35 replies to this topic

[hillarymcarter]

Finally, a place for us to go! I had actually switched websites over to a caregivers forum....I guess I'm back!
For those who don't know me, I am the wife of a T12/L1 paraplegic. He was injured a little over a year ago when he got run over by a cotton picker. We've been at home for about 6 months now. He's doing well except for a couple pressure sores. He recently (yesterday) began driving...so, that is one anxiety attack after another!
I am so glad that maybe we can get some spouses on this board now and we have a place to go instead of feeling like we are butting in on someone else's topic (I'm good at butting in though!) I know that I've been emailing with a lot of women from this forum that are married/dating SCI men....hope you find this thread so we can all talk together now!

Thankyou Simon!

[AHolland]

Back into your box foul demon. Us wounded husbands are a treat to look after. Why women the world over are looking for husbands like us to work with...

Hey, did someone put some lsd into my meds? Actually, I really feel for you guys some days. As frustrating for us to be in a wheelchair, it is very frustrating and tiring for you guys to look after us. I will personally roll over your male counter parts if they get out of line.

For any relationship to work out, both parties must recognise the difficulties the other faces...walk a mile in my mocassins or something along those lines. None of us would have wanted to be in this situation because of birth or accident, but here we are. I don't think I would want to be my wife on some days (although trying on that red dress sort of intrigues me...lol).

[ASHLEYTHOMPSON]

Good, now a place for us girls to complain.
LOL,
I'm Ashley, my husband John is a T6-7 complete paraplegic d/t an automobile accident in 97. We live in the deep south Louisiana. I'm a nurse and he's a stay at home dad and househusband. We have 4 children ages 13, 8,7,and 6. We have a "his, mine and ours" situation. Day to day life is pretty normal but probably insane to the outside world, its good to have some people in the same boat to vent to, get info from, seek advice etc. Looking forward to some interesting posts.
Ashley

[DrewsLou]

My husband is a T12 para. He was injured in 93 and we met in 2001. I'm not sure what the heck he did without me for 8 years but he seems to have gotten by. LOL

We have been married for 3 years next week. The past 3 years have been pretty hard on us, he has had serious health issues from pressure sores as a result of a surgery gone wrong. He just had a flap surgery done last week and is currently in the hospital recovering. He is doing well and should be coming home soon.

It's really nice to know there are other women (or men as the case may be) who's spouse is a SCI. I look forward to getting to know everyone!

Amy

[marypure]

hi..
i am marrying my best friend in march..he is t-4 para...he was injured in a car accident when he was 2...he is 28 now..
we have been together for 2 years....i am an accountant, and he is a teacher..
this is a great forum idea and i look forward to meeting everyone...
mary

[TonysWoman2451]

Hello All! My name is Amy. My boyfriend Tony is a C1 quad. He was hurt at 12 years old, fell from a platform 5ft off the ground and broke his neck. Tony is 24 now and I am 19. We have been dating for 6 months as of yesterday (Wow he made our anniversary AMAZING, he can be romantic when he wants to be hehehe.) Anyways, I'm still learning how do do certain things. Yesterday I helped his mother put him in bed for the first time. Hope to talk to you all soon
There is a picture of us in my profile.

Edited by TonysWoman2451, 26 November 2005 - 09:29 PM.

[Ana]

I'm not a carer...yet. But I really can learn a lot from you guys. Especially what to expect and what to deal with on a normal, or not so normal, day.
I've been in a long term relationship with a T7 para, but we broke up years ago. Recently I met a C5-6 quad and I am in love!!!!!! It feels good. I know it's gonna be a bumpy road, but I wil stand by him no matter what.
Greetz to all of you!

[bluebutterflyrn]

Hi everyone. I'm the girlfriend of a T-3/4 incomplete para (i think i put the wrong level of injury in an earlier post) How did we meet? I was his nurse at a rehab facility. If you want full details see some of my earlier posts.


Ashley,
Just wanted to know as a fellow nurse how you managed a job, caring for your husband and children? I hope to have this situation some day, just hope I have the energy to do it. You have to be an amazing person.


