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    What was bothering me.

    About why I was bothered the other day might not hit home to many but hopefully some can understand.

    I’m nearing 25 and living at my mother’s home. When I was 16 I moved away from home to live my life on my terms. I supported myself. After having a son I started college with a 9th grade education and a GED. Worked full time, school full time, moved into a house, bought a newer car, and more at 21. My point is I have always been VERY independent and these past 3 years of relying on family has become very demoralizing for me.

    So, Last week I contacted my case worker about my needs that already aren’t being met by the home health company. I qualify for an aide in the mornings and evenings throughout the week but I am only being staffed weekday mornings. My family fills in the rest. I told my caseworker this was unacceptable and that I needed something to change before I transfer to the nearest University. I transfer in the fall and I am in the process of discovering available accessible housing. I asked my case worker about contacting other nursing agencies to fill in the needed shifts. Can’t do it. You’re allowed one agency. This is obviously a bunch of bullshit. I asked her what my options were about housing and assistance if I could not get aids to fill the spots. These were my options.

    1.Nursing home, covered by Medicare
    2.Assisted Living, private pay
    3.Private nursing, private pay
    4.Stay at home, Medicare + family

    This was very frustrating to hear and kind of sent me over the edge. I rarely complain, bitch, pout, cry, wish for death, whine or mope. I’m always upbeat, outgoing, fun and optimistic. I try my very hardest to do all I can for myself and selectively ask for help. My issue is dressing, transfers and showers. That’s it. Dressing, transfers and showers. As it appears to be for the moment, those 3 things are holding me back from my independence. Very disappointing to say the least…

    This isn’t an excuse. Just what set me off.
    Say what you mean and mean what you say because those who mind dont matter and those who matter dont mind.

    My Myspace



    #2
    sorry to hear of your woes, man, and thanks for sharing your feelings. i think you're hanging in there great, given the circumstances. perhaps biting the bullet and staying with madre isn't such a bum deal, until you get through college, etc? i know it is frustrating as hell for a young independent minded cat like yourself and so many people are just fine wasting away on their 'rents couch. you'll make it. you've got what it takes upstairs to persevere. here's to a better tomorrow!
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

    Comment


      #3
      Yeah, I hear ya. My brother is wasting away on our couch, maybe watching him is what is giving me the push to move along.
      Say what you mean and mean what you say because those who mind dont matter and those who matter dont mind.

      My Myspace


      Comment


        #4
        This injury is a bitch, man. No matter how independent you may become, there may always arise incidents when you are at the mercy of others. The higher injured you are, that reliance on others only increases and it is very disheartening.

        Comment


          #5
          GotWheels, have you contacted the office of disability services at the university you'll be attending? They may be able to offer some fresh ideas.

          On a personal note, I had to move back home for a year after my undergrad degree. I was AB then but it was one of the most emotionally difficult times in my life so far...going from all the independence that comes with college to being treated like an adolescent again. On that level, I can understand your frustration.

          Please hang in there. You seem like a nice guy and I'm betting things will all work out for the best.
          "The truth will set you free. But first, it will piss you off." -Gloria Steinem

          Comment


            #6
            Certainly a valid feeling! I'm aware of how lucky I am, have been and hopefully will continue to be.

            Hope things work out. Never giving up is key, keep pushing forward.
            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

            Comment


              #7
              Originally posted by GoTWHeeLs View Post
              I try my very hardest to do all I can for myself and selectively ask for help. My issue is dressing, transfers and showers. That’s it. Dressing, transfers and showers. As it appears to be for the moment, those 3 things are holding me back from my independence. Very disappointing to say the least…

              This isn’t an excuse. Just what set me off.
              Hi Gotwheels, Please don't take this is a bad way but I think you need to lose weight, I'm pretty sure I've read you've gained alot of weight because of meds. Being overweight really hinders your ability to tackle dressing, transfers and showers, the 3 things you say are holding back your independence. I didn't go to top Rehab hospital but I remember my PT and OT telling me not to get too fat or too skinny cuz it will only eff-up all the progress you made in here (rehab). Again I'm not saying this as a dig but just something to think about. Much luck.
              A dolla makes me holla, honey boo boo! - borrowed from Honey boo boo child

              Comment


                #8
                Unfortunately, you're not alone. I'm nearing 27, am working on my second degree and run a fairly successful business. Because of funding and similar issues, I have to live at home. I agree with being treated like a teenager, or younger, most of the time, it's very frustrating.

                I don't know about Oklahoma, but some states are pretty bad with Medicare funding for assistance. Have you thought about trying a different state where regulations are better? I know Kansas isn't too bad, but that is a bit away from your family if you need help with something.

                Sorry it's not going well, but know you're not alone.
                C2/3 quad since February 20, 1985.

