I am writing this story not to place blame, but to share my story of how an inadequate health care system has had a negative impact on my life. I am only a single example of how a bad system can destroy a potentially strong link, and I would prefer that such things do not happen en masse due to the proposed health care bill. I was diagnosed with Systemic Lupus Erythematosus at the age of 7, in 1977. At that time, it was almost a death sentence. People died from the disease, and my pediatrician did all he could to keep me alive. Facing potential kidney failure, he put me on a dosage of steroids (Prednisone) higher than even an adult should have taken. This daily dose was part of my medical regime for a year, and while it may indeed have saved my life, it has also - to some extent - ruined it, which is the purpose of telling you my story today. The high dosage of steroids marched through my body like a determined soldier, affecting my body in various ways. Stunted growth, delayed development, Cushing’s syndrome, mood swings, and the worst – softening of the bones. Unfortunately, there was little warning about these symptoms, and when I was well enough I still wanted to be a child – to run, play, climb trees, ride bikes, take dance classes, ice skating, roller skating – and by the time a new pediatrician did warn me of the dangers, it was too late. At age 11, several verterbrae in my upper spine collapsed, just from sitting at the piano. Then, it was discovered that my hip joints were already beginning to disintegrate – avascular necrosis of the hips at age 12. I was too young and too sick for a hip replacement at that time. After age 18, it was decided to monitor my condition, as hip replacements did not last very long, and the longer we could wait, the better it would be, so as not to have the risk of more surgeries than necessary in my lifetime. I persevered. I did well in college, then started a Master’s. I worked full-time. But I had to decline a scholarship to go to law school because the pain had made day to day life more difficult. By the time I was in my mid-20’s the pain was severe. I had to normalize the pain and keep going, as I was someone who refused to “lie down” in the face of my illness, but I went to the orthopedist to inquire if it was indeed time for my surgery. This doctor told me no, because insurance wouldn’t pay for it, as it would be considered “elective” surgery, since I could still walk. Stunned, I left his office in tears. My only choice was to keep going, and endure. At that time I was living in Tennessee. Slowly, my ability to function normally worsened. I couldn’t work as many hours. I couldn’t be active. Yet still, I could walk, so the surgery wasn’t available to me. Yet I got lucky. I got married and moved abroad. We settled in Germany, and within a couple of months of moving to Germany I could no longer walk without the support of crutches. The pain had gotten unbearable, and so I consulted an orthopedist here. The look of shock and pity on his face when he first saw my X-ray told me how bad it was, and I proceeded to see this look many times as I consulted surgeons and planned my surgery. The damage was so extensive to my left hip that the bone had not developed properly – it was smaller than the average implant, and a custom implant had to be made. My pelvis had tilted 6cm in an effort to protect the left hip, which had broken several times. When the doctor asked why I hadn’t had the surgery in the U.S., I told him it was because they said it was elective surgery. The look of disgust and anger on his face was palpable. I was told that damage so bad took decades to occur, and it was likely that surgery would have been necessary when I was 18. In fact, had I lived in Germany, it would have happened at 18, despite any risks, because it is considered a quality of life issue. Imagine that: a health care system where proper treatment is based on improving a patient’s quality of life. Unfortunately, the successful hip replacement surgery (both sides – I make quite the buzz at airport security) is not the happy ending to my woeful tale. It has been three years since the operation on my left hip, and I am still experiencing severe pain. My range of motion is improved, my stamina is better, and the pelvis is almost back to normal (1cm difference). Yet I can’t sit for more than an hour without feeling discomfort, I can’t stand in one position for more than a couple of minutes without a lot of pain, and often I can’t even rest comfortably in bed. I walk and exercise as much as I can, but obviously I must be careful. I see a physical therapist twice a week, which helps as well. I must take pain medication on a regular basis. All other possibilities have been ruled out, and my orthopedist has concluded that the pain is the result of so many years of degeneration and the terrible condition of my hip, and the pain is possibly chronic. In essence, by refusing to make a small investment in my health care, my potential was squandered: including years of work, academic achievement, and productive contribution to society. I am facing the reality that I may never know a life without pain. It is a small thing, compared to a lot of other people. Still, after 40 years of pain, the end result of my successful hip replacement surgeries was expected to be no more pain, or at the very least, very little pain – and knowing that I face more pain, with no confirmation that it will end, is daunting to me. I won’t give up. I have no reason to. I live in a country with a health care system that takes exceptionally good care of me. The U.S. should perhaps look into the German system, if Congress is having trouble trying to “fix” ACA. I know there are also a lot of good ideas out there, from some Democrats and Republicans. The citizens of the United States of America deserve a good health care plan. People are more productive and happy and spend more money when they don’t have to worry about what happens if they get sick, and these are all crucial requirements for a successful economy. Alas, I digress, my story is told, and you know what you have to do.
Universal healthcare makes life with chronic illness just a bit easier #DAresists #Medicare4all
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