It is documented fact that I watch too much TV.* Well, maybe watch isn’t the right word. I like to have something on in the background when I am home. Otherwise the silence starts to close in sometimes.
As such, I am privileged to hear all the ads. Turns out there are a lot of ads touching on healthcare, including discussions of high drug prices, wellness, or the latest drugs to treat certain diseases. The one that caught my ear recently was one for GoLo, a “treatment” for insulin resistance. As someone who has insulin resistance, I was curious to find out what they were selling.
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I spend as little time as possible on social media. Partly because I just don’t have the time and partly to save my sanity. The times I do sign on, in addition to a lot of good discussions of the challenges facing our community, I have noticed a good number of chronic and autoimmune patients labeling themselves [insert-condition-here] warriors.
Warriors. That’s a heavy word. It conjures mythic tales of people fighting for all they’re worth for or against something. And I can certainly see how many of us would feel that way. I did, too, for a long time. But then I started to think about who I was fighting.
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I’ve talked about exhaustion going from nuisance to serious. It’s been months since it first became a problem for me. Every day I wake up and I’m not refreshed. My eyelids are heavy, my brain feels tight at the base of my skull, and I am starting to get tired headaches. I never get headaches.
Then there was that little incident right in the middle of the day, when I suddenly got hot, a little nauseous, and rode the edge of vertigo for almost two hours. (Before you ask, I am too young for hot flashes.) Not my finest moment, sitting there at my desk talking to colleagues and pretending nothing is wrong, hoping no one will notice.
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The memory of the worst day of my life drifted over me recently. It happens sometimes, when I’m tired or driving home or my mind is quiet. I used to punch it back from my consciousness at the first stirrings of memory. I am getting better at letting it come, at least when it’s not dangerous (no crying while driving), but I suspect it will haunt me for the rest of my life.
Oddly, it has nothing to do with me. I can take the meningitis, and the diabetes with complications, the kidney disease, cataracts, asthma and all the rest, but I will never come to terms with this one day in the eleven months my mom lived with pancreatic cancer.
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I’m writing this in honor of start of flu season, during which the stakes are a little higher for all of us with compromised immune systems.
I’ve mentioned in other posts that sometimes I feel like my body has a mind of its own, especially when my veins disappear as soon as I go in for a blood test. All of a sudden, a routine procedure I have had done literally over a hundred times becomes a hassle and I end up with matching bruises for my trouble.
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So, this story is a little embarrassing, but it’s for a good cause.
All the chronic and autoimmune patients I know try to keep a close watch on their conditions. No one wants to be surprised when the doctor tells you that you aren’t doing as well as you think you are. But there are ways to keep tabs on your conditions that don’t require a needle and test tubes. This is how I figured it out.
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We all have irrational fears and hang-ups. My weirdest one is probably the fear of getting my foot stuck in a revolving door. It’s never happened, but that doesn’t stop me from stepping out of revolving doors as fast as I can. Not rational, but not worth the effort to correct.
Then there are the problem ones. I didn’t realize it at the time, but tracing back to high school, I’ve always felt self-conscious in certain situations. When I started ninth grade, I had to leave literally all of my friends behind. We had been at magnet schools up until then and all dispersed to our neighborhood schools. Without friends – defenses -- and still in the throes of diabulimia, I was self-conscious about eating in the overly crowded cafeteria. It always felt like people were watching me eat.
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I am finally making significant changes. For years, I have been trying to counteract the effects of an event that knocked me off my diabetes regimen by going back to the routine that worked before. But things aren’t the same as they were then. Primarily, I have gained a significant amount of weight. It’s so simple, so common. But so harmful.
Since my weight finally plateaued a few months ago, I can feel how much harder my body has to work to function. I move more slowly, sleep comes harder and isn’t as restful, all the bad habits I conquered have returned. I have had to quadruple my blood pressure medication, and it’s still the high end of normal. I have had to more than double my daily dose of insulin and four months ago I surpassed the high end of normal. Since then, my numbers have dropped slightly, but not enough to put me in the accepted safe range.
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This is Brendan. He is a former colleague and good friend. Especially poignant this week, he has chosen to share his PTSD story with us. Just like us, he has discovered that sometimes he is just not ok. My heart aches that he is going through this, but I’m glad he has stepped onto the Yellow Brick Treatment Road. Welcome to the club, my friend.
I’m new to the PTSD scene. My trauma most likely comes from my deployment to Iraq in 2005; I didn’t have someone qualified look me in the eye and tell me I had it until very recently. It’s a very strange transition. Part of me always knew my brain was not quite working right in certain situations. The other part of me thinks about people who cannot live their lives at all because they are so traumatized. If I’m honest, I didn’t believe I had the right to not be ok.
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Note: This post is originally from December 19th, 2017
Do you remember Successories, those posters (and so many other products) that had “motivational” sayings on them? Fifteen or twenty years ago, they were everywhere – offices, dorm rooms, and gyms across the country. [Full disclosure: I had a desk calendar. Our office manager chose it.] I suppose the idea was that if you were struggling with Gratitude, Collaboration, Excellence, Integrity, Perseverance, (all those things you’re already bringing to the table), you could just look at one of those posters and muster the strength to be all you could be, to borrow an Army slogan from roughly the same timeframe.
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