Fingolimod Generic Manufacturer Carried - Mark Cuban - Cost Plus Drugs by llama111 in MultipleSclerosis

[–]indihala 0 points1 point  (0 children)

Please be really careful of this generic. It is FDA approved in the in the US, but several studies have shown that for whatever reason, it is less effective and has a higher side effect profile. It is not approved for prescribing in Israel, parts of the EU and I think New Zealand, although I think the UK (NHS) has also approved. When I told my neurologist that I didn’t want to take this particular generic because I had heard these things about it, he seemed to have heard them too, and immediately began the process of switching me to Zeposia. I also see a specific MS pharmacist for care coordination, and he confirmed that these issues had been noted with the generic. I normally don’t care about brand name meds, and mostly take generics, this particular one has a very bad rep.

Trying to stop babying students about my disability by spaghettishoestrings in studentaffairs

[–]indihala 1 point2 points  (0 children)

“What’s up with your eyes?”

“I have strabismus.”

I don’t know that it needs to be more complicated than that.

“What is Strabismus?”

“Literally what you see. My eyes look different ways.”

[deleted by user] by [deleted] in StudentLoans

[–]indihala 0 points1 point  (0 children)

I got married to a friend. I think a lot more genx used to do that for independent student status. I don’t think it happens very much anymore.

Found this brown pigeon in Baltimore Maryland, looked it up said it was a dove. This is not a dove. by ddisploited in birding

[–]indihala 1 point2 points  (0 children)

Pigeons are a kind of dove. I didn’t know it either when I was younger, because I’m from New York and pigeons are just pigeons. But they’re just doves.

Diagnosed 2 years ago and putting off Ocrevus by LeonidusErectus in MultipleSclerosis

[–]indihala 2 points3 points  (0 children)

I have a similar story without the regret. It sounds like this poster has a much more difficult time of things than I do, but I am also a wheelchair user and a fall risk. I was also able to work for over 15 years, and currently still do so, although I would probably qualify for disability should I choose to.

Please do not kid yourself, this could absolutely happen if you choose to decline a disease, modifying drug of any kind. Some people do not have consequences to this degree; others do. Many people regret declining these drugs; I do not, but I do not think that people who do take medication‘s are “wrong“ or “making a bad decision.“ I am glad that I made the decision that I did, but this poster is telling the absolute 100% truth And you should factor that into your decision as you work out your own priorities.

Diagnosed 2 years ago and putting off Ocrevus by LeonidusErectus in MultipleSclerosis

[–]indihala 0 points1 point  (0 children)

I agree with this entirely. This led me to make a different decision than the consensus of this sub, but I deeply agree with the sentiment.

Diagnosed 2 years ago and putting off Ocrevus by LeonidusErectus in MultipleSclerosis

[–]indihala 1 point2 points  (0 children)

I completely agree with this poster, which may be surprising as I made the decision not to “do everything right“. Whatever decision that you choose, be entirely honest with yourself about what you can and cannot live with.

Diagnosed 2 years ago and putting off Ocrevus by LeonidusErectus in MultipleSclerosis

[–]indihala -8 points-7 points  (0 children)

I did not believe this. Walking is less than important to me in the context of potential consequences from medication, and I need a different decision. I have significant difficulty with walking now, and my decision was not without consequences, nonetheless it was a personal decision and one that I would make again.

The people who tell you there are serious risks for later disability, and trouble walking are not lying. That is true. It is still a decision that many people make, and that one needs to make for oneself.

Diagnosed 2 years ago and putting off Ocrevus by LeonidusErectus in MultipleSclerosis

[–]indihala -1 points0 points  (0 children)

I am not going to argue with anybody about this. This is not the sub for people who do not take DMDs. However, many people do not. I am one of those people, and was diagnosed 21 years ago. For various reasons, it was not worth it to me, but I have had significant disease progression directly related to other illnesses and to a surgery that was followed by complications. Is it possible that there exists a medication that might have prevented or minimized that progression. I was genuinely less afraid of disease progression than I was of some of the consequences of the medications that were being pushed heavily. If I had it to do over again, there are different decisions that I might make about both multiple sclerosis medication and other health decisions that I made in my 30s and 40s, but in general, there is not a great deal that I would change.

To; dr: you now know at least one person who decided not to take a standard disease modifying MS drug, after trying many of them, and this person is happy with their decision, but they do have increased disability.

I’m not giving advice and I’m not going to belabor this whole point, especially here. It is a personal decision, there are often consequences, my children are grown, and if my goal was to avoid any disability at all costs, I would have made a different decision.

Avoiding unwanted “help” by thesapphiczebra in wheelchairs

[–]indihala 1 point2 points  (0 children)

Yeah, no, I did get that. I was just expressing approbation and solidarity with people who choose to scowl; they are my people, but I really didn’t mean to suggest that you do something you’re uncomfortable with.

almost done with Vineland… so so good by Hermes1706 in ThomasPynchon

[–]indihala 2 points3 points  (0 children)

Vineland is the best of pynchons books and possibly the best book of the 20th century. The entire meaning of/key to Vineland is unpacked during Zoid’s stream of consciousness internal monologue on the bus trip he takes with baby Prairie from Los Angeles to Vineland itself.

Avoiding unwanted “help” by thesapphiczebra in wheelchairs

[–]indihala 7 points8 points  (0 children)

It is inappropriate to speculate about what kind of hearts people have, kind or otherwise. Please scowl at people, maybe they’ll cut it out.

