In early February 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis. I am guessing most people have never heard of this; I know I had not, prior to be diagnosed. My life changed in ways I could not have imagined – overnight. One day, I was able to eat at buffets, if I so desired, 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, given only a brief explanation of my illness and its treatment, and sent home. For the next few weeks, I was on a liquids-only diet, and I was told that I had to gradually work my way up to soft foods and (eventually) solids. Unfortunately, nothing like that has occurred. I am able to eat some soft foods, in tiny amounts, but it is becoming clear to me that I will never again be able to eat “normal” foods in “normal” amounts.
At first, I told myself that I would not let this stupid 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; I smell it; I cook it and feed it to the other members of my household; but I cannot have it myself. I look in the mirror, and I 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 did not 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 single night, my husband has to help me up the stairs to bed because he is afraid that if he does not, 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. She is frightened by the thought of leaving me alone while she attends school and worries about what she might come home to find.
I grieve over the fact that I can no longer travel or get out of the house for much of anything. I grieve over missing family events and not being able to attend my daughter’s activities. I grieve over not being able to go out to eat, or on a picnic, or to another concert, or any of the other things I know are not possible anymore. I worry that I will not get to see my daughter graduate, or get married, or have children. I am not on the verge of death today (at least, I do not think I am), but when I look in the mirror and think about how tired I am, 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 all of this. If you were to see me on the street, you would likely not realize I am this sick. I do not look that sick. And because most people are unaware of the effects of GP, they ask me all of the time if I am okay now. I cannot seem to convince them that I am never going to be okay again – not in the way they mean it. I am told that I “just need to eat,” or that if I would only try yogurt, I would be okay. My own doctor accused me of being an anorexic and told my husband to “watch me.” And though I know people mean well and are trying their best to help, it still makes me so frustrated.
I am angry because I am a control freak, and I do not like having to be a slave to this disease. I do not like not being “helped” with everyday tasks and always having to rely on others to do the things that need to be done. I have screamed at, smacked, and pushed my husband away for simply trying to help me more times than I can count. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control. Crazy, I know! I am angry because I do everything that I am supposed to do – eat the right things, exercise, and ingest the known medications – and I am still sick.
I think about the others who have this disease who are so much worse than I am. There are thousands of posts in my Facebook feed every day from people who have had to go to the ER or back in the hospital for dehydration, pain, or other such conditions. I know so many people now who have feeding tubes or ports for nutrition. I know many who have developed other serious conditions because of the GP. I sometimes look at them and think that this will surely be my future, too, and it scares me.
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 so thankful that He ignores those moments. I mostly have a good attitude about my situation and try to make the best of it. I am a Christian, and I believe there is much ahead after we leave this world. I also feel blessed that I have been given so many years with the best husband and daughter anyone could imagine. I am truly thankful for each day I get to spend with them. I do not understand why I must have this disease, but God does, and I trust Him.
I have received help from family members, friends, and acquaintances beyond measure, and I am most grateful for that. I am thankful for the support I have received from the existing GP community as well. You cannot imagine the blessing the online groups have been. I have learned much, for sure, but I have received so much more than information. I have received more support, understanding, and kindness than I ever could have dreamed. I have made friends that I feel I have known for a lifetime. I tell people all of the time that I hate this disease, but I dearly love all the people I have met because of it.
But despite these blessings, what it really comes down to is that I am tired of doctors who lack the knowledge or will to help. I am tired of excuses. I am tired of my friends’ pleas for assistance being ignored. I am tired of them being treated like drug addicts because they want relief from their pain. I am tired of them being mocked and being dismissed as if they have a stomach ache. I want treatments that work. I want a cure. I want better efforts, advocacy, and research on our behalf. I am weary of trying to pretend like all of this does not matter — or that it has its place elsewhere and not out in public. We need awareness. We need help. We need a year in which not one more of us has to suffer and die.