Maybe when I break my leg, I’ll learn.

    • Anonymous
      June 3, 2009 at 1:08 pm

      Hello everyone.

      I wanted to post this in a new thread b/c I know there are some folks that just read what we go thru and learn from us and our mistakes.

      Those of you that know me, know that I am stubborn beyond belief. I have foot drop on both feet, not severe, but enough that I should be using a cane all of the time.

      I struggled for a year to use the cane at work b/c of vanity and what others would say and think. I spent my days walking around here really slow and unable to keep up with my peers as we walk down the hall together.
      They call me “Gramma” or “Gimp”. They USED to call me “Princess”.

      This morning I woke up…tired as can be again b/c I couldnt get to sleep last night. Went to be around 10:30 and was up at 4:30. I got ready for work and stopped at my usual stop, Hyvee gas station for a soda. The clerks there are two older folks, a man and a woman…in their late 60’s or better. Very kind.

      The gas station was busy for a Wednesday morning. The usual construction workers were in there getting their coffee…a few others there as well.

      I got out of the car…without the cane- feeling pretty good. Wearing my favorite color, brand new pair of New Balance tennies, a good hair day, vacation tomorrow, what could be better.

      I walk in the door and walk with my head held high…unusual for me b/c I usually look down at the ground b/c I have to concentrate with each step I take. I got about, oh…four steps inside…just enough to get right in front of the counter where many folks were waiting in line to check out and the next thing I know, I’m on the FLOOR. I wanted to die.

      There was nothing in the way. Just my feet. My feet that wont work like they are suppose to.

      I smacked my hand on the icecream cooler and got a rug burn strawberry on my knee. I got up as quickly as I could…EVERYONE turned to stare…the two clerks quickly come running over…”Are you ok” Yeah, I’m fine…just let me die.

      I insisted that I was fine yet I [B]wanted[/B] to cry and carry on with a tantrum. I wanted to scream that I hate my life and I hate what CIDP has done to me and my pride. I wanted to say, just let me be invisible so that nobody has to ever see me b/c I’m “Gramma” and a “Gimp”.

      I got my soda and choked back the tears as I paid for it, got to the car and beat the crap out of my steering wheel and had my tantrum on the way to work.

      Then I realized. I’m going to work. I only fell b/c I was too stubborn to take my cane in. I should be able to walk a short distance without it, but I cant…but, I CAN walk. A lady called me recently, newly diagnosed with CIDP…she is 68 and scared. She’s in a nursing home for therapy b/c they cant figure out what to do…she CANT walk. I felt awful for being so greedy. I felt awful for feeling so bad about something that was my own stupid fault.

      I’m 38 and I’m going on vacation with just my husband tomorrow. The cane wont leave my side. Maybe others will stare…maybe they will tease…but what’s more embarassing ? Laying on the floor b/c I fell or walking upright with the cane.
      One day, I’ll fall and have to go by squad b/c I’ve broken something. I cant do that to my family. I have got to let go of the pride and be proud of what I CAN do.
      thanks for listening to my story…I feel better now. I learned alot about myself today. I learn more and more all the time. Admitting it is the hardest part. I’m greatful to be me…I just dont always like it.

      take care friends…
      I’ll post when I get back. Off to Myrtle Beach. It’s been 7 yrs since my husband and I have been alone together…………


    • Anonymous
      June 3, 2009 at 1:46 pm

      Hi Stacey,

      It’s unfortunate that your co-workers are rude and unfeeling. I’ve also been the recipient of “cute” names. When it occurs I’m a bit blunt…oh heck, might as well tell the truth, I’m VERY blunt. I tell people to address me by my given name or don’t expect a response. I also advise them that calling me something other than my name could be deemed as a type of harassment or intimidation which is against company policy. They usually shut up PDQ. ๐Ÿ˜‰

      You may also want to remind them that their health status can change in an instant as no one is infallible.

