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 and could use all the positive thoughts that it will be successful. This has to work because there aren’t really any other good options left. My doctor basically told me that my choices might be between using opiates, which would likely cause a dependence and may end up hospitalizing me bc I’m unlikely to tolerate withdrawal safely, or TPN, nutrition through my veins, which has a high risk of blood or heart infections, severe organ damage and sepsis. There should be better options. I’m only 34.
My situation isn’t unique among people with gastroparesis. And without a cure or funding, we will continue to be treated like drug seekers, or accused of having an eating disorder, or told we need to be more positive, or told we just need a therapist bc we’re “too young and sweet” to have a feeding tube, or refused care because we “seem healthy” despite how awful we feel from prolonged starvation (I have been told all of these things by doctors). We deserve respect from the medical community, to be taken seriously, and to have real options and care for a better life.
After over a year of hard work, our House Bill for GP Awareness only has 22 co-sponsers out of 435. Please, please help by supporting our bill. It will give us the awareness and funding we need to live. Please help save lives.