I suppose I should have believed my doctor, way back then, when he said I shouldn’t be surprised if, later in life, I’d most likely have other autoimmune issues crop up. Truth is, at age 25, I wasn’t thinking about my health, especially the declination of it, 20 years down the road. I was in top athletic shape and had a world to slay. Certainly a family to raise.
Unfortunately, I had no idea of the personal tragedies I was about to face over the next 10 years of my life, and what a mental, spiritual and physical toll it would take on me. Without delving too deeply into all of it, I will say that I was entangled in a web of mental, emotional and physical abuse; the kind that movie makers write about. Sadly, at the same time, my father was diagnosed with brain cancer and at the age of 34, I would no longer have either of the 2 most important men in my life. It was simply unbearable and all while raising four children on my own.
After my father passed away, at the age of 59, I realized I didn’t want any regrets, and decided to try my hand at the Fire Service. After 3 short years I was hired as a Fire Lieutenant in California’s Central Valley. This is where my illness articulated itself as an insidious and formidable foe, only to later develop into a cunning thief.
I was almost going to skip right to Fibromyalgia, however, after a plethora of research, realize I need to touch on my diagnosis of endometriosis. I had been hemorrhaging every month with my cycle and that was just not going to work for me if I wanted to remain in the Fire Service. After being diagnosed with large fibroid tumors; too large for ablation, this led to having a partial hysterectomy, which led to the diagnosis of endometriosis. One in 3 women who are diagnosed with endometriosis are diagnosed with fibromyalgia and chronic fatigue syndrome. One in 5 are later diagnosed with Systemic Lupus, Rheumatoid Arthritis or MS. It’s like a really sick joke and one I would face very shortly after my surgery.
I began having severe joint pain and weakness, followed by muscle pain and weakness. Some other symptoms that would surface included; spinal pain, burning sensations along my spine from cervical to lumbar, tingling in hands, arms, feet and legs, blurred vision, light sensitivity, sleeplessness, sleepiness, brain fog, forgetfulness, feelings of confusion, body aches, skin pain, ringing in ears, temperature sensitivity, skin rashes, dizziness….ugh really! It’s no wonder I’ll add helplessness, hopelessness and depression to the list, and no one (including doctors) could understand, but most of all me; I couldn’t understand. The downward spiral began.
I was terrified and angry! After all my family had survived, after working so hard, now this. It probably wouldn’t have been so bad if I could have been diagnosed with something that would hold weight in the medical community, as well as, in the workforce. You can’t get disability with a diagnosis of fibromyalgia. I had no choice but to continue to work in a profession and among people who had no desire to understand or help me in any way shape or form. It, quite literally, added insult to injury, and I slipped further into darkness and isolation. I kept hanging onto the hope that maybe I would miraculously get better or maybe the medical community would make a discovery or diagnose me with something that was curable. The waiting went on for months and turned into years and I kept fighting and hoping.
I didn’t speak of it much, to anyone, except occasionally. An example would be on a morning of my first day of my 48, and I had taped up a few of my fingers, due to lesions I had while in the middle of a terrible flare. I had been scheduled for an intensive wildland training that morning, and while I road with my Chief he asked what happened to my hands….. I told him that I was having a bad flare and had to cover some open wounds, and without skipping a beat he looked at me with indignant disgust and said, “Don’t you think you better get that figured out?!”
Had he really just made that accusatory question, slash statement? What the hell did he think I had been doing all along? Did he really believe I enjoyed feeling like shit or having to tape up parts of my body to protect myself against the diseases I faced every shift, after being exposed to people who aren’t honest about what diseases they have? Did he think I felt my health was a big joke and that I hadn’t already spent hours upon hours in waiting rooms, doctors offices and laboratories? Or that I hadn’t already spent thousands and thousands of dollars on blood tests, brain scans, CT scans and MRI’s? Are you fucking kidding me?
At this point I had gotten pretty good at tuning out the blatant ignorance that was all around me, although I had feared many wanted me gone, and I was right, all I could continue to do was my best, and that’s what I did. It was impossible not to feel lonely and isolated….what made it worse was that it was around men I had once called brothers, who now seemed more like unrecognizable strangers to me. My diseases had done what abusers do…they isolate their victim until their surroundings are no longer their own. Till all that once was, is no longer, and they win dominance.
Little do my body abusers know, I’m stronger than that. This is not where my story ends. This is just a new chapter in my saga. I have now become a researchaholic and I believe at the core of my being, all that I’ve suffered is connected and I’m determined to figure it out. None of what I’ve endured will be in vain and I will help others. Till next time….
Life may throw a number of curve balls, so study the curve ball!
💚The Crazy Celt