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    Sunday 9:40 pm

    Bruce is playing his "all blues" radio station, mostly to hear whatever good harmonica music they come up with. He wants to be in a blues band, and he could do it . . . dishwasher running, raining cats and dogs, kids monkeying around online on their computer, and I'm about to go hang out with Harry Potter. [img]/forum/images/smilies/smile.gif[/img]

    Been thinking about the proposal for my book, and I have a couple of questions for all of you. First, did you look for books about living through this nightmare when it happened to you? Did you find any? I've done a pretty extensive search, but maybe you know something I don't.

    My titles: CR's books, of course, plus "Inside the Halo" by Maxine Kumin, plus this horrible thing called "Rescuing Jeffrey" (where a dad, I kid you not, debates whether he ought to kill his 17-yr-old son because he's a quad), plus "Tumbling After", which is quite new . . . it's by a SFO author whose husband is a C-4 complete. She lost my interest when she started writing about sleeping with his caregiver in their bed. Also I read a novel called "The Dive from Clausen's Pier", also new, in which an engaged couple goes through some changes after the guy breaks his neck. Do you know of any others? That's the first question.

    Second question: I have this metaphor going in my head about how being thrust into the world of sci is like being a displaced person--an unwilling refugee in your own life. You find yourself longing for the "old country" (your past). You feel set apart and different from everyone around you. You have to struggle to learn new customs, language, & skills. Your children are disoriented and frightened. Your (injured) loved one is always in danger. You know that survival means assimilation (acceptance). You know that no one who hasn't had to relocate to this country will ever understand how it is.

    So, the second question is, does this metaphor work for you?

    Thank you for your thoughts. Off to Hogwarts!

    K

    Comment


      Kate~

      When Brianna was injured, I turned to the internet. I wanted information FAST; I wanted the most up-to-date information. It never dawned on me to look for books--I didn't have time to read a book, I didn't have the concentration span to read a book...I needed answers to MY situation, not the experiences of someone else. Having said that, oddly enough, BEFORE Bri's accident (about a year before) I went through a stage of reading several books about SCI...don't ask me why. CR, maybe? I read a book about the stunt woman who was injured, Heidi something...and several others whose titles escape me at the moment. The woman who wrote the novel "Beaches" also wrote a novel about a woman whose son sustains an SCI...this was about two years ago, maybe three. I couldn't read it. It was too familiar, and I was too close. I had just lived through that, and wasn't willing to revisit it yet. I'm still not.

      As to your metaphor..yes. It works for me. Add that the "natives" (docs, nurses, etc.) can be hostile, less than forcoming with information that you NEED, and often act as it you should know what's going on in this new land. Also the shock of thinking you recognize the landscape, only to find that you're NOT in Kansas anymore...

      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


        Thanks, Vicky--I also didn't go to the bookstore, at least not right away. But--at about 6 months post, I really needed something that spoke to MY experience and my problems. Nada. When I could bring myself to get on the internet, the first place I went was Wellspouse, on the recommendation of a friend. Do you know about them? I'm sure it's a great organization, but . . . I got hooked up right away with some creepy guy who was, like, PRETENDING that his wife had an injury. Imagine preying on people desperate for support! [img]/forum/images/smilies/frown.gif[/img] And so it was a few months more before I was willing to register here.

        Also thanks for your insight about the "natives"--in my mind the hospital staff was more like a bunch of overworked, burnt-out government officials, doing their best with inadequate resources, sometimes decent people, sometimes jerks . . . but always with control and information I didn't have.

        Comment


          Hello, All,

          We're down to 4 days and counting til M-day, and I'm seeing boxes behind closed eyes! Oh, and the sound of packing tape - rrrrriiiiipppp!

          I hope to be back up on line July 7 - we're getting DSL wireless installed in the new house, so it may take a few days. In the meantime, I'm trusting the forum to all of your more than capable hands!

          See ya soon! Jackie

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

          Comment


            Happy Indedpendence Day!

            Hope everyone has a fun, safe holiday. We just might have a sunny day...a break from the incessant rain. I hope so!

            To all the new puppy owners on this forum, and there seem to be quite a few of us...we solved the problem of the little wolf nipping our ankles, pant legs, and any exposed part of us...[drumroll please..] We went back to the breeder and bought one of her sisters! So now I have TWO of them, but they play together constantly, and we haven't been nipped since! It's been great. We should have done this from the very beginning...

            So, we have Liebchen (Libbie) and Heidi. They are so cute...and I love taking them for a walk; they trot along at my heels, side by side.

