I am 41-years-old and have always attempted to work, pay my taxes, and live what many feel is a normal life. I have three fantastic children, Samantha who is 22, and lives in Knoxville, Hilary who lives at home and is 20, she is a special needs young adult, she has had 78 surgeries since birth and was two pounds at birth, being born three months premature, but she is still with me, and I have only God to thank for that. I also have a son named Benjamin, whom I am proud to say, is serving our country right now in the Army.
About six years ago, I got a tiny scratch on my lower right leg, something 99 percent of people go home, clean and do not think about again. Well that inch scratch turned into a wound that was deep and got to be about the size of a golf ball. At that time I was married, but my now ex-husband was not home much, yelled and hit me and refused to even so much as give our special child her medications, or help with her care, which requires 24/7 attention. Because of this, when I went to the hospital and the doctor told me I needed to be in the hospital on IV antibiotics, I had to explain to him that I had a special needs child at home and could not do so, was there no way that I could do these IV antibiotics at home. Well, he set it all up, and I still also worked 40 hours a week, took care of my special needs daughter, my other daughter and son, and kept our house up, and took my IV antibiotics. It wound up that I was on IV medications for two years, as the wound on my leg went from golf ball size to going from my ankle almost to my knee. I was leaking more than a gallon of fluids a day from my leg, I was on 2 different IV antibiotics, was made to use 50 percent bleach to 50 percent water to clean the wound three times a day, which needless to say hurt like no other. I tried never to show that hurt, because of my children. I also never took my pain meds, because I had to be clear minded because of my special needs child. My now ex-husband also in this time took my pain meds and then left us, went to work one day and never returned. I did divorce him and the Judge ordered he pay child support, to this day he owes more than $28,000.00 in back support. I cannot even get a warrant for him, as I do not have an address for him.
It turned so bad that it got to the point of me going to the hospital or I would die. I called a friend and she helped get my disabled mother here from Wisconsin, so she could watch my children while I was in the hospital for 18 days, and then everyday went to the hospital for whirlpool treatments on my leg, to finally heal the wound. They had told me they thought they would have to remove my leg up to my hip. But with much prayer thank God that did not occur. I still have a lot of trouble with fluid build up in both legs and being scared to death everyday about getting even the smallest scratch on either leg.
I still worked and cared for my children, but because of all of this, I was not allowed to be on my feet, and gained a lot of weight. I have tried diet after diet, and gone to the gym, and exercised, but have been told I needed to have the gastric bypass surgery by different doctors. I have my special needs child, who has a terrible seizure disorder, all her liquids go through a feeding tube, she is in diapers, and she has CP. Is blind in her left eye, has the mental ability of a 2-year-old, and has severe self abusive problems, she will bite the skin off her arms and or you, kick, scratch, bang her head, etc. and when she gets into these difficult times she becomes very strong. We have worked with every behavior person in East Tennessee, to no avail. Her Nero doctor thinks it is a type of seizure she is having, as it also occurs in her sleep. She is on two different medications that help somewhat, but because of this I have never been able to find anyone to help care for her.
I lost two jobs because nurses were suppose to be here and didn’t show up after one time of dealing with my daughter and her self abuse. They would never come back. Yet these are people who are trained to deal with her type of issues. One even left her alone, because she went into a self abuse mode. My daughter was alone for more than 45 min. Most of the time she is ok, but there are the times when it does occur. She is a very loving girl and can make you laugh; she has taught me so much within the 20 years God has allowed her to remain with me. But I know if she were not here at home where she is loved and wanted, she would be placed in a home and then be drugged, because that is the easiest way to deal with someone like her. It is a proven fact, that so called difficult people are put away and in those places. Yes, even in this day and age are not treated well and or made into zombies because of medications.
I have insurance through where I work; however, weight-loss surgery is not a covered item. I have attempted all kinds of appeals; my personal doctor even spoke with the Medical Director at BlueCross BlueShield to no avail. But, if I was not working and was on Tenncare because of my legs, it is a provided service. I have been told if I do not get this surgery, I will die. I have been in the hospital five times with the last two years, at a huge cost, because of the weight, hernia repair three times, my legs two times.
I have sleep apnea, stress incontinence, arthritis in my knees, venous stasis disease, lymph edema in both legs, depression, chronic skin issues yet the insurance company will keep paying those costs when they have been told by the doctor that my medical issues would clear up completely if I had gastric surgery, which is only $25,000 verses the $60,000.00 they have already paid just in two years. Those costs will continue to rise as I will have even more medical issues.
Is it so wrong to want to have the surgery that will make things better, and allow me to be here to care for my special needs daughter, then to be dead, and the state have to pay out hundreds of thousands of dollars for her care, that gives her no quality of life? Why should I have to demean myself and not work and keep myself respect by continuing to work and be a tax payer, then to get on state assistance, and become to me a bum?
Is it so much to ask to be allowed to have the chance to remain with my special needs child, to offer her the care and love she requires, that God gave into my care, or He would have taken her back home with Him, if He didn’t think I could care for her?