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Thread: Hello...Newbie Wife

  1. #1
    Junior Member Deeb's Avatar
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    Red face Hello...Newbie Wife

    Hello...My husband fell 2 1/2 years ago and suffered a SCI. I am just looking for some support for what I thought I'd never have any support for, and that's caring for him. He pretty much does everything on his own again, but there is still a lot I do for him and help him do and I don't mind it but of course there's nobody around where I'm at that has had anything like what has happened to my husband happen so they have not a clue as to what I go through on a day to day basis.
    Anyone willing to chit chat or just share stories I'd be appreciative!

    Dee
    Dee, wife of Don (SCI since 2004)

    Live for the moment, and treat this moment like there is not going to be another.

  2. #2
    Senior Member zillazangel's Avatar
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    Hey. You found us.

    I am Ami, and my husband Chad, as you can see from my sig, is a C4/5 complete (asia A in the new terminology) quad. He has no sensation or movement essentially below the shoulders. He can shoulder shrug and move his head and that's it. Oh wait ... he can talk. Alot!

    He was injured 18 years ago and we met 3 years ago, married 1.5 years ago. So unlike many marriages, we didn't have to endure the adjustment stage of AB to injured.

    I am his 24/7 caregiver in addition to being a mom, having a full time job, being a really crappy housekeeper (trust me on this), and honestly it really is extremely difficult. But I muddle through somehow, antidepressants are a godsend for me, and I attempt to keep a sense of humor about things. Although my and Chad's sense of humor is pretty whacked compared to most people as we go through the dumbest weirdest stuff due to his injury .... plus I am a very irreverent, casual and quirky person to start with, so we tend to just laugh alot. Even today, if you read my post about my incredibly unlucky week, it somehow is funny ....!

    If you want or need advice, a shoulder to lean on, a sob story to tell, a VENT YOU MUST GET OFF YOUR CHEST, or anything else, we are here. Obie and Kate (the mods here) call this "the sanctuary". You can say anything and believe me, one or more of us will understand - and we will all support you.

    Welcome aboard. As always, we're sorry for the reason you're here, but sure glad you found us.

    Ami
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  3. #3
    Junior Member Deeb's Avatar
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    Thank you so much Ami! I'm glad I found somewhere I can come and have someone actually understand. I saw your post on your bad day and WOW! I thought I had bad days! LOL Again, Thank you so much for the welcome!
    Dee, wife of Don (SCI since 2004)

    Live for the moment, and treat this moment like there is not going to be another.

  4. #4
    Junior Member Deeb's Avatar
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    Yeah, Duh, could tell ya what he suffered...sheesh
    He fell 25 feet and suffered and burst fracture at L1 and that night had to have titanium cage/marrow fusion T12 - L2. His second surgery fused L4 - L5 and now we are trying to delay another fusion L5-S1 because the 2 he would have left would wear out and then we would end up back in surgery yet again.

    We are fortunate, he can still walk, but no bending, twisting, lifting over 10 lbs, sitting for longer than 2 hours or much of anything else. We are currently trying to get SSD for him, but we are playing the waiting game and also waiting on the SSI too. Worker's Compensation was taking care of things, but cut off the income in August. It's been rough, but I've learned it's all apart of the circumstances that come with it.

    As for me, I'm starting a new job (making slightly more) tomorrow, and working on getting back into school to get my associates in nursing (RN) and then I want to transfer and get my BSN and become a Certified Nurse Practitioner.

    Sorry so long....
    Dee, wife of Don (SCI since 2004)

    Live for the moment, and treat this moment like there is not going to be another.

  5. #5
    Hello and welcome to CC, Dee.
    This is da place!
    My wife has been T-5 para (with pain) for about 16 months now, thanks to cumulative medical screw-ups. Compared to Ami's husband Chad and some others here she's lucky - she has her arms and hands.
    You're right - 99.9% of the general population, even of your close friends, have no idea of the impact of SCI on self or on caregiver. It does take one to know one. If you've read a few threads you'll see that things can get pretty personal here, and it can be darn helpful sometimes. Over the last year or so I've come to feel that I know a number of the people here very well; some are wonderful folk.
    best wishes,
    - Richard

  6. #6
    Gals and Guys – I write this with a heavy heart. I am too a very Newbie and hope to find some comfort and support in this forum.

    My husband, Thomas, was driving home on Aug 15, 2006 on his HD Fatboy (Bike) when about a mile from home, a lady pulled out from a cross section onto the highway with out seeing Thomas and he T-boned her. In a second, our lives changed. Thomas suffered a open book fracture to the pelvis, a 70% compound fx to the L1, a contused and swollen spinal cord, a concussion, and fx to the C3 to C6 as well as fx to the R ribs of 4-10 on the R side and a R shoulder fx.

