My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling With Psychotic Features ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Self-Harm ~ Bilateral Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ Eczema

Thursday, July 18, 2019

You mean it's not normal?

I remember little things that I didn't understand growing up and until I found out I have EDS (see What Are Ehlers-Danlos syndromes?). For instance, I remember being four and asking my Grandma and Mama why they liked footstools when your knees just bend backward when you prop your feet out and it hurts after a while. I remember them looking at me weird and saying "Knees don't bend backward." I was really confused because I thought that everyone's knees bent backward, but I shrugged it off. 

Mama used to tell me when I was a teenager that my skin was so soft and velvety, yet I got so many stretch marks so easily, that it was like my collagen was made weird. So she'd buy me collagen lotion because we didn't know any better at the time and thought it would fix it. This was about fifteen years before my diagnosis or either of us ever hearing of EDS.

Me at age ten
Me at age ten

When I was in track and field it confused me so much how people could be such great runners, jumpers, throwers, etc. but not be able to sit in the floor, lean forward, and comfortable rest their wrists on the toes. I was also confused why no one else was able to stand, bend over, and put their hands flat on the floor without bending their knees. It's so easy for me, how on Earth could someone be in such good shape and not be able to do something so easy?
Whenever we did the Presidential Fitness Test it was the worst time of the year because it hurt to run, it hurt to try chin-ups, it hurt to sprint, etc. So that always meant I could look forward to non-stop pain for the next couple of weeks or so. I thought it was that way for everyone, but they hid it better, since the doctors kept saying I was normal. It started being so painful to run by the time I was eight that I cried every time we ran, doubled over in pain, embarrassed as I tried my hardest not to cry, and often failed. I thought I must just be wimpier than others because everyone's joints and muscles have to be hurting as well, I just couldn't handle normal pain.

I also thought everyone always hurt all the time, that it was normal. I remember sitting on the black metal front steps of our trailer with Daddy when I was a kid. I remember saying while crying, "Why does it hurt so bad, Daddy? I hurt so bad everywhere, why does it hurt so bad? Please, Daddy, make it go away. If feels like there's knives in my knees, they hurt so bad. Make it stop." I remember a concerned look on his face and shortly after my parents took me to the doctor for the first time for chronic pain. I've been going to the doctor for pain since I was four. Throughout the years, they would do X-rays and they always came back normal, so I was told I was normal, but I just had a super low pain tolerance and basically couldn't handle normal life. I never got anything for my pain until I was eighteen when I was finally prescribed Celebrex (a COX-2 Inhibitor, a type of NSAID). I've not stopped taking Celebrex since then, but I've doubled the dose I started on. Back then Celebrex had no generics, and my doctor spent hours on the phone with the insurance company, and no doctor ever devoted that much time to me as she did.
My dad taught me how to wrap my knees, ankles, and wrists with ACE bandages when I was eleven. That's when I started using Flexall, which totally destroyed any chance of making friends because I smelled like menthol all the time. It didn't help that I often limped, started around age eight, sometimes on one leg, sometimes on the other, and occasionally would cry in class from the pain, especially if it was very cold in the classroom or we just got back from recess or P.E. I think people thought it was weird that I limped on different legs sometimes on the same day, but both legs hurt, sometimes one more than the other.

200 mg Celebrex
200 mg Celebrex

It never occurred to me that I wasn't normal. I thought my joints were normal and everyone else I knew just was extra stiff. I have to admit, when I was finally diagnosed with EDS it explained a lot. I'm learning new things all the time about EDS and it explains more and more things about me. I don't know what I would have done in days before the internet. I know I never would have been diagnosed!

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