COLD and IRON and WINTER and SOLITUDE

If you live anywhere on this earth it has been COLD this winter. Mind numbing cold has resulted in endless days of Netflix and sewing. I was fortunate enough to purchase a GO BIG Accuquilt cutter. It has been quite helpful because it has eliminated the need to cut fabric by hand. Sure there is still fussy cutting, it is minor compared. Netflix has an endless supply of movies and series to binge on but yes I am waiting on spring….and it is still January. This gives thought to an upcoming visit to the Oncologist office.

Since treatment for Hemochromatosis began in 2008 I have never gone more than three months between doctor visits. I have never gone more than six months between a phlebotomy. It feels good but scary. The part of me which recognizes and understands a lifelong need of medical care also feels a need for a more personal treatment plan. Sure I have monthly blood lab visits but a letter in the mail doesn’t quite fulfill a doctor in a white coat saying “your labs look good”. This is what insurance companies want; less time and money spent with actual doctors, more time (still less money spent) with only automated laboratories. The person you do see is someone trained exclusively to draw samples for the blood tests. They are not trained for anything other than how to use a properly prepare a sample of blood and urine for testing. They can’t evaluate the person sitting in the chair ( other than alive).

All of my medical care is done by separate doctors in separate locations. Each requires a copay; per insurance. Each runs separate lab tests. All results are returned to individual doctors and the primary care I have chosen.

Is this the future of medicine? Ten years ago (after another ten years of being unwell) I was diagnosed with an unknown disease; Hereditary Hemochromatosis. It is still unknown and very under diagnosed. It was an accident that I was diagnosed. I was diagnosed with Rheumatoid Arthritis. Yet the biological i was taking were not helping the symptoms. Had the meds helped I wonder if Hemochromatosis would have been discovered? Sure my liver enzyme blood tests were off. They were always off. Not enough to cause any concern. Looking back at years of blood tests results my liver enzymes were at their worst when I was taking an antidepressant. What exactly in those magical little pills anyway? Why is it easy enough to prescribe a pill for unhappiness without a full medical exam? Why was it so easy for the opposing lawyer in a custody battle able to order I take pills which caused further damage to my liver? Why does my sister, who is an RN, feel she has exclusive rights to demand I take a psychiatric medication to treat Hemochromatosis? My liver is already damaged from iron deposits. She is the one who has had the alcohol problem…..Granted she has specialized schooling as a prescribing psych nurse so I’m sure she knows her pills. Lol (if you know what I mean. Wink-Wink) … she also states Hemochromatosis is not what is making me ill. (Again, it has been 10 years since I was diagnosed with HH. The prior 10 years I was still undiagnosed. I was ill with an unknown disease which makes my body ache. I stopped socializing. My entire social life ended as I knew it. I slept 12-16 hours each day.

Which leads me to my next question…. why the iron panel necessary to rule out Hemochromatosis is not included in a yearly physical? I’m not asking about the genetic test. That test is a private matter which only a person with a family history should consider.

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