Showing posts with label Retinitis Pigmentosa. Show all posts
Showing posts with label Retinitis Pigmentosa. Show all posts

Thursday, February 24, 2022

Bobservations

Carlos sets the alarm for 7AM every day. He rolls out of bed at &:05 and heads into the bathroom for about fifteen minutes., When he comes out Consuelo and Tuxedo enter the bedroom announcing their desire for breakfast and their plaintive yowls awaken me, and I drag myself from bed.

Yesterday morning, though, Carlos stirred and dragged himself from bed. I loved at the clock, 6:55AM. I hear Carlos in the bathroom for a moment and then he comes out and goes back in bed at 6:58AM. I say:

“Isn’t it time to get up?”

“I have a couple of more minutes.”

And he took them!

Even Tuxedo sees how the GOP is suddenly pro-Russia and anti-Democracy, and how the rightwingnut media is playing this as a fight between Russia and Ukraine, and not an attack by Russia on Ukraine.

In court this week North Carolina state attorneys said a provision of the 14th Amendment—disqualifying insurrectionists from holding federal office—is not a defunct Civil War-era relic meant to apply only to former Confederates but a guard against future acts of insurrection and can be used to keep Nazi poster Boy Madison Cawthorn off the ballot for reelection.

Cawthorn says the provision was intended to apply only to former confederates who fought in the Civil War and a subsequent 1872 “amnesty” law waived the 14th Amendment prohibition for confederates. But the state attorneys argued that Congress itself applied the prohibition in 1919 against Victor Berger, who was barred from office for violating the Espionage Act during World War I.

Oops Maddie. You might be banned from office.

So, there was the Olympics right? We watched some, but it seemed every single time we turned it on, the event was curling. Curling!!!!! But I digress … See, I heard the story of men’s 50km mass start cross-country Finnish skier Remi Lindholm who revealed to the world that his penis froze during the race.

The weather was so frigid on race day that the event  was delayed by an hour and shortened from 50kms to 30kms. Some skiers finished with frost on their faces, but not Remi, who came in 28th:

“You can guess which body part was a little bit frozen when I finished.”

Yes, Remi suffered from Frozen Penis Syndrome and needed a heat pack to help thaw out his junk. And that had me thinking: Perhaps I should offer my services at the next Winter Olympics as the Official Dicksicle Warmer™? It’s a thought.

Carlos and I have had to make a lot of adjustments with his declining eyesight, but we still manage to get a laugh out of it, too. Take the other day, for example,  as we were leaving a shop and Carlos had my arm. We got to our car and I said:

“To your right, and then down the side of the car to the door.”

And I proceeded down the left side of the car to the driver’s door and got in. I looked to my right and didn’t see him, and wondered where he’d gone,  and then I saw him. He was walking down the side of the car parked next to us and tried to get into that car! I rolled the window down:

“Choch! [That’s a nickname for him] that’s not our car!”

He came back around and got into our car, and said:

“I just thought it might be a nicer ride.”

And that’s when we learned that when we arrive back at the car, I will tell him we are behind it, and he can walk down the side to the passenger door.

It’s a process, but we do get a laugh out of it every now and again.

Speaking from firsthand experience, when one door closes and another door opens, you're probably in prison.

In Georgia, jurors  deliberated for two days before finding Travis McMichael, Gregory McMichael, and William Bryan  guilty of committing federal hate crimes and other offenses in the 2020 murder of Ahmaud Arbery.

Wait, it took them two days? These white men chased down a Black man and murdered him because he was jogging in their neighborhood.,

These convictions could add more life sentences to the conviction of the three murderers.

Good.

I saw this on the interwebz the other day and I was torn between the man and the look. I was thinking that if he removed the clothing I could make up my mind.

There is a ‘What’s Happening in Camden’ page on Facebook that I peruse every so often. It’s mostly about lost pets, found pets, and what’s that new building gonna be. Sadly, the page doesn’t have a spell check, or a grammar check or a Southern education check. This was a recent post:

My dog went missing we seen her at neighbors house but neighbors want give her back police was call said since she had no chip or DNA it will be hard getting her back, what should I do now?”

