I have 24/7 nursing care because of my trach and ventilator. If my injury was any lower, I wouldn't have nurses. Sometimes I'm glad that I'm on the ventilator so that I can have nurses to do all the care that comes along with being a quadriplegic. I don't think I would be as healthy or come as far as I have without nurses. On the downside, I'm never alone. This is one thing that I struggle with. Even if I'm alone in my room, there is always someone within hearing distance of me in case something happens. Sometimes I get frustrated with always having someone by my side, constantly talking and doing stuff for me. It is hard to always think of the positive side to having nurses and people around me. I would never want to not have nurses just for the sake of being alone in the chance that my tubes were to pop off and I wouldn't be able to breathe and put them back together. It's just a feeling that I wanted to share.
Jenni
8 comments:
Hey. Reading this post, I'm kind of curious about some stuff. You mentioned before that you used to be able to breathe off of the vent for like 45 minutes, but now it's down to less (10 minutes, maybe?) And also I know you're incomplete and that you can actually move your arm(s) (saw the video), can feel, and can move your fingers and toes.
I'm not sure if you can move your head, though, or what else you can do completely. BUT, I was wondering, why did you stop practicing breathing on your own? How often do you try to move your arms and fingers and toes? What else can you do and how much do you do it?
This may be blunt, though I definitely don't mean it to be rude, but I can only imagine that if I were paralyzed and could move something, *anything*, I'd be moving it all day long trying to improve it. Or at least, just to do it.
I'm not saying this like I don't think you haven't already gone through this, because I'm sure that you have. I'm actually really curious as to what made you decide to stop (or if you haven't).
that would be very hard....
Jenni, I read your posts almost everyday. Your honesty is quite refreshing. So often people struggle with various life issues but are afraid to share them. I pray for you everyday. I am hopeful that someday soon there will be a medical breakthrough that will allow you and others to be cured of your paralysis. God bless you. Keep strong.
Ryan,
Thanks for the questions. I will answer them in a post within the next week or so. I'm sure other people are curious too.
one thing i've learned is that humanity is naturally curious, the only difference is what people are curious about :)
Jenni, I have not been on your site in awhile and I am sorry. My only excuse is I am very busy. But I felt something leading me to your site tonight and I think it is just for the support of reading your thoughts and to know that is what Margaret could be thinking in her 6 yr old mind. I hope you are doing well. God Bless you and I plan on reading up on your everyday that I can.
Sherline L. Romph
www.caringbridge.org/visit/margaretromph
Hi there,
I would be interested to read Jenni's answer to Ryan's above post, but I would like to point out to him that if he read again the posts in which Jenni describes her movement and feeling, but I did notice that it was not complete and that she could move her arm into a position but not back again, etc. Also, when someone has an incomplete SCI, the paralysis is often initially total (as it was with Jenni) and then recedes as the shock and swelling dies down. However, an incomplete injury is still an injury, and so there is a limit to how much someone can achieve by exercising alone. If you also have a life to be getting on with (work, college, whatever), and you spend hours a day on personal care, there is a limit to how much time you can spend exercising.
Jenni, does your "neck breathing" have to be conscious? Most of us don't breathe consciously, after all; our body breathes without our having to do it, much as it does so much else. If you can't, it may answer Ryan's question as to why you don't do it more or all the time.
This is great perspective. I will try and keep it in mind as I go through my nursing career. Nurses are very helpful but...for 24 hours a day I would get annoyed too.... :) Love, Steph
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