By the way, my love is now out of the hospital and doing much better. He is in a short term rehab until his mother can bring him home. I wanted to bring him home, but she didn't think I could manage right now, having 2 jobs and not being in very good health of my own. I can't wait for the day we can be together, I'm so tired of tearful good-byes.

[Upstate]

I am so glad to find this site. Thank you for starting it! I have been seeing a wonderful SCI guy for just over 2 months. He's been dealing with this for only 3 years, and he's so full of determination and inner strength, as well as tenderness but also (understandably) bitterness.
He has his own business and works long hours 5 1/2 days a week, so we only get to spend time together on the weekend. I'm a little awkward right now talking about our situation, but I'm going to keep reading the posts here, and maybe I'll get the courage to add my two cents.
Thanks again. It's so encouraging to see that there are other women living and loving in these circumstances.

[Upstate]

Good to hear from you, Maddie. So very sorry to hear about your boyfriend. Three weeks is till early days. Have you and he been going together long? What happened?

[ASHLEYTHOMPSON]

Bluebutterfly, how is everything going, did he get out of the hospital yet. Just thinking of you and wondering how everything was.

[DrewsLou]

After 9 hours of surgery and 2 weeks in the hospital Andy is home! His flap surgery was successful and everything looks good. I think I'm going to have to tie him to his bed to keep him down for the next month but other than that things are going very well.
We weren't really sure what was going to happen this time in surgery. This is his 3rd flap in the past year. He had stage 4 sores on both cheeks and now they are both covered and taken care of. His right hip... the side he just had done... the hip joint was a mess. Apparently his hip was broken at some point... we didn't know... and the joint had calcified and was so tight he could hardly bend forward in his chair to propel himself. His surgeon wasn't sure what he was going to find in there. We were eaxpecting the worst.. including the loss of his leg. Turns out he was able to get everything cleaned up and move his hamstring around to cover the hip. Thanks god for an awesome doctor!!!!!
We just celebrated 3 years of marriage last week. We started the process of adopting earlier this year before he got sick. We are looking forward to getting back moving along with that again here in the next few months. I can't wait to be a mom! Andy is going to be the best daddy!!

[ASHLEYTHOMPSON]

Thats wonderful news. I know how good it feels when those wounds are finally fixed. John had the same type wounds, it was a hard process but well worth it. We also had a great surgeon. The surgeries he performed on John were nothing short of miracles. It still amazes me to look at the scars and remember that there used to be gaping holes there. I'm so happy that everything is going well for you.
ashley

[Upstate]

>Hi Upstate, we had been dating for about two years a little bit, he was trying to >clean the windows in his sister's flat when he fell out of the window onto >concrete, and since his sister lives on the second floor, he ended up with a T6 >injury.
> xMaddiex

That must have been awful for you all. I read from your other posts that you're getting involved in his treatment - talking with his doctor. That's wonderful. My guy had already been living with his situation for three years when I first met him. He had a spinal cord aneurism - no known cause - back then, so I wasn't involved at all at the time. Now, he's starting to get movement and sensation back slowly in his abdomen and legs. One thing that helps a little is long back and leg massages. I feel a bit less helpless when I can do this for him.

[rosalie]

Hi everyone,
I'm Rosalie, married to Avi - T11-12 para for the past 6.5 years (we've been married for 10 years). We have two kids, a boy of 7 (pre-SCI) and a girl of 3.5 (post-SCI - conceived with the help of a Ferticare vibrator and some encouraging and open-minded doctors - if anyone would like some more info just ask).

We are from Israel (I'm originally English but have lived here since I was a kid). Lots of SCIs here, we have many friends with varying injuries but I'm really glad that I found this forum - wish I would have found something like during the first years.

Although Avi is mostly completely independent by now there are still quite a few things that I do for him or help him with, although very little compared to the first couple of years. However, like several of the wives on this forum, I do feel that I have lost my way a bit - its as if I've put my life on hold since the injury, waiting for Avi to get his act together again. Well, now that he's ok and functioning well (since his SCI he's got a degree in business admin., plays wheelchair basketball on the Israel national team as well as his home team, and has recently started working again), I don't quite know what to do with myself for ME . So if anyone has any pointers on getting their life back - I'd be happy to hear.

