew there were problems in South Dakota, but it is quite sobering to see just how widespread the crisis is:

Recession-battered states cut funding for the disabled

Most disabled people want to live as independently as possible. It is probably not intentional on the part of the states that are cutting back, but they are certainly giving the impression of marginalizing the disabled even further, treating them as if they don't matter and should be hidden away. That's what used to happen routinely not so many decades ago, and it would be a travesty to return to this sort of treatment.

Shorthand for medicalese.... 

This comes from But You Don't Look Sick. I don't know which is worse, that I didn't know most of these acronyms or that I don't even know the ones for my own ailments....

Helpful Medical Abbreviations

On the project front, I am now copying the pix from the old web pages I created using .Mac, which is now defunct. I am putting them into iPhoto (they originated from there but disappeared after my hard drive crashed in 2006) and then making Facebook albums out of them so they will still exist somewhere in public should the old .Mac pages become completely inaccessible.

Which comes first, deconditioning or limitation of activity? 

This is the third part in a series of articles on exercise intolerance. Courtesy of the CFIDS newsletter....

Post-Exertional Malaise: Cause and Effect

One of the labels I absolutely HATE is that of being de-conditioned. Doctors make this assumption about me all the time, despite the fact that I exercise six days a week and have engaged in some form of physical activity most of the time since I first became ill 13 years ago. While I realize I am not as fit as a healthy person, I push myself as far as my body will allow.

Friday, August 06, 2010

Verifying the existence and severitiy of post-exertional exhaustion.... 

This appeared in the latest CFIDS newsletter. It covers how to prove that for a CFIDS patient, the effect of exercise is not just exhausting, it is also damaging:

Post-Exertional Malaise: Perception and Reality

The notion that exercise will cure this ailment is in my opinion the second most aggravating myth about CFIDS (the worst one being that it is a somatoform disorder). But it has been nearly impossible to get a medical professional to believe that one can be in a flare for WEEKS after excessive activity. I am hoping that these studies become more widespread and that doctors will actually taken them seriously.

A shout out to the 303! 

Warning: this contains a bit of profanity. But it is soooo hilarious if you've ever lived in Colorado.


Thursday, August 05, 2010

Anne Rice's spiritual journey.... 

This editorial appeared in my local newspaper today. I'm sure there will be dozens of angry letters to the publication as a result....

Keeping Faith, Losing Religion

While I prefer to think that Anne Rice is still Christian but no longer Catholic, I do understand completely where she is coming from. I, too, was raised with organized religion but became an atheist as an adult. I eventually did return to the denomination of my youth, but it is one far less conservative than Catholicism. I still do believe in all the things she lists, and I am not chastised by my church for believing in them.

But know too many people to count who will tell you that they are spiritual rather than religious. By that, they mean they believe in a creator, but not that every word in the Bible is a direct quote from that creator. They may believe in an afterlife, but not that there is only one denomination to belong to or you will go to hell.

I must confess that when I tell people I am a Christian, I preface that with the word "liberal". I want the world to know that there are Christians in America who do not label non-believers as heathens, who learn about other faiths and recognize their validity, who try to follow the examples of Jesus rather than argue about the exact wording of a book that has been translated and edited into something far removed from its origins thousands of years ago. Unfortunately, the liberal Christians are usually drowned out by the conservative ones, leading many people to think that no religion at all is the best way to go.

Wednesday, August 04, 2010

Aha! Help for the ingredient-challenged! 

Saw an article about this in my local newspaper today. I think it would come in VERY handy to anyone who cooks:

Bookshelf: Out of milk or eggs? Here's help

I swap items all the time, sometimes out of needing to convert a recipe to a gluten-free version, and sometimes because I haven't got the energy to use ingredients that take longer to prepare (like using lemon juice from a bottle instead of squeezing an actual lemon). But nothing irritates me more than being halfway through cooking something and THEN finding out there's not enough of an ingredient to complete the recipe. I should put this book on my Christmas list because it probably could save my sanity, heh heh.

Tuesday, August 03, 2010

Why you don't ask a graphic artist to do free work.... 

Okay, the humor in the following might be a bit tasteless to some, but as a former graphic artist, I found the "posters" to be hysterical! Link courtesy of a Facebook friend:

Clueless Secretary Prompts Hilarious Office E-mail Thread

In other news, I have continued my quest to make copies of all my original material on various sites lest the sites disappear from cyberspace. My latest venture was my original 2003-2004 blog, done on "iBlog", which was an experiment that never quite worked out. As I read the old posts, I was struck by several things:
1. I was still working full time, plus going to support group and union meetings, having various medical tests, running errands all over town and driving to the mountains on my days off. I can no longer do ANY of these things (okay, the tests and errands, but rarely).
2. I was spending multiple hours on the computer at home daily IN ADDITION to full work shifts on a computer. Now I can usually only be on a computer two hours max without either a significant break or waiting until the next day. Some days, I can't use one at all.
3. My writing was soooo much better then. Better vocabulary, creative phrasing, more humorous, longer paragraphs, almost no typos (I only found TWO in 120 posts!). I had the energy to write original content at least four days every week. Now most of my posts involve jokes or links that someone else gave me, and the original content, well, it has nearly disappeared from this blog. That makes me sadder than the first two items.

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