Saturday, June 30, 2012

Way over the line for a toke.... 

Found this link on a Facebook friend's page. Maybe I should be surprised at some of these stories, but I'm not:

Life without Parole for Pot? 10 Worst Cases of Cruel and Unusual Punishment

My current state of residence has, predictably, voted against allowing medical marijuana. So unless I move somewhere where it's legal, I will never have the chance to find out if it would reduce my daily pain and nausea. Because the last thing I am physically capable of is spending time in a jail cell.

More thoughts on the Supreme Court ruling.... 

Was reading Ebert movie reviews, and came across this from his blog. I guess I shouldn't be surprised he has strong feelings about health care coverage, given all that's gone on in his life during the past six years:

Doing the right thing

As I have said before, I would have preferred truly universal health care, but Obamacare is a step in the right direction. I remember being in college and having no health insurance. I injured my back during my sophomore year, and other than an x-ray to make sure I didn't have a fracture (I did have a chipped bone, though) and a two weeks' worth of pain medication, I couldn't afford to do anything about it. Because I under-treated the problem 30 years ago, my back is still screwed up - in fact, I am feeling pain there this very moment.

Friday, June 29, 2012

Smile! It's good for you! 

Enjoyed this article on Psychology Today's "Laughing Cure" page. Apparently, we can add smiling to our list of healthy habits:

There's Magic in Your Smile

I have always wondered if part of the reason I got so many dates in college and my pre-marriage 20's was that I smile a lot. I would say I'm about average in general attractiveness, but maybe appearing friendly helped? I do notice people are more likely to listen to what I have to say when I smile. The only exception seems to be doctors, who assume that my smile means that I must not be sick. Wrong! I do it because a smile, even if forced initially, becomes a natural pain-fighter. And I need all the help I can get.

Thursday, June 28, 2012

Fibromayalgia: beyond the "fad" diagnosis.... 

Came across this on a fibromyalgia Facebook page. While the grammar is pretty bad in this article and some of the examples are kind of a stretch, it is true that the symptoms of fibromyalgia are nothing new:

Famous fibromyalgia people remind us that fibromyalgia has always existed

The main reason fibromyalgia seems like a trendy ailment is that it had different names in the past. From the early 1900's until 1987, it was called fibrositis. Prior to that, it was called neurasthenia, and before that, it was variously described as chronic rheumatism, myalgia, or pressure point syndrome. So only the name is of recent origin.

Obamacare is here to stay (at least until November)! 

Got this in an e-mail today. It sums up my feelings on the subject pretty well....

More Than a Victory, the Decision Today Was a Mandate for Us to Act ...an end zone dance from Michael Moore

Thursday, June 28th, 2012

Dear Friends,

Even though it's been a few hours now, I'm guessing you're still pinching yourself to make sure you're not dreaming. But yes, it happened. At 10:07 this morning, the conservative Chief Justice of the U.S. Supreme Court, John Roberts, not only joined with the liberal justices to completely uphold almost every single part of the Obama health care law, he wrote the majority opinion himself! In fact, he went even further. When he realized that the government had poorly made its constitutional case to the court, he went searching for a clause in their argument and the constitution that would give him the justification he needed to back the administration and to insure that his decision would hold up legally. In other words, even though he is on the opposite side of the political fence, he wrote the Dems' paper for them. Stunning.

The other four justices? They didn't just vote to overturn the individual mandate part of the law, they all voted to kill the entire Act.

The media is already spending much time talking about the mandate being the "centerpiece of the law," but the real news is that if you ever have a pre-existing condition, you cannot now be denied insurance. If you are a young adult without health insurance, you can now stay on your parents' plan until age 26. The insurance company can no longer say there is a lifetime cap to your coverage. The insurance companies are now required to spend 85 cents out of every dollar they take in on actual reimbursement for your health care – not on profit or "administrative costs" (some companies have been taking over a 30% cut; Medicare's total percentage of their budget for administrative costs: 2%).

I know that our side is not used to victories and so we're not quite sure how to respond when we get one out of the blue. For some of us, the first inclination is to point out just how weak the Obama law actually is, that it doesn't provide true universal health care (26 million will STILL be uninsured), and that it leaves control of the system in the hands of the vultures, otherwise known as the health insurance companies. The individual mandate was a huge gift to the private insurance companies, guaranteeing them billions more from millions of new customers. And many of the key provisions of this law don't even take effect until 2014 – and if the Republicans win in November, you can kiss all of that goodbye.

So, yes, the bill is highly flawed and somewhat wrong-headed – but what it IS is a huge step in the right direction. And today's court decision cements that. The right wing knows this and they are probably unraveling in some not-so-pretty ways right now. And that's why today is a great day. The Right has been smacked down by one of their own! They know what we all know — that the path of history has been, and will continue to move toward the basic human right that all people are entitled to see a doctor and NOT have to worry about losing their home because they can't afford to pay the medical bills. Those days are over, or will be soon, and that is where civilization is headed. It's not headed back to the days of Oliver Twist. Today's victory is momentum, it's forward motion, and we WILL have true universal health care in this country in the not too distant future.

