Sunday, April 29, 2012

The complexity of the human machine.... 

Got this from the December edition of the Hummingbird's Guide to ME newsletter. The new section entitled "Biochemical individuality and disease treatment" is about two-thirds of the way down the page and great food for thought, so to speak:

Treatment Concepts: Page 2

One of the most frustrating things I see over and over on fibromyalgia support group message boards is when someone expresses a treatment option in a purely positive or purely negative manner, thinking that this will hold true for everyone. Examples: "Stay away from drug (x), it makes you gain weight and lose your hair"; "Drug (x) is a life saver! You should take it!" or "All prescription drugs are poison! I was cured using natural method (x)". If you read an average day's posts on one of these websites or Facebook pages, you will see almost as many successful or failed treatments as there are people posting.

Now that certain medications are officially approved for their use in fibromyalgia, I get bombarded with "helpful" suggestions from well-meaning friends and medical professionals that I need to go on Lyrica, Savella, and/or Cymbalta. My biochemistry does not tolerate medications that alter serotonin levels like Savella and Cymbalta do, and I tried and failed Lyrica back when it was only approved for seizure prevention. Yet these same medications have done wondrous things for others I know with fibromyalgia.

I know from many years of tweaking my diet and supplementation that my requirements for certain nutrients do indeed differ from the healthy population. If I don't consume at least 60 grams of protein a day, an amount that is considered high, I will feel weak and my brain fog will increase. My carbohydrate intake must be moderate; too high or low messes with my energy levels. I need an extremely high amount of magnesium, at least four times the recommended daily allowance, or my muscles will twitch uncontrollably and cramp up. I require high amounts of powerful pro-biotics. And just last week, I switched to a more readily bio-available form of fish oil and am responding favorably to a dose three times what a healthy person would need.

Saturday, April 28, 2012

Choices, choices.... 

One from the Celiac.com archives - September 5, to be exact. I had no idea this had gotten so big:

Food Allergy, Intolerance Market to Hit 26 Billion by 2017

I do like having many more choices than I had when I first went gluten-free in 2003. It was about three years before I came across a bread that didn't taste like very heavy sawdust, and only within the last year have I started eating bread regularly, one containing millet and chia. I swear by the brown rice pasta I discovered in 2007. There are gluten-free products I have discontinued eating, like pizza crust, brownies, cookies, boxed dinners, and ramen-type soup, not because of the taste, but because I replaced them with more nutritious foods. And I appreciated having the options available to do that.

Thursday, April 26, 2012

This could lead to a LOT of confusion.... 

Got the link to these blog entries from the December 16th edition of the Fibromyalgia and Chronic Pain Awareness newsletter. I must have been living in a cave because I didn't even know of the criteria change:

No More Tender Points? Part 1
No More Tender Points? Part 2

The elimination of the tender point test from the criteria frankly makes me nervous as hell. Without the need for a physical exam, I suspect doctors will start diagnosing patients via telephone or e-mail using just the patient's description of symptoms. That would lead to over-diagnosis, and more of a stigma attached to fibromyalgia because no one is going to take the ailment seriously if practically everyone under the sun with pain is diagnosed with it. It would also lead to under-diagnosis of concurrent ailments. The verbiage in the criteria about the patient must not have any other pain-causing syndrome could cause physicians to stop at the diagnosis of fibromyalgia and not look further for anything else. It is VERY common for people to have multiple ailments with fibromyalgia just along for the ride.

Exercise really CAN make it worse.... 

 Another good link via the folks at the CFIDS Association of America. The results of this study might surprise doctors, but for patients will elicit an "I told you so":

Symptom Fluctuations and Daily Physical Activity in Patients With Chronic Fatigue Syndrome: A Case-Control Study

Pacing is absolutely essential for people with CFIDS/ME in order to avoid exacerbating their illness. Short bursts of light activity (example: loading the dishwasher) need to be alternated with periods of rest. The more severe the illness, the more rest is needed between activities and the less strenuous those activities need to be.

Wednesday, April 25, 2012

Maybe the Grinch wasn't the only one with a heart too small? 

Another item from the December 9 edition of the CFIDS Association of America newsletter. This is the first time I have seen anything about the size of the heart being a factor:

Small Heart With Low Cardiac Output for Orthostatic Intolerance in Patients With Chronic Fatigue Syndrome

I had neurally mediated hypotension ruled out at the Mayo Clinic. I wonder, though, if the test came back okay because I had taken Valium earlier in the day to get through a lengthy MRI. At any rate, if I get up too fast and attempt to stretch my arms over my head, I will nearly faint. I must either stand and wait for the light-headedness to pass or sit back down quickly. Sometimes I fall.

No wonder we can't think straight.... 

Got this very interesting study link from the CFIDS Association of America newsletter for December 9th. One more step toward developing uniform diagnostics for ME:

Regional grey and white matter volumetric changes in myalgic encephalomyelitis (chronic fatigue syndrome): a voxel‐based morphometry 3‐T MRI study

Interesting that they mention the discrepancy between intention and action in patients with ME. Perhaps this might explain why I smack my shoulder on the door frame when I walk into the room, or bash my knuckles on the shelf when reaching for an item in the cabinet? I can clearly see where I'm going and have no confusion about what I am trying to accomplish, yet the end result is askew.

Celiac 101.... 

This article appears courtesy of the August 1st Celiac.com newsletter. This is a nice introduction to celiac disease for those who many have heard about it but don't know any details:

Celiac Disease: A Look into its Pathogenesis

I had celiac symptoms as a child, but they were usually mild. I would tend to have flareups when traveling, as I was usually fed a lot of sandwiches and burgers then and my overall diet would be less healthy on vacation. But when the Sjogren's and the fibromyalgia started in 1997, the celiac symptoms grew worse and worse until it became painfully obvious in 2003 what the problem was.

