My EDS Challenge Day 13- Medical Appts in Life with Ehlers Danlos

  • May 13, 2021, 7:06 p.m.
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I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 13 of the challenge: Medical Appts

This is what it looks like, to have on average 3 medical appts per week and work a 30 hour a week job. I have no idea how I did it for that many years. You HAVE to be organized. my folders are organized by doctor and then by specialty. But I am still not organized enough. I need to pull all the test results off the internet and make sure the physical copies I do have are scanned. Its a continual work in progress and never ending. My advice to anyone is to make sure you type out a timeline of every appt youve gone to as well as treatments/suppliments/diets/meds you have tried. Make sure a new dr or PT has access to the document before the appointment. It will save you tons of time… if they bother to read it.

Research, file organization, and deciding what tests to have next or which medical appts to book next is a full time job. Not to mention budgeting the physical energy to get ready for, be in the car to get to the appt, fill out the same paperwork youve filled out 47 other times, wait for the dr , and then go into a job interview like situation. I feel a lot of times i am begging and pleading for help every time. But showing emotion invites potential to be told its psychosomatic and subsequently gaslit, so you have to remain calm even if its a bad pain day and you want to break down. Its not always the pain that keeps me from being able to work a full time job. Allthough its that too, because its unpredictable how I am going to feel on any givin day. But my full time job is managing this disease. Theres no time for actual “living” or “fun” or “social life”… that is a thing of the past, for the “before times”…Its how am i going to get out of this pain? I was lucky enough to have insurance that covered everything for years, so most have the added frustration of managing deductibles, copays, ins paperwork, etc.

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