What’s going well?

Good idea for a thread.
I scratched my head and thought and thought (almost got a headache) then remembered. 2 days ago I visited a friend and she reminded me that just a short time ago she was holding my hand to help me up the steps to her porch. Now, I just walk right up!
When we were small we learned to sing “count your blessings, name them one by one”.
Amazing! I feel uplifted!
🙂 🙂 🙂

I call them baby steps. Preparing for our first vacation post GBS. two planes, a week at the ocean with my wife, daughter, son-in-law and of course granddaughter. Going next week, this is a little scary but hoping all goes well. Maybe these are giant steps
Harryb

life is full of baby steps; when we are healthy they are harder to see.

I have realized that the reason I have been sleeping 20 hours a day was because of my thyroid!!! I researched my medical records going years back including bloodwork. I noticed the change in my T3, T4 ans TSH. I took my basal temp and it came out at 94 degrees. I called my doctor, he said not to look for things that are wrong with me because if I look, I will find something wrong! I decided not to agrue. I called a friend of mine who is a physician, I told her my findings and my thoughts on treating my thyroid, she was hesitant, but said we could give it a shot. She called in a prescription for me as a favor. I started taking 25mcg’s (very low dose) of Cytomel and I feel amazing. I am awake, alert, I have enery, I feel happy. I still have the pain from the CIDP, but who cares!!!!! I’m finally living!!!!!!! I am playing with my kids and have even planned a weekend away with my husband! It feels so good to not be a houseplant!!!:p

Since this is the “going well” thread I have a list:

~I have been creating more digital art and photos. Learning as I go along and it makes me happy!

~My 16 year old completed drivers ed, an extra class in summer school, and may graduate early (although I encouraged him to stay in so he could walk…a big deal for mom!).

~Am still struggling with insomnia….two nights in a row so far…but it is when I get to let go and be creative so it isn’t a bad thing:)

~Still have pain, but am able to do more on my own around the house since sticking with the Savella. A bit of improvement but it means a whole lot to me!

~Am so glad to have this forum to visit and get info, talk to friends, and be able to vent to people who understand. AND be able to share exciting things with each other!

HUGS!!

see what I have been up to when I am feeling okay and have late nights:
[url]http://www.flickr.com/photos/imthinkingoutloud/[/url]

~

I was walking a little without my walker or cane. When we were little we sang “Amazing Grace” and by the grace of God may we all get well soon.
Pat G;)

NorthernGuitarGuy,
You can meet friends who feel what you feel. You should get to know SOAPY. You have MUSIC in common. If you haven’t met yet you can find SOAPY in CIP/CIDP under his I got some Rituxan and thread. Tell Kevin Liz sent you.

I know I already posted, but in spite of my insomnia, I was able to create this for a baptism card. The little boy’s godmother was so happy she cried. Not that I want people crying, but the appreciation is what makes me happy.
http://www.flickr.com/photos/imthinkingoutloud/4799000444/

I truly hope everyone has a beautiful and peaceful weekend.

i have alot of things going well, for the first time in 4 years things are pulling my way! and i see that and am thank full for it !

1) started a new med, lets me eat and acctualy digest my food
2) getting to eat salad, and fruit and steak again
3) getting to spend hours in the kitchen prepping food and making complicated dishes AGAIN
4) more endurance!
5) walking independently alot more, leaving the house and forgetting my wheel chair !
6) feeling like ME again
7) gaining 4 of the 40 pounds i lost when i got sick
8) going put for my first date night dinner, more then 15 min from my house
9) i cant stop smiling

Well, I was thrilled that I was able to go to breakfast with my daughter who is visiting from California. Only ate a small amount, but that Denver Omelete was soooooo much better than a yogurt! (My staple diet) I was able to swallow a little better today, and my son stopped by on his way home from a BACA ride. (Bikers Against Child Abuse) Don’t care how big they get, they are still my babies, and I LOVE to see them! Going to breakfast with my weekly group tomorrow, am determined to get out of the house a little more, regardless of my pride having to use a walker.

getting out (despite ur pride) with ur walker…. USE ur walker with pride! 😀
stand tall and know how huge an accomplishment it is to be walking ! …. i love that u love seeing ur kids…. i did lunch with my Mom yesterday and i hoope she gets half as excited to see me 😀

i had my first steak in 4 years last night GREAT fillet minion wrapped in bacon on the BBQ, jasmine rice seasoned with cardamon and star anise…. im spoiled and smiling.

OH and i got my dress for wednsday DATENIGHT:p

30 years post-MFS/GBS, residuals increasing impact and I just bought my first house after years of living in an apartment! Now all I have to do is learn how to garden!

After sorting, tossing, and packing for two weeks we are almost ready to go! The desert is getting rain and it wasn’t over 100 today! I never would have thought I could do what I am two months ago – then I was celebrating walking with my cane! Now I often have to look around for it – it is said that when you have to ask, “Has anyone seen my cane?” you don’t need it anymore. So I celebrate getting better and better. If only my feet didn’t hurt so bad – – – –

Just returned from my first post GBS vacation. Spent a week at the ocean in North Carolina and was able to do more than I thought. Went in the ocean (when it was calm), hobbled the beach, ate a couple of dozen fresh peaches, played with my granddaughter and napped every afternoon. It was a great week, Yesterday’s plane flight home was long, delayed and rough but I survived and today is a normal day back at home. This was a number of baby steps that feel like a giant leap.
Harryb

I’m getting a brand new vacuum cleaner.. I remember when I first got this crummy disease I had to sit down to run the vacuum because I didn’t have the strength or balance to stand and push it. Now I can pick it up and flip it.
The old vacuum is giving out after the record number of cat hairs it has dealt with.
The last time I checked there was such an enormous amount of cat hairs in the machine that I looked all over for the cats to make sure they hadn’t been sucked inside. The kitties were fine.

i wanted a pulled pork sandwich, didnt have any at home, so i took a walk down to the bus stop, got on the bus, down to the grocery store, and small town mall….. finally bought some shorts that fitt ! got my pulled pork and took the bus home….. all without my chair, walker, or cane…. FOR THE FIRST TIME:eek:

I finally have a new pc! Haven’t been able to reply to any posts for a long time now. Just been able to read on my phone. I also have an interview for a new job! Much less physically demanding & more money! It’ll be nice to be able to come home from work & still be able to feel my hands & feet! 🙂

I worked my first full day today. That is one major baby step for me
Harryb

I haven`t posted in a while but got back on, saw this positive thread and want to blab.
My story: Stroke, diagnosing the stroke they found a brain tumour, took out the tumour and a week later back in the hospital with some serious vomiting. They thought it was something to do with the tumour. I was on a ventilator two days before they figured it out. Told my husband and kids to say your goodbyes. First round of IVIG didn’t work but the second did (you figured that out cause you are reading this). Told my family I would be in the hospital for six to nine months. I got out in 67 days. That was exactly one year ago.
Two months out of the hospital, my mom took me on a cruise, saw the panama cannel. Very cool.
I wrote three screen plays, sold one- we go into pre-production in November. Started a novel, got an agent and they are waiting on the rest of it. Personally, I am going to go with the Joseph Heller school on this one. He had GBS, you should read his book about it. He missed the deadline for Catch-22 by four years.
I got to go downtown and see the Olympic torch; I am in Vancouver, Canada.
Next week I get to see my son play in the Canadian National Rugby tournament.
I have accomplished more in the last year than I had in my previous 50 some.
I still have `fuzzy feet`, just means that I don’t need slippers.

