Announcement

Collapse
No announcement yet.

Kate's On Line Journal

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Marmalady,

    Thank you for explaining in more detail what TBI entails. It really puts things in perpective when dealing "only" with SCI. I really can't imagine having to deal with both of them at the same time. My heart goes out to you all.

    I am glad that Matt (my 4-yr old Grandson's name also) is having Therapy again. Is there anything available to help with the TBI? Any therapies or programs?

    You have been a wonderful source of help and inspiration in your posts, and I want to take this opportunity to thank you for all you do for us at this CareCure site. I hope you and your family will be helped in return. My thoughts and prayers are with you, Matt, and your husband.

    Darlene

    Comment


      Marmalady writes: "The behavioral stuff that goes along with that is even tougher - perseveration (repeating or going back to the same thought or idea over and over)...."

      Jackie, I don't have to deal with the memory problems with Steve anymore, but he does still display this "persevation" at times. He can be quite stubborn about it if he gets "stuck" on an idea, but usually I can make him reason through it.

      Russ Byrd

      Comment


        Jackie~

        I can't add anything more comforting or profound; but we're here...ready, willing and able to lend an ear, shoulder, and hand out cyberhugs! Matt will do just fine because he has a fantastic support system, and a wonderful mom. Besides, you were starting to intimidate me a little, you Superwoman you! [img]/forum/images/smilies/wink.gif[/img]

        But seriously, rant...rave...beg for chocolate or wine...whatever it takes! And the same goes for Kath...I've been wondering about my hormones lately too! (I'll be 47 in Dec.)

        Russell, Martha..it was nice hearing from the Texan Two!!

        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


          She says, shaking her head, 'how I ever got the Superwoman image, I'll never know!'. Just 'cause you've never seen me circle the drain, doesn't mean I haven't! In all honesty, tho, I don't usually let it take over; maybe with all that's gone on with the move, ya da, I just got worn down.

          I love you all - I don't know what we'd do without this support system!

          Russ - Thank goodness you don't have the memory stuff; but as we know, TBI is just as individual as SCI, and everyone seems to have their own little twist on the nightmare!

          Thank you all again.
          Jackie

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

          Comment


            Jackie many times I've sat here and read your posts and all those others here, tears [img]/forum/images/smilies/frown.gif[/img] - streaming down my cheeks...feeling so helpless...wondering,wondering why this all happened to us (especially those whose children have been touched)! By coming here and sharing a very small part of our lives with each other we gain perspective by providing each other a window on the world we have been forced into ... and it helps ... somehow it does... you have been an integral part of that process and I concur with everthing everyone has said here!!

            Blessings on you all!
            Obie
            ~ Be the change you wish to see in the world ~ Mahatma Gandi


            " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
            Jane Siberry

            Comment


              Sounds like we need a group hug!
              Kath

              Comment


                It's a new day...

                It's gloomy here today, with a chill in the air. The leaves are beginning to turn so you see splashes of color here and there among the unbroken ocean of trees. The mountains here are covered completely with trees..it's amazing, and so beautiful. The deer are emerging again; they were pretty scarce during the late spring and early summer. I saw a young buck on my way home from work Friday. I also think I saw a small grey fox on the driveway! I've heard coyotes at night, and my neighbor swears she hears foxes yipping...but this was the first trace of one around us.

                How about some good news? Brianna takes oxycontin to manage her pain. When we first moved here, back in December, she was taking 180 mg a day. As of yesterday, she's taking 80 mg a day! Is this not COOL?! I would love to see her off the stuff...out of pain.

                I mentioned this in chat the other evening, but a few days ago, Bri's catheters were delivered by UPS...and no one was home to bring the box off the porch. So the puppies kindly opened it for us, and scattered her catheters far and wide! They didn't really eat the Magic Bullets...just used them as chewing gum. And how can you get angry at those sweet little faces? They probably thought the UPS man was giving them toys; in fact, this might improve relations between him and the dogs! (he's a bit skittish where dogs are concerned)

                Jackie, I thought of you and your love of cooking this weekend..we went to the 13th annual Road Kill Cookoff! [img]/forum/images/smilies/eek.gif[/img] What a hoot. "Deer drop chili: why waste the waste?" "Rabbit: the OTHER white meat." No, I didn't taste anything. I refuse to eat anything that I cannot identify as an acceptible (in my mind) food source! Alas...no cookbooks. I wanted to send one to my friend, an amazing cook, in Alaska. [img]/forum/images/smilies/wink.gif[/img]
                ____________________________
                "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


                  Oh, Vicky - Too bad you couldn't have had a video cam on the pups! Must have been something to see!

