A Piece of Paper from Complete Strangers Just Validated My Entire Life
*Why are you so lazy?
*Why can't you keep a job?
*Well then can't you find a job that's light duty?
*How can you sleep so much?
*How did you gain so much weight?
*Don't you care enough about yourself to exercise?
*What do you mean it hurts every day?
*When are you going to sleep like a normal person?
* "insomnia? Sounds like more of a personal preference than a disorder."
*How can you let your husband take on so much work and not feel guilty?
*How can you let your new house go to hell like this?
* Why can't you keep up with laundry?
*Why do you always cancel plans?
*Are you sure you're not a hypochondriac?
* You must need attention or something?
*Fibromyalgia? Oh come on. That's a made up diagnosis for when doctors are stumped. It's not real. In fact, they told me I had that too a while back but somehow I work 2 jobs and run 5ks. So...
what's your excuse?
It’s been 15 years of questions and comments like this. Questions that no matter how hard I tried to explain it to them, their answer always trumped mine in their heads. So eventually I just stoped trying. It was easier to "own" what was becoming my sad, sorry, pathetic failure of a life.😔
So what actually happened 15 years ago? Well, I was fresh out of high school, with no idea what I wanted to do, so I took a year off to decide. At 19 I finally realized what I was talented at, graphic design. So I enrolled at the local technical college and set forth on my journey. But it was short lived. Because a month before my first semester started, I was socked one day, seemingly out of nowhere, with a mystery disease that completely turned my life upside down. And while this story may be a long read, it doesn't compare to how long the journey has been in real life.
It was like a 24/7 hangover, yet I wasn’t drinking. I felt like my muscles and brain were so dehydrated and dried up, I would often describe it to the doctors that my muscles feel like they went from a nice hydrated slice of filet mignon, and have suddenly petrified into a beef jerky-like state. I also had another worrysome symptom, I couldn’t stop the feeling of spiders crawling all over the base of my skull and the top of my head. 🕷Any time I would move my neck, I would hear (and feel) this gritty-like sand crunching in between my joints. It was so freaky! So freaky that I begged my mom to sleep in my room because I was scared I was going to die. Imagine...a 19 year old girl needing her "mommy" to sleep in her room for weeks.
I was not yet accustomed to the dizziness and disorientation, so the first two years of my college life I could barely drive straight to get there. I am absolutely amazed that I did not kill anyone or myself on the drive to school. My jaw and neck were locked up. I cannot explain the depth of the pain, but it radiated to my inner ears and behind my eyeballs. Eventually my entire upper body was a locked up mess. My right eye and eyebrow went completely numb. Every part of my body I touched felt like a fresh bruise, yet no indication of one in sight.
But nothing ever compares to my shoulders. It feels EXACTLY like a brain freeze does. But not limited to just the brain. Like the little veins and arteries inside of you are constricted or something and blood can’t pass through them without causing searing pain. Only it’s spread far and wide. Imagine it running all throughout your shoulders and neck, back, skull, eyes, and jaw. You’re just waiting for that 10 seconds to be up, but unlike a brain freeze, THIS.NEVER.GOES.AWAY. It increases and decreases in intensity but never. once. does. it. ever. stop. burning.🔥🔥🔥
Photo Credit: Healthiculture.com
I was sleeping 16-18 hours a day no problem. I had to force myself to sleep because it was the only time I didn’t have to feel this. My boyfriend at the time was certain I was cheating on him, but surprise visit after surprise pop up visit, there I was, in my bed, just as I had assured him I was. 🛌
With such a lack of activity from the culmination of symptoms, I put on 80lbs in six months no problem. I didn’t even know that was humanly possible, but I proved my assumption wrong. 😕
Negative for West Nile. Negative for Lyme. Negative for Lupus, MS, Meniere's Disease. Everything negative. Specialist after Specialist. More and more offensive referrals to a psychologist. Lost hope. Tens of thousands of my parent's hard earned dollars shelled out to physicians. Social life out the door as I succumbed to a reclusive lifestyle. I watched so many friends disappear, and I cannot blame them for a second. I've canceled so many plans, always bailing the last minute (though I knew on the day I MADE the plans I wasn't going to make it), I couldn't bring myself to explain what I was going through anymore. People don't understand what they can't see. I could only explain it so many times, and by the end of my explaination, there it was. The look...
