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Thread: overwelmed, lost, scared.

  1. #11
    thanks everyone. Yes I was in the hospital when the wounds developed. I don't know exactly when since I can really see that part of my ankle and can't feel anything. Doesn't help that my skin is super sensitive. I've got wound vacs on them now. I'm at a hospital now getting IV antibiotics since it turned out I have an infection in the bone. The wounds are looking sooooo much better since I've been here.
    I'll be d/c'd from here on the 31st, then I have an appointment with a Dr at Physical Medicine and Rehabilitation through John's Hopkins. My PCP referred me there - says he sends his toughest patients there. The Dr I'm seeing just happens to be the medical director of inpatient therapy. I dunno, we're hoping for something good to come of that appointment.

    As far as my lower half - I can't feel if something it touched or leg lifted. etc. However I do have quite a bit of tingling. It's never the same. A couple of weeks ago I felt really sharp pin prick in my big toe. My home nurse happened to be there and pressed where I felt it and it definitely felt more so of a pin prick. Haven't felt that again. With in the last two weeks it's starting to feel like I have compression stockings on. Still having tingling. While I was sitting on the side of the bed today I could feel the pressure against my feet. This week I've started feeling the urge to fart/poop, just can't do anything about it. I can push a little but not constrict the rectum. (sorry if this is TMI).

    Kind of ironic... on my foot I have a tattoo that says "letting go of who I am to become what I might be" I got it about 5yrs ago when I was working on some goals (have lost 130 lbs or so} but now seems like a whole different outlook to that quote.

  2. #12
    Junior Member StephenD's Avatar
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    I've been there too. . . What follows are my thoughts. . . If you find them useful, I'm glad. . If you don't just ignore them. . .

    One of the things that really helped me was to let myself get angry and frustrated. A lot of the advice I got was that I needed to accept my situation and move on. To be honest, that sort of advice always rang hollow to me. Why? Because, in point and fact, I had a pretty deep well of anger about my situation. To that end, I let the anger and frustration fuel me.

    Here's an analogy: imagine yourself on the side of the road, at the end of a long day, in the middle of a rainstorm, and you just got a flat tire. For some personality types, that's the point where you just have the "phuck it" moment and just get it done so you can go home.

    Right now, you're on the side of the road, all four of your tires are flat, you're running low on gas, the rain just turned to sleet, and your cell phone just died. You can't change any of those facts, but you can control the way you react to them. It's time to focus on what you can do. Go on youtube and see how different people handle the sorts of tasks you're struggling with. Ask around on here for tips and tricks. Most importantly, take care of yourself.

    None of this is meant to diminish the sadness you're feeling. Just like you have a right to let yourself be pissed, you have a right to mourn the loss of what you once had. How you balance the two, is something that you need to figure out. . .

    --peace

    "Freedom is what you do with what's been done to you. . ."
    --J.P. Sartre

  3. #13
    I wish you the best and hope you get a goal directed plan of care from the rehabilitation doctors at Johns Hopkins.

    Re: "Yes I was in the hospital when the wounds developed. I don't know exactly when since I can really see that part of my ankle and can't feel anything. Doesn't help that my skin is super sensitive. I've got wound vacs on them now. I'm at a hospital now getting IV antibiotics since it turned out I have an infection in the bone."

    This is what's called a "Never Event" for hospitals. Stage 3 and 4 pressure sores that develop while a patient is in the hospital have to be reported to the insurance company and there is usually a standards review done within the hospital itself. It's an unacceptable outcome, often due to negligence. Sort of like operating on the wrong leg.

    I know you have a lot on your plate right now but please consider consulting with a Maryland attorney who specializes in medical malpractice. Have someone take pictures.

    Sorry for sounding mercenary, but living with SCI can be expensive.

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