So take some time tonight to celebrate; this is a victory for the people. Actually, more than a victory, it is a mandate that all of us must now make sure that a second-term Obama continues to move the ball down the field, toward a system like they have in every other First World country on the planet. He simply has to improve Medicare and then expand it to every citizen in the country. The countries that do this, their people live an average of two to four years longer than we do. Is there a reason anyone doesn't want an extra four years of their lives? Or that our babies would have a better chance of surviving their first year like they do in the 48 countries that have a better infant mortality rate than we do? Exactly who is opposed to this? You'd have to be a bit…crazy.

And that, I've come to believe, is the true divide in this country. It's not blue state vs red state, liberal vs conservative, Democrat vs Republican. The split we have in America can be boiled down in its simplest form to this: On one side are the people who believe Adam and Eve rode on dinosaurs 6,000 years ago – and then there's everyone else. On that first side are the people who've been fed a diet of fear and lies and hate. And who is feeding them? The 1%. The richest people in the country, the ones who aren't done with us yet because they still don't have enough wealth, have done their best to dumb down the population through destroying our educational system and using media to provide them with a vastly distorted sense of reality. The rich's only obstacle is that they only hold 1% of the votes in the country. So they have to try to get a slim majority of Americans to vote their way. And fear, plus keeping them stupid, usually works.

So that's the battle ahead of us: Organizing and mobilizing the majority of Americans to push for true universal health care, Medicare for All. At one time, back in Illinois, that was the position held by Barack Obama. He will not make this happen on his own. He will only be able to do it when the mass of American people rise up and demand it. Demand it. Why not start tonight?

Five years ago this week, my health care documentary, Sicko, opened in theaters across the country. I have spent the better part of the decade on this issue, and for me, personally, fully aware of the current law's limitations, I am very happy with today's news – not because of its specifics or nuances, but because it is a road sign, and that sign points in the correct, humane and sane direction. THAT makes this a great day.


Michael Moore

Book Review: "How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers" by Toni Bernhard 

Here you are with a chronic illness, maybe an incurable one. You've been to all the doctors, taken your prescribed medication, maybe changed your diet or gone to physical therapy if that applies. But have you done anything for your spiritual health? What coping skills do you need for what might be a lifetime of sickness?

In "How to Be Sick", Toni Bernhard recognizes the immense challenge of thriving emotionally when your quality of life is no longer what you expected. She herself experienced severe chronic illness of sudden onset. She went from having a fulfilling career as a law professor and going on a dream vacation to Paris to a woman who was bedridden, sometimes for months at a time. She went through the initial reactions most of us have experienced - bewilderment, anger, grief, misplaced hope, depression. But over time, she realized that her faith was the key to regaining equilibrium.

While the author is a practicing Buddhist, the reader does not have to be one in order to be enlightened by "How to Be Sick". The goals for the chronically ill and their caregivers are nearly universally the same: to promote calm and satisfaction, to develop acceptance of life changes while not extinguishing hope, to find beauty in the world again. Through the various practices outlined in the book, the reader is given the basics with which to proceed.

How many times have we pined for the past when things were "normal"? In life there is one certainty, and that is that everything changes. Some of the changes are upsetting, like the onset of chronic illness, but some are sweet, like finding love or the joy of new life. We have a tendency to focus more on what's going wrong in our world than what's going right. In the chapter on the Universal Law of impermanence, Bernhard reminds us that without winter, we wouldn't fully appreciate the beauty of spring.

Another universal truth is that unpleasantness is a part of every life. The details of unsatisfactory experiences and circumstances vary from person to person, but could you name anyone who hasn't been disappointed by something? While this may seem like pessimism, it means that no one is alone. The knowledge of this can be quite important to those who feel isolated by illness.

One practice that Toni Bernhard recommends is cultivating joy and compassion for yourself and others. Most faiths have some variation of The Golden Rule, which states, "do unto others as you would have them do unto you". Having compassion for others is therefore something with which most of us are familiar, but how do we treat ourselves? Most of us are much harder on ourselves than anyone else, whether it be blaming ourselves for not doing more, calling ourselves stupid when we forget something, feeling guilty about the effect our illness has on our loved ones. When we are gentle and forgiving of ourselves, our compassion for the rest of the world increases. Experiencing joy for others, especially when they are doing things we no longer can, is a huge challenge. Toni says that when she first tried this practice after becoming sick, the joy felt artificial because she so envied those who were healthy. But if you persist, in time you will find that the joy of others becomes your joy too.

A mind state essential to coping with chronic illness, or caring for one who is ill, is that of equanimity. That is the ability to be calm and even-tempered in the face of difficulty. Keeping the effects of stress to a minimum is a known health benefit. Most of us have good days and bad days in the course of our illness, and these ups and downs are not necessarily predictable. If we are to successfully navigate the frustrating avenues of the health care industry, we must develop patience and a calm assertiveness. We must endure thoughtless and even hurtful comments and attitudes of those around us. And we must figure out ways to thrive despite loss. Toni teaches us that sometimes we must cultivate equanimity in baby steps due to the overwhelming nature of illness, but if we can let go a little, then we can let go a little more, until we discover that we can survive just about anything.

The human mind is a chaotic place. We cannot stop ourselves from thinking, but we can stop ourselves from believing everything that crosses our mind. In Chapter 12, Toni introduces what she called "inquiry practice", in which we question disquieting thoughts upon which we have become fixated. Much of our catastrophic thinking is merely an exaggeration of reality, and if we can redirect ourselves to focus on the truth, we can unburden ourselves.