Tuesday, April 24, 2012

When chest pain isn't a heart attack.... 

Someone on one of my fibromyalgia Facebook pages posted this very useful article. Something to consider for those of you with fibromyalgia who have shortness of breath without an obvious cause:

Reducing Tight, Painful Chest Muscles and Shortness of Breath

Trigger points in the chest are a big problem for me. They don't get much attention because doctors tend to focus on the fibromyalgia tender points, most of which are located on the back of your body. I have tried self massage, and it hurts like Hades.

Unwind, be KIND.... 

Product Review: KIND Bars

Snacks can be tricky when you are on a special diet or are simply trying to eat healthier. Seems like the most nutritious foods aren't very appealing, and the most yummy goodies are nothing more than empty calories that derail you from your goals. And what about convenience? You want something you can tuck into a purse or briefcase or grab at home when you are too ill to cook.

There is something that meets all the above criteria: KIND bars. Their motto is: "Wholesome natural ingredients you can see and pronounce". Every single one of their products is certified kosher and certified gluten free. They are also free of sulphur dioxide, GMOs and trans fats. Several of them are low on the glycemic index, good news for diabetics. But the best part is that they are really delicious!

KIND bars are nut-based and about the size of a small candy bar. Some contain dried fruit, some have dark chocolate, and some contain crispy puffed rice sweetened with honey. You can also choose which nutritional feature you want to emphasize in their Plus bars (which have plus signs on the package): anti-oxidants, protein, calcium, fiber or omega 3. The nut varieties include almonds, macadamia, cashews, pecans, walnuts, peanuts, and brazil nuts. All contain at least some fiber and protein; actual amounts vary depending on ingredients.

The toughest part is deciding which one is best! There are about 20 varieties of KIND bars. My personal favorites are: Almond & Coconut, Cranberry Almond + Antioxidants, Peanut Butter Dark Chocolate +Protein, Dark Chocolate Cherry Cashew + Antioxidants, Almond Walnut Macadamia + Protein, Nut Delight, Almond Cashew with Flax + Omega 3, Peanut Butter & Strawberry, Apple Cinnamon & Pecan, and Mango Macadamia + Calcium.

KIND products I have not yet had the opportunity to try are their Healthy Grains Clusters. These come in pouches and contain multiple servings. These are also all gluten free, instead boasting ingredients like quinoa, amaranth, buckwheat, chia and millet.

I first discovered KIND bars at my local health food store. They can also be purchased online. KIND's website has lots of product and company information:
KIND Healthy Snacks

For a healthy snack that you might actually crave, join the KIND movement.

Monday, April 23, 2012

A chicken or egg question..... 

Another link from the National Fibromyalgia and Chronic Pain Association's newsletter for November 14th. While this association is one of the defining criteria for fibromyalgia, which comes first?

Poor Sleep May Lead to Fibromyalgia in Women

For me, the whole thing started with an adverse reaction to a medication, and the main side effect was insomnia, which I had never experienced before in my life. After a few weeks of no sleep, the pain started up, and the brain fog. So while I didn't have a pre-existing sleep disorder, the medication reaction GAVE me one.

When a picture ISN'T worth 1000 words.... 

This article comes from the November 14th newsletter for the National Fibromyalgia and Chronic Pain Association. Although this is geared toward doctors, the data is interesting:

ACR: Body Map No Help in Telling Where It Hurts

I have not found pictures useful to describe pain that travels, varies in intensity or is simply body-wide. Drawing a little "X" on a mannequin does not state whether that pain is burning, sharp or throbbing. And sometimes I have multiple types of pain in the same location.

Another reason to take celiac disease seriously.... 

Got this from the July 4th edition of the Celiac.com newsletter. I knew about the correlation, but didn't know the rate was so high:

Celiac Disease Quadruples Risk of Osteoporosis

I think it would have been useful if the article had said how to reduce the risk. At the very least, patients should get bone density tests every two years, more often if the doctor recommends it. And if there is thinning of the bones, treat it early.

Can you bend yourself like a pretzel? 

Interesting article on a subject I hadn't seen before addressed. Comes from the November 4th newsletter from the CFIDS Association of America:

Joint Hypermobility and CFS

I  rate  a score of 3 on the Beighton scale. Only one of my doctors has ever noted that I seemed to have excessive range of motion in certain joints, which caused him to declare that I couldn't possibly have arthritis (he was wrong). I can touch both palms to the floor from a standing position without bending my knees, and I can bend both thumbs forward to touch their respective forearms. But I was even more flexible when younger, being able to do the splits and back bends easily.

A better definition.... 

An important milestone has been reached in outlining the parameters of ME, which should replace the outdated term CFIDS (although I will continue to use both for the time being when needed for clarity). Link courtesy of the November 4th edition of the CFIDS Association of America newsletter (see what I mean?):

International Consensus Criteria Published for Myalgic Encephalomyelitis

I certainly meet the new criteria, no problem. But I do take issue with their definition of "moderate" ME, which is completely housebound. That sounds SEVERE to me. I would consider myself to have a moderate case even though I can drive myself for short periods, such as to water therapy and immediately home again. I can also leave the house if Dan drives me, like to church and immediately home again, or to short visits across town to visit in-laws. So I would be partially housebound, especially since I have significant relapses if I am out of the house for more than about three hours continuously. I cannot hold any sort of job outside the home, grocery shop, spend significant time on the computer, walk more than one city block without rest, clean house regularly except for the kitchen, do yard work, laundry except for a single load every week or two, drive myself for more than 45 minutes continuously, stand for more than 30 minutes without relapse, or even have a long phone conversation. Doesn't THAT sound more like moderate?

Tummy tamers.... 

