Living with Ehlers Danlose...The Mystery of my life.

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. 

How are you suppose to live?

When you feel like everything you do is wrong. There are things I know I do that are wrong, but even when I try to fix them or right the wrong, be mature and take responsibilities, sometimes that blows up in my face as well.

Its like nothing I do is ever right.

How am I suppose to live if every thing I do is a "fuck up"? I might as well die. :( UGH.

Introduction:

My Name is Jamie Elizabeth Cormier. I am 27 years old from Southern Louisiana; I guess that makes me a "Southern belle," except one problem: I am far from beautiful. Oh, don't get me wrong, I don't have low self-esteem; I am okay to look at, I got a good "head on my shoulders," a fun personality,I am "down to earth," I can be "tom-boy" and "girly-girl" (depends on my mood of the day.) etc, but when you look at me, you will not see a "smoking hot babe" (unless you talk to my boyfriend, but he kind of has to say that,) no, the first thing you will notice is a huge hunchback or the "hole in my neck," scar I have from a trach I use to have; but those are later in my story.

I was born 2 months prematurely at Women and Children's Hospital in Lafayette, LA on May 5, 1991, at 10:36 a.m. I only weighed 3 lbs. 6 oz. and only 16 inches in height. My entire first month was spent naked in NICU with wires and tubes hooked up to me, away from my mommy and daddy; how traumatic for a little infant!

I was able to go home for maybe 2 weeks (if that much) in my second month before landing back in the hospital, throwing up food and not keeping any feedings down; was diagnosed with Pyloric Stenosis (which is A condition in which the opening between the stomach and small intestine thickens) and immediately had stomach surgery (I even still have the scar to prove it). I also got diagnosed with Ehlers Danlose Syndrome around my second - fifth month (not sure exactly when), however, we do not know what type it is due to the fact my parents did not complete the genetic paperwork testing stuff or whatever; to this day I still am pretty clueless about this disorder of my life. In my 8th-10th month, a curve was noticed in my spine and was later diagnosed with Scoliosis.

Despite these diagnoses, my parents insisted that I have "a Normal", typical childhood and for the most part, I did: Sure, I didn't always reach milestones on time, but my parents, especially my mom, never gave up on me; nothing like a determined mother. My parents disciplined me, the same way they disciplined my older brother, they didn't let me use my disability as an excuse to get away with stuff and they also didn't want me to become spoiled; they wanted to keep me humble and "down to earth," however, the rest of the world didn't get the memo and sometimes strangers would spoil me with free cookies at the supermarket, buy me a candy or a snack cake, my favorite memory was at the yambilee festival: I was trying and trying to throw a ball to win a prize, the carney who had only had one arm, sympathized with me, and gave me free throws until I was able to win the prize I wanted; he even signed it "Bear, the one-armed bandit," and I told him when I read that, "you aren't a bandit, you gave me free throws, that's nice...bandits aren't nice. You are Bear, the teddy-bear man." LOL.

 I went to preschool (however during this time, the only children allowed in preschools in public school was early intervention kids who needed "extra attention," )--then later mainstream Elementary, Jr. High, and High school;  learned potty training, lost baby teeth, didn't learn how to ride a bike (only because I think my parents didn't want to traumatize me if i did fall and hurt my back. I was scared, so why push the issue.), my older sibling and I fought as most siblings do--pulling pranks on each other, tattling, etc. I made friends, I got bullied and teased because of my Scoliosis, I was in girl scouts, I went out on weekends. I may have not looked like a "normal" girl, but I had all the same experiences, feelings, emotions, trying to figure out life,etc.

I won't go into all the details of every little aspect of my life. In 2012, I got my "miracle" surgery after going all the way to St Louis, Missouri to meet Dr. Lawrence Lenke (who's practice is now in New York.)  At this point, my Scoliosis was so severe that my ribs had twisted themselves around my spine, my lung capacity was only functioning at 18-22% I had to spend 7.5 months at Shriners Hospital for Children-St Louis for what is called Halo Traction. It is a procedure they do to try to straighten spine before surgeries. I had my first phase of surgery on August 16,2012 and it was over 12 hours long and he had to break 10 of my ribs just to get to my spine. A week later, Even though I had doubled my pulmonary numbers while in Halo Traction at Shriners, and was functioning at somewhere over 34%, I had developed Pneumonia and had to get a trach put in. I kept the trach even after I returned home, and it wasn't removed until February 2013, after I had to go through sleep study and now sleep with a CPAP machine due to symptoms similar to sleep Apnea. My second phase of my surgery was on September 20, 2012; it is one way I remember my cousin's little girl's birthday, because I remember coming up from surgery a few days later, and asked if my cousin had had her baby yet and if everything had gone okay. Even high on drugs, I was always worrying about others. LOL.
I returned to my home state of Louisiana around Mid October, I was able to participate in some Halloween festivities, but not much, because I was still in massive amounts of pain and still on lots of pain medicines. Now, 4 years later, I have resumed college, driving, and being as independent as possible--chasing down my dreams of changing the world for the better for special needs with a degree in Special Education, but that doesn't mean I am definitely gonna be in the classroom; I do still have lots of pain, especially in the cold fronts, rainy weather, etc. All I can really do, is just take one day at a time and try not to really stress about the future, because it makes me depressed. Like they say, One step at a time, one foot in front the other...baby steps. I know that God, my lord and savior is in control and as hard as life is and its tempting to really ask if he is truely there, I have to trust and believe in my catholic religion that I was taught, that he is there, and is guiding me. I just have to be patient, still, and quiet enough to listen..good luck with that quiet thing, when is my mouth never running? LOL.

Anyway, thats somewhat about me..I could write a whole book, actually I did, its just not published yet. Lol.

Anyway, God Bless.
-Jamie