Living with EDS..the mystery of my life. (April 2017)

I have always had Ehlers Danlose Syndrome, EDS, but it has always been a mystery to me. One reason of this, being that my parents decided to focus on the “bigger problem,” which was my severe Scoliosis/Kyphosis. 

I am not mad about this, and how were they to know that my life would spiral out of control. I thought this back surgery would solve everything. And it did… Temporarily; probably because I tried to resume my usual activities and didn’t take into account there was 2 tons of metal in my back. 

By summer 2013, I was completely off my Spasm and Pain meds, only taking heart medication and occasional low blood pressure medication, tums for stomach problems, and potassium supplement. I was back to driving and doing my own thing; everything was going great…until late August 2013. 

It all started with a usual younger cousin birthday party. It was late summer in Louisiana, and humidity was terrible, and the party was outside and it was a “fun jump waterslide,” AKA “inflatable water slide.” The list I got from my doctor of my can and can’t do, said nothing of “fun jumps” or “inflatables,” but it had said “never” to trampolines. I should’ve thought of fun jumps/inflatables as “trampolines” but no, instead I rushed home to get my swimsuit and hopped on. Halfway up, about 2 steps from the top, I slip off the steps of the ladder and cling to the rope/clutch thing they have to help if you slip. I can’t get my footing. Meanwhile, I got little kids behind me asking “are you okay? Can you get up?” and I am just thinking “DONT ASK STUPID QUESTIONS, JUST GET HELP!” Thankfully the dad of these cousins, was a doctor, and knew how to help me up (where to grab and etc.), he helps me the rest of the way up, and I got to slide down, but the damage was done and I was sore. 

In October, when I went for follow up visit, there was a small hair-line fracture in one of the rods; don’t know how I got it: he said it could’ve happened from just rubbing it too roughly as it was a hard spot to fuse during surgery and he wasn’t really concerned about it. (Update: It still remains the same, the fracture has not grown or progressed and no need for further surgeries.)

Fast Forward to January 2014, I had just moved out into my own apartment with my beagle, Mya. I was hosting my first “sleepover” with Mom, my cousin Alyssa, and my friend Amanda. While Mom and Alyssa were there, I went walk Mya. I was distracted, talking with Alyssa, and Mya had a retractable leash so I thought she was okay. I was wrong; something caught her attention and she tugged the leash hard and took off, making me fall and drop the leash. I couldn’t move, I couldn’t get up, and Alyssa asks “You okay, Jamie?”  …”Alyssa, don’t ask questions. Either go get mom or catch Mya.” I ended up in the E.R., no broken rods, but I had blunt force trauma to my chest, and a few broken ribs. 

Time passed and I recovered, lost my school funding and had to move back to my parents. Fast Forward to Labor Day 2015, I was at my boyfriend’s house, laying around, watching movies with him; I sit up to turn over or get up or something, I move the wrong way and pull a muscle and probably “tweak” that same problematic rib again.

Ever since then, my energy is crap, I lay around all day, not by choice, and pain is chronic most days. A lot of the days, I need mom to drive, or if I go to the store, I need the hover rounds. I honestly don’t think it’s the rods from my Scoliosis surgery, because like I said summer 2013, I was doing great. With EDS, patients don’t recover quickly. So maybe that’s my problem or my body is degenerating. I don’t know. It’s all a mystery. I hate being a puzzle. 

All this pain and stuff, it makes me worry a lot about my future…if I can get pregnant or have biological kids, will it mess up my body and worsen my chronic pain, how will I function at a job when it takes all my energy to just get through a day at home, The future is scary. Uncertainty is scary. Life is Scary, but all I can do is just “keep on”. With God my lord and savior at the helm, I know my life will be okay. 

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