Welcome! My name is Jess and I’m a 37-year old from Long Island, New York. My battle with chronic illness has been lifelong, although I didn’t realize a lot of it at the time. A lot of the things I had I brushed off as things everyone had, or was told by doctors were just things all teenagers experience.
It began with OCD when I was just around 7 years old. When I was 11, I started having stomach problems that was diagnosed as IBS due to lack of any other diagnosis. The crippling anxiety began pretty young, and the depression started in middle school. High school was a challenge for me, and there were a lot of random symptoms of unknown conditions. I was always exhausted, and never had anywhere near the energy of my peers. I would stay up late and wake up late, but it was brushed off by my doctors. I was told for years it was just something all teenagers experienced. When I entered my 20s, depression was what my doctors blamed.
I always had a lot of chronic pain, but I always thought it was normal for anyone. At 19, I was seeing a chiropractor and physical therapist for my chronic neck and back pain, which was just made worse because I didn’t have a diagnosis, just an MRI which showed disc herniations in my neck, which I assumed were from my retail job at the time.
During my 20s, I continued the pattern of deep fatigue and no energy, along with going to sleep late and waking up late in the day when I wasn’t working or in classes. A bunch of little things popped up along the way, things that weren’t connecting to any one condition, but that I now think were likely autoimmune disease.
In the spring of 2012, my first symptoms of POTS appeared. I was working out with a personal trainer and I had a sudden inability to do any aerobic or cardio exercise. I would turn as white as a sheet, get extremely dizzy, feel like I was going to pass out and/or throw up, get cold sweats, and extremely dehydrated. I went to a cardiologist who performed a stress test, told me it was fine, and sent me on my way. No other major symptoms presented themselves, so I just stopped going to the personal trainer. In July of 2013, I became extremely dizzy. It started happening every other day or so, and progressed into constantly. I went to doctor after doctor who told me everything was normal. The first neurologist diagnosed me with migraines, I was diagnosed with Chronic Fatigue Syndrome, and in the spring of 2014, the rheumatologist diagnosed me with fibromyalgia.
July 2013 was when it all started to snowball. I had to quit my job in the summer of 2014 after working through it as long as I could. I just couldn’t work anymore with the debilitating brain fog (stuttering and slurring my words on the phone with clients is not very professional), the fatigue had gotten too intense, the migraines were starting to happen more frequently, and I was dizzy 24/7. Finally in November of 2014, after my rheumatologist asked me to ask my cardiologist to order a Tilt Table Test, I was diagnosed with POTS. Enter the snowball of diagnoses. To this day, there’s over 50. Hypermobility Spectrum Disorder/Hypermobile Ehlers Danlos Syndrome, Small Fiber Neuropathy, autoimmune disease, PCOS, and more. It feels like every month there’s a new diagnosis. One thing I learned about having a lot of these conditions: When you have one, you likely have others. One causes another which causes another, which leads to more than I can even try to remember. It’s overwhelming to say the least.
And the purpose of this blog? I have a few. I started the Instagram account several years ago, but started posting more consistently recently. It’s important to me to raise awareness, be an advocate, show others they’re not alone, and create a community with other Spoonies who get it. Who get the pain, the ridiculousness of the whole situation we’ve been thrown into, who get the loneliness, who get the struggle. Together we can maybe laugh, maybe cry, and definitely raise awareness for all of these horrible conditions that afflict millions of us worldwide.