                  And LOL re the 'road kill' festival - There's a cookbook that's been out called 'White Trash Cooking' that features, among other things, road kill stew! Grew up eating rabbit, as dad was a hunter - no, it doesn't taste like chicken!

                  And absolutely GREAT news about Bri!!!! Give her a hug!

                  It's chilly here, this morning - actually have goosebumps under my T-shirt! Could it be I'm acclimating to the hot weather already?! [img]/forum/images/smilies/eek.gif[/img]

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

                  Comment


                    Hello Everyone:
                    I¨have read all of your post and only can say that I cant not think of myself ever understanding or accepting [img]/forum/images/smilies/confused.gif[/img]the "situation" it is too painful and the "change" is going to be allways there, perharps the word i think of is "adapting" not accept it.
                    My brother is a C5 SCI no TBI ASIA B incomplete going towards ASIA C (thank god)just 3 months ago... but it seems like a decade or more, my family is exhausted, since I am A MD it is too hard, to painful to "know" an think of everything that may or may not happen, and as I learn this in unevitable. So I was the stronger one in my family to support my brother and my parents and my other brother but sometimes is really too hard and I just want to cry out.. [img]/forum/images/smilies/frown.gif[/img].or maybe run......maybe shut my eyes and wake up like in May or something and maybe just tell my brother that I Think the trip was not such a good idea....but of course that is out of the question and of the possibilities... in the mean time I just try to move on and help him and my family in every way i can with all my love and inconditional care I am capable of.
                    Jackie you are right about TBI sucks, I hope your Matt is better somehow,
                    You all truly amazed me, [img]/forum/images/smilies/smile.gif[/img]

                    NANDA
                    NANDA

                    Comment


                      Nanda~Welcome! 3 months is such a short time; I'm sure you ARE exhausted! But it sounds like your brother may be improving, which would be wonderful news. I'll keep your family in my prayers. I can understand how they would naturally turn to you for information, strength and hope. But where do you turn for those things? I'm glad you found this web site. I hope it helps, in some small measure.

                      It was COLD here Thursday night: 25 degrees!! And this morning it's raining, which means everything feels damp and cold. This is what Brianna used to call a "Yucky-Blucky Day" and I agree completely! [img]/forum/images/smilies/tongue.gif[/img] I think I'll probably be a bum and read today, or work on some counted cross-stitch.

                      What's everyone else got going?
                      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


                        Gawd - Here it is the 5th of October already - can't believe we've been here 3 months already! Most of the boxes are put away, but we still have stacks of 'art' to hang.

                        Project for the day was ripping the carpet out of the living room and hallway - looked yucky, gathered animal hair and who knows what else; beautiful hardwoods underneath (we knew there were hardwoods, but held our breath re the condition!).

                        I think we finally have a bite on the Jersey house - it's all dependent on a contractor getting his ducks in a row to put in a nursing home, and getting approval from the township, so we won't know for sure til the end of October, and won't close til December. I just want it over!!!

                        Kath - I just realized no one ever got back to you re your raising money idea for SCI research! Since your post has gotten buried under my little meltdown, here it is:

                        "I'm working on this idea and need some help from my good friends. As most of you know I accepted a new position in May working for a company that does fund-raising in schools and for non-profit groups. We offer the Entertainment coupon book as a fundraiser. I am trying to figure out a way to raise money for spinal cord injury through Entertainment. Before I pursue this any further I could use some feedback from you. What group would you donate the proceeds to and would you buy a book in your market if you knew a good percentage was going to this cause? kathy"

                        Well - not that i'm biased or anything, but The Spinal Cord Injury Project at Rutgers, headed by a guy named Wise Young, I hear is doing good things! [img]/forum/images/smilies/wink.gif[/img] I would absolutely buy a book, but you might want to broaden the field a little, by mentioning other neurologic disorders, i.e. Parkinson's, Alzheimer's, ALS, etc. Wider market and all that. Let us know how it's going!

                        And Nanda, thank you for the kind thoughts. If I read your post correctly, you're an M.D.? I often wonder about the impact devastating illnesses have on family members who are in the 'profession', and whether knowledge is a plus or minus? You know our thoughts are with you and your family.