The look of "OK im trying to pretend I have sympathy for you right now but I totally think this is some bizarre excuse to not have to do anything for the rest of your life but couch surf." I hated the undeniable doubt I could see in their eyes. I so badly wanted to ask them, "Have I ever lied to you about anything in the past?.... Ok, and even if the answer is somehow 'yes’, let me ask you this, was it a lie to most likely get me out of trouble? Maybe I’ve fibbed about my plans for the day, as to not hurt your feelings by telling you that I just don’t feel like going. Or maybe I’ve lied about your pet cat, claiming it’s adorable (when all I really see is a big, unfriendly ball of allergens). But have I ever told you that my dads the CEO of Nestle? That I used to live next door to Screech from Saved by the Bell? That I had a 35 ACT score? No. I haven’t. I’ve only ever lied if it was to buy time to get out of serious trouble, or to prevent hurting someone’s feelings. So that’s why it mentally destroyed me when my own friends and family decided I am simply a hypochondriac exaggerating common, every day aches and pains and gave up on me. 😢
Most of them eventually resorted to making wise cracks about my failure to thrive in life. I learned to just laugh along. (Defending myself was a waste of precious oxygen.) I had to just OWN being a "lazy waste of space with no ambition" because that was the title I was basically given by so many.
At the end of the day all of the pain in the world would never hurt quite like the remarks did. Remarks from the people I love and idolize the very most. But I get it. Because it’s stressful, and kind of annoying, to see someone who used to be perfectly fine, active, and ambitious, make all of these claims about their health yet no test result or diagnosis to prove anything. And I think people were actually getting "jealous", that I seemingly had all of this free time and no adult responsibilities. They think my life is watching the Bachelor over a box of Fiddle Faddle while nonchalantly scrolling Facebook on commercial breaks. And you know what? to a point, some of it is! Because what the heck else can someone hurting do until they heal?
But 9 times out of 10, it’s usually jamming a cell phone, remote control, or any other nearby inanimate object into my neck to put pressure on the trigger points as hard as I can. With a hot sack of rice on my shoulders waiting for 4 ibuprofen to kick in. 🤦♀️💊
Eventually I found SOME answers, a TMJD specialist diagnosed me with TMJD, which would explain the extreme facial and neck pain, but the pain management branch of their office told me they think with all of my symptoms that this was more than just the TMJ. Dr. G said "Ever hear of something called Fibromyalgia?" I told him "actually yes, I saw a segment on dateline about it, it's like a debilitating chronic headache disease right?" He said "Well kind of, but it causes pain in all sorts of places not just the head." After running a few diagnostic tests he told me that he truly felt I needed to accept the idea that I likely have Fibromyalgia with my TMJD which often run hand in hand.
I left the office that day completely overwhelmed. And after putting in a solid 9 months of effort with physical therapy 2x a week and 24/7 jaw splint therapy, Cymbalta treatment, and ZERO improvements, I said "I'm done." There was only one thing left to try...
Could I start drinking and drugging myself into an oblivion? To the point where even if I felt completely dazed and numb, at least I could recognize it as the effect of the substances... At least then I would know it WAS EXTERNAL factors making me feel messed up and not my very OWN BODY doing it to me! I needed to mask this monotony. 💊🥃🍻
So that's what I did. I went on a 3 year bender from age 20-23. At this point I very much WANTED to OD from opiates or blackout from Grey Goose and never wake up. Because I was sick of life. Sick of seeing others succeed while I watched on the sidelines. Sick of explaining a disease that didn't even have as little as an ICD code at the time. Sick of being told it was all in my head. Sick of Google-ing things like "what is the best way to commit suicide without it hurting" or "would God forgive you if have no other option but to commit suicide?"
I know it sounds kind of silly to be relying on my fate from a search engine, but the truth was, I didn't actually WANT to die, I felt like I HAD TO (if that makes any sense). When it gets to the point of crying every day, and then because of the crying you get a massive 3 day headache, there is just no point to living anymore. That's truly adding insult to injury. But I kept telling myself "just get through ONE more day! What if you took your life the day before an amazing medication (that actually worked) was released, or even better, a CURE! I knew it was a far reach, but if it kept me alive, I'd keep trying to have faith. And that faith finally lead me to something incredible....
