It definitely does frustrate me and wish that I had the same kind of success. I’m certainly happy for everybody who has had noticeable gains. But it does make me envious and wish that someday I will see some as well. It is disappointing when you feel heavy you are taking a placebo because you have noticed absolutely nothing

I’ve been in an official relationship with my boyfriend officially for one year now and unofficially for 2 years. He moved in with me before Christmas and we have definitely had our struggles. It isn’t easy in any relationship. Especially when you are living together. But he also has his own demons and baggage that causes conflict between us,…

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I personally don’t believe that you would be able to use that name. I would just make up a different name or alter it in some way to play on the safe side but that’s just my opinion

Oh yeah, that’s what I meant when I said pill. Was just using that as a generalized term for capsule, tablet, etc. LOL. I can’t believe it’s going to be available in just a few weeks. That’s amazing! I wonder how the process will be for us to obtain this.

Has anybody received the email about the new pill form of Evrysdi? I just saw it in my inbox and apparently it has already been approved by the FDA so I’m not sure when it will become available to us. If it’s not already

Thanks I’m hoping somebody can weigh in as well. I know there have been some people who have done it I just don’t know their financial situation. But as far as my knee, it’s not quite as bad as it was but it’s still affecting my daily living. As of right now the only relief I’m getting is from cortisone shots and even that’s not that much of… Read more

I had no idea either. I am so sad about this. She seems like a pretty healthy person. May we ask what happened? Was she sick?

Hey there everyone, sorry I’ve been MIA for so long. Believe it or not I’m still almost 1 year and a half later dealing with that horrific knee injury. I’m not quite in as bad of shape as I was but it’s still pretty severe. Anywho… I would like to open a discussion about marriage. I have heard many conflicting stories about getting married… Read more

That’s really exciting to hear. I’ve been wondering about updates myself as well. I didn’t know about the other one he mentioned above. But I’m glad to know now. I hope some more information will be available at some point

I made a profile a few times and talked to some nice people who didn’t care about my disability. However, I did not feel any interest or Connection in any of those people. I ended up deleting my account after a few weeks. Then every other time I would make a new account I would end up just doing the same thing again LOL. I felt like I was… Read more

Oh yes, let us know how that goes for you! I’ll definitely try it if it works

Thank you so much girl! It’s definitely a nice feeling when it’s somebody you have known for forever. You know their motives, and you know the kind of person they are. And you’re already so comfortable with that person. It really helps a lot to be able to open up. Which I think can be very difficult for people in our shoes. I can’t imagine… Read more

The knee has been incredibly frustrating more than anything. It’s been affecting me in every aspect of my life. I haven’t even been able to return to work yet. It’s been 9 months dealing with this. And I just got a second cortisone injection because apparently the first one was not given correctly. Covid wasn’t too terrible but it left me… Read more

Sorry I just saw this, I have not been on here in quite some time. It doesn’t taste bad at all! I mix it with a little bit of pineapple juice because I get the plane all natural unflavored aloe juice

Did you happen to get his last name? Or is it on any paperwork? If so you can try looking for him on social media

Thank you! I definitely never expected the love of my life as a teenager to feel the same way about me as adults. Like I mentioned above, the best advice I can give is just to start with friendship. You also don’t want to take the risk of coming on too strong and scaring him away. Just keep it casual and let it flow🙂

I do struggle with this a lot myself. Even though I have had a very active social life my entire life, right now I am still suffering from that really bad knee injury from 9 months ago that I mentioned briefly on here. They still cannot quite figure out what to do to get me out of pain. So I have not been able to go out and do anything at all… Read more

I am so sorry to hear that you have been treated the way that you have. And the neglect that you went through. That is just awful. But glad things are starting to look up for you. As far as the paramedic, I would say instead of going straight to asking him out, try to establish a friendship first. At least that’s how I would do it if it were… Read more

Try getting some aloe juice. Like the real deal pure organic kind. I get mine off Amazon. I’m sure you could put it right in your feeding tube. I don’t have a feeding tube but my skin does also get dry as hell. And I’m also not able to shower as well as non-disabled people can so I think that’s also part of my problem. Certain spots are harder… Read more

Yes I struggled with this as well. I find that it depends on the individual coat. Some are a little more pliable than others. And then some of them are just way too stiff and I can’t move my arms. Or they are just so thick and puffy that I can’t lay my arms in the position that I need to. But Pancho’s definitely help a lot and I also wear… Read more

Thank you! And here’s hoping… in both regards. So far things have been really good between us again. And as far as my knee, I seem to have good days and bad days. Like yesterday it hurt a lot but today felt better. Hopefully the pain will just continue to decrease so I can get my life back! Thanks for all your support, sometimes it… Read more

Thank you alyssa! Sorry I just told me now saw your reply. I’m hoping to just get my life back at one point. It happened on October 5th and it feels like it’s been a year. I’m just worried about the rest of my body losing strength because of this. But hopefully not. As far as the guy, we actually talked things out this weekend. I sent him a… Read more

Thank you! If anybody knows what we go through when we are injured it’s you all. Things sometimes take us longer to heal then people who don’t have our condition. I appreciate the support