Another process that happens in the chaotic mind is when memories of the past and fears of the future crowd out our awareness and enjoyment of the now. Toni details a two-step exercise to guide us back to focusing on the present, which can be a source of great relief. How much wonder and beauty have we missed in the world because we were preoccupied with something that already happened or something that may never happen?

Toni Bernhard says that because those of us who are ill or care for someone who is ill have limited energy and mental resources, how we reach out to others matters. We can build bridges with our speech or we can isolate ourselves even further. Essentially, we are creating a world with what we write and say. Therefore, if we want to speak wisely, we will only say what is true, kind and helpful. Consider these three criteria before you make a comment on Facebook or hit "send" on an e-mail message. Sometimes this entails not inundating friends and family with every single detail about your illness, or saving certain topics for those who are like-minded. Be aware of idle chatter as it may devolve into hurtful speech.

A chapter which is particularly relevant is "The Struggle to Find Community in Isolation". For some of us, leaving the house with family and friends or even conversing with them on the phone is out of the question. Chronic illness can change us so much that our relationships are impacted, not always for the better. Our besties may simply drop away from our lives. Caregivers become more isolated too. But does the fact of being by yourself in the room necessarily mean you have to be lonely? Toni highlights the important differences between isolation and solitude.

The exercises outlined in "How to Be Sick", while numerous, are simple yet profound. They are something we can turn to over and over again when we are overwhelmed by illness and all it encompasses. At the end of the book is a segment entitled, "A Guide to Using the Practices to Help with Specific Challenges". I could see turning to this section after a disappointing experience with a doctor, when I feel I can't stand one more minute of pain, when my mind won't quit chattering and I can't relax.

"How to Be Sick" teaches us that we can become spiritually gentle yet strong if we are open to the process. While there may be very little about our illness that we can control, we do have some say in how we react. And that may make the difference between simply existing and thriving.

Title: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
Author: Toni Bernhard
Publisher: Wisdom Publications
IBSN: 0-86171-626-4

Wednesday, June 27, 2012

How to alienate the chronically ill.... 

The latest from Toni Bernhard's column in Psychology Today. There have been many variations on this theme, some I probably even wrote myself, but this is pretty good:

What Those with Chronic Pain or Illness DON'T Want to Hear You Say

Speaking of Toni Bernhard, I have finished her book and in the process of writing a review. It is coming along way too slowly for my satisfaction, but I'm in a flare, so it will take some patience for me to get my brain to cooperate. The fog has got to lift at some point, right?

Sunday, June 24, 2012

The erasure of the middle class.... 

Got this from the Facebook page of People For the American Way. Guess I shouldn't be surprised that it's about a city where I can no longer afford to live:

In suburban America, middle class begins to confront poverty

Hey, it doesn't take much to cross the line from okay financially to floundering. One layoff, one person becoming disabled (that's what happened to me), house fire, "act of God". I'd like to see all the politicians live on the equivalent of a Social Security check for a year (about $12,000 not counting Medicare deductions), no pensions, no retirement accounts, no fancy Congressional health insurance, NOTHING extra. Bet they'd be at the food bank before a month was up.

Irritable bowel? Maybe not.... 

This was posted today on a fibromyalgia Facebook page. While it studied CFIDS/ME patients, I'm pretty sure the results would also apply to people with fibromyalgia:

Gastric emptying is slow in chronic fatigue syndrome

I've spent a considerable amount of fibromyalgia message boards lately, and I have been astounded at the number of people with GI symptoms whose doctors have labeled it as "irritable bowel" without proper testing. I think it would be a good idea for those people to have a gastric emptying test to rule out gastroparesis. I had no idea it was this common; when I was diagnosed with it in 2003, I was told it was rare. Apparently not.

Do you have a Roger and Jessica Rabbit romance? 

One of the Psychology Today articles I found on humor. This one deals with when it works for couples, and when it doesn't. 

Crack Me Up

The irony is not lost on me that even though I value amusement highly, my first marriage was to a man whose sense of humor did not match my own. Luckily, I got it right the second time. With all the not-so-funny things that have happened during the past 15 plus years since I met Dan, being able to relax and joke around is more important to me than ever.

Saturday, June 23, 2012

The reality behind the judgments.... 

This excellent article was posted on a fibromyalgia Facebook page. I'm guessing the author has experiences some of this firsthand:

Persons with invisible illness suffer undue criticism

Most people have been polite enough to not criticize me to my face, but I have been dismissed as "weak" and told that my illness was "too convenient" when it appeared I was trying to get out of something I didn't want to do. I've overheard someone complain that there was obviously nothing wrong with me when they saw me park in a handicapped space using my placard. It has also been implied that my illness was attention-seeking behavior. Oh, yeah, I do the whole partially housebound, trying to survive financially on disability thing just for amusement.

Friday, June 22, 2012

Everything you ever wanted to know about PEM.... 

