Tag: pacemaker

Soon, the president of the Divided States of America will be cutting almost a trillion dollars for Medicaid cuts. As I often hear about the complaint for our tax dollars being spent on helping people like me, I never hear any disgruntled comments about the rest of our federal tax spending. We are just shuffling money from one area to another, from healthcare to Military and Defense. And state taxes? How dare we pay for those roads that we never drive on or the schools that our children don’t go to? America is not free, is it? 

Guys, only 28% of our taxes go towards healthcare. No one bitches about where the other 62% goes. Why is that? Do we need to educate ourselves more?

We are very privileged and I am grateful that I have the opportunity to bitch about getting the wrong Starbucks order, don’t get me wrong. I know it could be worse. However, I know it could be better. 

Almost 60 countries Have Universal Healthcare. Virtually all of Europe, included. The United States refuses to get on board. Here in America we feel that we work hard and must earn our right to be medically treated, granted we have a trust fund and come from wealth or were gifted with healthy DNA. Well, guess what? I work my ass off. I have never only had just one job. I do not come from a wealthy family and I was born with a rare disease. I have even gone to work in severe debilitating pain or irregular heart rhythms and just smiled and pulled through because I have a family to feed and a roof to keep over our heads. I have gone to work instead of the ER because I needed the money. I sometimes would spend days recovering from this… Shutting down my phone and crawling into bed, ordering pizza for the kids and hoping that I wake up the next day. Everytime I would get ahead I would get knocked back down and have to start over, scraping by. If I had my health, I would be rich from how damn hard I work and my infinite ambition. I don’t qualify for health insurance and I usually don’t qualify for Medicaid. Seldomly I get access to Medicaid and get the luxury of medical coverage for about 6 months but it is never enough time. 

I am what America hates. Your tax dollars paid for my open heart surgery. I digust you. This year, you win. Your votes will take away my coverage. And when that happens, I hope that you think about my children and the mother that you will take away from them so that you can afford a sweet new car with heated leather seats and Bluetooth and more military whatever. 

I have had some very close calls earlier this year and was often dismissed because I looked healthy. I have spent 32 years of my life looking for answers on my own while being medically neglected, year after year. Even recently, I had my Tilt Table Test and wore my usual light makeup and rosy blush. It is my daily routine. If I don’t cover my fatigued eyes and pale skin then I will be asked if I am sick or tired all day long. The nurse said I looked great and that likely this test would be a breeze for me. “She still has color,” he said seconds before my blood pressure bottomed out and my heart rate plummeted and I felt nauseous and horrible, to say the least. Maybe it’s Maybelline, because suddenly I was head down and being pumped with fluids. Shorty after, I went into hypoperfusion. I was stabilized quickly but despite how horrible I felt, I was relieved to have it all on paper and proof! Each and every ER visit, ambulance ride and hospital stay, dozens in The beginning of the year, my symptoms were dismissed as anxiety and I was prescribed Xanax and Valium and sent home to die because our healthcare is capitalism at it’s finest. It is corupt and unfair because we built it this way and refuse to do anything about it. We are blind. Wake up! 

Despite the 2011 open heart surgery scar and four cardiac ablations, I still was not taken seriously. Hypoperfusion, or Circulatory Shock,  was diagnosed by my neurologist after my clear brain MRI and EEG of my brain waves rules out seizures and any neurological disorders, as well as my recent positive Tilt Table Test, pointing back to cardiac. I went through so many years of tests and no answers but refused to believe that this was anxiety. I was the happiest I had ever been. Finally some progress but time is running out until coverage will end. 

At one point, I was diagnosed with Acid Reflux, which I do not have and was given medication for that. I was diagnosed with Anxiety and Panic Disorder and given drugs for that. I do not have anxiety. I refuse to take those drugs. Before ruling out seizures, I had debilitating migraines with auras and was given seizure medication. Turns out that all I had to do was cut out preservatives and dairy and my migraines went away. I can’t help but wonder how many people are sent home drugged up to die with a misdiagnosis? 

I have children, a business or two, a fiancé and I work very hard every chance I get, when my body allows it. Just because I look fine, does not mean that I don’t feel like shit and have chronic debilitating symptoms. I would be devastated to give up this fight and be home in bed all day, every day. Sometimes I feel like I should be but I have some much to live for and want to see as much of the world as possible,  even if each step hurts and I have to stop often. I will get back up and keep trekking. I am not giving up. 

Fortunately, my patience fizzled and I became an advocate for myself and finally made progress in a diagnosis to get proper management and treatment. My next step is a pacemaker and defibrillator on June 8th but there still needs to be an answer as to what the underlying issue could be. Currently, I am waiting on results for Elhers Danlos Syndrome and Marfan. I recently requested ANA blood work and tested positive, meaning I have one of 120 autoimmune diseases. 

My goal is to help raise awareness to doctors and medical staff about rare diseases and that when you hear hooves, sometimes it could be a zebra. I want to inspire others to get healthy and educate themselves on nutrition and what our bodies need to thrive and learn how to not walk away from doctors without answers. 

I hope that I can still fight this battle or open someone’s eyes to how wrong this government is. I just want to live. I am not ready to go. Please consider people like me before you strip what is left of our medical coverage. Please think abouty soon to be husband and my three children before you ban me from healthcare equality. I am never going to give up but I may die trying.