Go to [url]www.imsdb.com[/url] you can read all the scripts they have listed there free.

The last month or so has been fabulous. For the first time in almost 3 years I’ve been able to wean myself from pain meds….instead of taking a couple per day, I may take a couple per week.

Since I’ve been wearing an AFO, my back pain is 95% better as is my stability. Though it was tough to find cute shoes that didn’t cost an arm and leg, a friend’s daughter works for a Podiatrist. She allowed me to use her discount; two pairs of Dr. Comfort shoes for less than 1/2 the cost of one pair and they’re cute. Woo hoo!

I have a new love interest. 🙂 It’s truly a small world as my previous guy’s ex-father in law had GBS. My current guy’s ex-wife had GBS. No need for lengthy explanations about why I don’t want to go camping or climb a mountain.

Let’s see. Work has been a bear, however, I’ve had the energy to work a bit of overtime, come home and exercise, eat dinner and…..crash. I’ve lost 8 much needed pounds this month.

So yeah…..it’s been a good month. 😀

An improvement:
This spring I was tidying my bottom kitchen cupboards and couldn’t reach the back of the cupboards from my chair, so I slid down to the floor and positioned my legs tailor-fashion to tidy the cupboards. But when I tried to get up again, it was a very long and difficult process; the hips and legs wouldn’t work right, so I had to make each muscle move in stages before I could grip the counter-top and heave myself up again to a standing position.

A few days ago, I was tidying the linen closet, and had to sit down on the floor to organize the bottom area. I thought it would take a long time to get back up again, but GOOD NEWS… I was able to find more strength in my leg muscles now, and it only took me a few tries to get back on my feet. Still can’t kneel because of the swelling, lots of pain and bruising afterwards.
But a little more strength in my major leg muscles is a huge improvement for me, and I believe there’s still more of this to come. I think also that my brain is connecting better when it comes to co-ordinating these major movements.
It’s hard to explain what I mean, but I just thought I’d share.

May seem strange to be happy about this but Im finally out of the neurontin fog! I’ve been dealing with a flare up lately & gave in & started taking the neurontin again (I have a high tolerance for pain so I usually just deal). Been living in the fog the last 5 days. So nice to be able to think clearly & quit walking into walls lol!

I’m desperate to put my life in order. I no longer think in terms of ‘getting my life back’. Life is different now, but it’s still ‘my life’.
So, on with it.

Now one thing that has come to me clearly (now that my mind has cleared enough for things to be clear to it again) is this basic question:
[B]How will I spend the best part of each of my days?[/B]

For me, the best part is in the morning; in that first hour or two I have my greatest strength. So, during the past week, I’ve come up with a plan: to get up, get ready for the day, then [B]get right to what I want to do[/B], not just the essential tasks of everyday living.

This week, I have done some sewing, and now I have 1 more pair of pants to wear 😀 (my black pants now hang in the closet). I finally cut up my old dishtowels for dishcloths, so I don’t have to look at those ragged dishtowels hanging on the towel bar in the kitchen, demoralizing me with their wretchedness. Today I spent the ‘good hour’ on some mending tasks that have been piling up for the past 3 years: I fixed 2 pair of slippers, sewed 1 button on my coat, prepped the waistbands on 2 more pair of pants. I’ve been praying about my sore feet, and on Sunday I tried on 2 pairs of sneakers from the closet. I removed the thick, foam instep inserts that agonized my feet, and just wore them barefoot to break them in again. After a day, they fit better and feel pretty good, and I already have less pain in standing and walking. Today I wore 1 pair downtown to do my errands, and had less foot pain.

So if I can do some important things in my [B]’good hour'[/B], I can cope, and even pick up some of the pieces. Now this idea can also be applied to anything you want to do for fun, but in my case doing these things is ‘fun’ for me.
It gives me such a sense of satisfaction to feel some control again, instead of everything being so overwhelming and out-of-control.
Tomorrow, I want to bake bread, or sew my dishcloths & pants, or both.
We’ll see; I’m not going to pressure myself; it’s my choice and I enjoy that.
I know I’m dealing with my GBS-CIDP body, but I have things to do, and I’m going to get them done!

No bread-baking yesterday, no sewing either. Did sew 1 button on a shirt.
Noticed a thawed roast in the fridge needed roasting, so did that. Trying to stay on top of things in the fridge, so there’s no waste.

Also noticed I was out of water, so had to get some which involves lugging a couple of jugs in my hand-cart with my walking-cane (1 mile round trip).

Sugar was on sale downtown, and if I don’t get there in time, it’s all gone due to the canning season, so I went downtown with my rollator and got a 10kg bag. It fit nicely in the rollator basket, but was very hard to get home, just little baby steps in the heat (2 miles round trip). Sure was glad to get home.

One driver noticed me inching my way along, and he decided to wait for me to cross the street, when he could have easily gone to the right instead. It took me almost a minute to cross the street, and when I got across he revved up his truck engine, squealed his tires furiously and vroomed past me. Well, it’s not my fault if people are so dumb. Maybe he’ll know better next time. Looks like I’ll be ‘educating the public’ for some time to come…hee, hee.

Today I found a quicker bread recipe and hope to try that.
Well, off to the salt-mines now; have a good one, people!

I just had to share with everyone that I got the job that I interviewed for! Its going to be so much less physical than the job I’ve been doing!

Congrats, Mandi!

Another baby step… I gave up my cane today, oh boy!

I love this thread!

After a week of depression, non-stop tears and zero activity (definately not good for me), I’m feeling stronger and more emotionally stable!

Had a brain scan today, and they actually found it. That is good I guess.

Good Morning N.G.G.!
I have so appreciated your posts since you joined the forum. Make sure you keep track of them – they will become a journal of your journey. And, I really like this thread – so many times we focuse one the “pains, the what’s wrongs, the frustrations.” I am glad to have a positive thread.

Today I am off work – Labor Day! Everyone thinks I sould be doing something special with my long weekend, and I am. I am sitting here in my nighties at 9:30 am, after having coffee and pancakes on our front porch with hubby. We have a million dollar view of Tombstone Canyon, Castle Rock and Old Bisbee – noe of which means much if you’ve never been here, but google Bisbee Az on the images and you’ll see why I love this community I have recently moved to. Our porch is on the side of a mountain – I could spit on my neighbor’s roof (well, maybe hit it with a well thrown tennis ball, if so inclined)- we are very secluded while being in the middle of town.

What is going well? I am able to teach my 6th graders, and find that I am loving it! After years of teaching high school I was scared that I would not be able to transition, but the hugs, the support I get from these little folks maks me know the decision was good. (It also allowed me to move here, which was wonderful)

Hubby and I are enjoying the slower pace that a community of 7,000 brings. A 4 minute drive to work, people greeting you at the grocery, the coffee shop at the bottom of our hill that servers outragously good gluten free vegitarian pizza.

