Believe Me, continued. Second Stage Disbelief. I almost died.
I certainly had gotten used to being brushed off and ignored by my doctors: I was still hoping for diagnosis and for docs who believed me.
Well, they believed me all right. I opted for an ostomy. An ostomy for constipation. Wow! And it was the hardest decision I've ever made.
Most everyone in the Ehlers-Danlos community has a story to tell about their medical PTSD. Watching the stories on the Facebook group for Myasthenia Gravis, I’ve realized it’s a rare disease phenomenon, not just us Zebras. If you’ve not experienced the kind of problems I’m talking about, count your self extremely fortunate.
The last 5 years have aged me. You can now see it in my face. Many Ehlers-Danlos patients look way younger than their years and I was no exception. At 64 I could have passed for 55 easily. I have proof – a studio portrait taken for a book blurb in December of 2015. A few years later I had undergone five surgeries in 18 months and thought the death-dying deeds might be the cause of the dramatic change.
Twilight – that time between the clarity of day and the murky darkness of night.
When I got diagnosed with Ehlers-Danlos Syndrome (EDS) at 55, I was told by the doc that it was untreatable and uncureable and to just go home and forget about it. Once so much came online about it, I was able to get further but except for odd surgeries, cysts and hernias, it all seem to just go along without massive problems.
I really am very glad that I discovered these smart crutches. I got them in September as it was getting colder here in Maine. I immediately started looking for a way to tote things around like a cell phone as a purse just wasn't working out - throws off the balance and can bang the crutches.
Medical Impostor Syndrome. Yup, that’s me. I’ve never reached enough success to claim I have the impostor syndrome where one may have “a collection of feelings of inadequacy that persist despite evident success”. But I do have it in a way that’s impacted how I proceed in my medical journey. I have medical impostor syndrome (with kinks).
There are four key factors to impostor sydrome:
Be careful what you wish for!
I've had experience with medical insurance that encompasses most all options. From military to no insurance, from an HMO to a PPO, from the ACA to Medicare. None have been satisfactory but medicare is a major problem for me now. It is not insurance. It is a government-run mess of insane rules and surprises.