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The state of the music industry – The Oatmeal
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"My parents tried to arrange a marriage with an older man who had health coverage and a good income. They told me I would not survive if I did not marry him."
"In late 2006, I decided to leave. It was difficult; he was occasionally violent. […] he pointed out to me that due to America's healthcare system, I was unlikely to survive more than a few years if I left. I reached the point where I did not care."
"I recently got engaged to a supportive man who is very kind and helpful, but I cannot marry him. If I did, I would lose Medicaid. If I was on his insurance plan, he would not be able to afford the medications I need to survive. He'd go medically bankrupt within a few months, and I'd end up risking my life again."
"The hospital eventually called the insurance company and told them they would sue them on my behalf if they did not stop trying to intimidate me into leaving before I was recovered."
Reshared post from +M Monica
How The American Medical System Almost Killed Me
Just a heads up: This post is very long, shocking, and personal. This is your warning.
I keep getting questions about why I use a wheelchair and why I have lupus. I have never fully addressed them; so here you go: a complete explanation. It's a bit long, but if you think it's long to read it, please imagine how long it was for me to live it.
From The Beginning:
When I was 15 years old, in 1995, I was diagnosed with systemic lupus. Lupus is a disease in which the immune system malfunctions, becomes confused, and begins attacking the body instead of doing what it's supposed to do, which is to attack infections and viruses. When lupus flares, the immune system can choose to attack almost anything in the body. One of the things my immune system first targeted was my blood system. When I was 17, I was hospitalized for 3 months with a severe case of hemolytic anemia, a condition in which the body destroys its own red blood cells. After several months, they told my family that I was probably going to die.
The treatment was repeated blood transfusions and high dose corticosteroids as administered by IV. I made a slow recovery, but survived. When I was released from the hospital, I was not strong enough to return to high school full time, but did most of my work at home. I even applied to college. But I was turning 18 and was about to be dropped from my parent's insurance plan; they did not know how else to get me the medications I needed to survive. My parents tried to arrange a marriage with an older man who had health coverage and a good income. They told me I would not survive if I did not marry him.
I was determined to complete college, and so I enrolled, and refused to marry. However, my first semester of college, I was hospitalized again with pulmonary embolism, a blood clot in my lungs. I wasn't able to breathe well and I was in severe pain. The recuperation process was slow and painful. My relatives again pressured me to marry. I gave in. The pulmonary embolism had illustrated their point. Marriage for health insurance is a much more common practice than is suspected in the United States. Many severely ill people marry (or stay married) because without health insurance or medication, they would die. And conversely, some people who are married are forced to get divorced from their spouse for the same reason, so that the spouse is able to survive.
The process of applying for Medicaid can take months, or even years. If you are severely ill, often you don't survive the lengthy process, because you go through it without healthcare. I got married when I was a teenager to someone I did not love because I was told I had no other choice. And perhaps I did not; I look back and I'm not sure what else I could have done.
I became extremely depressed as a result of the arranged marriage. It is horrible to be married to someone you do not love. Because of his income, I was able to get the medications I needed, but my hospitalizations continued through the next 7 years. In late 2006, I decided to leave. It was difficult; he was occasionally violent. And manipulative. Every time I thought about leaving, he pointed out to me that due to America's healthcare system, I was unlikely to survive more than a few years if I left. I reached the point where I did not care. Freedom was worth more to me than survival.
Marriage should never be the main thing that healthcare access is dependent on. But this is our system; health coverage is structured around two things: where you work and who you are married to. This is extremely cost-ineffective for the system, because people who lose jobs or get divorced suddenly find themselves without healthcare; and even if they are not in as serious or dire a situation as me, they end up going to the emergency room for coverage, where a single visit can cost hundreds of times the amount that simply seeing a regular doctor would cost.
When I left my ex-husband, I tried to get a job and try to get my own health insurance. I moved to Colorado, and got a job as a receptionist. I actually interviewed for the position when I had a staph infection in my elbow; after the job interview, I bicycled to the hospital (when you are very poor, you never call an ambulance because of the high co-pays.) You simply cannot afford it.
I got the receptionist position, but never told my coworkers how sick I was during the first few months I l worked there. Eventually, though, I couldn't hide my complications. Several more times I got staph infections in my arms (and once in my blood stream) which were bad enough that I required surgery and multiple day hospitalizations. During one hospitalization, they considered amputating my right arm. In the end they were able to save it after 5 days of IV antibiotics. During the winters, I got pneumonia almost every single year.
My immune system is suppressed so that the lupus doesn't flare, but this means that I catch everything I come into contact with. It is likely I will get pneumonia again this year. My immunoglobulin levels are so low that in March, they began giving me IV infusions of immunoglobulin (IgG) in order to help prevent getting sick. That means, essentially, that my immune system is so impared that a flu or pneumonia shot will not work on me. In 2011, it took me 3 months to get rid of pneumonia. In January 2012, I got MRSA, an antibiotic resistant, skin based staph infection. I was hospitalized twice in April 2012 several times due to persistant case of norovirus.
