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Thread: new member

  1. #1

    new member

    I am a new member. This site is great. My husband is 6 months status post injury and is now a C6-C7 quad. When he was hurt I was halfway through a pregnancy and he came home while I was in the hospital with preterm labor. We also have a 5-year-old and now have a 3 month old. I am finding it very hard right now to deal with everything and need some encouraging words. It is all so overwhelming. My husband has pretty well been sick ever since he came home from rehab. He has had 3 UTIs in the 3 months that he has been home and his urologist is not much help. He is also having sweating from sympathetic dysreflexia and we have found that Ditropan is helping that, not curing but helping. We have been married for 9 years and I love my husband with all my heart but am finding myself lost in the world of caregiving and being a mother to 2 children (one being a newborn). I know everyone says it will get better and I know we are still really new into his injury but it would be nice to hear rom other people who know what I am going through. My husband is also going through depression (who wouldn't??). I need to see that there is light at the end of the tunnel. Our relationship has always been very strong and I really hope we can weather through this. I know I am rambling but sometimes it just feels good to get things off one's chest.

  2. #2
    Senior Member martha's Avatar
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    MDA, I'm sorry that you need this site, but glad that you found it. The people here have been incredibly supportive and helpful to me and I hope that you find the same thing. My husband is 13 months post injury and I'm his sole caregiver. Even without children it was overwhelming in the beginning and frankly still can be. However, it DOES get better with time. As everyone here will tell you, you need to remember to take care of yourself as well as your husband and babies. If you don't take care of you, you can't take care of them. There are others who will offer much better advice than I can, but I wanted to tell you that you aren't alone, this is a tremendous resource for any and all questions, as well as a great place to just let loose and vent! all the best,

    martha

  3. #3
    Junior Member
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    HELLO MDA.I AM ALSO NEW TO THIS SITE.I AM CARING FOR MY BOYFRIEND WHO WAS INJURED ONE YEAR AGO MAY 6TH.I WISH IT HAD NOT TAKEN ME SO LONG TO FIND THIS SITE.THINGS HAVE GOTTEN BETTER OVER THE LAST YEAR HOWEVER THERE ARE MORE LOWS THAN HIGHS.WHEN MY BOYFRIEND FIRST CAME HOME I WAS SO SCARED OF DOING SOMETHING WRONG(LIFTING,CHANGING HIS CATHETER ETC..)THAT MIGHT HURT HIM.I AM MUCH MORE SECURE ABOUT THAT NOW.I ONLY FREAK OUT EVERY ONCE IN A WHILE AND DO THINGS LIKE TAKE HIS TEMP 10 TIMES TO MAKE SURE HE DOESN'T HAVE A FEVER WHEN HE'S NOT FEELING WELL.THERE IS ONE THING I AM SURE OF AND THATS THAT I LOVE HIM MORE THAN EVER AND WOULDN'T BE ANYWHERE ELSE.I ALSO KNOW THAT THE TIDES WILL TURN FOR US AND THERE WILL BE MORE HIGHS THAN LOWS.I TRY TO FOCUS ON 3 H'S,HOPE,HEALING AND HAPPINESS.I WISH YOU AND YOUR FAMILY THE BEST.

  4. #4
    Senior Member LauraD's Avatar
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    Hello and welcome MDA and Kendallsaunt.
    I am the mother ofHeather age 9. (10 in 4 weeks) She is a T-12
    complete almost 2 years post. In time things do get easier. You
    find a new "normal" life and you learn that life does go on.
    You will be amazed at what you will learn here. Ask anything you
    want and someone who really knows what they are talking about will
    be able to help.

  5. #5
    Hi, MDA, and welcome; I'm glad you found the forum; you'll find that you're not alone, that we've all felt as overwhelmed at our situation as you are feeling.

    Re your husband's urological problems - does he have an indwelling catheter? Or does he do intermittent catheterization? If intermittent, was he trained properly in the procedure during his rehab? If he's getting dysreflexic a lot, and the cause is urologic, you should see a urologist who specializes in SCI, to perhaps have some studies done.

    Who is your insurance carrier? Do you qualify for some home health care for your husband? A letter of medical necessity from both your husband's doctors, as well as your own doctor and the baby's pediatrician may help; as a new mom, you need to keep yourself in good shape to deal with the children and hubbie.

    It's important for you and your husband to keep the lines of communication open, for his benefit as well as yours, and for the sake of the marriage. Depression is common not only in newly injured people, but in caregivers as well. Lack of sleep and stress can intensify the depression, which is one of the reasons it's important for you to take care of YOU!

    As a C6-7 quad, your husband can learn to do much of his own care. We have members on the forums who are quads at that level, and several of them are quite independent, and live on their own. I'd encourage your husband to join the forums also, and ask questions to help him gain as much independence as he can.