            How's everyone else doing? Check in!
            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


              Hello Caregivers,
              I feel that I'm desecrating the sacred temple, by entering the inner sactum of the holy order of caregivers. But since I read all of the 300 and some odd posts all in one sitting, I feel I've earned the right(it took a little over 5.5 hrs)

              Truly awesome,It was like watching a T.V. series, you know were you feel like you know everybody personally, and I can't wait till the next episode.Everybody's personality adds such a unique dynamic and demension.I hope and pray that you will someday soon be fired from your caregivers position (because of a cure)

              This would make a terrific book, what a great resource it would be on many different levels.Heck it would make a great movie or Broadway play, who could you see playing yourself in the movie, would it be Sharon Stone, Cher or Kathy Bates, who would play Bri, Matt or Bruce. I know one thing for sure Dogger would have to make a cameo as himself. I could see him now in the back of a limo with the starlets from the cast feeding him fruit, and of course him sitting back and loving it, with him knowing how lucky they are. Don't worry Dogger there will be plenty of beer in the limo.

              I wish that other caregivers would check in and just say hi, adding more members to this cast would be awesome.

              Well in closing I would just like to say thank you and keep up the good work. So after reading all your posts, I shall sum up my feelings using a line from the movie, As good as it gets
              " You make me want to be a better person"

              Thank You
              Jimmy Mack

              Comment


                Jimmy, Thank you for the wonderful post as well as the wish that each is soon fired. Your post made me smile as well as laugh.

                Many indeed feel that the caregiver forum is a safe place...thus a sanctuary. The relief of having a place to drop in a talk freely is priceless.

                Thanks for your wishes as well as insites. Somehow I don't see a Kathy Bates character in this crowd. Having met Jackie, I would say a feist Sally Fields from Norma Rae.

                "Don't worry about the world coming to an end today.
                It's already tomorrow in Australia!"----- Charles Schultz

                Every day I wake up is a good one

                Comment


                  Hi all,

                  All right I haven't checked in in awhile... Have been batling hubbie's terrible neuropathic pain for several weeks now, experimenting with almost everything that would help. The best thing seems to be PT in heated swimming pool at a local rehab. Plus I like that his therapist has been working on his abs since they have grown together with his apetite and pain [img]/forum/images/smilies/rolleyes.gif[/img] ...
                  At least things are starting to move with the worker's comp (it's been only 2yrs and 2 mos). Just had couple of people here on Tuesday to assess the cost of renovations so we know what we can afford to look for (or maybe build). We have looked at couple of houses a month back, but they all seemed like we would be downgrading... And we have found there is not too many ranches around either... Oh, well... [img]/forum/images/smilies/confused.gif[/img]
                  At least we are finally into this IVF thing. We have planned on it for what it seems like such a long time! So we should have about 10 months to find a house and move? LOL!
                  I'm glad everybody is doing great, including the puppies. We got a kitten every summer since Bob got hurt, but I definitely told him that's enough animals in the house (in addition to a german shepherd), at least they all get along.

                  As for kate's Qs:

                  1. I looked for info online instead of sleeping the fist few days. The family has gotten me a couple of CR's books and I'd read them while waiting for Bob to wake up in the hospital and later on instead of sleeping at home again (I always wondered how long someone can go on 2 hrs of sleep at night). And I (and my M-I-L) must have read close to every manual about sci ...

                  2. Seems like we have toughest time to still get this "other" world to understand us or us to understand it. We are tryig to survive this thing. I had Bob tell me a few times on our way to sci clinic that he would just love to walk thru those fields next to the highway... On the other hand he goes to wheelchair races...
                  [img]/forum/images/smilies/smile.gif[/img]

                  Ok, I hope I didn't bore you too much, folks...

                  Good luck to everybody!

                  k
                  [img]/forum/images/smilies/smile.gif[/img]
                  http://www.tickercentral.com/view/2qot/2.png

                  http://www.geocities.com/krajaxa/fair05copy.jpg

                  Comment


                    Thursday evening, 8:20 pm and still 80+ outside

                    Jimmy, what a charming post . . . I think reading all that talk earns you special visiting privileges in the inner sanctum. But only if you take off your shoes first. I know what you mean about seeing these threads as one long novel. If I sell the book, my next project will be to collect and edit a group of tales from these fine people. If I don't sell the book, I'll probably have to get a job at Starbuck's . . .which my family will tell you would not be a great hardship for me!

