Before Lupron, I was a different person. I worked full-time as an executive assistant. I hiked, biked, went dancing, did all my housework, loved to cook, read and write poetry and short stories. I enjoyed life, in other words. Before Lupron, I was organized, out-going, engaging in events and life. Watch commercials for popular fibromyalgia medicine and it describes me how I am now, just replace fibro with Lupron. I can’t engage in any of the activities I used to love. My husband took early retirement to enjoy life with me and I’ve been too sick to travel or even just take a walk in the park.
The initial shock (there is no other word for it) my body was thrown into after the first Lupron shot was horrid! I had such violent hot flashes that I would end up in the E.R. with what I was told was a “panic attack” and that I was okay, and all tests were normal! What about the fact that I felt like I was literally dying, with every side effect listed in the literature (which is staggering) for Lupron and could only manage to concentrate well enough to read about a month after I took that last shot? The first time I sat in front of a computer and read The Lupron Victims Network, I knew I had made a tragic mistake and my heart sank. Since that day, I have become an avid researcher, trying to find some way to get my life back, chasing my tail around the information highway to be disappointed time after time.
The next six months were spent trying to muster enough energy to buy groceries, have a life, enjoy my life. One of the most alarming things was the fact that I couldn’t think: I couldn’t put a sentence together in my head. My husband would ask me a question and my answer would be “I don’t know” and I really didn’t know, even simple everyday things! Such poverty of thought put me into a depression I could not explain to myself, let alone to doctors. The anxiety was horrible.
I felt a little better when my body starting making estrogen again, but then came the pain, especially in my legs. Xanax and ibuprofen were my only friends, and I took lots of them, to take the edge off the pain. I was nervous to take other medications, as I was scared of medicines in a way that was unhealthy. Every medicine I tried either made me feel worse or I had strange, sensitive reactions to it, something that still happens today.
All this happened in the fall of 1997, one day after my 41st birthday. I will be 60 this year and have been sick THAT long. There were periods of time when I managed fairly well with a handful of pills, massage and other gentle modalities. The popular water exercise everyone recommends–water aerobics–provided little to no relief. After a year and a half, I gave it up and hurt LESS.
Then, I had a surprise. I was 46 and almost fainted at home one day. I went to the doctor and found out that I was pregnant for the first time! We were shocked and elated until I went into withdrawal from muscle relaxers, tranquilizers, and other pills that I was taking to help manage pain, anxiety, and all the other symptoms. Five days later, I miscarried my baby at 3 months pregnant. We were traumatized. I blamed the doctor, Lupron and big pharma.
I found out later I had a prolapsed uterus from taking Lupron, and two years after the miscarriage, I had a hysterectomy. I kept my ovaries thinking I would be thrown back into Lupron hell if I shocked my body again. Since then, I have had more problems from my teeth, to my back, to my thyroid, to dry eyes; there is always something going on in the saga of my unwellness. And, my official diagnosis is fibromyalgia! You guessed it by now, when everything is wrong, let’s not insult her by calling her a hypochondriac. Although they might as well, since it is just as hard to be taken seriously and respected, and since I HAVE a diagnosis, why look for anything else, unless of course it will make money for everyone.
My faith in the medical establishment is extremely crippled. I am surprised if a doctor believes me when I tell him Lupron made me permanently ill. There have been a few, and I mean FEW– and I have seen numerous doctors of various specialties, sometimes traveling hundreds of miles, to no avail.
I have to accept that this is now my life. I have neuro/endocrine/immune system dysregulation brought on by a poison that I willingly agreed to, having no idea what would happen as a result. Of this I am sure. Period. Nothing you can say, show me, or otherwise do will convince me that I am wrong, misled, or uninformed. I am living the sadness, and sometimes overwhelming life of chronic illness imposed upon me by the poison that is Lupron.