3 years ago, I embarked on a journey unlike anything I could have ever imagined. I have gone from a strong, independent nurse, wife, and mother to a shell of a person barely able to get up and go each day…to the “new me” – A good person, dealt a bad hand, and doing her best to live each day to its fullest.
My tummy story started in the spring of 2009. I was having some issues with nausea and indigestion that was initially brushed off as “probably an ulcer”. From there I began to have chest pain/pressure, heartburn, and severe nausea. Nothing I did seemed to have much of an effect. Over a 6 month period, I would return to my doctor 3 times with these complaints. I was given a variety of diagnoses, from pleurisy to GERD, but none of the treatments helped. I developed pain in my side and back, and started to notice feeling full quickly no matter what I ate. Previously a REAL foodie, and a little overweight at 150 pounds, my diet dwindled to mainly cereal and toast.
I changed primary care doctors and went to 2 GI practices looking for answers. It took 12 more months, 2 trips to the ER, 6 procedures, 6 medications, over $8000 out of pocket, more calls to argue with my insurance company than I care to remember, and countless hours on the internet searching for answers before someone FINALLY ordered a gastric emptying study (at my request) and diagnosed my gastroparesis.
Though I had the diagnosis, there was little guidance on how to live with it. I was given a hand out of some foods to avoid, and the doctor told me “it won’t kill you, but some days you’ll wish you were dead.” I remember thinking that was the most insensitive thing I’d ever heard! Every day was exhausting. I had to take multiple breaks just to get ready each morning. I was nauseated, dizzy, and barely making it through each day. Looking back, there were very few days I didn’t cry, and it turns out that doctor was right.
I hit a low of 100 pounds in January 2011, and faced hard choices regarding my nutritional status (such as feeding tubes/IV nutritional support). Everywhere I went, people whispered about why I wasn’t eating or why I had lost so much weight. We live in a small town, and the rumor mill had given me everything from an eating disorder to cancer. And worse yet, other people would tell me how great I looked and ask what I was doing to lose so much weight.
Physically and emotionally, I was worn out and struggling to find help. It has been a long road. To date I have tried 12 prescription meds: some with FDA blackbox warnings, some that needed compounded because they aren’t available here otherwise, and many of which aren’t covered by insurance because they aren’t “proven” treatments. Most importantly, I’ve learned the importance of being my own advocate and doing my own research.
It is VERY hard to find a practitioner that has real experience with treating gastroparesis patients. Through trial and error, and networking other GPers, I have learned to battle my symptoms and my food intake to avoid the severe dehydration and malnourishment. I am happy to say I have gained around 7-8 pounds and am able to maintain it fairly well. And I continue to read, study, and search for ideas to help manage my condition so that I can live better. But while I have done well with learning to deal with my physical health, I am still fighting quite a psychological battle.
My life changed drastically. I hate talking about my illness, because that makes it real to me. But hiding from the facts only makes things worse. I’m not the old me but accepting that has been so hard. I love to and live to cook. But FOOD network just isn’t the same when you can only dream of tasting all of those recipes. Planning ANYTHING is terribly stressful – never know if it will be a good tummy day or a bad one. And hearing my kids say, “don’t ask mom, she doesn’t feel good. “ or “mom, you just rest, dad can help us” just cuts deep.
My whole identity has changed. I can honestly say I don’t think there is one aspect of my life, not one, that hasn’t been effected by gastroparesis. I’m lucky in that I have an amazing family that supports me, and as my husband points out, I am just hard headed enough to not let anything beat me. But this journey is not for the faint of heart. I wake up every day after dreaming of eating, feeling good, and being healthy. And then I take my anti-nausea medication and head off to shower, hoping it kicks in soon. I have a life to live, and I am determined to make it a great one!