Thank you to everyone for all of your kind words. You had many suggestions and a number of questions. I am going to attempt to respond to these through offering some deeper background on myself and my family.
I am currently the only employed person in my home. my wife used to be the big bread winner, however, she lost her job two years ago. She was butchered by a surgeon in 2003 and her job was supportive all the way up to her 9th surgery to repair the damage. The 10th, however, ended their patience and they set her up and fired her. Ironically, she hasn't had another surgery since. The result was the loss of over 50 grand a year in household income as well as our medical coverage. After 1400 resumes she has received a grand total of three interviews and four phone calls, half of which were scams.
The consequence, of course, is that not only can I not slow down my hours, but I must increase my workload as much as possible.
5 years ago we lived on 2.5 acres and I had a workshop in a 3.5 car garage. Now, after three moves, we rent half a house in an undesirable neighborhood and drive our son 15 miles to a decent school... or will be in about 6 weeks or so.
My job is commission based, I am paid per finished service call, so I work until I am done.... sometimes that is 10 hours, sometimes that means a 14 hour day. It is unavoidable. We have no further to fall if we wish to retain a roof over our heads.
So... yes. I should work less, but I cannot afford, literally, to do so. Luckily, I love what I do... helping people. I repair appliances (free advice to any who asks by the way) and the people I meet are almost always kind, good and appreciative folk. It feels wonderful being able to help them out (I mostly do insurance work so am rarely asking them for money). I've been many things... copier tech, fax tech, printer tech, salesman, retail manager but what I do now is, aside from writing, the most fulfilling career I have ever had.
I fear the day I can no longer do my job. Right now, I suffer from occasional bouts of confusion in the field and misdiagnose problems. I sometimes go back to a call with parts I have ordered and, when I get there, I can't for the life of me understand what in the world I was thinking ordering 'that' part for 'this' problem.
It used to be that I would have to push through the last several calls of the day. Now, i find myself pushing my way through the last 75% of my days. If not for the wonder of the palm drill, I would have to retire from appliance repair. As it is, there are times when my hand will stop working at all and I have to sit and wait for a little while before getting back to work. Yet, it passes and, so far, I am able to do my job and make enough for us to scrape by each week. For this I am terribly grateful to whatever insidious god it is who created this pernicious disease.
Now, to answer the med questions....
On Feb 15th, 2002, I was admitted to the hospital with pulmonary embolisms too numerous to count (so I was told) in both lungs. I had been unwittingly walking around with a blood clot in my leg for over two weeks. I should be 10 years dead. Knowing this, btw, makes it easier to deal with the lupus since every day since that date is an extra day for me.
Anyhow, they wanted to know what a 33 year old was doing getting blood clots so they ran genetic tests. They found two mutated genes and put me on thinners for life. It took me 2 months to walk to my own back yard and 10 months to get to where I could work again.
6 months into my new job i started wondering why I was so very tired all the time. My boss was wondering why I was purposefully sabotaging copiers when I was the by god service manager.
This went on for some time. Cognitive failures, fatigue, pain... you all know the drill. My mom, who has lupus and a full cornucopia of auto-immune diseases, said it sounded like I had lupus.
It took a long time to get a doc to agree with us on that score and I have yet to get a rheumy to make the call. They keep prattling on about blood work, ignoring the fact that the lupus checklist of symptoms was created because the blood doesn't always show the disease.
Anyway.... my GP is my lupus doc, or was when I had medical and I have been to many specialists. Those resulted in me learning that I have blood flow issues in my brain and vitamin deficiencies. A B-complex, magnesium and vitamin D cocktail regimen has done wonders for my fogginess.
Singulair helps my breathing, tramadol allows me enough pain relief to work. I take vicodin at night, as I drive all day and refuse all narcotics while working. Plaquenil worked wonders but gave me horrific dreams so I dropped it. What I called anti-seizure meds is actually just xanax. It use to stop the seizures within about 15 minutes but I have discovered this week that, no matter how many of the things I take, they no longer work. So, I just ride the seizures out, though sometimes I will megadose the vicodin so that I can at least ignore them... only do this when they are especially violent. i have dropped several other meds... cholesteral, anti-depression and the like. I also used to take arthrotec which, combined with the tramadol, allowed me to almost feel normal but medicaid won't pay for them. Also, my kidney doc says to leave them alone.
I have a kidney doc because my kidneys have shut down/tried to shut down 5 times over the year. This is preceded by huge, deep hives appearing all over my body. Kidney doc says the hives are the cause of the kidney issues... all my bodies water goes to feed the hives and my kidneys then screw up. I have decided to believe him because the alternative, lupus in my kidneys, terrifies me.
I know, in my heart, that I will see a day when I can no longer work, that there will come a day when I no longer recognize my wife (neuro so much as promised me alzheimers based on my pet scan results) and that a ripe old age is something I will never see.
I fear, in my heart, the day the seizure doesn't stop, the day I can't hold my drill, the day I can't control the pain.
However, these things are in the future. Here are the things I have now... a rewarding job, seizures that stop, pain that I can control, fatigue i can overcome, a family so loving that we are envied despite the past decade of horror, a wife who will support me always, kids I adore, friends I can talk to, an insane and beautiful perma-kitten, a silky soft cat that curls around my hand when I pet him and a giant moose of a puppy pitbull who defines sweet and, now.... people I can talk to who are walking the same path as I and can offer commiseration rather than simple pity.
So... thanks folks. My story has awful parts, but it could be so much worse.
Thanks for listening...
Bruce