Thanks,

Rosalie

[hillarymcarter]

You know Rosalie, sometimes I wonder if we "caregivers" don't hold ourselves back.
I feel like I'm waiting on something to happen that would allow me to be myself again. It has probably already happened and I'm stuck in a place that I don't feel comfortable leaving.
I mean, those of us who have been with our spouses before the injury have gone through something very tramatic. I think my experience has just changed my personality forever. I used to be so outgoing and friendly, now I never talk to anybody I don't know and I just feel very guarded with my emotions. I've lost some friends since it all happened. My husband says I'm not carefree anymore.
It is really sad because I don't want to go through live jaded and scared. I wonder how to get out of that rut.
Most of the time, I feel like not only am I holding myself back, but I'm holding my husband back too.
Does any of this make sense? Every since I had a nervous breakdown from him driving, I feel like I can kinda see clearly about what I've been doing. It's kinda like self sabotage. I'm so scared to move out of this place where I'm comfortable that I'm ruining everyone's time.

[Joed]

Hillary...

{{{HUGS}}}

You're still in there, friend.

[Upstate]

hillarymcarter, on Dec 8 2005, 02:24 PM, said:

You know Rosalie, sometimes I wonder if we "caregivers" don't hold ourselves back.
I feel like I'm waiting on something to happen that would allow me to be myself again.  It has probably already happened and I'm stuck in a place that I don't feel comfortable leaving. 

Hillary - I've never dealt with what you've gone through, so I won't presume to say I know what you're feeling, but there have been times that I've felt the way you describe, and I can assure you that you will come through the other side of it.

I hope you know that your posts in this forum are some of the most helpful that I've read. Your warmth and compassion and helpfulness are very much appreciated. You will find your way back.

[hillarymcarter]

Thankyou Joed and Upstate...it's been an emotional week!
I'm happy to report that Bruce passed his driver's test so he can legally drive alone now. The driving instructor insured me that I have nothing to worry about. I am going to learn to relax even if it kills me!!! (a little contradictory, huh?)

[DrewsLou]

Congrats Bruce!!

[bluebutterflyrn]

Hi everyone. Sorry it's been so long since i've posted. Ashley, my love is finally out of the hospital and doing great. He is at the rehab facility next to the hospital and they are doing a wonderful job taking care of him. He still has an infection in one of the wounds, but it is much better than before. For the first time in months I can see some color in his face. Thanks again to everyone for your thoughts and prayers, I'm blessed to still have the love of my life with me and I thank God every day for this. His mom is making arrangements to take him home soon, and he'll get to stay with me on my weekends off. Please continue to remember us, now that he is better, I'm falling apart. I'm having a severe exacerbation of my lupus right now and can only be up for a few hours a day. I've barely got the energy to make it from the bed to the bathroom. Just what little time I've been on this site, I'm already exhausted. I'm just hoping to stay out of the hospital. I laughed (i still have a sense of humor) and told my love that we needed someone to take care of both of us. You know what's really bad? I'm only 28 years old and my grandmother gets around better than me! Well, I'm heading back to bed.
Much love, blue butterfly

[kellykel]

ok this is kelly again i just left the last remark, but i had one question for anyone who could answer this. My boyfriend and I want to have a child, now when it comes to his um..... equipment. lol it still works but he cannot ejaculate because of nerve damage he says he can but it hurts to much. Anyone who has kids by a para what options do we have in getting pregnant?

[hillarymcarter]

There are many, many different options. You need to go and talk to a doctor.

[rooster1005]

Kelly, I have a very head strong partner too. When we first got together, Robert was very much against my help. The thing that worked for me was saying that he help me with my kids because that was a Great way to show that he loved me. I also wanted to help him. When I started helping it was not with the medical needs it was with little things like throwing his pants to him to put on or picking his shoe off the ground. Saying little things like thank you for letting me help you, I love you. The help with medical needs came later. It is a trust thing. Plus put yourself in their shoes. I know that I can say all day that I love helping him and I truly do. BUT, if I were to be in his shoes tomorrow, I am not sure how much help I would accept either.

[knovack]

Hillary,
I must be following you around this web site!

I too am thankful for finding this website (it only took me 2 years 11 months but who's counting)

I wish you lived in WI so I could hug you.

Thank for being here!