                        Take care, all, be well, and let's hear from you!

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

                        Comment


                          Well things are getting better.... I think, my brother is trying to void for himself, we were doing intermitents caths, now( 5 days ago!!) he feels he has to go an tell us so we may help him with a little Crede s method, of course it is too soon and he hasnt get his Urodinamycs done( I do not know if this is well written)I think it may be a good sign since he feels the urge and even can wait until we help him( sometimes), my mother is very sad sometimes, my father too, he is better now because of the Psychology support, he did not want it at first, but perhaps listening to all the people who has some kind of similar or worse problem and pain as us has been helpful to let him talk an fell about it, my other brother is I dont know perhaps sometimes in and sometimes off the things.... me I dont Know exactly sometimes am not very well(emotionally) I cry a lot when I am alone and sometimes with my brothe when he is down and needs to get some comfort...but on the other side I think we are lucky from a lot of thing we are together and love and care for eacho other Juan Sebastian is getting better, and I just know for a fact that we will be alright( dont know when!),
                          Thank you for listening to me...
                          Thank you Vicky yes at least there are good news.
                          Yes Jackie, this things for a MD are sometimes more devastating, of course I can not say "more" because in my home it has been worse for everyone, but as a Doctor sometimes knowing is painful.. but not knowing is worse I think this just should not happen... NOT happen to anyone. [img]/forum/images/smilies/confused.gif[/img]
                          (please excuse my english mistakes) [img]/forum/images/smilies/smile.gif[/img]

                          NANDA
                          NANDA

                          Comment


                            Nanda, Your brother sounds like he has a tremendous caring support system in you and your family. And I'm a firm believer that that is one of the most important things a person can have! And - I'm sure you know this already! - your tears and sadness are all perfectly normal; what you and your brother and family are feeling are the aftermath of the emotional shock; it's good to let it out; I've seen so many people try to be 'stoic', and not let anyone see their emotions, or even deal with their emotions themselves; better to get it out and deal with it as it comes. I still cry at times, even after almost 5 years. And it takes next to nothing to set me off - watching Matt struggle to do something triggers my tears and just sneaks up on me with no warning at all!

                            So happy to hear of your brother's improvements, and may they continue! And what a lovely name he has - Juan Sebastian!

                            I'm glad you've joined our group - and please - don't worry at all about your English - it's far better than my Spanish! [img]/forum/images/smilies/smile.gif[/img]

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

                            Comment


                              Hi Jackie: Thank you for your words of support, I completely understand what you say and agree, I hope Matt is doing better, Juan Sebastian is ok, sometimes he is very anxious and he going through a period in which he is afraid of some things ( like water in his head) because is remembering him the accident.. so it is hard to del withit becuase it hurts so much to see him in pain.
                              Things are pretty much the same.
                              Take care

                              NANDA
                              NANDA

                              Comment


                                Thought I would do a Fall update. The kids are back in school..yee ha and settling in nicely. My son went away for a school outdoor program for 4 days and 3 nights and we never got a phone call. Anyone want to venture how many times I checked the phone for messages? The rigors of sending off a 10 year old..ugh. Then it hit me...he had never been away longer than 18 hours. I had to put his meds and nursing diections together and I found myself wondering, are we ready? My son is NOT SCI but has several disabilities and I have been his caregiver beyond the simple Mom duties. I never realized how much until I had to prepare him for days away. He needed to leave class 8 times a day just for medications. The teacher was a real trooper and carried the meds on the hikes so he could go along. The amazing part was realizing how far we had come....only one machine went (nebulizer) and that was no big deal. It was just 2 years ago and I was packing 3 machines off to school. Life does get better.

                                My 5 yr old is becoming a toothless wonder. I am hoping that the loose teeth stay put until after class pictures. Right now he has 3 missing teeth and 4 more very loose teeth. He says he is a Jackaline (Jack-O-Lantern).
                                He has only been removed from Kindergarten once so we are already ahead of last year.

                                This past weekend we went apple picking, the weekend before, pumpkins. The kids are awiting Halloween with great anticipation and hubbie has already finished off the candy once! No more chocolate for this house.

                                Any updates from others?

                                "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998

                                Every day I wake up is a good one

                                Comment

                                Working...
                                X