What’s good? An evening sharing a glass of wine, watching the stars, and reconnecting. Nerves that have recovered enough to enjoy the evening.

The good? My decision to focus on the good – greet the morning with a prayer of thanks, and to try to let the not so good rule my life. I am going to lick this thing – or at least not it rule my life! Thanks for reminding me to share the good – I love reading this thread! 🙂

Listened to ur song .. I think it should be our GBS theme song!

so its been awhile since iv posted kinda went a wall.. seems when things start going well i get busy and forget to keep updated on whats happening in the word of online GBS’ers

Latest news! iv started doing alot kore baking ! and alot more selling of my baking ! people ordering cakes and cupcakes carrot muffins and cookies! its taking all my energy and alot of my time but its made me feel so accomplished! every time i finish a cake and step bak and loook at it i take a deep breath and say…… wow look what u were able to do today!:eek: [IMG]http://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs883.snc4/71647_10150295755065581_504550580_15559201_2798131_n.jpg[/IMG][IMG]http://sphotos.ak.fbcdn.net/hphotos-ak-ash2/hs007.ash2/33736_10150293100955581_504550580_15496630_8159697_n.jpg[/IMG][IMG]http://sphotos.ak.fbcdn.net/hphotos-ak-ash2/hs148.ash2/40756_10150284275715581_504550580_15336113_3862900_n.jpg[/IMG]

Getting ready to watch a little football today but before it started i managed to get out and do an 800ft walk (with walker). With no rests that is my personal best so far.

overall feeling pretty good!!

“Faith means taking one step at a time… even though you can’t feel your feet”- Donna LaPan

And that was exactly how it started. However, there wasn’t much of any feeling below my waist at all. But I have continued with faith, determination, and perserverence. I am now walking over 100 ft. (with afo’s) and a walker ; or holding on to my husband’s arm—–despite the fact that I was told at Mayo Clinic that I would not walk again.

“Faith means taking one step at a time… even though you can’t feel your feet”- Donna LaPan

And that was exactly how it started. However, there wasn’t much of any feeling below my waist at all. But I have continued with faith, determination, and perserverence. I am now walking over 100 ft. (with afo’s) and a walker ; or holding on to my husband’s arm—–despite the fact that I was told at Mayo Clinic that I would not walk again.

Last week I had a chance to escape the west coast gloomy rain and go to Clearwater Florida. I had to twist my fourteen year olds rubber arm to come with me; after all he would have to miss school.
Sunshine, beach, all good. Then we realized we were only a couple of hours from Disneyworld. Can`t be that close without going, so we drove over. We had the day we drove there, the next, then we had to get back.
Having done the Disneyland we knew what rides we wanted to go on, but in the Florida park they are spread over the four different theme parks. Because my residual is a serious case of numb feet, we had to plan our excursion carefully. We did the rides during the parades so we got to walk right on. I was having so much fun that I guess the chemicals in your brain that make you feel good were really working because I had no problem with my feet. We managed to do something in each of the five theme parks in two days. It was all good till we got on the plane.
My feet puffed up like a well baked soufflé. Thank goodness I wear these foamy soled slip on flip flops ALL THE TIME.
After almost seven hours in an airplane I managed to stumble through security and customs. When my feet are bad I can`t judge the whole lifting up your own feet thing and tend to stumble a lot. I was surprised that I wasn’t given a breathalyser test in the airport.
Made it home on Saturday, couldn’t do much on Sunday. Monday I woke up very ill. It was exactly like when I was hit with this stupid GBS. Scared the dodo out of me. My family wanted me to go to the hospital right away, but that is where I caught the virus the triggered my GBS and I tend to avoid that place. So I hung in for two days and slowly got better. My feet still hurt. I am not going to do anything about the runs until I lose twenty pounds.
It have to go to Vegas, maybe I should plan to not walk the strip too much.

I watched my 3 year old grandson last week-end. He helped me decorate my
my Christmas Tree!! Later he cuddled up on my lap and he took a long nap
just snuggled up against me in my chair. What a joy! What a Blessing!

Miss Judy

The Twin Cities here in MN is getting a foot of snow, but we live 200 miles north in the Arrowhead region of MN & the band is missing us. Don’t get me wrong, I love the snow, but we already have a couple feet! I would be asking hubby to go sledding, but my son has our 2-up snowmobile up at the hunting shack until tomorrow, as he is black powder deer hunting. Even our 4-wheeler wouldn’t have made it into the shack this time. Heading to town to visit my husband’s aunt…

Hmmm….what’s going well? Too many things to list. Though I was recently dealt with a few personal blows, (won’t list them as this is a positive post) my faith prevailed. I’m very thankful for having a wonderful group of friends.

Things were shaky on Monday, but by Tuesday, my faith that God will never put more on me than I can bear started kicking in. By Tuesday afternoon, I was back to my old silly, joke crackin’ self. 😀

Hope things are going well for others. 🙂

Take care,

Tina

I have a “going well”! I just got word that a photo of mine that recently won a contest will be published in a book (not one of those ‘if you buy the overpriced book we will make sure your info is in it) and I am up for Photographer of the Year and Image of the Year for 2010! The book will be sent to the contests sponsors and other photography people, and the exposure will be very cool! Winning the big prize would be way awesome but just to be included is exciting. I will find out more in the next week or so. Am crossing my fingers and doing a happy dance LOL!
Have some digital artwork that is getting a lot of attention as well. Encourages me to try harder and come up with more ideas. Hard to sit very long to complete them all at once sometimes unless they come together quickly, but I enjoy the process and the ability to express myself.
Thanks for letting me share. Hobbies are nice to have.

[QUOTE=fairly_odd_mother]I have a “going well”! I just got word that a photo of mine that recently won a contest will be published in a book (not one of those ‘if you buy the overpriced book we will make sure your info is in it) and I am up for Photographer of the Year and Image of the Year for 2010! The book will be sent to the contests sponsors and other photography people, and the exposure will be very cool! Winning the big prize would be way awesome but just to be included is exciting. I will find out more in the next week or so. Am crossing my fingers and doing a happy dance LOL!
Have some digital artwork that is getting a lot of attention as well. Encourages me to try harder and come up with more ideas. Hard to sit very long to complete them all at once sometimes unless they come together quickly, but I enjoy the process and the ability to express myself.
Thanks for letting me share. Hobbies are nice to have.[/QUOTE]
Thanks for sharing your pictures, I enjoyed looking at them.

FOM,

Beautiful pictures, enjoyed each one.

Thanks for sharing
Shirley

I am 18 months into GBS, and my doctors are even amazed at my recovery. One of them had originally asked me if I was prepared to be in a wheelchair the rest of my life… I used my walker to walk right into an appointment with him yesterday! 😀 He thinks my positive attitude has much to do with my recovery.

4 people at the pool commented on the progress I have made even within the past two months! It’s so easy to get caught up in the day-to-day – not seeing huge leaps in a short period of time. 3 months ago, I couldn’t even do basic bathroom skills – my mom had to be here full-time. Today, I do all of my self-care on MY OWN!