    Again, welcome; I'm happy you found us (not happy for the circumstances), and feel free to vent whenever you need - my favorite name for venting is 'emotional incontinence' - something we've all experienced here!

    _____________
    Tough times don't last - tough people do.

  6. #6
    Hi, Kendallsaunt, and welcome! I'm glad you found the forums.

    I know how you feel re being nervous with the medical care that is thrust on us in such a short time. I've done everything you mentioned in your post; the first time I had to do an emergency cath change for my son, my hands were shaking so hard I'm surprised i got it done! And I have been known to tiptoe into his room at night and touch his chest, just to be sure he was still breathing.

    It does get easier; the challenges change, and you find yourself feeling more capable of handling things as they come up. I've told the nurses at Kessler that there were times I felt I could 'comp' the nursing boards, my learning curve was so high!

    As caregivers, we're asked to wear so many hats, in such a short period of time; nurse, aide, pharmacist, banker, lawyer, psychologist, therapist; in addition to our role as family members. It truly is overwhelming at first.

    Please feel free to ask questions, or vent; that's what we're here for! Get your boyfriend involved, too; he'll find many others on the forums who can share similar experiences with him.

    _____________
    Tough times don't last - tough people do.

  7. #7
    Member
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    Welcome - I am also a relatively new member. Although I don't post much I am on this site often, and find others' suggestions helpful, their words of motivation comforting, and discussions of hairy butts amusing (not sure which forum I read that in!) My husband is almost 3 months post injury (C4 incomplete) and we have two children ages 7 and 10. We moved overseas eight months before his accident and many of his caregivers do not speak English. None of it is easy and all of it is overwhelming at times. You develop a strength that you never knew you had, and you get through it one day at a time, one hour at a time, and sometimes just one minute at a time - because you have to. Figure out where to "plug yourself in" to get more energy ... for me, it's a few quiet minutes with my face in the sun (such as it is here in Germany), or being one-on-one with one of my girls, or maxing out my car speakers while on the autobahn - since I'm still doing the daily drive to the hospital. My husband is sad (perfectly natural and to be expected yet very difficult to watch from the sidelines) and I give him everything that I have to give, but some things he will just have to find within himself. You cannot do it all. I hope you have physical support close to you, and that you also find comfort and support at this site - I have. Take care, and please feel free to email me: bethh_61@yahoo.com

  8. #8

    MDA

    Welcome to this site. It is the best on the net concerning our condition and I doubt you'll be able to ask a question that hasn't already been posed so you're in good company.

    I am also C6-7 quad, 22 months post, 38yrs old, married, executive, no children. The adjustment was difficult but as others have said gets easier with time. Very true what Marmalady said about independence at our levels. It can be achieved. Experimentation and practice. Over and over. You and he will figure it out but he has to be willing and motivated.

    You can't do everything and I know that there are a million things running through your mind but to help you, your husband, and your lives together please encourage him to get on this site, ask questions and talk to others who have come before him. Many of our e-mail addresses are posted under our profiles and we are here to get you guys through this step by step one day at a time.

    I realize that this may sound somewhat contrived but the reality is that although your husband may have been able to do 10,000 things before his injury now he can do about 9,000 things. Its just a question of learning how. Depression is common, different for each of us (able-bodied or da'd) in terms of time, depth and recovery but generally overcome within a year or so.

    Again, I encourage your husband to come here, spend a few days if not weeks learning, reading and communicating with others under similar circumstances. Chances are his mood will change dramatically. Mine did about a year and a half ago.

    Finally, to really stress an important point, I think it is vital to your long term relationship (marriage) that you guys try through every means possible to find the money and resources to pay for a caregiver, other than yourself, at least 4-5 days a week. You're his wife and from experience both personally and objectively (of other couples) this is important to distinguish and differentiate between roles as caregiver. Imo the two shouldn't cross that often. Besides you've got two little ones to worry about.

    I'll probably villified for my wife / caregiver comment but I stand by it. It's made all the difference for us.

    Good luck, let us know how we can help.

    Onward and Upward!

