Since having to stop treatment wit Savella two weeks ago, I have been so incredibly sick I can hardly use words to describe it. My school work has fallen precariously behind, housework has been an absolute joke, and I haven’t even made time to watch most of the TV shows I normally watch (which have piled up on VHS tapes and digital files on my hard drive). Thankfully, I am starting to see a little light in this tunnel and was even able to throw together a school assignment last night before bed that was almost overdue. One more week of this horrible Statistics class and I am DONE with my math credit requirements! I hope everyone reading this is safe from the storm making its way up the Eastern Seaboard today and that all have a good day!
Up again this morning at 5:25 a.m. but not asleep until 11:30 p.m. last night. My FMS already greatly reduces the quality of my sleep, losing actual hours of sleep is to much! This better not be setting a precedence, not a happy camper as it is! 😡
Up an hour and a half early this morning with a panic attack and FMS pain throughout my back. Isabella thinks that since I’m up I may as well be feeding the cat and is practically climbing up my ass to get my attention to the fact that she will expire in precisely 30 seconds if she does not receive nourishment, the joys of having a cat. 😉
OK, I am a 42-year-old SGWM living with family while I study to obtain a degree that (I seriously hope) will allow me to support myself again while accommodating my multiple health issues. I suffer from an aggressive case of Fibromyalgia that robs me of restorative sleep nightly, gives me daily migraines, wide-spread body pain (muscular, joint, and tendon), chronic fatigue, emotional difficulties, and a slew of other pleasant symptoms. I also have a condition known as Multiple Chemical Sensitivity (aka Sick Building Syndrome and Environmental Illness) that makes me hyper-sensitive to all chemicals, whether airborne, ingested, or from dermal contact. Multiple Chemical Sensitivity (MCS) has taken me from being a very social person to a complete recluse who is (most often) afraid to visit the grocery store. The fragrances used in most people’s personal hygiene products, laundry products, household cleaners, cosmetics, lotions and other skin care products, air fresheners, perfume and cologne, sun-block, and pretty much every aspect of ordinary life trigger instant and intense migraine pain the second they hit my olfactory nerve. Most prescription (and many over the counter and holistic) medications give me severe side effects (generally the ones listed in the documentation under the heading “call your doctor immediately”) that can range from completely sleepless nights to the drastic (and permanent, unfortunately) change in vision in my right eye (and that was a CHOLESTEROL medication). Ingestion of preservatives, artificial flavors or colors, and other food additives tend to intensify my existing migraines and have given me symptoms such as heart palpitations, heightened anxiety, and a slew of other wonderful problems.
I started getting sick in May, 2003 at the age of 34 with the migraines, insomnia, and depression/anxiety. For almost two years I was sent to three different Neurologists (one of which was rated Central Florida’s premier Neurological expert on migraine treatment) and the Shands Neurology Clinic at University of Florida in Gainesville. After a Ct Scan, two MRI’s, and MRA, blood work for every deficiency imaginable, recommendations for alternative therapy (Chiropractor, Acupuncturist, and the lot), and enough different medications (all failed) to kill the average horse, none of these doctors could sufficiently reduce or stop the daily migraines. They were intense for the first six months and then I found through massive dietary changes and certain preventative medications that I could get them under some control, but they never stopped. My final Neurologist made the suggestion that my problem may be Fibromyalgia after I suffered a fall in January, 2005 that started to take away my ability to walk by Mid-March, 2005. I had damaged several discs in my spine when I tripped and rolled to the bottom of a 20 foot embankment as I had been running with my dog. The discs as L5 (lower back) pinched a nerve, the results of which took weeks to fully be realized. By the end of March, 2005 I spent a week in the hospital, unable to walk with even forearm crutches and with a slew of other symptoms that were scaring the hell out of me. This is when I got the diagnosis of Fibromyalgia although it would be another four years before MCS would be diagnosed, even though I had been suffering from it since June 2003 (shortly after the migraines had started) without understanding why the smallest amount of fragrance would make me so violently ill. The hospital in Orlando never told me what was wrong with my back, it wasn’t until I was forced to return to Virginia to live with my Mom (I had been out of work for a year by then and simply ran out of people to stay with in Orlando) and was sent to MCV in Richmond to see the Neurologist that my back was given an MRI and EMG and Nerve Conduction Testing. This testing showed multiple bulged discs and the location of the pinched nerve, but neither were severe enough to warrant surgery, the doctors surmised that my condition is exacerbated by my Fibromyalgia and that there was nothing they could do for that. i had already been on nerve pain medication (ironically, what is now approved for treatment of Fibromyalgia) and had experienced severe side effects to it.
I walk fairly well now after having slowly graduated from a year in bed, to using crutches and wheel chairs, to just crutches, to one crutch, to a cane, to a permanent limp. As long as I don’t try to push myself too hard or my Fibromyalgia isn’t actively attacking that nerve (which it does from time to time), I get around fairly well. I still have to use the power scooters at large stores like Wal-Mart or in smaller stores on bad days, but my mobility has improved a great deal as the pinched nerve has slowly healed over the years. I cannot go out into public without wearing a swimmer’s nose-clip to prevent the passing of fragrances over my olfactory nerve. When I find myself near a particularly strong fragrance, it reaches the nerve through my sinuses while mouth-breathing and will close my throat or irritate my lungs if it’s harsh enough. This makes being an active member of society rather difficult and triggers a great deal of emotional anguish for me, but there is nothing that can be done for it short of destroying my sense of smell (which I’ve attempted with complete failure many times over the years and continue to plot regularly).
Life has been a struggle for many years now, but I strive to find the positive each day that I manage to wake-up, even if the only positive I can find is the fact that I managed to wake-up that day. I started my continued education in April, 2009 after more than four years of not being able to do anything beyond watch TV or play on my laptop all day long. I felt that if I was to have all of this time on my hands and unable to do anything with it to support myself, I could at least be a student and work toward something positive with my time. I achieved an associate degree of arts in Information Technology with the University of Phoenix (on-line, of course) in February of this year and received my actual diploma the Saturday before my birthday in March. On March 1st I began the journey that will conclude in my achieving a bachelor degree of science in Information Technology with a concentration in Web Design by the end of 2012; at which time I intend to begin a master’s degree in adult education with the university. When I have completed my education I hope to begin teaching online so that I may work again, doing something I have always loved, and having the flexibility to manage that work with my health problems and the unique symptoms they bring to me.
As you can imagine, I am single. There’s nothing hotter than an over-weight (the Fibromyalgia has packed nearly 70 pounds on me in the years since my fall), unemployed, penniless, gay man living with his mother in the sticks of a very small town! Line-up guys, I’m ready for ya! LOL! My last significant relationship was with a very sweet guy who I just didn’t have the right feelings for. He lived 45 minutes from me and made the drive himself once a week. We would go to the movies, or stay in and watch a DVD, and generally just enjoy the company. After dating for over a year, we completely stopped having sex (and neither of us seemed to miss it), so after several months of this I broke-up with him to allow him to feel free to find the right guy for his life. I honestly feel that as long as I am incapable of taking care of myself (financially), I have no business taking-on someone else’s baggage. Not to mention, I don’t want anyone to feel that they must be responsible for my well-being; I hate the fact that I must rely on my Mom to provide a roof over my head and some food for my survival, but she did at least give birth to me.
OK, I suppose that’s about all anyone would need to know about my life, as it stands today. Naturally, there is much more to me than my health problems and I will be more than happy to share those tidbits of who I am over subsequent posts. I think that this is enough for anyone to read in one sitting; so if I haven’t scared you off with the horror story that is my current life, stay tuned. 🙂