survivinglife
Forum Replies Created
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Thank you, Micheal! It’s definitely a huge comfort to know that I’m not alone with this since I’ve been feeling very alone. I usually talk to my brother about this stuff cuz even though he doesn’t understand it really since he doesn’t have SMA, he always gives good advice and comfort but we’re not really on speaking terms at the moment. But knowing that I’m not alone definitely makes me feel better.
We’re trying to stay away from hospitals at the moment what with the Coronavirus going on and all, but my mom already said she thinks that what you described is the issue. I don’t have a physical therapist but we’re trying to get a home health aide right now. My home health aide usually stretches with me and whatnot but my good one quit abruptly. Now we’re struggling to find a new one. And my family members do so much for me during the day that I don’t even want to ask them to work out with me, especially since my moms have bad backs and my brother works 2 jobs now. But I have tried the jell seat. I did not like it at all! We got it cuz the guy who was customizing my newest wheelchair recommended it and as I’ve had him since I was a little girl and he’s never let me down, I decided to try it. I’m not saying that it won’t work for you but for me it did not work at all. My legs always felt like they were kinda falling asleep except it was hurting extremely bad. And my buttucks and hip were constantly hurting. We eventually started using my pillow folded up under my buttucks and that helped a lot for a while but now it’s not anymore. Now we’re trying a donut shaped pillow. When it works, which depends on how I’m positioned on it I realized yesterday, it’s great. But when it doesn’t, it feels like needles going into my buttucks. Right now I’m positioned pretty good but I am kinda looking forward to lay down time today cuz you know if you stay in one position for too long it hurts regular people. Lol. Anyway, thank you. I hope that the jell seat works for you and if not that you find something that does. Maybe try a donut shaped pillow too? IDK.
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When you say you’re tired, do you mean physically or emotionally or spiritually? If you mean spiritually or emotionally, I totally feel you. I’ve had a very bad bout of being depressed and tired. I don’t know if any of you all ever deal with pain due to SMA cuz I never see any posts on it, but I’ve been hurting a lot lately. When I’m laying down, my skin where my tailbone is hurts like crazy and that’s cuz my tailbone is in the wrong place. It’s a few inches higher than it’s supposed to be and a bit to the side, due to my scoliosis. Also, my bones poke out in the wrong places which hurts when I try to do everyday things like bathing. And when I’m in my chair, my buttucks, side, and um private area hurt. My mom got me a new seat for my chair to see if that would help and it did help with everything except my side for about three days. Now my buttucks hurts again but at least my private area doesn’t hurt anymore. Still, when my buttucks hurts now, it’s so bad that I literally can’t deal with it. I end up asking to lay down early (I lay down at 1 o clock everyday to prop my feet up to try to regain the circulation in my feet) and then I end up spending most of my time in bed. And the only thing I can do in bed is listen to music and play with Alexa. It gets extremely boring very fast. My whole life, I really never cared that I wasn’t like other people even when I was at school. Even when I had to give up going to school cuz of SMA and therefore Stop seeing my friends who apparently weren’t really my friends but oh well. I missed them but I was still fine. For the most part I mean. I was depressed but that was cuz my older brother was abusive and I couldn’t do anything about it cuz he said that if I told anyone, he’d well I don’t know if it’s okay to talk about this on here but let’s just say he threatened to do something bad to my little brother. Anyway, I didn’t really care that I was different. But now I do. More and more lately, I’ve found myself crying and wishing I could just be normal. People always say normal is overrated but I don’t care. It’s better than hurting all the time. Plus, I wish I could get up at night when my moms suddenly get up for a late night snack of cereal and my bro decides he wants to have some cereal too so he gets up and goes in the kitchen too. But it’s not worth it to have them get me up so I can be with them even if I could still eat. Also I really miss cereal. Anyway, yes, I’ve been extremely depressed and just tired. Tired if trying to act okay. Tired of the pain. Tired of being bored. Just tired. I tried to watch a movie that I really want to see today on Netflix but my buttucks was hurting too bad so I asked to lay down an hour and a half early. And then I couldn’t really talk to Alexa cuz I was crying so hard cuz of my depression that she couldn’t play the songs that calm me down. I got on here when I got up after lay down time to talk to you all about it but I’ve been doing that basically everyday for this whole week but I didn’t really want to bring y’all down and I always basically come on here to complain it seems so I kept like idk chickening out. But today I saw your post and it really warmed my heart. Thank you for thinking of other people and asking how we’re doing. It means a lot. ????
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Lol! True!
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Wow! I’m lucky then. I’ve never had my wheelchair melt on me. Most of my stories are just of my wheelchair battery dying at the most inconvenient times, like during The Frog Follies. My dad had to push my chair back to the van on a scorching hot day after eating too many hot dogs. Lol.
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I don’t know any of SMA but I love watching Sitting Pretty Lolo on YouTube. I think I found her Instagram but I don’t know. I don’t have Instagram. Lol. She has als.
