Codystanley’s Cidp Story

    • Anonymous
      June 29, 2006 at 1:05 pm

      CODYSTANLEY (LIZ) has asked me to post her story that was on the old site.

    • Anonymous
      June 29, 2006 at 3:56 pm

      for some reason my comptuer won’t let me open the attachment

    • Anonymous
      June 29, 2006 at 5:47 pm

      Liz, you go girl.
      Your tough as nails.
      *bows with respect*

    • Anonymous
      June 29, 2006 at 5:48 pm

      [QUOTE=Pep]for some reason my comptuer won’t let me open the attachment[/QUOTE]
      cause u from kentucky ๐Ÿ˜€

    • Anonymous
      June 29, 2006 at 8:21 pm

      that is probably the reason……..because I am from Kentucky……….but I wasn’t born here, so I’m not sooo bad.

      anyway when i try to open it I get the message “invalid menu handle” which I have never ever had a message like this when i try to open a document. Obviously the format doesn’t agree with my Kentucky computer

      Better be nice to me soapy, I only live 2 hrs from you ………….I could show up in Music City someday and …………………????

    • Anonymous
      June 29, 2006 at 8:27 pm

      [QUOTE=Pep]that is probably the reason……..because I am from Kentucky……….but I wasn’t born here, so I’m not sooo bad.

      anyway when i try to open it I get the message “[B]invalid menu handle”[/B] which I have never ever had a message like this when i try to open a document. Obviously the format doesn’t agree with my Kentucky computer[/QUOTE]

      I didn’t know menu’s came with handles. hey, theres the problem, handles go on skillits. doh! I never hear of dat either.. maybe i could save it and mail it to you. ne1 else got a better idea? maybe change it to a .pdf file and post it agin?

      I can send it to you in just about anything but a .pdf file… wat word processing software u have?

    • Anonymous
      June 29, 2006 at 10:54 pm

      I’ll email or PM jfitzen and see if he knows why you can’t open it. The way to do it is beyond my computer knowledge. I was able to open it.
      Liz

    • Anonymous
      June 30, 2006 at 6:48 am

      [QUOTE=Pep] when i try to open it I get the message “invalid menu handle” which I have never ever had a message like this when i try to open a document. Obviously the format doesn’t agree with my Kentucky computer
      [/QUOTE]
      Pep..
      just right-click the file you are trying to open and select “Save Target As…” and then open it from where you saved it.
      Let me know if you have any questions.

    • Anonymous
      June 30, 2006 at 8:31 am

      tried that, doesn’t work. Whatever format it is in, apparently is not compatible with my computer.

    • Anonymous
      June 30, 2006 at 1:01 pm

      Liz – just now read your story in awe! Your courage and determination are a model for us all – may you be blessed with “Big little improvements” everyday.
      You are cherished just as you are!

      Pep – I can convert the text to pdf and email it to you if you’d like. (or anyone else having a problem.) This is a very powerful story of hope.

      cd

    • Anonymous
      June 30, 2006 at 2:17 pm

      that would be great,

      thanks

    • Anonymous
      June 30, 2006 at 4:50 pm

      OK, I got it and was able to read it. thank you so much for sending it to me so I could read it.

      It is an amazing story and she is an amazing woman.

      I appreciate everyone trying to help me be able to read the story

    • Anonymous
      July 1, 2006 at 10:40 am

      Hello family,
      I wanted my story posted because it may give us HOPE. I had no more then our common treatments and it worked for me. I am no longer progressing. November will mark three years that I have been off “ALL” syndrome medications. I have shown no signs of a relapse and though they appear on a year to year basis, improvements and re-gaining muscle strength are still coming. I COMPLETELY BELIEVE THAT WE DO HAVE HOPE.

    • Anonymous
      July 1, 2006 at 10:56 am

      Liz,
      i’m so happy for you and so fired up, i’m going to the tavern and have a drink in your honor..*salute*

    • Anonymous
      July 2, 2006 at 10:24 am

      Liz, this is great. Stories like yours give me hope that there is a turn-around possible. It seems I made some progress lately. Last week I was even able with my rollator to walk 2/3 of a mile around Bear Lake in the Rocky Mountain National Park, Some of it even a bit uphill. I have not been able to do this for perhaps over a year. My calfs are still sore today, though, and walking is more difficult right now. Wednesday I’ll start another round of ICIG.

      Our daughter and son-in-law dropped off Sydney (now 15 mo.) last night for a couple of days. She has to work at the hospital and he wants to finish up building a porch for a customer.

      Here is Sydney this morning with an applause for you … and me ๐Ÿ˜€

    • Anonymous
      July 2, 2006 at 10:27 am

      Liz, this is great. Stories like yours give me hope that there is a turn-around possible. It seems I made some progress lately. Last week I was able with my rollator to walk 2/3 of a mile around Bear Lake in the Rocky Mountain National Park, some of it even a bit uphill. I have not been able to do this for perhaps over a year. My calves are still sore today, though, and walking is more difficult right now. Wednesday I’ll start another round of IVIG.

      Our daughter and son-in-law dropped off Sydney (now 15 mo.) last night at our house in Ft. Collins for a couple of days. She has to work at the hospital and he wants to finish up building a porch for a customer.

      Here is a picture of Sydney this morning with an applause for you … and me ๐Ÿ˜€

    • Anonymous
      July 2, 2006 at 1:23 pm

      Dear Liz,

      Thank you for your incredible story and for writing it so beautifully! I hope you continue to write and wish you all that is good!

    • Anonymous
      July 11, 2006 at 5:39 pm

      Thanks, inspirational, helpful. Good luck in you work to recover.

    • Anonymous
      August 9, 2006 at 9:55 pm

      Bringing back to the top… for other to view…

    • Anonymous
      October 18, 2006 at 8:04 am

      Brining back to the top!

    • Anonymous
      October 18, 2006 at 9:14 am

      Liz, I am so moved by your strength and determination. Thank you for sharing your story with us. I think this gives real insight to not only patients and families but should be read by all doctors treating a GBS/CIDP patient so that they have an understanding of what great instincts most of us have. We are very tuned into our bodies, we notice the changes, both good and bad and want to be heard when they occur. Not discounted as though we should just be good little patients and do what THEY say.
      Please continue your journey with the same verve that has gotten you this far and know that we are here “holding you up!”

    • Anonymous
      October 21, 2006 at 1:32 pm

      Back to the top.

    • Anonymous
      October 21, 2006 at 11:45 pm

      Hello Family,
      I just thought I would add an update. I am doing very well as far as CIDP goes. I have not shown signs of a relapse or that the syndrome is progressing. I HAVE REMAINED STABLE. November 3rd (I’ll celebrate at the symposium) will mark three years that I have been off ALL and ANY medication for CIDP. That’s right ALL.

      For the past year, I have not been doing too well with rehab. and walking again depends on that. STRESS and FRUSTRATION got ahold of me. I am slowly getting what worries me under control again. I think the symposium will do me alot of good and I’m hoping that I will be able to post my BIG little IMPROVEMENTS again.

    • Anonymous
      November 11, 2006 at 1:34 am

      back to the top…

    • Anonymous
      November 17, 2006 at 8:31 am

      bringing back to top

      To date 645 views and 18 replies.

    • Anonymous
      November 30, 2006 at 11:50 am

      bringing back to top

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    • Anonymous
      December 9, 2006 at 3:45 pm

      bringing back to top.

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