First post from GBS 2-timer.
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January 28, 2008 at 6:35 pm
Good afternoon,
I’m catching up reading the previous posts as quickly as I can, and my heart is really touched by everyone’s posts, and words of encouragement.
A bit about me, I’m 33 and married to the most wonderful woman in the world (sorry, I’m biased) for almost 11 years now. I have two great daughters, one of whom arrived while I was in recovery this last time.
I was dx’d in 1994 with GBS after I noticed my legs going numb and my back feeling tingly after studying for exams (with my wife, then girlfriend). I endured a “medium-length” hospital stay and was able to re-gain really close to 100% of my activity level after a pretty long time…a couple of years.
I hadn’t thought about GBS much until this past winter. WHAT A WINTER THAT WAS!!! My wife, pregnant with our second daughter had just returned home with our oldest daughter, who is four now. They were spending time with my wife’s folks staying warm because we were without power for 9 days following a pretty substantial ice storm. I stayed in Buffalo (pop. 1,800) to take in some neighbors who didn’t have ANY heat. I was able to keep a couple of them warm, and fed…..pretty terrible times, however, as a couple of my neighbors didn’t make it, due to unsafe practices of heating with items that emitted too much carbon monoxide (propane and charcoal grills). Nevertheless, eventually my family had returned, and that first night I remember getting a bottle of water from the fridge, expecting a nice slow draw of really cold water, I felt NOTHING. I choked on the water fully realizing that my body from the neck down was beginning to feel just like it had 13 years prior…
long story short…I spent from January 20th till late in March in the hospital both in ICU and re-hab. I received IVIg and other various treatments including a “percussionator” style ventilator to clear up a pretty serious case of pneunomia that I had developed.
I’m now back at work, a Courtroom Stenographer, and am able to hold my girls every night. I still struggle with everything that I’ve read in the prior posts that everyone else struggles with…depression, residual foot pain (darn, some cold nights are rough), anger about getting this twice, anger about getting this twice, etc. etc.
I’ve been VERY touched and encouraged by everyones postings that I’ve read so far. I’ve contacted a couple people that have had GBS via the telephone list that I received from GBS Foundation International, and those calls have been real positive. I’ve only met (face to face) one other person that had GBS, a really AWESOME woman, a bit older than I am, who was in the same boat with me, this past winter. I should keep better touch with her and let her know that I care more than I do, but last I heard from her, she was doing as well as could be expected.
Sorry this is pretty long, I’ve never really wrote down the events of what happened, and when I go back and read it, it goes really quick for me…like I want to skip over certain parts and focus on others.
I’m excited to read as many of the posts that I can, and hear from many of you. Thanks in advance.
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January 28, 2008 at 7:00 pm
Brett
Thanks for sharing your story. I suppose I’m expecting too much of myself as I’m only 3 months into recovery. I’ve actually thought about moving to a warmer climate but my first grandchild is due next month and I can’t tear myself away. Do you recall any types of exercise or diet or vitamins that aided in your recovery?
Thanks,
Tracey -
January 28, 2008 at 7:55 pm
Welcome, Brett and Tracey! I am fairly new to this forum, as well as GBS, so I don’t have years of experience and knowledge to impart. Tracey, I also deal with family and friends who say I “look back to normal” (except the abnormal gait) and have unrealistic expectations. I do my best to patiently explain that I feel different on the [U]inside[/U], no huge signs outwardly other than my waddling, spastic walk and weak arms.
Brett, congratulations on the new baby! It sounds like you have a great support system built-in with your wife and girls.
You couldn’t have found a more warm, caring and helpful bunch of folks anywhere. The “veterans” have been so patient and understanding answering my many questions since I’ve been here. So, welcome. Take care!
Carla
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January 29, 2008 at 9:54 am
Welcome Brett. Like you, I am a 2-time loser. One thing I learned is that to expect it to be the same does not work. My whole expierence from beginning to now has been 2 different stories with a few similar threads. One thing is that having been through it once, you have “experience” and are not quite so frightened as the first time by the unknown. Take care.
Alma
GBS – MFv 1993 and 2004 -
February 2, 2008 at 5:23 pm
Brett,
Welcome and nice to meet you. I am 38 and in November will be my 5 year hellaversary. If I can ever help or whatever, please contact me.
Jerimy
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February 3, 2008 at 8:27 am
[FONT=”Comic Sans MS”][SIZE=”2″]Brett
That is SO not fair, having to go through this hell twice!
Beyond the pain, I think the depression is one of our biggest foes, and the least addressed problem we face with GBS/CIDP, it affects our recovery tremendously.
Glad you have your girls to make you smile.