The pain is very very slowly starting to diminish a little bit but not as fast as I would like. And not asked enough to be able to function again yet. But hopefully it will keep getting less and less. Getting reinjured going to the doctor’s appointment definitely set me back a whole week if not more. Unfortunately I was not able to have much of… Read more

Thank you! I appreciate all of the well wishes and concerns

Not great. I had a medical transport transfer me to my appointment on a stretcher because the pain is so bad I can’t get in my chair. They hurt my injury while moving me onto the stretcher. So I got to the appointment feeling extra pain than I already was in. They said I have soft tissue damage and possibly also a tear. So there’s really…

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No unfortunately they didn’t give me anything. The ER took X-rays and did a CT scan and said nothing is broken. Gave me some pain pills and muscle relaxers and sent me on my way. My appointment is tomorrow though I will keep you all posted once I know more

Thank you for the well wishes! It is incredibly frustrating and depressing. My primary doctor gave me oxycodone for the pain but it really doesn’t do much other than just slightly take the edge off. My old orthopedic doctor who retired and is now working full-time in China, pulled some strings and got me an appointment with somebody he used…

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I’m having quite a Time myself with this topic. Lately everything has been going wrong all at once. I suffered a severe knee injury and still don’t have an exact diagnosis. Took x-rays and CT scan and they were not able to find anything wrong. The pain is so severe I can’t get out of my bed whatsoever. Then on top of that I had an MRI…

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Yes I agree with you on that one, I would totally find that offensive as well. Like I’m inspirational because I’m out having coffee and I actually have friends? LOL I definitely would take it the same way. Even if their intentions were good it’s still offensive. It would be the equivalent of one of us going up to an extremely overweight person… Read more

I’ve tried it and it does definitely help me sleep. But I stopped buying it just because it’s so crazy expensive. And I had a medical marijuana card a while ago but ended up never using it because I didn’t like the shop nearby. Poor selection. But now my state has made all marijuana legal, medical and recreational so you can go into any… Read more

They are a cover band. All rock music. A mix of 80’s and 90’s mostly

I guess I would have to say I’ve always been a very social person even as a kid. All the way up until pre-pandemic. My job also requires socializing LOL. But I also think it’s just my personality. Last year I started going out and doing a lot more after hibernating for the first year except for going to work of course. I went out last weekend…

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Yeah I was hoping for next year also

Well the most important thing is that you went and you had a great time. And also I’m really looking forward to this release of apitegromab in what sounds like will be 2025. I am hoping that this will be something positive for all of us

That’s awesome glad you were able to go and have a great time! It’s good for the soul! I definitely wouldn’t say I have anxiety about going out with covid around because I just think it’s not going anywhere unfortunately. I was very careful for the first maybe 5 or 6 months when it first hit the US. And I stayed out of work for 3 or 4…

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I can’t speak on London but I have Been to Spain twice and France once. Spain was fantastic and everybody at the airport handled the wheelchair a million times better than they do in the US. They are much more caring and technologically equipped. Lots of things were also wheelchair accessible like the beaches and public transportation. So…

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So frustrating. I still have not gotten any solid answers yet. The director at Social Services in New York said he can pretty much almost guarantee that there would be some type of gap in coverage during the transfer. It just seems crazy to me, I can’t be the only disabled person with Medicaid that has moved lol. Not that I have yet, but… Read more

Oh and to clarify, because it’s site does not let me edit my posts anymore. I have already discussed this with my current Medicaid case manager and she said she has no idea how that works since they don’t deal with other states and she has never had any clients go through this process. So unfortunately she was no help, even though she is… Read more

I was wondering if any of you have moved out of state while being on Medicaid. I currently live in New Jersey and while we have pretty decent insurance and services available for disabled as far as prescriptions and medical costs, we don’t have the absolute best options for private duty nursing or PCA care. I have heard from insurance reps… Read more

You are very right. I would say I’m at a 50/50 stance about it all. Guess we will have to see what happens. And yes he is a very open person with it all but I’m still a bit skeptical LOL. Even though I’ve known him forever. We did go a long period of time without seeing each other or speaking. So I’m kind of like, are you still the old you? Or… Read more

No problem! Let us know how it goes

I guess I’d say more like lunch or brunch LOL because I don’t eat breakfast. But it doesn’t matter what time you take it as long as you take it close to the same time every day. When they say after a meal, I don’t think it matters on the size of the meal. It’s not really that strict of a regimen. As long as you eat before you take it, you’re good

No problem! And yes, every person is definitely different. What I did when starting the medication just as a precaution in case.. I ate a bowl of plain unsweetened oatmeal right before taking it to kind of coat the stomach. And I did that for several months. Maybe it helped? Who knows but can’t hurt to try. Also I have not noticed any… Read more

Just to give you a different experience and positive vibes… I have been on the medication for almost 2 years now and I have had no GI issues and no diarrhea. So I hope that helps to ease your mind a bit 🙂

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Testing again

Testing 123 🤣

I had no idea that it even posted LOL. It told me her again. We’ll see what happens with this one. So what does the spinal tap do? You have to get that before getting spinraza? Sorry for the ignorance LOL

This may sound dumb but was wondering what you get spinal taps for? I’ve never had one so forgive my ignorance LOL