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My name is Tess.
I’m 27 years old and I love life, I really do. Everything about it – people, animals, my pets, our beautiful surroundings, even my mind, and body… of which my body is pretty defective.
When I was 15 years old I hit puberty and my life was shaken up. I always had digestive problems, but I went from 150 lbs to 115 and I looked pregnant most of the time. My abdomen was so bloated and distended. and I was sick every morning. Throwing up the food I ate the day before or dry heaving bile for hours on end. I became scared of food and the pain was just unbearable.
After 6 hospitals and 30 doctors, I was finally sent to Boston Children’s Hospital where I stayed for 2 weeks of testing by Dr. Samuel Nurko. I was diagnosed with gastroparesis (delayed stomach emptying), and global motility disorder affecting my entire digestive system. And the worst chronic pseudo-intestinal obstruction.
I was sent on my way with medication, the only thing they had to offer me at the time, and no other guidance besides follow a very strict, weird diet. No fiber, no carbs, no veggies. I was warned to be aware of obstruction, and the hard future of surgeries was put on the table.
Every year my symptoms got worse, with my digestive system slowing down even more. Blockages and obstructions became way more frequent. I couldn’t live my daily life, I was vomiting bile about 20 times a day. I kept ending up in the ER with bowel obstructions at 20 years old!
I ended up going to another G.I doctor in Manhattan, who pointed out how I kept stretching my finger back and bending my joints in strange ways. He put my slow gut and weird joints together and I was given my diagnosis of Ehlers-Danlos syndrome (EDS).
It had been causing me to suffer from dislocations of my joints, and it contributed to causing early-onset osteoporosis, osteoarthritis, mitral valve prolapse, severe GI motility issues, postural orthostatic tachycardia syndrome, cervical instability, herniated discs, scoliosis, fibromyalgia, epilepsy, bladder dysmotility, malabsorption, and short bowel syndrome due to surgeries.
Before my surgeries I was taking 22 pills a day to help my intestine move – after surgery, I went down to 5 a day. I have never been on any pain medicine, yet I have gone into shock from this pain. It could absorb me, it could consume me. But all these diagnoses, all these gene mutations – they are not me. I am so much stronger than this! I am this energy, this soul that burns bright, and I will never give up.
I am thankful for every day, every breath; all the pain, the issues, the surgeries made me who I am. They made me so strong, a force to be reckoned with. A fighter, a survivor, a warrior. I will never give up, never not fight for my life and for what I love. Yoga has given me the tools, given me this peace. Just to listen to the breath and be here in every moment. To accept all that is and all that will be. To be at peace, and listen to the inhale and exhale.
There is no cure for me, no easy fix, no way around these blockages, no diet that can cure me. No magical pill or supplement. But what saves me every day is my will! I’ll never give up, I’ll never let this illness win! The power of positive thought and intention can change your life. Love for every breath and every moment.
This life I have lived; daily pain, having a hard time eating, not being able to enjoy college and being free like a normal person, missing out on my full potential some may say. But to me, I think this is my path to never let these ailments take me. To become so strong I can share this strength.Tags: Ehlers-Danlos syndrome, Ehlers-Danlos syndromes, GI, movement, Pain, surgery
Categorized in: Stories