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This topic has 4 replies, 4 voices, and was last updated 1 week, 3 days ago by Crystal.

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    • #26072

      Hi! I don’t know if you all remember me, but I used to post on here a lot. I’m sorry for disappearing. My tablet  broke and it took a while to get another one. I probably won’t be  as active as I used to be on here now that I’m back though. For one thing, I’m a lot weaker than I used to be and typing  is quite exhausting. And for another, I’m gonna spend most of my typing energy on a project I’m working on and talking to my brother who lives in a different city now. 🙁 And also, my schedule is much different from what it was and I’m not on my tablet as much as I used to be.
      Aside from my tablet not working, these past few months have been quite an experience. I don’t want to get into all the details cuz I haven’t worked on my project yet today but I’ll tell you  the worst thing that comes to mind: my scoliosis. The curve in my spine has gotten so bad that it has started to protrude out of my hip. It’s actually been like this for a while and my mom actually talked to my doctor about it in October but my doctor didn’t do anything about it. Then in December my other mom was getting me off the toilet and she started freaking out cuz my hip was actually bleeding. My bone had actually broke through the skin. I had to spend an entire month laying on my side to stay off of my hip. It was extremely painful and hard to swallow, but it is over now. My hip is healed up, but we’re keeping bandages and padding on it cuz we know the problem wasn’t solved nor can we solve it. The nurse said all we can do is pad and be prepared for when it breaks again. So that’s what we’re doing.
      My depression has gotten a lot worse due to SMA but my mom and brother have been trying to make me feel better. My brother is the most successful. Lol.
      I’m still alive and that’s what matters.

    • #26074
      Kelly Miller

      I’m very sorry you are in the position you’re in with your hip. I know it sucks to feel like you have no control over your own situation. I know it feels pretty depressing, to first lose your strength over something so trivial as the loss of a tablet, and second to have an incredible amount of pain that’s going to come back, and you can’t really stop it. I’ve been there.

      A year ago almost exactly I went to the ER with a severe pneumonia. To make a long story shorter, I ended up on a vent, I was in the hospital then rehab for a total of 4 months, and I got out with no way to talk because of the kind of trach they gave me. Not only did I get out with a need for a vent that I never had before, but I also had an intense anger because the doctors had made some of the most stupid decisions regarding my care, refusing to listen to my husband or my my family.


      That anger quickly turned into depression that put a black tarp over my entire world. Everything had changed without my consent; I couldn’t change anything back to the way it was. I really do understand how you feel and empathize with you. I’d didn’t tell you all this to say I’m worse than you or to make you feel worse about your own situation. I’ve told you this to say it will get better. Maybe not tomorrow, maybe not next week, or maybe not 6 months from now. But it’ll start with a small streak of light at the end of the tunnel, and that streak will get bigger a little at a time. One day you’ll notice, the whole tunnel will be lit. The rest of the world around it might not be yet, but it’s better than it was, and it’ll be a little bit every time you turn around.

    • #26075
      DeAnn R

      Group hug!

    • #26083
      Alyssa Silva


      So happy to have you back, Crystal. I was wondering where you were and was hoping everything was ok. Sending so much joy to everyone here!

    • #26109

      Thank you gals! *Hugs*

      Kelly, I really appreciate what you said. I’ve been in a dump lately and I’ve been struggling with  finding any reason to continue trying. I even told my mom that I thought it’d be better for me to just go to a nursing home so that they didn’t have to deal with me anymore. But my mom was adamant about not sending me to a nursing home yet. I love her. I’m trying to find that light you’re talking about, Kelly, and I’m looking forward to the day I see it. My mom always says that everyone goes through what they go through cuz they are strong enough to go through it, and I think she is right. These past few months have been torture for me, but TBH I’d rather go through that again than have to have a trach. I think that would be the ultimate blow for me. I’ve already told my moms and doctors that if I ever have to be put on a ventilator, I want them to just take it out and let me go. I don’t want to live like that. Do you still have your trach? Or were you able to get rid of it? Either way, I have incredible respect for you for going through that and still seeing the light.
      Thank you for sharing your story with me.

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