[zicari]

Thanks DeAnn and Kevin for checking on that for me.

The response was to set my email client to basically SPAM the messages. I already knew I could do that, and how – I just figured there would be a profile settings page to opt in and out of different types of notices. That way I’d still be notified if there was a private message or something.

Not a big deal – maybe a future site feature?

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Heather – you’re spot on, which is why I don’t let myself get offended by the the things people say… especially when they’re just trying to be nice. I also think microagression theory is bunk. There’s no reason to invent new ways to be a victim of society.

Having said that, it can be amusing to have fun with people in order to set them straight when they are jumping to conclusions.

My favorite is when a waiter/waitress asks the person I’m with what I want to order, instead of asking me, when I’m sitting right there.

“And what would he like?”

me… “He would like the tuna salad, thank you.”

[zicari]

I have had 1 shot of Moderna so far. My next is in three weeks.

The injection itself is easy and painless.

About 24 hours after the shot, I had a rough night. I had a headache, what felt like a mild fever (I didn’t take my temperature though), and some chills. Also my arm was sore at the injection point. I had no breathing issues. I had trouble falling asleep but eventually did. When I woke up it was like nothing had happened.

The symptoms lasted about 12 hours after they started (except the arm soreness which lasted a couple of days but was no big deal). It sucked overall but I’ve been through way worse. Not looking forward to the second one, though.

I’m not sure what you could do to prepare. The symptoms, if you have them, are uncomfortable but my understanding is that they pose no danger. And some people have no symptoms at all.

[zicari]

There are good points to be made on both sides, but I agree it’s frustrating.

One of the issues is that it – believe it or not – it was often easier back in the day to convince a private business owner to make an reasonable accommodation. I remember once when I was a kid, my mother told a restaurant with a step that we were eating at another place across the street. Not a week later, the restaurant owner had personally poured a ramp – it took a $50 bag of concrete and a couple hours. I used to go to a dentist that laid out a wooden plank for me to get in the door every time I came. It was a $10 solution and I was their only disabled customer in a small town. Now, it has to be a certain grade, takes multiple permits and inspections, and in some jurisdictions opens up other cans of worms for businesses such as their bathroom accessibility. For that matter, you and I are thinking in terms of ramps and our own disability – but has that business accommodated everyone? Is everything in braille, do they have adaptations for the deaf, etc.

I think we have to meet each other halfway.

[zicari]

Just took my first dose!

Guess I’m in the club now. No strange feelings or effects so that means my anxiety is holding up just fine – which is all I was really worried about. I’ll have to wait and see on the GI issues which was another worry, but I’m ready for that if it happens.

I’m a little disappointed that it’s been 30 minutes and I still can’t dunk a basketball, though.

What do you all do with the huge box, cooler, and ice packs every month? They just get thrown out?

[zicari]

Alyssa,

I’m using an older iPad (about 3 years), but with the IoS updates I’ve been able to use it with a bluetooth mouse!

The experience isn’t perfect, sometimes I have to reach for the home button, but otherwise the new feature has made it possible for me to use it.

[zicari]

sweet! still waiting for my turn :/

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If I were to survey 100 random people and had them put me in one of those two bins (attractive or unattractive), the vote would not go in my favor. I can’t ignore that.

It’s not a pleasant thought, but it’s not something that I get down on myself about. There’s not much I can do about it. I can dress, groom, and present myself well, and even project an occasional air of confidence, but no matter what my disease has ravaged my body.

Having said that, individuals still have different preferences, and it’s always possible to find something physically or visually attractive about someone. When it comes to women, I’m an eyes guy.

[zicari]

I like that!

I’m tired of wearing just Crocs 🙂

I may give them a try

[zicari]

Alyssa,

Do you hold the shower sprayer yourself or does your caretaker?

For me it’s always a trade-off between the size/weight of the thing and its features. They have some nice ones with a good, adjustable spread but they’re bulky and heavy usually.

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I hope I’m not ruffling any feathers or being too controversial here, but I think one of the biggest problems we have in the world today is a tendency for people to shut out views that run counter to their own or to the prevailing view of a group with which they identify. So I’m just going to offer a different perspective for people to chew on.

