survivinglife
Forum Replies Created
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Lol, DeAnn, that was me with my brothers whenever our dad left me in charge when he left for a while, even though I was the middle child. Unfortunately, now my brothers know they’re stronger than me. 🙁 Lol.
Kelly, I love Quentin Tarantino!
Alyssa, the more we are around kids while they’re young, the more comfortable they are around us while they’re older. They’re adorable so I’m sure that won’t be a problem. Lol. -
A Bluetooth thermostat?! That’s so cool! I’m jealous. Lol. Although I got a few fuzzy and warm blankets and a robe so I can’t really complain.
Kevin, I haven’t read The Screenwriter’s Bible yet, but I want to. I have read The Idea by Erik Bork and that was really helpful. I’ve also recently read The 21st Century Screenplay: A Comprehensive Guide to Writing Tomorrow’s Films by Linda Aronson and that’s a wonderful book. Very in depth too.
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She is a very talented writer! It’s a great book for anyone but especially for other people with SMA.
What kind of books did you get? -
Lol. I’ve actually already finished the book. I don’t always read, but when I do, I finish books in one sitting. Lol. But it was really good!! Very relatable. I especially love the poems Love Potions, Millennial Warfare, Broken Mechanics, and Shipwrecks and Salt Water. That last one is very inspiring. I also tried playing my new Spider-Man game. It’s hard! But fun!
Drones sound cool! I’ve seen videos on YouTube where they put a camera on the drone and caught footage of what the drone saw from above. It’s so cool! I hope you can figure it out and have fun!
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Merry Christmas! I’m in the middle
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I have trouble showing gratitude and feeling it most times, but that doesn’t mean I’m not grateful. I get overwhelming bursts of gratitude at 2:30 AM when I’m laying in bed thinking while everyone else is asleep. I’m grateful for silly things like Marvel, Sebastian Stan, Bring Me The Horizon (my favorite band), flavored ChapStick, etc. but I’m also extremely grateful for my moms, my bro, my in-home nurse, this community, and the fact that I’m still alive despite SMA and all the other diseases I have.
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I’ve never actually tried them either (though I want to!) but I did get a set for my mom to help with her stress and she said she loves them. I’ve heard great things about peppermint as well, although I don’t know about others for pain relief. Have you Googled it? I don’t think it would hurt to try them, as I’ve never heard anything bad about them.
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Awe that’s horrible DeAnn! Do you know why he died?
When I was little, I begged my dad for a pet tiger. He said no, of course. But I guess he told his mom (who lives hours and hours away) about it, cuz she sent one of her newborn puppies up to us. She had named him Tiger cuz he kinda looked like a tiger. Tiger became my best friend. He wasn’t a service dog but he was VERY strong and protective and SMART. But when I was around 8, my dad left me and my 2 brothers and he took our dogs with him. Our half sister (his daughter) and her wife took us in and eventually adopted us. That was the best day of my life, but I missed Tiger dearly. Then a couple years ago, April (my mom who used to be my half sister) said she had bad news: Mammaw had breast cancer, and Tiger died. He died suddenly too. No one knew he had heart worms. It still hurts. Micheael is right in that there really isn’t anything we can say to make the pain go away, but I’m reading this book called Revealing Heaven in which the author (who claims to have been taken to Heaven many times and ordered by God to tell us all about Heaven) says that when we die, we will be greeted by everyone we loved – including our pets. That makes me feel better a bit…
May God comfort you in your pain. Hugs! -
Oh jeez… the list of genres I don’t like would be shorter, but even then, sometimes I enjoy books in my least favorite genres too. Like Give Me Liberty – I don’t really like those kinds of books but I LOVED that one. I guess I mostly read fantasy, romance, and Godly books, but I also love educational books.
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Thank you guys!
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Hey sorry it’s been so long since I replied. Haven’t been on due to family issues and my throat on top of that. But I’ve got some good news: we finally fixed my throat! Well it’s not hurting anymore and it’s not as hard to swallow anymore but still kinda hard to swallow. My mom changed my ng tube cuz it had been a while since she changed it. Also, when I said I use a BiPap machine, I should’ve been more specific. I use a Trilogy machine with a BiPap setting on it at night and a suck n puff setting during the day. The machine doesn’t come with a humidifier. We received a humidifier to plug up to it but we never really used it. But the other day I mentioned to my mom that Halsey had talked about a humidifier so she set it up and we think it’s helping too. Thank you Halsey!
We tried using a peg tube before cuz I had one when I was still living with my birth mom and it had worked at that time but when we tried it again, it didn’t work. Now the ng tube is the only option. But I’m okay with that. I remember the peg tube and how much I hated it. At least the ng tube gives me less anxiety. Lol.
I used to do speech therapy with a therapist as well but insurance won’t cover it anymore cuz I stopped getting better with it. Now I do speech therapy 4 times a day (two times on the weekend) on my own but that’s just the vocalizing part and it’s only to clear me out each day so people can understand me better when I talk.