I got an electric mattress pad heater (couldn’t bear the weight of an electric blanket) and it works wonderfully for the back and foot pain, makes my cats happy too:p
Take care and welcome from another forum newbie [/SIZE][/FONT] -
February 4, 2008 at 1:26 am
Hi Brett, Welcome to The Gang! As you see its not all that rare anymore to get gbs more than once. Myself included, after my 5th paralysis event My pcp says its cidp now with me. But I still have not actually had a neuro say a dx yet-maybe on a few possibilities but nothing that really fits the boxed versions. I’m still dxed as a unique case by the University dr.;)
Having a positive attitude and environment is the key to a good recovery. Give you girls Hugs everyday and you’ll make it through anything! That is my secret recipe anyways.:) Take care. -
February 8, 2008 at 4:54 pm
I have had GBS three times for sure and maybe when I was 8 years old. I wasn’t diagnosed then but had weak legs and a hard time walking. I had it diagnosed in 1958, 1989, and 2002. I am now 67 and my legs are weak and I get tired easily but other than that, I am doing great. I go to water aerobics twice a week. Wish you well.
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April 2, 2008 at 12:24 pm
I totally understand how you felt.
I had my first diagnosis of GBS when I was 5 years old.
I had to learn how to crawl, walk and write all over again.When I was 32 I got it again.
I thought not again.
Oh, God…not again.
Yep.
I was paralized from the waste down as well as my arms.
I had to learn how to walk all over again and this time I had a wife and 3 young boys.
The boys didn’t understand I couldn’t do the things I did before.
It was frustrating to say the least.
I am or I think I am getting better slowly.
I have painful migraines and my nerves hurt almost every single day.I just can’t wait til I am better.
I am sick and tired of being sick and tired.Thank you for sharing your story with us.
It give me encouragement and hope that I am not alone. -
April 2, 2008 at 1:30 pm
Welcome! I am an old-timer having had GBS in 83. I was the mother of 4 samll kids ages 1-9 so I understand how hard it is for a lot of you. I had a fairly remarkable recovery and have had a good life to date but am now starting to experience a few residuals (well, actually a lot of residuals) that have been dormant or maybe I just ignored them as I raised my family!! I too believe that a positive attitude and a strong faith can get you you through a lot of what we experience with GBS. You have to choose to go on living the best possible life you can and feel blessed with the things that you can do. I did grieve some of what I lost for a long time but I also gave thanks for the things I gained….love of life, compassion, empathy and experiences that I can share with others to help them as they heal. So many of us here are willing to do that and so if we can help you in any way, please do not hesitate to ask.
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April 4, 2008 at 12:26 am
Hi, Brett,
I had a fairly mild case in ’86 and then a second time in 10/06 which was much worse. But I am probably the most holistic person to have gotten it so my experience was a bit different. You did not mention what brought on the GBS both times. I am wondering if it might have been the stress in your life. That is what caused mine both times. They do not list stress as one of the ways to get GBS but I think they are wrong. I think just living in Buffalo is enough stress considering the bad weather up there. wink -
April 7, 2008 at 11:14 am
Carolyn,
The weather here is lousy, REALLY Lousy!!!!
We just suffered an EF-2 Tornado this past week. Today is the first day that I have service on the internet.
By the way: Stress is the absolute reason for GBS in my life. The first time, 1994, I was pulling consecutive all-nighter’s for exams after my first year in college, and getting ready to meet my future in-laws.
The second time, 2007, we had just experienced a MASSIVE ice storm. Power outage for multiple days – we were out the better part of two weeks, and my wife was 5 months pregnant.
Stress is an absolute factor.
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April 7, 2008 at 6:55 pm
Brett,
I apologize – I thought you lived in Buffalo, NY. But maybe both Buffalos have bad weather. I think GBS is a ZEN disease – you have to live in the NOW as far as recovery goes. Do not look behind (oh the horror of it!) and do not look ahead (it is too slow a recovery so it will disappoint you). Just accept what you have and notice the little improvements when they appear. I noticed today that I do not need to hold on to the door frame to pull myself up the big step into the house. (Not a big step for regular people.) I practiced walking normal when I went out for groceries. Now it’s for real.
I believe that the Intelligent Universe/GOD slows us down when we won’t. Guess that happened to both of us. My hypothesis is that GBS is viral although they cannot identify it. When I stopped taking my supplements for one day it came on 100 times worse. That is why I was able to keep it under control and not be hospitalized. I should have been but I was afraid of MRSA and them not letting me keep my supplements. It was a big leap of faith but I am glad I took it.
IF you want to hear an interesting experience, read what happened to JEFF in the hospital. It is makes you question reality. Just go to some of his earliest posts.
Thanks for verifying that Stress is what brought on your GBS. People argue that you cannot get it twice and you cannot get it from stress. But we know better, Brett! -
April 10, 2008 at 7:13 am
I’m not a relapse victim yet but I sure fear the thought of it. Your discussion mentioned stress, which got my attention. Years ago there was a great thread on here about stress as instigator. I won’t elaborate here but suffice to say that I was overwhelmed by stress just prior to my Dx. It’s a great arguement for leading a calm lifestyle.
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