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  • #31
    [QUOTE=PhoenixFiresky;
    BTW, I met my first husband at that school. Everyone had been apologizing to me all day, and I was ready to murder the next person who apologized for something that was my fault. I didn't look, and accidentally crashed into his legs with my footrest. Hard. HE apologized (bad timing!) and I replied "That's fine. I'll let it go this time. But DON'T let it happen again!" He saw the humor, asked me out, and a romance was born. Not every guy is dismissive of a gal on wheels![/QUOTE]


    Nice story!! first husband aye..you sound like me! I met my "first" at college too..UM to be exact lo!
    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” ~Carlos Castaneda

    Comment


    • #32
      Thanks. I think I'm just still in the "how the heck am I going to adapt" mode. I mean, it's a complete 180 degree shift for me to be sitting all the time.

      I know in time I'll adapt, but it just seems that every day brings new frustrations. Beyond the fact that it takes me well over an hour to get dressed, I'm also dealing with the fact that I live in a city (at least until I go back to school) that is very much a "walking" city. I never had to pay attention to things like high curbs and how I'm going to get from point a to point b without elevators to get on the subway, etc. On Monday, I was out and it started raining - It's impossible to hold an umbrella while wheeling, so I wound up getting soaked. It was SOOO depressing.

      Everyone close to me has been incredibly supportive, which is an unbelievable help, but I want to move beyond the frustration phase to the "I need to adapt and move on phase" - The problem is it's so hard to do.




      Originally posted by PhoenixFiresky View Post
      I remember a couple of years after I was
      diagnosed. (Birth defect that would eliminate walking) Like you, I was very physically active. I was 17, trying to start community college, my legs were super-painful and I was totally frusterated by having to haul them around with me when they were relatively useless. I actually spent a couple of months insisting I just wanted them amputated so they wouldn't hurt, I was so mad! Eventually, I found out what effects leg amputation has on the rest of the body and discovered it really wasn't such a hot idea...and I learned to live with it. And to raise a son who is not, I am pleased to say, intimidated by wheelchairs at all. I think the frusteration and anger is something we all have to go through. But the operative word is "through" because we also have to avoid getting stuck in it so we can come out the other side - where life can still be pretty darn good. If you get
      stuck, you still get all the cr*p, but you miss out on the fun parts.

      You'll get there, I think. It just takes time.

      BTW, I met my first husband at that school. Everyone had been apologizing to me all day, and I was ready to murder the next person who apologized for something that was my fault. I didn't look, and accidentally crashed into his legs with my footrest. Hard. HE apologized (bad timing!) and I replied "That's fine. I'll let it go this time. But DON'T let it happen again!" He saw the humor, asked me out, and a romance was born. Not every guy is dismissive of a gal on wheels!

      Comment


      • #33
        Hi and welcome....so much good info here, not to mention it is nice to hang with people that get what you are going through.

        Comment


        • #34
          Always have one of those ponchos handy.
          CWO
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

          Comment


          • #35
            I know what you mean. My husband commented once that he doesn't see me as being "disabled" - just as being "inconvenienced". I told him I thought that "inconvenienced" was a pretty d**n good definition of being disabled in my book!

            I can't help much with the frusteration, unfortunately. But there are a couple of wheelchair umbrella holders out there to keep you dry, at least. Here's one I think is cool - unfortunately, it's a bit pricey:

            http://www.newdisability.com/wheelchairumbrella.htm

            I'm right there with you about the rain. I hate it. It always makes me think the gods are spitting on me - or worse. :-p

            Comment


            • #36
              I am MS, but I wanted to welcome you. Don't know if I can be helpful but there are so many members who will be a great resource for you. My daughter's name is Jillian too, so of course I think your name is beautiful I wish you all the best.
              Best Regards,
              Minnie

              Comment


              • #37
                Hey Jillian,

                Welcome to the site. I'm sorry about your accident. I actually just joined a few days ago as well. I'm a T11 Incomplete para from SoCal. The injury happened four months ago when my friend fell asleep at the wheel. I'm 20 so I'm sure there will be some things that we can talk about that will crisscross.

