So the saying goes, you have to start somewhere.
So I’ll start at the beginning: of the end of my old life and the start of my thus far seven year life of fighting with Fibro and fighting, with Fibro.
I was 37 in October of 2011. I owned my own Consulting Business, was a Principle Consultant for a reputable New York City Consulting Firm, the Board Chair of an Educational Advisory Committee and a straight A student. It was that October that the mysterious aching in my knees began. I’d always been healthy. No surgeries, no diseases, no anything. So when the strange aches began, I saw the Doctor. We ran the bloodwork, got an Xray and nothing. In November, my elbows joined the pain game. The pain was bearable, but annoying; especially given the Doctor couldn’t tell me why.
I continued my crazy, hectic schedule of school, work, Consulting and parenting three kids. After all, I was just coming into the top of my game. I was making well over six figures, had job offers knocking on my door, created a name for myself and was building my career.
I just never saw it coming.
In December my Husband accompanied me on a drive from Massachusetts to New York City; we’d decided to drive down, attend my meetings and drive back. We had just hit the Mass border, on our return trip, when the pain in both knees hit me like a sledge hammer. Razor blades cut through them so hard and fast, I couldn’t breathe. I took “labor” breaths until we were able to reach a restaurant where I could stretch my legs and be out of the sitting position. Now, I was starting to panic. The annoying pain that I’d been intermittently experiencing, for the past two months, had just hit a pain level I’d never known, out of nowhere and the Doctor still had no guess.
I had no more episodes like that through the Holidays and additional Doctor visits and bloodwork still revealed nothing. I absently put it behind me as we came into Spring,
March 12th of 2012 has now come to be the last day of my life…..or at least the life I knew and was building upon. It started the same as any other day. We had chores to do, baseball/softball games to watch the kids play and I was hurriedly trying to finish cleaning the bathroom. It was then that the knee razor blades hit me, full force again and brought me to my knees. The pain was so severe I couldn’t stand, couldn’t walk.
A trip to the ER showed nothing and they discharged me with a “knee sprain” and instructions to ice it. Ice triggered a severe bout of Raynaud’s, then worsened to Chillblain’s. Emergency Doctor appointments led to instructions to watch for gangrene and the searing red blisters on my toes burst and began to climb my calf. I spent close to three months unable to walk, with my Husband carrying me up our stairs. Pain and exhaustion, like I’d never felt, spread through my body, leaving me weak and desperate. I started to miss work, skip my College classes, the housework sat undone. And so it began; an endless stream of Doctors and Specialists as we wound through more and more serious hypotheses: Multiple Sclerosis, Lou Gehrigs, Cancer……the cycles of tests and waiting were making me lose my mind. We arrived at Lupus in the hands of a Rheumatologist three months later and my first prescription: Plaquenil. I fought against taking it; taking any drugs, as my Colleagues warned me about it being poison, but as weeks turned to months and the pain persisted, I finally swallowed that first pill. Lupus became Rheumatoid Arthritis, RA became Fibro and Chronic Fatigue, one pill turned to ten, two specialists became five and slowly my life unraveled.
By Summer, I dropped my College classes after falling too far behind and work, though supportive, was pushing me to function at levels I should have been able to function at. As time went, I became more tired, the pain spread and as we went from Doctor to Doctor, we found no better answers for what had happened, than for how to control it. And in November of 2012, too tired, weak, sick and swallowed by pain, I resigned from my NYC Consulting Firm.
In those subsequent years, my life as I knew it disappeared. Colleagues dropped off, friends stopped asking how I was (people tire of the truth) , family accused me of faking and our financial situation changed so drastically that we were struggling to stay afloat.
“Life” became sitting here wrapped in my favorite sweater throw on the couch; a bittersweet place of both comfort and Hell. It is here that I have consumed every piece of media known to man, watched every show (both good and bad), cried and thrown things, riled myself to fight another day, lost all hope to live, found that hope again and watched my life play away from the sidelines.
I live a daily battle of fighting with Fibro and fighting, with Fibro. And from one day to the next that battle resigns itself.