Both my daughter and I would be hugely adversely impacted if Trumpcare were to become the law of the land.
Put plainly, we would die.
I am 60 years old and disabled. My daughter is 23 and also has multiple rare and severe medical challenges that keep her from working a typical job.
The medications I need to breath and the medications she needs to keep from bleeding to death are not optional. My medications would cost about $1,000 a month without insurance. That is what we live on with my social security. This also doesn’t take into consideration the huge raise in costs Trumpcare would mandate just for my insurance. Where my daughter is concerned, we are still in the learning process, waiting for test results to find out for sure which type of factor my daughter will need to keep from bleeding to death. The meds we know she will continue to need would cost over $500 a month, not including factor. If she is able to use DDAVP, the least expensive form of factor, it would add an additional $832. per month to the costs.
We have considered moving to Canada because being without insurance and medications would be deadly for us.
We are far from unusual in having chronic medical conditions that will be deadly without treatment. Since all of the above are preexisting conditions, we would still have to pay out of pocket for everything.
This is why single payer insurance is critical for ALL OF US.
I could pepper you with facts about why healthcare matters to us all and anger you with political machinations, but today I want to just tell you my story.
I am a disabled single parent with a daughter who also suffers from major health problems. I was disabled as a result of a nearly-fatal car crash in 1983, when the car I was driving was crushed between two other vehicles. They said I should have been dead. It wasn’t my time. The result was the end to my budding musical career, and the inability to work a regular job. I sustained head, neck, back and jaw injuries, fibromyalgia, psoriatic arthritis, severe chronic pain and more.
For a dozen years, I was unable to do much of anything. The life I had dreamed of, worked hard and planned for was gone in the blink of an eye, with a flash of color and lights in my rear-view mirror.
When I finally got to a point where I could start over, I ended up in a domestic violence relationship. That wasn’t totally bad. I had been told I would never be able to have children, but at the age of 38, had my miracle daughter. She was the reason I was able to get out of the violence alive. (Often what we cannot do for ourselves, we can do for our children.)
One of the side effects of domestic violence is post traumatic stress. Both my daughter and I deal with this on an ongoing basis. Despite that, I turned tragedy into triumph, pioneering work in domestic violence cyber-advocacy, and working to educate others about domestic violence.
Over the last 10 years, I have worked with or overseen literally thousands of cases of abuse, with victim-survivors around the world. I chose to turn things around for others because of where I had been. My cyber-advocacy metamorphosed into real life advocacy, and I began educating legislators on both the state and the national levels. I testify on issues ranging from the aforementioned domestic violence to homelessness, disability, and poverty issues; acting as a voice for the vulnerable, many of whom cannot speak for themselves.
All of this while dealing with severe chronic pain, mobility challenges and economic hardship because of ongoing financial abuse.
For a long time, if you had passed me on the street, you would not have known what was happening, because I am very good at holding things together.
I looked “normal,” and sometimes that is a disadvantage because people make assumptions about those with invisible health problems. Believe me, just because you cannot see it, doesn’t mean it doesn’t exist. Look at the wind. One of the results of long-term stress is that adrenaline continues to course through our bodies, and that is hard on internal organs. It can also trigger things like fibromyalgia and psoriatic arthritis. I did not have either of these illnesses before my accident and the domestic violence. If they are not dealt with, they become a cycle that cannot be broken, leaving the sufferer with life-long disabilities.
That is where I live.
I have been “running” from a wheelchair since I was 28. That’s when the doctors told me that was my future. I rejected their diagnosis, and successfully avoided going that route for 32 years. I’ve done my best to stay active, and though I cannot do a lot of the typical “work-out” things, did okay until a fall a few years ago tore my meniscus and my ACL. That had me out of commission for almost a year, and left me with a cane.
I have refused to allow that to define me. I continue to do my education and advocacy work, and as a result of the legislative stuff, with the encouragement of my daughter, went back to school with the goal of working in public policy.
At age 60, I am just two quarters away from graduation with my bachelor’s degree in Communications with a minor in film. I’m an independent filmmaker.
