If you can’t bend your thumb back to touch your wrist, congratulations. Seriously, it’s a parlor trick not worth having, and worse, it is a symptom of Ehlers-Danlos Syndrome.
Same with knees that bend backwards, or being able to touch the floor with both palms on the ground, or bringing your hands to the namaste position behind your back. I can do all that and more. But I can’t wear high heels, or ice skate or shoot a gun. No matter how often or how severely I fall, my amazing elastic ankles never break or sprain. As a kid, I was the number one gym class zero, being unable to climb ropes or hold myself up to work on the rings, and I was hopeless at volleyball. To my mother’s despair I turned out every single pair of shoes long before I actually out grew them.
I could go on but you get that I’m going somewhere with this self-diagnosis: Ehlers-Danlos syndrome, a rare disorder of the connective tissue. Besides explaining a number of minor failures that afffected my childhood (because at that age, nobody likes to be different), this epiphany is helping me to know myself and more importantly, to forgive myself for a life full of physical, emotional, and even dental ailments that plague me to this day. I bruise easily and I heal badly. I drop everything. My dental situation borders on tragic.
“The problems resulting from a body built with defective collagen are widespread and variable. Persons with EDS Hypermobility often exhibit symptoms of dysautonomia, a dysfunction of the autonomic nervous system, which regulates unconscious organ function including heart rate, blood pressure, temperature, respiration and digestion. Chronic pain, sleep disorders and fatigue are common in persons with EDS Hypermobility...Structural abnormalities of the gastrointestinal track are also common, resulting in a variety of conditions including Irritable Bowel Syndrome. Chronic recurrent headaches and eyestrain are also common, as a result of abnormal intracranial pressure and enlargement of the dura, a membrane of fluid surrounding the brain and spinal column. Patients frequently suffer from allergies and sensitivities.” https://www.healthrising.org/blog/2016/07/01/chronic-fatigue-fibromyalgia-ehlers-danlos-syndrome-diagnosis/
What about the fibromyalgia? So many symptoms overlap, it seems to me that fibromyalgia itself is most likely a symptom of the EDS, or at the very least, a prominent comorbidity, which explains why I feel I’ve had fibromyalgia for many years prior to the 2012 diagnosis. Back to childhood, in fact. Those weren’t growing pains!
Having had this revelation you may ask how it affects my current course of treatment. Well, I had the opportunity to put that question to my neurologist, endocrinologist, orthopedist, and rheumatologist. All agreed it was a fact worth knowing, but it would not change a thing. And the source of all this? Genetic, possibly from the paternal side. Predestined, you might say. Maybe that little bit of knowledge would have resulted in kinder treatment during my growing years. Who knows?
I’m okay with that, really. Because when I resolved the chicken-and-egg issue and realized the EDS was the source of so much, if not all of my health problems, I felt a lot better about myself. I only wish I could tell my mother I wasn’t turning out those shoes because I was too lazy to walk the right way.
And now because you’ve been so patient listening to my endless health problems, here is one of my crazy-ass recipes to try:
Dill Pickle Soup, My Way
This is my recipe, inspired by the recipe created by Cathy Pollak for NoblePig.com.
1 stick of butter, divided
1 bunch green onions, sliced thin, white and light green parts only (about 3/4 cup)
2 stalks celery, chopped (about 1/2 cup)
3 carrots, chopped (about 1 1/2 cups)
1 small clove garlic, minced
kosher salt, white pepper
2 large Russet potatoes, peeled and cubed (about 1 3/4 pounds)
1 - 49 1/2 oz. can Swanson Natural Chicken Broth
3 large dill pickles, chopped (about 1 generous cup) - purchase a large jar of dill pickles, as you will also be using most of the pickle juice; I use Batampte, found in the refrigerator section. Also, I like the pickles chopped fine, but you may like them not-so-fine.
1 cup sour cream
1 cup all-purpose flour
1/4 cup water
2 cups dill pickle juice
1 1/2 teaspoons Old Bay seasoning
1/2 teaspoon white pepper
1/4 teaspoon cayenne pepper
In a large pot, melt half of the stick of butter over medium high heat. Add the green onions, celery, carrots, and garlic clove. Season with a small amount of salt and white pepper to taste. Lower the heat to medium and sauté the vegetables for 10 to 15 minutes, until the onions are softened.
Add the potatoes, the remaining butter, and the chicken broth. Bring to a boil and cook until the potatoes are tender, about 20 minutes. Do not overcook the potatoes. Add the pickles and continue to boil for 10 more minutes. Reduce the heat to medium.
Combine the sour cream, flour, and water, and then add 1 cup of the boiling soup liquid, and whisk together until smooth. Gradually add this to the soup, whisking well after each addition. Stir in the pickle juice, the Old Bay, white pepper and cayenne, then cook for another 5 minutes. The pickle juice is pretty salty on it's own, so don't add any more salt until you taste the finished soup. I like salty foods, and did not need to add any more at the end.
