Life just hasn’t turned out the way I thought it would. I freely admit I lived my life fast and hard, burning the candle at both ends until, unfortunately, I was 26. In that time I managed to get a BA and an MBA, have two completely different careers, and live and travel all over the world. I never knew why I attacked life like I had limited time…perhaps I knew. At 26 after coming home from an amazing year in Australia, while I completed that last courses of my masters an inguinal hernia appeared. It took the doctors a while to find it (which I know to be normal now, but was pretty appalled at the time) but I finally saw the right doctor and there it was, plain as day.
So, I had surgery to fix it, you know, like you do. The recovery was excruciating and after several weeks with no improvement, I went back to my doctor, who took one look at my incision and informed me I was infected and rejecting the mesh he had placed in my abdomen. Another surgery was required to remove it. Again, I went in, again I came out, again, my condition worsened. I had this terrible sensation of tiny needles constantly poking a very sensitive area (look up inguinal). It also felt like it was on fire most of the time. I was completely disabled by this pain. Even on meds like morphine and Oxycontin all I could do was lay in bed, curled around an ice pack trying not to scream.
In the following year I learned all about the evils of insurance and our medical system. In a final gamble for my life I went ahead with an off label (meaning insurance won’t pay for it) treatment, placing a spinal stimulator peripherally (in my abdomen). It was a success, for certain values of success. I was NOT pain free, instead it confused the pain signals enough that I could function, but only function, not really live. That surgery also had a few complications, the wires attempted to leave my body, twice, which can be awkward. This required two more surgeries to correct. So, doing the math on that year I had the two hernia surgeries, the trial surgery for the implant, the implant surgery (6 hours that I was awake for) and two revisions for the wires, that is a total of 6 surgeries, in a year for someone who had been a healthy active 26 year old.
During that time my body just deteriorated, I started having major seizures, I hadn’t had any issues since I was a child. I was hospitalized multiple times, but my EEGs were always inconclusive. They gave me meds anyway and if you have never had them, antiseizure meds are made to suppress brain activity, talk about trying to function through a fog. I also had these wild flushes that came out of no where, felt like a major sunburn, covered random parts of my body, were miserable, and went away just as randomly. Also a mystery to the medical community. They did a brain scan and said that my brain had several lesions and looked like classic MS, they just needed a spinal tap to confirm. The test was negative, the doctor informed me of the results, shrugged, and pretty much informed me I wasn’t his problem anymore. He was one of many. Like so many others, I was bounced from specialist to specialist, shrugged off, dismissed, and, of course, informed that it was all in my head.
Through all of this I was struggling stubbornly to keep my job. I’m a project manager for a major medical device company and I gotta tell you I LOVE my job. I learned sooooo much, about our devices, about the industry, about the dealing with the FDA, about successfully herding people to a given goal, and of course, about myself. I could work there for the rest of my life and still not learn everything I wanted to know. Sadly, my body made this a terrible struggle. I have been with them for nearly six years and during that time I have been able to work for a full year straight through ONCE. The reality is that I was (perhaps am) stuck in a cycle. I would put all of my energy into working, taking care of myself in all of my off hours, getting lots of rest, using all the usual tricks (ice, heat, creams, tens unit, etc). Still, no matter what I did my body would start to deteriorate, my pain would increase, and eventually either the pain or a major antibiotic resistant infection would force me out on leave. I would rest, do everything right, get better and go back to work, only to repeat the cycle. And I’m a stubborn one, I fought like hell, ignored the pain, even ignored some major seizures, until my roommate caught me, literally and figuratively. She called my parents, and thus, I have not been at work since January.
In addition to everything else my back has been a problem. I have pain in my back and then that awful nerve pain and weakness down the backs of my legs. I can’t have an MRI because of the implant, so I have had CTs and x-rays. I had a CT about a year and a half ago and it found a lot of degeneration and some other issues. I’ve had SI and Facet injections that helped short term, then they took some x-rays this year and the findings were, well, three pages long and full of words that meant nothing to me. We are still trying to sort out how this can be addressed.
So life has not turned out how I thought it would. In fact, I don’t think this ever crossed my worried mind. While I can’t work I have turned to one of my great loves–writing. Ultimately I would like to write a book that will be helpful to someone with chronic illness and those who love them. I have learned a lot over the last seven years, made some pretty disastrous mistakes, and gained a lot of insight. Chronic is an very hard path to walk and society has a lot of misconceptions. If I make just one person’s life a little better then I’ll be happy as a clam. All the while I am looking to improve my writing and find the topics that resonate the most with other readers. My writing will vacillate between life as I now know it and the life I once had. The difference between the two is something I still haven’t reconciled and the understanding the dichotomy is intrinsic to understanding my struggle.
Post by post I offer you an inside look of a different kind of “before and after” picture. I hope that you will join me in both the laughter and the tears.
Thank you for reading!