4 years passed

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! 🙂 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.

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.

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

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.

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!

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

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?

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
Shirley

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!!!

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.

Shirley

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.

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.
Judy

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

Love, smitty