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Kate's On Line Journal

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  • I'm here, Kate. Been a really rough year here.


    • I'm in! What a great idea, Kate. I'll never forget how this forum made me feel safe when nothing else could.

      Marm, I'm absolutely clueless re how you've been doing. I sincerely hope the rough patch is behind you though. It's not like what you needed was a rough patch.
      Last edited by betheny; 11-21-2006, 10:21 AM.
      Does This Wheelchair Make My Ass Look Fat?


      • Marm~
        Email me and let me know if I can do anything to help, even if it is to simply listen. Is Matt holding his own with recovery right now? Does he have a TEVO? One way to catch all those football games.
        Every day I wake up is a good one


        • Originally posted by marmalady
          I'm here, Kate. Been a really rough year here.
          So sorry to hear that . . . you're the person I think of when people are discussing how to live well and honestly and bravely no matter what. If I can be helpful, please let me know how.


          • Sounds good, Kate. As a matter of fact I remember clearly reading this thread on a past Thanksgiving cooking session, so now I'll go through past posts this Thanksgiving. The excitement I had of finding kindred souls was such a help at a distant, desperate time. We are so isolated by these injuries at times, but here there didn't have to be explanations or rude questions -just a gentle humor and camraderie. I have wondered what has happened to some and hope that they are doing well. I'll get the pipe ready, who's bringing the wine? Deb
            P.S. I'm hoping Martha will come out from behind the rock also, her humor and strength have been missed.


            • Okay, here's a brief rundown of the last year; we fired Matt's aide mid-Dec. last year, after he was yapping on the phone while Matt was in the shower; Matt apparently got too hot in the shower, had a seizure, and was slumped over when the aide found him. We had to do CPR.

              Then we find out that the aide apparently never 'got' the instructions right for checking the air in the Roho Quattro cushion, and Matt was bottoming out on his right IT; add to that, that he already had a skin maceration from a groin fungal infection, and we ended up with a 9 cm tunnel down to the IT.

              Matt was a wound VAC failure; was on it for 6 months, including during a course of home IV Vancomycin. We had to travel 130 miles to find a wound care doc - could not locate a specialist here in Charleston. Finally found a plastic surgeon - very cool lady - who also did reconstructive. Matt had a gracilis muscle flap surgery on 9/28. The surgeon felt like he'd do better in recovery home with us, so he was discharged 2 days after surgery, on the KCI equivalent of a Clinitron - a Fluid Air. Was on that for a month, and then on his own mattress, and slowly building sitting tolerance; the wound is doing great. We had planned on getting him into the small rehab center here after Thanksgiving, to do general conditioning and strengthening; the admission lady called us last Monday, and said they had a bed for Tuesday. Sooooo - took Matt to rehab Tues afternoon, and from there it's been a nightmare. DIdn't get the mattress the doc ordered for 3 days; only 2 of the nurses and maybe 1 of the PCAs there have done spinal cord rehab. I won't go into all the issues, but it's ended with us almost pulling Matt out. We spoke with the Nursing Director of the unit yesterday, and have a meeting this afternoon w/her and the physiatrist who's the medical director of the program.

              All of this going on while we were having major house rennovations done; and still putting finishing touches on things. We also have Chris' family coming tomorrow for Turkey day, and house is filthy and I've only begun cooking.

              Soooo - that's been my life in a nutshell! It's going to be a cold day in hell before we hire another aide. Happy holidays, folks!


              • Whatever I can do and whenever the gang decides to do it I'm in.

                I wish you all the happiest of holidays -xo-

                Marm - hope you guys are doing better (((((hugs)))))
                Last edited by Chris Chappell; 11-21-2006, 02:10 PM.


                • This made me giggle ...

                  Thanksgiving Divorce

                  A man in Phoenix calls his son in New York the day before Thanksgiving and says," I hate to ruin your day, but I have to tell you that your mother and I are divorcing; forty-five years of misery is enough.

                  "Pop, what are you talking about?" the son screams. We can't stand the sight of each other any longer," the father says. "We're sick of each other, and I'm sick of talking about this, so you call your sister in Chicago and tell her."

                  Frantic, the son calls his sister, who explodes on the phone. "Like heck they're getting divorced," she shouts, "I'll take care of this," She calls Phoenix immediately, and screams at her father, "You are NOT getting divorced. Don't do a single thing until I get there. I'm calling my brother back, and we'll both be there tomorrow. Until then, don't do a thing, DO YOU HEAR ME?" and hangs up.

                  The old man hangs up his phone and turns to his wife. "Okay," he says," They're coming for Thanksgiving and paying their own way."

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


                  • giggle

                    from me too


                    • Using Jim's computer, lilsis

                      So Jackie, have you gotten all your Christmas shopping done? Sorry, just trying for our brand of dark humor. Actually, Marm is spectacular under pressure and the best of friends. Last year she knew that after being divorced, moving across country, buying and remodeling our house to move in December 23rd we would have a paltry Christmas, so the generous woman made sure we had gifts and joy, besides what I had gotten for Jim they were the only gifts besides the hairball our cat gave us! I hope the unit turns out alright, Jackie and you and Chris get a weekend away. And no matter what the circumstances I know your cooking will be a gourmet feast-you make magic with food. Deb, from Jim's computer.


