I became ill over a year ago, in March of 2018. I was throwing up all day, every day. I was in and out of the hospital three times last year, for five days each time. They never figured out what was wrong with me, even after ten months with many tests. Then they ran a nuclear bypass x-ray in late December. I was diagnosed in January of this year with Severe Idiopathic Gastroparesis. I am 28 and have no conditions or history that would explain this. It is basically where your stomach stops working and the food doesn’t go through the intestines. Instead, it comes back out, or it can sit in the stomach and become fermented and then can create bacteria. If that occurs, it has to be surgically removed. Blockages can be life-threatening.
This isn’t a disease I would wish on the worst person in the world. The nausea is very intense. I live with it 24/7. The medicine is rather expensive. I live in pain 24/7, too. Some days it’s so bad that I end up in the ER. I have gotten to a point now, where I am having trouble even keeping water down some days. Because of all the throwing up, and the stomach acid, I have had teeth pulled. I need two more extractions now. This is a lot of out of pocket expense.
Due to my condition and the resultant malnutrition, I have extreme hair loss, mood swings, visual problems, tooth decay, body cramps, hearing problems, headaches, severe fatigue, anxiety and depression. My weight has dropped dramatically from 195 lbs. to 110 in under a year. If I go below 100, then a feeding tube must be inserted into my small intestine or down my already damaged esophagus, which can lead to more health problems and will affect my already seriously compromised quality of life.
I am really trying not to hit that point, but we don’t always get what we want. My illness is on the NORD list (National Organization for Rare Diseases). There is no cure, no known cause, no pain relief. Because of this disease I am unable to work. I have no health insurance. I have applied for SSD and SSI, plus Medicare. However this all takes time and sometimes a long period of time, to come through. My mother is doing her best on widow’s benefits from Social Security, but she can’t afford the medicine I need each month. My illness has caused her a great deal of stress and she is understandably, very worried, though she is devoted to helping me.
I rarely see anyone aside from my mother, as not everyone understands my illness and I hate to have them see me this way, so she doesn’t have much of a life now either. Yet she won’t give up on me.
I live in Oklahoma, but I desperately need to go to a clinic in Cleveland, Ohio, where there is a doctor who specializes in this disease in young people. He will run more tests and possibly do surgery. I am thankful he has excepted me as a patient. I am asking… No, I’m begging you to help me out, please, if you are able! Any amount you can manage will be more than appreciated. You may be saving my life.
Thank you for reading and, if you are able to donate something, I wish to thank you so much in advance. May God bless you and your loved ones!
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