Um, go back to school? This explains why, when I jokingly tell people I was born and raised in South Carolina, and they say I don’t sound like it, that I reply:

“That’s because I graduated from the fifth grade.”

I may get killed one day. 

Edison Fan, an Asian model who created both OMG Sportswear and U-Touch Underwear. He lives as an openly gay model in China, of all places, with his son. But the real question is: Would You Hit It?

Thursday, October 05, 2017

Random Musings

Carlos eyes are not getting better, though we knew that was the case. We saw a doctor in Charleston last month and he told her he was thinking of starting to use a white cane because ... and this is just one more reason I love him ... then people would see him coming, get out of his way, and he’d feel less nervous being in strange places. Even the doctor said that was a wise way to look at it.

So, about a week later, his cane arrived in the mail; he only uses it when he’s in places he’s unfamiliar with, and just so that people see him coming and adjust accordingly and he can focus on looking ahead instead of looking down; the cane does the “looking down” for him.

Now, that said, at a staff meeting at his job this past week, his boss asked him to tell the office about his eye condition—Retinitis Pigmentosa—and to explain that he might be using the cane on occasion and this is what he said:
“I have RP, which a person gets when they have sex under a Black Moon.”
Luckily most people laughed but a few—and remember we’re in South Carolina—laughed nervously.

But it broke the ice and several people then talked with him about the cane and if he ever needed anything ... all in all, except for the Black Moon Sex, it was a good thing.
Remember last spring when House Majority Whip, and Republican, Steve Scalise was shot while playing baseball by some lunatic with a gun?

Well, Scalise returned to Congress just a few days before the mass shooting in Las Vegas and he says this latest shooting—which left 59 dead and over 500 injured—has only reconfirmed his opposition to gun control.

Yes, he was shot by a deranged man with a gun and then watched the events in Las Vegas and still doesn’t think we need any form of gun control.

Asshat.
UPDATE ... Last month I posted the story of Family Values Conservative Republican Tim Murphy’s adulterous affair proving he’s a lying hypocritical pig, and now, well, it’s worse.

It appears now that pro-life asshat Tim Murphy urged the woman with whom he was having that affair to abort her pregnancy during what turned out to be an “unfounded pregnancy scare” in January.

And on the very same day this story broke lying hypocritical pig Tim Murphy voted for legislation that would ban abortion after 20 weeks.

He’s pro-life when it comes to you but pro-abortion when it comes to his mistress being knocked up. And now, Murphy—from Pennsylvania—has announced he will not seek re-election when his current term is up:
"After discussions with my family and staff, I have come to the decision that I will not seek reelection to Congress at the end of my current term. In the coming weeks I will take personal time to seek help as my family and I continue to work through our personal difficulties and seek healing. I ask you to respect our privacy during this time."
Personal difficulties? While married you began an affair with a married woman and then asked her to have an abortion and you want to play this off like you have some difficult issues?

The only difficulty you have is being a lying cheating adulterous hypocritical pig.
I need some Hot Men to calm me down ... or heat me up ... so without further ado, the Men of Liar ... the story of a well-respected doctor who goes on a date with a teacher and then she reports that he raped her.

Ioan Griffudd plays the ALLEGED rapist, Dr. Andrew Earlham, while Richie Campbell is Liam Sutcliffe, the ALLEGED victim’s brother-in-law, with Warren Brown as Tom Bailey, the ALLEGED victim’s boyfriend.

One show, triple the Eye Candy.
UPDATE ... this past week I posted about _____’s DOJ getting involved in a case about a gay man being fired for being gay and coming down on the side of the employer ... meaning the _____ Administration is fine with gay folks being fired for being gay.

Well, it looks like the DOJ got smacked down somewhat by the court after EEOC attorney Jeremy D. Horowitz explained why “sexual orientation cannot be separated from sex”:

1. The “but-for” theory ... argues that anti-gay discrimination qualifies as sex discrimination because, but for the gay person’s sex, he would not suffer discrimination.

2. The sex stereotyping theory ... SCOTUS ruled that sex stereotyping—punishing a worker for her failure to conform to gender norms—is a kind of sex discrimination. At first, courts only applied sex stereotyping to masculine women and feminine men, but the Seventh Circuit Court explained that gay people are “the ultimate case of failure to conform” to sex stereotypes, since men and women are typically expected to date only individuals of the opposite sex.