  9. #9
    Thanks to everyone for all the replies. It is so nice to know someone is out there who understands. Marmalady, regarding my husband's urological problems. He currently has an infection that can only be treated by either Rocephin injections or IV meds and his doctor has opted to try the Rocephin injections. unfortunately, this also is causing his stools to be loose and now we have that to deal with on top of everything else. He does not have an indwelling. I was taught at his rehab to do clean intermittent caths (he cannot yet do them himself). Everyone has told us to just clean the catheters and reuse them and that there is no need to use gloves as long as I wash my hands. However, we have decided to use new sterile catheters every time for the timebeing and to use gloves and take every precaution we can. UTIs are a pain in the butt to deal with for both me and my husband. His urologist does not seem very interested in our questions. We have, however, found that Ditropan helps his sweating problems. (suggested by someone on this site) The closest urologist who deals with SCI patients is 1-1/2 hours away, so we have been reluctant to go that direction for fear of having to drive there every week for this recurring problem. Also, regarding home health care, we were told at his rehab that the only way we could get home health care was if my husband met Medicare guidelines, which he does not. I am doing my best to care for him and for everyone else in the house. Of course, I feel a lot of guilt about the time I don't have to spend with my 5-year-old as I used to be able to. I think my husband would really like this site and have mentioned it to him a few times and am going to continue. His mood is getting better since the weather is getting nicer and he feels more like getting out of the house. He actually went to the pawn shops here in town today by himself (one of his favorite past times)! I was so happy that he seemed to want to get out and do something besides watch T.V. I have wondered about if my husband might need an indwelling and if it would maybe help with the infections. Any suggestions would be helpful. Thanks again for all the encouragement and information. I look forward to hearing from anyone.

  10. #10
    Senior Member
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    new member

    Hi MDA,
    I'm very sorry about you and your husband's new situation. I know what you're going through. I've been a C-7 quad since 1967. I'm probably qualified to be "geezer" material compared to you and your husband, but I still hold down a full time job at 57, have a wife and 3 kids. Not biological, but mine just the same. This site, it's moderators and Doctor contributors are great and I'm glad you found it sooner than I did,which was last January. Of course, I'm a lot older than the internet so that explains quite awhile. I guess my 1st bit of wisdom from experience is to get rid of those damn sweats, UTI's and I'll bet your husbands outlook improves a lot. They are miserable, but I'll bet like the moderators told you that a good urologist can take care of that problem. They are usually caused by an irritation like the bladder spasms which He's probably had the ditropan prescribed for or a UTI or many other below level Irritations. Ditropan never did much for me. If it's not real severe A.D. and you'd know it if it was, but just a steady goose bump type ask the doctor to try some opiate type painkillers like darvocet or percocet while looking for the problem.. Most of my doctors refused at 1st, saying it just masks the problem. This is true, but it gives relief and a comfortable night's sleep without laying in a sweaty bed while they search for the problem. Once they find the trouble you can dump the painkillers. I used to be ice cold with the sweats often from UTI's or sitting or laying without pressure relief when I was 1st hurt. I got an infected boil like pressure sore on my butt once and my home town dr. in podunk wyoming lanced it all the while thinking I could feel it so he prescribed Darvocet along with the antibiotic. I took 2 darvocet and the sweats disappeared in about 25 minutes. When the sore healed, while still sitting, I no longer needed the Darvocet. I discovered it works for sweating associated with UTI's, ingrown toenails, burns, even helped with a broken leg and fairly bad pressure sores. As I said, painkillers are not a cure, they just make life a bit easier till you solve the problem.. The hardest part is convincing a doctor to prescribe them because most don't consider the cold sweats to be pain and they're worried more about addiction than the misery your in.. If he gets severe dysreflexia from bowel impaction or Bladder not emptying, they won't do a thing. I've had osteomyelitis and lost 6" off my right leg and it took a lot stronger stuff than darvocet to help, but I.V. Demerol made life bearable and made the healing process more comfortable. I could read or do crosswords instead of laying in sweat shivering. I've had lecture after lecture from unknowing doctors about the evils of pain meds. but I've lived 35 years asa quad, I'm not an addict, I just want to be comfortable. I have a reputable neurologist who agrees 100% and I have a job as a prosecuting attorney. When your suffering, it's hard to think about weightlifting rehab etc. My urologist has me with a suprapubic cath and I alternate 4 weeks on low doses of antibiotics-for UTI's and I just don't get them anymore. 1 week on 1 250 mg cipro daily, next week macrobid, next week, sulfate? then a week off. Works for me. I have a tendency to blab on and on cuz I'm the only SCI around, but you can make the best of it. I've shot Elk, deer and antelope from a jeep (Most states game and fish depts. have Handicapped vehicle shooting permits> ) I've camped in tents in Yellowstone, caught trout in Jackson hole and many lakes and streams. Course, you'll need a boat. Snowmobiling is fun too. (notwith the sweats) Maybe your not outtdoor types, but One of the moderators said he can omly do 9,000 things instead of 10,000-he's right. well, so much for the pep talk and med. advice-maybe my methods and advice won't work for you but something will. Hope i didn't bore you. anytime you want to talk or your husband wants to I'll be willing to listen and will welcome either of you. WR

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