browser life

Mimi, the originator of the Peace Blogger movement, posted this link. I thought it was important to share:

My Conversation with Elie Wiesel

As I noted in the Comments section of the page, I too met Mr. Wiesel, in my high school classroom after reading "Night". It had a profound impact on me. NEVER take human dignity for granted.

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."

~Melody Beattie~

Found this link while perusing another article on the web version of my local newspaper. While this is specifically about rheumatoid arthritis, some of these could easily apply to similar ailments:

15 Things Not to Say to Someone with RA

I for one am sick to death of hearing how I should take glucosamine, avoid foods in the nightshade family, stop taking my medicine because it's bad for me, and that I am too young to have arthritis. Glucosamine doesn't work, nightshade foods have no effect on how I feel, my medication may not be ideal but it's better than nothing, and I know people of college age who have Sjogren's. But I have heard these comments enough times over the past 14 years to know when people actually mean well and when they are just being mean. So I just smile pleasantly and give an appropriate response. Sometimes that means no response at all.

I really like this author's articles. I want to read her book sometime. This post says that it is a sign of strength rather than weakness when you allow people who have volunteered to do things for you to go through with their offers:

How to Ask for Help

When I am going somewhere with someone and they ask if they can pick me up and take me, I almost always have them do it. I needed a ton of help when I was in Denver by myself for six months after Dan took the job in Sioux Falls. Thanks to thoughtful friends and family, Chip got walked, I got groceries, and the house was packed up and emptied in a mere two weeks after it was purchased.

The study described in this article is very exciting. Perhaps we are FINALLY on the road to a standard test to diagnose M.E. and/or fibromyalgia:

Genetic Expression After Exercise in Fibromyalgia & Chronic Fatigue Syndrome

The other benefit of this research is that maybe doctors will take seriously the post-exertional malaise phenomenon. I really hate getting bitched at for not exercising at a cardiovascular level. I get especially ill whenever my heart rate goes over 90 beats per minute. How on earth did the researchers get their test subjects to maintain a maximum heart rate for 20 minutes?

Another good article from Science Daily. No wonder I sometimes feel brain damaged!

Fibromyalgia Patients Show Decreases In Gray Matter Intensity

I wonder if the brain changes cause the illness, or the illness causes the brain changes? When I suggested over a decade ago that my dopamine levels were off, I was looked at by my doctors like I was insane. But it really would explain a lot.

Interesting article from Science Daily. Definitely worth trying as it won't cost much:

Music Therapy Relieves Fibromyalgia Symptoms and Improves Patients’ Quality of Life

Even though I don't really relax much when I try music therapy, I still feel it's good for me. Just the act of focusing on something else and taking a break from stress has got to count for something.

LOVE this video by Bruno Mars. It's hilarious!

Another about.com item from my browser. This offers one possible explanation for fibro fog:

"Attentional Blink" & Cognitive Dysfunction in Fibromyalgia

I definitely experience a loss of concentration, particularly during conversation, that I cannot control. I am focusing on the subject at hand, but my brain goes somewhere else without my permission, and I realize I have no idea what just transpired. I hate having to ask someone to repeat everything they just said because then it seems like I wasn't interested in the person talking.

Another goody from about.com that has been languishing on my browser. These are brief but useful suggestions for friends and family:

Things People with Invisible Illness DO Want to Hear

Offering to drive when I am going with someone is usually a great idea. I love to drive but need to save my energy for what I am going to do when I have reached my destination.

"Peace is a daily, a weekly, a monthly process, gradually changing opinions, slowly eroding old barriers, quietly building new structures.”

- J F Kennedy

One of my many links from about.com that I got from a fibromyalgia Facebook page. This is a beginner's guide to the ailment that contains some good analogies:

What's Going On? A Simple Explanation of Fibromyalgia:
Making Sense of a Complex Disorder, For Those Who Don't Have It

I don't know if I mentioned here that I've done three sessions of acupuncture? Yes, the woman with the needle phobia is actually VOLUNTEERING to be stuck with them. The trick for me is to keep my eyes closed the whole time and distract myself by focusing on my conversation with the doctor. Anyway, it has caused a subtle decrease in pain in the areas treated. It is similar to other treatment in that I hurt worse the first 24 hours, slightly worse the next day and then am noticeably better the day after that. The most surprising benefit, though, is that I am sleeping a bit better, even when I hurt worse. The benefits of acupuncture, while temporary, are cumulative. The first treatment helped for three days, the second for five days, and the last one for eight days.

Unfortunately, I'm on day nine right now and am rather ouchy at the moment. I am taking a two week break and will go back to the pain doctor June 30th to decide what to do next.

One of the fibromyalgia Facebook pages I peruse had on it a link to Social Security's online Blue Book, their listings of disabling impairments. I scrolled through it to see if there was anything new. To my surprise, in the autoimmune disorder section is Sjogren's syndrome! When I applied for Social Security disability benefits in 2005, that wasn't an option. I ended up being awarded SSDI for a "complex multi-system illness of unknown etiology".

I am a little less nervous than I was about having to undergo a CDR (Continuing Disability Review) sometime in the future because I will now fit the criteria for a specific disabling condition (fibromyalgia is still not listed in the Blue Book by name that I know of). I was subject to review as of 2008, but luckily for me, Social Security is so understaffed and backlogged that they haven't gotten around to my case yet. When they do, though, and I get their notice in the mail, I have only 10 days to get a response to them and provide proof that I am current on my doctor's visits (which is why I insist on seeing the rheumatologist every three months even though there are no new treatments to try) and have not improved significantly enough to go back to work. If I am EXTREMELY lucky, Social Security might not get to me for three more years, when I will be 50 years old. Fifty is the magical age where Social Security deems it less likely (than a younger person) that you will have recovered enough to regain employment.