3. The associational sex discrimination theory ... holds that anti-gay bias constitutes sex discrimination much like anti-miscegenation laws constituted race discrimination.

That set up Assistant Attorney General Hashim Mooppan—arguing to legalize discrimination—to make his case ... which did not go well.

Chief Judge Katzmann wanted to know why the DOJ didn’t defer to the EEOC on Title VII, as it almost always does and Mooppan said it was because the DOJ was the nation’s “largest employer” and had an interest in retaining its capacity to fire gay people for being gay. Then as Judge Katzmann began asking more questions about interactions between the EEOC and the DOJ Mooppan declined to answer, basically Pleading the Fifth, which did not sit well with the court.

It was a terrible start for Mooppan, and it only went downhill from there because, as he explained: sex discrimination must always involve a belief that one sex is inferior to the other. Anti-gay discrimination does not rest on such a belief, and so it is not sex discrimination.

That theory is ridiculous for a few reasons, though, as the court pointed out, the most obvious one is that decades of case law disprove it. The Supreme Court has never held that an employer must express animus toward one sex in order to violate Title VII but need only take sex into account in any adverse employment action to run afoul of the law.

Judge Jacobs asked Mooppan whether he can refute the EEOC’s associational discrimination theory and its parallel to interracial and interfaith marriage, and Mooppan responded:
“When you discriminate against interracial marriage, you are promoting racial superiority. When you discriminate against interfaith marriage, you are promoting religious superiority. That makes the comparison to homosexuality moot.”
Except, to the judges it seemed to make the EEOC’s stance true that the DOJ was peddling a “radical reinterpretation of Title VII.”

The arguments concluded, but because of Mooppan’s refusal to answer certain questions, and the fact that his own arguments seemed to support the other side, it looks like the court might rule in favor of the EEOC and disallow the idea that it’s perfectly acceptable to fire someone for being gay.

Fingers crossed; we may have dodged a bullet.
This week, two weeks after the hurricane, _____ finally went to Puerto Rico and wasted no time in congratulating himself and putting down the people of Puerto Rico and saying the island should be “very proud” of its low official death count:
“Every death is a horror, but if you look at a real catastrophe like Katrina, and you look at the tremendous hundreds and hundreds and hundreds of people that died and you look at what happened here with a story that was just totally overpowering.”
And then he downplayed how dire things are in Puerto Rico, where more than half of the people don’t have power, running water, or cellphone service two weeks after Hurricane Maria

“What is your death count?” Trump asked Puerto Rican governor, Ricardo Rossello. “Sixteen, certified” he replied. “Sixteen people certified. Sixteen people versus in the thousands,” he said, comparing it to Katrina.

And, since most of those are brown-skinned people who speak Spanish and therefore didn’t vote for _____ what’s the big deal?

Oh,. And let’s not forget that he told an island filled with people asking for help with the basic necessities of life that Puerto Rico has “thrown our budget a little out of whack.”

Says the man who costs this country millions of dollars so he can haul his fat white lazy ass to the gold course every weekend.
In Good News ... this week the US Census Bureau reversed a previous decision to exclude a question on sexual orientation from the Census after many in the LGBT community demanded to be included; Rea Carey, Executive Director of the National LGBTQ Task Force, issued the following statement:
“Make no mistake—public pressure on the _____ Administration works. It was messages from the members of the National LGBTQ Task Force and our partner organizations that compelled the Census Bureau to reverse their appalling decision to stop counting us.”
Resist, and you will see change.
Last week the United Nations Human Rights Council in Geneva voted to condemn “horrific laws” that condemn people to death because of their sexual orientation; 27 nations voted in favor of condemning the resolution; 7 nations abstained; 13 nations voted against condemning.

The thirteen who voted against the resolution?

Bangladesh, Botswana, Burundi, China, Egypt, Ethiopia, India, Iraq, Japan, Qatar, Saudi Arabia, United Arab Emirates ...

... and the United States of America.

