When My Health Issues Landed Me In Court

Several months ago, before I got pregnant, I found myself sitting in the examination room of a spine doctor.

I really, really, really, did not want to be there.

The doctor was taking a really, really, really, long time to come in and examine me, and there was a mirror in front of me... which kept me entertained for the nearly two hours I waited, by taking selfies while wearing what I can only equate to a blue paper towel.

Have you ever sat in a blue paper towel for two hours?

Then don't judge me.

Because it's really boring.

Did I mention that I was bored?

Well I was, so naturally I was sending all the photos to my hubby, who was possibly also bored at work, because he told me to send him a sexy one.

Since I was convinced that the doctor would walk in right at that moment (and you all know my luck), I resorted instead to sending him my “serious selfie” look, which I think was trying to be sexy, but mostly just looked serial-killerish, and was about as much as I could manage while wearing a blue paper towel.

It was scratchy.

But anyway, mostly I just wanted to get out of there because I was terrified of what the doctor might tell me.

I was scared that he would tell me that my body is failing me.

When I was 25(ish) and I was diagnosed with my genetic disorder, I wasn’t sure what to expect. The rarity of the disorder meant that I was given a diagnosis, a website address for the National Rare Disease Organization, and absolutely no insights as to what I should do to manage my condition other than “see a cardiologist immediately.”

So I did. And I was also diagnosed with a heart condition. Then I saw a pulmonologist and I was diagnosed with COPD (which just feels really unfair since I've never smoked in my life). Next, a gastroenterologist told me that my digestive system was damaged, and a DEXA scan revealed that I had osteopenia in my bones. A multitude of doctors confirmed my low muscle tone and extremely abnormal range of motion, and every orthopedic doctor I saw basically said “you are really fucked up and good luck with all of that.”

The list went on, and on, and with each doctor, another issue would be added to my Jenga Tower of a medical file. Then I would be shown the exit door with no treatment options in mind, because "you have a rare disorder and we don't know how to treat that."

Although one doctor did bring her team of medical students into the room, point to me, and exclaim, "she has what those circus people have who can bend themselves to fit into a box!"

Eventually, I just kind of stopped going to the doctor, because if they couldn’t help me, why waste my time?

Things began to snowball and I got to a point where I was nearly couch-ridden, with a two-year-old who had the same diagnosis, and a husband who although abusive, I did rely on heavily at times (which was all kinds of super amazing fun, since relying on him for anything was a joke, and just goes to show how sick I got at one point).

It was also another large factor into why I never left him.

At the advice of my doctor, I filed for disability since despite my controlling ex, the prospect of me ever going back to work was looking less and less feasible, and I needed to prepare for the worst.

But, not willing to give up completely, in the interest of my child and myself, I began to research ways to make us healthier: enter the very strict diet that we are on. And in many ways, I did get better. The scar tissue in my digestive system faded away, my cardiac issues seemed to resolve, and my bone density scans stabilized. Pain continued to radiate through much of my body, but I was in so much emotional pain from the abuse, that ignoring the physical pain was easy.

Not long after, ex left and my entire life crashed down around me. Then in quick succession, my social security disability case went to court, and I lost.

I then learned a valuable lesson about sucking it up when things get tough, and doing what you need to do to get by. I had to set my health aside and move on, because I didn’t have a choice. As nearly any mother can attest, I would have happily walked myself right into the grave if it was what my kids needed in order to survive. And no amount of physical pain could even come close to the pain I felt when I watched my children go hungry.

So I got myself moving, because I couldn't afford not to.

Yet as I kept searching for full-time employment, it became clear that my health was going to consistently prevent me from being able to perform almost any job on a full-time basis. So in a final hurrah, I took to writing as a means to support my family; I could do it from my couch, on my own schedule, when my health allowed.

Yet as most freelancers can attest, it's not the most consistent way to pay the bills, but it was the best that I could do at the time.

I wasn't proud that my health was preventing me from being able to provide better for my family, but when you added in my very real single parenting status and two special needs children, no one looked at my health as the reason why my income was so low.

I was already the girl whose husband left, I didn't want to also be the sick one.

Moving ahead, several years later, just as The Guy entered my life, I got a letter in a mail letting me know that I had a court date in two weeks for social security. Confused, I called my disability attorney, and asked him why I had court for a case I had lost.

“Eden,” he said. “The judge ruled in error. She misinterpreted many of your medical files because she lacked understanding in your rare disorder, and she illegally discounted many of your records. I appealed the decision years ago; it just took the case this long to make it through the system. The appeals council overturned her denial, and you have court to have your case heard again.”

WTF.

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Stay Tuned For Part 2