Well, where to start? I'm Jessy, and the main reason I start this is to stop giving my friends an earful about my struggles. You may wonder what struggles? Well, be warned, I will just vent along ... feel free to skip parts; I won't be offended.
Another reason is, to provide resources and advocacy for my fellow zebras.
So, a little about me: As I said, I'm Jessy - a German living in the USA.
I'm a licensed critical care paramedic in Germany and a licensed, NREMT certified paramedic in the USA. I have 20+ years of experience in EMS on two continents, ground, flight, long-distance and rural services. I also have many years of teaching experience in my field.
I am diagnosed with Ehlers-Danlos Syndrome (hEDS), among some other related rare co-morbities. I had a lifelong struggle with mysterious symptoms; at one point in childhood, I was even diagnosed with Cystic Fibrosis.
Anyways the EDS suspicion came up in 2012 and was confirmed in 2014 by UCSF.
Ok, so you may think, so what? Many people struggle with chronic medical illnesses. Yep, you are correct. But my struggle isn't as much the physical symptoms; I deal with them in a way that might be the root of my struggle. I am a paramedic! The very same person that responds to a lot of bullshit calls, drug seekers, people who tell you all kinds of crap that makes no sense! Any medic or medical professional who claims they don't every so often roll their eyes when patient stories make no sense, or we think it's lies. We are trained to treat horses, not zebras. I have been a paramedic way longer than I have known I have EDS.
I think I compartmentalized both facts about my life into two separate things. As a paramedic, I would roll my eyes when hearing about my medical story. I would call myself a patient "crazy or full of it." So where does that leave me with the patient side of me??? I think this is a realization I have had lately, and maybe I want to use this blog to explore this further. (Instead of giving my friends an earful).
I started in EMS in the year 2000 in Germany. As I said, I had random medical issues off and on all my life, but never anything that I considered debilitating, but in hindsight, all EDS related. So in 2007, I met and married a US Airman stationed in Germany. I started shopping in the commissary; I started using military US doctors. By January 2010, we had moved to the USA. Within 4 months, I started having increasing medical issues—mainly joint pain and instability. In 2011 I had ankle surgery, and by 2013 I needed to use a wheelchair. I researched and researched and found a trigger for most of my symptoms (as my argument was, I was born with EDS, why am I so much worse in the USA?).
Anyway, I found the triggers in FD&C dyes, avoided them, and returned to my "healthy" life. I got my paramedic license in 2016 and worked in EMS.
I developed all kinds of statements:
- My EDS isn't as bad as it sounds on paper cause I manage it more wisely than most patients and watch my diet.
- I might have EDS, but I'm not disabled.
- I am just fine!
- and so on
I recently realized that I may have lived in some kind of make-believe state for the past several years. Let me share some pertinent factors and possible explanations.
Divorce 2016. I also had gotten my medic license in. the USA and was excited. I worked endless hours. Every so often, I had a POTS/Dysautonomia issue - which I explained as, "well, I didn't stick to my hydration level or diet." I remember times I even fixed it while working with a bag of fluids and continued working.
2018, I took a night shift ... well that didn't work at all as I went into bigeminy and SVTs almost every day. So after 5 months, I had to return to a different shift.
So fast forward this to 2023; I pretty much changed my job or shift/hours every 6-12 months cause I started to have some kind of EDS-related issues.
Two weeks ago, my doctor had a heart-to-heart. He told me he doesn't need to run expensive tests to see if I have low iron explaining fatigue or other apparent EDS-related issues. He says I need to take better care of my body and find a career that I can do with EDS. He said he is surprised my body functioned that long with the way I had been working.
So what do I do???? What I always do. I did find a new job, but I pushed myself in another aspect. I took a warehouse job with 20.000+ steps a day...... After 6 days, my ankle tendons were "shredded," which I probably should have known and probably did but ignored, cause you know, I'm not disabled.
It's not that I ignored the fact that I have EDS; it's always more like I want to be a "normal person" and do the same things other people do.
The time I hiked a mountain and had severe altitude sickness at 13500 ft, to the point of double vision... I think I passed out below the summit and waited for my party to return. I explained it as I was napping .... but was I napping??? I don't know.
Another time I jumped off a 23 ft cliff into the ocean and was bruised like crazy .... also spent the next 3 months at a chiropractor to get my misaligned spine back in order .... who thinks jumping off a 23 ft cliff with loose joints, spinal instability, weak tendons, and ligaments and weakened vessels is a good idea???? But yeah, I didn't wanna be "different"... I mean, I could have just said I'm afraid of heights, but I think I wanted to push myself just to prove myself, for my ego, not for anyone else.
And then there was the time I was skiing and got run over by a snowboarder ... BUT that could have happened to anyone! So tomorrow, I'll be back in Colorado ..... skiing .... with 2 active tenosynovitides..... clearly, I haven't learned from the past yet.
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