During the year I attempted to work, from August of 2008 till September 2009, I was hospitalized 7 times. I was a temp, and had found the position through a temporary agency. The company that hired me did not want to hire me on permanently because it was cheapter to just keep me as a temporary worker; I had no health insurance benefits, and the company I worked for would simply get another temp to replace me when I went into the hospital. I had several TIAs (mini-strokes) in my brain during this time. But I disguised the symptoms and kept working to try and afford medicine. I was still on my ex-husband's insurance, but the copays for the drugs I needed cost $17,000 a year. I made just $17,200 in that year at my job. As I began to run out of money, I started rationing my medication. I started living on the cheapest foods I could find to survive; rice and Gatorade. Lack of proper nutrition further damaged my body. And then eventually I ran out of money to pay my rent.
I had no car. I was dependent on public transportation. This was risky; I developed a condition in which I began to pass out when I stood up or walked for long periods of time. Several times this happened on a bus; I would be sitting and riding the bus, and suddenly, I'd pass out. The first time it happened, I woke up slumped forward, with my head hitting the seat in front of me. I'd be awake and aware, but not physically able to move for 10-15 minutes. This has since been diagnosed by my neurologist as a neurocardiogenic syncopy. It's basically a miscommunication between my brain and my heart that leads to my blood pressure suddenly dropping and my passing out without warning. The syncopal episodes (times I pass out) are worse in the winter. This is why I use a wheelchair sometimes, especially when the weather is cold.
I am also half blind, in my left eye. On a Saturday morning, May 2, 2009, I woke up and I could no longer see out of my left eye. While I'd slept that night, I'd had a huge central retinal vein occlusion. My doctor admitted me to the hospital and they did chemotherapy to try and control my immune system. Chemotherapy is used as a last-ditch type of therapy in very severe lupus flares.
The vision loss is now unfortunately permanent. I was told by the retinal specialist I see that I may lose the sight in the other eye at any time. Usually I do not think about the possibility of going fully blind; I'd rather not think about it. Other things endanger my vision; I have cataracts from long term, high dose steroid use which will eventually have to be operated on. And in January 2012, when I caught MRSA, it also got into my right eye, the only one in which I still have vision. Thankfully, it cleared up by March 2012, with no permanent vision loss.
In 2010, the divorce with my ex-husband was finalized. I lost insurance coverage as a result. I applied for disability and Medicaid immediately afterward, but I went into the hospital 3 times in the 3 months immediately following. I had dozens of pulmonary embolisms in my lungs. The good thing about this is that it resulted in Medicaid getting sped up for me. Normally it takes longer than 3 months, but because I had been hospitalized in the ICU, the hospital put pressure on the government help get me Social Security and Medicaid faster than normal. Unfortunately I had to almost die for this to happen. I was costing them thousands and thousands of dollars for each day I stayed in the ICU. This system is not cost effective for the taxpayer; and it is immensely degenerative and cruel to the people who go through it.
I am now able to get the medications I need. But I'm dependent on Medicaid for survival. If it is cut and the medications I need are no longer available, I will have more strokes, pulmonary embolisms, and I could go into a coma due to adrenal crisis. My adrenal glands have atrophied after being on prednisone for years, so I will have to remain on long term steroid use for the rest of my life.
I dealt, and still deal with pain from arthritis, fibromyalgia, nerve pain, and pain from lupus. Many of the things that make one type of pain better unfortunately make another type of pain worse, so managing it is a balancing act.
However, I try and hide it. If you see me here on Google plus, in hangouts (live video chat), you will probably notice most of the time I'm sitting or lying down, logging in from bed or a recliner. Sometimes you'll see me log in from the hospital, getting an infusion, or just hospitalized.
On a normal, average day, my pain is about a 7 on a scale of 1-10. When the pain is worse, I usually don't hang out. On those days I'm just trying to cope.
One thing I want you to keep in mind about my history and my story is that I choose to see the positive in my life, because indeed, seeing just the negative is not an option. Lupus flares are often stress-induced, and if I dwelt continually on the negative, I wouldn't stay alive for long. I must see the positive aspect of life in order to survive. I am deeply, deeply invested in survival. I'm very proud that I am alive in 2012. This was not projected by my doctors when I was originally diagnosed. They felt I would be lucky to live to see 25. Despite the pain, I've enjoyed my life very much. Perhaps that's all we can ask of life in the end.
I read everything I can about my disease to educate myself about the medications I take and therapies available to me, and I strongly feel that education is the best weapon in fighting back against a broken and ineffective healthcare system. It is what has kept me alive and going for this long.
Here's The Summary
I have been extremely lucky to survive as long as I have. Most of the things I have been through should have killed me; it has been like dodging bullets. It's really tough to try and explain my history to new people I meet, so I just don't usually try. This post is one of my first efforts to explain the technical details and the emotional cost of my struggle.
