My letter to the government~Chrissie

Sun Jan 6 13:39:54 2002

I thought I would share my letter to the government to all of you. I sent it today to the people it goes to. If anyone is unable to do theirs and needs any help, I'll be more than happy to type it up for you. Hugs and Love, ~Chrissie xo's I am petitioning the government to take action to set up an CD-9-CM surgical code to help Medicare and Medicaid collect data on the significant procedure known as "Application of Adhesion Barrier for Prevention of Adhesions." My name is Christine Damon. I am 38 years old and have suffered from chronic pain for 12 years before I was diagnosed as having Adhesions. In the early 1990s I was diagnosed as having Stage 4 Endometriosis and have had a total of 10 surgeries. My first surgery was in 1992 and that was a laparotomy. Then about 5 years later came a laparoscopy. A year after that came another laporotomy, which other laparotomies and laparoscopies followed almost each year. Even after my total abdominal hysterectomy I have had 2 laporotomies. At first the doctor's were telling me it was all in my head. The pain I was having was normal because I was a female and trying too hard to get pregnant. My menstrual cycle was supposed to be painful. Take it and stop complaining over nothing. Go and talk to a priest and take the pain you are supposed to have. For years I listened to doctor's and when I had a normal cycle as they said I should have; I would bleed heavily and the pain would be so bad that I would vomit, have diarrhea, and stay in bed all day with nothing but a heating pad and an over the counter pain reliever I would pop in my mouth like it was candy. After going to doctor after doctor my disease, stage 4 endometriosis, had finally been diagnosed. I never heard of the disease but now I believe I'm educated on it. Now I want to make others aware as well. I have had several laporotomies, laparoscopies, and a total abdominal hysterectomy. To this date, I have had a total of 10 surgeries, with these surgeries has come adhesions, another disease I have never heard about and feel so alone, and another disease I want to make others aware of as well. My gynecologist said to get rid of the pain of endometriosis and the adhesions, I should have a hysterectomy. After the total abdominal hysterectomy he said, you would be pain free. That was 5 years ago and my pain is so debilitating that it's difficult for me to get out of bed in the morning. I've been to several doctors and pain management with the same answer. Adhesions do not cause pain; you must be having phantom pains. Some people like sympathy so you must be that type of person. My husband of 7 years now and I don't have a normal sex life because of this pain I'm in. And if we do have sex like any other normal couple, the next day I'm in bed all day rolled up in a ball crying and vomiting with tremendous stabbing, burning, tugging, pain. God forbid if I ever say a direct "yes" to future plans, what I have to say is, let's see how I'm feeling that day and we can go from there. My life is like an older lady who should be in a nursing home. I'm a 38-year-old woman who feels like she's in her late 90's. I have lost friends because of my debilitating pain; I have lost jobs because of my pain; and my husband has just about had it with my pain. I have no quality of life and I'm at my wits end. Oh sure, I have been to several pain centers, they say that adhesions do not cause pain, pat me on the head and tell me to get some aspirin. Then what is causing my pain? What is causing me to have no life, no friends, and a family who doesn't understand what I'm going through and is loosing contact with me? Why is it I can't lead a normal life - intimacy with my husband, or hold down a job because I'm in so much pain I can't walk or concentrate on the simplest things? Why is it that I have to put on my "happy" mask to everyone just so my pain doesn't show through and I'm considered normal when I have the mask, but my insides are being tugged and stabbed and burning with excruciating pain? Why is it I feel I want to end my life because I can't take the pain that I have all day, every day, day after day, night after night and there is no help for me, and I don't see any help in the future? Why is it that I'm standing on top of a mountain screaming on top of my lungs PLEASE, SOMEONE LISTEN TO ME - CAN ANYONE HEAR ME? PLEASE, CAN SOMEONE HELP ME? PLEASE CAN I BE NORMAL. ……PLEASE…………..PLEASE, SOMEONE HELP ME…….. Please, someone, someone stop this madness! You know with all the research performed around the world you would think health professionals should know by now that adhesions do cause pain. Adhesions stick to an organ and anything else they can adhere to. When I twist my body one way the adhesions pull another way causing the adhesion to pull on the organ and cause me severe pain. Why don't any of my several doctors believe this? Why haven't any of them heard of an adhesion barrier? It's funny really, here I am in my gynecologist office telling him what an Intergel Barrier is and pleading with him to use it on me. He didn't feel he was aggressive or educated enough to perform that task. About five years ago I had a laparoscopy for endometriosis and adhesions. Of course I had to go out of state to finally find a doctor who would perform the surgery. When I got back home to recover from the surgery, I had internal bleeding and almost lost my life. If only there were more research for adhesions then I would not have gone through that horrendous time in my life. I would not have put my family and friends through that horrific scare of seeing me almost die. I have gone through many pain clinics with doctors not believing that adhesions cause pain and that I'm just a drug seeker. I have fought for pain medication to no end. Now that I do have somewhat adequate pain medication they will not give me enough to cover my pain, just touch upon the top of it. Is this how I'm supposed to live my life? There is research for AIDS, cancer, spinal injuries etc. Do we have to get a celebrity with lots of money and public attention to tell the world about adhesions and how they cause pain in the body, mind, and soul? I tried that and even Oprah didn't reply to my many requests. It is my faith in God that makes me believe that I am going through this pain to educate medical professionals about this debilitating disease. That faith is the only thing that keeps me going.

Enter keywords:
Returns per screen: Require all keywords: