Help Me Get Adequate Medical Care

UPDATE: I have accumulated an insurmountable amount of medical bills yet again, and I’ve spent a bunch of time in the hospital recently. I’m in the hospital now, with no end in sight. I have had 4 big surgeries in the last 3 months, and I’ll be having surgery again today. A week ago, when I was in the hospital on a different admission, I contracted a severe case of c diff that has proven difficult to treat. I perforated my continent catheterizable channel and had to have another catheter placed. This caused a drug resistant bladder infection that moved to my kidneys, and my blood cultures also came back positive. My vitals have been out of control, with my resting heart rate that refuses to go below 115, most of the time hanging out in the 130s and 140s laying down. I am on IV Benadryl, but there is a nationwide shortage and I can only get it in the hospital until October 30th. I’ll likely be inpatient until then, which is not only frustrating for me and my family, but it’s so expensive. Some of you may know that I’m an enrolled member of a federally recognized tribe (Choctaw Nation of Oklahoma), and that I had a zero cost sharing insurance plan through the healthcare marketplace because of a provision in the ACA that allows enrolled indigenous people to receive free healthcare. Well, since being approved for disability, they are refusing to let me supplement my Medicare with my zero cost sharing plan, despite the fact that I’m entitled to it. I may have been approved for Medicare, but I’m still Choctaw, that hasn’t changed. I have thousands of dollars worth of bills, and can not afford my medication any longer. I will end up having to fight this in court, but until that happens, I have no plan or means to obtain my 20,000 dollars a month worth of IV and PO meds. I’m being crushed financially by my illness and very honestly feel like a ticking time bomb waiting to financially ruin my family. If you could help me build a wall around myself and soften the blow, I would so appreciate it. Every dollar will go toward my medicine, hospital bills, gas so the kids and my husband can come see me while I’m in here for the long haul, and some food while I’m here in the pokey. Thank you so much for reading. Every dollar helps. Please read below to know more about my fight!

Hi! My name is Meredith and I am falling apart like a succulent chicken in a crockpot due to a genetic connective tissue disorder called Ehlers Danlos Syndrome. My children and I were diagnosed with this syndrome over 5 years ago, when I was also diagnosed with postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia. This causes extreme heart rate changes, from my already high resting heart rate of 110-130 bpm to sometimes over 220 when I stand. At the time when I was diagnosed, I was "lucky" that my children also had EDS and we were diagnosed together, because I didn't have access to decent health care, and they did. Because it is genetic, I was given access to their geneticist. He called my cardiologist and helped them diagnose my cardiovascular/autonomic issue properly and start medicatation. At the time, I owned a farm to table restaurant, Butterbean Bakery &  Bistro, which was my dream, and was passing out on a regular basis because of my rapid pulse changes and my brain wasn't getting enough blood quickly enough. This is unfortunately still my daily reality. I've since had to close my restaurant because it wasn't safe for me to cook with the risk of passing out looming. A couple of years passed like this, where I thought I would get better with changing medications or trying PT, etc... But that didn't happen. Instead my body started breaking down more. I started going blind. I went to a neuro opthalmologist who told me I had bilateral papilledema which is caused by increased intracranial pressure, and he ordered a lumbar puncture and MRI of my brain. I had white matter lesions, a completely flattened pituitary gland inside of my sella, and flattened globes from the pressure of the cerebrospinal fluid pressing on my brain. My lumbar puncture opening pressure was very high, and I was admitted to the hospital to see if we could get my pressure controlled with medication. We could not. I had brain surgery a couple of weeks later to have a ventriculoperitoneal shunt installed. In the next 7 weeks I would have 3 surgeries. It was then I realized I would never go back to work. My illness had stolen my dream from me, my restaurant, and it has now stolen my ability to provide for myself. I applied for disability but it's taking around 2 years to get in front of a judge. My insurance has been tenuous at best, and has changed every year. I had BCBS through the ACA and had a great team at Vanderbilt of competent doctors who knew how to care for people with my genetic disorder and the comorbidities that often come with it, going so far as having one of the only POTS clinics in the country, but the past year I've been forced to seek care elsewhere because BCBS dropped all counties in the greater Nashville area and there were no options on the marketplace that had a deal with Vanderbilt. I've had no continuity of care and my health has suffered terribly. I now have a power port in my chest that is accessed 24/7 and I'm hooked up to it 12 hours a day getting Benadryl and saline to stop anaphlactic reactions, and I get high dose IV pulse steroids through my port as well. Including my port meds and supplies, I'm on about 20,000 dollars worth of meds a month keeping me alive. I owe money to Vanderbilt (they diagnosed me with exocrine pancreatic insufficiency, and my pancreas is 90% destroyed, and that cost a ton of money) as well as other physicians and I need to be able to go back to my doctors in January and have no idea how to do so without asking for help here- they need to be paid. I have never done this. I don't feel comfortable asking anyone for help ever. But I'm humbling myself and figure that the worst thing that can happen is that I'm humiliated. Thank you for reading, anything helps.