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    #16
    SCIMOM, bet you miss that beautiful girl! Any progress reports?
    Kath

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      #17
      Stacey - A group of the caregivers here have done the impossible and arranged for a weekend away, just for us, to share, and just chill - we'd love for you to be a part of it, if you can. Don't immediately say no; there are always ways things can be worked out!

      Please email me at

      marmalady@worldnet.att.net

      so I can give you the 'particulars'.

      Also, anyone else who's a caregiver and interested in our 'Caregivers Gone Bad'! weekend, please email me for more info!

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

      Comment


        #18
        Martha, I was do glad to hear that someone else's husband had "crisis" when you left them. I think that was the worst part. The closest rehab was an hour away in Chicago. When I would leave at night to go home to the kids, he would panic. Got to the point they would have to sedate him before I left. There were several times they had to call me in the middle of the night because he would have a panic attack. After only four weeks in rehab they pretty much kicked him out. I think he was so homesick, he just quit trying at therapy.
        So I brought him home. He still has these episodes of seperation anxiety when he goes to rehab in the morning, the funny thing is is that he loves it there. I thought they would go away in time, but they haven't. I really don't know what to do about them. For a while (before I caught on) He would complain of a stomach ache and I would call off work. Now I just send him packin' with his TUMS. It's like sending my oldest daughter off to kindergarten again. That child would have to be pryed off my leg every morning for the entire year!
        To answer your question, We have applied for SSD. We couldn't get SSI because I make too much money (tell that to the gas company!). His benefits don't start until April. There's a five month waiting period here. Right now I am making COBRA payments for his insurance. The rehab that he is attending doesn't accept medicaid. His rehab benefits will run out in April or May, so I'm going to have to call rehab and work out some kind of payment plan so he can keep going. Hopefully they will work with me, if not I may have to bring up the time they left him unseatbelted with the armrests up and walked away. He then proceded to fall out of his chair and landed on his forehead. Fifteen stitches....
        I thought that after being an oncology nurse for 20 years, I knew all there was to know about insurance, but good Lord, I didn't have a clue! I bet by now the have caller ID and fight over who has to get to talk to me....
        Anyhow, I had better get off. I could talk all day, but I have to go to work now. Thanks again for all the encouragement. Sometimes you just need people to tell you it's going to be all right. IT's hard to accept that when you have this black cloud hanging over your head.
        Have a good day..... Stacey

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          #19
          Hi Stacey, Time does help....It is so new and so tough dealing with it all....My son rehabbed at RIC in Chicago. Is that where your husband was at? Do you live in Ill.? There are ways to get help here, sometimes just need to find the loopholes! I am a Nurse also, and my son was injured at 25, C6/7. I was his main caregiver and only one for a while till I about cracked!! I lost my son last April to a rapid Pneumcoccal pneumonia, he became septic...
          My email is mazey@sainet.net
          Your feelings are entirely normal, and you will find wonderful support here. Linda, from Central Illinois

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            #20
            You bet 2 on hospital bed (for about three months)!!! I think after several days I was just too exhausted to wake up every 3-4 hrs, I would never hear the alarm.
            And I can relate to those separation issues... They would call me from rehab at work asking if I was going to be in that afternoon (1hr 20 mins away) because he was having a fit! The first three days he made sure he was in the room by himself and I shared the empty bed in the room (supposedly they made an exeption, they are not allowed to do that), then we would get the "apartment" in the complex about every other weekend. He wanted to get out of there in about two weeks. I think the one weekend at the "apartment" made him realize he cannot do that until he gets a little bit better. They changed some of his meds and the terrible anxiety went slowly away.
            Doing laundry and helping to clean up after accidents don't bother me anymore, I feel like a robot doing that... and I have some kind of schedule set up when I do what...
            ...oh, and we still get those moments when we just embrace and cry...
            So just hang in there!!!

            krajaxa
            [img]/forum/images/smilies/smile.gif[/img]

            P.S.: I smile a lot more these days...
            http://www.tickercentral.com/view/2qot/2.png

