Caroline's Gastroparesis Fund
As a lot of you know, my health has been in a pretty rapid decline over the past several years. I have felt unwell for over a decade, but in the last year I have lost 40 pounds, the ability to eat, and a lot of hope.
After years and years of being told by doctors that there was nothing wrong with me, I was finally diagnosed early three years ago with gastroparesis and bowel motility issues. What this means, in a nutshell, is that my stomach and intestines are paralyzed, and can't move food through the way they should. Anything I ingest sits in my stomach for hours (and often days), and there is little relief when it finally does leave my stomach, because my whole digestive tract moves so slowly. This causes constant pain, nausea, and general discomfort, along with vomiting, dehydration, and malnutrition. Right now I am on a completely liquid diet (meal replacement drinks, juices, and broth), and am struggling to get in 600 or 700 calories a day. The lack of nutrition makes me super tired and foggy, and most of the time it's hard to get out of bed, let alone work a full time job and take care of day to day tasks.
There is no cure for gastroparesis, and the treatments are often dangerous and mostly ineffective. This is something I will most likely have to live with for the rest of my life. I probably won't ever be able to sit down to a regular meal (or even a regular snack, haha!) again; I probably won't ever be able to live a "normal" life. The days where I don't feel ill and in pain will probably be few and far between.
Over the past few years, I have slowly gotten buried in medical bills. I didn't have insurance for a quite a while, and I had to make trips to the emergency room and get a lot of testing done that I could not pay for. Even in the time that I HAVE had insurance, I've tacked on another several thousand dollars in tests, doctor's fees, and uncovered prescriptions, and the bills continue to grow.
At this point, there are out of state specialists I would like to see, and options I would like to explore as far as treatment goes, but I have run very low on money and I am scared to push myself deeper into medical debt. Some of the more promising treatments I would like to try (certain medications, acupuncture, Chinese medicine, naturopathy) are not covered by health insurance, and others (gastric bypass surgery, feeding tubes as a last resort) are, but would still be incredibly expensive.
I've often felt ready to give up during this past year, and sometimes it's hard to keep fighting when you know that there is not going to be any magic cure, that I'm not going to be able to find the right doctor, the right medication, the right procedure to make it go away. I do have hope, however, that there are treatments out there that could help me a great deal, or at least improve my quality of life.
Any donation would mean the world to me, and help me get my world a little closer to normal. Much love to all of you, and thanks for being there. <3
Quick update. I'm doing pretty well lately. I've been having less sick days and more days where I feel good. I'm still on all liquids, which poses its own set of problems, haha. I'm hungry alwayyysss, and sometimes at night I sleep walk, eat food, and get super sick either right then, or later on if I get back to bed without waking up. Kinda funny, in a way, but it makes me feel like crap for a long time. I've been trying to work on that on my own and with my therapist.
I wanted to mention that I'm still selling prints of my paintings! They're 45 dollars shipped. You can take a look at them here, if you're on facebook. The top 6 are the ones I have prints of. :)
Thank you all, and love to you!
My son was diagnosed 3 years ago and for years before was in so much pain. Boston Childrens has done wonders for him. He is on Periactin. If you have not tried it, ask about it. It is a motility and appetite stimulant and in 3 years he went from 55 pounds to now 108. He is thriving. I hope you will look into this and are able to find relief. Best to you.
Thank you for your updates, Caroline. Good luck! Hoping 2017 will be a great year for you!
I have this same disease. I was so close to giving up after countless doctors could offer no relief. But I finally found a medication that worked for me. It is legal in 33 counties and helps millions of people with gastroparesis (I isn't fda approved and probably won't be until 2018). Resolor (prucalopride) gave me my life back. Maybe it could work for you too. Or someone reading this comment! Good luck. And feel better!
I have this same disease. I am was so close away from giving up after countless doctors could offer me no relief from my constant suffering.
Hi, I know exaxtly how you feel. I also have the same thing. In and out of the hospital, being careful what I eat. Resting a lot and very upset the Doctors have no answers for how miserable I feel. When I have the horrid pain it is un-explainable. So hun you aren't alone. Wish I could help you, but I am having problems just getting me together./
I'm living with the same problem. Have been for almost 29 years. Good luck sug! I wish I could help with funding. Try the gastric research foundation in Colorado for help.