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    Gosh Stacey, I wish I could help, but my situation is opposite... I feel as if I got my husband back. We are together again after living seperate lives for so many years all the while living under the same roof. I'm sure you will find your way through all this. Kathy
    Kath

    Comment


      Hi, Stacy, Nice to 'see' you again!

      A few questions - What on earth is wrong with the neighbors 'seeing' Joe in the yard? Dealing with the change in 'body image' is one of the things everyone in a chair has to face up to, and get over, to get on with life.

      Sounds like Joe is really having a tough time; if he's depressed, will he talk about his feelings with you? If you're close enough to his rehab hospital, they should have SCI psychologists on staff who can provide him with some counseling. If not, I'd suggest trying to find a counselor in the community he can talk with.

      Just checked your profile, and see that Joe was injured in Sept. 02; that's not even a year post injury. Time is a great healer (oh, what a cliche!), and you're both still in the 'acute' phase of learning to deal with the changed aspects of your lives. Joe is still healing, both physically and emotionally. As time goes on, he'll get stronger physically, and find that he's able to do more for himself, and have more energy and be more active.

      Do try and get some counseling, for Joe and for you, too. Please know that the mourning and sadness you're feeling is normal, and it's OKAY to have those feelings! And do stay in touch here, and know you have a collective shoulder to lean on. (((HUGS))) Jackie

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

      Comment


        HI, Vicky,

        What's up with Bri's UTI? Has she been checked for stones, urodynamics, etc.? Bladder stones can cause repeated infections; her urologist can do a cystogram to see if she has any. If she's doing IC's, they can be undetectable. Matt has a Foley, so we knew immediately because they clogged the cath and he got dysreflexic.

        Have you ever investigated whether there's a site or 'chat' for teens with SCI? Maybe if she had other kids in the same boat to talk with; Matt's a little older than Bri, but he's a real charmer with the wimmens [img]/forum/images/smilies/wink.gif[/img]; I can talk with him and maybe he can email her? Let me know.

        Spring is here, too, and I also saw my first violet! And one of 'my' does was right outside my window yesterday, and she's soo preggers, I actually saw the fawn moving in her belly! Are you a gardener? I'm just itching to get my basil and parsley planted, but know I should wait a while; here in Jersey, Mother's day is the traditional 'no more frost' day, although I do tend to push it!

        We'll be listing our house here in two weeks, and close on the SC house mid-June, moving the end of June. Once we close, our contractor can get right in and start the modifications. I think we're going to ramp the garage, so we can just pull the van right in; Charleston is known for it's mid afternoon downpours, especially in summer, so we're thinking it's a good idea. Besides that, only the bathroom will need mods; all the doorways, etc. are wide enough for the chair to get through. Can't wait to move, but of course my stomach is in knots thinking of all the 'particulars'!!!

        Matt started his cognitive remediation program about 3 weeks ago, and already he's showing gains! Fingers are majorly crossed, hoping that this will give him the tools and confidence he needs to get on with his life!

        AND - ta-da - our aide sees her doc today, and hopefully he's going to okay her to start working again - tomorrow!!!! This has been tough, trying to manage all the house stuff, work a new job, and be Matt's full time mom/caregiver/chauffeur/cook/nurse/counselor!!!

        How's everyone else doing? Check in, y'all!!!!

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

        Comment


          Hi Jackie,

          Yes, Bri had a cystogram in late Feb., and everything looked fine. I think it's just a stubborn one. Her doc put her on five days of Cipro, and it came back after about 3 days. So he put her on a seven-day course this time. She just gets so wiped out, though. Plus, her back pain really increased with this infection, and that bums her out, of course.

          I think it would be great if Matt emailed her; let me double-check with her though, ok? If it's a go, I'll send you her email addy.

          I'm so jealous about "your" does! Mine have virtually disappeared with the nice weather. They better bring the babies back around, after I fed them apples all winter! The family down the road said that since they've lived here they've only seen three winters where the deer have eaten the bark off the trees.

          As to gardening, I'm not very knowledgable. The lady who lived here before us said she couldn't have flower beds because the deer ate everything! But I'm beginning to wonder if they haven't found better feeding grounds, and I could safely plant something...we'll see.

          You sound SO busy, with the move and all. I don't envy you packing, that's for sure! Keep us posted on your adventures...and I sure hope Matt's aide comes back soon!

          Vicky
          ____________________________
          "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
          ~Geraldine Brooks, "Year of Wonders"


          "Be kind...for everyone you meet is fighting a great battle."
          ~Philo of Alexandria

          Comment


            Vicky, Did the doc do a culture, or just a UA? As I know you know, the UA only shows that there are white cells indicating an infection,and is usually available almost immediately. A culture and sensitivity takes three days - first they have to 'culture' or grow the bug, and then test it to see which antibiotics it's sensitive to. If the doc just put her on Cipro after seeing the UA, perhaps it's not the right drug for the bug involved. And 5 days seems like a short time for an antibiotic; I think the usual is at least 7, and sometimes even 10 days.