I recently got engaged to a supportive man who is very kind and helpful, but I cannot marry him. If I did, I would lose Medicaid. If I was on his insurance plan, he would not be able to afford the medications I need to survive. He'd go medically bankrupt within a few months, and I'd end up risking my life again. So we are just engaged and will remain that way until the healthcare system changes. This is a common problem for people in positions like mine.
Why Do I Share This Story?
I think a lot of people misunderstand why I share this. I don't share my story because I need help, or because I want your help to save my life.
In truth, I'm far past that point. And I'm ok with that. I have someone who helps me with my physical struggles, and understands me, and takes the best care of me possible. I am really grateful for that. I am happy where I am.
The reason I share what happened to me is because the system is a threat to you and the people you love, and I suspect you do not even know this, as you read my story. What happened to me could happen to you, or someone you love.
The inefficiencies and costs of our system are bankrupting, and killing, even as we speak, children, teenagers, adults, entire families. And if I stay silent about what happened to me it's just self-perpetuating when it doesn't need to be this way. And all of our tax go to maintaining this broken and twisted system.
Even if you have a stable, above average income in America and think you are fine, it takes only the severe illness or diagnosis of a child with cancer, long term, to send your own family into this sort of spiral- and then you must cut that child loose, as my family did to me, and watch them go through what I went through, in order to keep from spending every penny you own on them. It's a harsh but true reality.
A question people commonly ask me is: "Are you going to be all right?"
The best answer I can give you is: I'll try. Everything I've done since I was 15 years old was with the end goal of survival in mind. The best thing you can do to help me survive is advocate for the government not to cut Medicaid. The Supreme Court is currently deciding the fate of Medicaid underneath Obama's healthcare bill; depending on their decision, funds for the program could be drastically reduced while increasing the amount of the people in Medicaid to the bottom 30% of the population. That would not be good for people like me; it would result in many medications and services being cut.
We need a long term solution in the form of a single-payer healthcare system. We need it very badly. The health insurance companies and drug manufacturers conspire to squeeze the maximum amount of profit out of the system, and in cases like mine, they don't care if you die in the process. I found this out when the insurance company I had through my ex-husband, United Healthcare, tried to force me out of the hospital right after I did the chemotherapy in 2009. I'd been hospitalized for several days, and apparently they felt this exceeded the limit I was entitled to because of the diagnosis my rheumatologist had admitted me under, even though I was not well enough to leave. First the insurance company went to the doctors and tried to get them to discharge me from the hospital; when my doctors refused, saying that would be dangerous, a nurse from the insurance company then called my cell phone. She told me that she was with my insurance company, that she could see my medical record, and that I was well enough to leave the hospital, and threatened not to cover the cost of the stay if I didn't leave. I was already rationing my food and medicine, because I was slowly going bankrupt. Scared of huge hospital bills I couldn't pay (and homelessness that would follow) I attempted to leave. I passed out in the process.. My heart rate dipped dangerously low, so I was rehospitalized in the cardiac unit. The hospital eventually called the insurance company and told them they would sue them on my behalf if they did not stop trying to intimidate me into leaving before I was recovered.
This is what happens with companies that are after the bottom line: profit. Dollars are what matter. Lives are secondary when profits are the goal.
My medicines would not be that expensive if the drug companies and insurance companies were better regulated; in a single payer system, the government sets the price for medications that they are willing to pay, and the drug companies have to accept it. But we have a system where the cost of medications can be astronomically high.
Right now, the system only profits if, when you are chronically sick, you are dropped from their insurance, or you die. The American healthcare system exists to bankrupt and exploit the most vulnerable, who, lack the tools or strength to fight back.
By the way, if you see me on hangout, I don't usually want to discuss America's healthcare system. I get really stressed out about it when I do. I don't mind helping you with your issues if I can be of help to you; but I usually prefer not to go into the details of my past and how the system wore me down. They're very scarring to remember.
I come on Google Plus so I can forget about it. Hangouts and the interaction I get with people has changed my life. For years I have gone in and out of the hospital and felt horribly lonely. Hangouts are a fantastic tool for people with a severe disability. Now I get to interact with people around the world. It's amazing. Google is to be commended for creating a life-changing tool which revolutionizes the lives of the disabled.
And thank you, btw, for reading this post. It's hard to condense 15 years into several paragraphs. People like me usually don't get the chance to share their stories because when their condition gets as severe as mine, they've usually dead by now. I, however, by luck or chance, am still alive. This my testimony as to the cost of that survival.
This post was originally written in October of 2011. I have since summarized my mentality of life, and living day to day here: https://plus.google.com/117665613028757061169/posts/JULXTRyqUtp It focuses on how I counter the harsh reality of my day-to-day existence and chronic pain by appreciating, and enjoying, the things I can, in the time that is available to me.
The picture attached below is my hospitalization when I went fully blind in my left eye, in 2009. A friend had brought me my favorite food, crab, for dinner.
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