[tammy]

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 to reach in the shower chair for the caregivers.

[tammy]

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 hoodies which I can still move in. And I still do some coats like the ones that are real soft like teddy bear hair kind of feel whatever they call that. Also real thin windbreakers help underneath Panchos because they’re thin enough to move but still manage to keep you warm even though they are so thin

[tammy]

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 definitely helps to vent to people who understand what it’s like

[tammy]

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 long text Friday night I apologizing for my harsh comments and for basically snapping at him. He said he understood and that no matter how many bad days I go through he’s not going to turn his back on me because of it. And he actually does understand me needing to lean on him more right now. He called me again this afternoon and we had another long talk about everything and he’s being very sweet and understanding about it all. His job has been stressing him out and running him down which I completely understand. But my whole point was a simple two-word text message here and there would be nice. And he agreed that he needs to work on better communication even when he’s exhausted and stressed. So right now we are in a good place which makes me feel a whole lot better about everything. So hopefully things will continue on a positive note. We have been friends since I was 16 and he was 21, so we do have a long history and connection

[tammy]

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

[tammy]

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 a Thanksgiving other than being stuck in bed and having to have someone feed me dinner. The subject of this topic is definitely resonating with me right now. And on top of all of this I’m not in the best place with the guy that I’ve been seeing, which I briefly mentioned a while back in another topic. Since then we have started things up with each other but he goes through these moments where everything is great between us and then all of a sudden he goes silent for days. He claims it’s his depression but sometimes I don’t know what to believe. Right now he’s avoiding me because I kind of snapped at him earlier when he called after not hearing from him for an entire week. Not a text or anything asking how my knee is doing. So when I finally did hear from him I was definitely giving an attitude which I was trying to control but unfortunately I didn’t do a very good job at controlling my temper. And when I get like that he just does not know how to deal with me. So he just comes up with a reason to quickly get off the phone with me rather than dealing with my frustrations. It just really angers me when I feel there is a lack of care and concern knowing that I’ve been laying in bed with a severe injury. Literally just nothing is going right at the moment

[tammy]

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

[tammy]

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 nothing they can do other than help me stabilize it with a Velcro on brace. And they also gave me an anti-inflammatory meloxicam. I came home and excruciating pain from getting hurt to get on the stretcher. And then of course the doctor was pushing with his fingers around the injury which hurt. And then getting fitted for the brace. All of that manipulation aggravated it to be really. And I was in excruciating pain the whole rest of the night. Worse than I was before I went to the appointment. It has calmed down a little bit since but I’m still not feeling how I was before the appointment. Which obviously I was not 100% but it was feeling better than it is right now. I have the brace that I’m supposed to wear for a few weeks but at the moment I can’t tolerate it because it squeezes right on where the injury is. It didn’t bother me at the doctor’s office when I had it on but by the time I got home it got really bad and I had to take it off. Hoping to give it a few days just to rest after the whole Fiasco. And then I’m hoping that I can start to wear it again. Ugh it’s just I feel like I can’t win like I’m never going to be the same again

[tammy]

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

[tammy]

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 to work with here who has experience with people with sma. Part of the reason why it’s taking me so long to get in to be seen because as you know we can’t just go to any local Yokel doctor

[tammy]

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 scheduled, took medical transport on a stretcher with extreme pain moving from the bed to the stretcher. Got all the way there and found out they could not do it because of the scoliosis rods in my back from my surgery as a child. Because they are metal. I have a tendency to internalize all of my struggles as well but I have been crying almost every day over this wondering if I’m ever going to be the same again. I started seeing someone from my past and things have been going really well between us. But now I feel like this is just going to cause a hindrance in that department. Especially since I’m laid up in bed and can’t move. Have been stuck here for 38 days. Waiting for my Orthopedic appointment on Thursday and hoping to find some resolution so that I can get back to being able to function in my life. This is probably been one of the worst moments of my life I’ve never had an injury this severe before

[tammy]

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 dispensary without a medical card and buy whatever you want lol. If anyone wants any recommendations on really good high quality CBD oils and capsules, I highly recommend Charlotte’s Web. And as most websites do, they offer free shipping if you spend a certain amount. They also have a lot of good sales if you sign up for their emails

[tammy]

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

[tammy]

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 for the first time indoors without a mask on to see my good friends band play at a bar, and even though I was a little hesitant about it it kind of felt nice to be back to normal. I still wear a mask to work but I made an exception for that night. One of my other friends who I hadn’t seen in a long time met me there, and another friend of mine who lives an hour away drove down to meet me there as well since we are all friends. I almost was going to talk myself out of going just out of pure laziness LOL as I think we’ve all become accustomed to being home more since the pandemic. But I’m glad I made myself go because it was actually a really good time and my friend was pretty happy that I came to see his band

[tammy]

Yeah I was hoping for next year also

[tammy]

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 months during that first initial outbreak, but I went back after that and have been doing all of my normal things like concerts and trips to the beach and get togethers and barbecues. I’m still careful don’t get me wrong, when I’m indoors I’m wearing a mask. But I basically returned back to my normal life in the summer of 2020. Especially being at my job which is jam-packed with people all day long,, I’m used to being in crowds all the time. If anything I feel that it’s helped me build up a good immune system over the past 20 years that I’ve worked there

[tammy]

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 if you’re ever looking to visit I highly recommend it

[tammy]

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 fantastic and I like her a lot as a person

[tammy]

I definitely hide my struggles. Not going to lie. More so around certain people then some others. Obviously my closest friends know my limitations and do things to help me that I may not feel comfortable asking others to do. Especially things like eating and drinking. My close friends will help me with all of that but others I just avoid eating and drinking all together because it makes me feel self-conscious. Honestly I think it’s just my own insecurities and not necessarily anything that anyone else is doing to make me feel that way. I tried too hard to make myself look like everybody else. It’s kind of just how I’ve always been. I’ve definitely lightened up a little bit as an adult but of course still have a lot of things I try to hide. I also just recently reconnected with an old friend from when I was 16 years old, who was somebody that I deeply and truly cared about. He had a crazy and dysfunctional marriage for the last 20 something years and I had not spoken to him during the entire time he was married. He reached out to me on Facebook saying how much he misses me and all this stuff and he wants to see me, yet I keep trying to find ways to avoid it just because of said insecurities. Even though he knows me and knows what I look like and who I am. But I’m still having a hard time letting my guard down. Ugh

[tammy]

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 and telling them their inspirational for eating a salad

[tammy]

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

[tammy]

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 just saying in general. Maybe those other people were lucky enough to have family support, which I don’t

[tammy]

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 are you a completely different person that I don’t really know anymore?

[tammy]

No problem! Let us know how it goes