                I see that you're returning to school and I'd like you to know that I will be making that transition as well next month at UC Irvine. A friend of mine who was injured in her 2nd year of college at UCLA also had to make this adjustment and from what I've heard... it's not easy. As intimidating as it may be though, I'm sure you know that it'll pay off in the end so keep your spirits up!

                I understand your 180 degree turn very well- as many of us do- and I can only say how great it is to know that your attitude is right on track!

                The eye level thing is such a trip... I know. I'm 6'0ft so being in the chair has changed my perspective of the world- literally. I think it'll be easier to accept once we're back in school.

                NYC must be pretty harsh 'cause yeah- I heard it isn't very wheelchair friendly... but there are people advocating for us everyday so it'll get better (I don't know if you've heard about the handicapped taxi's thing going around).

                Anyhow, I'm glad that you have a great attitude about this whole thing. I know it's hard sometimes but, hang in there buddy.

                Also- I don't mean to get all research-y but, there are clinical trials going on for stem cells in humans to treat spinal cord injury. It'll be a matter of time before they find something that'll make us able to use our lower extremities. It gives me something to look forward to so I hope you can also find comfort in it. The guy who is doing the research is at UC Irvine so I'll be keeping an eye on him for sure.

                Comment


                • #38
                  Welcome Jillian!

                  No way to say that paralysis is a good thing, but I've got no problem telling you that it's not a circumstance that will prevent you from having a spectacular life. Don't worry about bouts of frustration, self doubt, self pity, sadness or grief. You would be a weirdo if you didn't have some of those emotions. But with the spark you obviously carry, there will be so very many more good times than bad.

                  It takes a while to stop comparing life "as is" to "the way it should have been". Truthfully, those comparisons never stop completely. But in that mix is a whole spectrum of worse possibilities of "what might have been". It is what it is, and you are going to continue to be amazing.

                  When you get back to UM, give me a shout if you ever get a desire to come down to the Keys. I must say that it's a lot easier to be a warm weather wheeler on flat ground.
                  Foolish

                  "We have met the enemy and he is us."-POGO.

                  "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                  "Dream big, you might never wake up!"- Snoop Dogg

                  Comment


                  • #39
                    I don't know how you'll feel about it, but one thing I read that has helped me avoid feeling sorry foe myself was written by a Zen master, I think. He said that when things go "wrong" in our lives, instead of asking "Why me?" it leads to a better frame of mind to ask ourselves "Why NOT me?" instead.

                    When I get really frusterated, I ask myself "Why not me?". Then I take a deep breath, and focus really hard on only thinking about what I'm trying to accomplish right in that moment.

                    I don't know if that'll help you - everybody is different - it's just something I find useful.

                    Comment


                    • #40
                      Originally posted by PhoenixFiresky View Post
                      When I get really frusterated, I ask myself "Why not me?".

                      I don't know if that'll help you - everybody is different - it's just something I find useful.
                      Sounds like good advice. Next time I'm feeling "why me?"about something, I'll instead ask myself "why not PhoenixFiresky?".
                      Foolish

                      "We have met the enemy and he is us."-POGO.

                      "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                      "Dream big, you might never wake up!"- Snoop Dogg

                      Comment


                      • #41
                        LOL! Works for me! Go right ahead.

                        Comment


                        • #42
                          Thanks again everyone. I can't tell you how glad I am to have found this website. I've been reading some of the posts here and the information is awesome.

                          I'm really excited to be heading back to school next month - especially to trade the cold NY weather for nice, hot, sunny Florida weather again! From what I hear, the school is surprisingly accessible, and so far, everyone who I have spoken to at the school seems really willing to do what's needed to make my life easier. Being away at school is going to force me to become more independent (because my parents/sisters won't be there), so I know that I'll just have to find new ways to do things. It's funny how before I became paralyzed, I never gave a second thought to things like curb height, accessible doors, roll in bathrooms, etc, and now these things are a part of my normal routine. My apartment building in NYC is pretty good, though my room and the bathroom have had to be redone to accommodate my chair.

                          I suppose that what I'm worried about is the stigma of being the girl in the wheelchair now, but I guess that too comes with time. I'm trying desperately to move beyond the "why me" stage, but like you've all said, it isn't easy. I know it will happen though, if for no other reason than necessity - It's not like my lower body and legs are just going to magically start working again, so I need to accept the fact that this is how it is (until some of this stem cell stuff comes thru at least!).

