Tag: vitiligo

My brain, ears, skin, innards

The Wordle word for Sunday, August 6, 2023 was POLYP

I was going to write a comprehensive report on my health. But it became complicated and lengthy, so I’ll break it up. Today, I’ll concentrate on my brain, ears, skin, and another part.

BRAIN: When I attended a Juneteenth event, one of the tabling organizations was doing research into the brain. Specifically, they were checking people for mental acuity and cognitive decline.

I went to their office a few weeks later and took paper and pencil tests. Also, they swabbed the inside of my cheeks. Two weeks later, I got the results. The apolipoprotein E (APOE) genes from my parents are 3,3. This means I have an average chance of developing Alzheimer’s. APOE 2,2 is the best, which only 8% of people have, and people with  4,4 are most at risk.

It’s too hard to explain, so read this article about tau. For me, this is fascinating stuff.

EARS: My wife complained that I did not hear well. I found this odd because I would be in a room during conversations and pick up information she missed.

Still, I went to the ENT place. I had wax buildup. I did not know some information: you shouldn’t use Q-Tips or the like in your ears, not so much because they’ll hurt the eardrum as much as they’ll help the wax to become impacted.

About an hour later, I had a hearing test. I am missing higher-pitched sounds in my left ear. I blame Pete Townshend! At some point, I’ll get some treatment.

Vitiligo

SKIN: Back in January, my dermatologist gave me a prescription for  Ruxolitinib (Opzelura™), which is “the only medication approved by the U.S. Food and Drug Administration (FDA) to restore lost skin color in people who have vitiligo.”

Unfortunately, when I took it to the CVS, I was told it would cost me several hundred dollars. I’m still trying to negotiate this issue months later. It’s not just vanity. I’m more prone to skin cancer now than I was in the past.

Inside look

COLON: Both my wife and I had colonoscopies in the past two weeks. The last time I even MENTIONED having one, I was told it was TMI. I disagreed then and now. I’m a fan of regular testing with colon cancer on the rise, particularly among those under 50.

Initially, she was going to have hers eight days before mine, but for reasons, I ended up having mine five days before hers.

This time, the prep wasn’t a big deal for me. Pro tip: JELL-O and other gelatin products are considered liquid. On that day before the procedure, when you can’t eat anything, JELL-O is a superb approximation.

Another thing: when you mix seven capfuls of Miralax into 28 oz. of Gatorade, you will need a larger container for the mixture.

After my procedure, my wife said I wasn’t myself. I wasn’t smiling. She asked if I could make it up the stairs. Her questions made me grumpier. This passed.

But my right nostril itched, probably from the oxygen tube in there. As a result, I sneezed uncontrollably for three days. That was new.

I got a document from my doctor’s portal, which was incomprehensible. Then a day later, I received something in English. “The biopsies from the ulcer in your colon did not show any sign of cancer or malignancy, which is good news.” I need to make a follow-up appointment, but happy, happy, joy, joy.

I’ll do another report reasonably soon.

“You’re just like me,” he said

vitiligo

On the bus recently, I saw a young woman with a “People Are People” handbag. On the surface, a reasonable sentiment. Part of me, though, is instinctually wary. Does this mean that we’re all alike?

And that is, of course, not accurate. We come with varied experiences in geography, different types of abilities, demographic characteristics, et al. I think we’re necessarily a bit schizophrenic about these things.

On the one hand, we hawk our individuality. On the other, at least some of us embrace our oneness. And, I suspect, both are true.

I was at the grocery store a couple months ago. The young man ringing out my purchase, even before scanning one item or saying hello, proclaimed, “You’re just like me!” And I looked at him, a young black man in his early twenties, and I knew exactly what he meant.

He had vitiligo, an autoimmune disease, on his face and hands. I have vitiligo. I told him I didn’t always have it. He said, “Me too. I didn’t have it when I was younger.” I meant I didn’t have it until I was 50. This common experience meant we’re alike, at least in that particular way. We had that connective tissue.

It’s like when I’m riding my bicycle in town. When I see other riders, they give me that head nod acknowledgment. Naturally, I return the signal.

This pic, BTW, is, unusually for me, a selfie, from about three years ago. This is about the time of the year I start wearing sunscreen religiously, if not earlier. I don’t wait for the summer. Also, I almost always wear hats. After the church play, there were a few unused white hats left over, and I took them all, mostly because I’m always misplacing headwear.

A man asked me about my vitiligo

an acquired depigmentation disorder

vitiligo-1I got vitiligo about 15 years ago, as I first talked about here, then here and here, and most recently, here.

It is “an acquired depigmentation disorder, manifests as white macules on the skin and can cause significant psychological stress and stigmatization… [and] affects about 1% of people worldwide.”

What prompted my revisiting the topic was that a gentleman asked me about it a couple of months ago while we were waiting in a bus stop. He said, “Excuse me, but do you have that skin thing?” “Vitiligo.” “Yeah, that’s it.” This happens two or three times a year, in conversations with people I did not know. It doesn’t bother me.

