I’ve spoken briefly about my medical issues before, but several months have passed, and I have an update. As you may recall, I mentioned being in near constant pain. I also have something called “Fibro Fog” which basically is like brain fog, only it’s also a frequent companion to me. This makes writing difficult, and even gaming - for fun - can be a challenge as I forget what I’m doing, and I don’t always remember when the fog passes.

Anyway, things are worse again. But also better? I’ll try to keep this quick and explain as best I can.

So It Began

For 5 years straight, I’ve had intense pain in the colder months (January to May - roughly). My appendix was removed a few years ago, as that was suspected, but as the pain persisted, my doctor tried several tests…each year…to no avail. The pain was so bad, I could barely work, and we had to hire someone to start covering my job. She eventually left as her business took off, leaving me alone and in charge of the Social Media department again. Then, last August, my health left me unable to sustain our Social Media department, and it was shut down. After that, things took a turn for the worse.

A Turn For The Worse

By November, I still had daily pains, headaches / migraines, and extreme fatigue. I couldn’t really do a thirty minute walk without huffing and puffing. I’m only 180 lbs. And at that time, I may have been at my 169 lbs range. (Go me!) Then, in December, I crashed. I began having fits of paralysis that could last anywhere from fifteen minutes to several hours. If they occurred around 7pm, I wouldn’t be functional again until around noon the next day - if I was lucky.

Doctors were dumbfounded (or just dumb, or insurance is dumb, or all of the above?). It took around five months (April 2024), before they diagnosed me with Fibromyalgia.

Fibromyalgia: a chronic disorder characterized by widespread pain and other symptoms such as fatigue, muscle stiffness, and insomnia (Oxford Languages).

Unable To Breathe

But, that did NOT explain everything. So, I had to keep fighting to have doctors listen to me. Heck, back in January or February, I went to the ER because I wasn’t breathing. I was also paralyzed and unable to communicate at the time. I was disrobed, and lay there as I tried to focus on breathing. Nurses poked me with nine needles, had blood drawn, and a doctor came in to give me a sternum rub. It was not a fun day for me.

A sternum rub is the application of painful stimulas [sic] with the knuckles of closed fist to the center chest of a patient who is not alert and does not respond to verbal stimuli. The sternum rub is the most common painful stimulus practiced in the field by EMTs and paramedics (EMS1).

Not Lupus - But I Wanted To Be A Werewolf

Earlier this same day, I was told I did NOT have Lupus (I read so much on that subject! And I accepted the werewolf reality…which turned out false), and the doctor admitted to not knowing what I had. He said he would give me a recommendation to the Cleveland Clinic. Sadly, he had a medical emergency shortly after, and was unable to write the recommendation, or notes on my visit, for quite some time.

Fibromyalgia “Diagnosed”

Cleveland Clinic was the place where Fibromyalgia came up, but only as a possibility, and that happened back in April 2024. Local doctors took it as law, and because of that, no neurologist would see me. Tired of waiting, I brought up that I didn’t breath and my hands shook a lot to my primary care physician. Finally, in August 2024, I had a sleep study scheduled and neurology finally agreed to see me… in October 2024.

Mild Sleep Apnea Diagnosed

And now, as of September, I have a mild sleep apnea diagnosis and a CPAP machine. The first two days were game changers! I’d been having maybe two combined hours of activity a day before that (the other hours were spent sleeping or paralyzed). I felt elated. And that brings us to today. The machine is no longer giving me miracle levels of results. I’m still struggling to think clearly, the pain is back, and the paralysis is steadily worsening. Naps are spontaneous and irresistible. I can only hope neurology will listen this time.

Wish Me Luck - Looking To The Future

Sadly, this is the update I have. There’s still more going on, and my doctor knows it. Even my Physical Therapists know it. Heck, I went to a writing conference in a wheelchair, so they know it too. Looking to the future, I can only hope Neurology will listen to me, I just can’t bring up fibromyalgia or they’ll probably cancel everything again. Wish me luck! 

Until next time, may your adventures be many and your inspiration be endless!