Knowledge is Power
My sister recently died from an incurable lung disease - Idiopathic Pulmonary Fibrosis. She was diagnosed the autumn of 2014. The average person lives around four years after diagnoses, with the lucky ones being approved for and surviving a lung transplant.
Although I think ALS is still the most terrifying disease I can imagine living with, Pulmonary Fibrosis is a close second. It progresses in steps. One day you can for example - get in the tub yourself, bathe and get out, and then the next day, you don't have enough energy to get out. Once the disease has progressed there is no backtracking. After coasting for a few years with very little disease advancement, this time last year she began to use oxygen when out and about.
Marilyn and her partner were not Internet savvy. They did not have a computer and she had stopped working just around the time that it all became mainstream. If she had been able to research her disease - she would have lived longer. If she had been able to find support groups online - she would have lived longer and she would not have felt so isolated.
Winter came early, and the cold made it uncomfortable to breathe outdoors. She became housebound, then depressed and ate Cheese Whiz and chips all winter long - not exercising at all. In December I began to order books for her from the library and would visit when I could, making her and Larry soup and bringing a craft. We spent a lot of time together laughing, and sharing memories.
My apologies to my friend Tracy in Ohio who has been kicking cancer in the balls for years - because I ignorantly compared her ability to fight cancer to my sister's inability to fight back at her lung disease. Marilyn would have lived longer in the good old health-care days, where doctors were gods and the medical team had your back 100%. Marilyn would have lived longer if she had been connected to the ample information out there and been able to research her disease.
We have to advocate for ourselves. If Tracy had sat and stewed, and not researched, badgered, emailed, stalked her specialists and insurance company, she wouldn't be around right now either. If Marilyn had more chutzpah, she too would be alive right now.
Although I think ALS is still the most terrifying disease I can imagine living with, Pulmonary Fibrosis is a close second. It progresses in steps. One day you can for example - get in the tub yourself, bathe and get out, and then the next day, you don't have enough energy to get out. Once the disease has progressed there is no backtracking. After coasting for a few years with very little disease advancement, this time last year she began to use oxygen when out and about.
Marilyn and her partner were not Internet savvy. They did not have a computer and she had stopped working just around the time that it all became mainstream. If she had been able to research her disease - she would have lived longer. If she had been able to find support groups online - she would have lived longer and she would not have felt so isolated.
Winter came early, and the cold made it uncomfortable to breathe outdoors. She became housebound, then depressed and ate Cheese Whiz and chips all winter long - not exercising at all. In December I began to order books for her from the library and would visit when I could, making her and Larry soup and bringing a craft. We spent a lot of time together laughing, and sharing memories.
My apologies to my friend Tracy in Ohio who has been kicking cancer in the balls for years - because I ignorantly compared her ability to fight cancer to my sister's inability to fight back at her lung disease. Marilyn would have lived longer in the good old health-care days, where doctors were gods and the medical team had your back 100%. Marilyn would have lived longer if she had been connected to the ample information out there and been able to research her disease.
We have to advocate for ourselves. If Tracy had sat and stewed, and not researched, badgered, emailed, stalked her specialists and insurance company, she wouldn't be around right now either. If Marilyn had more chutzpah, she too would be alive right now.
My deepest sympathies, Lois, on the death of your sister. I'm glad you had that time together over the past year, laughing and making crafts together. Those are precious memories to cherish now.
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