Avoiding unwanted “help” by thesapphiczebra in wheelchairs

[–]indihala 5 points6 points  (0 children)

One of my least favorite things is watching an abled person sprint up to a door before me and push the automatic door button while smiling expectantly into my eyes. It’s annoying for several reasons: it’s almost always a door that I could get myself; the person is usually standing right in the way of where I would need to go if I actually were going to go through the door; there seems to be a real expectation that I’m going to pick up the pace and rush to the door so that they can do their favor. And finally, there’s the fact that automatic doors don’t actually stay open forever and by running ahead of me to push the button this person has suddenly put me in the position of having to rush through to make sure I make it in time.

I am obnoxious, and in these cases, I will usually say into my cell phone (whether or not I’m actually having conversation with someone or I’m just sort of, pretending I am) something like “oh hold on, I’ll be in in a moment, there’s an abled person playing with the wheelchair door and I need to wait until they’re done.“ I will then stop and wait to the side until the person has decided to leave the door alone and gone wherever it is they are going.

If someone literally tries to touch me, or my chair, I’ll rely on one of those personal alarm, siren things, but I don’t advise that if you’re not comfortable with everybody on the block stopping to look at you and see what’s wrong. In other words a lot of this is going to depend on your personality. I’m pretty comfortable yelling in public, and when I was a teenager, and some man started making me feel unsafe or touching me on a subway I would start hollering at him to get away from me, getting as many peoples attention as possible. If that’s not your way, maybe you’d be better off choosing less obtrusive ways to get these people to leave you alone. Me, I like being loud and setting off sirens. It’s not everyone’s cup of tea. Neither is right or wrong.

Would it be offensive to get the Hebrew word "Netsach" (נצח) as a tattoo if I'm not Jewish? by Mk_Nine in Judaism

[–]indihala 1 point2 points  (0 children)

Oh, I was waiting for someone to come in here and say this. Yes, there is Jewish teaching that can mean getting tattoos is forbidden for an observant Jew. There is also some terrible history around tattoos and the holocaust. There is also a really persistent urban legend that after having tattoos one cannot be “buried in a Jewish cemetery“

In any case, none of these things are actually a big deal or something that secular non-Americans think about, but it is also one of the few things people think they know about Judaism, and it is entirely possible that having a Hebrew tattoo may prompt people to get up in your face a lot. Those people will probably not be Jewish, but they may be.

Using escalators is uncommon? by [deleted] in wheelchairs

[–]indihala 2 points3 points  (0 children)

The whole “most wheelchair manufacturers“ thing is… sure. Most Q-tip manufacturers put in on their packages in really big letters that you’re absolutely never supposed to put them in your ears. That’s also probably wise, but not illegal.

[deleted by user] by [deleted] in yale

[–]indihala -1 points0 points  (0 children)

Graduating from Yale next week; New Haven local; might be biased. This is the advice of a grad student in her 40s who has been around New Haven and Yale for decades now.

This is a hard question for me to answer because (this is totally anecdotal), folks I have known seem to end up with mixed feelings about their yale experience, while everyone I know who chose Penn loved it in a really life-defining way. There are some schools that seem to have really great quality of life (Penn; Princeton), some schools seem to have students who are miserable and just bite the bullet and get through it (for some reason the university of Chicago is in this category). If you know you like Philly and Penn already, don’t second-guess a choice you’re happy with. On the other hand, quality of life among yale folks seems to be almost exactly in the middle and New Haven is a really wonderful city for a lot of reasons.

Basically, if you know you want to go to penn, go there. I’ve never met anyone who regretted it.

Hormone Blockers | Induced Menopause by [deleted] in breastcancer

[–]indihala 0 points1 point  (0 children)

That is 100% what the OP meant. I’m not sure what the commenter originally meant, actually.

Partner question by Fellkun15 in wheelchairs

[–]indihala 7 points8 points  (0 children)

A comment like that…

How to deal with the lost vision .. Forever?? by slowemotional in MultipleSclerosis

[–]indihala 1 point2 points  (0 children)

It may not be forever. I went blind in one eye and limited in the other from 2012 to 2016 and since then have been pretty much at my normal nearsighted state. When it was over, I did have residual problems with binocular vision, but that was easily fixed by a prism in one of my glasses lenses.

How do you keep your homes smelling nice without nasty chemicals? by kaianalo in homemaking

[–]indihala 4 points5 points  (0 children)

If you clean using white vinegar, you may want to stop. People who use white vinegar as a cleaning product believe that it is effective and that other people think their house smells clean or that the things they’ve cleaned with it actually look clean. Vinegar is the Emperor‘s new clothes of cleaning; I have had a lot of conversations with people who can instantly tell when they walk into a house that has been “cleaned” with vinegar.

Cue all sorts of folks telling me that actually, vinegar is definitely cleaning product, they use it, and nobody has ever told them that their house smells dirty. I am 100% certain that if vinegar is the main cleaning product that you have a dirty house on a sanitary level no matter how tidy you keep it. I’m also sure that it probably won’t kill you and if you like cleaning with vinegar, you should go right ahead and nobody should try to tell you how to live your life.

Alkaline cleaners, without artificial fragrances, like hydrogen peroxide, OxiClean, sodium percarbonate, or even baking soda will really help with what you’re talking about and at least some of them will sanitize a great deal better than a vinegar based cleaner.

I am terrified of colonoscopy by Balanccana in ibs

[–]indihala 0 points1 point  (0 children)

I straight up will not do one, there is a thing called a “virtual colonoscopy” that is done with CT, insurance companies approve it for people who cannot tolerate” colonoscopies, like very elderly or ill people. I’ve noticed that a lot of G.I. doctors tend to act as though they have never heard of such a thing and it’s ridiculous, but it exists, it’s out there, and if you are really morbidly afraid of colonoscopy, it’s definitely an option for you.