hope and blind faith

I do agree that there is a great deal of negativity on this site, but sometimes that negativity is way for people to vent and is warranted. By your math 20,000 people will continue to suffer with this disease. I try to be positive with my posting and to show support for those that are traveling on the same path of healing. There are times, on this roller coaster of healing, that I have been negative, confused, scared and unknowledgeable. This forum has helped me during those times. I went back and read some of my first post when I was concerned that I would never heal and those postings were not always written with a positive note. I am one of the fortunate ones. I think I have healed to about 80% of pre GBS and will willingly accept any additional healing. But this 80% while sometimes is discouraging is far better than 8 months ago when fear and depression where my bedfellows. Those negative comments that are misplaced I ignore. The ones where encouraging or simple acknowledging will help, I answer. I hope that all of us will continue to heal quickly and completely, but the real world tells us that this is not the case. I am thankful as I know you are for this forum and as in any society (which this forum is) we will have different viewpoints and attitudes. I appreciate your wit, concern and acknowledgement of your progresses and hope that you continue to participate with us all.
Harryb

Yes I agree we need hope , faith, & love. I know a few people who have recoved. I know for a fact that I’m in the 20 percent who will not make a full recovery , but it’s like my mom says its better than the alternative for me, see I almost died twice. I am not negative with others recovery.
I live & look at my life by what I wrote for my quote, this helps me stay positive with myself.
My God bless everyone & well wishes to all.
Istaroaz

I can understand your view and feelings. It can get pretty “down” around here, but hey that is why a lot of us come here. We support each other, vent, get frustrated, give hope, take hope with us, sometimes we are positive and think we got a handle on this new life stuff. Other times, it gets to be a bit too much and we need someone that understands.

I have been told more than once that I should consider myself lucky, that I am not in a wheelchair or worse. I am grateful, but that does not mean I have to feel guilty because I feel ticked off about something I am personally going through. It sucks, it sucks harder for others than some. We hold each others hands and lend an ear or a shoulder and we get through it together. A lot of us may not have a support system at home that gets us. We come here to find solace and a safe place to let off some steam.

The reality for us is we do hold onto hope that we will reach a full recovery, but the odds are pretty much stacked against us and we know this. We also know there is a chance of relapse back into that hell, the chance of a future in a wheelchair or worse. We do our best to live each moment as we can. Not every day or every moment is a good one….which is usually when we come here to visit our friends and other family…other days are awesome and we may feel close to normal and do a happy dance and forget to post about how wonderful it feels.

The other reality is with illness, especially a sudden life changing one, there will be a lot of negativity no matter how hard one tries to remain positive. There are people here that are in such pain I am amazed they are still hanging in there. Each person here has their own story to tell, their own knowledge to pass along, and personal experience to share that even doctors don’t know about. Some have gone to great lengths to provide us with amazing information that adds to that ray of hope we actually do hold onto in spite of what some of our posts may say.

I refuse to let it beat me, but it also pisses me off to no end that there are days that it does give me a sucker punch. I think if it was something we asked for or did something to cause, it would be easier to handle. Heck even Cancer has ‘cures’. It is a bit upsetting that we have nothing and you can see where the negativity of being told “there is nothing more we can do for you” “you will be this way the rest of your life” can be pretty upsetting to people. We are all dealing the best we know how.

I have personally enjoyed your positive outlook, your wit and humor, and trying to get the rest of us on board. It feels that since we have not come around to your way of thinking, that you have decided to go your own way, I wish you well and truly hope you do reach a full recovery. It IS possible even in the worst of cases. There is that ray of hope again….

Peace, love and positive thinking.

I think that Harry and Lori said it beautifully. Harry has been coming on here posting his successes, but most people don’t come on here to do this because they are living their life when they feel good.

I too have found myself getting discouraged or even crying at some people’s posts, the misery that they have been enduring. If that happens, I take a break from the site for a while. You have to learn how to filter everything.Try to keep your situation in perspective. It is alright to have a pity party and have dark moments, but just hang on tight to the good moments and the light at the end of the tunnel and your family. That is all we really have in life and you have to hang onto that with all your might to get through the bad days.