                          In other news, I'm getting ready to take a vacation with my family to Aruba. It's going to be my first vacation since the accident. I'm nervous about the airport and such, but it will be fun to get away. It's going to be weird not feeling the sand beneath my feet, but I am looking forward to getting tan and just unwinding. Does anyone have any tips for surviving the airport/airplane?

                          -Jillian

                          Originally posted by zhaodavid View Post
                          Hey Jillian,

                          Welcome to the site. I'm sorry about your accident. I actually just joined a few days ago as well. I'm a T11 Incomplete para from SoCal. The injury happened four months ago when my friend fell asleep at the wheel. I'm 20 so I'm sure there will be some things that we can talk about that will crisscross.

                          I see that you're returning to school and I'd like you to know that I will be making that transition as well next month at UC Irvine. A friend of mine who was injured in her 2nd year of college at UCLA also had to make this adjustment and from what I've heard... it's not easy. As intimidating as it may be though, I'm sure you know that it'll pay off in the end so keep your spirits up!

                          I understand your 180 degree turn very well- as many of us do- and I can only say how great it is to know that your attitude is right on track!

                          The eye level thing is such a trip... I know. I'm 6'0ft so being in the chair has changed my perspective of the world- literally. I think it'll be easier to accept once we're back in school.

                          NYC must be pretty harsh 'cause yeah- I heard it isn't very wheelchair friendly... but there are people advocating for us everyday so it'll get better (I don't know if you've heard about the handicapped taxi's thing going around).

                          Anyhow, I'm glad that you have a great attitude about this whole thing. I know it's hard sometimes but, hang in there buddy.

                          Also- I don't mean to get all research-y but, there are clinical trials going on for stem cells in humans to treat spinal cord injury. It'll be a matter of time before they find something that'll make us able to use our lower extremities. It gives me something to look forward to so I hope you can also find comfort in it. The guy who is doing the research is at UC Irvine so I'll be keeping an eye on him for sure.

                          Comment


                          • #43
                            Don't get sunburned!!!Enjoy yourself.
                            CWO
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • #44
                              I would try to sit on your cushion..I use a roho..and prop your feet up on back pack or pillows once you take off..

                              Take a imodium before you fly..I always take a valuim too.,,but not before I actually am in my airplane chair..as you need to transfer and all that.

                              I used to use transfer chairs to go to bathroom..but not anymore..I just got a rx for a foley, put it in, tape it to leg, and no worries! I can drink all the water an drinks I want and not stress and get dehydrated! Just take it out when you get there (or keep it in as many places outside of good ol ADA USA are not accessible and just wear a cute long skirt and enjoy! and have another one for your return.
                              "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” ~Carlos Castaneda

                              Comment


                              • #45
                                Jilly, Miami will be great for you. Look in to the Miami Project for networking, info, exercise...also Shake-A-Leg if you are interested in sailing. So much to do in Miami and people are much more open and accepting. Best to you!

                                p.s. if you have any seating issues, Alain at ergo-medic can customize a cushion for you, he's in Miami. I'll look up links when i have a little more time.
                                ---------------
                                Great for making new helpful friends, hints and tips, working out, keeping up with new studies, technology and fun events....

                                http://www.miamiproject.miami.edu/
                                -----------------
                                For boating, sailing....
                                http://www.shakealegmiami.org/site/c....BF03/Home.htm
                                --------------------
                                For custom seating, personalized service (the best!)
                                http://www.ergomedic-usa.com/page3.html
                                ----------------------

                                Not sure if you drive yet but "she rocks" may be able to help you with that and also you may want to look in to DVR here:

                                http://www.rehabworks.org/
                                ----------------------

                                Feel free to message me if you have a question i might be able to answer....
                                Good luck, chica! It may not feel like it now but you'll be better than fine with a little time. Hang tight, fake it til you make it
                                Last edited by Lorrie; 12-04-2011, 06:02 PM.
                                "The sweet is not as sweet without the bitter"
                                ~"Vanilla Sky"~

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