Oddments

In search of story


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January 8.18

This conflagration, dear reader, was my birthday cake last night. Today is the actual date (yes, me and Elvis), but last night was the family do. What makes this flaming cake blog-worthy is the arrangement along the far arc of it. If you look closely and use just a little imagination for the emoji candles, you will see (I’ve no doubt) that the 1001011 is my birthday in binary. My family, ladies and gentlemen! Undeterred by the lack of a 7 and a 5, they devised a binary 75! I seemed to be the only one at the table to be slow on the pick-up. Yes, yes, I know what “binary” means, but it is hardly where my brain goes when I don’t have the right candles!

You may note the second cake. My daughter-in-law, in all other ways an exemplary person, does not like frosting. So there is always an angel food cake for her. Full disclosure: no one objects to having a piece with her.

Now to real life: I lay me down last night after a full day which followed one of those rotten sleepless nights. Of course I couldn’t fall asleep. This is partly age, partly my lifelong struggle with insomnia, partly too much binary cake. After about an hour, I drifted off. At 1:20 I was awakened by chirping. Yes, chirping! One of these wretched alarms was chirping! Which one, and what would I do about it in this new house?

You may know, dear reader, that any venture in the wee hours starts with a trip to the bathroom, and that’s where I saw all the blood in my mouth. How long had that been going on? I rinsed and spit and spit and rinsed. It’s this blasted HHT, as you may know if you’ve read my blog for long. It took a few shaky minutes to stop it.

The bleeding stopped but not the chirping. There I was, at 1:30 in the morning, atop a ladder at the top of the stairs, feeling woozy and not at all patient. I couldn’t figure out anything about the rotten thing. So it continued its own happy-birthday song to me. And it continues now with its soothing beepathon.

And so begins my 75th birthday. I have broken my rule of the 300-word blog post limit, which I have abided by almost unfailingly. But it’s my birthday and I’ll write if I want to.

 

 


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In our blood

Thunder woke me. In those first micro-seconds of brain fog, as I instinctively struggled against the waking, I felt something in my mouth. I tasted it. Groaning, I willed my body to move and bumped my way into the bathroom where the mirror confirmed it: a mouth full of blood. It looked like red paint all over my teeth and tongue.

So there I was, in the wee-hour pounding of an Indiana summer storm, spitting blood into the bathroom sink. Spit. Rinse. Repeat. Try not to throw up.

“A mouth full of blood.” It sounds absurd. Who am I — Dracula?

It took a photo to clarify to my doctor what I meant by “mouth full of blood.” She whisked me to an otolaryngologist, who diagnosed HHT Syndrome, also known as Osler-Weber-Rendu Syndrome. Hereditary Hemorrhagic Telangiectasia is an uncommon genetic disorder which causes abnormal blood vessels, and it gets worse with age. Swell. As though aging doesn’t bring surprise enough.

I was born with this but didn’t know it until 70 years later. Apparently my dad was born with it too but he never knew. His long history of nosebleeds foreshadowed my own and revealed the source of the problem gene (thanks, Dad).

Nosebleeds. “Piffle!” think people who don’t know better. After all, who hasn’t had a nosebleed? Right. But HHT is not about your run-of-the-mill nosebleed. And it isn’t just about nosebleeds, which are bad enough. HHT is about missing capillaries, about tiny abnormal blood vessels (telangiectasias) that rupture and can lead to anemia, about large abnormal blood vessels (AVMs) which can be life-threatening. It’s about hearing doctors say “I’ve read about it but never had a patient with it.” It’s about all the ramifications of having an atypical vascular system.

For me, it’s been about learning not to take ibuprofen or fish oil supplements or melatonin, about watching my intake of fish, raw cranberries, red quinoa, famotidine. About having ocular migraines. About avoiding vasoconstrictors. It’s about learning that HHT was the likely reason for my post-tonsillectomy hemorrhage circa 1948.

It’s about living with and aging with a disorder largely unknown to doctors and dentists but sharply relevant to their treatments and procedures.

It’s about wondering if small hemorrhagic strokes contributed to my father’s dementia, and if I have passed this on to my children and grandchildren.

It’s about bleeding from my nose and mouth, and knowing that I might some day bleed from ears and face since I also have telangiectasias there. It’s about knowing that internal bleeding is possible. It’s about knowing I am luckier than many others with HHT.

June is HHT Awareness Month, and this is my part.