The untold trauma of my Medical History. It is so ridiculous that I have to put it into a little steel box within my head. Nothing is straightforward, nothing is understood. Doctor's thought they were Gods as I grew up. I have to admit that my mother's lack of defense is one of the harsh bitter realities that I try very hard not to hate my parents for. I feel like they should have stood up for me and told the Doctors that I was trying my best. I know that they have their side of the story, but my parents didn't question the medical professionals. I certainly didn't question them and now they are lazy, lazy bums, who rely on their tests. I don't want to do research on the Internet trying to diagnose myself. I want a Doctor who listens to the problems, reads my medical history, talks to other Doctors and tries to find the root of the problem. I do not want another prescription. I do not want more pills. I do not want to dull the symptoms all the while suffering. I want to fix the problem.
I had medical insurance until my twenties. I saw the Doctor regularly and then something started to go wrong. Nobody told me the problem, but I began going to the Doctor more often and then the tests started. They would take so much blood each visit it became a joke. On one visit I counted the number of slips the Dr had given me to take to the lab. He wanted over ten vials of blood, even at my young age I knew that had to be a lot since they normally asked for 3 or 4 vials. I stepped into the lab trying to keep a good attitude, I had given blood so often I knew which arm was best and to look away when they put the needle in. I was able to watch the blood squirt into the vials without a problem. I was watching as he put vial after vial onto the needle and I made a benign comment like, "Boy, the Dr sure wants a whole lotta blood. I hope I don't run out!" We both laughed at my stupid ten year old joke until my vein collapsed and the blood stopped. I felt my face fall which mirrored the sinking feeling in my stomach. "I don't have to do it again, do I?" I asked in horror. The lab tech quickly reassured me that he could divide the blood he already took into the unfilled vials. That experience has always stuck with me and told me how serious my problem must be.
The other test that has hung over my head was getting an ultrasound. I was also around ten for that one and I was incensed that I had to participate in a test meant for pregnant women, It was humiliating to have to drink water all morning and then not be able to pee. They explained that they needed my bladder to be full, so they could bounce the waves off of it and see what was happening in my ovaries. When you are a little kid with no experience in reproduction and no desire to know anything like that, this proposition was quite disgusting to me. The very worst was how long they made us wait for the test. I got through it and felt like I could fill up a swimming pool by the time they let me go to the bathroom.
At some point and I don't know when the words were actually said to me, I was diagnosed with Poly-cystic Ovary Disease, which has since been renamed Syndrome or P-COS. I found out that the difference between a disease and a syndrome is knowing the cause and how to treat a disease while a syndrome is still a mystery and Oh! What a mystery I was to them.
Meanwhile puberty hit like a hammer and the effects of P-COS became clear. What they thought at the time was causing my trouble were the large cysts in my ovaries that caused a blockage of estrogen in my body. I had large amounts of testosterone which reeked havoc in horrible ways. The one that is the most obvious is the full beard I could grow at the age of 12. It makes me cry to write about it because it is the strongest barrier to ever being close to another person, No matter how sharp the razor is or the red bumps of irritation from going over my face there is stubble, irritating, harsh stubble. My saving grace is having red hair which is lighter than most so I can get away with having the 5 o'clock shadow, but the shame of it coupled with the weight drove me to hide. The other kids started to notice my problem in Jr High. I walked home from school and groups of 5 or 6 kids would follow 3 feet behind and call taunts out to me. "Hey, hey! Do you shave everyday?" "Do you kiss your mother with that face?" "Are you gonna grow a full beard?" I kept my cool and just bowed my head and walked home, but I was worried about someone stepping out of the group and I would have to deal with violence. Then as I got closer to home I didn't want them to know where I lived, so I turned down a Cull-Du-Sac before my own and they got bored when I didn't respond.
I never told anyone in my family, not my Mother, not my Father or my Brothers about the abuse I went through everyday. I was and am safe in my home and I didn't want their view of me to change. I take my mothers barbs about being anti-social, in stride because I know she doesn't have a clue about the specifics tortures I endure from other people. I try and take whatever blame she lays on me because despite everything I know she loves me and sees the best in me. I love that she wants other to love me as much as she loves me despite my rough edges. I know that I am very lucky to have a mother who accepts me as I am and lets me be myself. I know it is the reason I survive with as much metal health as I have. I am broken. I admit to that, but I try my best to be the best.