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

            Comment


              #21
              Mazey, I am so sorry about your son. It's haard wnough to handle a spouse, I can't imagine dealing with this injury with a child. RIC had a i month waiting list when my husband needed to go, so we ended up at Schwab. CAn't say much for the nursing staff (they use a lot of agency due to the nursing shortage) but Dr. Gittler was fabulous. I've never been around a doctor as wonderful as she. I spent many moments crying on her shoulder and she always told me that I could do this. That I was tough.
              I don't think I mentioned this before, but a month before his accident he had quit his job to go to school full-time and finish his degree in microbiology. He wanted to study stem cell transplant and try to help with spinal injuries. It was a passion of his. I spent many hours listening to him talk about "finding a cure." Strange twist of fate that we find ourselves on this side of it now. His injury was even on the campus where he attended college.
              Strange world we live in........
              Stacey

              Comment


                #22
                a few suggestions if i may please ?
                1) rolling during the night . i know from experience that a C5/6 can learn to roll themselves during the night . if anyone is interested i will try to explain how to them .it is not a problem for me now for 2 reasons , i am incomplete and after learning regained enough function to roll easily and i sleep in a water bed . i remember when i first learnt to do it [pre function recovery ] feeling quite proud of rolling by myself on hearing the nurses coming around the ward to do the ''4 hourly roll''. one of the male nurses on shift was a massive bloke and a weightlifter . i was almost asleep again when in one quick motion before i could argue , a muscular pair of arms went under me and returned me to the position i had struggled so hard to move from !
                2) condom catheters . i have tried differing brands of self adhesive condom caths that i have seen people discuss on this forum , with disappointing results . i have gone back to the ones that use single sided tape . when i apply these i almost strangle my ''oldfellow'' with the tape .occasionally i kink my hose to the bag or roll over on the bag and the condom cath might blow up to about4'' in diameter but it still doesn't leak . the brand i use are called ''urisure'' they are sold by an Australian company but manufactured for them in the US. they are also made of latex which some users are allergic to .
                3) weight . i am 30 kg[66lb] lighter than pre SCI . i lost 20kg[44lb] in my first 20 days in hospital , which i put down to the food [ i never considered myself a good cook until then ] .i am a big eater and think that my walking is so inefficent that i burn a lot of energy just getting around .
                i hope this helps .

                thank you
                dogger

                every day i wake up is a good one .
                Every day I wake up is a good one .

                Comment


                  #23
                  Stacey, What an incredible twist of fate that your husband (BTW - if you give us his name, we won't have to call him 'the hubbie'!) was so passionate about SCI research. My husband, who's a writer, says all the time that if you wrote this stuff, people would say, nah, that would never happen!

                  Tell your husband not to give up on his passion and hopes. Have him get up on this site, and look at the incredible amount of research being done. The founder/administer of this site is Dr. Wise Young, who is the head of the SCI Research Project at Rutgers University in NJ. Wise is the researcher who developed the use of methylprednisolone to aid in reducing spinal cord swelling immediately post-injury. He is on the 'cutting edge' of research, and truly one of the most remarkable human beings I have ever met. He completely redesigned and remodelled the research center so that it's totally accessible for wheelchairs.

                  Make sure to tell your husband his hopes and dreams are still possible!!!!

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

                  Comment


                    #24
                    Dogger, I would love to know how you turn yourself at night. I would gladly have my husband practice it! Last night was purely ridiculous which is why I finally gave up and got out of bed at five in the morning. Also, if you don't mind me getting too personal, are you able to get the condom catheters on by yourself? I'm hoping that my husband (Joe, btw)
                    will regain enough hand function on the right side that he will be able to do this. I haven't had much luck with the darn things. You'd think that being a nurse I would know how to use them so they'd stay on, but alas, no way.

                    Marmalady, I had a very long conversation with the ER doctor when Joe was first brought in. He explained the use of steroids quickly after injury to prevent the immune system from doing further damage to the spinal cord and to help decrease swelling. Now I know who to thank for that.
                    I wish I could get him on here, but he is still so angry and really has no desire to do much but watch tv and go to therapy. I'm trying to be patient, and hope that in time he might start to do some of the thing s he used to. It's so strange not seeing him read or research....... He says that the only thing he can concentrate on right now is his recovery.
                    He actually teased me this morning and I had a good laugh....felt really good...
                    thanks
                    Stacey

                    Comment


                      #25
                      Stacey, Is your husband going for outpatient occupational therapy as well as physical therapy? If he's getting OT, get him to ask them for 'turning lessons'. Or, if he's resistant, be sneaky and call the OT yourself to request it. [img]/forum/images/smilies/biggrin.gif[/img]

                      He has a valid point about just wanting to concentrate on his rehab right now. And has every right in the world to be angry, also. Tell him that while rehab can help him with the physical end of rehab, this website can give him the help and support he needs to mentally recover. There are hundreds of others here in his situation, who will help him along, cry with him, swear with him, give him hints on living, and just be there for him.