Another from the CFIDS Association of America newsletter for June. You may want to bookmark this page so that you can read the listed articles at your leisure:

Post-Exertional Malaise: Resources for You

This, combined with cognitive dysfunction, is the primary reason I cannot work or many days even leave the house. I am pleased to see so many stories have been done on the subject because it is also one of the most difficult to get anyone to take seriously. My first warning is usually what I call "the sledgehammer of fatigue": a profound, sudden exhaustion akin to being walloped in the face with a blunt object. Many other symptoms accompany it, especially in the hours to follow, but once the sledgehammer hits, the only remedy is to stop whatever I'm doing, get home if I'm not already there and stay there until the situation improves.

CFIDS/ME linked to lymphoma.... 

This comes from the June edition of the CFIDS Association of America newsletter. I think I have read of this study before but do not recall whether I posted a link:

Risky Business

Knowing that Sjogren's and celiac disease are also linked to non-Hodgkins lymphoma, I wonder if the mechanism is the same?  Perhaps it wouldn't hurt if those with CFIDS/ME went on a gluten free diet just in case they also had undiagnosed celiac disease? At any rate, I hope a lot more research is done.

Thursday, June 21, 2012

These ought to at least make you smile.... 

The latest article from Toni Bernhard. You know how much I love inspired laughter:

Humor as Medicine: 20 Quotations about Health

This is part of a larger group of articles on the subject of humor. I haven't had a chance to read the others yet, but plan to do so. I will share any I particularly enjoy.

Well, this would explain a lot... 

Got this interesting article from a fibromyalgia Facebook page. These days, migraines are considered a disease state:

Migraine Genes Pinpointed By Researchers

I am quite sure migraine genes run in my family. My grandfather had them when he was alive. Also, an aunt along with a few cousins and my sister continue to have them.

Tuesday, June 19, 2012

Bookmark this if you take supplements.... 

Another goody from a fibromyalgia Facebook page. It's a handy chart where you can look up herbal supplements and see if they have any known effects on prescription medications:

Herb Interaction

As always, if you are taking supplements, please make sure you tell ALL your doctors about them at EVERY appointment. If necessary, keep a typewritten list of both your medications and your supplements and carry it with you when you leave the house. You never know when you might find yourself in a situation like an automobile accident where you end up in the emergency room and in the chaos forget what you take and the dosage.

Monday, June 18, 2012

Primer on hypothyroidism.... 

 Got this from a fibromyalgia Facebook page. It occurs to me that I haven't posted very much on thyroid function, so here is a good place to start for info:

Hypothyroidism Symptoms

I first found out my thyroid function was low in 2001. But the parameters of the TSH test were quite wide then, so a reading of 5 was considered only borderline even though I felt as though I could literally drop dead from exhaustion. My eyebrows were also falling out, which is a classic symptom (oddly, one not mentioned in the Mayo Clinic article). My doctor insisted I was fine and refused to treat me, so I had to find someone using the newer recommendations that the TSH be under 2. I went on the synthetic thyroid medication, but didn't feel any better despite the improvement in the test results, and the newer doctor wouldn't let me try anything else, so the search for doctors was on again. Finally, in 2003, I found a physician that would prescribe Armour thyroid, which is natural pig thyroid hormone. That did the trick, and I've been on that ever since (except for a brief period where you couldn't get it in the United States).

ANOTHER part of my past up in smoke.... 

This week, lightning struck my family's cabin in the Colorado mountains. It was built 50 years ago by my grandfather and uncle on land with the most amazing view of snow-topped peaks. The firefighters got there amazingly quickly considering the difficulty of access (steep inclines at high elevation, narrow dirt roads), and they did a wonderful job of keeping the fire from spreading very far. No one was there at the time, and the neighbor's homes were unscathed. But our cabin was a total loss.

Some of my very best childhood memories occurred in and around that cabin. My cousin, sister and I would go up there with my grandmother on weekends between Memorial Day and Labor Day (the weather could be prohibitive the rest of the year). We would hike, pick wild raspberries, scamper up rocks like mountain goats, invent silly songs, roast marshmallows, eat scrambled eggs with ketchup on them, and hand feed the chipmunks and Clark's nutcrackers (birds).

When I was older, I would go to a huge rock formation on our land, gaze in awe at distant peaks, laugh at the hummingbirds whizzing by my head, and write poetry. There were a couple of years that bald eagles nested nearby. I think I only took Dan up there one time before I got too sick to hike anymore.

The stone fireplace still stands. But I don't think we'll be able to rebuild; none of us has the kind of money it would take to start over. I hope like hell we don't have to sell the land even though that might prove to be the most practical solution.

What I wouldn't give to return to the rock where I wrote poetry, while it's still ours.

Sunday, June 17, 2012

This ain't necessarily just kid's stuff.... 

Came across this in the Celiac.com newsletter for February 20th.  Apparently, people are getting diagnosed in their 60's:

Celiac Disease in the Elderly

Think how much more difficult it would be to change your diet when you've been eating the same way for many decades. I wonder if those people are less likely to follow their doctor's advice? Of course, I suppose you could look at it the other way and wonder if when young people are diagnosed, they are daunted by the idea of having to follow a special diet for the rest of their lives.

What an ME exacerbation feels like.... 

Rave of the Day for June 17, 2012: 

These Father's Day funnies come from the last remaining archives circa 2003. I'm guessing Ducky may have sent it to me in an e-mail originally.....

Dad's Top Ten Diapering Tips

Mothers prefer diapers with Disney cartoon characters over those featuring Beavis & Butthead or Itchy & Scratchy.