Found this item in the November 4th CFIDS newsletter. The results are not terribly surprising, but it is nice to get scientific confirmation:

Probiotics Effective in Combating Antibiotic-Associated Diarrhea, Studies Find; 'Good Bugs' Look Promising as Anti-Inflammatory Agents

I started eating yogurt for its probiotic benefits during the 1990's. I now eat organic plain nonfat Greek yogurt containing a ton of natural cultures, plus a potent probiotic daily supplement. I figure it's best to keep my tummy as happy as possible.

Sunday, April 22, 2012

A chemotherapy drug as treatment for CFIDS/ME? 

This important article appeared in the October 20 edition of the CFIDS Association of America newsletter. Please read all the way through to find additional links and useful information in the comments section:

Rituximab Trial Shows Promise

This drug has also been used to treat severe rheumatoid arthrits and lupus. I know someone for whom it was a lifesaver. In the context of CFIDS/ME, I think this points to an autoimmune cause. I know my Sjogren's symptoms improve greatly and even disappear when I am on prednisone, which wipes out the immune system, albeit not as completely as chemotherapy. I am VERY interested in the results of further research on Rituxan.

Saturday, April 21, 2012

The earlier, the better.... 

Got this from the June 20th edition of the Celiac.com newsletter. It explains why, if you've tested positive for celiac but feel okay, why you still might want to try a gluten-free diet:

 Advantages to Early Intervention for Asymptomatic Celiac Disease

On a completely unrelated note, as of this post, my blog has officially been switched to a new format, about which I am not thrilled. I'm hoping this will not interfere with business as usual, but given my trouble learning new technology, I make no promises. So far, though, so good. I'm gonna hit the "Publish" button now and see if I did everything right.

Friday, April 20, 2012

Another case of money talking.... 

Found this in the June 6th Celiac.com newsletter. This doesn't surprise me at all:

Do Income Levels Influence Celiac Diagnosis?

I do think those who are financially well off would be more likely to push for diagnosis of their symptoms because they don't have to worry about whether they can afford the tests and doctor visits. And often it is many years, many years and many doctors before a proper diagnosis is reached.

Ensuring the happiest place on earth... 

This article was in the June 6th edition of the Celiac.com newsletter. I already knew about it and have posted on the subject, but it was quite some time ago:

Kudos: Disney Takes Lead on Gluten, Food Allergens

I have been accommodated in their sit-down restaurants, lunch stands, a food court in their hotel, and even on a cruise. It is intimidating to travel when you don't know where you'll be able to eat on a given day. But Disney does a good job of giving people peace of mind.

Thursday, April 19, 2012

PLEASE read this article and consider contacting your federal legistlator, even if you are healthy! 

This important item appeared in today's National Fibromyalgia and Chronic Pain Awareness newsletter. It includes a template letter to send to your representatives if you are so moved:

Specialty Tier Call to Action

This has already happened to me. One of my medications went from a $30 copay to $450. Four months of negotiation with the insurance company got me nowhere. I shudder to think of those whose very lives rely on a medication that may become priced in the thousands of dollars or more, forcing them to choose between buying their med or paying their mortgage/rent. The really ironic thing is that many of them are too "rich" to qualify for extra help, which leaves them stuck and in ever-increasing debt. I am a "rich" person who had over a third of my total household income, including my husband's full-time job, go to medical expenses.

Wednesday, April 18, 2012

His career had a beat, and you could dance to it.... 

Broadcast legend Dick Clark is gone. Truly the passing of an era:

'America's oldest teen' Dick Clark dies

He was one of the people who inspired me to go into radio. I loved his friendly and natural style of broadcasting at a time when gimmicky personas were all the rage. He was attractive but never upstaged the guest or performer. He seemed to truly enjoy his job. I watched a fair amount of "American Bandstand" when I was a little kid, and I never pretended to be the music act; I pretended to be HIM. He set the standard. I will miss him.

Figuring out who is celiac and who is not.... 

One more from the May 30th Celiac.com newsletter. Despite the advances in technology, diagnosis hasn't gotten any easier:

Diagnosing Celiac Disease Is Far from Straightforward

I was one of those whose biopsy was negative, yet I was highly symptomatic. I opted not to wait around to see if I developed the antibodies and started the gluten free diet voluntarily. I am not sorry I did.

A shot that increases gluten tolerance? 

Another item from the May 30 edition of the Celiac.com newsletter. Hadn't heard about this one before:

ImmusanTs Celiac Vaccine Passed Phase I Clinical Trials

Like the other products being tested, this won't be a substitute for a gluten-free diet, but could be a way to ward off the effects of accidental gluten ingestion. I don't know that such a thing would be necessary for me, but I see how it might be a godsend for the severely affected.

A sub-group of celiac disease.... 

This article appeared in the May 30 edition of the Celiac.com newsletter. I had no idea a fatal form existed:

Refractory Celiac Disease Might Be More Common in Europe than in the USA

I am curious whether the incidence of this more serious variety will increase in the future or whether awareness of it will cause more of the at-risk population to voluntarily go gluten-free in an attempt to head it off. Either way, I believe far more study is warranted.

It takes guts.... 

Another item from the September edition of the Hummingbird's Guide to M.E. newsletter. Contains ideas worthy of consideration:

Improving Gut Health in M.E.

The main drawback to doing the natural foods is the extra energy required in preparing them for consumption, particularly if you need to cook and/or puree your fruits and veggies and soak nuts and seeds. I spend an inordinate amount of time cursing about how tired I am while cooking. But I have to admit my body is probably better off for trying to keep my diet more nutritious.

What's for lunch? 

Got this from the September edition of the Hummingbird's Foundation for M.E. newsletter. These are worth considering for not just those with M.E. but pretty much anyone:

Foods to eat, foods to avoid and foods to think about

I guess I should count myself fortunate that I don't have a problems with nightshade foods or dairy. At the moment, my food processor is awaiting a replacement part, but when I've got it up and running again, I should try making my own vegetable juices. And I am actually considering making a very rare appearance at the grocery store to look into buying sardines, sauerkraut and liverwurst.