    I didn’t know if he was going to live or die. I prayed…..and prayed. He is still alive! :-)

    Thomas underwent surgery for his pelvis on the 16th as it was life threatening. They put a plate and screws in his pelvis to stabilize and put back into place. They also put a screw from his L pelvis to his R pelvic bone (yes – it is big) to stabilize things.

    On the 21st of Aug, he was to have L1 surgery, instead, the neurosurgeon said that Thomas had not had enough improvement in his upper extremities and he wanted to complete a fusion of his C3,4,5,6 as well as take some bone spurs out.

    On Aug 23rd, he had the L1 surgery, which was 9.5 hours.

    Thomas is now in Rehab and working very hard. I thought I could type more, I can't.
    Thanks for listening...



  7. #7
    Senior Member
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    Welcome to Deeb and Pugmom....

    SCI is devastating not only for the patient but for loved ones.... It has been 18months since my husband was injured (T11 complete Asia A) and sometimes I can't remember when he was able bodied... it seems like he has always been in a chair.

    The journey is hard with very good times and very hard times... just remember.... we are 100% here for each other! This is our forum to come to and feel safe.

    Keep coming back!

    Love, Sieg

  8. #8
    Senior Member Broknwing's Avatar
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    Quote Originally Posted by Deeb
    Yeah, Duh, could tell ya what he suffered...sheesh
    He fell 25 feet and suffered and burst fracture at L1 and that night had to have titanium cage/marrow fusion T12 - L2.
    Deeb-
    Your husband's injury sounds somewhat similar to my injury...I also fell 25 feet at work and shattered L1. It was a few days later before they did my fusion surgery(The neuro-surgeon on call decided that my case was too complex for him and called in a better surgeon...to him AND my surgeon I am incredibly grateful) My cage goes from T12-L3 looks much like a complex, extended H on x-rays now...

    We are fortunate, he can still walk, but no bending, twisting, lifting over 10 lbs, sitting for longer than 2 hours or much of anything else. We are currently trying to get SSD for him, but we are playing the waiting game and also waiting on the SSI too. Worker's Compensation was taking care of things, but cut off the income in August. It's been rough, but I've learned it's all apart of the circumstances that come with it.

    Sorry so long....
    I am thrilled for your husband that he can still walk. Are the no bending, twisting, lifting, sitting for longer than 2hrs limitations put on him by his dr or are these physical limitations that he is unable to do? If they're limitations by his dr at what point is his dr going to allow him to do more? If they're physical limitations, what is limiting him? endurance, exhaustion, balance, pain or inability? Knowing this I can try to suggest things that have helped me along the way. I'm still working on the walking thing, actually on a short unplanned break from PT & being able to walk right now due to some foot issues, but hope to be back soon. My endurance is my weakest point, I can only walk for about 250 feet at a time before needing a rest.

    Regarding worker's comp...I don't have much positive to say....My employer claimed I was an independant contractor and therfore not an employee. I had to sue them in order to get ANYTHING paid...I did get my medical bills taken care of and a settlement...BUT looking back and knowing what I know now, I think that maybe I settled too soon...Have you talked to a worker's comp atty? It would be in his best interest to find a GOOD atty and talk with them in order to ensure that the w/c company is paying everything that they are supposed to...ESPECIALLY since they cut his income in August. Seeing as I didn't have a clear experience with how they SHOULD be acting/working, I don't know how they should be paying, but I would think that they should still be paying him some wages, at least until he's got SSI or SSDI....

    I hope that I've been some help here....I don't normally wander into the Caregiver's forum, but I saw Ami's post tonite and I ended up wandering in to see yours as well...
    'Chelle
    L-1 inc 11/24/03

    "My Give-a-Damn's Busted"......

  9. #9
    Moderator Obieone's Avatar
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    Welcome Pugmom and Deeb ...... its always a bittersweet feeling for me when I see a new name posting in Caregiving ..... always glad to be found yet sorry we were needed ... ! My husband Bill was hurt going on 9 years ago, T5 complete and if it weren't for CC this would have been so much more difficult a road to travel ! You will find answers to your questions and a comradery not to be found anywhere else on the net .... so use and abuse us as much as you see fit. My mantra has always been "knowledge is power" .. and recognizing you can't do it alone .. there are times when only someone who has been there .. knows. We have a rock you can hide behind now and again, we share icecream and tears (and if I'm not mistaken there's even an old pipe that gets passed around from time to time ) .... and most importantly we'll remind you .. to take care of you too!! So stay strong and visit often !

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  10. #10
    Senior Member zillazangel's Avatar
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    (((( pugmom )))) I'm so sorry to hear about your husband's injury. That must have been incredibly scary and of course, devastating to you both. Cars that don't look for motorcycles and bicycles are so common; I just wish they would pay more attention.... I'm quite sure you do too. (( hug )) Welcome, and please stay, post and let us know how he is doing.

    Ami
    Wife of Chad (C4/5 since 1988), mom of a great teenager

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