Hi, my name is Shelby, I’m 25, and I’m deaf, chronically ill, and disabled. I am lucky enough to be on Medicare and Medicaid. My main condition is Ehlers-Danlos Syndrome Hypermobility Type. Because of hEDS, I have joint dislocations and subluxations, hyperextentions, joint hypermobility, syncope and near syncope, Interstitial Cystitis, Fibromyalgia, degenerative disk disease, chronic pain, chronic fatigue syndrome, multiple vitamin deficiencies, Irritable Bowel Syndrome, multiple severe allergies, asthma, the beginnings of Gastroparesis, Gastroesophageal Reflux Disease, headaches, migraines, and I’m probably missing some stuff. Besides the hEDS, I also have Polycystic Ovarian Syndrome and Meniere’s Disease.
My healthcare involves a primary care physician, gynecologist, gastroenterologist, neurologist, allergist, uro-gynecologist, ophthalmologist, otolaryngologist, geneticist, orthopedist, physical therapists, orthoscopic manipulation therapist, spine specialist, cardiologist, audiologist, endocrinologist, urgent care visits, emergency room visits, blood tests, ultrasounds, cat scans, x-rays, MRIs, various other diagnostic testing, daily medications, as needed medications, emergency medications, surgeries, equipment like my nebulizer, hearing aids (which are not covered by many insurances because they are deemed “cosmetic”, I am VERY lucky that insurance covered mine), among other things. I would not be able to have any of this without my insurances. If my health insurance is taken away or cut in any way…my future is on the line. My health is on the line. I may not have access to the doctors I need, the medications I need, the mobility aids I need. I cannot afford to pay for these things out of pocket. Right now, I can’t even work because of my illnesses. I am currently trying different medications to help some more symptoms. I am very sensitive to meds, so it is difficult to find things that work for me and my body. Its really trial and error. Something I wouldn’t be able to do without insurance. I am also in the process of getting a better knee brace and a custom ultralight manual wheelchair with power assist…things I would not be able to get without health insurance, yet need for a better quality of life.
I am working on getting my health to a place where I can go back to school and finish my degree. I was majoring in early childhood education before I had to leave. I want to go back. My goal is to work at a Deaf school someday with preschool/kindergarten aged kids, and eventually work with early intervention to help hearing families with deaf kids. Opening a childcare center/preschool for Deaf kids and hearing kids with Deaf family members is something else I think about doing. Someday I want to adopt a kid or two, and maybe become a foster parent as well. I have high hopes for my future. If my health insurance is taken away or cut…my dreams go with it. I can’t be a contributing member of society without health insurance. I can’t have a good quality of life without health insurance.
Please call your senators and ask them to oppose the BCRA (the Better Care Reconciliation Act- the healthcare plan to replace the ACA, Affordable Care Act/Obamacare).
Lives are literally at stake here. People will die if their health insurance is taken away. My own health is at stake here.