Surgery to treat fibromyalgia? 

I honestly don't know what to think of this. It appeared in the October 1st edition of the National Fibromyalgia and Chronic Pain Association's newsletter:

Vagus Nerve Stimulation: Promising Fibromyalgia Treatment Possibility

Even though I definitely have an extremely treatment-resistant case of fibromyalgia, I don't think I would be a good candidate for surgery due to other health complications. I don't tolerate anesthesia well, I'm allergic to surgical tape, and I can't take medication for surgery-related pain. But I am curious to see if more studies will be conducted and whether they conclude this is a truly worthwhile treatment.

Not holding my breath.... 

Got this from the October 1st edition of the National Fibromyalgia and Chronic Pain Association newsletter. Wonder if this will be the next Savella?

Possible Fibromyalgia Drug Moves Forward

I didn't see in the article whether or not this drug affects serotonin levels. That sort of thing is what started my fibromyalgia in the first place. But if this only works on dopamine level, that might be a bit more promising for me.

Tuesday, April 17, 2012

Are women the sicker sex? 

Fascinating article courtesy of the Celiac.com newsletter for May 23, 2011. I found the info on Sjogren's particularly enlightening:

Female Hormones and Autoimmune Disease

Unfortunately, fixing a hormonal imbalance is never as simple as dosing a woman with DHEA. Usually, by the time a woman is finally diagnosed with a medical condition, she has malfunction in multiple areas of the body that require complex treatment regimens. It took six years to figure out I had Sjogren's, and during those six years, my thyroid bottomed out, my stomach muscles stopped working, my endometriosis grew much worse, I became pre-diabetic, the asthma began, my celiac symptoms peaked, and I developed fibromyalgia. One hormonal treatment wouldn't even begin to cover it all.

Goes with your gut.... 

Another link from the May 23, 2011 Celiac.com newsletter. Hadn't heard of this product before:

CeliAct Gluten-Free Nutritional Supplement

Would be nice to get probiotics and digestive enzymes in the same pill as a multi-vitamin. At present, I am trying a new Omega oil supplement in liquid form. Tastes great, but I'm only on day one, so I need to give it a few weeks before I know how effective it is.

It's enough to take one's breath away.... 

Got this from the May 23, 2011 edition of the Celiac.com newsletter. It seems to be one of those "chicken or the egg" subjects:

Celiac Disease Associated with Asthma

My asthma symptoms began in 2003, right when my celiac disease symptoms peaked and about eight months before I went gluten free. Didn't know it was asthma, though, until 2008 when I went to the Mayo Clinic. Luckily, mine is mild, and I manage it pretty well with daily medication.

Making entertainment more entertaining.... 

This site was mentioned in last week's Entertainment Weekly, so I looked it up. It reminds me of another fake news site I really love, the "Onion", so I think I will add it to my Links list:

Hollywood and Swine

In other "news", I am still sorting through, reading and posting articles from the various e-mail newsletters that are piled up in my mailbox. I am up to May of last year. Am learning some interesting stuff, but at the rate I'm going, it will be at least another two months before I am caught up.

Monday, April 16, 2012

Final video discussing sleep apnea, narcolepsy, restless leg syndrome and other sleep disorders associated with fibromyalgia.... 

Conclusion of non-refreshing sleep discussion; insomnia.... 

Excellent explanation of unrefreshing sleep in fibromyalgia.... 

Sunday, April 15, 2012

Reading practically hands free..... 

Got this link from the June 2011 edition of The Hummingbird's Guide to M.E. newsletter. Looks like it would be quite useful for those who have problems holding up a book long enough to read it (I sometimes do):

Book Seat

Of course, if I want to be able to read in bed, I will need to track down one of those upper body rests so I can sit up without straining my back. And believe it or not, I can get a repetitive strain injury if I try to watch TV while lying down. Guess I'll only be comfortable when I'm dead, heh heh.

Why celiac symptoms don't always match disease severity.... 

From the May 2, 2011 edition of the Celiac.com newsletter. I didn't know there was more than one kind of celiac disease:

The Role of Microscopic Enteritis in Celiac Disease Malabsorption

I think these findings would bolster the reasoning of trying a gluten free diet even if biopsy and blood work are negative. I was highly symptomatic and didn't want to wait around to see if I developed the anti-bodies at some point in the future. I must have had problems with nutrient absorption even with normal test results because once I stopped eating wheat, I dropped 40 pounds in a year, weight that absolutely wouldn't budge before.

Inspiration for the Day, April 15, 2012: 

This appeared in my church bulletin. I do not know the author:

Jesus Was a Low-Wage Worker

Jesus was a low-wage worker, just like too many workers in the U.S. today. Nurses aides, hotel housekeepers, farm workers, day laborers, early childcare specialists, fast food workers, retail sales clerks, and custodians are examples of workers who provide needed services but usually receive wages so low that they cannot keep a family out of poverty. Low-wage workers today, just like Jesus, deserve a living wage.

Too many low-wage jobs - Over one-quarter of all jobs in the United States (26%) pay poverty-level wages, so low that a full-time worker cannot keep a family of four out of poverty. These jobs are more likely to be held by people of color. Just like Jesus.

No benefits and difficult work conditions - Low-wage jobs are less likely to provide health insurance, a pension, or even paid sick leave. They are more likely to require evening, night, weekend, or rotating shifts. They are more likely to be part time.

Less upward mobility - These jobs are seldom ladders to better opportunities.

Education is not the answer - While more education can improve the job prospects for an individual, allowing him or her to move to a better paying opportunity, more education for workers will not improve low-wage JOBS.

Unsafe working conditions - Low-wage jobs are more likely to be dangerous or unsafe.