Over Christmas break, I have prepared simple meals for myself and my kids, being alone with them for bigger and bigger chunks of the day. It’s a good exhausted that I feel at the end of the day.

Thanks for the opportunity to see what is right with everyone! My blessings are counted every day, and now I don’t take one thing for granted!

That’s a good looking family you’ve got there, northern. Best wishes to you in 2011.

I’ve been hesitant to write what’s going well for me because, health wise, I can’t imagine things going better. I certainly don’t apologize for it but I just don’t want to give anyone false hope because I strongly believe that I’m not supposed to be feeling this good.

One year ago today, I was in a nursing home essentially waiting to die. Today, I’m in the best of of my life since the turn of the century. That’s about as dramatic of a change as it gets. Mind you, I was still using a walker to get around at the end of April.

My CIDP has been in full remission for some time now and I really worked my ass off to get back to 100% of what I was before my illness.

On top of that, I’ve lost 102 lbs since July and I’m working out 5 days a week at the gym. I’m spending at least 10 hrs a week there and I love it.

So, in essence, I accomplished TWO impossible tasks in 2010 that nobody thought was possible – getting back to 100% from CIDP and dropping 100 lbs.

Proving the naysayers wrong, including my own neurologist, is what drives me to continue to work my ass off everyday. I really do feel 10 years younger.

I hope 2011 goes as well for everyone here as the last half of 2010 went for me.

I can’t believe it…

This afternoon, I was standing in 2-minute bursts to do the dishes when I needed something from the other end of the counter…

I let go, and walked there ON MY OWN!

I can’t even believe it, so I keep testing myself… And, I can even TURN and walk in the other direction without holding onto anything!

Praise God! What a way to bring in the new year!!! 😀

It’s amazing how those moments of success can surprise us. Thank you for sharing and let’s all be grateful as we celebrate the New Year! Think of what the next year might bring.!

WOW GG your doing great. Today, I was thinking spring and I shoveled the foot and half of snow off the back patio and dug out the grill. It a warm day up to 26F and I’m thinking some grilling and a beer tonight. Want to come down and join me. Should be only a 16 hour ride for you. I can put it off till tomorrow if that would be better for you.

its been awhile but im checking in ! iv been doing amazing and my baking buisness is taking off like gang busters ! christmas was su[per busy with lots of orders for cookies and cakes. had to turn some people away because i just didnt have the energy. im excited to keep doing birthday cakes and other things threw out the year, got my logo printed off and im all set ill attach a pic of some if my latest stuff !

Iv also taken up knitting to helop work on getting my fine motor skills bak, ben trying to teach myself after watching acouple you tube videos…. ill attach a pic of my latest attempts, a set of farm animals for my friend whos having her first baby![IMG]http://a4.sphotos.ak.fbcdn.net/hphotos-ak-snc6/hs014.snc6/166446_10150378965530581_504550580_16989699_2642835_n.jpg[/IMG][IMG]http://a7.sphotos.ak.fbcdn.net/hphotos-ak-ash1/hs732.ash1/162614_10150330350935581_504550580_16093249_1859758_n.jpg[/IMG][IMG]http://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs791.snc4/67134_10150338891050581_504550580_16227037_4420538_n.jpg[/IMG][IMG]http://sphotos.ak.fbcdn.net/hphotos-ak-ash1/hs745.ash1/163770_10150373188575581_504550580_16904464_6432752_n.jpg[/IMG]

It’s been just about 4 months since GBS dx and some good things have happend in the last week or so.

1) Today I walked 8 laps (1 mile) at the rec center. Took a couple breaks but made it
2) Able to get up from the Floor w/out holding on to anything
3) Put on Jeans for the 1st time in 120 days (still can’t do buttons though)

Seems like the hands are trailing everything else but starting to show a LITTLE progress.

@ Synthia beautiful cookies and cakes!

@ Kevin congrats on your mile

@ the others….I am glad to read positive things! Hope it continues!

We got a couple of very very last minute opportunities and have work to look forward to *yeehaw!!!*, counseling seems to be opening things up for me (changes are hard and facing yourself is painful), things just seem to be okay right now. Which is a far cry from the “where the heck is the bright side to this?!” we were going through. Plus hubby and I will be working on a project together that has been a long time in the works. I am very excited about it and can’t wait to see it finally come to life!

I pray everyone continues to have hope or at least find it along the way, to see a bright side, know that tomorrow may be better than today and if not there is always the next day to look forward to, and healing emotionally, mentally and physically.

HUGS all around

[QUOTE=Allsmiles]I can’t believe it…

This afternoon, I was standing in 2-minute bursts to do the dishes when I needed something from the other end of the counter…

I let go, and walked there ON MY OWN!

I can’t even believe it, so I keep testing myself… And, I can even TURN and walk in the other direction without holding onto anything!

Praise God! What a way to bring in the new year!!! :D[/QUOTE]

Wonderful news!!! Keep it up! I am so happy for you!!

I go to the gym. I’m no weight trainer, but it’s working for me. I trying to re-build my muscle strength. I love to swim. It’s a feeling of weight lessness. I can move around in the water and it doesn’t hurt. I use the hottub. and even the steamroom(just a couple of mins.) It’s the best. life is good!!!!!!!!! 🙂

My wife and I built our home after I was released from re-hab, in 2008 and 2009. We moved in, late in 2009.

Just made it through a fairly severe winter storm. I was really, really greatful that everything worked and worked well.

I’m also a pretty avid rabbit hunter – really, REALLY enjoy having the dogs run. I have two beagles that I’ve raised since pups. Watching them run this past weekend through the deep snow was really great. No rabbits in the pouch, but a great time out all the same.

Brett, great hearing your story. Catch one of those wascully wabbits for me. Glad you were dry and warm for the winter storm,

Originally Posted by Allsmiles
I can’t believe it…

This afternoon, I was standing in 2-minute bursts to do the dishes when I needed something from the other end of the counter…

I let go, and walked there ON MY OWN!

I can’t even believe it, so I keep testing myself… And, I can even TURN and walk in the other direction without holding onto anything!

Praise God! What a way to bring in the new year!!!

AMAZING! congrats, it’s such a full filling feeling the first time u do that on ur own. i remember the first time i lifted my arms again when i was in hospital after about a month of no movement, was sooooo exhilarating. Congrats

[FONT=”Microsoft Sans Serif”]chris–

glad you have a fun project!

what’s going well?
work.

nice to back to life 😉

hope you’re healing friend–
alice[/FONT]

I was able to bow hunt In 2010, last few years i couldnt pull back my bow, I’m down to 1 ivig treatment per month and down to 80grams per infussion. I ‘m also able to jog, but still cant run. I havnt taken any pills since jan 2010.
I Pray everday for all of us…Kyle

my wife and I just drove 900 miles to Virginia Iwas able to drive a three hour portion on both days./ Anyway the reason for the trip was the birth of a grandson. I am tired but happy

Well we drove to Virginia from Wisconsin. A new grandson Henry was born and Mary Beth and I are on babysitting duty for Lydia who ia three. The weather here is most excellent. today I washed the car and took a nap

[QUOTE=northernguitarguy]

However, my head is not in here:
[IMG]http://www.treehugger.com/oven%20door%20open.jpg[/IMG]

I suppose that is to be celebrated!!