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OMG DeAnn! You should definitely get a new chair soon! Getting a new chair has always been a very long and frustrating process for me so I wouldn’t put it off. That said I love my chair that I’ve had since I was 5 years old so much that I still use it almost everyday for exercising and playing games. But for me, you know you need a new chair when you are having trouble sitting up in the one you have. I love my old chair cuz it’s comfortable and I can move around pretty well on my own in it, but I have a hard time sitting up in it. And I’m sure you all know how important posture is when you have scoliosis and bad lungs. Plus, I feel safer in my new chair cuz it straps me in. I know I won’t fall even if we hit a bad bump or I drop my head or I’m feeling dizzy for some reason. I also agree with what Alyssa said about the battery. I had that problem too.
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Most of the time I just read while outside but sometimes I like to paint. Also I used to like to fish. That would be cool if you’re interested in it and you live near a lake. Puzzles can also be done outside, jigsaw puzzles and word puzzles and sudoku puzzles. Oh and you’re never too old to blow bubbles. Lol.
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I’d much rather be involved in the planning of activities even if someone has to call out my disability. I know what works for me and what is worth it for me, you know?
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SMA has given me the ability to laugh in the toughest times, and that has taught my younger brother to do the same. Also I don’t know how creative I’d be if I hadn’t always been forced to be creative to fix problems caused by SMA. And since I don’t really have the ability to be rambunctious, I’ve always been an observer and I understand people more than others, which not only helps me communicate with them but also helps me write better characters.
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Being able to unconsciously move yourself in the middle of the night when you’re uncomfortable instead of the uncomfortable feeling getting so strong that it wakes you up and you have to either suck it up and wait until morning or wake someone in the house, if you can.
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OMG setting the phone to say “I love my wife” was hilarious. Lol.
I’m not really a prankster, mainly because I can never think of anything good. But one year, as I was doing schoolwork (I was homeschooled) I suddenly remembered that it was April Fool’s Day. One of my moms, Brook, was cleaning the bathroom which was right next to my room. On a whim I hollered “OMG Brook I need a tissue! My nose is bleeding really bad!” My nose bleeds badly at random times so of course she jumped and grabbed a tissue for me. The look on her face when she went to hand me the tissue and saw me smiling up at her with no blood was priceless. Lol. -
I don’t know of any useful skills really. I mean, I have multiple news skills (including the SMA News Today one) that I listen to. But besides that, I listen to music, the Bible, and play games. The games are my favorite but my favorite games are hard for me to use since they require a lot of talking. There’s The Magic Door, which is a choose your own story game. It’s really interesting but I get frustrated easily cuz if she can’t understand me, I’m stuck. And she frequently can’t understand me. I also love The Tricky Genie…I don’t know how to explain this one really. Basically, she tells you a short story with a problem and says that a genie appears with three pouches, one of which has the solution to the problem and you have to pick the right one with only 2 tries. It may not sound fun but I love it. It’s easy to play…once you get it open. That’s the problem for me. The easiest way for me to open it is… well: “Alexa, I’m bored.” “Ok let’s find something to do. Would you like poems, jokes, games, (and on and on)?” “Games” “Games got it. Would you like family games, classic games, choose your own story games, (and on and on)?” “Choose your own story games” and then I wait for her to name the Tricky Genie and say yes and then I play. The only problem is, that almost never goes smoothly. At least not on the first try. I also like trivia games like Marvel Movie Trivia, True or False, and Jeaperdy (?). That’s all I can think of right now though.
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Wow that’s incredible Halsey!
Mine is a bit more personal. The one good thing about the Coronavirus for me is that I get to see my bro sooner than we originally thought. My bro, Nick, is my best friend and he’s in college right now. Or at least he was. Now he’s home due to the Coronavirus. Anyway, we both struggle with depression and we go to each other to feel better. And lately our depression has been really bad. To the point where we will call or message each other in the middle of the night and sometimes even cry on the phone. But since he’s home it’s a little better. Even just sitting there doing nothing with each other helps. And the other day we played a few games of chess. It was good exercise for me, but while we played I was struck with how lucky I am to have him. He’s so patient and kind and non judgemental. I kept accidentally knocking over the pieces. Most people I play games with will jump to fix the pieces for me, and I hate that cuz 1. I want to try to do it myself cuz it’s good exercise and makes me feel better about myself and 2. I then feel the need to thank them and then I end up saying thank you so many times that I start cringing every time I have to. But Nick would just patiently watch me fix the pieces myself, unless he saw me really struggling. Then he’d help me. Plus, I’m not good at chess at all. I enjoy it but I suck at it. But he’s really smart and has a great memory so he would stop the game and help me understand the best moves and then put the pieces right back to how they were. And I didn’t feel like an idiot or like he was judging me or was annoyed with me or anything. Compared to my other brothers…well let’s just say I’m not used to his kind of kindness and such. I’m very grateful to have him as my brother and I’m glad he’s home even if the reason sucks.
What kind of business would you start if you could? -
Thank you, Tracy! This has helped me a lot.
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Awe thank you all so much! You all are very inspiring!