What to Do about Poverty-Wage Jobs

Raise the minimum wage - We need to further increase the minimum wage. In 2007, Congress voted to raise it to $7.25 over a two year period, helping about 15.5 million workers. But this new wage is not high enough.

Strengthen workers' rights to form a union - Unions are one of the best ways for workers to improve their wages and working conditions. God gave us the Sabbath, but the efforts of organized workers brought us the weekend, the 8-hour day, paid vacations and holidays, health insurance, and pensions. This right has been eroded in the U.S. In 31% of all efforts to form unions, workers are illegally fired solely for their union organizing efforts.

Change unfair international trade agreements - Laws that govern international trade and investment typically put workers - in the U.S. and around the world - at a disadvantage. Free trade and investment agreements usually mean freedom for corporations to move where wages are lowest, workers least able to speak out, and safeguards for both labor and the environment are the weakest. This hurts workers in the U.S. and those in other countries.

Low-wage workers are high-value people of God. All jobs must provide fair and adequate wages, benefits, and working conditions. Workers must be able to support themselves and their families, and live with the dignity God intends for all. God's reign does not stop at the door to the workplace but extends to all aspects of life including our work lives.

Saturday, April 14, 2012

I can sooo relate to this! 

Another excellent article by Toni Bernhard. I'm sure everyone with chronic ailments that affect their sleep can see themselves in this:

Sleep Hygiene for the Rest of Us

When I have gone to bed and cannot fall asleep, it is more beneficial for me to rest in bed rather than get up and try to make myself tired. If I'm wandering around at 4am because I didn't reach Snoozeland at the appointed time, the next day will be thrown completely off, or maybe even the next two or three days. I use the time that I'm in bed not sleeping to pray and focus on a better tomorrow. That's almost as good as sleep itself.

Inspiration for the Day, April 14, 2012: 

"Hard Times Come Again No More" (song)

Let us pause in life's pleasures and count its many tears,
While we all sup sorrow with the poor.
There's a song that will linger forever in our ears;
Oh! Hard times come again no more!

It's the song, the sigh of the weary
Hard times, hard times come again no more. No more!
Oh! Hard times come again no more.

While we seek mirth and beauty and music light and gay,
There are frail forms fainting at the door.
Though their voices are silent their pleading looks will say:
Oh! Hard times come again no more.

Tis a sign that is wafted across the troubled wave,
Tis a wail that is heard upon the shore,
Tis a dirge that is murmured around the lowly grave,
Hard times, hard times come again no more. No more!
Oh! Hard times come again no more.

- Stephen Foster (1854)

Friday, April 13, 2012

Fad or permanent change? 

One more from the April 18, 2011 edition of the Celiac.com newsletter. Apparently, celiacs aren't the only ones going gluten-free:

Gluten-free Market Growing Beyond Celiac Disease

I've heard many dismiss this as a fashionable trend. But I think some may end up staying gluten free even if they don't need to, if the products are of higher nutritional value than what they had been eating. I am pleased with the expansion because it means more choices for me.

I'd say he's guilty of reckless endangerment.... 

This came out a year ago, but it's worth noting. From the April 18, 2011 edition of the Celiac.com newsletter:

Paul Seelig Found Guilty of Selling Fake Gluten Free Bread Gets 11 Years

Yes, we are primarily responsible for our own nutrition, but this was intentional misrepresentation. It's enough to make someone afraid to eat ANYTHING that contains a grain.

Another in the long list of diseases associated with celiac.... 

This is from the April 18, 2011 edition of the Celiac.com newsletter. Although this probably comes as no surprise to anyone, it's good that it's being studied:

High Rates of Celiac Disease in Multiple Sclerosis Patients

If you have MS, it's probably a good idea to get screened for celiac disease if you haven't already. Same goes for diabetes and Sjogren's.

Another reason to try fish oil.... 

Found this in the April 18, 2011 edition of the Celiac.com newsletter. It explains the potential benefits of DHA for people with celiac disease:

DHA Therapy to Modulate Mucosal Inflammation in Celiac Patients

I have been taking high dose fish oil since 2003. Originally, it was to help with joint pain from the arthritis caused by Sjogren's, but it seems to be good for other problems as well.

Volcano on Antarctica! 

Stop, thief! 

CFIDS/ME and the brain drain.... 

Another from June 2011's CFIDS newsletter. This provides proof that we aren't right in the head, but not in the way most people think:

A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis

I hope that we are nearing the era where we can use MRI/fMRI as a diagnostic tool instead of blaming mental status changes in CFIDS/ME patients on somatic causes. At least we are getting concrete evidence that this ailment is far too complex for someone to fake.

A step in the quest for CFIDS/ME biomarkers.... 

Found this in a June 2011 CFIDS newsletter. It is highly technical, but the results are fascinating:

Immunological abnormalities as potential biomarkers in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The more readily identifiable specific biomarkers become, the more useful they will be in diagnosing diseases. The sooner we figure out what a patient has, the sooner treatment can begin, and the greater the likelihood of limiting its severity and/or progression.

Inspiration for the Day, April 13, 2012: 

"Every human life is a reflection of divinity, and every act of injustice mars and defaces the image of God in humanity."

- Martin Luther King, Jr.

Why celiacs should think carefully before dining out.... 

This too comes from the April 11, 2011 Celiac.com newsletter. While the man in the article no longer works in this restaurant, the idea that anyone would do such a thing is upsetting:

Colorado Chef Damian Cardone Brags about Endangering the Health of Unsuspecting Gluten-free Diners

I shudder to think what might happen if someone with an actual allergy to wheat was intentionally served food containing it. Luckily, my symptoms are not life-threatening, but I do get pretty sick for about three days after ingesting gluten. The last time that happened was in 2004 at an Applebee's, where they were quite arrogant about not being liable for what was in their food. Needless, I have never eaten anything in their restaurant since - if I go to a party or other gathering there, I just sip on iced tea. I am fairly certain if I had a true food allergy, I would NEVER eat in a restaurant, just in case there were anyone like Mr. Cardone working there.