A clean disposable diaper makes a great snow bonnet.

The Ride of the Valkyries at high volume can soothe a crying baby during a diaper change.

Diapers don't do well in a compost heap, not even if you run them through the mulcher first.

Check every trash can in the house daily for dirty diapers, especially the one in your study.

If you're ever tempted to swear during a 4:00 a.m. diaper change, turn off the baby monitor first.

For a great diapering experience, fire up Brahms' Lullaby on every music box, plush toy and baby mobile you've got.

By the time you think to check it, you needn't bother -- the diaper is always wet.

Don't expect to ever look at peanut butter the same way again.

 Beware the dreaded Fountain of Youth! The kid got me right in the eye!


Top 10 Things You'll Never Hear a Dad Say

10. Well, how 'bout that? I'm lost! Looks like we'll have to stop and ask for directions.

9. You know Pumpkin, now that you're thirteen, you'll be ready for unchaperoned car dates. Won't that be fun?

8. I noticed that all your friends have a certain hostile attitude. I like that.

7. Here's a credit card and the keys to my new car. GO CRAZY!!

6. What do you mean you wanna play football? Figure skating's not good enough for you, son?

5. Your Mother and I are going away for the weekend. You might want to consider throwing a party.

4. Well, I don't know what's wrong with your car. Probably one of those doo-hickey thingies--ya know--that makes it run or something. Just have it towed to a mechanic and pay whatever he asks.

3. No son of mine is going to live under this roof without an earring. Now quit your belly-aching, and let's go to the mall.

2. Whaddya wanna go and get a job for? I make plenty of money for you to spend.

1. What do I want for Father's Day? Aahh -- don't worry about that. It's no big deal. (Okay, they might say it. But they don't mean it)

Inspiration of the Day for June 17, 2012: 

Father's Day Poem
- Joanna Fuchs

Lord, please bless our fathers,
these men who mean so much to us,
who are greatly responsible
for who we are and who we are becoming.

Bless them for having the courage
to do what's necessary to keep us out of trouble,
for making us do the right thing,
for helping us build our character,
even when it makes us angry;
and bless them for pushing us to do our best,
even when they just want to love us.

Bless our fathers for being our protectors,
for leading us through stormy times to safety,
for making us believe that everything will be all right
and for making it so.

Bless our fathers for quietly making a living
to provide for those they love most,
for giving us food, clothing, shelter
and the other material things that really matter,
for unselfishly investing time and money in us
that they could have spent on themselves.

Bless our fathers, Lord,
for saving some energy for fun,
for leading us on adventures
to explore the outer reaches of ourselves,
for making us laugh,
for being our playmates and our friends.

Bless them for being our secure foundation, our rock,
for holding on tight to us...until it's time to let us go.
Lord, bless these men we look up to,
our role models, our heroes,
our fathers.
In Jesus' name we pray, Amen.

Saturday, June 16, 2012

The universal symbol for relief..... 

Came across this in the Celiac.com newsletter for February 13. Finding safe food in Europe just got easier:

New Universal Gluten-free Symbol for European Food Packaging

I would love it if the next time I sent Dan to the grocery store, I could tell him to just look for a blue circle logo on the food he buys me. We have some serious problems in the United States with confusing and inconsistent labeling. One shouldn't have to be a professional nutritionist to be able to figure out whether a given food contains gluten.

The best time to find out if you're gluten intolerant? NOW! 

Here's an article from the February 13th edition of the Celiac.com newsletter. It reminds us of why it's best not to wait for your symptoms to get worse before trying a gluten-free diet:

Importance of Early Gluten Sensitivity Diagnosis

I find it mind-blowing that as many as 15 percent of the population may have a reaction to eating gluten, and most of the medical community won't advise a gluten-free diet until there is measurable intestinal damage. What's the harm in avoiding wheat for a few weeks and see how you feel? It wouldn't be the end of the world.

Friday, June 15, 2012

The "crash and burn" phenomenon in ME.... 

What the greed for profits can do to the safety of the food you eat..... 

Got this out of the Celiac.com newsletter for February 6th. It's certainly an eye-opener:

What You Need to Know About False Gluten-Free Labeling

We have GOT to get proper gluten labeling in the United States! It's just inexcusable that someone with celiac disease can get violently ill from eating something which is clearly labeled "gluten free". I do wish I could eat more fruits and veggies because then I wouldn't need to depend on specialty grain products.

Thursday, June 14, 2012

I wish I'd these options when I was in school.... 

This comes courtesy of the January 30 edition of the Celiac.com newsletter. With all the cutbacks in education funding, this came as a surprise to me:

Schools Offering Better Food Options for Students with Celiac Disease, Other Food Concerns

The food was fairly tasty when I was in high school as I recall. It was an area with primarily Mexican and Italian heritage (usually about third generation), so burritos, spaghetti and the like were the norm. But in college, I experienced culture and cuisine shock when I moved from Colorado to Kansas. Breakfast was usually biscuits and a greasy sausage gravy. I would usually opt for eggs, which were acceptable once I soaked the grease off with a napkin. The meats for lunch and dinner were usually chicken fried, breaded and covered in a grotesque gravy. I pretty much lived off the salad bar.