:)[/QUOTE]

Um, yeah. No heads in the oven. It’s reserved for turkeys and you’re not a turkey!!! 😀

It’s been a while since I’ve posted on this thread; however, things have been great. I rarely have to take pain meds. This time last year, I was taking at least 3-4 pain meds daily. I’m now taking perhaps 2 pain pills per week.

I’ve increased my exercise tremendously and am eating better and it’s showing on the scale and with my clothes (woooooo). Work is stressful, but I thank God for a job, especially with Michigan’s economy. Spring is here (well, at least that’s what the calendar said). I’m looking forward to a bumper crop year of good things.

Hope everyone has a great day!!

Take care,

Tina

wow that looks like its coming along nice ! will be awesome when its done and u get to play the first couple notes!

as for me.. things are still going strong my baking is slowly coming along finally registered my domain last week and am finalizing the business card design! yay !

had a doc appointment in London (ontario) about a 3 hour drive from me.
so the boyfriend took the day off work and we drove up the night before stayed in a cheep hotel and made a fun time of it ! best of a not so fun situation.

even did some bed surfing [IMG]http://www.facebook.com/?ref=home#!/photo.php?fbid=10150443685990581&set=t.504550580&theater[/IMG]

I touched my daughters hands last night and for the first time in years I can say they were actually warm.. Made me feel good. 🙂

Warm hands, warm heart, warm feelings. Life is good.

What is going well? This thread is clearly going extremely well. Thanks northern guitar man!

I am very happy that my son has been accepted into many great universities after doing so well in the International School in Kenya. His freshman year of high school was certainly challenging (2007) since that is when I came down with GBS and eventually had to leave Kenya with my wife to South Africa for treatment. I was so proud of the way he handled being apart from us for many months and how he helped me when he did visit and after I returned to Kenya.

Anyway, since his parents are American and Canadian he has applied to universities in both countries and it looks like he is leaning towards attending the University of Toronto. If he does, I may get a chance to talk to or meet some of you that are from near there (my wife is from Winnipeg, but we don’t make it to Ontario very often except for the spectacular Lake of the Woods area).

Spring is arriving to Wisconsin. To all our friends in warmer climates you say what’s the big deal. Spring’s arrival here is a major high point of the year. The birds return, (this week sandhill in the back yard, a hugh flock of cedar waxwings sitting in my tree) and green oh, glorious green returns, as grass sheds the brown tones of winter and buds emerge in the garden. My yearly battle with the chipmuck resumes (I never win that one) and I get to spend a few hours per day in the garden.
It is really looking like I will not be returning to gainful employment, that is sad and life changing. Fatigue and numbness are not decreasing at this time. I started using my cane again but can walk for 30 to 35 minutes per day. I can spend and hour in the gardens in the morning, keep the house clean and cook the meals. Rest still important. Life is changing, but life is good and I’m OK. If someone will tell me how to post pictures I will show the signs of spring; or you can visit me on my facebook account and see my yard pictures. You may need to friend request but I know we are all friends here. If you search papaharry I should pop up. Have a good week, get strong and do as much as you can
Harryb

follow up to my spring arriving in Wisconsin. An attempt at a couple of pictures
[IMG]http://i1181.photobucket.com/albums/x422/daddio208/029.jpg[/IMG]

[IMG]http://i1181.photobucket.com/albums/x422/daddio208/002.jpg[/IMG]

How do I make them smaller

Beautiful!

Lot of work with great results.

Shirley

I was really thinking this might be the year to say forget it with everything that has happened the last 6 months but decided against it. It took a little longer than normal but I got about 6 tomato plants, 4 Green Peppers, 4 Jalapenos. Gonna put some cukes in this weekend. Should be past the last frost so we’ll see how it goes.

Morning Kevin, A garden….we have about a 6 weeks before we can put in a garden here in Wisconsin. But, I too am looking forward to get my hand into the earth. It sounds like you are doing well, enjoy your spring. I put out my hummingbird and oreole feeders yesterday and hope that they show up soon. we are flying to Virginia for Easter weekend leaving tomorrow, it will be a long day but I think I am up for it. Visiting my daughter’s family and will be playing with the grandkids. I’m sure I need a few longer rest periods next week when we get back…but it will all be worth it. Added benefit it will be true spring in Virginia.

Back from a long weekend in Virginia with daughter’s family. What a trip. Very tired after driving, flying, visiting. It will take a few days to get back into my routine. Today will be a rest day. Oh, and by the way my grand daughter (3years old) was kind enought to give me her cold. This may sound like a complaint but I am telling you all it was worth every minute and I survived.

Had a break from the rain and was able to get behind the lawn mower for the 1st time in 8 months. It took me 2 sessions to finish the lawn but it’s done!!! Also got the bike down and went on a ride with my daughter tonight. Balance is not so great but no major problems…again another 1st.

I’ll share some Pic’s with you guys when they really start growing.

Take care all

cutting the grass, riding a bike, doing things with family; it’s the little things that were considered chores or simple leasures that make use feel good about our capabilities today. I’m not working anymore but feel very good about myself for keeping the house clean, doing laundry, cooking, gardening and getting a daily walk. It takes me sessions as you stated but I can get them done and that makes me feel useful and proud. Keep up the progress and keep us all posted. It is great to hear success, confidence, and enjoyment of life.

I’ll get together anytime with any or all of us and cry in our beer together. One year coming up, that is a hard one, but wait…. here it comes…..just think how much better you are today then you were just under a year ago. You may never have built that guitar

It’s important all of us keep sharing the positives. Some amazing stories here and even though it is so slow it helps me keep grounded that things get better with time and hard work. You guys have been a great inspiration thaat keeps me going when things get tough.

A beer any time!!

Went to the movies yesterday, saw “Water for elephants” read the book and enjoyed the movie. Went to a 10AM showing so as not to mess up my rest periods too much. Enjoying spring, first spring that I wasn’t working since 1978.

Kudos to nothernguitarguy for creating this thread way back when. It’s good to read other fellow GBS/CIDP sufferers overcome such obstacles we have to deal with every single day.

May has been an excellent month for me thus far because I’ve hit a couple of huge milestones.

First off, I vowed back in Aug of 2010 that I was going to work as hard as I could to get into the best shape possible because I’ll be damned if I’m going to go through such an agonizing ordeal living in a hospital and nursing home for nearly six months as I did from October of 2009 to March of 2010 when I was first [mis]diagnosed with GBS and later changed to CIDP after nearly dying from this terrible condition.

I’ve made good on that promise to myself because I started this journey weighing in at a robust (and quite embarrassing) 418 lbs. This past week, I weighed in at 265 lbs for a total weight loss of 153 lbs to date. By no means am I done yet because I feel too good to slow down. My ultimate goal is to lose 200 lbs and get my weight down to 218 lbs, which I believe will happen sometime in October.

Two weeks ago, I added running to my workout routine to get outside more and enjoy the summer weather. I hadn’t really done any running since high school playing football and baseball but I had never really tried to run for distance.