Diabetes and celiac management.... 

From the April 11, 2011 edition of the Celiac.com newsletter. This addresses those of us who have both diabetes and celiac disease:

Controlling Blood Sugar and Nerve Damage - Understanding the Connection

I'm one of the "lucky" folks with both ailments. I have been able to manage them well. Both have been a walk in the park compared to dealing with gastroparesis.

Another association of a chronic ailment with celiac.... 

This comes from the April 11, 2011 edition of the Celiac.com newsletter. I guess this shouldn't be surprising:

Strong Link Between Asthma and Celiac Disease

I have had celiac disease all my life, but only developed asthma nine years ago. Another example of how people rarely have just one chronic ailment. They tend to cluster in certain individuals. I call this the buffet option, heh heh.

Celiac disease more widespread than originally thought... 

This appeared about a year ago in the Celiac.com newsletter. Apparently, we need to think bigger in terms of who does and does not get celiac disease:

Celiac Disease Rates in Iran Similar to Europe

I remember when I was first trying to find out if I had it, I was asked my ethnic heritage. Looks like that question may actually be irrelevant.

Thursday, April 12, 2012

What are you hanging onto? 

Got a pleasant surprise on Facebook today - a friend request from someone with whom I attended college and shared a house. This was on her page:

15 Things You Should Give Up to Be Happy

I do remember when I was younger wasting a ridiculous amount of time and energy worrying about what others thought. I don't know that I necessarily agree with all the items on the list, but I can see where any of them done in excess can restrict one's enjoyment of life.

Inspiration for the Day, April 12, 2012: 

Opening prayer at my church last November:

Creator God breathed into emptiness and created all that is.
With love and care, God shaped the world in all its diversity - with mountains and valleys, rivers and deserts, and people of all colors and sizes.
And threading through it all are beautiful dreams of justice, compassion, liberation, and peace.
O God, creator of our past, our present, and our future, we thank you for the many blessings you bestow on us each moment. Be with us now. Draw near to us as we draw near to you. Lead us in paths of righteousness. Fill our hearts with compassion and a thirst for justice. Teach us to be co-creators, with You, of a world where we all belong and share in the abundance you have given us.

Wednesday, April 11, 2012

Inspiration for the Day, April 11, 2012: 

"Give and it will be given you.
A good measure, pressed down, shaken together, running over, will be put into your lap, for the measure you give will be the measure you get back."

- Luke 6:38

Tuesday, April 10, 2012

Inspiration for the Day, April 10, 2012: 

I look to the hills - where will I find help?

It will come from God: the creator of all that is, the one who protects, who is always alert, who does not let us stumble, who doesn't doze, who doesn't even get drowsy!

Where will I find help?

From God who protects us, giving us shade by day, giving us light at night, keeping us safe in all times and places.

From where does our help come?

Our help comes from God!

- adapted from Psalm 121

Blog alert! 

Stumbled across a new blog while perusing a Facebook fibromyalgia page. I'll be adding it to my Links list, but here's a peek:

Four Seasons in One Day

I used to experience dramatic temperature shifts when I lived in Denver - sometimes as much as 40 degrees in a 24 hour period. But in my little house on the prairie, instead of the wide variation, I get EXTREME cold, which is actually worse.

Monday, April 09, 2012

Inspiration for the Day, April 9, 2012: 

Make me an instrument of your peace. Where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; where there is sadness, joy. O Divine Master, grant that I may not so much seek to be consoled as to console; to be understood as to understand; to be loved as to love. For it is in giving that we receive; it is in pardoning that we are pardoned; and it is in dying that we are born to eternal life.

- adaptation of the words of St. Francis of Assisi, 1182-1286

Rave of the Day for April 9, 2012: 

Got this from The Sioux Falls Shopping News. I am now reassured that I am not the only one who feels this way:

Ten Rules Kids Won't Learn in School

1. Life is not fair. The average teenager uses the phrase "It's not fair" 86 times a day.

2. The real world won't care as much about your self-esteem as your school does. This may come as a shock!

3. Sorry, but you won't make $40,000 a year right out of high school. And you won't be vice president or have a top of the line iPhone and iPad, either.

4. If you think your teacher is tough, wait until you get a boss!

5. Flipping burgers is not beneath your dignity. Your grandparents had a different word for burger flipping. They called it opportunity.

6. It's not your parents' fault if you mess up. You're responsible! This is the flip side of "it's my life" and "you're not my boss".

7. Your parents aren't boring. They have a lot of responsibility working and caring for you - and not much time for fun.

8. Life is not divided into semesters. And you don't get summers off. Not even spring break. You are expected to show up at a job every day for eight hours - and you don't get a new life every 10 weeks.

9. Smoking does not make you look cool. Think of an 11-year-old with a cigarette in their mouth. That's what you look like to anyone over 20.

10. Your school may be "outcome-based", but life is not. In school, you're given as many times as you want to get the answer right. This, of course, bears not the slightest resemblance to anything in real life - as you will find out.

Good luck! You are going to need it! But the harder you work, the luckier you will get.

The future of pain management.... 

Got this in July from the National Fibromyalgia and Chronic Pain Association. It is a summary of the Institute of Medicine's report on pain:

Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research

One thing recent research has shown is that acute pain needs to be treated more aggressively to prevent it from becoming chronic pain. Once pain becomes a constant thing, the brain chemistry is permanently changed, making treatment success less likely. I am at a point where I will likely NEVER experience another day in my life without pain.

Sunday, April 08, 2012

Inspiration for the Day, April 8, 2012: 

Easter blessing:

May we rise to love,
rise to heal,
rise to forgive,
rise to courage,
rise to kindness,
rise to wisdom,
rise, even to die.
But most especially, let us rise to life.
Let us love life and live it to the fullest.

