I have a disease called gastroparesis. I lost 2/3 of my stomach on July 21, 2012. I. Spent many months in the hospital until I was "stabilized" and have since learned how to deal with this disease. It is very much like dealing with other diseases like fibermyalgia or some other disease that many dr.s don't understand.
I have a g/j feeding tube that has to be changed out every three months by the Interventional radiologist at Shands Medical Center in Gainsville, Fl (a 300 miles round trip). I have constant dehydration because I cannot process water or liquids. I do not have hunger sensations nor do I get thirsty. (Which adds different problems such as remembering to eat during the day). I have an awesome office who have become my stomachs and remind me when they are hunger that I need to eat. I have issues related to this such as Sjögren's syndrome (is where my white blood cells are attacking all my moisture producing glades -very dry eyes, dry mouth, etc.) and fainting syncope (which happens shortly after getting up in the morning and getting ready for work) but this can happen anytime during the day. Some days I am nausea and can't function without my nausea medicine and other days I have more energy to run circles around you. I cannot exercise like everyone else because strenuous exercise is worse for gastroparesis. I cannot run due to lack of water and walking is hard on my muscles as well.
I work full time in an office and I take care of my husband who has medical issues as well. I am learning how to roll with my days and learn how to be very positive towards life. I have two adult children - one is 23 and lives at home, the other one is away at college in his last semester of college. I can do anything that I set my mind to and I have decided that 2014 is going to be a year of change for me.
Some of my goals for this year include:
1. Drinking more fluids by mouth so that I can have the g/j tube removed. Goals by dr is that if I can consume the recommended amount of water during the day she will remove the tube. I currently need between 70 to 100 ounces of water a day. Currently I consume no more 12 ounces over the entire day. I take in 32 ounces through my tube but that gets processed differently and doesn't help much.
2. I want to find an exercise program that I can do with all of my issues. I would love to take up karate. As well as riding my bike.
3. I have some personal goals that I am going to accomplish such as getting my notary and working as a real estate signing agent; taking and passing the paralegal exam to become a certified paralegal; and starting a business of organization and helping people get their homes organized.
4. My last and final goals for 2014 is to watch Stephen graduate from college and Eli be successful in his life by finding a career that makes him happy.
I will walk through this disease but I refuse to allow it to take what makes me happy!
Dawn
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