Nobody is Listening

Basic Stuff

• Name: Dea
• Country: United States
• State: North Carolina
• City: Charlotte
• Gender: Female
• Age: 66
• Education: Masters Degree
• Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Irritable bowel syndrome
  • Migraine
  • Ehlers Danlos Syndrome (EDS)
  • Environmental Illness (EI)
  • Mast Cell Activation Syndrome (MCAS)
  • MixedConnectiveTissueDisorderMCTD Sjogren's RA/OA MultiChemSens Dysautonomia ChronicSinusitis
• Year Illness Began: 1995

Functioning Interrupted

Most Impactful Loss

Lost everything. Worst my daughter left middle school to care for me - crawling to bathroom. Happened LITERALLY overnight. Now 41 she still loves me thankfully.

My Story

Approaching 40 years of age I was 114 lb endurance athlete in perfect shape and health. Super flexible, resilient never gained a pound regardless of extra calories, I bounced no matter what - never broke. The first time I got a flu shot in my life was from my daughter's pediatrician the year that flu was killing fit young people, I had no reaction - this was in the winter, normal time for that vaccine. Nothing unusual. In May I suddenly fell ill overnight - LITERALLY OVER NIGHT. It felt like flu, clearly a virus, but severe. I could feel the viral load increasing hour by hour for the first day, then the next day, then every day for a week. I felt every cell of my body descending. I could barely stand, I could barely sit. I could barely breathe. I went to the infectious disease doc that we used for finger sticks in the office because I only had an OB/GYN, no need for primary care back then. Dr J checked my limp corpse over and did some labs. He found NOTHING. Said it was a virus, prescribed a course of antibiotic just to be safe and gave me an injection of steroids which did help. I went home to my hog wallow on the couch and stayed there for another week of going straight downhill with a fever that went straight up. I never run a fever even with the worst illnesses - ever. I went back to Dr J. More, different labs. My throat so sore I could barely swallow saliva - no I couldn't actually. Perfectly normal labs, nothing grew on any culture - cultured everything from head to toe. I really couldn't afford to be out of work - moneywise nor because there was nobody to take up my slack in private practice. Also I was the single mom of a middle schooler. I forced myself to eat a little and the only thing I could get down was a few tablespoons of orzo noodles with butter and some weak tea about once per day. I GAINED ABOUT 10 POUNDS the third week. Dr J kept me on antibiotics, tested for Lymes, Rocky Mtn Spotted, others insect borne illnesses - nothing. Organ functions all perfect. All tests normal. Nobody else around me was sick fortunately. My family of origin (all terminal degree licensed health care providers) was less than helpful - they were all freaking jerks actually. It was a long hot horrifying summer. I was getting sicker by the day, gaining about 10 lbs per week, eating nothing, turning red, running normal values, ruining my child's life and mine, going broke, and feeling both suicidal and somewhat vicious toward my genetic relatives. Fall came, my daughter started school but eventually withdrew - her decision in discussion with the school psychologist and guidance counselor (my child was already working at a university level so no learning lost but the fact that she had to care for me was not optimal.) I was unable to stay awake unless I was actively physically engaging myself in some task, almost unable to walk at all, drove with extreme difficulty, rarely went into the office - almost everybody in my life reacted with tremendous ANGER! and hatefulness. I knew that I was going to lose my home so I closed it up threw away most everything that wasn't immediately useful or keepsake and my daughter and I somehow moved everything into my Dad's house - he lived alone at the time, it had to be done. I cleaned the place and notified the bank of what and why and said I'm sorry, I'll probably be dead soon, bye bye. Finally sometime in the fall I had a positive MonoSpot - Dr J said that at my age he had a feeling that it was not something new and that it was probably just residual from some years before. OK. In the 9 months since I fist became sick I gained 90 pounds. I have such a small frame that the skin of my entire body felt like it was on fire - my facial skin was stretching, the skin on my tiny skinny wrists was stretching, the skin on my skinny toes was stretching to the bursting point! Why? Nobody had a clue. I asked kind Dr J - he said, "That's not my area." OMG. I still could not eat - possibly I was consuming 0-500 calories per day maximum and often going up to a week without eating anything at all - now I realize that I had developed a Schatzki's ring and further that my epithelium is so incredibly soft that my esophagus is a little big "baggy" sometimes so that swallowing is often tricky. Etc. Dr J did decide finally that year that I had something called Chronic Fatigue Syndrome - new to me and that part of this thing was that my metabolism had bitten the dust - he explained that it was either a neurological failure or a mitochondrial failure or both or... He was beginning to see some other patients with CFS or Fibromyalgia. He asked me to try to at least "walk around the coffee table once per day." My life has been DOA ever since. I lost every material possession. Every meaningful relationship except my daughter. My Dad was forced (by me haha) to help because I just moved in one day - he loved me but he was a selfish grouchy narcissistic aspie doctor who grew up and enjoyed being completely self focused - but he did love his only daughter - if nothing else as he aged people thought he had a young girlfriend. Grand - psychotic parents and my body is sick. So from 1995 until now 2023 - doctors and other practitioners have been precisely ZERO help. They are mean and rude. NOBODY IS HELPING NOBODY IS LISTENING. MANY are very stupid people in their own lives and practices. To get real help I'd need so much cash. I have wonderful Medicare (original so I do not need referrals and can go anywhere that accepts Medicare) and I have wonderful Medicaid (North Carolina) these 2 plans work so marvelously together - can anybody who sees this offer suggestions - I will drive or fly anywhere - and I have Medicare Part D with Extra Help so my meds are virtually free. The question is - WHERE are the Docs - the practitioners who know what this is - how to decipher the symptoms and help me?

ANY physical exertion is deadly - occasionally I can do a very small amount but it is hit or miss and I have to feel my way along. At one time I was a contender - I know exercise, I know my body, I know nutrition and diet academically - yet they want to school me thus: Well Miss Dea, if you'd just get off your fat ass and briskly walk a sub-2 minute 10 miles 7 times per week and eat only Kale then you'd be fine - because I know you're lying to me about sitting on the couch eating KitKats and drinking Coke - there's nothing wrong with you. ARG!

PS - I have a new boundary - The One Strike Rule - I do NOT take crap from any doctor or any other practitioner or person about anything about my health (or really anything else) and now when I go to a new office I actually TELL THEM THIS - and I tell them why - I make it as interesting and humorous as possible but they never smile and often they look somewhat afraid - but at this point I need trauma informed help too -

Seriously y'all I have been so battered by this - that if I did not have my daughter in this world and her wonderful husband and their son - I would have opted out back in about 1996 - this is really just too much for any one person to take - it's still too much but I'm TRYING to believe that there is something that will help me - - -