I wanted to repost this amazing article written by a friend because it really describes a reality I deal with every day. For people who think that sick people who are disabled or sitting at home just enjoying not having to work, this is what we deal with every day. We don’t get a single week off. Every day there is a doctor to call, a lab to get done, an insurance call to make, a medicine to pick up,I wanted to repost this amazing article written by a friend because it really describes a reality I deal with every day. For people who think that sick people who are disabled or sitting at home just enjoying not having to work, this is what we deal with every day. We don’t get a single week off. Every day there is a doctor to call, a lab to get done, an insurance call to make, a medicine to pick up, and that’s all without counting the time you spend actually being sick, which we often don’t have time for.
I’m re-posting this on my blog as well as in support groups for my specific condition. Many people with my condition also suffer from cancer. But these tips are definitely universal. And they are especially appropriate if you are a Type A personality, and struggle with your inner Karen when you are being ignored, patronized, or just plain treated like you don’t matter. I will be printing this list to remind myself of things I can do besides snapping someone’s head off.
I hope someone else finds it as helpful as I do.
Some of you may remember the posts I’ve written about how I often feel dehumanized at the hands of the American Healthcare System. Looking back, I …
Powerlessness
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Published by Gladys D. Smith-Mangan
I’m a 47 year old mom to 3 kids and grandma to one, a military brat, a music lover, a widow, and an involuntarily retired attorney who got smacked with the most sarcastic and ridiculous disease on earth, completely changing the future I had worked so hard for, and the plans I had for myself and my family. I have a 26 year old stepdaughter who has my 8 year old granddaughter, along with my 21 year old daughter and the baby, my 12 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger.
My condition, Churg Strauss Syndrome (CSS), or Eosinophilic Granulomatosis with Polyangitis (EGPA), as it is currently called, is sarcastic and ironic, just like I am. It is an autoimmune vasculitis that causes inflammation, and one of the primary symptoms is an intolerance to nonsteroidal anti-inflammatory drugs (NSAID’s). And that irony and sarcasm just carries on throughout the entire journey. One thing it is not: boring.
It is diagnosed in only one to two out of every million people, and was featured on the fifth episode of House MD, if that tells you anything about how rare it is. It is most evident for me in the way it made my asthma go from completely controlled to uncontrolled, no matter what we do.
I’m currently on a low dose of chemo and a biologic in addition to prednisone, and trying to wean off.
My previous life was being a family law attorney. I try to assuage my guilt about my daughter not seeing me as a professional working woman by volunteering as much as I can.
People always tell me I should write more, so here we are. Maybe my escapades can make somebody else laugh, or make someone feel less alone if they are dealing with similar circumstances. If nothing else, it will be something for my kids to be able to read later in life to remember who I was.
Until then, I plan to live the hell out of every single day I am given. And laugh as much as I can, when it won’t cause an asthma/coughing fit. I truly believe laughter is the best medicine. (When it doesn’t cause a deadly asthma attack.)
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