A common supplement may help with headaches.... 

Lots of articles on fibromyalgia Facebook pages tonight. This one was news to me:

Why All Migraine Patients Should Be Treated with Magnesium - Source: Journal of Neural Transmission, May 2012

Interesting that so many fibromyalgia patients also need supplemental magnesium. If I don't take quite a lot of it, my muscles cramp terribly and the uncontrollable twitching gets even worse. I honestly hadn't considered whether it was helping my headaches.

A possible long-term effect of ME.... 

Thought this was very interesting. Got it from a fibromyalgia Facebook page:

ME/CFS associated with later life non-Hodgkin lymphoma: Medicare statistics

Autoimmune diseases with a higher incidence of non-Hodgkin lymphoma include Sjogren's syndrome (40 times greater) and celiac disease. I happen to have all three. A biopsy in 2005 of one of my lymph nodes revealed abnormal cell development. While it was not lymphoma, it could be described as pre-cancerous. It's something my doctors are keeping an eye on. So far, so good.

Wednesday, June 13, 2012

A situation where large quantities of certain veggies are actually harmful.... 

Got this article from the Redefining Normal Fibromyalgia Facebook page. This is a subject about which many people, even some doctors, are completely in the dark:

All About Goitrogens - Why Thyroid Patients Are Warned Against Cruciferous Vegetables

I know I was clueless about this the first year or so after I was diagnosed with hypothyroidism. I was eating huge quantities of broccoli (I love the stuff) until a co-worker with Hashimoto's told me what it does to thyroid function. Some of the stuff on this list was news to me, like peanuts, strawberries and spinach. But since I developed gastroparesis, my consumption of these is limited to very small portions, so I am probably okay. It's a good thing to keep in mind, though.

Our non-human friends.... 

This blog entry is courtesy of last month's Hummingbird's Guide to M.E. newsletter. It's about critter companionship:

Pets with M.E.

I wish I was well enough and could afford to have another dog. I still miss Chip, my English springer spaniel, who died in 2008. I could for now I'll just have to take comfort in reading abut other people's pets.

The earlier you know, the sooner you can do something about it.... 

This comes from the January 23rd Celiac.com newsletter. It's a similar theme as my last post, but still interesting:

Should We Have Mass Screening for Celiac Disease?

It has got to be frustrating as hell to have a child with undiagnosed celiac disease, wondering if all those "stomach aches" are something serious or just a kid trying to get out of going to school. And then your child begins to show signs of malnutrition, or has behavioral problems or some of the other more alarming symptoms that might accompany the stomach discomfort. Pediatricians are probably a lot more on the ball than they were when I was a kid, but some have been slow to come around to the idea of testing for celiac disease.

Tuesday, June 12, 2012

Why celiac testing should be done much earlier than it usually is.... 

 This was in the January 16th edition of the Celiac.com newsletter. I hope that, over time, greater awareness of celiac disease will improve these statistics:

How Does Delaying Diagnosis Impact People with Celiac Disease

I had stomach issues even as a child. I would get the "flu" every time I traveled because we would eat a lot of sandwiches. Doctors told my parents I had a "nervous stomach". If I got sick while away from the rest of my family, it would be blamed on homesickness. And whenever a bug actually was going around and I got it, I would be fed saltines as my first solid food and then would get diarrhea so bad that I would pass out from dehydration and have to go to the emergency room. I could have saved myself decades of symptoms had anyone figured out that I might be reacting to gluten.

What to try for fibromyalgia when medication fails.... 

Got this from a fibromyalgia Facebook page. It's a pretty comprehensive list:

Non-Drug, Trigger Point and Alternative Fibromyalgia Treatment

I do and/or have tried most of the items in the article. One thing I am considering is laughter yoga. Yes, I realize how insane that sounds, but think of it: laughter releases endorphins, nature's own pain reliever. And apparently, it doesn't matter if the laughter is in response to something funny or part of a physical workout routine. Besides, I really LIKE to laugh.

Steps to spiritual healing.... 

Here is the latest article by Toni Bernhard. It tells us why compassion for self is an essential element of coping with chronic illness:

Mindfulness: Potent Medicine

I came to some of these same conclusions, via a different route, over the past 15 years of being sick. I found that ignoring it doesn't make it go away, but that getting stuck in a fatalistic frame of mind doesn't help either because it leads to physical tension that leads to even more pain. Acknowledging that I am suffering without letting it overwhelm my entire being didn't happen for me overnight, and I still have my freak out moments (for proof, see yesterday's post about the CDR), but generally, I am able to save room for happiness.

Monday, June 11, 2012

Answers to some of your Social Security disability questions.... 

This is the blog of the man who did the video (below) on continuing disability reviews. Might want to keep this handy if you have or think you will apply for benefits:

The LegalBEAT

I think I will add this to my Links list as well. The more info we have available, the better. And his articles are easier to understand than some lawyer's blogs I've read.

The dreaded time has come.... 

I received a Social Security Continuing Disability Report (CDR) form yesterday, four years late. I am freaking out (something I almost never do) because I no longer have the excellent medical doctors I had when I applied in August 2005. If this gets thrown into a full medical review, I could lose my SSDI. I frankly forgot all about this and haven't requested medical records from any specialists since 2008, so I have no idea whether my current rheumatologist's records would be helpful or harmful (there are NO good rheumatologists in my area, so I'm putting up with the one that disagrees with me the least). 