So the first day I began running, I ran a half-mile without stopping for the first time in my life. The next day, I decided to run 1 mile and felt so good that I continued on and instead ran 2 miles. The next day, I ran 3 miles. I was shocked that I was able to run for that kind of distance so quickly.

Coincidentally, the local YMCA (at which I’m a member) was sponsoring their annual 5K race this past weekend and so I decided to run it. My time wasn’t going to make anyone forget Carl Lewis (I finished 43rd in my weight class of 190+ lbs out of 90 participants), but to think that I was able to finish respectively in a 5K race just two weeks after starting to run is something I wouldn’t have dreamed I could do just 8 months ago. My self-esteem these days is through the roof.

I’m going on vacation at the end of the month to visit my best friend whom I’ve known for 25 years. I’ve been planning this trip for 6 months and I’m really psyched about it. I haven’t seen him in a few years so he has no idea how I look now. I can’t wait.

Emitch that is awesome, and you should be proud of yourself!! Have a great vacation and keep us updated on your progress.

As for me I got the garden planted and just finished my first round of cleaning out the weeds…OHHH what good OT that was:) . Thats the not so fun part of gardening that I forgot

EMitch, that’s awesome!! I’ve incorporated some of the advice you’ve shared and I’ve gotten back on track. I haven’t been this weight in over 3 years and it’s a blessing both physically and mentally. Still pushing to get back to my pre-GBS weight. 😀

[QUOTE=northernguitarguy]Harry, you are just too damned positive!:)

It’s nice to hear. I was on a bummer today thinking about my upcoming one-year GBS anniversary. But you are right, you gotta just get out there and giv’er.[/QUOTE]

Hey Northernguitarguy,

I think the first year anniversary is probably the hardest. I kept expecting this miraculous recovery (which can occur) and doing everything possible to hasten this miracle. However, when you reflect on the past year and see how far you’ve come, it can really give you a boost and much needed encouragement to keep pushing.

Prior to GBS I was ticklish almost everywhere. Well, during my 3 month stint in the hospital and rehabilitation facility, my loss of sensation was pretty severe. With the exception of nerve pain, I couldn’t feel much of anything, including my daily heparin shot. One day, the nurse was giving my daily or twice daily shot and I said “Ouch!! Did you use a jagged needle?” She showed me the needle and it was normal. Later that day while helping me get dressed, a nurse’s assistant touched my side or stomach and I started giggling. The ticklishness that I hadn’t realize left had returned. I was so happy I started calling everyone.

So yeah, silly story but still it gave me hope that normal or close to normal sensations were returning and my body was healing. The simple things in life that I took for granted have become very precious. Every step, every success, regardless of how minor is a milestone.

Alrighty, must return to work before I get the boot. That’s certainly something I don’t need.

Hope everyone has a great day!!

I’m just commenting on the weather…. It’s very sunny over here and warm (finally). yahoo. really now… it does lift my spirits.:)

NGG,

Watched the video post more! Good to see you are doing what you love. Keep after it!!

Lots of stress taken away today. Long term disability has been approved.

Harry I am glad to hear this for you. You’ve worked hard but I am sure that takes a weight off your shoulders.

Take Care

Did my1st traveling for work in 8 months week long trip but all went well. It’s been the 1st time in a long time that I left the comforts of home. This time it was for 5 days. A bit unerving but it was a big step and a confidence boost.

Not a big step but a GIANT STEP. 5 days on your own at a work pace. Good for you. You deserve a nap or two.

It was John Lennon who said “Life is what happens to you while you’re busy making other plans”. GBS has a way of interrupting our plans……and many of us like you NGG, are trying to work back to our formal lives, albeit at a snail’s pace.

I have recently had a breakthrough after 2 years……my constant friend, the squishy and numb feet that feel like walking on bags filled with sand or a little like walking on bean bags have started to improve. I can now walk barefoot on tile and hardwood floors without the terrible discomfort. Earlier today I walked in the grass barefooted ….how cool that felt!

NGG…….it’s great to hear about your progress……keep on rockin’:D

NGG,

You have a way of making me giggle at work, thank you! It’s been pretty stressful here (layoffs and furloughs and fear, oh my), so any stress relief is a blessing.

No complaints and only good things happening for me both physically and mentally. Though it’s very sad that friends and co-workers are being laid off. 🙁

I’m thankful that you started this thread as it’s very encouraging to read the good things happening for those who have had to endure the pain, residuals, issues that CIDP/GBS has caused.

Have an awesome day!!!

Got your Tom Petty song stuck in my mind and I am enjoying it 😀

Things may not be perfect but it’s important to share and keep the positive posts going. It’s been 9 months for me and still a wys to go but along way from where I was at. Thnk im gonna get the boat out of the garage and on the water for the 1st time in 9 months this weekend.

Just gotta get the motivation up:)

Got off my butt and took the boat out with my wife today. We are going on vacation and wanted to make sure everything was still OK. Launching and putting it banck on the trailer was a little different than before but no big problems. I could have done it solo but it was really cool for my wife and I to get out and run up and down the lake for an hour and a half or so. It’s something we have done for along time and really cool to get back to some sort of normal.

Next week hoping to do some fishing 9 months post GBS. Even those small ones are going to be really special.

I need to figure how to post some pictures

Since the subject is fishing I will post a recent picture. I love to fish from my kayak and caught this Halibut on 7/1/11, six months 3 days after GBS.

[IMG]http://i384.photobucket.com/albums/oo287/MVC1955/2011halibut005.jpg[/IMG]

MVC

That is an awesome fish. Not sure my biceps are up handling a brute like that. I am going to Kentucky lake next nweek for a long overdue vacation. Last week I tried some casting and I am pretty good with spinning tackle although using a baitcast reel is stilll pretty rough with weak wrists and all. Even so I am going to make sure I get out more than a few times.

If you don’t hear from me you will know I hooked a big catfish and he won the battle and pulled me down the river:D

Did an Oil change on the car for the 1st time in a year. May sound pety but it was kind of a big deal for me. It was 6 months before I could button my pants so it;s kind of good to be getting back to some what normal tasks that I used to do. It took me about an hour or so with some setbacks but we I got it done.

Just hope my GBS hands tightened Oil Pan and filter good enough.:)

[IMG]http://www.facebook.com/media/set/?set=a.1143309842503.18293.1820208547&type=1[/IMG]

NGG,

Good to hear you are getting back to work and I think a slow return to normal is a great plan. You are uin education correct?

My advice….

1. Have a ramp up plan documented for yourself
2. Be realistic and try to stick to it
3. Get plenty of rest and make it a priority

I started back at 5hrs a day back in Feb and slowly ramped up to a 40 hr week by early April. My employer was really good about it and if I chose to work from home for a day they were OK with it but still it was tough. I probably went aback a little too soon If I really step back and look at it. But it is what it is and I did what I thought was best at the time. Most of all it helped restore some sort of normal. You will find that most people will do everything they can to support you and they may not nessesarly be the ones you expect it from.

When you throw this work thing back into the mix it adds a whole lot to the level of stress you place on yourself. Stuff you used to deal with routinely may seem like the end lof the world but with time you will be back to your old self at work only better and wiser after your GBS journey.

