Iām a few days late, but Iāll just share the first three prompts at once.
My journey:
I was first told about EDS around ten years ago. At that time, I suffered from chronic pain and fatigue. I remember one PCP appointment where I told my doctor that I think I might have arthritis, and I was told that because I was only 25, I was too young.
Throughout my childhood, I suffered from frequent sprains and looking back, I showed so many of the signs. One of my uncles called me Gumby because of my flexibility. I apparently went to PT as a baby because I couldnāt hold myself up. (I didnāt find out about that until a few months ago). Sadly, neither of my parents remember what I was diagnosed with at the time, and that was almost 35 years ago. All my father would tell me is that our family has loose ligaments. I also had severe dental crowding and still suffer from the effects. I also have the high, narrow pallet, and my current dentist has commented on it and is not surprised that I have EDS. And then there is my eyesight. When I was 12 or 13, I was told that my cornea is thinning and that I will likely go blind in that eye. The last two optometrist appointments have commented on this. And turns out I carry the gene for BCS.
I wasnāt able to get a formal diagnosis until last August after fighting Kaiser Permenente when they refused to even entertain the possibility of EDS or HSD. I had to go to the official EDS website and find a provider in my area. She diagnosed me on August 5, 2025.
Then and now:
Before my diagnosis, I was angry and depressed all the time, especially when I slowly started losing my ability to do the things I enjoy.
Now, after almost a year, I am SLOWLY getting some of that back. I have gone to PT, started OT, have a 504 at work for accommodations, use the body braid, wrap joints when needed, and take frequent breaks. Some days are harder than others, but I at least have answers for why I am in so much pain.
One thing that might surprise you:
I used to go scuba diving, and being in the water is when I feel at my physical best.
What helps me the most:
Listening to my bodyās limitations on any given day. I have to take frequent breaks, especially if I am being active.
The body braid (which I will link below) is immensely helpful to remind me of normal range of motion. The downside is that the Velcro will pop off as I move about my day.
Promote better posture and movement with the Body Braid System. This adjustable posture strap enhances your mind-body connection for healthy
Walk and Roll Wednesday:
Typically, I walk to get the majority of my exercise. My husband is a newly certified personal trainer, and Iām planning on starting some weight lifting over the summer.
The downside to walking longer distances is that I am often out of commission the next day. But I enjoy it. Below is my average over the last few days.
A good day looks like:
A day that I am able to do everything that is on my to do list. Due to the pain and fatigue, Iām not always able to do everything I want. Also a day that I am able to enjoy a long walk with my chocolate lab, Ruth. Or just any day that my pain is manageable.