                      • Originally posted by James Patrick
                        So Jackie, have you gotten all your Christmas shopping done?
                        Yeah, and how about the wrapping? I trust all the bows are perfect and no two packages have been done in the same paper?

                        Sigh. marm, we love you.

                        During the early hospital days, I got so freakin' sick of people treating me like I was made of Chihuly glass that I started demanding that they be rude to me. I was describing my need for the normality of friendly hassling to our 10-year-old, not really expecting her to get it . . . she looked at me without missing a beat and said,

                        "God, Mom, where did you get those ugly earrings?"


                        • Originally posted by kate
                          Yeah, and how about the wrapping? I trust all the bows are perfect and no two packages have been done in the same paper?

                          Actually, dear Kate, it's tres chic to do all your packages in a monochromatic theme - I think newspaper with red yarn will do nicely this year! Or maybe envelopes with gift cards to everywhere!

                          Thanks for the thoughts, everyone - she said as her fingers automatically hit the right keys 'cause her eyes sure aren't working!


                          • Marm~
                            You started this forum and have been the strength for many here many a day. How did you know I use newspaper to wrap? I think I will have to try the red string...string seems to be how I hold my world together these days.

                            A huge cyber hug for you, Matt and Chris. Know that we are pulling for you, big time. If payback was possible, Matt would be surrounded by CareCure Caregivers, giving you 24/7 respite.

                            I will be pulling up one of your Thanksgiving receipies as usual this year. It was a hit the first year you offered it, and I come searching each and every year since.

                            Love ya, lady.
                            Every day I wake up is a good one


                            • Kate, as usual, you have a wonderful idea about the b'day 'party' for the thread. After all, this thread is your baby and all babies deserve birthday parties! Thanks Cheese for letting me know what was going on.

                              Marm, so very sorry to hear the trials and tribulations of your year. I truly hope that Matt's rehab begins to show progress and he's soon home with you and that the remainder of the holidays will be happier.

                              To everyone else, damn but I miss you folks! There is such love and humor and patience and friendship in this group. That's hard to find in the "real world", much less in an online forum.

                              I'm not so sure about perusing my old posts and commenting -- I think most of mine were simply bitching and moaning and pity parties for myself. But there is a wealth of good information, humor and history in these pages and as several others have mentioned, this is the spot that kept me sane at times when sanity seems totally elusive. Actually, I think it's still elusive in my case!

                              Happy Thanksgiving to all. Now it's back to trying to make 'yankee' stuffing that doesn't taste like glue. It's just wrong not to put cornbread in turkey dressing! Wrong, wrong, wrong!


                              • Originally posted by Sci Mom
                                Hey...Happy Anniversary to US!!

                                Exactly one year ago today Martha decided that she liked Kate's idea of an online journal...and this thread was born. We've been coming here for an entire year...some of us posting, venting, opening our hearts, offering wisdom, comfort and humor; some of us reading, or "lurking" for whatever personal reason. Yet we're all in this together. There is such a strong bond between all of us: mothers, fathers, wives, husbands, sisters, partners, injured, able-bodied---the list is endless!

                                I just want to acknowledge how much I value each and every one of you. Thank you, ALL of you, for the insight, hope, and inspiration you have all given me this past year.

                                Here's to another amazing year of Online Journal contributions!

                                I thought I would give everyone this flashback in time. My 5 year old is now 8 year old and still incredibly enthusiastic about Christmas. Right after our 1 year anniversary, Julian died but Martha stayed. I still recall with bitter sweetness how this crowd surrounded her even remotely with love and hugs but how fricking helpless I felt for a "stranger" and her loved one. I swear I felt as if I knew both Martha and Julian in oh so many ways.

                                That was the winter of our asthma and croupe and many hours spent sucking on the forever infamous pipe. As I was reading back, the fear of that dark night in the bathroom, trying to get the little guy breathing became so real again. He still asks about that night, only having partial mental images. He asks why we thought he should camp in the bathroom. The fear escapes his memory. The sense of comfort, of this thread and the calming feeling laughing about the pipe is a memory I will never forget.

                                The boys are "between" this holiday season. The 14 year old no longer believes, the 8 year old, he is sitting on the fence. Today he declined to sit on Santa's lap, saying he was to old for that now. In his wises voice, he asked, "You do know that this is really not Santa Clause, right?" Guess he wanted to break the news gently in the event I didn't know.

                                There are names that haven't posted in quite sometime and I wonder where they are and how they are doing. Russ, how are you and Steve doing?

                                Oh yeah, this thread is SO BIG, I couldn't find my sweet potato pie receipe.

                                Hopefully others will start posting as well.

                                Oh yeah, Martha, it was WONDERFUL to hear your voice again.
                                And Betheny, did your turkey turn out better than it did the first year you posted? I will always think of that turkey when I think of you and CareCure.
                                Every day I wake up is a good one