Tuesday, August 21, 2012
One is the Loneliest Number by Guest Blogger Ashley Sellner
My family will tell you that I have always been a Beatles fan. Paul McCartney puts on the best show ever and I have had the wonderfully opportunity to see him twice. It wasn’t until March 2012 that this song really hit home for me. At 23 years old, I was diagnosed with Gastroparesis.
Since 2008 I have been seeing a Gastroenterologist because I was having a lot of pain, losing weight, and running to the bathroom several times per day. I was 19 when I had my first colonoscopy…Turns out that I had symptoms similar to Crohn’s disease, but I do not have the actual disease. I remember I was so excited to not have a lifelong disease that had no cure and made me sick. All my sickness did was cause random infections every 6-8 months with high fevers and the occasional trip to the hospital. Back in March of this year I went to see my GI doctor again because I was getting sick and was nauseous constantly. He did some blood work and decided I needed another colonoscopy. Biopsies were done, Crohn’s was tested, and I was negative again. After going for another test, a gastric emptying study, I was told that I had Gastroparesis. I had no clue what this was and spent the several days leading up to my appointment researching this condition. All that excitement over not having Crohn’s only to find out I now had an incurable, irreversible, untreatable condition where food is my enemy.
I have always tried to be healthy. I exercise regularly, eat healthy, and was actually vegetarian before I was diagnosed. As a vegetarian I ate lots of salads, fruits, veggies; the typical stuff you think of when you think vegetarian. Well, with Gastroparesis comes the long list of foods that have to be avoided, or modified, in order to be consumed. Raw fruits and veggies, salads, OUT! Long gone are my days of eating salads (way too hard to digest), and the only raw fruit I can eat are bananas. If I want fruits or vegetables I have to juice them or resort to eating baby food.
I didn’t take my diagnosis very seriously at first because all I was experiencing was a little constant nausea, which my doctor gave me medication for. I LOVE running so I started training for a half marathon and was so excited that I could train even though I was technically ‘sick’. I was registered to run a half marathon on August 11th, 2012. As the weeks of training went by I noticed I was getting sicker and sicker and couldn’t run as much on some days and I just kept getting more behind in my training. But I hadn’t given up, I was going to decide the day before the race if I would try to run the 13.1 miles or not. I wish I could say that I overcame everything and was able to do it, but I wasn’t.
Instead we went to a surprise birthday party for an Aunt and I was so excited to go. My husband and I went to his parents’ house and were able to stay for about 2 hours before I started getting really sick. I hadn’t been able to eat much and was down 10lbs in 10 days. I was shaky, nauseous, dizzy, and was having random twitching. August 11th was now marked as the first day I had to go to the emergency room with complications from my Gastroparesis. Turns out my blood pressure was about 100/45, and my potassium and magnesium were low. I was twitching so badly that they gave me valium to stop it and after about another hour, and some potassium and magnesium, I was able to go home…we missed the whole party. Two days later was the first time I vomited with my condition. I used to get so full and bloated I wished I could throw up. Now I’m praying I don’t because that will mean I’m progressing even more. Now I’m afraid to even eat.
My friends and family have been concerned because in the 5 months since I was diagnosed I have done nothing but try to take better care of myself only to get worse. I am able to eat less and less, and have days where I can’t even drink water without getting sick. I’m on three different medications, all used to treat SYMPTOMS, because there is no cure. I have no hope of my stomach ever returning to normal. I’ve had to accept that my life now IS my new normal.
My friends and family try to be supportive, and I love them so much for it. But even they will tell you that they can only be so supportive of something that they don’t understand. My husband is affected the most; I was diagnosed right after our one year wedding anniversary. Everything is a tradeoff for me. I’ve been wanting to go to DC for a while and he offered to take me one weekend since we had a wedding that day but it wasn’t until 4pm. Now with DC being a 45 minute drive and the wedding not being until 4pm you’d think you could go right? WRONG! With gastroparesis you’ll be lucky if you feel well enough to even go to the wedding, let alone spend all your energy walking around DC before it.
The current treatment options open to me right now are feeding tubes and/or a gastric pacemaker. The feeding tube is probably out since, according to my blood work, even though I only eat 500 calories some days, I am still managing to give my body what it needs to stay healthy. The gastric pacemaker has a 50/50 chance of working, and if it doesn’t work, I may still need the feeding tube in the future. I have an appointment at John’s Hopkins at the end of the month and I am hoping for more options, but we’ll see.
Gastroparesis has taken my health, my energy, my running, my quality of life, and so much more from me. Ever try to go out to eat with friends and force yourself to eat, even though you’re not feeling well, to avoid conversations always turning to you and your illness?
Since I was diagnosed, I live in a world where I try to be grateful for everything. I have a lot of faith in God. His strength is made perfect in my weakness and His grace is sufficient. When I have bad days I pray for good days, and when I have good days I praise God for them. I try not to get frustrated with friends who keep telling me about random things I should try to get better. I try to comfort the waiter who thinks the food is bad because it looks like I didn’t eat anything. I try to be grateful that everyone’s conversation with me starts with “how are you feeling”, instead of being mad that they even have to ask. I live in a world where I am faithful, and I try. I have no option other than to try. I have to stay positive, I have to try. Giving up would mean losing the cheery, bubbly, loving person that I am…and I refuse to let Gastroparesis take that from me.