You see, there is a FINALLY a blood test for Fibromyalgia!!!
It’s called the FM/a® Test and it’s a simple blood test created by EpicGenetics. After applying for the test and being approved to proceed, EpicGenetics will mail you a testing kit with instructions. It was super easy to have my 2 vials of blood drawn and mailed out overnight. This test is exceptionally accurate. So acurate that the sensitivity for the FM/a® Test is approaching 99%. Within 10 days, I recieved a piece of paper from complete strangers that just validated my entire life. 💜
That paper told me that I have tested positive for Fibromyalgia! And it’s not a mental disorder or a syndrome. It’s not a brain signal “misfire” resulting in the "sensation" of overactive nerves. It’s a disease. A disease of the body’s immune system (the white blood cells in particular). The test has the ability to detect cellular and protein abnormalities that are unique to Fibromyalgia alone. These abnormalities cause pain, fatigue, insomnia, brain fog, joint aches, migranes, among many many other "fun" symptoms. 😒
I am so glad to FINALLY have answers and stop blowing thousands of my family’s money on doctors every year to get to the bottom of it all! 💸 But even more promising, is that because I tested positive, I am invited to participate in a clinical trial that holds immense promise!
EpicGenetics has discovered valid reason to believe that a vaccine for Tuberculosis has the potential to change the lives of millions. It is called the BCG vaccine. (The Tokyo strain is specific) The vaccine will not be used to prevent any disease, but rather be used as a treatment to attempt to reverse the biology of Fibromyalgia. 1 to 2 injections over the course of 2-3 years are expected to eliminate the symptoms of the disease! As sited below from EpicGenetics:
"While BCG, or Bacillus Calmette-Guerin, has been used as a TB vaccine since the 1920s. Current studies show promise for BCG’s ability to potentially treat both type 1 diabetes and multiple sclerosis by enhancing the immune system—a process known as immunotherapy. It’s this same process that holds promise for fibromyalgia suffers as an effective direct treatment. EpicGenetics believes BCG will “retrain” stem cells, so they stop producing abnormal white blood cells and start producing normal ones, potentially eliminating fibromyalgia symptoms. Now, those who suffer from Fibromyalgia, have access to not only a diagnosis via the FM/a Test, but the opportunity to volunteer for the free, FDA approved clinical trial. Taking the FM/a Test is the first step. Apply today at FMTest.com. #fibromyalgia #pain #fatigue #fibro #fibrowarriors"
My favorite part of all of this is that EpicGenetics is not a drug company. This is not just another big pharma company looking to keep us sick and profit from our diseases. EpicGenetics, Inc. is a privately held biomedical company based in Los Angeles, California.
So this has been the most promising 3 months of my entire life. 😁 I now officially have the positive result in my hand. I have the info to participate in the clinical trial. And now all I have to do is wait for the announcement that trial dates are set, and I can buy a plane ticket to Boston and begin trial treatment at Mass General Hospital!!! 🛫🏥
I have been praying for this day for too many years to count. To know that it's so close I can almost grab it is beyond exciting.
November is a month dedicated to giving "thanks". So today I want to thank Dr. Bruce Gillis and the researchers involved with this discovery. I also want to thank EpicGenetics and their loving, hospitable staff who went above and beyond to help me get tested and receive the most important and validating results of my life. 💖
Lastly I want to thank my husband Kevin. November 5th marked seven years of marriage together and a whole lot of patience on his behalf. Though sometimes he’s understandably frustrated with my disease, never once did that man imply I was making things up to get a free ride through life. He’s seen me at my worst, but knows what I can be capable of at my best. And If I get my functioning body and mind back, my goal is to repay him, our young daughter Bayleigh, and my parents back in a way that significantly impacts their lives. It’s the LEAST I could do.
Happy Thanksgiving to all of my fellow Fibro Warriors. There is hope...and for once, it’s actually in sight. Keep holding on. 💜
-Courtney Shouldice, 33
Johnson Creek, Wi