I was originally awarded SSDI in May 2006 on the basis of "a complex multisystem illness of unknown etiology". The ailments listed were Sjogren's syndrome, diabetes, hypothyroidism, neuropathy and limb movement disorder. I didn't pursue fibromyalgia at that time because it's not on Social Security's list of disabling conditions. I gave them medical records spanning eight years and 23 doctors. They still sent me to a Social Security doctor, who concluded that I could not work. I have not improved since then, but I don't have as much medical data since I moved to South Dakota in November 2006 because after you have tried every medical treatment and are broke, you go to fewer doctors and less often. That can be (wrongly) interpreted as that you aren't as sick anymore. I was expecting a review in 2008. That shows you how overloaded Social Security is, that they are just now reviewing me. I'm glad for those four years, but I wonder if they are more likely to drop people's benefits in today's economy to save money?

After all we must go through to get approved for disability in the first place, I guess it's only natural for me to get a little paranoid if there is even a hint that it might get taken away again. If I were over age 50 or had been on disability for at least 15 years (I'm 48 and have been on disability for seven), chances would be much smaller that I might lose benefits. But one thing on my side is that since I was approved in 2006, Social Security has added Sjogren's syndrome to their list of disabling conditions. That's the primary condition I was approved for. Plus since I was approved, I spent two weeks at the Mayo Clinic, where they found lesions on my brain and diagnosed me with asthma in addition to the fibromyalgia and all the other stuff going on.

Another reason I slacked off on the medical records is that I had to go through four rheumatologists in Sioux Falls before I found one that would even treat me. I hope that being her patient for four years has been sufficient to prove that I'm not going to improve enough to go back to work. My primary care doctor was awesome, but she left medical practice a year ago. I don't know much about her replacement because I only saw her twice. 

Well, I have the form filled out. I'm giving it to Dan to make copies before I mail it. They have 90 days to make a decision as to whether they do a review in greater detail or simply continue benefits. The in-depth review is pretty much the same as starting all over, so I'd better get everything in order in case that happens. Don't let anyone convince you that disability is Easy Street. It is more closely resembles Jump Through Hoops Like a Circus Animal Street.

Rave of the Day for June 11, 2012: 

Saw this in my church newsletter the other day and thought it was hilarious! Enjoy....

Seven ways to know you're not reading your Bible enough:

1. You think Abraham, Isaac and Jacob may have had a few hits during the 80's.

2. You open the Gospel of Luke and a WWII Savings Bond falls out.

3. Your favorite Old Testament patriarch is Hercules.

4. You become frustrated because Charlton Heston isn't listed in either the Bible concordance or the table of contents.

5. Catching the kids reading the Song of Solomon, you demand, "Who gave you this stuff?"

6. You keep falling for it every time the pastor tells you to turn to First Condominiums.

7. The kids continue to ask too many questions about your usual bedtime story, "Jonah the Shepherd Boy and His Ark of Many Colors".

- Ginghamsburg (Ohio) UMD Newsletter

Sunday, June 10, 2012

Useful info on CDRs.... 

I got my notice in the mail yesterday. Trying to get it figured out and ready to send by tomorrow, so I will post details on my case later. But for now, here's an easy to understand overview of continuing disability reviews:

Friday, June 08, 2012

Dan found this for me.... 

This looks pretty handy. There are 6000 products listed - just do a search on a name brand or food type, and you'll get all the ones known for certain to be gluten-free.

GF Overflow

I've been on a gluten-free diet for nine years, and I still get a curve ball every once in awhile. For instance, ground turkey was on sale last week, and I put it on the grocery list. Dan, who does all the grocery shopping, came home with the brand I had asked for, but had accidentally bought an "Italian style" seasoned variety. The label didn't say it was gluten free, but didn't specifically say it contained wheat, either - the ingredients were very vague. I looked it up, and the pre-made Italian style meatballs made by the same company were listed as containing gluten, but there was nothing on the company's website about the ground turkey. Luckily, Dan found the site listed above, and now I've got the green light to use the turkey. But I will have to figure out an Italian dish to use it in. Will probably just cook it up and crumble it, add some tomato sauce and garlic and put it on some brown rice penne pasta.

The skinny on fats.... 

Got this from the Fibrohugs fibromyalgia Facebook page. This is something worth looking into whether you are healthy or not.

Anti-Inflammatory Diet: How to Balance Omega-3 and Omega-6 Fatty Acids

I believe I am getting closer to being balanced. I take a fish oil supplement and eat whatever flax seed I can tolerate (gotta be careful not to aggravate the gastroparesis). I eat few processed foods, no fast food and no trans fats. My meat consumption is fairly limited. I found a brand of sardines in olive oil that I like. I make my own dressing with extra virgin olive oil. I've been using peanut oil in my stir fry dishes, but I may try virgin coconut oil. I have used real butter for years rather than the fake spread with all the chemicals in it.

Why you might wanna quit (or at least cut back on) yer bitchin'.... 

Here is the latest Toni Bernhard article. It makes some good points:

Constant Complaining: Does It Serve Us Well?

