Thursday, December 20, 2007

I've had a middle aged moment, and it was nothing - EDS

Those of you who know me personally might be thinking "What is she talking about, she's been having middle aged moments for 5 years now." But I don't mean how my nouns have been flying out of my brain willy nilly, and I don't mean the happy dance my hormones have been having with my serotonin and dopamine.

I don't have to count these things as being caused by middle age, because I can come up with alternative explanations I can choose to believe instead. Lots of cyclical changes in a woman's body impact mood. Stress itself, regardless of age, effects memory's ability to retrieve the exact word one needs at the exact moment.

It could easily, I can say, have been stress that caused me, in the Dr.'s Office, to forget the word for Knee; or at work, the word for Book, or Vacuum, the former being in the middle of a children's talk during Worship, the latter being explained by a pushing motion with one hand simultaneous with a vvvrrrooooooooooo noise until someone guessed vacuum.

But this one can't be blamed on monthly shifts in estrogen or stress-induced mental moments.

I reached into the refrigerator to move the margarine so I could get to the wine, and dislocated a finger. Had to pull it out and everything. Swelling, pain, tendon popping, if not the whole 9 yards, then at least 4.5.

I whined and moaned. It was truly a middle aged moment. Young people don't dislocate fingers reaching for wine.

But then I was reminded of my friend -- Mags, Maggie, Margaret the Incredible -- and how blessed I am to have dislocated one joint this entire decade. When I came out of the closet at Eastern (Baptist) College in 1984, I could count on one hand the students who remained my friend at all, never mind those who were compelled to proselytize or "let you know that I didn't agree with it."

I was honored when Mags and her husband attended my wedding two years ago, doubly honored because of what it took out of her to be able to make the 600 mile trip. She hardly leaves her house, never mind a trip like that, from Virginia to Massachusetts.

See Mags has EDS. People with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The Fancy Medical definition is
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility.
This is a fancy way of saying that her body bends directions it should not and as a consequence her joints frequently fly apart, and her skin is too thin to protect her insides very well, and it's a terrible terrible illness. When she falls down everything comes apart. When she rolls over in bed something can come apart. When she picks up a dinner roll her finger, or elbow can dislocate, when she eats the roll her jaw might dislocate.

I am embarrassed to admit that fifteen-twenty years ago, before she was diagnosed, I dismissively thought she was depressed, or worse, a total woos. I was an uninformed jerk (and not for the last time in my life). I saw her complaining about symptoms of pain that didn't appear to have any cause, laying in bed all the time, and being depressed. And I mentally scoffed. Embarrassing or not, crankycindy will be as honest about herself as she is about hate mongers and bad drivers. I share it because it's a reality, and not uncommon. Remember when we "didn't believe in" things like chemical sensitivity, or gluten sensitivity? Young and judgmental, boy oh boy, sure miss those days. Um hum.

Because of course she was depressed, her body, the encasement for her self, the way she interacted with the world, was a total mess. And it's progressive.

This is her:



80% of people who have EDS don't know it. How 'bout your kids in your congregation? So let your good deed for the day today be to learn about EDS. Because of the internet, we don't need to remain ignorant when people tell us of a set of symptoms, or an ailment, and rarely understood diseases and syndromes are only a couple of links away from awareness.




So I dislocated a finger reaching for the wine. Big Whoop.

1 comment:

Mags said...

Bless you, Cindy for helping spread the word about Ehlers-Danlos Syndrome (EDS).

We with EDS are impacted every moment of our lives and we certainly can benefit from everyone's help.

If everyone got involved this would improve the quality of life for 50K known and countless unknown EDS-affected persons throughout the world.

There is a downloadable Awareness Brochure here: http://www.ednf.org/dmdocuments/eds-brochure-high-res.pdf

This, along with this Sports Participation Poster http://www.ednf.org/images/stories/EDNF_Kids_and_Teens/Sports_Poster.pdf and/or An Educator's / Parent's Guide and/or other materials downloadable here: http://www.ednf.org/index.php?option=com_content&task=view&id=1359&Itemid=88888956 can help to educate yourself, your doctors, your children's schools, your gym and community centers about EDS and how it is diagnosed. (Post every facility, doctor, school, etc. that you give these materials to on www.ednf.org so that others may benefit from these new EDS-aware facilities.)

The only thing "rare" about this disorder is the amount of people who are properly diagnosed within their lifetime – awareness can certainly help change this.

Many blessings to you and your readers and my sincere gratitude for everyone reading through all this and hereby increasing EDS awareness even just this little bit.

Well wishes and joy, Mags.