Friday, January 18, 2008

Are YOU Bendy Too?

It took me 9 years before I realized how big a role my hypermobility was playing in my health. It was that discovery which finally led to my recent diagnosis of Ehlers-Danlos Syndrome (it's a collagen disorder of several different variations )

The drawing above, the Beighton Score, is what a medical professional will use to rate your "bendiness", tho it's not the be all and end all on the subject.

more on the subject soon...

Wednesday, January 16, 2008


1. Decisions about which body part to wash depend on which doctor you're seeing today, i.e., face/ears for the ENT; feet for the podiatrist; arms for blood tests; etc...
2. Proper use of toiletries can forestall bathing for several days. However, if you live alone, deodorant is a waste of good money.
3. Read labels carefully. Ever notice how much the can of room freshener resembles the can of deodorant?
4. Remember to warn your spouse before kissing if you've just taken your herbal remedies, since your breath now smells like grass.

1. If you can't remember what it is you're cooking in the pot, whatever it is, it can probably use more salt.
2. Do not toss that cold cup of coffee into the dryer or set the iron in the refrigerator to cool off, no matter how good an idea it may seem at the time.
3. When your husband tells you "Don't worry about dinner, just throw some frozen chicken in the oven and forget it", DON'T forget it.
4. When everything INCLUDING the can opener is dirty, it may be time to wash some dishes.
5. It's bad manners to fall asleep at the table, especially in the food.
6. If you're having a bad day, there's nothing better than pizza and quiet.

1. Always place a Post-It Note on the dashboard telling you where you're going. And when you get there, place another on the dashboard that says HOME.
2. Never relieve yourself from a moving vehicle, especially when driving.
3. Always carry an electronic homing device in your car and with you so you can find your car in the parking lot.

1. If you have to vacuum the bed, it's time to change the sheets.
2. If you take the dog for a walk, make sure he brings you back.
3. Nevermind about taking one day at a time. Just stick to one thing at a time.
4. Try to spend at least 45 minutes each morning doing one get-up.
5. Work at learning something new every day, like sitting up, for example...
6. Remember to breathe when napping. It's unnerving to wake up and see vultures staring at you.
7. Learn to understand your "body language":
Joints - "I ache! It's going to rain!"
Stomach - "You're getting me upset!"
Nose - "Oh, oh, I'm getting a cold!"
Head - "Stop it, all of you! I'm getting a migraine!"

The Burden of Proof Rests Heavier on Misunderstood Illnesses.

Here at a time when the FDA is finally approving drugs for the treatment of fibromyalgia (Lyrica being the first so far) the media pipes up with the, "Is It Real?" question again - some outlets more politely than others e.g. the recent New York Times article - I won't even bother to link to the other articles in that vein which have been quite a bit more insulting. Feeding a portion of this latest rash of articles is the fact that Dr. Frederick Wolfe, who had originally "discovered" fibro in the early 90's has now decided it's a psychosomatic illness.

I'm of two minds about the situation. The reality of the condition I don't feel is in question. The fact that doctors allow it to be the final diagnosis and cease looking any deeper I feel is a problem.

Having been diagnosed with fibro and CFS a decade ago, I'm angry it took me 10 years to get the more accurate diagnosis of Ehlers-Danlos. There are a portion of doctors treating Fibromyalgia (and to be fair, CFS) as a wastebasket diagnosis. Can't figure it out? Blood work odd but not overtly dangerous? Fibromyalgia!

Do I believe this collections of symptoms labeled Fibromyalgia exist? Absolutely! Do I believe that once that diagnosis is received it's the end of the diagnostic road. Emphatically NO! There are subsets within both Fibromyalgia and CFS, and until a larger portion of the medical community starts taking a serious look at that effective treatment and true respect of these illnesses are a ways off I fear.

Tuesday, January 15, 2008

ah the frustration. i managed to get locked out of (how many people can do that?) by getting crossovers with my google account and another email. as a relatively computer literate individual i can't believe it took 5 months to straighten that out. some days i really wish computers would quit "simplifying" my life for me [sigh].