Lupa F

“I did my own research” seems to be believing anything negative about the vaccines without regard to how reputable the sources may be and ignoring all the positives from reputable sources.

I wonder how much research was done before taking an SMA treatment that was tested on only a few hundred people? (My excuse for not worrying about that is…[Read more]

One thing to remember: airports and airlines aren’t the same thing. Airports are usually owned and run by the local governments, airlines are private companies trying to squeeze every bit of profit out of everything and that’s where the problems we have lie.

This isn’t work related, but I always get comments when people come over to my place saying how messy it is because I tend to not put anything away in drawers or closets. I have all my clothes sitting out on my couch and all my papers on my desk. Putting stuff away means a lot more effort on my part if I need to get anything so it’s just not worth…[Read more]

I get nerve pain about 3 or 4 days after every injection, like my legs start hurting a lot and I could barely sleep. I used to let it go away on its own and that would take weeks, but now as soon as I feel it starting I take some tylenol for a day or so and it goes away completely. It’s surprising how well it works to fix that, like I take maybe…[Read more]

How do you do your taxes? I do mine online and they save all my returns for the last 5 years there.

Also, do you mean SSDI or SSI? They have different income requirements, with SSDI allowing higher outside income. This is what I could find for the current numbers: “To qualify for SSDI, you must earn less than $1,170 per month. To qualify for SSI,…[Read more]

I’m sorry, but “SMA Pride” is ridiculous. It makes it sound like you’re celebrating a disease that kills hundreds to thousands of children a year and severely disables many more. Reading recent articles there seems to be some trend to try to normalize SMA as a benefit (“it makes me unique!”) while ignoring all the people it has killed and families…[Read more]

A little note, I think there’s a typo in the quote at the end? ““I see disabled people every day thinking of ideas disabled people never would have”.

Luckily(?), I’m not much of a family person so I don’t mind missing stuff, but I’ve told my family “if I show up I show up” but to never count on me being at an event because I’ve had enough times where something or other broke and there was no easy way for me to get somewhere.

As far as vans go, I just got a new one 2 years ago and the thing…[Read more]

Mike, I got the device you linked. At least for me it was pointless because you still have to get the sock around the plastic which is bigger than my foot and I couldn’t even come close to getting it on that thing. I tried another device too which had the same issue: if I can’t get it over my foot how am I supposed to get it over something bigger…[Read more]

Would you have to redo the loading doses for Spinraza since you’ve been off it a while? That might make the decision for you.

I see a good and bad reason for it.

When I was younger and could still walk a little I never really associated myself with wheelchair users. I didn’t even use a wheelchair, I used a scooter. So services like this that seemed geared directly toward wheelchair users I wouldn’t look into because I didn’t think they applied to me even though I might…[Read more]

DeAnn, didn’t you have covid already too? Reinfections still seem surprisingly rare, so between that and being vaccinated I’d say you don’t have a lot to really worry about. But it’s really up to how comfortable you feel. As the others have said, in this case, get a mask that protects you rather than a standard mask that’s more for protecting others.

Thank you for putting up links to whenever they’ve offered these packages. One of the items from an earlier package helped save me from a bad situation a couple weeks ago: I fell off my chair when transferring from my bed and I had my tv on and my phone wouldn’t recognize my voice over the tv (I live alone), but the Amazon Echo device I got from…[Read more]

I try to name them by the room or the main thing they’re next to. I only have lights set up so I’ve got “computer lamp” “bed lamp” “living room lamp”. I’ve got some others next to my bed I never use and shouldn’t have bought, so they’re named “stupid lamps”.

I’m reading the Mike Nichols biography. You can live vicariously through me while I live vicariously through him. It’s a good book, but almost tiring how many famous people he was always around.

And then it’s even more frustrating when someone finally does come to help and I try to explain what I want done. I’ll tell them “just tighten that screw right there”, and they’ll look at me and then go outside and take a tire off my van. And I’m like wtf that wasn’t even close to what I said to do.

I run into the issue with family where I get told: “Call me if you need anything!” I ask them for help with something. “I’m working, can I come some other day?” I say okay and never hear from them again. The thing I wanted help with breaks and I need it fixed immediately so I ask again. “Why didn’t you ask for help earlier?” Sighhhhhhhhhhh.

I…[Read more]

DeAnn, did you ever get new armrests? I stopped even trying to use my new chair because the ones I have are so uncomfortable.

Unless you take it regularly for something else, it’s not recommended to take Tylenol or aspirin before the shot.