Hello PACTBLOG readers,
I’m Proud of What I’ve Overcome as I Cope With Digestive Tract Paralysis
Wheeling down the hallway, I gasp upon seeing the image of a frail young girl with graying skin whose muscles are wasting away from her tall, yet disappearing frame, but the reflection in the mirror is mine.
Fingernails and toenails are missing. Clumps of hair fill my bony hands after gently sweeping hair away from my gaunt face. Long gone is my slender yet strong body with defined muscles from being a dedicated runner and dancer before unintentionally losing 30 plus pounds from gastroparesis (GP) or “stomach paralysis” and intestinal dysmotility, which are forms of digestive tract paralysis (DTP) that greatly slow or prevent food and liquids from moving through the gastrointestinal tract.
For some, the cause is idiopathic (unknown), but mine arose from mitochondrial disease along with severe cases of numerous incurable and agonizingly painful illnesses, including full body reflex sympathetic dystrophy syndrome (RSD) and postural orthostatic tachycardia syndrome (POTS). These conditions leave me not only fighting to thrive, but to survive.
Prior to eliminating solid foods, one bite induced episodes of violent vomiting with a fiery burn, which inadvertently dislocated my jaw. Nausea is incessant, shooting pains attack my intestines and the feeling of jagged rocks shredding my stomach is unremitting, making the most foreboding flu seem like child’s play.
Spasms steal my breath, one sip of water triggers excessive distention along with early satiety (feeling full fast) and exorbitant amounts of prescription laxatives fail to help the painful monthly bowel movements. Malnutrition is as rampant as weight fluctuation, gastroesophageal reflux disease (GERD), glucose abnormalities, blood disorders and osteoporosis.
Since the worsening of DTP and associated diseases, I’ve acquired 85 plus hospital bracelets. Lines have malfunctioned, fallen out, contributed to blood clots in my lungs and destroyed my already fragile veins by filling them with occlusions. Like a scene from “Grey’s Anatomy,” medical teams have frantically surrounded me as my vitals crashed to 60/20 with an irregular heartbeat, narrowly missing a heart attack on the way to the ICU. These life-threatening situations are routine along with critical lab values, depletion of electrolytes, 25 plus blood transfusions, fevers surpassing 105 and 15 plus cases of severe sepsis, making an ethanol locked silicone Hickman port imperative.
Holidays, traditions and gatherings often revolve around food, uniting family and friends and creating lifelong memories. But it makes things difficult for those with DTP. Bid food farewell for there are no smoothies to mix as fresh produce is nixed, no Thanksgiving dinner, warm meals in winter, birthday cake, Christmas cookies to bake and forget New Year’s toasts and the foods you miss most.
Years have passed since I have visited a friend’s house, went on a date, drove a car, traveled for pleasure, spent a day alone and had a meal with solid foods. Being this medically fragile with an unstable body, I require tremendous assistance with activities of daily living, so my mom has selflessly chosen to be my full-time caregiver.
This may be a small piece of my story, but sadly, mine is not the only one to tell. Dear friends of mine also courageously battle chronic illnesses, but tragically, my beautiful soul sister, who never lost her faith, lost her life due to the same diseases I endure.
Despite ridicule, bullying and condescension from several others, I remain proud of who I am and what I’ve overcome. Lines, tubes and scars are my badges of courage, hope and faith, creating roadmaps of the past as I move forward dreaming of the future.
Every day I’m happily reminded of God’s wondrous blessings, and I’m ever thankful for the countless miracles that continue to keep my mind, body and soul alive.
If you have a story you would like to tell, or if you’re an organization that shares the mission to raise awareness for those who live with digestive tract paralysis email our Newsletter Editor at firstname.lastname@example.org