I’m not looking to have any kids at the moment for myself, although the possibility definitely gives me hope. I’m currently single and I probably will be for a while. I’m not dating or anything yet cuz I don’t think I’m ready. I’m still trying to heal from some abuse from my childhood, and until I can do that, I don’t think getting romantically involved with anyone is the best idea. I was abused physically and sexually, but the sexual abuse has had the worst effect on me. I want kids someday, but I’m not ready yet.
For my character, however, I need to find out as much as I can about having children with SMA. I’m gonna look into C-section births, but I wonder what would happen if she tried to have a normal birth. Is that possible? Also, was it hard to sit up while pregnant? I know I find it hard to sit up when I’m bloated… not that that is the same thing. I’m just curious. How did you deal with the pain and vomiting, etc.?
I’ve never heard of Wheels Like Mine but I’ll check it out for sure. Thank you! -
Wow thank you so much! I was wondering about whether our kids might have SMA as well. Honestly, I think I would like to have a kid with SMA. Okay not for them. I wouldn’t wish this on anyone else and I know it’s hard on parents, but to be able to tell your kid “I know. I understand completely.” I don’t know, I feel like that would be great.
I’m currently working on a movie idea that shows what it’s like to be a woman with SMA type 2 and I’m thinking about having the climax be her trying to have a baby but I don’t know anything about that. Did you have any complications with the pregnancy or the C-section? Do you have any advice on how to include this in my movie idea? Thank you! -
Okay. I’m gonna have to look into it. Today I was extremely bloated. ????
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Thank you guys! To be honest, I’m trying not to go the route of medications since I already take so much and plus, the last time we tried medicine for the problem, I got this bad rash on my leg. But what is venting? I’ve never heard of it before.
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Most of the time I’m with my family when I’m out in the world so people don’t usually stop and help me. But if for whatever reason I am alone, I don’t like it when people assume I’m in dire danger and rush to protect me from something that may or may not even happen. I’m 20 years old. I know how to safely hang out at the lake without my brothers sitting right beside me.
As for awkward interactions, I recently went to the doctor and he had a student with him. I liked the student immediately. He went to shake my hand as a greeting at one point but my arm was stuck to my stomach and I couldn’t warmly shake his hand back like I wanted to. So he just touched my finger instead. Lol. It was very, very awkward. But I completely understand why he did that and in fact, I have no idea what I would’ve done differently if I had been in his shoes. -
My niece loves puzzles so I would always teach her how to do them better. I’m not close to my sister though and they live an hour away so I don’t get to see them very often. But I know my niece thinks I’m awesome cuz I send her homemade jewelry and colored pictures that she keeps in her room.
My younger cousin calls me his friend though cuz I play PlayStation with him and cards with him. It warms my heart whenever he calls me that too. -
Wow both of these stories are intense. I especially feel for you, DeAnn, with the ventilator. I hate the thought of being in the hospital or anywhere with a ventilator so much that I have a dnr in place. But I also can’t imagine what it would feel like to be slipping, as you say Allysa, and not be able to communicate that.
For me, I’ve been through a lot of intense moments like those, mostly back when I still lived with my birth parents who were not good or supportive in any way. I mean, it took 2 weeks for my birth dad to think I should go to the doctor cuz I was so sick that I wasn’t eating or drinking even though I have always been obsessed with food. And even then, he had my home health aide take me instead of himself. And my doctor took one look at me and said to her nurse, “Call an ambulance.” I was terrified at that point and I became even more scared when I found out that I was going to be alone with the paramedic cuz my home health aide wasn’t allowed to be in the ambulance with me since she was not family. I was only 7 years old. But strangely, once I got in the ambulance, I was actually very calm and felt completely safe. I think that the paramedic was my guardian angel or something. But the most terrifying moment for me was actually when I was around thirteen years old. I wasn’t sick or anything but at random times my lungs would just block up. It literally felt like my mucus formed a wall in my lungs that prevented me from breathing at all. If it happened while I was hanging out with my brothers, I was fine cuz they both knew that me waving frantically at my chest meant that I needed help and they both also knew how to do cough assist with me. But a lot of the time, it happened while I was alone and that was terrifying. All I could do in those moments was suck in my ‘breath’ as best as I could and pray to God that the wall would break so that I could cough the stuff up on my own. I’m so glad that’s not still happening.
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I always become pretty close to my caregivers…ok almost always. But my mom always hates that cuz she thinks that when you open up too much to them, they decide they can run all over you. Which some have. The last one we had actually lied to the police and said that my brother was being abusive to me. It caused a lot of problems. And she wasn’t the only one who did something like that either. But I’m still friends with the home health aide I had as a kid. At least I am on FB. She lives pretty far away. She was like a mom to me though. I’m adopted now but when she was my home health aide, I still lived with my birth mom who was… not a good mom at all. When I was sent to Foster Care, I wasn’t upset about losing my mom. I was upset about losing the home health aide I had. And although we just got our new home health aide last year, I really like her and we talk about some deep stuff. I know all about her daughters for example. The most important thing in my opinion is that I trust her.
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And on those days that you feel like you can’t exercise, even having someone stretch you for you can be a wonderful thing.
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Awe that’s adorable, Halsey!