Growing up I battled Gastroparesis symptoms without knowing the name for what I was fighting and only knew of one other person fighting the same set of extreme symptoms, my grandmother. My entire life was spent comparing symptoms and modeling my eating after my grandma. My childhood doctor didn’t know of Gastroparesis (not many did back then), but knew I had the “Millie” issue. My grandma and I share our name, practically share our birthdays and apparently share the same gut issues. This is why he called it the “Millie” issue.
I remember spending at least a week in the hospital during third grade. There were lots of blood draws, nurses, and doctor’s visits. My doctor was one of the founders of the local hospital and as such I was in the penthouse (aka a private room at the end of a hall). I made items for the nurses and ordered Popsicles for my visitors. However, no one knew what to do for me.
Then in my junior year of high school I had my first endoscopy. I remember my grandma telling me what to expect and that it would be okay. I had no one else to talk to about this. Even though I was having so many issues I stayed extremely active in school. I ran cross country, acted in plays, marched in the marching band, sang in the choir, studied my way into National Honors Society, and spent a fair deal of time cruising around with my friends. Little did I know that staying activity might have helped me prolong the seriousness of Gastroparesis (more on this in future blogs).
In college, I had to make friends who had cars so that if I needed to go to the emergency room, I knew that I could get there. I remember a few instances in college where I was vomiting so badly that I had to be driven to the ER while my friends sat there in shock of what was happening to me. Again, I had no name to tell them, I had no idea what was happening to me other than that this was “normal”. I had no one to talk to except my grandma. Thank goodness for her! It was always comforting to know that she was fighting the same mystery issue and was not slowing down one bit!
After college I had another endoscopy and my first gastric emptying study where I literally got to eat radioactive eggs and drank radioactive orange juice (more on this in future blogs). The test results were inconclusive and I still only had one person to compare notes with. (Although my grandma has never had the pleasure of a radioactive breakfast!)
Now I have moved further into my adult life, had another endoscopy and another gastric emptying study, except this time I had a name of what I was fighting: Gastroparesis. As dim as a Gastroparesis diagnosis can be, it is also extremely uplifting. FINALLY I was no longer on an island with my grandma. FINALLY I was able to interact with more people. FINALLY I was able to share stories of fighting with doctors. FINALLY I was able to share stories of feeling like a lab rat. FINALLY I was able to share the feelings that come along with knowing your life is changing in a dramatic way. FINALLY I was able to share in all of the ups and downs, left turns and right turns, expanding and contracting stomachs.
Needless to say, it is an emotional roller coaster to after 30 years of being on an island to have a support group. This weekend I met many people from this support group in person. Words cannot express what it is like to be surrounded by a group of people fighting the same fight. It is extremely rare to spend a day with someone that is dealing with all of the cramping, vomiting, and smoothie making. It is even rarer to spend a weekend with an entire group. It is an extremely emotional experience. An experience that is life changing. An experience that has put more fight in me than Muhammad Ali or Joe Frasier. So watch out world, this GP Sister is about to take the world by storm and leave that island in the dust.
Grandma, we are no longer on an island and I’m going to fight so hard with all of these amazing people so that others will not have to live with all of the sickness that GPers battle. I love you!