                    Bruce and Emily just left for a little beach to do a sunset swim--a tradition left over from the pre-injury days. He and one or both kids get in Lake Washington and stay there until the sun is all the way gone. These days, he can't climb back up on the pier. He swims to shore and stands up with the walker and hauls himself out that way.

                    My kids are growing into puberty, what a weird phenomenon! They have decided opinions about rock music, belly shirts, and what constitutes a hot guy. They can be counted on to roll their eyes at our jokes . . .but sometimes they still let us hug them. At the fireworks on the 4th, Heather had her head in my lap, and I was kind of absently stroking her hair. This was apparently in the realm of "things that are still OK", but then I lost my mind and kissed her cheek. She was off me in a flash! "Mom!" I told her I forgot for a minute that she wasn't six years old, which was true.

                    We're all going to Lake Coeur d'Alene next week--our annual trek to camp, and here's the BIG, GOOD news. We're staying in a cabin again, just like "before". We went to this camp when he was 4 months post, still using a legbag, barely conscious more than 5 hours a day. Our friends carried him in his chair to all the places he couldn't get to . . . but we had to stay in the lodge with all the old people and little babies.

                    Then last year, it was a lot better, but still no way for him to deal with a cabin. So, oh boy, I'll let you know how it goes. I plan to spend a LOT of time floating around in my inner tube letting the little fishies bite my toes.

                    Comment


                      We're here! Swimming in boxes, phone order totally screwed up, contractor not finished - they're STILL here - arrrrgh! But we're here, and glad to be in the 'Holy City' of Charleston!

                      Had a first appointment yesterday with a new urologist for Matt - we promptly named him 'Dr. Dick' and probably won't be going back. I haven't seen arrogance like that in a LONG time!

                      Kitchen is 98% unpacked, Matt's room with all his paraphenalia (SP?) is 98% unpacked, and with that, everything else can take its own sweet time! Hubbie leaves Saturday for a week long martial arts camp, and I plan to just take it a step at a time, tool around a bit with Matt, and get to know our neighborhood.

                      Vicky - TWO PUPPIES!!!!! I'm speechless!

                      Kate, re your question about books, at the beginning and for the first few months, I was too wrapped up in Matt's day to day care at hospital and then rehab to even try to read. Hubbie did most of the research on the web, found Wise Young, and someone sent us Chris Reeve's book. I don't think there's a thing written for/about SCI parents; most of what I've seen is spouse-related, except for that horrid book about the guy who wanted to kill his son. Cheesh! It wasn't until Matt was well into rehab that I was able to sit and read anything other than the SCI manual given us by Kessler. After that, though, I was starving for information, or stories, or even just some kind of camraderie with other parents, and it wasn't til I checked onto Wises' site (the former CanDo) that I felt I was really able to relate to others. Also at first, I just didn't want to hear about anybody else's pain; I was so full of pain for Matt, that I just couldn't bear to hear of anyone else's; my heart wouldn't have handled it at that point. Then the caregiver overload, complete with crash and burn took over, and it wasn't until we finally found an aide and I was in my own 'recovery', that I actually began seeking out others in similar situations.

                      Jimmy Mack, thanks for the post and support! We would all love to be 'fired'! As others have said, the caregivers forum needs to be a place for us to vent, with all of our 'caregiver' issues, just as the other forums provide a place for others to vent their anger and frustrations. My goal for this forum has always been to provide a safe place for caregivers to come to.

                      Cheesecake - Sally Fields, eh? I would be so honored!!!

                      I think we're finally getting our phone problems straightened out, and will probably have a new email address soon. Without getting into the myriad details, bellSouth totally dropped the ball on our service order - when we finally spoke to the customer service manager, he said they had just had a big meeting about it, and we were what they called a 'green meanie' - meaning we just fell into a crack somewhere! They've been at the house for two days, trying to get it straight, so hopefully by the end of the day today we'll be totally up and running.

                      Kate, have a wonderful vacation!

                      Maarrrrtttthhhhaaaa ------- where are you?

                      Love to all, Jackie

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

                      Comment


                        Friday morning....

                        And so good to see everyone checking in! I think we have to thank Jimmy Mack for this; what a great post! Thanks, Jimmy; you made me smile. Did you really devote over five hours to this thread?? And forget who's gonna play Bri in the movie..I'm still trying to decide who's gonna play ME! [img]/forum/images/smilies/wink.gif[/img] And yes...Dogger would steal the whole show! Rightly so...