            Let me know what Bri thinks! (I haven't mentioned it to Matt yet, will do when I hear from you!)

            If you want to try your green thumb in a deer area, build a 6-foot fence!!! And make sure it's got small enough holes that the bunnies don't get through, either! The local garden center will be able to help you out. If you want to plant flowers, they'll also tell you which are 'deer resistant'; there are actually quite a few they don't like. Daffodils and pansies, butterfly bushes are some that come to mind right away. The local gardeners will know for sure, tho!

            Anyone else doing some gardening?

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

            Comment


              Journals

              Marmalady moving to Charleston, SC. Where did you live before that? I hope it is not snowing where you live. I live in sunny California and would not live in the snow for anything again. When we were at the Veterans Winter Sports Clinic in Aspen/Snowmass, it was too hot in the hotel and too cold outside. So it was dressing and undressing to be comfortable. Snow is fun to visit but would not live there again.

              We are retired people and most of you sound young. Most are still working I take it. How did your SCI get injured? I found at the Winter Games that most of the SCI injured were in car accidents. My SCI passed out and fell on his face and compressed spinal cord at C4-C7 level. Now his problem's are pins and needles in hands/legs and numbness in legs. He has had MRI a couple of time and nothing shows. He has a metal plate in neck - he had surgery through the front of throat about a year ago. Has anyone experienced the same kind of problems he is having? Don't know what to do about it. He is walking, but is afraid this numbness in legs will curtail his walking. We live in a townhouse and have a lift to the upstairs. My patio is blazing with flowers and ferns and I have flowers all year around. The only thing I dislike about So. Calif. is too many people. I have kept a journal since the day he had his accident.
              He can't get in to see the Neurologist until May. Must go to primary care doctor to get referral first. The VA would even take longer.

              Comment


                HI, CG, Lived in Charleston for 15 years, now in NJ for the past 11, and going back to Charleston. Yes, we had tons of snow here this winter, but that's not the reason we're leaving!Lots of things just fell into place, and it was the right thing to do!

                Are most of us young? Hmmmm - a loaded question! I'm approaching my mid-50's [img]/forum/images/smilies/eek.gif[/img] [img]/forum/images/smilies/eek.gif[/img].

                Is hubbie's physiatrist with VA? I'd suggest going to someone who's familiar with SCI neuropathic pain, even if you have to wait a bit. You may want to check out the 'Pain' forum, where there's lots of discussion of neuropathic pain.

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

                Comment


                  Marmalady, Thanks for the advice. I've tried to get him to talk to a counselor, but he's not ready yet. I wish that I had the time to. But realistically, there is no way. Work is crazy, we are opening a new office in May. I'm trying to orientate the new nurses, and get everything in order for opening on the 19. Oldest son is in soccer. It's a joy to go to his games. It's my happy time. With six kids, work and caring for Joe, there isn't anytime left. Sometimes I can sneak in some knitting and quilting. That is my therapy. I've tried to find some support groups in the area for spinal cord injuries, but they don't exist.
                  Joe talks to me a lot, which I am thankful for. We have always had a wonderful relationship. Today is our anniversary. I love him very much and I know he loves me. He only says so a dozen times a day. But this is so hard. It's hard to see him struggle and fight so hard. But I am sure you all understand that. Thank you for the encouragement, I appreciate it. It means so much more coming from people who have walked in my shoes.
                  Stacey

                  Comment


                    Stacey, you sound like a goddess to me

                    but then I've always had deep admiration for anybody who can knit. My mom can knit. I know ten-yr-olds who can knit. I have to be shown how to cast on every time I try, and then there's casting off, oh brother.

                    It made me sad when you wrote the other day that you miss your husband. I so remember that feeling, like I would have given anything just to spend an hour with the old him, my rock and the one person who could always be counted on to get my jokes. Intead I had a silent, withdrawn stranger who slept 16 hours a day and then napped in his lunch. He drooled, and needed help to sit up, and had nothing to give, except the occasional reassurance that he was trying as hard as he could to come back to me.

                    He did. He did come back to me. Hang in there.