Yes, we did. We voted not to condemn countries that give gay people death for being gay.
Carlos has been fighting a cold this week so I am the cook. I cooked dinner last Friday, Saturday, Sunday—I made Chicken Soup for his cold—and Monday. On Tuesday he said he’d cook and then he ... wait for it ... microwaved the pasta sauce that I made the day before and reheated some leftover pasta, too, and called it dinner.

When we sat down to hit, he said, sarcastically, to me:
“Uh, thanks for dinner?”
To which I sarcastically replied:
“Uh, when you microwave pasta sauce and reheat yesterday’s noodles, that is not cooking. Thank you’s are not necessary; but if they were, you could thank me for making the sauce and noodles that you could simply warm up.”
I’m lucky not to have ended up with a face full of marinara!
Man how shocking was it to hear that Tom Petty died this week at 66? I mean, I saw him, and the Heartbreakers, in concert several times and it was always a great show.

Petty suffered a heart attack last Sunday night and then passed away later at UCLA Santa Monica Hospital. He had just ended a tour celebrating the band’s fortieth anniversary with three sold-out shows at the Hollywood Bowl.

I guess he wanted to go out on a high note.

RIP Tom; thanks for all the music, and enjoy The Great Wide Open.



Thursday, May 04, 2017

A Not-So-Random Musing

I talk about a lot of things on this here blog; I go political and snarky, and some say mean, and gossipy and cartoon-y; pop culture, hot men, TV ... I talk. A lot.

And I talk about personal stuff, too, but not really that much because I do tend to think I like to keep some private stuff private. I have talked about my family, sometimes plainly, as with my sister’s cancer, and my mother’s cancer; and sometimes obliquely with veiled references to what life was like for me.

I joke about Carlos and the fun we have; I talked about meeting, moving, living, loving and, yes, finally, marrying him; I don’t talk about the tough times, been though they exist, because I don’t like to dwell on them.

Until today; because, I think, if you let someone in on what might be considered a secret, maybe you can help them, or they can help you, or you can inch just a little closer by sharing. So, here goes ...

Carlos has Retinitis Pigmentosa, or RP, which is a group of inherited diseases that cause retinal degeneration. What it means is that he is losing his field of vision ... that little photo over there explains it better, though his vision is still better than that worst example. A woman we met recently explained it like this: to a sighted person, take a straw, hold it up to your eye and look through it; that’s what people with RP see.

He’s known about this for years—he was first diagnosed back in 2006 in Florida—and has studied and researched and contacted doctors all around the world to see what, if anything, can be done.

Sadly, for now, nothing can be done. There are drug trials and experimental surgeries, even acupuncture, but nothing seems to slow the progress or cure RP. So we deal. For Carlos, that means a steady decline in his vision for the last decade and he will, someday, unless there’s a cure, go blind.

There I said; and I cried a little because it’s hard for him, for us.

About two years ago, it became clear that Carlos could no longer drive at night because his night vision was growing worse; no big deal, I’ll drive. I think I’m a better driver anyway so, who cares?

Then, in February, while I was home one morning getting ready for work, Carlos, who had already left the house, called to tell me that he’d hit a curb alongside the road; in addition to his eyesight being affected by dim or dark lighting, it’s equally affected by bright sunlight.

So, he was done driving period. He was able to get the car back home and since that day, I drive him to work, then go to work myself, and pick him up at the end of the day. And, again, I don’t mind because I’m a better driver and because I’d do anything for him.

Including the fights.

Shortly after he stopped driving at all, a friend of mine opened a new restaurant in a nearby town, and one Saturday night we decided to drive over and try it out. Now, being rural South Carolina, the drive was on two-lane twisty country roads, but, again, I was driving so, you know, it was all good.

At the restaurant, I ordered a glass of wine and Carlos asked for scotch; Carlos drinks scotch when he’s nervous or worried or frightened and I asked why he was drinking it that night and he said, “No reason.”

I should have known better; during dinner, our friend came over and thanked us for coming by, and Carlos was quiet and really kind of sullen, which annoyed me. After dinner, we ordered dessert and when the server came by and asked how Carlos liked his dessert, he said, “I’ve had better.”