I’m glad we figured it out though. It feels good to be able to swallow without it hurting. Thank you all so much for helping me feel better and giving me advice! -
Thank you guys so much! I talk to my bro about this stuff usually but it really helps talking to people who actually KNOW what I’m talking about. My bro knows about it from a logical and scientific point of view and that helps too, but it’s not the same.
My mom already talked to my pulmonologist and he basically just scared her by saying that I’m basically just losing the muscles in my throat to swallow and there’s nothing we can do about that, but before freaking out, she talked to my new primary care doctor who thinks it’s some kind of inflammation problem so she gave us some medicine for that. It seems to be working a little so far… She also put in an order for a new suction machine and we should be getting that soon, thank God. I have an Amazon Alexa, but it has a hard time understanding me. Like I’ll say, “Alexa, open Pandora” and she’ll say “playing Our Lawyers Made Us Change The Name Of This Song So We Don’t Get Sued by Fall Out Boy on Amazon Music” and I’ve never had her play that before (although that IS something I would listen to lol). So if I have a ton of spit in my mouth from not being able to swallow, how will I be able to get her to understand me? Also, how would she be able to help me anyway? Although, baby monitors don’t sound too bad – if I call them woman monitors. Lol. Thanks for that idea, Ryan. I’m hoping my primary care doctor is right and it’s just inflammation, but it’s good to be prepared for if it does happen and it’s serious. Also, it’s good to be prepared in case someone breaks in or something. Oh and I do have a BiPap machine. It actually makes it harder to swallow sometimes and dries my mouth out which hurts my throat, but without it, it’s hard to breathe.
Thank you guys for listening to me and helping me feel better. It really means a lot.
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Wow thank you all so much! I’ll look into these or maybe just show all of y’all’s suggestions to my mom and let her choose for her budget. But thank you guys so so much!
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I agree with Ryan. It depends on what you use it for. I use my tablet/laptop for everyday purposes like Google, messaging, news, learning languages, games, etc. I really like it cuz sometimes I’m too tired or weak to use it as a laptop so my nurse takes the keyboard off and I use it as a tablet, which is easier. Also, the tablet allows me to do things while laying down. But an actual laptop like a Mac is better for writing screenplays/books, editing YouTube videos, computer programming, etc.
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Your posts are long?! Girl, you’re talking to the queen of long posts! Lol.
If using folded toilet paper works, then I don’t see the point in trying to find new clothes tbh. There’s too many other things I want. Lol. But when Aunt Flow visits (like now) I wear diapers to act as my pads anyway and they are actually pretty comfy. But as soon as Aunt Flow leaves me alone, I’ll try the folded toilet paper.
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My biggest tips are 1. speak up and 2. get creative. For awhile, I was having terrible pain on my hip area cuz my tailbone is out of place due to my scoliosis. I told my mom and my bro, and they started positioning me where the pain was at least tolerable. Then once my bro left for college, my mom put his foam piece on my bed along with a soft folded blanket. It helps a lot! I still have to communicate a lot about random things that keep me up at night – like using a certain type of pillow under my feet – but me and my mom are great at figuring out new solutions that may seem weird but work nonetheless.
Here lately though, my Trilogy machine has been beeping a lot saying something about a low circuit leak and that’s been keeping me up. We got a new machine but its still doing it. We’re both so confused and frustrated with it.
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Lol. Learning a language in school sounds so much easier than trying to find everything on your own.
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OMG do you know German?! I’ve been working on learning it for a while now. I’m in love with the language and the culture. I mean, I am part German – a very tiny part. Lol. But still, I love all things German.
I’m also in love with Romanian but I’m having a hard time with it. 😔
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Thank you! I can’t believe I thought of it myself. I’m not usually the brightest crayon in the box. Lol.
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Maybe. I’ll check them out. Thank you
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Thank you Angel. I’ll definitely look into it. Maternal pants sound comfy. But they’re probably all for women and I still wear junior clothes cuz I am really small. Lol. But you all are giving me ideas. I’ll try some out and try to let you all know how they worked. Thank you!
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Thank you. Its not cuz of skin on skin contact, though, cuz it only happens when I wear pants/shorts.
Weird thing though: I love jeans for the country feel, but I’m actually into more of the rock-ish/punk style. I love rock in all forms including heavy metal. I have a board on Pinterest with styles I like. I’ll try to link it here: https://pin.it/4ucdcwarjvdcpf
Most of the short dresses I would love with like a leather jacket of shorts. But to be honest, my style is way too expensive for me.
Also, another reason I’m not fond of dresses is that we use my pants to position me in my chair. We can’t do that with dresses.
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Dresses are so not me lol. Although, I may talk to my nurse about it… Idk.
Christmas is right around the corner. Maybe I’ll ask for those adaptive jeans. The country girl in me really misses wearing jeans.
I think in the meantime I might try putting some rolled up tissue where it hurts. My mom’s been doing that for wear the strap from my BiPap mask marks my forehead and its been working for that. Maybe it’ll work for my side…
Thank you!
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I don’t think so… I mean, if I go any higher, they won’t stay up when people pick me up.