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.
Read MoreI’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.
Read MoreSo, 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.
Read MoreWe 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.
Read MoreI 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.
Read MoreThis 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.
Read MoreNote: 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.
Read MoreWhen I was in high school, my mom made one of many trips to the emergency room (ER) with a blocked intestine due to Crohn’s Disease. This visit was particularly memorable because her doctor was out of town and the ER staff was inexperienced in what was then a fairly new treatment – total parenteral nutrition. They inserted the line into her vein in the wrong direction. Let’s just say it was painful and unpleasant.
When her doctor returned, he told her that if she ever had to go to the ER while he was away again, she could tell them how to treat her and they would be legally obligated to do that. I have often wondered how that would work since it is only lately that providers have started really including patients in treatment discussions. (Let’s face it, ER doctors in the mid-1990s would have not taken patient instructions well. Even now it would be . . . unwelcome.) I’ve researched the doctor’s advice from time to time, but could never find a legal authority a process like that would fall under. It took a combination of laws and a discussion with a friend to figure out how it would work.
Read MoreI was going to expand on my mom’s diagnosis story from last week, but then something exciting happened.
I was diagnosed with central cataracts when I was 16, a nice souvenir from the high doses of barbiturates I had to take to recover from meningitis when I was little. They have been growing slowly, as cataracts do, for 26 years. My ophthalmologist says measuring cataract growth is like watching sand move.
Read MoreDo you ever wonder where you came from?
I was listening to a podcast this weekend where a woman who was adopted wondered about the hardships of her birth mother, whether she was wanted, and what worth she had as an unwanted child. Eventually she came around to her own value –everybody has value, no matter what the circumstances of their birth.
Her story might have made me wonder about how I got here, too, but for better or worse, I figured it out a long time ago, with the help of a couple of family stories and a little basic math.
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