Living with Gastroparesis
Joshua Rundle
Life with a rare disease can be overwhelming a lot of the time. It can break anyone, it doesn’t matter if you are a body builder, or a computer programmer. This disease can test your ability to handle things most people would rather die than deal with. I have been living with Gastroparesis, and type 2 Diabetes for over 11 years now, and I am ready for the end to come for me.
Most of my childhood was normal minus having type 1 diabetes, so I was what I would say overprotected by my family. It also caused a lot of anxiety issues I believe, because you always had to be sure you were prepared anytime you left the house. The only things I really missed out on as a child was the parties, and meeting other kids. I did not have more than one or two friends growing up. A lot of kids couldn’t handle being around me for fear of getting it. At this point in my life there is nothing from my childhood I regret, or want to do over.
It was when I was just about to turn 20 when I had the gastroparesis (GP) first start to set in. Many trips to the ER with my girlfriend spending days on end in just the ER. Then it slowly turned to being admitted in the hospital for sometimes 2 weeks or more trying to figure out what was going wrong with me. Stomach emptying tests using radioactive elements, upper and lower G.I’s. For years I felt like a test lab rat. I had a lot of doctors say things like “well we will just keep poking at it till it gets better”. It never got better, it only got much worse.
I finally found a really good doctor when I was 22 and he helped me out a lot. He first diagnosed me with the GP, and began to try different experimental treatments since there was nothing on the market already for this horrible disease. Some of the medications I got came from Canada because the USA would not approve them for sale here. Things were rolling but I wouldn’t say progress was being made with the GP.
Now until here you have heard about the disease, and a little bit about what it does. Now you will hear about the horrible side of things, and why I am so ready to end my life on my own and be done with a world that seems to of lost compassion. The GP has deadly effects. I sometimes vomit 40+ times per hour. It causes severe retching that can lead to an aneurysm. I have lost 15 pounds in a matter of days from throwing up so often, and having tissue get burned up. I can eat just about anything I want and not gain weight, so I am generally always way underweight. Then there is the ever-present pain. This pain never totally goes away either. Imagine you have a blender in your stomach on frappe that is what it feels like on a good day. On a bad day the pain is so bad it makes me puke and black out for an hour at a time. I suffer chronic pain and nausea from the nerve damage and again nothing helps.
What have I tried for treatments? Glad you asked. I have tried almost everything here and abroad. Zofran, Compazine, and Phenergan all 3 failed for nausea. Ativan also failed for nausea but does help slightly with the muscle spasms in my stomach. Dilaudid is the only pain medication that actually worked and worked well, but the doctor I see claims it will do more harm than good because narcotics will slow down my already slow guy and intestines, but I could give a rat’s ass about that, I do have Miralax to keep things normal. I would rather live with the side effect then to have the pain and nausea. Oh yeah the dilaudid also prevents most of the nausea. The only other medication that has helped at all is marijuana believe it or not. It kills the nausea totally dead, brings the pain down to a level I can deal with, gives me a bit of energy, makes me want to eat, and generally makes me feel like a human.
I don’t know when doctors stopped being compassionate, or perhaps I always end up with the wrong doctor. The meds I do need to feel comfortable and have a quality of life back they will not give me because so many “others” abuse it. Well I am not others, and I am tired of hurting so much. I am Tired of being stuck in a house all the time with no human contact. That takes me to the next step of this paper, life without friends.
I never did have many friends growing up, and into my adult life I just sort of got really picky and generally just talked to people on the Internet. Most people I know locally don’t seem to want to come here to spend time with me. I hate it that I have to try and drive myself to people places risking my freedom because I have no drivers license, and risking my life because I can’t drive very well anymore due to loss of vision and loss of feelings in my feet. Nothing sucks worse then being in the middle of a small GP flare up and having nobody to help you even get to the bathroom. I have had to call 911 most of the times I get that sick because nobody can or will take me the 40 miles to the good hospital. The local hospital is a joke, it is mostly old folks living there and most of the medical floors are shut down. In this hospital at Edgerton Community Hospital I have literally had nurses and doctors yell at me saying it was my fault, and that I didn’t try hard enough. Had doctors say stuff like “oh your gastroparesis shouldn’t hurt that bad” how the hell would he know, nerve damage I am sure feels different to most everyone. Then they labeled me drug seeking and every time I go in there now before they say anything they be sure to tell me they will not give me a narcotic. Which is fine as long as they do have something that will work, and in my history nothing but dilaudid has stopped the GP flare ups.
If you think that is the worst of it think again, yeah I know this is a sad story. I have no medical assistance, no insurance, no help whatsoever. I sometimes I have scam people online or steal things and pawn them just to get medications to stay alive. I get denied off every program and they never flat out say why. I tried social security they said I have to have work credits, Medicare said I had to be 65 or older, the local help you have to pay just to apply so that is not happening. I can only work from home now so finding a legitimate job is very difficult. I have no source of any income, I am a student in college only so I can get more loans to help pay for meds but student loans are very small compared to the high cost of my medications and treatments.
So that is my short paper on life with this disease. I wake up every morning wanting to overdose and die, I hate life, I hate humanity now, I even hate myself because something inside tells me maybe it is all my fault and I didn’t try hard enough. Who knows? I am not a doctor so I couldn’t tell yah. Maybe someday there will be a cure or at least a working treatment. Until that time I will lay here suffering, begging the reaper to come take my life while I sleep tonight.
