I will share my experience of getting healthcare in ways most people do not believe possible. I can't share my experience without mentioning the reality of our United States Healthcare system. Many people with my condition do not have access to the best care.
Imagine a world where we can get medical care without worrying about how to pay for it. That's my world. I have received world-class care navigating the VA and Medicare healthcare systems.
What if everyone got the care they need? People with chronic illnesses and anyone else who needed care could live better lives, but of course, someone always has to say, "But communism."
Socialized programs like the military, Veterans' healthcare, and subsidized programs like Medicare and Medicaid help people.
If we have billionaires, we can afford to take care of everyone, but instead of trying to make something work, we favor large corporations that make billions in profits. We're a capitalist country, and shareholders need to be able to write off their yachts.
On the other hand, I get to hear how doctors make all the money by doing unnecessary tests. That doctors and nurses are greedy. The truth is that American healthcare is governed by insurance companies, and because of it, people are living in misery unnecessarily and dying earlier than they should.
For as long as I can remember, access to American Healthcare has been a maze of bullshit and dead ends. It improved with Obama Care, especially after removing the existing condition loophole. They can't deny care, but medications and tests can be rejected, which impedes proper care and exacerbates symptoms due to cost. It happens all the time. But Obama Care can be improved. That's how laws work. We pass them, then improve them as we get more information. These things don't happen overnight.
I've had thirty years of veterans healthcare, private insurance doctors called "golden insurance," and Medicare. They all have problems, but I have gotten the best care with veterans' healthcare.
For example, I have had pneumonia since mid-February. I have worked with the same doctors, nurses, techs, and specialists since 2014. I work with my VA team, which works with one of the greatest scleroderma doctors on earth. That's not my opinion. He took on scleroderma research and treatment in the 1970s and teaches doctors worldwide. He doesn't work at the VA, but VA doctors are his colleagues at UCLA Healthcare. He is a faculty at UCLA and medical schools around the world.
VA Hospitals are teaching hospitals. In the early days of my diagnosis of scleroderma, I dealt with doctors who dismissed my symptoms as hysterical, called prevention of disease progression as "prolonging the inevitable," or fighting me and specialists on a drug formulary. For every doctor asshole who did those things, there were always three or four interns, fellows, and medical students who took the time to talk to me about scleroderma.
This ongoing episode of pneumonia was first diagnosed in the ED by x-ray. When emergency room doctors saw more fluid in my lungs where there was fibrosis and scar tissue, they consulted with the pulmonologist and rheumatologist on call. I was sent home with a round of antibiotics.
It seemed to get better at first, but when symptoms remained, I went back to the ED. I was immediately x-rayed and given a CT scan. I stayed in the ED until three in the morning. I saw two pulmonologists, a rheumatologist, and three other ED docs. My blood was drawn and put into many tubes. Nothing out of the ordinary. I was given a broader spectrum of an antibiotic and sent home. Unfortunately, I didn't get better.
On my next trip to the ED, I knew everyone there. The nurses took my vitals, and I saw a doctor's lickety-split. This time, I was being admitted to the hospital. I never went upstairs to a room. I had a room in the ED. It was weird, but it was the best way to get me in front of specialists immediately instead of during rounds the next day.
Two pulmonologists weighed the risk of bronchoscopy and began planning the procedure first thing in the morning. My blood was taken every six hours; there were at least fifteen tubes, with some weird ones ordered by infectious disease specialists. Luckily, I brought snacks. One of the resident rheumatologists stopped in with two medical students. It happens a lot anytime I get treatment. I will teach anyone listening to my experience and ways to improve patient care. ED docs were in and out of my room. That night, I saw two pulmonologists, two rheumatologists, two infectious disease residents, and a partridge in a pear tree. Nurses checked on me and made sure I had warm blankets. After mountains of tests, a repeat X-ray, and finally, a visit from two infectious disease residents who cleared me to go. It wasn't quite yet daylight.
I was sent home without antibiotics because, at this point, it was determined to be viral. I was told to come back if anything got even just slightly worse. I did it in a few days; it was a shorter version. My progress had plateaued, and I was told to rest and drink lots of fluids.
You just read about four separate visits to the Emergency Department of my local veterans hospital. I received all the tests ordered by four groups of specialists, I did not pay a single dollar, and I went home knowing that I could pop into the ED for a listen to my lungs to determine if I was getting worse. If so, the diagnostic dance with bloodwork, x-ray, and what was needed to give me a better chance of surviving pneumonia with pulmonary fibrosis.
Can you imagine getting all the medical treatment you need and not going broke?
I wish there was a way to get everyone the healthcare they need, but we can't, because money.
have personal obstacles and for most, those obstacles were there before they were parents. And really, parents who aren’t disabled have their obstacles too- so right there, the playing field becomes level. Disabled or not- parenting is challenging, frustrating, painful, smelly and will 
(Wow, I really had to work to clean up that last one. Thank you, Dr. Seuss.) 