Here comes Peter Cottontail... 


Saturday, April 07, 2012

Live it up with liver.... 

Another good article from the March 2011 edition of the Hummingbird's Guide to M.E. newsletter. It too is well-researched with links for those who want to learn more:

Liver, liver extracts, cod liver oil and M.E.

Believe it or not, I actually LIKE eating liver but haven't done so in years. Perhaps I will see if I can find additive-free liverwurst now that I eat gluten-free bread regularly. That would make a pretty good sandwich.

Not all fats are bad for us.... 

Found this in the May 2011 edition of the Hummingbird's Guide to M.E. newsletter. I like the information presented here, and some of the additional links on the page look promising:

Coconut oil, lauric acid, monolaurin and M.E.

This is the second article I've read this week about the health benefits of coconut oil. I am thinking of switching to coconut oil for my cooking, particularly since it works in stir fry dishes. I also LOVE the organic coconut bars I buy at the health food store - I should write an article about them sometime.

So, what ARE we supposed to tell them? 

Got this from an April 2011 edition of the CFIDS newsletter. I have had similar experiences in doctor's offices:

The Stigma of Chronic Fatigue Syndrome

Dan was kind enough to track down a copy of Toni Bernhard's book, "How to Be Sick", using some of the money I got for my birthday. Looking forward to reading it.

We inch closer to celiac disease prevention.... 

Found this in the March 21, 2011 Celiac.com newsletter. Wouldn't it be cool if we could keep those who genetically susceptible from ever getting celiac disease at all?

Blocking Interleukin-15 May Treat Celiac Disease Symptoms

Even if a reliable celiac prevention medication comes along, I will probably stick with my diet because I know that has no side effects. But I could also see where it could be a good backup in situations like travel where you might accidentally ingest gluten. Also, it might be useful for kids where it is difficult to supervise absolutely everything they eat.

Rave of the Day for April 7, 2012: 

There are just a few items left in my archives. This came from Ducky in 2002:


Don't put all of your eggs in one basket.

Walk softly and carry a big carrot.

Everyone needs a friend who is all ears.

There's no such thing as too much candy.

All work and no play can make you a basket case.

A cute little tail attracts a lot of attention.

Everyone is entitled to a bad hare day.

Let happy thoughts multiply like rabbits.

Some body parts should be floppy.

Keep your paws off other people's jellybeans.

Good things come in small sugar-coated packages.

The grass is always greener in someone else's basket.

An Easter bonnet can tame even the wildest hare.

To show your true colors you have to come out of your shell.

The best things in life are still sweet and gooey.


A new pair of genes? 

Another interesting article from the March 14, 2011 edition of the Celiac.com newsletter. It's a bit technical, but could prove useful and worth wading through:

New Genetic Variants Might Be Associate with Celiac Disease

I wonder how long it will be before we can be completely genetically mapped and find out to which diseases we are most susceptible? It would be awesome if one could preempt celiac disease altogether by going gluten-free BEFORE damage is done. I fortunately made several healthy lifestyle choices in my 20's that likely delayed the onset of my diabetes and the worst of my celiac symptoms.

Some may feel celiac in their bones.... 

Got this from a March 2011 (yep, trying to catch up on that e-mail box) edition of the Celiac.com newsletter. This is something I knew about, but might not be widely reported:

Weaker Bones, More Fractures for Celiac Disease Patients

If you have celiac, diabetes, or other risk factors for osteoporosis, ask your doctor if you need a bone density test. BTW, high-dose prednisone can also thin bones. I'm getting tested every two years, and so far, I'm pleased to report that my bones are in great shape.

Friday, April 06, 2012

What, the bunny? 

Ran across this on Funny or Die. Make sure you scroll through the whole slide show. Never thought a rabbit could be so disturbing, heh heh:

21 Nightmare-inducing Easter Bunnies

Speaking of bunnies, the cute kind have been hanging around my yard nearly every day the past month or so. Sometimes three of them will chase each other around, which is hilarious. They have made a permanent home under the porch, which I don't mind because it's free entertainment.

Take me to your (geek) leader... 

The photo really cracked me up. And the blog it's on makes for good reading:

First President of the Federation

Have been doing some spring cleaning, sorting through my Links list and determining which ones are current. I'm also putting the links into a special folder just in case they don't appear on my blog whenever the format changes.

Thursday, April 05, 2012

Life is a classroom.... 

Another gem of an article by Toni Bernhard. Psychology Today has a good thing going here:

10 Things I Didn't Know Before I Got Sick

One thing I didn't know is that a predictable routine is not always a bad thing. If I don't do the same thing each day at the same time now, I will either forget something important or end up going to bed late trying to catch up, which will in turn throw off the next day. And I've learned that comfort and functionality are more important than fashion.

Happiness is wanting what you have.... 

Got this from the Redefining Normal Fibromyalgia/CFS/ME/Chronic Pain's Facebook page. The author has written a book I still would like to buy:

Taming the Want Monster

Two things I want are to go to StarFest in a few weeks and my 30 year high school reunion this summer. But in order to get to Denver from South Dakota, it's a two-day ordeal by car since I have to stay overnight halfway through. Both events take place over a weekend, and Dan and I wouldn't get back by Monday morning, and he is not supposed to take Mondays off work. Plus, it would cost money we really can't spare. So I need to look at it from a perspective that at least I will not be making myself more ill with all that travel.

The (new) naked truth.... 

Saw this ruling being discussed on CNN and was dumbfounded. Apparently there is ZERO right to privacy remaining in the United States:

Court ruling on strip searches is unjust

So, let's see....you can be detained indefinitely if you are deemed an "enemy combatant", have your phone tapped or tracked even if you have broken no laws, have your home trashed in a no-knock raid where sometimes they get the address wrong, be suspected of being a drug dealer if you pay for your airplane ticket with cash, be shot to death for walking around in a hoodie, and now you can get strip searched for jaywalking. Not exactly the land of the free I grew up in.