I was diagnosed with GBS 3 weeks ago today. I feel very fortunate because it was diagnosed just 2 days after waking up with pins and needles in my feet. Spent a week in ICU/hospital getting ivig treatment for 5 days. Unfortunately on day 5 my face paralysis began to set in. I did get to go home and have been attempting to recover at home since then. I just recently decided to reach out to others online who understand what I am going through. I have always been a very positive person which has drawn me to this forum. I am thankful that everyday I am gaining more movement in my face. I am grateful for my new temperpedic pillow that cost me an arm and a leg but is actually comfortable for “most” of the night:) I am thankful that I have been able to be at home the past couple of weeks to see my beautiful, darling 15 month old daughter grow up even if I can’t hold her (although she just learned how to blow me kisses and it melts my heart!) I am so thankful to have an appetite and a wonderful hubby who loves to cook. I am thankful to have found you, whoever you are that is reading this to share this with. I had never even heard of GBS a month ago and now my life will never be the same because of it. I think about the things I used to take for granted and it is almost comical. I found out yesterday that I am probably going to be admitted to inpatient rehab but I have decided that if that is what I need, I am ready to go even knowing how hard it will be to be away from my baby but I am a fighter and I will beat this.

Hey NGG,

Going back to work is great news. As others have said, try not to overdo it. I want to add, don’t feel the need to “prove” anything to anyone. If you’re tired or need to rest, just do it; you know, within the parameters of your position~don’t want you to get fired and say “Tina told me to take a nap”. 😀

Take care!

[QUOTE=WV-Lindsay]I was diagnosed with GBS 3 weeks ago today. I feel very fortunate because it was diagnosed just 2 days after waking up with pins and needles in my feet. Spent a week in ICU/hospital getting ivig treatment for 5 days. Unfortunately on day 5 my face paralysis began to set in. I did get to go home and have been attempting to recover at home since then. I just recently decided to reach out to others online who understand what I am going through. I have always been a very positive person which has drawn me to this forum. I am thankful that everyday I am gaining more movement in my face. I am grateful for my new temperpedic pillow that cost me an arm and a leg but is actually comfortable for “most” of the night:) I am thankful that I have been able to be at home the past couple of weeks to see my beautiful, darling 15 month old daughter grow up even if I can’t hold her (although she just learned how to blow me kisses and it melts my heart!) I am so thankful to have an appetite and a wonderful hubby who loves to cook. I am thankful to have found you, whoever you are that is reading this to share this with. I had never even heard of GBS a month ago and now my life will never be the same because of it. I think about the things I used to take for granted and it is almost comical. I found out yesterday that I am probably going to be admitted to inpatient rehab but I have decided that if that is what I need, I am ready to go even knowing how hard it will be to be away from my baby but I am a fighter and I will beat this.[/QUOTE]
You WILL beat this. It takes time but they are many people here that will support you on your road to recovery. Take care

I’m really interested to hear if anyone has been successful in bringing about a successful case for misdiagnosis or malpractise concerning GBS?

Hi All,
This is my first post. I was diagnosed with GBS in February 2011. Fortunately I was diagnosed quickly while in the ER. They started IVIG within 16 hours of initial hospital visit. My symptoms started with my hands going numb and felt heavy. By the next morning I could not tell where I was placing my feet and had lost most of my balance. By that evening I found out I could not swallow and choked on dinner. My breathing never faltered and I was able to avoid the ventilator.
I was able to tolerate the IVIG with massive quantities of Benadryl. Within 24 hours of receiving my first bag of IVIG I could feel the effects of the GBS was slowing. After the second IVIG treatment I was transfered to a rehab center. At this time I was unable to walk and had little control of my arms. I was on a liquid / pureed diet that consisted of the worst food I have ever tasted (not sure it was the food or my taste was all wacked). Within in 3 days I was getting worse and returned to the hospital for the third and fourth round of treatment. After the third and fourth treatment of IVIG I really felt things were on the mends. I was transferred to a convalescence center for minor rehab and strength building for 7 days. Once my strength was up I was transferred to a rehab center. Within 5 days of rehab I was able to return home with forearm crutches and a walker. I spent the next two weeks in outpatient rehab with great success.
I was officially released back to work in April part time (Neurologist thought I was nuts). My work was very accommodating and helpful with this transition. I started working two half days a week and slowly increased to five half days per week in a month. After increasing to five half days I started to increase more hours as tolerated. Over the last two months I have been able to return full time. I still have bad days and have learned that if you wake up feeling like it’s not going to be a good day than stay home and rest. By the end of the week I am tired and need at least one day to recover. I still have tingling in all of my limbs, but much less. My face goes numb along with my tongue. My endurance is very low. Overall I feel very fortunate and thankful that my case was minor compared to others.
The best advice I can give you is make sure to surround yourself with good friends, great family and learn as much as you can about this horrible disease. When you are tired, REST! DO NOT OVER DO IT! Stay Positive!

Daren

I’m new to GBS I’ve only had it a week… Spent 7 days in the ICU 5 of which I received an IVIG… been out only 3 days…10days with GBS altogether … I must have a had a mild case… only had numb/tingles in my hands and feet plus my eyes were droopy….I started to feel better within 2 days of the IVIG… I feel very lucky!! The only issues I had at discharge from the hospital were a slight numb/tingle in the very tips of my fingers and toes… Otherwise I feel perfectly fine… So I went with a friend to the beach in the evening yesterday. I sat just watching as he surfed. I was digging my toes into the sand enjoying the stimulation, breathing deeply the salty sea air, and just enjoying being out after being confined to practically bed rest for 8 days. By the time I got home from the beach I realized I could feel the tips of my toes and I truly feel it is from digging them in the sand. I think the beach is a great way to get rehabilitation! :rolleyes:

though it may not be apparent, I AM getting stronger every day…..

Yesterday I walked all day without my AFO while in the house. Still using the walker. Now my ankles feel stiff this am, but wait…..I can feel stiffness and not just numbness. I look at that as a good sign. Spent some quality time with the wife. Outpatient PT going well but going to take time. Post GBS 10 weeks.

Yesterday I walked all day without my AFO while in the house. Still using the walker. Now my ankles feel stiff this am, but wait…..I can feel stiffness and not just numbness. I look at that as a good sign. Spent some quality time with the wife. Outpatient PT going well but going to take time. Post GBS 11 weeks

I love this topic. Anyone else?

Been awhile since I posted here. Now starting my third year of recovery. Been walking a mile 5 days per week. Can do more but it triggers fatigue. Happy with my “new normal” which changes often. And give it time NGG you’ll make somebody unhappy. How’s it going are you back to teaching.