Of course, it would be even better to have not gotten sick in the first place. But I can't fix that.

In case any of you are curious, here is Social Security's listing for Sjogren's syndrome, copied directly from their Blue Book:


7. Sjögren’s syndrome (14.10).

a. General.

(i) Sjögren’s syndrome is an immunomediated disorder of the exocrine glands. Involvement of the lacrimal and salivary glands is the hallmark feature, resulting in symptoms of dry eyes and dry mouth, and possible complications, such as corneal damage, blepharitis (eyelid inflammation), dysphagia (difficulty in swallowing), dental caries, and the inability to speak for extended periods of time. Involvement of the exocrine glands of the upper airways may result in persistent dry cough.

(ii) Many other organ systems may be involved, including musculoskeletal (arthritis, myositis), respiratory (interstitial fibrosis), gastrointestinal (dysmotility, dysphagia, involuntary weight loss), genitourinary (interstitial cystitis, renal tubular acidosis), skin (purpura, vasculitis), neurologic (central nervous system disorders, cranial and peripheral neuropathies), mental (cognitive dysfunction, poor memory), and neoplastic (lymphoma). Severe fatigue and malaise are frequently reported. Sjögren’s syndrome may be associated with other autoimmune disorders (for example, rheumatoid arthritis or SLE); usually the clinical features of the associated disorder predominate.

b. Documentation of Sjögren’s syndrome. If you have Sjögren’s syndrome, the medical evidence will generally, but not always, show that your disease satisfies the criteria in the current “Criteria for the Classification of Sjögren’s Syndrome” by the American College of Rheumatology found in the most recent edition of the Primer on the Rheumatic Diseases published by the Arthritis Foundation.

Lots of good stuff on About.com lately. This one goes out to all the caretakers:

Living With Someone Who Has Fibromyalgia or Chronic Fatigue Syndrome

Dan deserves a medal for putting up with me sometimes. Yesterday, he woke me up for church as I had requested, and I was startled and jumped and injured my back. He probably won't want to ever wake me again.

The pile of not-yet-posted articles on my browser is getting HUGE! Here's one particularly worth of note:

Suicide Warnings on Fibromyalgia, Chronic Fatigue Syndrome Drugs

Unfortunately, none of the drugs in this article had these warnings on them back when I took them. And, yes, a couple of them made me suicidal. I guess waiting until a medication has been out a few years does have its advantages.

Another item sitting on my browser for a long time. It explains why it's a bad idea for insurance companies to require patients to try less effective medication prior to covering stronger medication they may have been initially prescribed:

Small measure of relief from constant pain

If I'd had effective pain treatment back when it first began 14 years ago, I doubt I'd be in such intractable agony now. These days, the best I can hope for is to stop it from getting any worse.

Interesting article I got via a fibromyalgia Facebook page. If you've ever had to wear sunglasses indoors during a migraine, this will make sense to you:

Tinted Lenses Relieve Migraine Symptoms: Neurological Proof

When I've got a migraine, I find fluorescent lighting greatly aggravates it. So if I must go someplace like the drug store during one, I wear my sunglasses, and it does seem to help.

This link is part of a huge backlog I have piling up on my browser. There are some good ideas here:

When chronic illness strikes: Tips on talking to family and close friends

Unfortunately, most of us lose at least a couple of friendships, and it is not uncommon to have at least one family member who won't believe we have anything wrong with us no matter what we say or do. While we can't pick who we are related to, we can make new friends even if we are too ill to leave our homes thanks to online support groups. I am grateful to have new friendships in this way as well as friendships that pre-date my illness.

Now we have the "food plate" instead of the "pyramid". I already don't like it:

Food pyramid loses its edge

Here's my gripe with it: dairy is listed separately from protein. But dairy IS a protein! Surely we don't need dairy AND meat at every meal? One cup of Greek yogurt contains 22 grams of protein, more than most meats and plenty for a single meal. I usually have meat/beans/tofu OR dairy at each meal, but not both.

Also, the "grains" section is simplified too much. There's a great deal of difference between Wonder bread and, say, quinoa, but both would qualify as grains. So people will still be having Pop Tarts for breakfast even though, nutritionally, they are not a wise choice. But I guess "whole, minimally processed grains" would be too many words to fit on their little chart.

Good article from But You Don't Look Sick. I can definitely relate:

I'm Still Me...Just Slightly Modified

Sometimes, I wonder what I would be like now if I had never gotten sick. One would hope wisdom would have come with age even if I had stayed healthy, but I'm pretty sure maturity would be no more a factor than it is is now, heh heh.

At last, here is my latest review for But You Don't Look Sick (I've been offline quite a bit lately, in part due to thunderstorms that seem to crop up every time I try to use the computer for more than a couple of minutes). Not quite as good as going on vacation in person, but it will have to do for now:

Book Reivew: "Roadshow: Landscape With Drums: A Concert Tour By Motorcycle" by Neil Peart

Now that it's June already, I'll need to come up with a new article in another week or two. I am considering writing about dealing with brain fog since I have fourteen years of experience on the subject. That is, if I can remember what I wanted to say about it, heh heh.