Saturday, September 27, 2014

Collapsing Kids

Kids keep collapsing, and it’s making me mad. Children are trusting us to make sure they are OK. We are the adults here.

I’m not advocating for unnecessary testing like in The New Yorker article “The Cost Conundrum”. A good read whether you’re in healthcare or not.

My maternal grandmother died of congestive heart failure in her 50s. My paternal grandfather died of a heart attack in his 50s. I never met either of them. 

Bottom line: Medicine failed me. It failed me and has failed others. 

When I think about how a simple ECG or EKG could have helped me avoid this makes me furious. I know I don’t have the answers, but I am still allowed to be upset. 

Those who knew me around school age probably know there wasn’t an athletic bone in my body. What many might not realize or remember is that I went to volleyball camp the summer before my freshman year of high school. I had a sports physical then. 

My parents were both protective and proactive. I don’t blame them. It’s just that it would’ve been nice to know there were three holes in my heart. A simple ultrasound would have alerted someone to the fact that further testing could’ve been beneficial. “Zut alors! Your heart looks like Swiss cheese. Maybe you should have some further testing, especially given your family history,” a savvy doctor might have once said.

I know the research says about one in 300,000 student-athletes actually has a problem. That’s too many. It’s just too many.

Wednesday, September 24, 2014

No Landmarks

I can’t say I passed any major milestones since my last blog. I did, however, go see a band on Chris’ bucket list (Weezer). I also wanted to see that band, and another (The 1975). The venue was nice and accessible (Sporting Park). There I go sounding all old again, but the truth is that I am in a wheelchair, and I can’t walk or talk. I am also fighting an “old person’s problem”. Only it’s not. Please see NOPW or Dr. Oz from Friday, Sept. 12. Or click here.

I also stopped by IKEA. Yes, IKEA. Very close to where I reside, consequently. I went to IKEA before it opened to the public. Thanks to my very talented brother and sister-in-law with Anecdotally Yours. They documented the grand opening festivities and got us an early pass. It was perfect. I consider myself a superfan, but not a camping-out-enthusiast. I don’t do crowds and sleep-deprivation. I will stay away now. At least for a while. Also, I am not a morning person, for those who might suggest a.m. visits. It’s like it has gotten worse with age.

Sunday, September 7, 2014


It was a week of landmarks. First of all, my little brother’s 30th birthday was last Sunday. He had a hilarious party at a roller skating rink. How very early 90s of him. I wasn’t around then, but I am just guessing based upon movies or something. Just kidding. He is my baby brother, after all. I wouldn’t be female if I never mislead anyone about my age.
Chris and I celebrated our 10th anniversary on the 28th. Initially, we had planned a trip to a really nice restaurant in Chicago, but my stroke happened. Instead, we went to the Kansas City Zoo. Chris took the day off and whisked me away to the zoo. We hadn’t yet seen the penguins. At 10 a.m., the penguins had their feeding. They also had a painting for us. One of the penguins stepped in hot pink paint and walked onto a black canvas. Their handler held it up, then brought our painting out to us. Next, we met a young woman whose husband also had a stroke, but was given TPA, or the clot-busting drug. Then, we went around the zoo via train, tram and boat. While on the tram, I heard a young girl asking her mother what happened to me. I had Chris explain. During the weekend, I overheard three children wondering aloud what happened to me. They will rule the world (and maybe find a cure) someday.
The penguins at the zoo painted us a picture for our anniversary.
Second, Chris took me for Botox. It probably sounds weird, but isn’t. I have been getting the shots ever since I came back to the Kansas City area. It works very well for me. I thought I was going about two weeks later, so it made a big difference to me.
Now I will talk about Chris. I can’t go to a hospital or rehabilitation facility without hearing that he is remarkable. I know. I know, and am thankful. Anytime I say anything about it he says, “what kind of person leaves?” Good question. But the sad truth is that many people would have been long gone. Chris says I would have done the same thing. He is still my best friend and my heart still skips a beat when he is near. I could go on and on, but I will spare you for now. 
The night after our anniversary, three of my friends came over. These particular friends are rare. I met them when I was in eighth grade. They were all bridesmaids in our wedding, and have seen me at my worst. I won’t say best because I haven’t even seen it. When I told my caregiver we were going to see the Goo Goo Dolls, she asked who and I felt old. I also felt advanced in age when the lead singer mentioned that the song we were about to hear was 20 years old. 
But now back to Chris. I know I said I was finished, but I lied. I would rather be Mrs. Wilson who also had a stroke than not be Mrs. Wilson at all. I also have a lot of empathy for him. And there are many more landmarks to come.