Faces of GP

It’s August 1st, which means it’s the start of Gastroparesis Awareness Month. I’m now 1 year and 9 months into my journey, and it’s been a harder year than I ever expected (and that is after losing 60lbs my first year). In the last year, I’ve had to go on leave from teaching, had 5 feeding tube exchanges, been hospitalized 23 days total, and had too many blood draws, IVs for hydration, doctor appointments, procedures, and ER visits to count. (Not to mention trying to parent and homeschool during a pandemic through all of this). The last two months have been the hardest of my life, with a new flare that will not end and is keeping even my feeding tube from working properly. I’ve lost the 15 lbs I had managed to regain in the fall, plus an additional 8, making my loss 23 lbs in less than two months. I will likely keep losing weight while we figure out a solution and am now getting close to being underweight. I have a big procedure this Wednesday which might be my chance at finally feeling better

I am asking my legislator to support this bill on behalf of myself and the many other Gastroparesis Warriors across this country who fight Gastroparesis and it’s debilitating symptoms on a daily basis. Gastroparesis, or paralysis of the stomach is a rare disease that affects only a small percent of the U.S population and not many more than that worldwide. I was officially diagnosed with Gastroparesis in January of 2019 after enduring symptoms of the disease for more than seven years. Because Gastroparesis is considered a rare illness, knowledge of it is severely limited. Many people, including myself go misdiagnosed for many years before being officially diagnosed with the disease. Many doctors have never even heard the term Gastroparesis, let alone it’s life altering symptoms. This disease does not only go misunderstood in the physician community but also with our families, friends, co-workers, and bosses. Because Gastroparesis is on the inside, often times we may look ok on the outside leading to ridicule and judgement from other’s. We may look ok on the outside, bet are literally starving on the inside. We may look ok to others

I was diagnosed when I was forty years old. They removed my large intestine, gallbladder and appendix. I lost my hearing, my job, my friends and almost my marriage. This isn’t a easy illness on a family. It isn’t like cancer because it isn’t well known so people judge you. The worst part is not seeing my granddaughters because I am too tired and sick and weak all the time. I am 58 years old. I am very tired and at this moment I have pancreatitis acute. I am so sick of suffering.

January 21, 2018: What started off as a severe kidney infection (subsequently a diagnosis of Interstitial Cystitis), quickly became a much more serious issue. I started to lose some weight, was given several different antibiotics (all forms) as the infection was not going away, and then I started to not be able to get down or keep food in me. This went on for quite some time, developed C Diff (which complicated things even further), had a few tests done, found out I had Adrenal Insufficiency, and Hypothyroidism, and by April I had lost more than 30 pounds and was severely malnourished. During this time, I was continuously dismissed at the doctors office or the ER and told either that it was in my head, that I had an eating disorder and that I just needed to eat, or to come back next week and we will see what you weigh. April 12, 2018, I ended up in the hospital and was told that I was very lucky as I would not have made it much longer in the condition that I was in. At this point,

So a little over 2 years ago I was diagnosed with gastroparesis. Before that I kept getting told it was acid reflux or effects from having my gallbladder removed. After I got the diagnosis we tried erythromycin and diet changes. This worked for about a month until I went into a horrible flare and lost 40lbs in 6 weeks. When this happened my hometown gi decided to drop me and referred me to a digestive disorders dr. I had to wait 6 months to see him so during this time I had no help since my original gi refused to see me. I was originally going to get the gastric pacemaker from my new dr and even went through testing but Then he retired unexpectedly so I was sent to another dr in the same Practice. During this time I was throwing up almost everyday and constantly nauseous and with stomach pain. My new dr then tried me on multiple new meds lots of trial and error with no help as I react weird to a lot of meds. I ended up having to