After I came back from Barbados and working for the last 10 weeks straight, 7 days a week, I finally got a week off. I slept for the first 3 days which didn't help my recently disturbed relationship with my wife at the time, understandably. Things went well the rest of the week and we got into our normal routine. Then it came time to go back to work. During the next 7 days at work I became sick and got sicker as the 7 days went on. On my next week off I went to our family doctor of 20 years. At first he thought I had chicken pox due to all the bumps on my back, but the tests came back negatively. He ran full blood tests from there. In 2 days he still had no answers to what I was sick from. Due to being out of the country recently he referred me to an infectious disease specialist. She took a full bio from both me and my wife. She also took a full report of everything I did from the time I left home till I arrived back home. When it was time to go back to work the next week she wrote me out a note to be absent for the week giving me 2 weeks to recover or at least time for all of us to figure out what was going on.
The symptoms I was experiencing were unbelievable in range. I had bumps everywhere now, I had sporadic and sometimes severe muscle pains shooting up and down my legs and arms. My short term memory was non-existent. I couldn't remember anything from the day before anymore. Couldn't remember what I had for lunch or dinner the day before. Couldn't remember things my wife and I had talked about the previous day. Everything was just gone. Dr. Newhause was the chief infectious disease specialist at Rockville hospital where I was being tested. She ran a much more detailed bloodwork up than previously testing for things I had never even heard of. She also had all the bloodwork sent to the CDC to see if anything showed there or if anything was reported from Miami airport or Barbados.
Everything came back negative, leaving us lost. I just kept getting worse and worse as time went by. I started having severe unexplained fatigue by this point. Other symptoms that started appearing included clouded judgement and reasoning, I couldn't make sense of simple things anymore. I started having pain in most of my joints as well. I started getting headaches daily and they would last all day, usually 3 to 4 days at a time. The fatigue became incapacitating and I started having flu like symptoms to with everything else. To say I became depressed is an understatement. I began having panic and anxiety attacks and the mood swings were driving my wife half mad with worry and frustration.
I'd seen Dr. Newhause about 5 times now. She had referred me to 3 different dermatologists and a neurologist as well. All testing came back inconclusive. Everybody agreed something very serious was going on but nobody had a clue as to what. The 3rd week came where I was going to have to go back to work. Dr. Newhause wrote me out a letter explaining the situation to my work and had me excused for the next 6 months. Fortunately for us I had taken out the long term disability plan with my work, so we got 75% of my pay every week, thank the Lord.
Dr. Newhause told me very candidly there was nothing else she could do for me. Her suggestion was for us to move south, find a job very close to home with little to no stress and have all the testing redone at a later date. After our father died we did exactly that. We moved to Florida and I got a job doing phone calls. I sat in a little cubical and took phone calls 8 hours a day. Easiest job I've ever had. Working at the lottery had definitely been the most stressful position I had ever worked. The responsibility alone was overwhelming, never mind the hours. Before we moved, after the 6 months off of work, I was still sick as all hell. I went back to work in December of 99. They immediately put me on 3rd shift and told me not to touch anything. The writing was on the wall. That was what precipitated our move mostly. Get out before I got terminated.
We bought a small house in Florida and I found a that job 5 minutes from home. Everyday I would come home, have lunch and fall asleep for the rest of the hour I had for lunch. My wife would wake me to go back to work. I did this for 3 years before we lost our home and moved back to CT. I applied for disability federally which as it turns out takes up to 2 years to find out if you qualify for it or not. In the meantime we applied for welfare and went to the local food pantry for help. At one point 3 months before my final decision on disability was due, we almost became homeless. If it wasn't for our cousin coming to our rescue and offering to pay our rent and let us pay him back when we could, we would have been living in our car. At that point I was going around to all the dumpsters in the apartments where we lived and picking out the 5 cent depositables to cash in every night. It wasn't much, but in CT neither is welfare. You can't live on it, that's a fact.
The day of my final disability decision came. We went to the city federal building where the meeting was to take place and met our lawyer there. The lawyer takes a percentage of whatever your disability reward comes out to be, so they don't charge you upfront. I went in to see the judge, who was excellent. He was a compassionate older man who listened quietly to my story. At this point I hadn't just lost my short term memory but I had also lost my long term memories and was seeing a psychiatrist and a psychologist as well every week. I am also a chronic, severe asthmatic from way back when folks didn't have asthma and everybody thought it was hereditary. I knew it wasn't cause nobody in my family tree had it. But I did grow up next to an airport, how about that. My worst symptoms occur with the weather changes, especially barometer changes. My wife went in to see the judge next as my witness. She attested that although I knew I was married to her, I had no memory of our wedding, no memory of our son's graduation, and a list of other examples for her. When she and the lawyer came out to find me, they found me sound asleep in a chair sitting up on probably one of the most important days for our future. We got the decision a month later that they approved my disability and found me unable to work in any capacity due to my asthma. Not due to any of the 23 symptoms I had been suffering from for the last 5 years.
This story will continue when I can write more as part 3
copyright June 2013 Mark Nicholson