Stephanie Rork

I wanted to share my experience and timeline of what I've endured as a patient and how it's affected my family. Before LC, I was completely healthy, 50yo. I ran marathons 3-4 a year, competed in cross fit, tough mudders, spartan races, trained in Olympic Weight Lifting and could deadlift 3 x my weight. I worked nearly 80 hrs a week and frequently traveled for my job. My oldest granddaughter was born with CP due to medical malpractice and negligence, we cared for her while her mom finished nursing school and they lived with us for 4 years. We were taking our granddaughter to CP clinics, OT, PT, speech while my daughter got her degree so they would have a good life. I got sick when she turned 7. In a way we are very close bc she and I share experience of complex medical issues. Since then I've had another 7 grandchildren. I can't live with them or I used to, I can't run or carry them or even keep up, but I do the most I can bc life is short. I hide a lot of the pain from them, but they still 'know'. My eldest granddaughter with CP uses sign language and she'll tell me 'I miss how you used to be'. It breaks my heart. But I will over exert at my own expense bc I love them and I want them to have memories for a lifetime even if I can't do nearly as much. We also have 4 grown children, 2 in the medical field. They are always there for me and my spouse and give valuable advice I can trust. But it's hard on them to see how it's broken me down. My sweet loving husband of 20+ years quit his job about 4 years ago, he couldn't leave me alone. Frequent falls, concussions, dangerous infections - he still will not leave me in the house alone. I know he's tired and weary, but he never complains, he never gets any time of his own but he is not bitter, he's my hawk, watching out for things that could harm me. He's also my Structured Family Caregiver since I qualified for a Medicaid waiver this year. For 3-4 years the only income we had was my disability which barely paid the bills and add on the stress of $12k healthcare out of pocket yearly. Our car died at one point and my relatives pitched in to get us a appts even 90 miles away and then we borrowed my daughters extra car for 2 years, without heat or air working. The water heater died 6 months ago so we have to shower/bath by heating up water in a teapot, bc the stove also went out. He helps to keep me clean no matter what, and still not a single complaint. It doesn't bother me either, people lived with less most of history. I lost my health, my job, my entire identity, my hobbies, my independence and the ability to participate in many of my loved ones events. Bounced from dr to dr bc no one would acknowledge the damage Covid caused until finding a few that do. I have 25 different specialists. That is insane but needed. Before LC, we had about $160k in salaries per year, reduced to 28k for a few years and now around 40k. No retirement, no 401ks bc they were exhausted, no savings bc Medicaid doesn't allow it, no life insurance bc again Medicaid doesn't allow it. We take comfort in owning our home and are content and grateful for the small things. Most days are awful, waking up and not knowing what my body will do to me that day. So we accepted that yes things do suck, but we will live for the little glimmers of light and happiness and embrace those. That's all we can do. About 2 years ago I nearly died from this, had another feeding tube surgery, it got complicated, infected and I was only about 80lbs. I couldn't recover, I looked like a dead one walking, well laying in the hospital to be exact. One month of hell for my family. Then sent to a nursing home for pt/rehab. But that wasn't done. And I was stuck in a room with a 90 year old dementia patient who screamed all night. Horrible. My husband got me out of there bc I was getting worse not better. Followed by Home Care for about a year, palliative care, and then long term pt where I was discharged bc they couldn't help me. Almost constantly live with infection, I can't fight it off anymore. We had to figure everything out ourselves, doctors were little to no help. He spends hours researching for the magic cure, there isn't one. I've had specialists tell me I am speaking above their level. It's really pathetic. I've had drs tell me to just exercise or drink more water, rx meds that are contraindicated, and many who passed me off. The ER is a joke, although I'm constantly told to go there. After the last concussion, they assumed I was druggie bc of my weight, they did drug tests without informing me which were clean, I was given fluids and sent home puking in the same grocery bag I brought into the ER. I could go on and on, but I know you know the struggle. So post Covid 5 years later I have had the following occur in this order. Pre 2020 Conditions: Endometriosis (TAH/BSO); Insomnia (sleep aids); Sjogren's Disease (Treated only with GF, DF, SF diet for previous 15 years; Mild Dysphagia; removal of major salivary glad); Hypothyroid (Synthroid). Post 2020 Conditions in Chronological Order, Still Active: Covid (treated with Monoclonals); Long Covid / Covid Long Hauler (Immune Dysregulation; recurrent infections; Neutropenia, leukopenia; 50% rapid weight loss; Failure to Thrive; Crushing Fatigue, Muscle Pain; Nerve Pain; Weakness, Fall Risk, Dizziness; Muscle Wasting; Bed bound at 80lbs.; Hospitalization and Nursing Home Care 24 days; Home Care for 12 weeks; PT 12 Weeks; Severely affected the pre-existing Sjogren's Disease swallowing and resulting in serious nutrient deficiencies); Gastroparesis (NG tube, NJ tube - caused severe issues coiling in stomach; GJ tube Placed - continued to coil in stomach often due to nausea, vomiting, coughing; Malabsorption; FTT, Weight and Muscle loss; Tremors; visual floaters, migraine; lower mobility, frequent falls; frequent infections from