back to the neuro

    • Anonymous
      September 18, 2008 at 7:31 am

      Hi all.

      I had to make an unscheduled appt with the dr. I have been having some declining and it’s time someone checked me out. At first they said it’d be mid October but after talking to the nurse, she called back fairly quickly and said the dr wants to see me asap. I appreciate that. Kinda like they care ?

      I have a great feeling that it’s all stress related…if in fact stress makes things worse. Stress is a horrible thing for healthy people.

      My hubby was in the ER monday night for chest pain. He is fine but it was a long night and I got only two hours of sleep. I’m still recovering from that.
      I’m just glad that he is ok. His stress level is incredible with all the estate stuff still dragging on. He has to have a few more tests and had the whole slew of heart tests in the hospital. I couldnt survive without him and I thank God that he is alright.

      On a brighter note, we had Connor’s bday party Saturday. All 11 boys came and it was a hit. They had so much fun and Connor was absolutley thrilled.
      And, there wasnt that much of a mess. :rolleyes:

      I was on the couch most of Sunday but it was worth it. I felt bad about being so sluggish but my wonderful hubby took care of me…made dinner and all. He told me not to worry, that he is there for me and I can always know that he is the one person I can count on.

      Look what happened…two days later, HE is in the ER. ug.

      I’ve started having pain that I dont normally have. It goes from the top of my inner thigh all the way down on one leg. And the bottom of my feet…oh ouch…if I dont have shoes on, I cant stand to walk most of the time. And then my hands ache bad and are significantly weaker. I’m actually kind of scared this time.

      While I was able to get on my tip toes a few months ago..I am not able to do that anymore. Havent been able to walk on my heels since before diagnosis and that is still impossible. I am using the cane almost all the time outside of the house and work. I cant pin point any certain one or two things that are getting worse…there are several . Definitely weakness and the flippin fatigue. How do you get thru that ! I dont have time to be resting or unable to do things like this. I realize I need down time and I can take SOME time for that but not alot…I have got to work…I am a mother and then there is the whole wife thing…well, I just exist when it comes to that.:( Is that common, too ?

      The little man and I got all the Halloween stuff out last night. Connor told me, “I LOVE Halloween, it’s my favorite time”. then he remembered Christmas is his first favorite. He hugged me and said, “feel better Mommy”. That crushes me.

      give me strength.

      today is my appt. we’ll see what happens.

      Well wishes everyone,

    • Anonymous
      September 18, 2008 at 11:03 am

      I’m keeping my fingers crossed for you today Stacey, hopefully as you say it’s just stress making things a little worse. I also know what you mean about being scared when your husband is sick. We went through something like that recently also, he is fine too but it’s scary when your rock starts to crumble. I understand what you are saying about having to work, being a mom and wife – HOWEVER, your ability to do that well depends on you being physically healthy. Therefore you will better serve your family if you better balance your body’s need to heal with your need to get things done. I’ve been there, its tough when you feel like there are a million things to do but you’ll do them better when you are rested and not stressed out.

      Keep your chin up – you are a very strong woman and I know you’ll get through this.


    • September 18, 2008 at 2:27 pm

      I know it is impossible to rest having a little one. But maybe you could compromise and beg the doc for loading doses. I am confident that more ivig would benefit you. Then you could be stronger to put up Halloween decorations. You will be ready to trick or treat. Before you know it you will be Christmas shopping!!! Call me if you like, I want to hug you and help you!!! I can’t wait to meet.
      Love and best wishes,
      Your friend Dawn Kevies mom

    • September 18, 2008 at 3:20 pm

      Stacy, May God bless you. I prayed for you (strength & encouragement), your neuro (wisdom & skills). Gotta run to a meeting. Please give us an update.


    • Anonymous
      September 18, 2008 at 4:02 pm

      Julie, Dawn and Gary…

      thank you so much for the support, confidence, and prayers.

      I was thinking today that it really is a bad day if I stay on the couch. It takes ALOT to hold me back when it comes to doing things for my son. I’ll crawl around the house if I had to…but, at the same time, I really want to be better so I know I musnt. Sometimes it isnt a matter of what I want. I simply CANT. I just want to be normal. Or back to where I was…half normal. 😮

      I cried when my little man recently showed me that he’s learned to skip . I could have never taught him that. I dont think it’s CIDP that hurts me any more…its what I’m missing b/c of it that hurts the most.

      thanks again my friends…

      I started another thread about cellcept and imuran.

      well wishes and blessings,

    • Anonymous
      September 18, 2008 at 6:25 pm

      I just wanted to let you know that you’re in my thoughts and prayers.

      I have children myself so I know how hard it can be to wish you could do certain things but be unable to because of CIDP. The one thing I want to stress to you is, you aren’t missing these things. Your son learned how to skip and you saw him do it. You didn’t physically get up and skip with him but you were there, cheering him on, as he showed you. To your son, your love, support, and attention is all that matters.

      Please don’t let CIDP cloud these moments of joy with sorrow. Don’t let it color your memories. Guaranteed, someday when your son is looking back on that moment, the biggest thing he’ll remember is simply you and your love, not your CIDP.

    • Anonymous
      September 18, 2008 at 8:36 pm


      You are so very right.

      thank you.

    • Anonymous
      September 18, 2008 at 8:53 pm


      You are so very right.

      thank you.[/QUOTE]

      *Big Hugs!* Anytime.

    • Anonymous
      September 18, 2008 at 10:39 pm

      Just another nugget of wisdom, at least from my point of view…

      I try to look at the positives rather than always dwelling on what i can’t do. CIDP has slowed me down so that now I have more time with my daughters, snuggled up and reading – and they are 13 and 15! They’ve gained so much positive perspective from my illness, some things I never could have taught them before. Yes, it stinks and you can’t do the things you want with your kids, but I try to look for those silver linings of things I do now and wouldn’t have before!

      Keep hanging in there and know you are not alone! Its amazing what a great support group this extended family is and we are all right there with ya!

      Keep Smiling!


    • Anonymous
      September 18, 2008 at 10:45 pm

      by the way Kithlyara I love the “Demylenated by not Destroyed”! line. I think I will take that on as my new motivating catch phrase! 🙂

      How’s the song go? “I get knocked down, but I get up again. Ain’t nothin gonna bring me down…”

      You go girl!


    • Anonymous
      September 18, 2008 at 10:56 pm

      Hey Stacey, big hugs and prayers are being sent to you! Hope you got some help from the neuro today. Amazing that he wanted to see you asap! Most of the family hear are waiting and waiting for appointments & are on cancellation call lists. Sometimes you just gotta let it out and vent, we are here for you. It’s hard to keep a stiff upper lip all the time. But then you get back on track and look on the sunnyside. Atleast that’s what I do…:o Take care!