Okay, here is what I am going to do. I hope some of you will join me, but even if you do not, I am going to do it. I am going to do it because I am tired of watching my friends suffer and die. I am tired of watching them get pushed around and bullied – of being accused of lying, making up symptoms, and wanting attention. I am tired of them not receiving good treatments and medications – or even being treated like human beings by the medical profession. And I am not going to sit around and be told that I can’t make a difference any longer. I am not going to wait for bills, or lobbyists, or patient associations to come and rescue us either. I am not going to request funds or request that funds be sent to any of the existing groups that claim to represent us. I am going to write a letter, and I am going to send it out to every congressional representative, every senator, the president, the SSA, and maybe even a couple of committees and subcommittees. I am going to write every drug company and nutritional supplement company I can find, write and call all media sources I am aware of, and send my letter to every hospital I can. Furthermore, I am going to put a copy of this letter up here for you. Use it as is, plagiarize parts of it, pretend it is your own, alter it – whatever you want to do. Or simply write your own. Use my story, or tell about your own experiences. Send it to any or all of the places I have mentioned. You will need to adjust the wording in parts to tailor it to the various locations you are sending it (i.e. government officials will need a slightly different version than media sources). But the basic format and wording is there. If you need additional help, please do not hesitate to send me a PM. I will gladly help. Here is a link where you can find information regarding your government representatives: https://govtrack.us/. You simply need to enter your zip code, and the site will find your representatives for you. As far as media contacts go, ideally, our advocacy group (https://facebook/groups/Gastroparesis.FightingForChange/) will be compiling a list of sources in your state/local area to help you know where to send it. But if that does not/cannot happen, then I urge you to find these sources yourselves and send the letter. The same goes for pharmaceutical companies and hospitals. (You can join our group at the link above, if you so desire. We would love to have you.) Here is a copy of the basic letter I will be sending. Date Name of Intended Recipient Title of Intended Recipient Company Name Address of Company Dear ____________ I am writing to you today in the hope that you can help me bring attention to the millions of people who are suffering and dying every day from digestive/motility disorders. Just a couple of weeks ago, my community had to endure the passing of yet another member. She was twenty five years old -- but there have been many who have died younger than that because of these unrelentingly destructive diseases. Having recently been diagnosed with gastroparesis, one of the many different types of motility disorders, I know first-hand the damage and destruction this disorder can cause. It is truly life-altering. On bad days, I am confined to bed, in severe pain, unable to eat or perform daily life functions. Even on good days, I can eat very little, frequently feel weak, and experience excruciating pain. Available treatment options include often ineffective surgeries, such as electrical gastric stimulation (pacemakers); medications with unacceptable side effects, such as Reglan and Domperidone (which has not been FDA approved); dietary changes (liquids or soft foods), which rarely provide any relief; and feeding tubes or total parenteral nutrition (TPN). As of now, there is no safe, reliable, and effective treatment or cure available to those of us who suffer from functional/motility disorders. I sat up much of the night last night with a friend who was suffering greatly and who was turned away by a medical community which either lacks the knowledge or the will to help us. I urge you to assist us in finding and receiving relief from our suffering. I urge you to support any and all efforts to help educate patients, medical professionals, and the general public regarding our plight. I urge you to seek new treatment options and fund these efforts. I have attached my personal story regarding the hell I endure on a daily basis. I hope you will take the time to read it – and I hope you will act on behalf of all of us who live this waking nightmare. Thank you for your consideration. Here is my story and my plea… In early February of 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. At times, it has frightened her so much that she has asked my husband to get me “Life-Alert” for the times when she cannot be home with me. 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 don’t 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 “Activia,” I would be okay. My own doctor (PCP) 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 able to do things myself – always having to rely on others to do them or get help doing them. 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 hundreds (maybe 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 have to 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, all that being said, what it really comes down to is that I am tired of doctors who do not understand or who do not care. I am tired of excuses as to why they cannot help. 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 stomachache. I want treatments that work. I want a cure. I want better efforts and advocacy on our behalf. I dont often post messages this direct in so public of a forum, but I am weary of trying to pretend like all of this doesnt matter -- or that it has its place elsewhere and not out in public. We need awareness. We need help. We need treatments. We need cures. We need a year in which not one more of us has to suffer and die. Thank you again for taking the time to consider our plight. If you would like to contact me, I can be reached by telephone at (phone number) or by e-mail at (e-mail address). Please take the first step toward helping us. Please do not ignore our pleas. Please do not turn your back on us. Sincerely, Melissa Adams VanHouten
Posted on: Fri, 16 Jan 2015 22:23:03 +0000
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