4 years passed

    • July 24, 2010 at 4:11 pm

      I hit my 4 year mark and I realized it had slipped my mind. I think that alone is some sort of recovery.

      I also think it is safe to assume that what I have right now is what I will have the rest of my life. I have read little to no healing happens after the 2nd year, then it was the 3rd, then I read the 4th. Whatever it is, maybe they will increase it to the 5th or 10th one of these days.

      I have also decided to accept what I am and where I am. I do not want to do this because it feels like giving up. But, it seems easier than fighting and being upset all the time. I still learn new limitations, new ways to deal with them, new lessons on not to push myself, and new things I can do. So I cant stand for long periods of time and sitting too long makes my legs ache…there are other things I can do for short periods of time that are rewarding. So lifting heavy things is not my forte (pardon the pun). I didn’t plan on being a weightlifter anyhow. So the heat zaps everything I have….I prefer winter anyhow. So I don’t cook every night, I plan for that with easy to fix meals. I guess I have learned some things to deal with my own life. I have also learned other people hurt too and I sure wish they didn’t.

      I want to thank everyone here for all the support you have given, the advice, the knowledge you have shared, and the therapy sessions you have taken an active part in. I am so glad I found this family and the riches it has provided. I am also saddened we have lost some very dear friends. I send each and everyone a hug today,a day of relief and rest, and prayers as always.


    • Anonymous
      July 25, 2010 at 12:52 am

      Lori –
      Beautifully said. I do not think you are giving up – you have grown to accept the new you. After all my back surgeries I can no longer bend, lift or twist – the only BLT I am allowed is on my plate! As you said, who cares? I can usually find a student willing to bend over to pick up what I dropped – I, too, have no desire to become a weight lifter, and I never could do the twist even when it was in style and I was a teenager! ๐Ÿ™‚ My darling mother gave me a card to carry in my wallet 36 years ago, and I still carry it today. The prayer has sustained me through far worse than GBS – and, you guessed it – I found it opening every Alanon meeting I went to. (another group of people recovering from living with a loved one with an illness). I could not have gotten through this year without it. :

      God grant me the Serenity to accept the things I can not change
      Courage to change the things I can
      And the wisdom to know the difference.

    • July 25, 2010 at 1:04 am

      I don’t think anyone really knows the exact course of this disease.
      Some get better fast and others take longer. Certain meds work for some and not for others. It’s a rare and mysterious malady. I like your positive attitude and being willing to adapt to whatever is necessary to do what you want and need to do. I will pray and hope for the best for all of us.
      Maybe someday medical research will provide us with more knowledge and there will be more alternatives to a possible cure.

    • July 25, 2010 at 1:12 pm

      Lori, ditto. I hope and pray that you will push out the recovery timeline. Gary

    • Anonymous
      July 25, 2010 at 4:55 pm

      Yeah, I agree with what you ‘guys’ said. Focusing on what you [COLOR=”DarkGreen”]can do[/COLOR] is also the way to go that I’ve chosen.

      I never thought much about timelines. Except for when ‘they’ say “well, generally speaking you’ve already lived too long to have ALS….”

      My first trouble was 36 years ago, or so. Some days I get worse. Usually when I do too much. Some days I get a little better.

      Find fun, have fun, keep on smiling. I tried the other way for 20+ years- that’s a no go. I’m all done, all used up on thinking ‘oh, poor me.’

      I went fishing today. I can’t hold the pole very long. But, we made a holder for it. I can’t bait the hook, the bait is too slippery for my limited grip strength. My wife baits it for me.

      fun, fun fun all the time.

    • Anonymous
      July 25, 2010 at 6:04 pm

      Like you, I try not to ‘count’ anniversaries for THIS any more, I only use them as milestones thru which I CELEBRATE the facts that I’m still alive and walking! [Albiet not as well as I’d like?] This time last year I went into the hospital TWICE due to possible ‘relapses’ or whatever they are/were that caused me to seriously fall twice in less than one month! Truly I’m am only just recovering from those disasters now. These are simply facts.
      What is the most frustrating part is, that before I fell? I’d been stable for several years and almost improving yearly. Slow but able to do more and more! Out the window that went w/almost 8 months of first hospital, rehab, then home and outpatient PT! Before I could walk again w/2 canes.
      I don’t like to complain often? But, I’ve learned that overcoming CIDP and multiple other issues can be done! I’ve learned lots of grace, kindess and giving from many good people here and at other resources.
      WE aren’t totally handicapped? We just look at things and how to do them differently NOW. To complain and moan doesn’t do ANYTHING! To share and learn and understand what is happening [so many docs actually or mite think?] to us is far more important in our tryng to get medically well.
      THEN there is our spirits/souls/heart! Lori it sounds like you are getting thru the losing your ‘old self’ into accepting you as you ARE! Congratulations! It’s a harder mountain for one w/CIDP to climb, simply because of CIDP!
      Don’t ever, please, stop trying to ‘push’ your envelope! Little bits at a time more each day can get you built up to actually do and be even more!
      I’d needed your sharing of strength today? You’ve given me a gift that cannot be repaid. THANK YOU!