Wednesday, April 04, 2012

An explanation for "everything hurts syndrome".... 

Got this from the Redefining Normal Fibromyalgia/CFS/ME/Chronic Pain page on Facebook. It's a pretty good summary, and I learned a few things:

Why Fibromyalgia Pain Makes You Hurt from Head to Toe

I went to the pain doctor yesterday to work on the horrible spasms I've been getting on the left side of my next, the SCM muscle, the past five weeks or so. First I had acupuncture, then an unusual physical therapy involving acupressure areas in my hands, face, scalp and near my collar bone. With fibromyalgia, often when you treat one area, the adjacent area or the same spot on the opposite side of the body will act up. But the therapist seemed to be psychic because as soon as the pain moved somewhere else, he was addressing it like he knew that was going to happen. He didn't use much pressure; some of the stuff he was doing kinda tickled. But when I was done, he told me to sit up slowly, which I thought was weird until I noticed that my head felt lighter. Since then, I've had a bit of pain on the left side of the neck, but it is brief; nothing like before when the whole side of my neck would cramp up so that I couldn't move it.

A soon to be viral video featuring the Spoon Lady.... 

This is incredible! 

Got this from my friend Pete's Facebook page. I have never seen anything like it:

new device makes wheelchairs obsolete

Think of the implications. A paraplegic could navigate any public space and might not require special housing. Plus, a great deal of independence would be gained.

Inspiration for the Day, April 4, 2012: 

"We all should know that diversity makes for a rich tapestry, and we must understand that all the threads of the tapestry are equal in value no matter what their color."

~ Maya Angelou

Monday, April 02, 2012

Not exactly a newsflash.... 

...but I appreciate the sentiment. Got this from the Fighting Fibromyalgia Together page on Facebook:

People with fibromyalgia aren't crazy

Of course, long-term disability insurance companies will continue to play the "mental illness" card on fibromyalgia patients because it is profitable for them to do so (they only pay benefits for physical ailments). I imagine it will take a very long time for that to change.

A very bitter pill indeed.... 

I am extremely ticked off at the insurance company because I wasted four months trying to get a generic medication covered at the proper level. Their co-pays are based on Tier 1, which are "approved" generics; Tier 2, which are "non-approved" generics; and Tier 3, name brands. They are charging me the brand name rate for Pilocarpine, which is the generic form of Salagen and a very old medication; all my previous insurance companies covered it at the cheapest rate.

Pilocarpine is what people with Sjogren's syndrome take to help their bodies produce moisture; the only other medications of this type that exist are Salagen and one that is even more expensive called Evoxac. A brand-name co-pay doesn't sound like any big deal until you factor in that I am on a Medicare Advantage plan subject to the doughnut hole. Sometime this summer, my co-pays will disappear, and I will have to pay full price for this medication, which will cost me approximately one-third of my SSDI benefit. And that's not counting my dozen other medications I have to take regularly!

I called the insurance company in January, and they said my rheumatologist had to contact them, which she did. Their response was a denial, but it was only over the phone with no explanation. They are supposed to given me a written response, and getting none, I called them in February, and they said I had to write a letter, which I did. Again, no response; I called in March, and they said they didn't get the letter but then changed their story and said the rheuamatologist had to contact them again, which she did.

Today, I got two letters from the same address and the same date with a denial for two different reasons and two different methods to resolve it. I called again and spent an HOUR getting transferred back and forth. Finally, someone supposedly in authority gave an "official" response; that Pilocarpine is not eligible for a generic co-pay because nothing cheaper is available. WHAT? Isn't that why we are supposed to get the lower co-pay in the first place? I told the woman this made no sense, and then she blamed the drug company, babbling incoherently about pharmaceutical firms hiring Antonio Bandaras to advertise medication. I told her that Antonio Bandaras has never done an ad for something that gives people the ability to spit. Then she said that chemotherapy-type medication is usually given the brand-name rate even if it is generic. I lost it and began yelling that I'm not on chemo. She yelled back that it doesn't matter because I can't do anything about it. I hung up on her.

They could have saved me four months of grief by putting a clause in their evidence of coverage booklet that they can ignore their own tier system any time they wish. I am out an extra $650 this year. I guess in October, when open enrollment for Medicare starts, I will be shopping for a new insurance company.

The only upside to this whole thing is that I will hit catastrophic coverage this year. Last year, I came within $200 of qualifying for reduced co-pays after shelling out about $4500 out of pocket for medication. This year, I will have about, oh, three weeks of reduced co-pays. Hooray for me.

Inspiration for the Day April 2, 2012: 

"A person however learned and qualified in his life's work, in whom gratitude is absent, is devoid of that beauty of character which makes personality fragrant."

- H.I. Kahn

Sunday, April 01, 2012

I wonder how often this gets misdiagnosed? 

Got this from the Facebook page of "I'm not CRAZY...I have Fibromyalgia!" Lots of people had been complaining of weird pain and sensations on their scalp.

Occipital Neuralgia: Symptoms, Causes, Treatments and More

I get spasms in my scalp, like a charlie horse except in my head. I guess I could refer to it as a brain cramp even though it's not as amusing as it sounds.

The challenge of being "yourself".... 

Got this link via The Hummingbird's Guide to M.E. on Facebook. It is from a new blog:

Self worth with M.E.

I have written articles on the subject myself. It can take time to learn that it is not necessary to be productive to be worthwhile, and some never learn it. And few who are healthy understand that with certain ailments, resting is actually an essential part of a treatment regimen.

Inspiration for the Day, April 1, 2012: 

"Nothing can dim the light that shines from within."

- Maya Angelou

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