After visiting a friend in the hospital today, I saw myself reflected in her eyes. She has been through so much. A year and a half ago she was diagnosed with Lou Gehrig's disease and sent home to die. By a freak accident she was seen at Mercy San Juan hospital for something entirely different. She had an x-ray and it was discovered that all the bones her in neck had collapsed and she was in imminent danger of becoming a quadriplegic. She was scheduled for surgery and came through it like a champ. She didn't have Lou Gehrig's disease, it was just her old nemesis Rheumatoid Arthritis. Fast forward to today.
This bout with pneumonia nearly killed her. She spent 14 days in ICU and now she faces time in a rehab and will no longer be able to go back to the home she loves. She has been on methotrexate for years. Her immune system, like mine, is nonexistent. She said she no longer wants to live and wishes the friend who found her on the floor had left her there. She has had her back rebuilt and her neck. The insidious disease has eaten the joints in her fingers and the pain she lives with is overwhelming. Now they've taken away her methotrexate so she can heal from the pneumonia leaving Rheumatoid Arthritis to savage what bones she has left.
Her hospital doctor came in to see her and he immediately recognized me, which was incredibly surprising as I am sure he must see thousands of patients. He remembered me because of the rarity of my disease. Not the Crohn's problem but the autonomic one. He was very sympathetic about such a rotten diagnosis, but I said, "Hey, I'm sitting here so that counts for something!" I told him I'd just gone to the gym where I did my recumbent exercises, drove my car to Baskin Robbins to get my friend her favorite Mocha Almond Fudge ice cream AND I drove my car to the hospital where I WALKED to my friend's room. The last time he saw me I couldn't walk from my bed to the bathroom. While I couldn't quite convince him that I was improving, he did buy into the idea that a good state of mind can do wonders.
Which depressed the shit out of me. I want someone to buy into the idea that I will recover completely and so far I haven't found anyone. But hey, I know I have time to finish my Gemini series and since I discovered the JOY of having my computer read back to me the words I write, my life has changed for the better. I no longer dread the downtime on my couch which is good since come 1pm I am there for at least 4 hours. I am not a television watcher so thank God I can write, well, so long as the brain is functioning which the drugs totally help. Without the Midodrine I would be a useless bit of meat twiddling my thumbs. My worst times are in the mornings, but I have Karen and Dennis to help me when I forget what I am doing. Early morning is generally the worst time for people with Peripheral Neuropathy of the Cardiovascular System, Postural Orthostatic Tachycardia Syndrome, and Sinus Tachycardia. Is it any wonder I don't answer when people ask me what's wrong? Seriously.
For Christmas we went out and bought a huge L group that has four recliners built in. I can rotate around the couch if my neck gets stiff or I can play musical chairs with the gkids if I want. I have so many things to look forward to. My firstborn grandson is getting married. The thought fills me with joy. They are so much in love that you only have to look at them to realize that they will be good together. And I won't lie and say that the prospect of little feet running around the house is also something to look forward to.
Unlike me, my friend is limited in the people she can reach out to. I hate the fact that she has to worry about rehab care should she be unable to get back on her feet. I hate the fact that she has to worry about money and health care and rehab care and rent and food. I hate that she is so alone. I try and tell her that once she loses everything she will have access to free healthcare, free rehab care, free rent and food. She wants to be independent, has always lived her life independently and now she can't.
Just fuck.
This country needs some sort of healthcare system. I don't know what would work best, but certainly we should not punish the middle class by making them poor. Why should healthcare companies make millions of dollars off the backs of suffering people? The drug my husband was prescribed for his autoimmune disorder is 15,000 per month. Can you fucking imagine? That is ridiculous! We applied to the company for financial assistance. That was a month ago and so far no word. Now he has a shot each week in the ambulatory treatment center at our local hospital. That shot is covered because it is in hospital, but the medication the doctor would prefer he take is a pill and can be taken at home, hence the cost of 15,000. This system is broken beyond repair. We need someone who can put together a system from the ground floor up.
And now I am off to edit where I can get lost in the world of my dreams. Have a great day!
This bout with pneumonia nearly killed her. She spent 14 days in ICU and now she faces time in a rehab and will no longer be able to go back to the home she loves. She has been on methotrexate for years. Her immune system, like mine, is nonexistent. She said she no longer wants to live and wishes the friend who found her on the floor had left her there. She has had her back rebuilt and her neck. The insidious disease has eaten the joints in her fingers and the pain she lives with is overwhelming. Now they've taken away her methotrexate so she can heal from the pneumonia leaving Rheumatoid Arthritis to savage what bones she has left.
Her hospital doctor came in to see her and he immediately recognized me, which was incredibly surprising as I am sure he must see thousands of patients. He remembered me because of the rarity of my disease. Not the Crohn's problem but the autonomic one. He was very sympathetic about such a rotten diagnosis, but I said, "Hey, I'm sitting here so that counts for something!" I told him I'd just gone to the gym where I did my recumbent exercises, drove my car to Baskin Robbins to get my friend her favorite Mocha Almond Fudge ice cream AND I drove my car to the hospital where I WALKED to my friend's room. The last time he saw me I couldn't walk from my bed to the bathroom. While I couldn't quite convince him that I was improving, he did buy into the idea that a good state of mind can do wonders.
Which depressed the shit out of me. I want someone to buy into the idea that I will recover completely and so far I haven't found anyone. But hey, I know I have time to finish my Gemini series and since I discovered the JOY of having my computer read back to me the words I write, my life has changed for the better. I no longer dread the downtime on my couch which is good since come 1pm I am there for at least 4 hours. I am not a television watcher so thank God I can write, well, so long as the brain is functioning which the drugs totally help. Without the Midodrine I would be a useless bit of meat twiddling my thumbs. My worst times are in the mornings, but I have Karen and Dennis to help me when I forget what I am doing. Early morning is generally the worst time for people with Peripheral Neuropathy of the Cardiovascular System, Postural Orthostatic Tachycardia Syndrome, and Sinus Tachycardia. Is it any wonder I don't answer when people ask me what's wrong? Seriously.
For Christmas we went out and bought a huge L group that has four recliners built in. I can rotate around the couch if my neck gets stiff or I can play musical chairs with the gkids if I want. I have so many things to look forward to. My firstborn grandson is getting married. The thought fills me with joy. They are so much in love that you only have to look at them to realize that they will be good together. And I won't lie and say that the prospect of little feet running around the house is also something to look forward to.
Unlike me, my friend is limited in the people she can reach out to. I hate the fact that she has to worry about rehab care should she be unable to get back on her feet. I hate the fact that she has to worry about money and health care and rehab care and rent and food. I hate that she is so alone. I try and tell her that once she loses everything she will have access to free healthcare, free rehab care, free rent and food. She wants to be independent, has always lived her life independently and now she can't.
Just fuck.
This country needs some sort of healthcare system. I don't know what would work best, but certainly we should not punish the middle class by making them poor. Why should healthcare companies make millions of dollars off the backs of suffering people? The drug my husband was prescribed for his autoimmune disorder is 15,000 per month. Can you fucking imagine? That is ridiculous! We applied to the company for financial assistance. That was a month ago and so far no word. Now he has a shot each week in the ambulatory treatment center at our local hospital. That shot is covered because it is in hospital, but the medication the doctor would prefer he take is a pill and can be taken at home, hence the cost of 15,000. This system is broken beyond repair. We need someone who can put together a system from the ground floor up.
And now I am off to edit where I can get lost in the world of my dreams. Have a great day!
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