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

                      Comment


                        #26
                        Stacey , i was worried you were going to ask me how to describe learning to roll as it has been close to 12 years since i learnt and after i gained some more recovery i haven't had to use it . perhaps someone who has learnt this technique recently could describe it better .we learnt to do it in PT . we would start off by being on a floor mat [ reasonably firm so there was little resistance to rolling ].in a sitting position legs out straight, lift one leg and place it over the other so that the ankles are crossed . then lie down , hold arms together above head and start moving them in big arcs above the head ,from the same side of the body as the upper ankle to the side of the lower ankle , get a smooth swing pattern going then give one big swing as fast , hard and as far as possible . the idea is the last big swing makes the shoulders follow through making trunk and shoulders roll onto the side . this is similar to pushing a child on a swing , start off with small pushes building momentum until you give one last big push to keep them going .like a lot of SCI therapy at the start it seems as though you will not be able to do it and from my memory it takes hours of this to achieve the first successful roll . it does get somewhat easier after this . i remember someone coming over to about 5 or 6 of us down on the mats madly waving our arms in the air trying to get this right .the comment from him was '' looks like palm trees in a wild storm ''.

                        regarding condom caths , i have put these on by myself since it was determined i would not need to do intermittent caths. the only hand function i had at that stage was tendonesis . there were no self adhesive c/caths available in Australia then , single sided tape sheaths were the most commonly used . i used to use my teeth and hands to open packet , ready the tape etc . apart from the staying on issue another problem i seem to have with self adhesive caths is they seem to stick fast to everywhere [ my fingers , sheets if i drop them ] except where they are meant to .

                        i hope this helps .
                        thank you
                        dogger

                        every day i wake up is a good one .
                        Every day I wake up is a good one .

                        Comment


                          #27
                          Stacey I am a C6/7 incomplete and I use a dressing ladder to help me roll in bed that I have some trunk to help I hope that this helps as far as cathing I self cath so I can't help you there best of luck

                          Comment


                            #28
                            Nevada and Dogger, thanks for the information. I talked to Joe last night, and he says taht he can turn on the mat at therapy but can't on the bed because it is too soft. I have a foam mattress on his side of the bed to save his skin. He is able to turn himself on the mat using trunk muscles. Silly question, but what is a dressing ladder? and do you have to have a lot of hand strength to use it?


                            I passed a sign at the church yesterday that read
                            "The testing of faith builds endurance"

                            I should have all the endurance I need for the rest of my life. Since last August I have herniated a disc in my back while training for the Chicago Marathon (my ex-doctor says I'm too old to be running)my father in law was diagnosed with metastatic colon cancer, my mom had emergency open heart, one month later my 24 yearold brother had angioplasty, my husband was injured , and now my 38 year old sister in law had stage 3 breast cancer. Exhausting just thinking about it.


                            So, there's my whining for the day. I actually got to do some quilting this morning before the rest of the household got up. It was a very nice morning. I had to get up at 5:30 to do it, but it was worth it.
                            HAve a great day...... Stacey

                            Comment


                              #29
                              Stacey, What a horrible time you've had! I'm so sorry to hear of all of the problems you and your loved ones have had. I know my religious friends say God doesn't give us more than we can handle, but I suscribe to Mother Teresa's comment that she wished He didn't trust her so much.

                              Know that you're in our thoughts and prayers and this is a good place to vent when you need to or find an ear and a shoulder when you need that too.

                              all the best,
                              martha

                              Comment


                                #30
                                Stacey , if you change to a harder mattress on Joe's bed , put a sheepskin cover over it. in my experience they are very good for preventing pressure sores . i admit to being a bit biased , i run sheep for a living . [img]/forum/images/smilies/biggrin.gif[/img]

                                thank you
                                dogger

                                every day i wake up is a good one .
                                Every day I wake up is a good one .

                                Comment

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