I've struggled with this posting.
Maybe it's because I prefer to focus on what I can do, rather than what I can't do. Maybe it's because it's just so personal. Maybe it's because this one page is forcing me to be honest with myself about the limitations and misery we tolerate.
Yeah, I think that's probably it. It's not that I deny being sick. But I try to deny the magnitude of its negative impact.
To look at me is to see someone who's fine. Sometimes I'm a little green, but really, I'd say, I just look normal. I don't look like I used to, but otherwise unremarkable.
I'd like to say that I manage my tasks based on how I feel, but I know that's not true. I have learned to incorporate the symptoms of my disease into my day. I am a better actor today than a year ago, for sure. I fake it. If I look normal, shouldn't my life be normal?
I pretend that it doesn't bother me to have an IV pole and pump in my room. A tower of supplies, syringes and saline. The alcohol in the dining room is in swabs, not bottles. Medication bags in the vegetable crisper. Of course, I prefer being treated at home, rather than in hospital. I'm grateful to have at least that much independence. Receiving Home PN puts limitations on our lifestyle, but is less restrictive to our lives. It's all relative.
It's the gastroparesis that interferes. The fact that sometimes I must excuse myself, throw up, then go back to what I was doing. There's no delicate way to put it. That's what happens. Now you know.
It makes other people uncomfortable that I don't eat. Not in here, our home, the four of us; but out there in the world where the community reveres food. Food is social.
Our quality of life is continually challenged. Physically, socially, emotionally. If I know that I need to be 'well' for a specific event, then I work to be that. I will organize my day around infusing medication at just the right time to have the maximum effect. I do what I can to minimize the opportunities that might aggravate the symptoms from gastroparesis. Sometimes that works.
I have very limited control over feeling worse, and no power to feel better.
Just makes it more ridiculous that a gastric pacemaker is not an available treatment for me. For 8 years, we didn't play this game of Survivor. The pacemaker controlled the symptoms of my gastroparesis.
With conscious effort I steer myself, my body, and my emotions through each day. And when you ask, I'll tell you that I'm fine.
October 27, 2006
Living With Gastroparesis Isn't Really Living At All
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3 comments:
wow, i have been diagnosed with gastroparesis about a month ago. i was very sick for a long time, and been to many doctors. at first they told me that it was all in my head and that there was nothing wrong with me, i was just too nervous. i wasnt happy with that answer because i didnt feel i was nervous, i was just feeling sick. i finally went to a doctor that said that my gallbladder was working at 16% so i had that removed, didnt help. Then i seen a gastro doctor, he ran lots of tests to finally find that i had gastroparesis. Some days i feel pretty good, and some days i cant leave my bedroom. Theyve put me on alot of different medications with no positive results. Alot of the medications they put me on are antidepressants, which dont do anything really. Tryed the stomach emptying medications, and are not working. Wish there was something else we could do that would have positive results, dont know if you have found anything that works, i will watch this page to find out, thanks!!
Sometimes when a doctor isn't able to provide a diagnosis by science (often through lack of testing facilities and specialized knowledge), he/she blames the patient. It's unfortunate, but it usually represents his own frustration, not a personal attack.
Another use for antidepressants is to treat pain. Neuropathies and pain are consistent with GP.
It may take 4 -5 weeks until each antidep. can be evaluated. Patients with various types/sources of pain respond well to antidepressant use.
It's drug combinations that are used to manage the symptoms of GP. It takes discipline with your meds to maintain good symptom control.
GP is variable - manage your tasks to match how you feel. It also aids in symptom control.
Healthy lifestyle choices are a necessity.
Individual cases of GP range from mild to severe; some patients manage their nutrition without ever requiring supplemental feeding tubes.
There are links in the right sidebar to results of some clinical testing new pharma under investigation.
By the way, gall bladder dysfunction is often seen in patients with GP.
Best,
For what it's worth, I have a co-worker who suffers from it. I found several interesting treatments with few side effects. Actually, smoking pot has been shown to help, and has almost no side effects. The other treatment is oxytocin. google it.
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