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 and some have mandated this since the early 1900s. Virtually all of Europe, included. The United States refuses to get on board. We can’t get it right in 4-8 years. It takes time… flipping from red to blue, hot to cold every decade is a disaster when we can look at several dozens other countries that have been doing it for decades. And no, don’t tell me I need to leave my country. My point is that there are answers out there but we have no humility and are drowning in pride and so divided that we would rather turn one half of our own country into a third world status than to pay a couple bucks a week in taxes for healthcare.
Oh, but we will gladly pay it for military. Just not for the environment though. Seriously, all this is, is taking a budget and moving it somewhere else and that is screwing over your neighbor. New York was known as the melting pot. Now we just want corn dogs and apple pie.
Here in America, we often feel that we have to work ourselves to the bone to “earn” the right to be medically treated—unless, of course, you come from wealth, have a trust fund, or are lucky enough to be born with healthy DNA. Well, guess what? I work my ass off. I’ve never had just one job. I don’t come from money, and I was born with a rare disease. There have been days I’ve gone to work despite being in severe, debilitating pain or struggling with irregular heart rhythms, simply because I have a family to feed and a roof to keep over our heads. I’ve even chosen work over the ER because I needed the money.
Sometimes, I’d spend days recovering after—shutting off my phone, crawling into bed, ordering pizza for the kids, and hoping I’d wake up the next day. Every time I’d make progress, life would knock me back down, and I’d have to start all over, scraping by.
If I had my health, I’d be rich—not from money, but from how damn hard I work and the endless ambition I have. Unfortunately, I don’t qualify for health insurance, and I rarely qualify for Medicaid. On the rare occasions I do get access to it, I’m lucky enough to have coverage for about six months—but it’s never enough.
I am what America hates. Your tax dollars paid for my open heart surgery. I disgust 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’ve had some very close calls this year, often dismissed simply because I looked healthy. For 32 years, I’ve searched for answers on my own while being medically neglected year after year. Just recently, I had my Tilt Table Test. I wore my usual light makeup and rosy blush, part of my daily routine. If I don’t cover up my fatigued eyes and pale skin, people ask if I’m sick or tired all day long. The nurse said I looked great and assumed this test would be a breeze for me. “She still has color,” he said—just seconds before my blood pressure dropped, my heart rate plummeted, and I felt nauseous and horrible, to say the least.
Maybe it’s Maybelline, but suddenly, I was head down, being pumped with fluids. Shortly after, I went into hypoperfusion. I was stabilized quickly, but despite how terrible I felt, I was relieved to finally have it all on paper—proof of what I’ve been going through. Every ER visit, ambulance ride, and hospital stay earlier this year, my symptoms were dismissed as anxiety, and I was handed prescriptions for Xanax and Valium and sent home. Our healthcare system, driven by capitalism, failed me time and time again. It’s corrupt and unfair, and we built it this way—and refuse to do anything about it. We are blind to the problem. Wake up!
Despite my 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. Life feels like quicksand.
At one point, I was diagnosed with acid reflux—a condition I don’t have—and prescribed medication for it. Then, I was diagnosed with anxiety and panic disorder and given drugs for that, even though I don’t suffer from anxiety. I refused to take those medications. Before they ruled out seizures, I was given seizure medication to treat what I thought were migraines with auras. Turns out, all I needed to do was cut out preservatives and dairy, and my migraines disappeared.
I can’t help but wonder how many people are sent home, drugged up with a misdiagnosis. How many “young and healthy” looking women have been prescribed a new drug dependency when they really just had a deficiency that could have been managed?
I have children, a business (or two), and I work as hard as I can whenever my body allows it. Just because I look fine doesn’t mean I don’t feel like absolute crap or suffer from chronic, debilitating symptoms. I would be devastated to give up this fight and spend every day in bed. Sometimes, I feel like I should, but I have so much to live for. I want to see as much of the world as possible, even if every step hurts and I have to stop often. I’ll get back up and keep going. 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 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 or Marfan. I recently requested ANA blood work and tested positive, meaning I have one an autoimmune disease.
My goal is to raise awareness among doctors and medical staff about rare diseases, and to remind them that when they hear hooves, sometimes it’s a zebra. I want to inspire others to take control of their health, educate themselves on nutrition, and understand what our bodies truly need to thrive. Most importantly, I want people to walk away from doctors’ visits with answers, not uncertainty.
I hope that I can continue to fight this battle, or at least open someone’s eyes to how wrong this system is. I just want to live. I’m not ready to go. Please consider people like me before you take away what little medical coverage we have left. Think about my soon-to-be husband and my three children before you deny me access to healthcare equality. I’m never going to give up, but I may die trying.
If you still feel like reading, I urge you to read Marie Claire’s publication on women’s healthcare.