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Thread: Wanted to introduce myself.... finally!

  1. #21
    Senior Member fishin'guy's Avatar
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    Mikeswife.as far as pain goes, have white blood count checked.I am at 1 yr anniv. of para due to surgery and I just had a wound pop out 2 weeks ago,in a spot that had hurt me progressively worse when I laid down on my back to do leg exercises. It was a staph infection that had been boiling in a seroma in lower back. It hurt worse and worse in rehabing when I'd lay on my back to do leg exercises.( I to felt like it was hardware too close under my skin). I've now got a draining hole in back, and on antibiotics(big guns, because of length of time it was growing)
    I must add that I have lupus, so i've been on pred and other immuno-supressants which held inflammation down so it didn't inflame as soon as normal systems. Good luck, there are many was for him to beat the pain.

  2. #22
    Senior Member wheelchairTITAN's Avatar
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    Quote Originally Posted by mikeswife
    Thank you everyone for your responses. I guess I should elaborate a little more. Okay, so after 6 weeks in the hospital we were both dying to come home, we just couldn't wait. As soon as we did get home, panic set in for me, I had no call button for the nurse, I was responsible for everything. I pulled through, though it was extremely hard. I remember for the first 3 weeks I would have to turn him throughout the night about 10 times and I just wanted to shoot myself (not really). I was so tired I could barely keep my thoughts straight. I was told in the hospital that 3 well balanced meals per day will keep his bowels happy so I cooked all the time too and waited on him hand and foot. He couldn't transfer on his own yet so I was alway hovering over him. I seriously felt like I was taking care of triplets. Oh yeah, and on top on all that, he was having several accidents (bathroom ones) per day so my laundry duty was huge! I got to the point that if the underwear were soiled I just threw them away, I couldn't take it anymore. So eventually he has gotten stronger, he can do everything for himself (except change the lightbulbs).
    In June we went to a rehab facility called ProjectWalk in Carlsbad, Ca. They set us up for a home program that we do for 2 hours, 3 days a week. Starting this month, Mike will go to a place called SCI-Fit in Danville 2 days a weeks for more rehab. Just last week he bought a lowered truck and put hand controls in it so now he is as independant as can be and I couldn't be happier. I love him to death, we've been married ten years, but I was on the verge of having a break down. This have been physically hard on me (I'm not that big or strong) and emotionally hard on me. So that's our story in a nutshell. Mainly right now the worst thing he is dealing with is pain. There is soooooo much pain in his mid back that I have heard him quielty weeping inthe middle of the night because he can't sleep. It's so sad but there is nothing that I can do for him. We are locating some specialists in our surrounding areas. Someone suggested that maybe one of his rods is moving and the pain may be from that.
    Whew!
    As you both become more independent most of these issues will be overcome and you both will look back and be able to laugh at the early days.

    Probably the most important thing you can do for him and especially for yourself is to NOT become or be his permanent caregiver.

    This will burn both of you out ... as you figured out already it is like "looking after triplets".

    You will be of no support to Mike or yourself if you become his total support.

    I have been doing this for over 19 years ( T8 complete) mostly have lived alone for this time except for those periods of a number of relationships of 2-3 years, 3 or four times since '89 and yes it was nice to be have support.

    If you don't look after yourself NO one will.

    Mike is well beyond where I was 19 years ago and I was just like him and couldn't wait to get out of the hospital. Things went much more slowly in hospitals and rehab then so my leaving after 12 weeks was a scandal.

    Finally ...

    You can't be responsible for him (you can and are supportive) .. he has to take his positive attitude and keep moving ahead

    AND

    If you don't look after yourself NO one will.

    (P.S. Your triplets in three years will need you too )
    Last edited by wheelchairTITAN; 08-07-2008 at 09:19 AM.

    William

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  3. #23
    Senior Member kate's Avatar
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    Hi, mikeswife~

    It is a stupid injury--I think that's exactly the right word.

    I hope you're getting some kind of relief, at least once in a while. When Bruce's injury (c6 incomplete) was still new I struggled every day with trying to balance what he really had to rely on me for (almost everything) and what he could start doing for himself (very little).

    I had this sense that if I had to manage every last thing over the long term, I would end up too resentful, too lonely, too witchy.

    There was this tension between wanting to be there for him and knowing that sometimes being there for him would be unhealthy for us both . . . the rule was that if he could do it himself, then he had to, no matter how long it took.

    This saved us.

    I had to leave the room sometimes when he was trying to put on his shirt. I had to stand and wait while he got himself into the car, and I had to deal with the terror of watching him drive off using hand controls.

    But now, 7 years later, we live pretty ordinary lives. He still has accidents. He still wakes up in the night with neuropathic pain. He still takes longer to do so many things -- and yes, I still change the lightbulbs, do the yardwork, and practice patience. Our kids have grown up and out, pretty grounded in spite of everything. Mostly he's been healthy, and thank God for that.

    It's so weird . . . the old life never comes back. The new one is nothing you would wish on anybody, but somehow it's really okay. For us the keys have been holding on to mutual respect, working to further the cure, and refusing to be sidelined.

    Thanks for introducing yourself; we've got your back.

  4. #24
    Hi Jen and Mike and welcome to Carecure.

    My life partner was injured long before we met and I'm not a useful source of information for new injuries and all that goes with it, but there is a ton of information on this site and people who can answer pretty much any question you might have.

    Glad to hear things are getting easier for you both and best wishes for much continued improvement!
    Reality is merely an illusion, albeit a very persistent one.
    - Albert Einstein

  5. #25
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    Welcome .... reading your elaboration, it sounds like you guys really have your actr together.

    I am t7-8 as well, 3 1/2 years out.

    He needs to talk to his doctor about the pain. It can be addressed. As much as I would rather not, I couldn;t function without some sort of pain meds.
    T7-8 since Feb 2005

  6. #26
    Senior Member Mona~on~wheels's Avatar
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    Welcome Jen & Mike to CC! I'm glad he's got independent.
    I hope his pain is taken care of soon.
    Post often.

  7. #27
    Damn I have another wife, Sally's gonna be pissed. Welcome sweetie, there are great people here with excellent advice. The only stupid question is one not asked.

  8. #28
    Moderator jody's Avatar
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    hello mikeswife

  9. #29
    Welcome

  10. #30
    Welcome Jen

    CC is all about support .... not that you'll always find an answer but a shoulder to lean on and an ear to listen.....any given time.

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