Tuesday, June 20, 2017

My (possible) life with EDS.

At this point in my life, i'm about 90% certain I am a Zebra.. that means I was born with a collagen disorder called EDS (Ehlers-Danlos Syndrome). Most of the time it's genetic, but every now and then it will manifest itself spontaneously. From the research i've done over the past.. over 2 years now (recommended by a great friend who was recently DIAGNOSED as hEDS).. I'm pretty sure I am hEDS or clEDS. Or even an overlap of the two, which is fairly common.

MY journey..
Some things I look back on my life and see because I am just now realizing how pertinent they are to having these problems with my body.

Like falling out of the same tree, the same spot.. all the time. You'd think I would learn how to balance or climb the tree differently? This, I'm sure, had to do with something called proprioception. Not knowing truly where your body is in a certain space and time. So when I climbed the tree and stood up, I thought I was standing in the right spot far enough away from the edge of the branch, when in reality, gravity took effect, and I fell.. every single time. Flat on my back. This is why also, I'm sure, I would run into things with my bike (causing scrapes and bumps and bruises, that never healed very well, causing the scars I have today).
This same concept of proprioception effects me today (and will always), thinking my bare foot is far enough away from the door, but still getting slammed into, bumping into tables and chairs, cutting my finger with the steak knife while i'm cutting, paper cuts.. you get the drift.

Pains in my body that I thought were normal..
and then pains in my body that made me stop being as active as i wanted to be. Like the year I was a sophomore in high school and I didn't know running on the track was bad for my body.. The sports trainer had to wrap my knee for track meets and after that year (i had chondromalacia patella), I was told I could not run track anymore because of the toll it was taking on my body.
Luckily they still let me be a cheerleader (I think probably because of my height, my strength, and my dedication.. they needed me on the team).  My flexibility helped with this as well, though my hips were hurting.. I was a human pretzel, twisting my legs behind my head and bending my fingers backwards.

I have always been a singer and dancer as well. I have always had a very broad range vocally, and now I feel like it's because of my flexible vocal chords, they stretch more than normal ones do. And my dancing, I can point my toes like a ballerina (without training them, stretching them.. anything) but my toes and ankles aren't strong enough to hold that position with the weight of my body.

When I was 21 (first year we were married) i started needing glasses.. have had worsening myopia and astigmatism ever since.

Even when I was pregnant with my daughters, my first child put my body through the wringer. I was on bedrest and low sodium diet for the last 6 weeks of my pregnancy (diagnosed with PIH, gained 45 lbs), which only ended up being a month because my kidneys were failing and she and I were going to die (yes, literally cease to exist) if they hadn't induced me at 37 weeks after catching it on an NST. My other two daughters were also quick births, never making it past 38 weeks of pregnancy. My second child was only a 4.5 hour labor, no time for meds, 1 push and she popped out. By the third child, I figured out that I really needed to be careful during pregnancy, and we planned her birth because of my labor history.
Needless to say, this all took quite a toll on my body. I was on a z-pack with pregnant with #2, and Amoxicillin with pregnant with #3. By the third one, I started feeling the effects of (what i thought was) arthritis in my hands.

More recently (Dec 2012) I was diagnosed with OA (osteoarthritis) because I went to the dr complaining of inflammation in the joints all over my body and being tired all the time. They diagnosed me without doing any tests.. come to find out now (June 2017) there is no arthritis in my body.. it's the chronic joint pain i deal with every day and sleep apnea that comes with the collagen disorder EDS.
I also went to see the same dr's office back in Dec 2015 because of recurring lower back/upper rectal pain that was/is inconstant but hurts so bad when it happens that I have tears running down my face and i just want to scream. They told me I was constipated and didn't offer any ideas of how to take care of or lessen the discomfort. So screw them.
From then on, i didn't see a Dr for anything. I have basically taken it upon myself to take care of my own sickness and daily discomfort with the help of my family and friends.

I am finally stepping into a future where I am taking care of myself, putting my health on the front burner, and saying "hey, these feelings and pains are not ok. i need to find out why it's happening and how to take care of myself". I have started seeing a DO (doctor of osteopathy) to narrow down what's NOT wrong with me in order to finally figure out what IS wrong with me.

I was diagnosed in 2014 with GAD (generalized anxiety disorder) and was told about an herbal remedy that would help level out my stress levels and hormones.. been using it ever since and it's been amazing.
I went to get my hearing checked this year as well, and I do have hearing loss, just as I thought. I can't hear as clearly, and sometimes have to ask people to repeat what they're saying.

I'm only 34 years old at this point, mind you.

We have done blood tests and hand x-rays recently.. all my bloodwork came back normal and so did my x-rays.
So now i know:
i do NOT have ANY type of arthritis, no gout, no lupus, my Vit D is normal, as is my thyroid.

The fact that I'm hypermobile is actually on paperwork now (omgosh it makes me want to laugh and cry all at once.. so good to see someone take me seriously).. and I have a referral to a genetics counselor to test for the EDS.

Oh my gosh, my life is feeling better all the time now that i'm making my own health a priority.

I have chronic pain, so my Dr says we are going to treat me as if i have Fibromyalgia for now, and continue using my braces/wraps/motility devices for my hypermobile joints and pains.
But i'm SO glad that, with the help of my two best friends (my husband, Brian, and Beth, my friend since high school).. I'm finally on my way to getting answers!

Praise God for this journey!
So glad for the people around me.


I'm not done filling in the parts of my life that have been effected by this, but i'm glad i'm getting somewhere. More to come. ;)

1 comment:

  1. Amazing job writing this out. I'm proud of you for going back to the doctor after having those bad experiences with the medical community. I like to think of it like searching for the right cheesecake... You are gonna get some bad ones that either make you sick to your stomach or tastes like paper, but don't stop looking. Just throw that shit out, pay the bill, and look for a cheesecake that is more highly regarded. Once you find the one that works for you, the satisfaction will have been worth the effort and disappointments. Because everything is relatable to cheesecake. :-) Love you, babes. You've got this.

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