    • Anonymous
      July 25, 2010 at 8:47 pm

      I agree, Beautifully said! Congrats on your anniversay! You’re not giving up. Sooner or later we all greive for the loss of our body & embrace our new life. Focus on the things we can do & laugh if we can on what we can’t.

      Thank you all for your prayers, you’re all in my heart & in my prayers.

      Love, smitty

    • July 27, 2010 at 9:09 pm

      Thank you all for sharing and the support!

      I celebrated by stepping outside my norm and comfort zone. I not only entered some photos in the county fair, but I also entered peanut butter cookies, a jar of dandelion syrup (tastes just like spring!), and a bead and wire decorated bud vase. I was a nervous wreck getting everything ready, and am excited to see how I do. But the whole point is not to win but to try something new (other than just entering my yearly photos).

      A friend of mine and I are going to also start an encouragement exercise/activity co op together. She knows my limits but also knows i need some encouragement and support to get back on track emotionally, and what better way but through movement and doing something just for me. I think it will be fun, challenging, and rewarding for the two of us. Won’t be running any marathons, but I am hoping to feel less depressed and more alive and confident knowing I CAN do things.

      Hugs to all and prayers all around every night!

    • Anonymous
      July 27, 2010 at 9:42 pm

      And more BRAVO’s!!!!!
      It is easy to say ‘stretch’ but far harder to do so… that’s why I suggest little steps or bits to punch out of the stifling scare bag.
      Doing is a heap better than just beating your head against some real or phantom wall.
      PLEASE! KEEP Telling us what you are doing and when you hit that ‘proverbial’ not-good wall. Others need to learn about this too. And unless it’s fresh? It is soo hard to explain!
      Keep it together, and do check out duct tape as an alternative to keeping yourself together. They’ve got great colors now, from Barney Purple to Handicap Blue, to Warning Oranges and Reds. Apply where necessary!
      You ARE GETTING THERE!…whereever ‘there’ should be! Good things from now on! Over the hump, so to speak… Hopefully it’s downhill from here?

    • Anonymous
      July 28, 2010 at 7:09 am

      One of my favorite things to do at the county fair is walk through the buildings and look at all the different things entered for judging. It is a thing of the past for me now as it has been so hot. I could still enjoy looking at things from the wheel chair but the ride itself would be too much with the heat, gravel, bumps, mud or rain. A neighbor boy has entered tomatoes this year. With his reports on the fair, your post and the news paper I will still enjoy it.
      Good luck, have fun and please post updates.
      Thank you

    • Anonymous
      July 29, 2010 at 11:42 am

      The Fair! I can stare in amazement, for a very long time at the beautiful things people have created with their hands. Somewhat, because I can no longer do the simplist little things. If you can do it, go for it!!!

    • August 1, 2010 at 1:06 am

      My daughter and I went to see the judging results on our entries at the fair.

      She got a 3rd place on one of her photos, nothing on her other one darn it.
      We forgot to check how her necklace did so we have to wait till we pick everything up.

      Out of 5 photos entered, I think only 2 got ribbons. A 2nd place and….happy dance…1st place and Grand Champion! I cried when I saw that! It was so very cool to receive such an award ๐Ÿ™‚ My dandelion syrup got 3rd, my pb cookies came in 2nd. Not a bad showing considering I usually only enter photos.

      It gave me confidence to not only try harder, but to also try other new things.

      She and I also had a really nice time just hanging out at the fair and relaxing after I just couldn’t walk any further. The concert was nice, the grass was damp and cool, and the company was terrific. Lots of laughs and fun in spite of my girl’s bit of disappointment. Next year sweetie girl, next year ๐Ÿ™‚

    • Anonymous
      August 1, 2010 at 8:55 am

      Congratulations on your ribbons!
      You tried something new with dandelion syrup, pb cookies, succeeded and had fun at the same time.
      Congratulations to your daughter, one out of three, not bad at all.


    • Anonymous
      August 1, 2010 at 6:51 pm

      Lori, not much more can be said. Very eloquent. We each can only go though each and every day thanking God that we had one more. I have said often when asked how I was feeling “I went out and the grass was under my feet, and it’s a glorious day. If the grass had been over my head I would have been facing God and that to would be a glorious day”. God bless and we will keep you and all members in our prayers.

    • Anonymous
      August 1, 2010 at 9:42 pm

      Thank you Lori, I needed to hear what you had to say more than you know
      tonight and you said everything from your heart. I have been struggling with
      acceptance of what I can do and having to realize the things I just can’t do
      anymore or do them totally different than I use to. It’s really hard and I still
      struggle with not pushing myself when I have a somewhat good day. I have
      to keep telling myself “KEEP IT SIMPLE STUPID”. Bless you Lori for your words.

    • Anonymous
      August 6, 2010 at 6:50 pm

      Congrats to you both! That’s wonderful! Wow dandelion syrup, never heard of that.

      Love, smitty