Life Forever Altered: My Diagnosis of Gastroparesis

April 29, 2015

I didn’t use to be the kind of person who shares her personal information – but things have changed since February 2014, when I spent a week in the hospital and was diagnosed with gastroparesis. I am guessing most people have never heard of this; I know I had not, prior to being diagnosed. My life has changed in ways I could not have imagined – overnight.

One day, I was eating at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach), diagnosed, and sent home with only a brief explanation of my illness. For the next few weeks, I was on a liquids-only diet and told that I would gradually work up to soft foods and solids.

Unfortunately, nothing like that has occurred. I am now able to eat some soft foods, in tiny amounts, but it is clear to me that I will never again be able to eat “normal” foods in “normal” amounts. At first, I told myself I would not let this disease define or control me – it simply WOULD NOT be the center of my life. But as time passed, I began to see how foolish that was. Every single day, every second of every day, I think about food. I see it, smell it, cook it, and feed it to my family; but I cannot have it. I look in the mirror and see a skeleton.

I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I didn’t think were possible. Some mornings, I do not think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And almost every night, my husband must help me up the stairs to bed because he is afraid I might fall down those stairs. My 11-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out.
I grieve over the fact that I can no longer travel or get out of the house for much of anything – over missing family events, my daughter’s activities, picnics, concerts, and other such functions. I worry that I will not get to see my daughter graduate, get married, or have children. I am not on the verge of death today (at least I do not so), but when I look in the mirror, I realize that people like this do not have long life spans, and it bothers me.

I get frustrated because people do not understand how my life is affected by GP. If you saw me on the street, you would likely not realize I am sick. I do not look sick. People frequently ask me if I am better now. I can’t seem to convince them that I am never going to be “better,” not in the sense they mean. I am told I “just need to eat,” or that if I would try yogurt, I would heal. And though I know people mean well, it still frustrates me. I am angry because I am a control freak, and I don’t like being a slave to this disease. I don’t like relying on others. I have screamed at, smacked, and pushed my husband away for simply trying to help me. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating – even though I know I shouldn’t – just to “show” this disease who is in control.

Mostly, I am angry because I do everything I am supposed to do – eat the right foods, exercise, and ingest the known medications – and I am still sick. There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die. He does not – and I am thankful for that. I think about others who have this disease who are much worse than I am. I know many people who have sought treatment for dehydration, pain, and malnutrition, and who have had to resort to feeding tubes or ports for nutrition. I sometimes look at them and think that this will surely be my future, too, and it scares me.

I do not understand why I have this disease, but what I do understand is that it is somehow important for me to share my experiences. In fact, I believe it is important to share how much I have been blessed BECAUSE OF this disease and to let others know that they can make a difference. I tell you, honestly, every person I know has helped me in some way. They have visited, called, done chores and tasks, and simply cheered me up with their stories. I am heavily involved in online support groups, as well, and they have truly saved my life. I have learned much, for sure, but beyond the knowledge gained, I have received more support, understanding, and kindness than I could have dreamed. I have made friends I feel I have known a lifetime. I tell people all of the time that I hate this disease, but I dearly love the people have met because of it. Your actions are meaningful. Do not ever be convinced that you can do nothing to help or that you do not matter. To those struggling, your efforts to understand, cheerful words, helpful attitude, and other contributions truly make a difference.

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