                Comment


                  #9
                  Originally posted by GoTWHeeLs View Post
                  About why I was bothered the other day might not hit home to many but hopefully some can understand.

                  I’m nearing 25 and living at my mother’s home. When I was 16 I moved away from home to live my life on my terms. I supported myself. After having a son I started college with a 9th grade education and a GED. Worked full time, school full time, moved into a house, bought a newer car, and more at 21. My point is I have always been VERY independent and these past 3 years of relying on family has become very demoralizing for me.

                  So, Last week I contacted my case worker about my needs that already aren’t being met by the home health company. I qualify for an aide in the mornings and evenings throughout the week but I am only being staffed weekday mornings. My family fills in the rest. I told my caseworker this was unacceptable and that I needed something to change before I transfer to the nearest University. I transfer in the fall and I am in the process of discovering available accessible housing. I asked my case worker about contacting other nursing agencies to fill in the needed shifts. Can’t do it. You’re allowed one agency. This is obviously a bunch of bullshit. I asked her what my options were about housing and assistance if I could not get aids to fill the spots. These were my options.

                  1.Nursing home, covered by Medicare
                  2.Assisted Living, private pay
                  3.Private nursing, private pay
                  4.Stay at home, Medicare + family

                  This was very frustrating to hear and kind of sent me over the edge. I rarely complain, bitch, pout, cry, wish for death, whine or mope. I’m always upbeat, outgoing, fun and optimistic. I try my very hardest to do all I can for myself and selectively ask for help. My issue is dressing, transfers and showers. That’s it. Dressing, transfers and showers. As it appears to be for the moment, those 3 things are holding me back from my independence. Very disappointing to say the least…

                  This isn’t an excuse. Just what set me off.
                  That is crap insurance but if anyone on CC wants to different go for it.
                  I went for my yearly and 140 over 90. The doctor gave me 40 mg's 4 times a day. "aee u in 1 year, yea
                  $147.00.

                  Comment


                    #10
                    Originally posted by Le Type Français View Post
                    This injury is a bitch, man. No matter how independent you may become, there may always arise incidents when you are at the mercy of others. The higher injured you are, that reliance on others only increases and it is very disheartening.
                    ain't this the truth! i'm a lowbie @T12 but even today i got stuck. wife and kids went to the grocery store. i stayed home to do my urological irrigation stuff. it's much easier to do in bed (sans jumping children), so i'm laying on my back feet drawn under my butt with pointing knees up, doing my thing...all of a sudden i get a bad lower ab cramp. WTF? i think...it's not BP day, is it? Nope. Ouch! there it is again! them KABLAMO!!! a HUGE pile of steamy wet poop the size of flat volleyball shoots out of my arse all over my feet and pants and bed and EVERYTHING. wow...it's gonna be at least an hour before my peeps come home. needless to say, i made an even bigger mess trying to clean up and by the time my wife got home much of the bed and bathroom were soiled and all the floor in between...and the cat. yes, the cat. don't ask.

                    in the end, we had a good laugh albeit at my expense.

                    moral of the story - everybody poops!
                    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                    Comment


                      #11
                      Originally posted by Hunker View Post
                      That is crap insurance but if anyone on CC wants to different go for it.
                      I went for my yearly and 140 over 90. The doctor gave me 40 mg's 4 times a day. "aee u in 1 year, yea
                      $147.00.


                      this made my head hurt...wtf? i must have failed my saving throw vs. english as a second language.
                      "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                      "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                      Comment


                        #12
                        Originally posted by Daleb View Post


                        this made my head hurt...wtf? i must have failed my saving throw vs. english as a second language.
                        k OCD

                        Comment


                          #13
                          As I told you when we chatted, you don't belong in a nursing home. You have great grades and accomplish much. I don't have the answers. Still, in the craziness called "the system" there must be some sanity somewhere. Don't give up.

                          Comment


                            #14
                            do we have the same brother?

                            mine works but he's an inconsiderate little prick in general let me tell ya.
                            Never take life seriously, nobody gets out alive anyway

                            Frank's blog:
                            http://www.franktalk-scurry.blogspot.com
                            My regular blog:
                            http://www.ithinkithinktoomuchblog.blogspot.com

                            Comment


                              #15
                              Gotwheels,
                              if I were you I would look into your states Independent living Center. I'm from Wyoming but go to school in Colorado and use the waiver program from the Independent living Center in Wyoming. I'm able to hire and fire my own aides and have the opportunity to receive around 35 hours of help each week, although I use less than 30. It has worked out very well for me. I hire students on campus (nice to have workers around your age) and end up becoming good friends with most of them as time goes on.
                              PM me if you have any questions or want more information.
                              Frankly, I'm tired of sitting in this damn electric chair.


                              2010 SCINet Clinical Trial Support Squad Member
                              Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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