tube; peristalsis; neutropenia, leukopenia, lowered immunity; deficiencies of Vit D, K, B12, Potassium, Protein from malabsorption; Further impaired mobility and increased fall risk; Medications not always absorbed as rxd, nausea, vomiting, brain fog; Surgical Placement of J Tube - minimized coiling, symptoms not changed); ME/CFS (IG viral loads high with hematology for dx, continued worsening fatigue, weakness, pain, frailty; light sensitivity increase; flu like symptoms daily); Tachycardia/Bradycardia & Erratic BP Changes (Hyper-POTS) (Dizziness, fall risk, concussions; eye floaters increase, inability to look up, down or side normally without dizziness; ANS dysregulation; Fight or flight episodes frequently, syncope, autonomic failure, fluid/electrolyte imbalances; extreme sensitivity to lights, sounds and startle reflex; frequent falls; heat sensitivity and inability to even shower using hot water or be outside in summer months; memory loss short term); Dysautonomia (Dysregulated ANS responses; inability to coordinate bladder muscles; feeling of forgetting to breathe; temperature dysregulation; spacial and depth perception issues; heat and cold sensitivities, shriveling and numbness in hands; loss of feeling in finger tips; frequent cuts, burns ect from not noticing them immediately; lowered mobility even more; aggravated digestive issues and increased issues related to malabsorption; adrenal dysregulation, hives, floaters; new allergies to common things; worsening insomnia, reduced mobility and also gut motility; severe neuropathy and pain; further electrolyte imbalances; pain tolerance increased due to ANS error and immune system not responding to bacteria and virus's appropriate, lower immunity further); EDS (hEDS)+suspected vEDS (joint pain extreme joints slipping in 4 limbs and hands; reduced mobility; extreme muscle pain, laxity from connective tissue disease; nerve pain in back and most joints; frail skin, slow wound healing; additional infection risks with poor immune response; thinning veins with IVs leaking into surrounding tissue & swelling; migraines, eye pain and straining; pelvic floor issues exacerbated; hypermobility, joint dislocations); MCAS (worsening hives and allergic responses to medications and every day products ie latex, gauze, tapes, adhesives, scents, material; overactive histamine responses, flushing, redness, rashes susceptible to infection, swelling of throat; inappropriate swelling to injections; worsening insomnia; throat tightness, laryngitis; more heat intolerance; mouth swelling; syncope, brain fog, dizziness; abdominal pain; burning eyes, scalded skin feeling; multiple organ involvement); Neuropathy (Loss of feeling in hands, feet, face, limbs, nerve pain in back neck; cold shriveling fingers and feet; burning skin sensations, pins, needles, shocking sensations; severe nerve pain in sciatic and back/legs; reduced ability to feel pain that can endanger me; heaviness of limbs, frequently dropping things, uncoordinated movements; intense itching, sensory processing disorder; urinary and bowel difficulties and muscle coordination); Major Depressive Disorder Anxiety (Medically induced and financial, emotional responses that follow a grief process); Osteoporosis (Dexa scan -3.5 to -3.9 back and hips, severe; Serious medical concern for bone breakage and how that would impact my overall health; bone pain; steroid trigger point injections every 90 days in back and hips; breaks and fractures in fingers, hands, feet, forearm, knee cap; osteoarthritis in hips, knees, ankles, wrists); Ophthalmic (Severe dryness and pain in eyes; extreme eye pain, itchiness; lack of tear production; scratched lenses, severe; sensitivity to light, floaters; eyelid swelling; cataracts, significant loss of vision/acuity; migraines; meibomian gland dysfunction and lack of oil production to protect eyes, reduced tear production; punctal plugs inserted); Fever of Unknown Origin (started 6/6/2026 2-3 degrees above baseline) (Bladder infection for over 5 weeks various high count negative gram rods over three cultures; flu like symptoms; allergic reaction to an antibiotic with stroke like severe issues involved an ER visit and home care; extreme fatigue, muscle weakness; skin burning sensations; pain in lower back and urinary tract; laryngitis, candida in mouth, eyes, throat, and genital area; memory lapses; eye pain); Adult on-set Stills Disease (rash trunk and limbs and face; joint pain, stiffness, severe wrist pain; muscle aches; flu like, sore throat; fatigue, bone pain); Additional Details/Miscellaneous (Elevated LFTS, Low WBC, High LDL, High Iron Sat, decreasing trending low WBC, failure to absorb thyroid medications; 2 x Weekly LR infusions; 1 x Monthly B12 injections; 1 x Monthly Vit D, Evenity injections to repeat Dexa in Jan 27 and move to reclast or prolia; As needed IV Venofer (IRON) infusions over 5 day cycle; 18 weeks of PT this year, discharged bc I know exercises, but PT cant reduce pain levels; 1 x 90 day 12 Trigger-point injections in spine and hips; IV antibiotics due to malabsorption unless a liquid form is available; Other deficiencies treated with oral liquid nutrients; J tube infections constantly; Wound care treatment weekly; Referral to Geneticist for other forms of EDS markers, vein walls are thinning which implies vascular involvement; Referral to Neuroscience Specialists to evaluate treatment of cervical cranial instability; Referral to allergist with the new serious reactions to some antibiotics attributed to MCAS). We really appreciate all your efforts to have Congress hear us and act. Strangely, the only place we've found help is through each other and through groups like this. We pray together nightly and throughout the day bc our faith is what's holding everything together now. God bless you for giving us a voice. Stephanie Rork, Indiana.