                        Bri's visit to the pain clinic in Morgantown was very successful. True to life, her pain had started getting better, to the point where she's been cutting down on her oxycontin intake [ [img]/forum/images/smilies/cool.gif[/img]] but we consulted with the doctor anyway. We liked him VERY much, and after a thorough examination, he said, in his opinion, that she pulled/tore some scar tissue at her injury site. This would explain the sudden onset of new pain, and the slow recovery. He also thought she was managing things just fine with oral meds, but if things changed or got worse, he had some other options for her. The difference in Bri was night and day. She was so worried that this pain could come out of nowhere, for no reason, and kick her ass, you know? But having an explanation, FINALLY...she was a different person! We were practically giddy on the drive home!

                        I'll post more about her college adventure when I know a bit more; my Irish superstition is telling me I'm going to jinx everything if I say anything now!!

                        Jackie..Welcome back! I can picture you settling in gradually....kitchen and kid's rooms first---that's how I settled in here as well!

                        I'm off to the vet, with my girls. PLEASE...if anyone has a surefire cure for puppy carsickness....HELP!!! The vet is about an hour away along curvy, mountain roads. UGH!!
                        I also need to start working with them on a leash. We're on 44 acres of open land, and being young shepherds, they stay pretty close to home, so we've had no need of fencing or leashes. Ummm...krajaxa....they're good with kittens?? Good to know...
                        And hang in there, girlfriend. I think when it comes to caregiving, it's the pain that's the worst. Watching a loved one go through that... [img]/forum/images/smilies/frown.gif[/img]

                        Martha??? Come back, please??

                        Kath? Obieone? How's everyone else?

                        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


                          SCI Mom,
                          I have Bri pegged as a Julia Roberts, You as Meg Ryan(giddy, fun, everyones girlfriend, a bit of Mother Earth, steady in a storm) and our dear Martha as a Shirley McClain ready to give everyone hell...full of life, love, feisty and gentle at heart. Kate, you are Susan Sarandon..a firecracker, head turned and intellectual.I see Bruce as a bit of a Harrison Ford(adventurer, rugged, no bullet can stop him, gentle romantic man.) How am I doing a stereotyping here? I have never met anyone except Jackie, so I have a visual reference for her. The rest are just visualizations from your stories.

                          Kate, I love that your family has maintained your traditions and yearly trips. Enjoy the cabin as well as the water. Sounds very peaceful and relaxing to me.

                          Jackie, as soon as you are set up, please drop me a line with phone numbers and all. I expect to hear a Southern drawl when I call.

                          Be well everyone!

                          "Don't worry about the world coming to an end today.
                          It's already tomorrow in Australia!"----- Charles Schultz

                          Every day I wake up is a good one

                          Comment


                            What a hoot . . .

                            Cheesecake: Sissy Spacek
                            Dogger: himself
                            Bruce: Harrison Ford! Actually, he kind of looks more like Eric Clapton.

                            And I'd love to be the version of Susan Sarondon I saw in "Bull Durham" . . . esp that scene where she's getting her toenails painted. [img]/forum/images/smilies/smile.gif[/img]

                            So who does Meryl Streep play?

                            Comment


                              Boy, now I really know I have to improve my image around here!

                              Comment


                                I'm back, been traveling with my new job. When I return the amount of posts to read is a bit overwhelming. I was in Troy, Michigan for a week of new hire training, then this week I was in Saratoga Springs, NY. No more traveling until the whole family goes on the week long cruise hubby booked to celebrate my new job and his improved health (now that I only have 13 vacation days a year). This will be our first trip as a family in 4 years.

                                I have been on a bit of a roller coaster, learning my new position including all that's different since 1984, which is when I last worked in corporate America. Selling Real Estate, as I have been is very different. It's good to be out earning a regular income, but I am somewhat unsure of myself and look forward to when I am more comfortable. The learning curve is so painful. We are experiencing some more role reversal, which is good, as my husband is taking more responsibility for his care... I simply do not have the time.

                                I have my fingers crossed this weekend as our college age daughter is in Amsterdam to see and I'm sure experience all that fair city has to offer, ugh! Then back to London, on to Rome, then home for a few weeks before returning to school. She is having a fabulous adventure! Our son's experience in Mexico and Texas will be just as life changing, but so very different. In 2 weeks we have spoken briefly and he was trying to process all he has experienced. He said he could not have ever imagined such poverty and then joyfully talked about playing with the local children. Our family dinners will be quite interesting come August. We are off to a seafood fest tonight and have a houseguest till next week, so I'd best get ready.

                                Life's always a'changin' isn't it? I like the character portrayals, cheesecake. Love to all! Kath
                                Kath

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