I am starting this blog for myself. It’s cheaper than therapy and I don’t have to put on my make-up, do my hair or even get dressed to come and write. I’ve alienated so many people by the things I’ve posted on Facebook about my health, and about my feelings about my health…. I decided maybe a blog would be a better outlet. If perhaps someone finds something here that they can relate to, or something they can laugh at or otherwise find interesting, so be it. But this time and space is ultimately, for me.
A little about myself….I am 57 years old (in 12 days I will be 58) and I’m married to a wonderful man. We’ve been together over 30 years. Long before the Pain Monster came and interrupted our lives. When we first started out, we were both still pretty young and pretty wild. We partied hard, loved passionately, and enjoyed life together as often as we could.
I had health issues before I met my husband. I had been diagnosed with endometriosis and had struggled for years with agonizing pain, treated with Depo-provera and still had problems from that. But eventually, it settled down to manageable levels of pain and I just tried to forget about it.
Hubby drove a truck cross-country, he hauled furniture for a living, so sometimes he would be gone for weeks at a time. I lived in our small apartment in a very small town that had probably less than 100 people in it. Yet it had five bars and lots of party people. We were within walking distance to most of the bars. And we frequented them almost daily when he was home, and I frequented them daily when he was not home. I would not say we were “alcoholics” but our drinking was really getting out of control and it was pretty much all we lived for at that time. We were young and stupid. I was coming out of a bad marriage at that time and hubby liked to imbibe during his days off, if for no other reason than he had nothing better to do.
Once in awhile I would get bored sitting around in the apartment hubby & I shared, and so I would take a trip with him. This was frowned upon by the trucking company he worked for, but he got me clearance to ride along, so I packed a bag once in awhile and headed out on the open road in a rickety old Mack truck with my honey.
One time, we took a long trip down to Florida, where I contracted a terrible flu bug that really laid me out. I had a high fever, and was sicker than a dog for several days. Unfortunately there was nothing to do but continue on the trip until the trucking company said he could head home. I rested as much as possible but was incredibly miserable. We had been to North Carolina and Chicago on that same trip before I got ill.
I should mention that I was taking anti-thyroid treatment for my Graves hyperthyroidism at the time of the trip….but never considered the ultimately life-changing bad timing of that trip until I returned home three weeks later, with terrible spasming in my back and pain all over my body. Little did I realize but the doctor had sent me a letter in the mail (that I did not see until three weeks later when we returned from the trip) that I should immediately stop taking the anti-thyroid medication. I believe that my continued use of the medication in addition to the extreme case of the flu altered my life forever. I should also mention that I did call the doctor’s office to report my extreme spasming symptoms and the receptionist did not equate the symptoms with my continued use of the anti-thyroid meds and told me to take Tylenol.
Once we returned home, after seeing the letter, I immediately quit taking the anti-thyroid meds, yet my spasming did not stop. Previous to the trip I had been given radioactive iodine to dissolve my thyroid gland which is a standard treatment used for Graves disease. I did not worry too much about it and at that point in my life, figured “easy peazy”….swallow a radioactive pill, thyroid problem all gone, continue on with my life…. little did I know what I was in for.
In the days that followed, beginning the day we returned to our little apartment, I continued to experience extreme spasming in my back, neck and shoulders. At first we just assumed that it was due to the long trip and my severe case of the flu, coupled with the three weeks of being on anti-thyroid drugs that I should not have been taking for that length of time. Eventually, I called a doctor and made an appointment….which began a 30 year trek of trying to find answers, cures, relief, validation, understanding, and compassion.
To make a very long, painful story shorter….it took me two years of seeking help before I finally found a doctor who figured the mystery of my life out. He came to my bedside in the hospital and said to me “I think I know what you have. It’s called Fibromyalgia”. I will never forget the sense of relief and validation I felt at that moment. After two years of being patronized, shunned, being called a liar to my face, told I was drug-seeking, told I was making it up, told I was looking for attention, told I was bored and depressed…..someone finally recognized what it was that was making my entire body feel like a gigantic black and blue bruise, 24 hours a day. I could have jumped for joy. Until I learned that there was no cure, only drug treatment available.
During those first two years, since I became extremely depressed due to no one being able to figure out what was wrong with me, and putting the cart before the horse and saying I was having pain because I was depressed….they put me in psych wards to try and medicate me to the point of shutting up about my physical pain, basically. I would spend three weeks in a house of horrors, making ceramic ashtrays and walking around in a drug-induced haze…then be released only to find that my pain was still there and I was still yet undiagnosed….a mystery to the myriad of doctors. I lived in a halfway house (for ex-mental patients) for several months before I ended up in the hospital again with severe pain, and that’s when they finally got it right.
FIBROMYALGIA. It was a blessing and a curse. The blessing was that now we knew what I had. The curse was that now we knew what I had. At that point in time (back around early 1980’s), very little was known about fibromyalgia. They were just beginning to recognize that it may be a valid syndrome (they called it “syndrome” rather than “disease” back then). With a tremendous stroke of luck, I was referred to a rheumatologist at the U of I College of Medicine by the name of Dr. Alfonse Masi, a world-renowned research doctor who specialized in arthritis and fibromyalgia. This gentle, kind man, from the moment we first met, became my champion. He not only believed me when I told him about my pain, but he was sympathetic, compassionate, and tried his hardest to offer tips of how to manage the pain. His genuine care and compassion nearly brought me to my knees after all the crap I endured from countless arrogant moron doctors who treated me so badly. I was so grateful to finally have a doctor who understood me. I saw him as a grateful patient for nearly 25 years until he retired from seeing patients. Although he was never able to truly offer me anything to cure my pain, his kindness will never be forgotten.
We never did determine if the overuse of the anti-thyroid meds, or the bad case of the flu contributed to the development of my fibromyalgia, but I believe they may have. That made three separate, specific diagnoses of autoimmune diseases that I had contracted in less than 5 years. To be continued….