In the next few months, I’ll be working on a website and blog that covers people with disabilities, specifically for those with rare disorders. The reason I’m waiting to launch it is due to money – my site is up for renewal in the next few months, so I’d like to keep everything in one place, hash out details, make a preview site before launching, and have a domain name everyone can easily find.
Why am I doing this project?
When I first started writing novels, beginning supporters were interested in the gluten-free and dairy-free entries I had on my personal Facebook page. There were several discussions, and over time, I realized that there were limited resources for individuals suffering from rare diseases. This also contributed to myself, who still struggled to find reasons for the migraines, syncope episodes and losing feeling in my entire left side.
The list was endless and grew tiring with each appointment I went to. If I could count how many times I’ve heard the words “morbidly obese”, “type-two diabetes” and “somaform disorder”, I’d have enough money to never work again and publish about twenty-four books comfortably while giving one third to Indiegogo and Kickstarter campaigns. (Seriously, if you ask my closest friends, they’d say the same thing.) However, I’m not the only one who suffers from constant misdiagnoses – all of us do, on some level.
The labels I had before a definitive answer this week included atrial fibrillation, overstressed heart, diabetes, sleep apnea, obesity, somaform disorder, multiple scleroses, pinched nerves…there’s about twenty more, but it’s frustrating to type them and you get the point. Solutions became more ridiculous, surgeries with no hope were presented (but again, unsure if they would solve the issue) and shoving pills seemed to be the only option – one I was not comfortable with.
What Is Your Story?
Everyone should have the tools they need to survive, but if I went to the ER for an emergency for thoracic outlet syndrome (TOS), no one would know what to do. No one should live this way.
For me, it instills an underlying fear. I experienced it when I was seizing so bad my throat tightened up. As my boyfriend tried explaining my medical problem to the nurse, she kept asking if it was a new or reoccurring injury…as I was unable to voice what was happening to me.
You see, my throat tightens as if someone turned on a hose and poured ice cold water down my throat. It’s a mix between drowning and choking at the same time, with no way to tell someone I am in the middle of a fainting episode.
Usually, this happens within a 45 to 90 second window, and there is nothing I can do to stop my body from falling in whatever position I’m in.
You can understand where the underlying fear lies now.
On Monday, I was sent home from my job (where I learned it was my last day today), and spent three hours waiting on a CAT scan when my limb seized. My left arm – from the crook of my neck to the fingers – seized, spasmed, and then turned discolored. Because of the spasms, their first guess was seizures, until they saw the swelling.
They ordered a CAT scan, but admitted they never heard of TOS, nor did they have a protocol to handle it at the local ER. Until it came back clear, they assumed I was in the middle of having a stroke.
The only thing they could do afterwards was give me steroids to breathe, because I had also developed a sinus infection. However, I spent five long days going between episodes, been adjusted three times by the chiropractor, and my limbs turned color at the adjustment one day this week. This is what prompted them to finally give a proper diagnoses – in the middle of an flare-up episode.
And another specialist – but one that they personally recommend. They’re asking around to see who will take my case while keeping them as one of my providers.
This has encompassed the last four years of my medical journey. I have had eight fainting episodes, all caused randomly without rhyme or reason. Most happen at the weirdest times, and when I hyper-extend my arm a certain way that cuts off blood flow to the brain. However, until this week, I had people grasping at straws and shuffling me off to whoever would listen, because I am not a “classic medical textbook case”.
I don’t want this for anyone else. No one should suffer in silence, nor believe they are going insane and making up something that is truly wrong with them.
Why Is This Important To You?
There is not enough research studies or awareness out there for thoracic outlet syndrome, or for any of the rare diseases on NORD. Quite frankly, this is misunderstood whenever someone goes for treatment or a diagnosis. The studies I have read conclude it takes several painful years to get a proper diagnosis and treatment. While this is not acceptable, there are not enough resources for those seeking treatment to gain proper support.
How would you feel if you learned that despite wearing a medical ID bracelet with your condition on there, the doctors, nurses and medical personnel would have no idea how to handle, treat or research this condition? That they never heard of it, and ask YOU what it is?
There added another worry – educating the medical community in the middle of an episode.
Only a handful of individuals in the world have thoracic outlet syndrome, which is usually caused by a traumatic injury or from sports. We haven’t determined if it was because I was born with an extra set of bones (cervical ribs), or if the car accident from ten years ago exacerbated this issue.
If I became frustrated enough to slip into depression, I cannot imagine those in worse places such as I. Just as veterans and those with wide-known disorders have networks and support groups, I feel there should be one for people in my category as well.
What Do You Hope To Achieve?
I hope to give back to the community with this ongoing project and start a forum where those suffering can reach out to others who understand physical, emotional and invisible illnesses.
The weight of being alone becomes crippling with each passing day and support can be the difference between anyone’s ongoing success or failures. It can also clarify to others why you behave a certain way and save relationships before they are damaged beyond repair.
I use the term invisible illnesses because it is not seen as a “physical disability”, but is identified with help from machines during examinations or if exposed over a prolonged period of time. Tons of people suffer from them, but a lot of readers don’t understand how many writers live within these confines.
Out of all the writers I know, at least twenty-five percent of them cannot work within society’s definition of normal terms. Some cannot work out of the home, others have physical limitations, and others just aren’t capable, no matter how hard they try.
Right now, I am drafting what I want the site to look like, but I am enlisting help from those I trust and support this cause. I want this site to be a continuous updated medium where people’s voices are heard while still supporting one another on a platform other than Facebook or social media.
More information will be available as I grow nearer to launching this site, but I look forward to growing this project and thank you in advance for your continued support.0