I shifted to pissed off, because it was rude, considering he’d eaten every single bite of the dessert; it wasn’t bad, he was just in a mood. We paid the bill and went to the bar for an after dinner drink and that’s when he told me he was wound up because of the ride over; although a passenger, he couldn’t see the road, and with the twists and turns, and the road being so dark, the trip over left him really upset.

So I started to talk about how we needed to do things, he needs to tell me these things, and how we, and he, need to adjust, and at one point I said, “This is the last thing I’m gonna say ...”

And he said, “Good.”

And so that set off a fight; a fight saved for the next day because I’m the kind of person that if you piss me off, you’ll have a fight on your hands—verbally, of course; but, if you hurt my feelings—like saying “Good”—I don’t know how to react to that; I don’t get mad, I get hurt. And quiet.

So, we had a silent night. The next morning, though, we hashed it out and I told him that I was just trying to help, to offer a suggestion, to have dialogue about what was happening. And I was right; and I was wrong.

Carlos was upset at the trip; he was upset that I had to help him walk along the dark sidewalk to the restaurant, steering clear of trees or steps or any obstacle that he may not see; his anger at me telling him what he needs to do was because of his own fear of losing control; and losing the ability to drive is a huge loss. I mean, think about having to rely on someone to take you everywhere.

So, as we do, we hashed it out and were good, or at least on our way back to it. In fact, the same day we talked it out, we’d been invited to a meet-and-greet with the South Carolina chapter of the Foundation Fighting Blindness at a restaurant in Columbia.

I was still hurt, and kinda angry because sometimes those feelings don’t dissipate so easily, but we went; and during the meeting, Carlos was asked to kind of share his story, and he told it. But he also told the story of the night before and getting angry at the ride, and angry at having to be helped down the street; and angry at me because I was talking too much.

And he started to cry because, as he said, the last thing he’d ever do was hurt me; or me, him.

So, we muddled through it; I told him he just needs to tell me things and I need to listen; and he needs to listen. I joked—because that’s what I do—when he said that someday he’d need a seeing-eye dog and said, “Why? You have me ... a Seeing Eye Bob.”

I joked that he could get a miners hat so he could see better at night; and we laughed about that. And then came another little spat.

At Casa Bob y Carlos, we have a rule: I take care of what goes into the cats and he takes of what comes out ... as in litter boxes and hair balls.

The other night I nearly stumbled upon a hairball and called for Carlos; he came to clean it up, and got most of it but missed some. As I told him where it was, he became angry and got snappy because he thought I was making fun of his RP, or taking his lack of sight lightly.

So we had another ... discussion; quickly begun and quickly ended.

But, as it happened, that same weekend we had another get together with the Foundation Fighting Blindness and the guest speaker was a man who is nearly completely blind, and a member of the board of the South Carolina Commission for the Blind.

He was very interesting; telling his story—he’d begun losing his sight nearly fifty years ago as a child—and informative: did you know that it’s perfectly legal in  this country to pay blind workers less than minimum wage? The Fair Labor Standards Act passed in 1938, allows employers to obtain special minimum wage certificates from the Department of Labor which give them the right to pay disabled workers according to their abilities, with no bottom limit to the wage.

Seriously. In  America. But that’s another fight for another day.

But, we also learned that losing one’s sight is the third most feared diagnosis a person can receive, after cancer and HIV/AIDS. It goes back to that whole “losing control” issue. And the speaker told us that one handles the loss of sight the same way one might handle a cancer diagnosis, with the Five Stages of Grief, or DABDA—Denial, Anger, Bargaining, Depression and Acceptance.

He talked about the anger phase, where the person losing sight is so angry at the loss of vision that they take it out on those around them. Well, now, doesn’t that make sense; Carlos and I both had light-bulb moments.

It makes perfect sense, and now that we both know, we can understand it and handle it better; and joke about it.

As I told him in the car on the way home, “The next time you yell at me, I’ll remind you that you are stuck in Phase Two.”

Anyway ... that’s the Random, or Not-So-Random, Musing for the day,  There are so many people in the country going through issues with their sight—RP, Macular Degeneration and more—and I think it helps to know that you aren’t alone.

And that people will listen.

Thanks for that.