Most people know I'm sick, but the vast majority of those people don't know what the hell is wrong with me. If you pay attention to my Facebook news feed, you see some things pop up from time to time about Ehlers-Danlos Syndrome, or EDS.
I was diagnosed with EDS several months ago, after fighting a year to get the diagnosis so I could get vital medication covered by my insurance company.
If you Google EDS, you'll probably get a brief overview of the condition. The main symptom people associate with EDS is joints that dislocate more easily than regular ones. They dislocate easily because our bodies don't produce enough collagen, so our connective tissue is loose. It's so loose that it doesn't hold in our joints. This, though not life-threatening, is very painful.
Once people get that answer, they don't usually look beyond it to see what else the disease involves. Unfortunately, there's so much more to it, much of which is life-threatening.
One of the biggest problems for me is my gastrointestinal system. Everything in your body that has collagen in it can be affected by EDS, and my GI system is almost nonfunctional. My stomach is completely paralyzed. Most people's stomachs work to push food on to the rest of their bodies. Mine quit on me a couple of years ago. I found this out by doing a gastric emptying test. While most people with some paralysis in their stomach can still empty out about half of their stomach contents, I was only emptying one percent. My doctor said that one percent wasn't even due to my stomach working a little bit but to gravity.
So in January, I underwent my third surgery in three years and had an implant placed into my abdomen. I call him Chuck. Chuck is supposed to force my stomach, through electronic means, to empty. It's like a pacemaker for your stomach. It jumpstarts it. Only this implant has to keep shocking my stomach to get it to continue to work. It can sometimes be very painful. I get pain from my stomach all the way up my left shoulder (the implant is in my left side). The only thing that relieves this intense pain is lying on my stomach. That's hard to do when you're watching two toddlers!
If this doesn't end up working (and it hasn't been working very well), my next step is a feeding tube. Even with the implant, I'm still only emptying out about 20 percent of my stomach contents. The rest, I throw up. So every day, I vomit several times a day.
The EDS affects your vascular system, as well. There are six types of EDS, and I have Type III, which is hypermobility EDS. But I still have characteristics of the vascular type, which I've never been tested for because I can't afford a geneticist on top of a neurologist, cardiologist, GP, pain management doctor and others who have to step in periodically, like an orthopedic surgeon. I have to see no fewer than four doctors a month. If I don't keep a close eye on my heart, I could get in trouble.
I also deal with swelling from blood pooling in my feet and hands, as my heart doesn't pump blood efficiently. Usually when this happens, I'm even more fatigued than usual and can't keep up with even the simplest things, like walking around my house or being awake or doing chores.
Being a mother is difficult. Being a wife is difficult. My whole life has changed.
What brought this on was reading this story: 18-year old girl faces rare connective tissue disorder
This girl goes through a lot more than I do, even though she has the same disease and the same type of EDS that I do. I have anywhere from three to 10 dislocations a day. Many people, like Jodie, can suffer up to 20. Or even more. Five of her organs have failed. So far, mine are hanging on, though they're not working like normal people's. She is really an inspiration. Read the story.
My wish in posting this is not to get sympathy, but for others to gain some understanding. I would love it if doctors studied this disease more. My doctors were clueless about it, which is what took me so long to get a diagnosis and the help I needed. I don't want others to have to go through that in the future. I know too many people for whom it took 10 times as long as it did me to get a diagnosis.
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