Gastroparesis Doesn't Define Me- A Dancer's Dream to Overcome an Invisible Disease
by Amanda Singer
(Plymouth, MA USA)
It started with symptoms of upset stomach, bowel issues, & acid refux. For over 8 years, I battled an Eating Disorder, but at the time, didn't directly correlate the problems, as I had been in a steady recovery for 2 years.
Eventually, I looked for help from a GI. Unfortunately, the 1st and 2nd specialists I saw both brushed me off. First I was labeled with "IBS" or the "bull-crap" dx, & my 2nd GI told me she thought it was GP, but there was no sense in running proper tests, as there wasn't much she could do to help me. As you can imagine, this left me feeling very defeated.
Over a year later, after months of working with my nutritionist on changing my diet, & taking herbal remedies, my symptoms reared their ugly head again. This time, it started with lack of appetite, which of course sent my tx team into a frenzy, thinking I was relapsing into my Eating Disorder. I tried desperately to convince everyone that something else was very wrong, as my symptoms worsened, and shifted. In just a few short months, I dropped over 30lbs, and became incredibly ill.
In Sept, I finally reached out to a GI dept head at a reputable hospital in Boston. My 1st appt was spent in tears, presenting 4 months worth of files from my PCP, nutrition notes, food journals, a timeline, & begging for help. This GI, immediately ran every test under the sun, & scheduled an endoscopy & gastric emptying. Low and behold, these tests were conclusive as thought, & Gastroparesis (GP) was the dx! The good news was this GI finally shed some light giving me hope that although there was no cure, there were ways to manage the illness.
From my initial dx, through today, it has been a whirlwhind of doctor's visits, testing, & hospital stays. I had 3 ER visits, & an urgent visit to my GI within the first 3 weeks. I was directly admitted to the hospital my GI works out of, for what they thought would only be a few short days to get me stabilized.
My admission lasted 8 days, & would have been longer, but I insisted on being home for the holidays. After day 3, an NJ was dropped. I have never been so thankful to have a tube up my nose! My NJ was a way to replenish all that was lost, rebuild my strength, give my stomach a much needed rest, & try med management.
As excited as I was to finally go home, it was very scary. I had appts with all my team members lined up practically back-to-back for the following 2 weeks, a visiting nurse, & had to rely on myself to keep my tube feeds going. To top it all off, I had 5 college courses on my plate, a hairdressing job, & a dance instructing job with our annual Nutcracker performance only 2 weeks away. Although I felt 10 times better than before going into the hospital, I was still very weak and out of shape.
Back at school, It was akward at first, I was self-concious of the tube across my face and my back pack alarming, but after awhile, it became second nature. I returned to both the salon and the dance studio,& many of the little "old" lady clients were not afraid to speak their mind. A regular roller set customer said very loudly to another stylist "What is that on her face? Some sort of crazy jewelry kids wear these days?" As you can imagine, I was mortified at the time. Many other clients just stared, some were brave enough to ask.
It felt good to be able to spread awareness. Over time, I realized both in and out of the salon, that's exactly what I was doing, spreading awareness of this silent disease. It gave me a feeling of importance, confidence, and made things easier to cope with.
At the studio, I found myself frustrated. As each day went by, even with slight progression with my feeds and even oral intake, I was still depleted & didn't feel like myself. With the knowledge of our Nutcracker approaching looming over me, I grew nervous. Not only was I teaching my regular classes, but I was running rehearsals, & I was performing myself. When I was released from the hospital, I had missed two crucial rehearsals with my partner, plus extra practice time, & had to make up for it with a body that didn't want to do much moving.
I don't know how I got through it all, but perhaps the smiling faces, the hugs, & the concerned parents so glad to see me back made me push just enough. There had been a pregnancy rumor spreading since I had left, after 2 episodes of running to the bathroom to vomit during class, so as you can imagine, I was relieved to get the truth spread! Children are so incredibly honest. They have no censor. In a situation like mine, I think it can teach us as adults important life lessons. For example, instead of just staring at a person for looking "different", ask them WHY they look that way. My kiddos were so fascinated by the "thing" hanging out of my nose, & the inside of my back pack. Although my youngest kids couldn't fully grasp the idea of it, again, I knew I was educating..
Nutcracker itself was tough to get through. After all rehearsals, & 3 days of shows, I felt like I was going to collapse. With the help of teacher friends, my partner, & my understanding bosses, I managed to grace the stage with my flawless presence (well, with the exception of getting my dress caught on my shoe). Overall, it was a blast, & I'm hoping for next year, to be able to perform without a tube, & healthier.
Currently, I still have an NJ, & am wondering if a transition to another form of tube is in store. With the meds I'm taking, along with my stomach rested, I have made significant progress, but it has been very slow, & I feel I am at a stand-still. Without enough formula, I cannot sustain a healthy body or mind. I have fears for the future, but I’m also positive that I will find the right tx, & as long as I keep my faith & find a happy balance between rest, work, & the things I love, I can find serenity with this disease.
GP has taken away time, wellness, & has forced me to SLOW DOWN. However, it has given me perspective, new & inspiring friends, time to reflect, the realization of just how precious our bodies are, how crucial it is to connect body, mind, & spirit, & how I as an individual can make a huge difference with each person I speak to, or with each blog I post.
Since my dx, I have been blessed to enjoy Thanksgiving, "ChristmaHannukah", & New Years with family. I took a trip to CT to visit a dear friend & have a much needed get-away, spend quality time with my siblings, see my grandmother overcome a 3rd battle with cancer, speak to my dance studio's co. members about the dangers of ED’s & the ramifications, & so much more.
Many people see GP as purely a burden, & some mornings you just don't want to get out of bed and face the day. However, it's on those days, that it's vital to push yourself to do so; we are so incredibly lucky to be here, living, & getting to participate in life. As hard as it can be, with each obstacle that's thrown your way, it could be so much harder, & we should live each moment fully; beautifully, humbly, joyfully.
I hope one day there will be a cure. Until then, I will keep fighting, & doing the things I love, like my passion for dancing, until I no longer can. Yesterday, I put my pointe shoes back on for the very first time in 6 months. I knew I wouldn't be able to do a whole lot, as my muscle has dwindled down to so little, but I had a feeling of empowerment & drive, & decided to give it a try. For 15 minutes, I could stand against a pole in my basement & work on releves, plies, piques, & the basics. It was a blissful moment, I felt happier than I have been in a long time, & so thankful. Thankful for the ability to just keep on dancing...