Hiding in the Open

Painted lady hiding her face You get used to not talking about health problems when folks either don’t want to hear it or if they don’t believe you. Medical PTSD is real and many with lifelong chronic issues know exactly what I’m referring to. I no longer hide in the open. Is it too late? I’m definitely tired of it all. I hate baring my soul about this type of issue – it’s all about money now. Few realize how little we’ve managed to live on, now how little our retirement provides. I don’t want to announce we’re poor but we are. We get help with our drugs but are not miserably poor enough for more. And we have our pride. We’ve managed til now. Usually by simply doing without. I refuse to do without any longer. I refuse to be confined to my house. I refuse to withdraw from life.

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EDS, My Old Friend, Meet MG

Delia, March 2021The Myasthenia Gravis has finally just disabled me. I’ve had issues for decades but this last decade has been hard. Now that I know I have MG, I also am aware that I’ve had it for at least 5 years and probably more. So instead of EDS driving my issues, it is obvious that the MG is ascendant.

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She died.

It's really tempting to do the Ding Dong, the Witch is dead bit here. But I'm simply not that angry. My mother died today at 101. Honoring your parents is a choice just as emotional and physical abuse is also a choice. My emotions are mixed but I'm left with sadness because she never apologized, almost never told me she loved me and criticized me until the end of our…

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Part 3 of Medical PTSD – EDS & MG

I have read so many horror tales in the Ehlers Danlos community. I attribute this problem to several factors. We spend so much time seeking diagnosis from multiple specialities. So many of us have medical PTSD - we are so used to not being believed. We are so complicated and rarely present the same as others with EDS since there are so many varieties. We really are zebras! New varieties…

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Aging and EDS

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.

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The Twilight of Diagnosis

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.

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