I had a very dark period for 3 months in the beginning. I don’t want to go into details, but I was very afraid of what might happen and thought horrible thoughts hourly/daily. One of the doctors told me that the depression was caused by the neurotransmitters being out of whack, so there was a physical cause. I held on tight to my family, to my kids. Every morning when my daughter gets up, we sit in the rocking chair and just rock quietly and this is one of the things that kept me going, my little angel and knowing that I have to be here to take care of her and my son and to do everything I can to fight this. Even in despair, there is hope. Now 9 months later, I have climbed out of the darkness. I feel like it could be just around the corner again, and I have my moments, but I know that every day that I have now is way better than the beginning and I can take solace in that.

I too understand where you’re coming from ngg. There was a time when I had to leave the forum for I too felt there was too much negativity and that too much of my life was being enveloped by my GBS. This site is a wealth of support in good times but mainly in the hard times. I’m here because I consider myself a success story. I am probably about 90% recovered. I realize that I do have limitations that I did not have prior to GBS but I also realize all the amazing things that GBS has taught me. My endurance is weak, but I have learned perseverance. No matter what life throws at me I know that with God’s help I can make it through. I am very strong in my faith and know that it is only because of that faith that I am where I am. I’ve had GBS twice. I used to live in fear of a third. Not anymore. Some days I have numbness, but most days I do not. I do live with pain, but I rarely take anything more than tylenol. I save the neurontin for the difficult days. I also have gastroparesis because of my GBS. Thankfully Im able to treat it with my diet.
I remember the first time I was able to play my clarinet and flute again. I was scared to death and it sounded pitiful, but I did it. Each attempt was better. The first time I was able to wear high heels again I was overjoyed. Did I wobble? Yes. But I did it. Its been almost 7 years now and Ive never stopped wearing them. They are a part of who I was and who I am. GBS changed my perspective on life, but it didn’t change me. I am a stronger woman because of it. In some ways I am thankful that I was blessed with the opportunity of living with GBS. We do not just exist in this world, we are living in it. You and I are amazing people because of this disease. Find the blessing in your everyday discoveries, whether its being able to play a chord you couldn’t yesterday or simply making it out of bed. I thank God for every day I get out of bed, walk to my car, drive to work, work an entire 8 hour shift, then go home to my family. Some days are easier than others, but I find each day a blessing.
Those of us on this site have a special bond. We did not choose this disease, but we do choose how it effects us. I am determined to live my life to the fullest I am able. I believe that you will too.

Mandy,
I chuckled at your comment about feeling blessed from the experience. I was diagnosed in March with GBS and had challenges, but nothing like I have read with others on this board. I still walk very deliberately but can do most anything I want to except run. I have told people I feel blessed by the experience and I strongly believe this. I am lucky, I don’t live in pain from GBS and only have to deal with minor inconveniences now. All of us have improved from the very bottom we hit and the recovery experience (ie- like learning to walk again and balance returning) has its rewards and challenges.
I have a second chance. I am not as good physically as I once was, but I am tougher mentally and no longer sweat the small stuff.

I have been on this forum for almost 9 years & have probably seen hundreds of GBS & CIDP people come & go. The GBS patients or more likely, their families, come here in desperation at the early stages of a devastating illness that they cannot even begin to comprehend. They need a lot of help in the beginning, because GBS hits so quickly & so totally. I have watched as their loved ones slowly get better, & finally they leave when recovery is reached. This is as it should be. Remember, the stats say that 80% of classic GBS cases make a full recovery…

The CIDP people come here with so many unanswered questions, as CIDP is much harder to dx, & the symptoms can be so varied. Many go on to find out that what they thought was CIDP later turns out to be CMT, MS ALS, etc. I have answered the same questions more times than I care to admit; I had over 2,000 posts before the sight crashed about 3-4 years ago. If a person has GBS & makes a full recovery, why would they stay on a forum like this for years? Or if a person has CIDP & it is reasonably managed by IVIG or another treatment, they will go on & live life. So it does tend to be those with incomplete recoveries who remain here, or the more severe cases of CIDP. It doesn’t mean that they are negative people, that is just the way it is. I stay just to help out others who are new to these illnesses…