My weight climbed every time I stepped on the scale in the Doctor's office. The specialist was so horrible to me I remember with clarity Mom calling me to come inside to get ready for an appointment and I was so determined not to go I hid under the car for an hour until I thought it would be too late. She was angry with me, but it didn't match I had avoided the Dr who screamed at me to lose weight every time I went. "I you don;t lose weight you are going to die of a heart attack, get diabetes and most likely get "The big C!" I had to ask what that was on the way home and Mom said it was cancer. He acted like I sat at home all Day eating candy bars. I will explain my eating in a future post, but I can say that I ate like a normal kid my age. He told me to write down every thing I ate until the next appointment. I did what he asked and instead of showing me the tub of ice cream that I am sure he thought I ate every night I saw a normal diet. Yes, I did eat sugar. Yes, I did like treats, but I never got up in the middle of the night made a pie and ate the whole thing in one sitting, No, my skinny brother did that!
Did the Dr care that I did what he asked, no of course not! I stepped on the scale gained more weight and he was off yelling at me again. He threatened to send me to a nutritionist. I said,"Fine!! Do it!" He didn't. He threaten to wire my jaw shut. "Fine! Do it!" He didn't. Over and over the same thing every appointment. The same yelling, the same threatening. No help. During this time I was dealing with my peers coming after me and my own feelings of inadequacies. My parents made me go to a shrink that was the biggest nerd I had seen in a while and I had no faith in him at all,but I tried to tell him the truth as much as I felt comfortable, but I had no belief that he could help me and that was it.
It felt like the little the Dr's did try to do for me was all wrong. Because of the high levels of testosterone I also did not have a normal menstrual cycle, I would not have any bleeding for 3 to 6months and I liked that part, but as a consequence I would then have to deal with a 3 month period. It would be so bad I would have to draw a bath and sit in the tub for hours trying to get relief. The Dr thought it was terrible that I wasn't regular, so he finally put me on birth control pills. Another humiliation to add to the others at age 14. The Dr was convinced I would gain weight on the pills and did not want to put me on them, but guess what? I threw up every morning. I tried to use it to my advantage to get out of going to school and I did stay home quite a few days, but my mother wasn't buying it. I went off of them when I threw up into my clarinet case in the middle of band class.
An off- shoot of the main Kaiser building was finally built in Simi Valley and I stopped seeing the specialist. Then in my twenties my mother started to show signs of Type Two diabetes, which comes from being overweight. I show up as being insulin resistant, which was immediately blamed on my weight, but they have since found out that the cysts in my ovaries where a symptom of a greater problem not the cause of P-COS. Also being insulin resistant is a symptom of P-COS and I really wish the problem had been address then. To me I did not have diabetes, but the Dr treated me like I did. I had a bad reaction to the pills and it made me very sick, so I did not take the pills.
It felt to me like I wasn't being listened too. I pride myself on knowing my body and it felt to me like I didn't have any imput. The Dr's and nurses would talk to one another , ask me questions to clarify, but I was a puzzel to figure out, not a person with any common sense, which I do understand. I realize that the medical profession is dealing with a majority of idoits and I give them a break because of that, but come on! At some point they need to look past the the file and see how to deal with me, as a person.
Then I turn a certain age and I was no longer under my parents health insurance and because of the pre-existing conditions, I was told I could not get Health Insurance unless I worked as a drone in a company and that was something I could not make myself do. I went without any kind of help for about 12 years. I found out more about P-COS because my sister-in-law was diagnosed with it when she tried to have a 2nd baby. She found Dr's who were willing to work with her and I found out more of the recent developments with the syndrome.
I tell you this because I want you to know the background I am coming from. My problems are not straight forward. I know it sounds bad, but I wished many times that it was cancer. That disease can be quantified. You may have a shorter life span, but when I was a child people were very kind and gentle to a child with cancer. Their sickness is not they're fault and we try to be understanding towards them. Not me, I looked like a glutinous weak-willed trolled who can not stop shoving food into her pie hole, so for that I reason I have felt judged and blamed for my sickness. I am nothing like that, but I can't go up to a group of people and say, "Uh, I know I look bad, but there is something medically wrong with me, so be gentle." I was constantly frustrated by the treatment I receive at the hands of humanity and for my sanity I had to let the cruelty roll off of me like a duck with water.
Stay tune for part II where I will explain my recent health troubles.
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