      Use your cane. I know it’s much easier said than done to deal with the stares, but, stare back with a small smile on your face. Trust me, the “starer” (is that word?) will turn away in embarrassment. I was very active and the picture of health when I was diagnosed with GBS at the age of 25. Yes, I felt self-conscious and sad and…you name it, I felt it. However, I was overjoyed when I was finally able to walk and didn’t really care what tools I needed to do so.

      Relax and have a wonderful vacation!!

      Take care,


    • Anonymous
      June 3, 2009 at 3:09 pm

      Stacey, I wont say a word:( , except have a wonderful vacation. I love the eastern beaches, have been to many (in the past).
      I will tell you a broken ankle is one of the reasons I am in the power chair, permanent damage, but I am old. My email has changed. When you get back fill me in on the lady you spoke to. Is she near here?
      Have fun and enjoy the honeymoon. Bye, Jean

    • Anonymous
      June 3, 2009 at 5:05 pm

      Stacey! I think we all at times have let our pride get in our way! I remember one time a while back ago grabbing the ladder in our garage because I wanted to put my new curtains up. Did not want to bother my husband. I got up on that ladder and lost my balance and away it went. Got my knee something aweful! I did end up in the ER for that one! Now I let my husband use the ladder! ๐Ÿ˜€

      I know how you feel! I hate using a wheelchair in certain places and a walker. Feel like everybody is staring at me! But after suffering a few times struggling to get back to my car and not knowing if I was going to make it! I now use them and say to myself Who Cares!

      To us it’s embarrassing. But then I look at myself and then realize that I am not the only one! But you do learn lessons! I have leaned 20 years of lessons and still learning! I have had about 5 broken toes, a broken wrist, top of my foot broken all because of not using my walking devices. And that was in my own home!

      When I wake up in the mornings I have no feet! And can’t feel them so I do the quack quack waddle to the bathroom when waking up. My toes catch it everytime. They have hit tables, chairs, corner moldings and when that toe pops and breaks. That foot comes back to life really fast! Now when I wake up after this last close fall! I have started using my walking devices! Hugs!
      Have a fun vacation! You need the resting time!
      Linda H

    • Anonymous
      June 4, 2009 at 12:18 am

      Carry and use your cane with pride. There is absolutely nothing to be ashamed of because you have a disease that affects your walking ability. I want to come and give you a bonk on the head for being so stubborn . Use your cane and hold your head high.

    • Anonymous
      June 4, 2009 at 2:01 pm

      Stacey! Have a great vacation with your hubby! Doll yourself up, walk proud and give them something else to stare at! A beautiful you! Oh yeah, and if I were you, I would be dolling that cane up too! By the time I was done everyone would want one! It would become an accessory to my outfit!

    • Anonymous
      June 5, 2009 at 8:21 am

      Hi Stacey, I hope you have a lovely vacation with your husband. I actually had to sleep on the post that I was going to leave for you. I just wanted to tell you I know your frustration very well. Your cane is an important asset to you right now. You will find yourself yelling at yourself quite often with CIDP. I am also stubborn, proud and fight CIDP every step of the progression of the disorder. You seem to, as a lot of us, want to keep our independence. I found when I walked with a cane nothing could slow me down. I also have drop foot and was call egor. But it is just a name. I still was able to vacuum, dust, mop, and normal household choirs, drive, go to extracurricular activities with my children and drive over 1,000 miles a week all with a cane attached to me. But it doesn’t mean that I didn’t get frustrated sometimes because I had fallen or just couldn’t keep up with others. I finally came to the fact that I work at my pace and not their idea of what should be. Even now that I am in a wheel chair I still do things that I know will cause me to get tired, but I refuse to let CIDP win on letting me be totally not needed.
      I do hope that you finally get that if other people had this for one day that they would respect what you do and accomplish everyday. Be proud of yourself and hold your head high (even though we look at the floor when we walk) no matter what names are called in our heart we know that we are fighting and going to maintain our lives as best we can. Stay strong and always be you. Pam