For the sake of the argument, let’s substitute “sexism” for “ableism”. Now let’s say some some gender studies professor writes a paper that declares something – it doesn’t matter what it is so we’ll call it X – some action, word, social phenomenon, whatever, as sexist. If a man disagrees with this on its merits and offers a counterargument, he will invariably be accused of protecting his own privilege, and not having an opinion worth considering simply due to the fact that he is a man. This allows the proponents of the “X is sexist” theory to avoid defending their idea to a full half of the population. If a woman disagrees with the thesis, though, it’s a bit trickier. In order to avoid debate, you have to accuse her of suffering from the equivalent of a type of battered wives syndrome or stockholm syndrome, that she has been so traumatized by a lifetime of oppression that she has come to identify with her oppressors. Therefore her opinion is compromised. This leaves nobody left to argue – nothing to debate. X is sexist, because we say so.

So, to me, “internalized ableism” is a convenient way to dismiss the perspective of people with disabilities who might have a nuanced or dispassionate view on a controversial subject having to do with disability – especially one with political overtones.

But this is probably just my internalized ableism speaking…

[zicari]

perhaps the “compliance” issue has to do with safety… like scratching one’s head with a Jaco?

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I’m signed up! Decided to start Evrysdi – should have my first shipment by the weekend.

Quick question,

For those of you who have taken it, what’s the very first dose like? I get anxiety whenever I feel something weird going on in y body, but I can handle it better when I know what to expect.

[zicari]

I just started my process this week. Getting rid of my 9-year-old Permobil for a Quantum Edge.

It generally takes me at least a month to adjust to a new chair… it’s mostly about armrest and headrest positioning.

Good luck !

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Yikes. Diarrhea may be a deal breaker for me.

In trying to decide whether to begin a treatment (for any of the available new drugs), what I really want to know is whether or not adults are actually gaining or regaining any practical function. As an example, up to about 4 years ago I could shave my own face. It got harder and harder until I had to turn that duty over. I can still brush my teeth but that’s beginning to slip. Just getting back little things that keep me more independent of others is my goal (that and becoming salsa dance champion).

Retaining function is important too, but it’s hard to measure whether or when I would have lost a particular ability in the future. If I get an ability back that I lost, however – then I know the drug is working.

[zicari]

That’s awesome.

I want to get it just to ease my anxiety. Every time I feel something even slightly off I think I got da rona. I really think the risks are minimal, but I understand why some are hesitant with how fast it came.

Waiting for my turn.

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I called accredo and asked if I could give that stuff back every month when they drop off my shipment

they said no 😆

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No I haven’t used them. After your post I was trying to find something similar to what I had before – these looked pretty close.

[zicari]

Two to look at:

Hammerhead handheld shower head

or (much more expensive)

Hansgrohe Raindance

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It’s funny you mention that. I had a pretty hard crush on a girl with SMA when I was a much younger man. She never let me get one millimeter beyond the friend zone. She always had able-bodied boyfriends. I never tried to get an explanation because I didn’t want to be a creep. I just chalked it up to another in the long line of rejections I have had my entire life. I never knew if she didn’t want a disabled boyfriend or just didn’t like me. Either way it sucks every time.

[zicari]

Thanks again DeAnn for giving your angle on this.

I pretty much agree with the “what do I have to lose?” mentality on these treatments. They certainly seem safe. I think I’m just overcautious when it comes to new medications.

Doc cleared me to start when I want. I’m going to chew on it a bit longer and I’ll keep you all updated when I take the plunge.

—————

off-topic how did your vaccination go?

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Thanks for your perspective, Alyssa. I agree that it’s worth a try, I could always stop treatment. It’s just so new and I guess I’m naturally cautious.

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Thanks Yvette for the input. Heartburn I can deal with… it’s the reports of Montezuma’s Revenge that concern me. Regular diarrhea will affect my independence. I’m going to continue monitoring other peoples’ experiences for a while.

[zicari]

Your phone analogy is perfect and very helpful!

Although it does remind me of all the girls that hung up on me over the years…