I was hit with GBS in May of 2010. A year ago I was still in the hospital and in a wheelchair. Weak as a kitten, which was hard to take as I originally was pretty strong physically. I had spent near 20 yrs climbing and maintaining cell towers. Been working hard on getting at least some of that strength back. I always did all my vehicle service. Got to where I didn’t typically need an oil filter wrench to loosen the filter as I had really good hand and arm strength (from climbing). I even inadvertently broke a man’s hand once during a handshake. Of course GBS changed all that in so many ways that most of you can identify with. For a long time I couldn’t open a soft drink bottle or even unzip a ziplock baggie! Asking your 7 yr old grandson to open a Coke for his ‘ol Grandpa is sobering. As I said I’ve been working on stuff as much as I have energy to do so. It’s amazing and more than a little disheartening as how quickly I run out of energy. But I’ve gone back to doing my servicing and so on. Changed the oil and filter on my old Chevy truck yesterday and I was able to twist off the filter by hand. I couldn’t really feel it very well but I got a good hold of it and gave it all I had. All I had was just enough. Yesterday was a good day.

Hey NGG………….glad to see you’re still at it………….not backing down…………that’s the way I’ve approached my recovery……doing 10 mile runs now, something I didn’t think I’d ever be able to do again…….gotta stay positive…….keep on rockin’ in Canada!!!!!!

Hello – All!
I was having what I call a “GBS Day” and thought I’d just look in on this wonderful forum to see if anyone I knew was still here – and sure enough, you are! Some of you may remember me – I am 2 1/2 years into this life, having been diagnosed December 25, 2009 (yup – what a Christmas gift). I was so active on the forum for about 8 months, then moved and started a new teaching job – 7th and 8th grade Science – and have been overwhelmed since then. So, what is going good? I am able to work, although I question the wisdom of that daily, my husband and I bought a 110 year old historic home in our new community, my son has been to Afghanistan twice with the Marines and just returned 2 weeks ago, I have a new puppy from the pound who makes me laugh and play with her, and my health has been stable. My GBS hasn’t changed much since I last touched base with you all – I can walk unassisted most days, my energy level is low, but I can teach (we have a 4 day week which saves me), I am slowly repainting my home in appropriate colors, and my wonderful supportive husband is still my greatest encourager and coach. I am glad for summer break so I can sit on my front porch and watch the songbirds come to our feeders – and I celebrate each new feathered friend who finds us. More is going well than not – and yes, Harryb, I am still celebrating baby steps – although there seem to be fewer these days, as I think I am about at my “New Normal”. But it is good to be back, to see the new format, to find my old friends! And those of you who are new to this world – Welcome. This forum is full of support, help, understanding and ideas. Good to be back. Cathie

NGG…. Oh yeah…….a lot of us GBSers are giving up the middle finger and moving on down the road…….am truly blessed to be able to still do something I really love. Cathie………nice to hear from you….I’m glad that you are doing well….. “chillin” on the front porch sounds ideal…….hope that you continue to improve!

Thanks NGG and Tom! You know, when I was diagnosed with GBS all the literature and even the medical staff told me that I’d be fine in about 6 months, and by a year I’d be back to “me” – leaving the GBS behind. My Neuro was not so sunshiney – he told me, based on the severity of my case, we would be seeing each other for several years and I might not ever get everything back. Thank goodness for his honesty – and for finding this forum. Right away I met folks on here who were 1, 2 even 5 years post dix and still dealing with GBS issues. I still see my neuro at least every 6 months, am still on the pretty heavy med schedule that I was when I was released from the rehab hospital, and my cane is easy to get to, if I need it. I find that I do often take it with me when we go out to dinner – the end of the day is so tough. I’ve actually had to use it at school a couple of times – but try not to. And every so often (when I overdo) I have a “GBS Day” like yesterday when I sleep about 20 out of the 24 hours. But then the next day – today – I feel great!

So what is going well? You guys – and everyone on the forum who share support and have the courage to ask for support when they need it. Today, when I got up at 6:00 and planted 12 Zinnias in my flower garden, to fill in an area that I overlooked earlier this year. To have 5 males and 1 female Goldfinch on my finch seed sock – all at the same time! And to have my new little pound puppy curled up beside me in the chair as I type this. She is a whopping 5 pounds of white fuzz, with deep black eyes, nose and mouth. The vet and groomer say she is mostly Malteese so should not get much bigger – but her heart is as big as all Arizona, and is as gold as what they are now mining now in Bisbee. How can a person fall so deeply in love with an animal in just 2 weeks? She is so good and quiet as we watch the birds from the porch.

Days like this I can almost forget the GBS, until I have to take my front steps like a little girl, always leading with my right foot because that one seems to know where it is going best, and when I take my nap from 2 ’til 4:30. (My goodness, how am I going to teach this fall, with no nap time?)

But GBS has added to my life, too. I am now grateful for every day. I am grateful when I allow someone to help me if I need it. I have learned how to be humble and accept that helping hand. And I stumbled on this forum that provided me with the help, support and friendship I so desperately needed when I first met GBS. Newbies, understand this may be a life changing event, but it does not have to be all bad – we all celebrate good times we might have overlooked before. Every night I identify 3 good things that happened during the day, and share them with my wonderful husband – and he does the same. It is a good way to end the day.

Cathie

As you know Cathie, most of us had accepted the simpliest things in life until GBS came into our lives. Indeed, while it has been a struggle for most of us to return our previous “normal”, there continue to be rewards as we venture forth. Many of those gains are inward, on a spiritual or psychological level, not just a physical measure. Chris is “rockin” in Canada, I’m running again, and you are planting zinnias and enjoying your new puppy. (If I could love the people around me half as much my golden loves me, the world would be a much better place). Those are all outward signs of improvement, but in many ways they only tell part of our story. There is another part that is deep within us and hard to put into words. It’s good to find meaning and plusses to each day as it challenges us to look at the positives in our lives. People need encouragement and they need to know that over time good things can still happen. Thanks for sharing your story!!

wow…NGM I love your posts…trust me I’ve read a lot of them when I can’t sleep because of the pain.
I am only a few months down the road but Tom and Cathie you also touch on things that really resonate with me.
Cathie – My neuro also told me bluntly that this would take a very long time and if I wasn’t sensible I would suffer more, and I appreciate gettin it straight too. A cat turned up half dead on the patio soon after I came home from hospital, so I took it in and gave it smoked salmon, and it stayed. It has a limp like mine and spends quite a bit of time resting in an afternoon with me. Not content with that my daughter bought me home a bunny for a “visit” about a month ago. I love the darned fluffball and it loves me. Financially there have been huge cut backs, but the bills are paid and there’s plenty of food. I don’t give a toot about possessions now.
Tom- i cannot say more eloquently than you did to describe the mental changes that have gone on in me since becoming ill. It has rained here for about 7 straight days…..really torrential rain. My husband was complaining about it and I laughed and played him “Rain Rain Beautiful Rain” by Ladysmith. I love the smell of the rain hitting the pavement, and everything looks so lush and jungly because the weather is warm and wet….I’m waiting for my physical gains to come but I am not short of the inward ones.. lets keep on rocking all over the world Dixie, GB

Hi Dixie………….’rocking all over the world’……….I love it!!! Your story about the rain reminded me of a time when I would malign the birds singing in the early morning outside of my window…….after all didn’t they know this was my day to sleep in?? Illness brought a new perspective, and now I welcome their songs. One has to be very patient with the physical recovery side of GBS…small victories over time. Being proactive and very positive are key to any recovery. Wishing you good things as you recover ;-)p………..