                    Comment


                      Hi All,
                      I have been reading/lurking in the wings, enjoy hearing about everyone and especially the flowers coming up. We just moved herelast May, so I planted hundreds of flowers last year, my therapy after losing Chad. This year I have them all peeking up and tulips, hyacinths, and daffodils blooming. Took a bouquet to Chad's grave yesterday, I sure miss him it was a year 4/3. I just got his Dodge pickup sold, bittersweet, to an 18 y/o Quad from an hour away. Darling and spooky how much like Chad he is.....smarty, husky, flirt, charmer, cute, and full of life!!
                      My Tom was injured 4 weeks ago in a car accident, fell asleep on way home from work and a couple beers. Splintered a power pole , rolled 3 times. He is still on a Ventilator, he had crushing chest injuries, torn aorta, lacerated lung, and an incidental broken R wrist and torn ligaments knee cap R leg. What a deal, imagine how I made sure he could move everything! What a deal. Tom and I have been together 11 years, married for 4, divorced and back together. Never really apart!!
                      It has been already a long haul for him, they did a trach on Mon. He had been septic with infection from his aorta surgery, and pneumonia, I was a mess, remembering Chad's sudden pneumonia, sepsis and death.
                      I am going to have to have another talk with Big "G" soon!! I don't know why he thinks I am strong enuf for all this!!
                      So glad I didn't make plans for the 'Get Together'. Must have had an omen!!
                      Vicki, hope Bri comes out of this soon. She just needs to get that infection under control, and when they don't feel good it is so easy to slip into the pits.
                      WE ARE YOUNG on this board.....
                      Stacey, I have read your posts with interest, you are so honest and it is good to pour it out here, the respondents are great. You and Joe will get on with it. It is still so early in your journey to "living with it".
                      Take care you all.....Linda

                      Comment


                        Linda,
                        Why is it that terrible things keep happening to some people? The big G better start listening! cause we're just not gonna take it anymore... right? Smack the next person for me who says, "God never gives us anymore adversity than we can handle." I am just itching for the opportunity, cause I have promised myself that is what I will do. Go for it girl.

                        I am so very sorry you must suffer this horrible tragedy Linda. I will pray you have the strength and fortitude you need and for a speedy recovery for your loved one. Kathy
                        Kath

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                          Linda, I'm so sorry to hear of your husband's accident; it really must seem like deja vu. I often wonder about the incidence of post-traumatic stress disorder in family members; I still jump at the sound of an ambulance, and just the other day was at Kessler with Matt when they had a stat code; saw all the docs running, and nurses running with crash cart, and almost lost it myself, remembering the nightmares.

                          My favorite quote from Mother Teresa:

                          "I know God won't give me more than I can handle - I just wish he wouldn't trust me so much." !!

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

                          Comment


                            Linda,

                            What a nightmare for you both! I am so sorry to hear about Tom, and so close to the awful "first" anniversary. I can't believe it's been a year. I sure hope it goes without saying that we're all here for you. Keep us posted, please!

                            You know, Bri totaled my car when she was 16, with nothing but bruises, thank God; a guy sideswiped her at 17 and shook her up but good; then at 18...well, that accident is why I'm here; and then at 19 she was in a second accident. She and her aid were rear-ended right in front of a hospital! I never thought I'd get one of those phone calls again...but there it was. Can you picture how jumpy I was?? Sirens, life-flight helicopters, ambulances, you name it...I cringed, and prayed. We actually celebrated when she made it through her 20th year with no car accidents!

                            Shoulda kept her away from wheels when she fell off her bike and broke her jaw at 7!!

                            Vicky
                            ____________________________
                            "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
                            ~Geraldine Brooks, "Year of Wonders"


                            "Be kind...for everyone you meet is fighting a great battle."
                            ~Philo of Alexandria

                            Comment


                              Happy Easter/Passover to all! I've had a great day, other than hopefully putting out a little fire in another topic - ahem!

                              Planted the last flowers I'll plant at this home, to make it look even more spiffy, so someone will gobble it up at close to list price! We're listing as of May 2 - don't know if I'm ready for this roller coaster ride yet!

                              Easter dinner is lamb chops for me, salmon for hubbie, and veggie barbeque (don't ask!) for Matt! Salad, and artichoke cheese dip with garlic bread. Maybe strawberries and ice cream if we're not stuffed!

                              Happy, happy to all.

                              The first wrens showed up today, at the birdhouses, and singing their little heads off.

                              Hope this day of hope and rebirth and renewal is a special one for all of you.

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

                              Comment


                                Food--Easter--Life

                                Jackie, you can cook for me anytime. I'm making lamb stew and rhubarb pie, can't wait!

                                This morning we sang two LONG services, with 4 violins and a cello and a trumpet or two. The soprano solo is a friend of mine named Linda, who is not especially "religious"--but when she sings, holy smoke!--everybody in the ROOM gets religion, even if they don't want it. [img]/forum/images/smilies/smile.gif[/img]

                                Our daughters handled ushering for the early service . . . amazing to sit up there and watch them in their nice clothes and clunky shoes, handing out the Order of Worship and looking like they belonged. When we came to this church, like 17 years ago, I was just a 30-something single person with an interesting date. I remember clearly looking at the teenagers there and being knocked out by how loved they all seemed to be.

                                One of the lines I sang today went like this: "Did e'er such love and sorrow meet?" Which put me into a certain hospital room, two years ago, watching my stubborn, beloved husband struggle to brush his own teeth. Did e'er such love and sorrow meet? Sure.

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