My daughter also has health problems. At the age of 8, she began having excruciating pain throughout her body. We got her to the hospital, but couldn’t get her out of the car because of paralysis. It was so frightening! Particularly since they couldn’t tell us what was actually going on. They gave her strong pain meds that made her more comfortable. Eventually she was referred to Seattle Children’s and diagnosed with reflex neurovascular dystrophy, a very rare form of childhood arthritis. At the age of eleven, she was admitted as an inpatient, and enrolled in their program to help treat it. At the time she was diagnosed there were just 3 places in the United States that successfully treated RND. We were blessed to be in a place where they could find out what was going on, and get treatment.
We will remember forever the Thanksgiving we spent at Ronald McDonald house, while she did what she needed to do, to get better. The type of arthritis she has means she needs to be in tip top shape. She needs to have a gym membership and be able to be in other physical activities. For as long as I could afford it, she was a member at our local YMCA and took dance and taekwondo, and it managed her pain.
Her health has deteriorated significantly and her pain level goes up because she is unable to do the therapy that “re-sets” her nerves, cutting the pain level and increasing her mobility. In addition to this, since she was tiny she has dealt with severe nose bleeds. These aren’t your garden-variety run-of-the-mill variety. These can last two or more hours. When she was five, we spent Christmas Day at Seattle Children’s to get her treatment for one. In her teens, she nearly hemorrhaged to death. That was a horrendous nightmare. Her hemoglobin went from a 14 which is normal to a 7.1 and if it had been a 7.0, she would have had to be hospitalized and have a transfusion. The doctor suspected she has a bleeding disorder, but said that due to the medication she has to take to keep from having a “repeat performance,” said they couldn’t test to know more.
When she turned 21, we had to switch doctors, and we had major problems with the new doctor. She needs major dental surgery, and we have both been very concerned about doing the surgery with her bleeding history. After a discussion with Apple Health (the Washington State healthcare insurance overseers) we switched doctors a few months ago. This doctor took my daughter’s history very seriously and told us about a different test that might help us figure out the mystery of her bleeding issue. She was tested for von Willibrand’s about 6 weeks ago. We finally got ANSWERS! She saw her hematologist for the first time last week, and we are now creating a plan to protect her. Now I am getting tested (waiting on results as I write this.)
Having access to good doctors, and having access to her medications is critical. It can save her life and prevent her from having a major bleed that would mean even more costs and hospitalizations. This is why I will fight for all I am worth to make sure she has access to healthcare. Yes, I am in mama-bear mode. I will do whatever it takes to make sure she is okay. I proved that when I left my home due to domestic violence and spent 4 months homeless, living as part of the underground, to keep us safe.
In my own case, I take medication to help limit the pain sensors that are malfunctioning due to my chronic pain. I have ongoing respiratory issues and use a nebulizer machine two to three times a day to help me breathe, and my specialist who handles my psoriatic arthritis is talking with me about the best treatment for my arthritis.
After my illness in December, I did most of my classes the last two quarters via the internet, not because I wanted to, but because to do otherwise would have landed me in the hospital, and what I am working to do is too important to risk my health. I also switched doctors recently to get answers and get healthy.
I have been running from a wheelchair for 32 years but last week I had to use one, twice. I hate this, and am going to do all I can to keep from going there, but I will do whatever I have to do, in order to fulfill my calling.
It’s not just about me. It’s about the millions of others who are struggling so hard they don’t have time or words to speak out about their own life and death struggle.
Here’s the deal: LIFE TRUMPS MONEY. I realize there is irony in how I said that, but it is the truth.
Greed cannot win, because we all have a purpose, and if we are dead, we cannot fulfill that purpose.
I refuse to back down, and I will fight with everything I have to be sure my daughter and her generation have the ability to be all that they can be, and to create a safe, prosperous and happy future.
Blogger Carissa Daniel volunteers as a Contributing Editor with Women for Justice.
"I spent 7 years in broadcast journalism--horrified to see what has happened in my old line of work. My own experience with domestic violence led to pioneering work in online domestic violence advocacy and from that into my current love as co-director of Safe and Silent No More. I fell in love with Bernie’s brand of social democracy early in the process of researching presidential candidates and knew I wanted to be a part of supporting him.
I’m a senior at Seattle University (majoring in Communications and film), and a single parent.
Bernie and the people I work with give me hope even at the darkest of times."
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