I allow brief complaints in my life, usually just a statement (or profane word, heh heh) that I don't like a situation. Once expressed, I feel I have purged it from my system and try to immediately focus on fixing the problem if that's possible. If the situation is beyond my control, I instead think of something pleasant or something to which I am neutral. If I allow myself to get stuck in dissatisfaction mode for more than the time it takes to express it, my already huge fatigue level will climb, and that's too high a price to pay.

Tuesday, June 05, 2012

False negative biopsies are more common than you think.... 

The January 9th newsletter for Celiac.com contained this article. Apparently, there are some cases of celiac disease that are being missed:

Diagnosing Celiac Disease: Small Bowel Histopathology Results Can Vary Among Pathology Practices

This brings up some nerve-wracking questions: How does one know for certain that the lab processing their biopsy is a reliable one? If your biopsy is negative, do you re-test in the future? Or do you just trust that the sample taken in your original biopsy is representative of your entire small bowel and that the results weren't misinterpreted?

Who needs a reality check? 

Found this in the January 9th edition of the Celiac.com newsletter. It's a reply to a story that doubted the benefits of a gluten-free diet:

Dr. Ron Hoggan Responds to The Atlantic's Article: A Gluten-Free Diet Reality Check

When my blood work for celiac disease came back negative, my gastroenterologist told me I could go back to eating wheat. But I chose not to, and lo and behold, I felt incredibly better two months into being gluten-free. There's really no harm in eliminating gluten on a trial basis to see if digestive symptoms clear up. If it doesn't work, you have your answer and can maybe look for another cause for your problems.

A migraine is not a headache? 

Got this from a fibromyalgia Facebook page. I must admit I learned a few things:

22 Things About Migraines You May Not Know

I had no idea chronic migraine is considered a disease. But the genetic part didn't surprise me because my grandfather, aunt, cousin and sister have all had them too. And I thought the aura part was more common that it really is (I don't have that).

Brain drain? 

Another article courtesy of the May 9th CFIDS Association of America newsletter. This one points to differences in the brains of those with CFIDS compared to healthy individuals:

New Clues to Chronic Fatigue Syndrome

I wonder if these differences are due to the CFIDS patients being too exhausted to care whether or not they got a reward for the right guess in the experiment? Because even simple decision-making can really wipe them out. Whatever the cause, I hope someone figures it out.

Monday, June 04, 2012

The study of Post-Exertional Malaise... 

Another article from this month's CFIDS Association of America newsletter. This discusses whether Post-Exertional Malaise is essential to a diagnosis of ME:

To PEM or not to PEM? That is the question for case definition

To me, Post-Exertional Malaise is what separates the extreme exhaustion of ME from the mere tiredness a healthy person gets after a busy day. I'm glad the article mentions that PEM can happen after mental activity, not just physical. I get wiped out by simple things like phone calls, reading, and yes, even blogging. And when I overdo it physically, the consequences can last anywhere from two or three days to months. Even things like vacations, which healthy people do to relax, make me ill for weeks afterward. Some aspects of my illness even become permanently worse after a major event, like when I moved to South Dakota.

Sunday, June 03, 2012

Progress on the diagnostic front for CFIDS/ME? 

This article appeared in the May 9th edition of the CFIDS Association of America newsletter. It highlights two different studies but finds a common link between them:

From Discovery to Application

I am finally on the current edition of this newsletter. I have one more Hummingbird's Guide to sort through. But the Celiac.com newsletter is still six months behind because unlike the others, it comes out once a week instead of once a month.

Saturday, June 02, 2012

Bouncing back from celiac disease.... 

Found this in my January 2nd Celiac.com newsletter. After this publicity, I wonder how many athletes will try going gluten free?

Gluten-free Diet Now Fuels Tennis Star Andy Murray

It is so easy to take what you eat for granted. How many times have we been at a party, spied something that looks yummy and just pop it in our mouths without considering what it might do to our bodies? The convenience factor is definitely something I miss, but most of the food I eat now is healthier than what the average American consumes.

Two of the Push Girls appear on "Ellen".... 

Hip hop on wheels.... 

New show about glamorous women in wheelchairs debuts Monday night on the Sundance Channel.... 

Friday, June 01, 2012

Making progress.... 

This item is courtesy of the December 27th edition of the Celiac.com newsletter. Perhaps the recent increase in media exposure has helped?

Awareness of Celiac Disease and Gluten Intolerance Growing Among Chefs and Public

One thing the article doesn't mention that I have noticed the past few years is a backlash by people who are convinced that gluten free diets are just a fad and not really necessary. Their rationale is: "it's not like you would actually DIE if you ate wheat!" No, most of us wouldn't die (a few might from severe complications like lymphoma), but why would we want to make ourselves sick at any level if we didn't have to?

Just the trailer chokes me up.... 

Got the link for this from last month's CFIDS Association of America's newsletter. It is a review of a documentary about ME by a man who himself has ME. The review was edited by Roger Ebert:

A howl of desperation for those who cannot howl

I have not yet seen "Voices from the Shadows" because it has not been available in the United States, but I had heard about it via friends in Australia and England. I hope it comes to DVD and that I will be able to rent it from Netflix at some point, even though I can already tell it will be extremely painful for me to watch. The more the reality of this disorder is made public, the more difficult it will be for the public and the medical profession to blow it off.

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