How Mitochondrial Disease affects my body

My Mitochondrial Disease has been a slowly developing condition over the last twelve years. It started with general fatigue, then affected my autonomic nervous system and then progressed on to my muscles and other organs. It seems as I adjust to a set of symptoms, something else becomes affected. There is never a dull moment in trying to figure out how to live with Mitochondrial Disease.

One of the most affected areas of my body is my pancreas. Less than 10% of my pancreas functions, and I often have pancreatitis attacks. I have had a couple surgeries on my pancreas, which has helped lessen the pain and severity of flare-ups. In general, whenever I eat, I develop bad pain in my left shoulder and gut. It sometimes feels as though someone slammed me hard into a wall and kicked me in the gut. I also have significant cramping in my pancreas. My gut becomes very bloated, and I feel like I have swallowed a balloon. Most of the time, the symptoms pass in a few hours. Sometimes, I start to develop excruciating pain, fever, vomiting and diarrhea. These more severe attacks last between one and seven days. During this time, I can only drink small amounts of water or I re-start the flare-up all over again. I have greatly modified my diet because my pancreas produces very little insulin and digestive enzymes. I eat mostly vegetables, eggs and a little bit of fruit. Once every two weeks, I eat some chicken. Although it is a challenge, I am very thankful I can still eat and am able to eat enough to maintain an acceptable weight.

Other health challenges include:
GI Tract: Gastritis, gastroparesis, chronic intestinal pseudo-obstruction, Inflammatory Bowel Disease, Celiac Disease, superior mesenteric artery syndrome, bowel obstructions

Liver: Fatty liver, high liver enzymes, high bilirubin levels (jaundice)

Brain: Encephalopathy, strokes, stroke-like episodes, seizures, migraines, dizziness, Central Diabetes Insipidus, memory loss

Nervous System: Tingling in my hands and feet, difficulty swallowing episodes, Dysautonomia=lack of function in my sympathetic nervous system which leads to the following: hyperadrenergic  postural orthostatic tachycardia syndrome (rapid heart rate in an upright position with a massive increase in the fight or flight hormones epinephrine and norepinephrine), low body temperatures, inability to tolerate hot or cold temperatures, Raynaud's disorder (hands and feet becoming very cold and turning purple), wild swings in my blood pressure from very high (hypertension) to very low (hypotension)

Muscles: weakness, pain, paralysis episodes, dystonia episodes (very painful muscle cramping/spasming), unable to coordinate movement, temporal mandibular joint (TMJ) disorder

Immune System: Pancytopenia, Mast Cell Disease, eosinophilic esophagitis/gastroenteritis/colitis, severe allergies to many things, hives, eczema

Endocrine System: Diabetes Mellitus, low renin levels, low aldosterone levels

Cardio: Inappropriate sinus tachycardia, cardiomyopathy

Eyes: Double vision, ptosis, macular degeneration, Chronic Progressive External Opthalmoplegia (CPEO)

Ears: Sensorineural hearing loss, ringing in the ears, Meniere's Disease

Respiratory System: Shortness of breath, chronic coughing

General: FATIGUE!!! Back pain, neck pain, chest pain, joint pain (osteoarthritis)