Medicare For All Saves Families
I’ve been unhealthy a lot of my life due to some genetic issues. About 20 years ago it started to really show. Fatigue, brain fog, and muscle weakness became my constant companion. It was another 10 years before I was diagnosed with several genetic disorders. Prior to that, I ran the gamut on diagnosis and treatment options.
I tried special diets, medications, exercises, changes in environment, and going completely natural on anything I surround myself with. Some of those things helped, some of them hurt, or some of them showed no benefit.
Until I had genetic testing done all of my doctors were guessing at what my test results meant. Half of the time I would have a low blood count, other times it would seem normal. I went from having very low blood pressure for years to spikes seemingly out of nowhere.
Weeks would go by where I was completely exhausted while my mind was active and wanted to accomplish things. Then I’d wake up one day and I’d feel fabulous and have a couple of good weeks of getting things accomplished only to find myself right back to the beginning. I had doctors that took this as depression. I wasn’t depressed. I wasn’t even particularly unhappy. I just really wanted to go out in the world and discover and create, love and be loved, and make a difference in others' lives.
After my diagnosis, I was able to put all of this scrutiny for why my health was the way it was to bed. That was the biggest relief. When you’re chronically ill there are those amazing people that want to help you find a cure. There are also people who try to self diagnose you or attribute your poor health to something you did. I suffered a lot because of the opinions of others. Those that claimed to love me, or have my best interest at heart. People who weren’t really qualified to give an opinion about someone else’s medical health.
Do I blame them? No. Some people just like to solve problems. Some are well-meaning but assume that their personal experience with something gives them all the facts and the ability to make judgments about others. The lesson I have learned from this is to never assume you know anything about someone else.
After a Year of Hemorrhaging, I Received Treatment
Over this past year, I have been hemorrhaging almost nonstop. It would let off for a couple of days to a couple of weeks if I was lucky only to return full force. Recently I got to a dangerous level and I had to go to the hospital to have the bleeding stopped. I’ve been here before.
So I called a neighbor and asked her if she could watch my special needs six-year-old daughter. This was nerve-racking since I just recently moved to this neighborhood. I called my best friend who lives in another state who would take custody of Aurora if I passed unexpectedly to notify her of what was happening. My stepdad who lives below me drove me to the hospital.
I have a blood disorder as well as several autoimmune disorders that tend to travel together. After my doctor stabilized me by giving me multiple medications for the bleeding, pain, and nausea. The doctor said that I was just above the danger mark for needing a transfusion. He released me and asked me to see a specialist right away.
I thought this was very strange. My numbers were well below what they have been in the past when they have recommended a transfusion. I was hardly conscious. I kept feeling like I was going to pass out as the room spun while I was sitting. I called a few friends while at the hospital to talk to me so that I could stay conscious.
As Recommended, I Sought out a Specialist
I was released before midnight and came home and got my daughter and laid down hoping that I wouldn’t wake up hemorrhaging again. The next day I called one of the specialists my doctor had recommended. He asked for my file and was horrified that they had let me go home. He explained to me that the hospital had requested through Medicaid a transfusion but that according to Medicaid‘s requirements I did not qualify. To summarize he told me that unless my numbers dropped again or I fell unconscious they would not cover the transfusion.
At first, I thought well my numbers will drop so I can get the transfusion then so I wasn’t concerned. He informed me I didn’t have any more blood to safely lose. He explained that the combination of drugs they gave me at the hospital and the hormones they put me on to stop the bleeding at home would have a rebound effect when I stopped the hormones. In other words, my bleeding would be worse. I was being sent to him for him to look for the cause of the bleeding. Most likely an ovarian cyst or uterine cyst.
He explained that when the severe bleeding came back it may be too late for that transfusion to realistically keep me going. Since I had already lost so much blood, and since they knew that I bleed profusely he expected that when it came back they wouldn't be able to replace it fast enough.
He Gave Me Limited Options for Survival
My only options for survival as far as he was concerned was to either get my own funding for the transfusion or to pass out close enough to a hospital that they could get a transfusion in quick enough. As a single mommy of a special needs child this terrified me.
Fast forward to several more bleeds, a biopsy that I wasn’t sure I would survive the bleed it may induce, changes in my medication when it stopped working to curb the bleeding, and a massive amount of anxiety about what my future held.
Over the past couple of months, I have lived in terror as I try to work at home in a pandemic as a single mom of a special needs child while also I’m getting enough bed rest to manage the side effects of the bleeding and hormones. I have had to juggle working enough to support us and getting enough rest to rebuild the blood that I’ve lost and not trigger another bleed. I can’t explain to you what this is been like. I feel guilty when I rest and I feel guilty when I work too much and trigger more bleeding.
I feel guilty when I can’t get up and play the way my daughter wants me to. Then I feel guilty when I do too much with her and it requires me to rest the remainder of the day out of sheer exhaustion. My days are exhausted trying to juggle work, health, and family. People shouldn’t have to feel guilty about caring for themselves but under our current system that’s exactly what happens.
The Stress of Not Being Able to Afford Medical Care Takes Its Toll
Not being able to afford appropriate medical care takes its toll on you physically and emotionally. It strains your relationships and sculpts your days into one filled with regret, anxiety, and sometimes hopelessness. all of these things could’ve been avoided if we had Medicare for all.
Had I been able to get the transfusion I needed and other therapies that Medicaid denied I would be mostly back to normal by now. I would have the energy to play with my daughter. I would be working at full speed and not have financial concerns that have come from trying to work in poor health. I wouldn’t be worrying about how to save up enough money for a transfusion during this already financially crunched holiday due to the pandemic and lost work. Simply put I would have peace of mind and good health. Both things that people strive for.
A Call to Action
Our basic happiness and health should not be determined by how rich we are. Everyone should have the right to basic health and peace of mind. Medical bills shouldn’t bankrupt families. A family shouldn’t have to decide on whether to pay for medical procedures they need or feed their kids. Now more than ever in the middle of a pandemic, we need medicare for all.
I hope you will join me in fighting for Medicare for All from my family, for yours, and for all those who can’t fight for themselves. In one of the richest countries on earth, there’s no reason we can’t all have basic healthcare and lives free of medical debt.