He was a black man, roughly my age, discussing his son who is in his thirties. He said that it really messed up his son’s head. And, as one sometimes does with a total stranger, I acknowledged that it did a number on me for a while.

Specifically, I’m still not all that great at looking at photographs of me from five or ten years ago. I was so cautious about staying out of the sun, that whatever melanin I had in my face seemed to have gone away altogether.

I look specifically at group shots that included me, and I cannot identify myself except that, well, that’s where I usually stand. In a black-and-white photo in my church newsletter from probably a half dozen years ago, there’s a guy wearing African garb, talking with his hands in the Rose Room of my church. I recognize the clothes but not the fellow wearing them.

Pretty much as a direct result of that specific photo, I became somewhat bolder in getting sunlight. I still avoid long exposure and use sunscreen. OK, I’m not as good with that on days that are cold and overcast as I should be.

So I related heavily to this man’s son’s trauma. In my experience, while white folks also have vitiligo, black folks seem more weirded out. In retrospect, it messed with my psyche far more than I admitted, even to myself, at the time. It was OK for me to look older and grayer and heavier, but this was different. I probably should have seen a shrink.

I have this thrill seeing models in Glamour magazine with vitiligo. In some TV ads, the first image was a young woman with the condition and, implicitly, she was seen as beautiful. In ways you root for people that are on “our team”, this made me happier than I could have imagined.

For ABC Wednesday

April 2017 health report: Vitamin D3

Rickets is not a term I’ve heard literally in decades.

Beyond the things my primary care physician said when I got to see her on April – the usual “lose weight” and “raise your ‘good’ cholesterol – was my need to get more Vitamin D3. I’m supposed to take 2000 IU (international units). My vitamin D level was 20 this year, up from 16 (on what scale I have no idea). But it’s supposed to be at 30.

Here’s my problem. Even as a kid, I never much liked going out into the sun. I mean, I’m playing baseball, fine, but just sunbathing? No way.

And it’s worse since developing the vitiligo at age 51, which makes me prone to burn in certain areas, including the top of my head, my neck and the back of my hands. I’m rightly concerned about developing skin cancer. This is why I often wear long-sleeved shirts and long pants, even in summer.

I just discovered something with the supplements I’ve been taking, off and on, for the last year. It offers 1200 mg of calcium and 1600 IU of vitamin D3 “in just two tablets.” TWO tablets! So I’ve been underdosing, and I need to take three tablets a day.

I must really be deficient, since only 400 IU is 100% of the daily value needed by the average person. Still, my doctor said I wasn’t likely to develop rickets. Rickets is not a term I’ve heard literally in decades. It is “a disease of children caused by vitamin D deficiency, characterized by imperfect calcification, softening, and distortion of the bones typically resulting in bow legs.”

But she did worry that I could be that old man who falls and breaks a bone. And most of us know that falls can be deadly to the elderly for that reason.

Speaking of falling, Dustbury linked to an article about how science shows why shoelaces come untied. This happens to me constantly; they’re ALWAYS untied. I am OK with it, but have tired of people telling me that they’re loose. I know, I know! And now I sort of know why.

Helmet head

I’ve discovered that, people with bike helmets are more visible.

Bicycle_HelmetThis is less a question than a statement by a guy who’s a Facebook friend, who I see seldom in real life, though he lives in the area:

I see you walking around with your bike helmet, even when you’re not riding.

To be clear, I DO have my bike with me. I responded, “You never know when some space debris might fall.”

The TRUTH of the matter, though, is that, sometimes, I forget, occasionally, that the helmet’s on. More likely, though, is that I’m afraid I WILL forget the helmet.

This has happened THIS calendar year: I wait for a bus with my bike (because I’m going on that 1.5 mile stretch over I-90 since bikes aren’t allowed.) I get on the bus. Getting ready to get off the bus, I realize I don’t have the helmet. In this case, I called The Wife, as she was home from school, and she managed to retrieve it.

This ALSO happened several months ago: I get off the bus take my bike off the front of the bus, the bus drives off, and only then do I realize the helmet is not on my head. It was winter or early spring, so I had a knit hat on, which I wear UNDER my helmet. Feeling SOMETHING on my head fools me into believing that I had my helmet. Fortunately, this bus, at my work site, doubled back, and I got the helmet before it left the area.

A secondary reason for wearing the helmet is to protect me from the sun. The vitiligo is particularly bad on the top of my head, and the helmet offers a measure of protection when I’m sitting at a translucent bus stop.

There are a lot of adults who don’t wear bicycle helmets when driving in the city, since it is not mandated. I think they are CRAZY. I’ve discovered that, in general, people with bike helmets are more visible. Helmet use has been estimated to reduce head injury risk by 85 percent.

I’d rather look silly wearing a bike helmet than end up brain dead.

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