NGG,
It’s funny that I did not pick up on the negativity. I picked up on people asking for the latest Pain medication..what works. They say that insanity is doing the same thing you are doing and expecting different results. When I had my first bout of GBS in 1986, which was so much milder than in 2006, I searched for Anything that would help me stop the progression or heal faster. I even considered Macrobiotics. My fantastic, wholistic doctor said he didn’t think that would make a difference and it was a lot of work cooking that rice, etc.Looking back, he was right. BUT I was looking for something the doctors couldn’t give me…..I was attempting to take control. That takes away some of the frustration of this syndrome. Yes, the medical profession has labeled it a syndrome…like “Hey, we don’t know what causes it, but you have it!!Give it Time” Yeah, right…easy for them to say. No wonder there is so much futility and frustration.
I do not think looking in that direction is the answer…..because the doctors don’t know…..they can only offer medications to handle the pain. Pain is your body’s way of telling you it needs help. I wonder how many people on here have made a major attempt to take control….look outside the box of the medical profession. We are like plants living in the same soil..depleted of the minerals, etc that it needs..having been through a trauma….Is the plant going to flourish if we don’t replenish it with plant food or new, richer soil? My efforts have paid off….because my residuals are few..
Since our nervous systems have been attacked, I think that many might be suffering from a Serotonin imbalance. I started taking this particular amino acid that helps the body make more serotonin, and it has lifted my frustration and anguish. I think some of the negativity might me related to a serotonin imbalance. BUT I do NOT recommend a pharmaceutical that inhibits the serotonin from leaving the body…..that is the wrong way to approach the problem…in my humble opinion. And does not work as well and has side effects.
So I got rid of my frustration by taking control and taking something to boost my serotonin. GBS is way too slow for recovery…..there’s the problem. I don’t blame them for thinking recovery will never happen…..it does though…..and you Can speed it up! I am a walking example of it.

I think you are confusing acceptance with negativity. I had GBS full blown, but recovered enough to lead a very normal life. Was I left with some residuals? Yes. After 25 years, did I begin to have problems that they are now saying is from Post GBS Syndrome? Yes. Like so many people who have had or who currently have GBS, I was told that I would make a full recovery, that it was like getting over a case of the flu. Well, that is not true and for YEARS I could not understand why I would get so fatigued, or why my feet would feel “fuzzy”. Doctors would say that GBS couldn’t be the cause because I was 100% over that.

You will probably get better, but GBS is not a case of the flu. It is a life threatening and life altering disorder. That doesn’t mean that you cannot learn to live with the hand you are dealt. Recovery to me was being able to breathe on my own and walk again. I am thankful everyday that I recovered enough to raise my kids and run a business but I believe that people need to know that they are not alone. I was so relieved to come on this site and find people who, like me, had GBS years ago and were beginning to have problems again. Doctors would just look at me and say, “I don’t know”, but on here people said, “I know exactly what you are talking about.”

Stop dwelling on what you cannot do and live each day as best you can. You might get better and you might not, but you survived and the odds are in your favor. It is not a matter of being negative or being positive; it is accepting the outcome and living your life. There is no magic pill; if there was, I would have taken it long ago.

northernguitarguy,

You might get stronger than your older relatives but even if you don’t, don’t waste your days lamenting the fact. Get out of bed because you can!

You miss my point. I DID recover almost 100% or at least what I assumed to be near normal, but I had some residuals that no doctor would recognize as being from GBS. Telling people that they will recover 100% and then having that stand as a medical fact causes a multitude of problems for GBS victims. Residuals and Post GBS Syndrome are REAL and not discussing them or continuing to promote the false claim that GBS will just go away and be some forgotten illness is unfair to those afflicted with this disorder. And for every person who comes to this site for advice or just to vent, there are thousands who suffer alone. I personally know three people right now fighting GBS or CIDP who do not have computers. They come to me and I tell them to fight like h-ll to get better. I did work out and lift weights and ate all the right things, but one day, 26 years post GBS, I woke up and my feet were numb. I was tested for every conceivable neurological disease and finally was told that GBS was to blame. I was told,”Hey, we were wrong. You do get nerve damage that will show up later in life and your workout routine probably made it worse.” Now, those people who ask for my advice, should I just say, “don’t worry about it. You will recover 100% and when you have continuing problems, most doctors will tell you that you don’t and your family and friends will look at you and see nothing wrong, so buck up.”

This site may be filled with people who have not had good outcomes or who just want to talk to others who have lived with this rare and misunderstood disorder, but for someone like me, who had GBS 34 years ago, it is a God send. But I am proof that you can recover and can lead a normal life. I guess my problem is that everyone believes, because that is what they are told, that anything less that !00% recovery is not acceptable. Thousands of GBS victims live their lives in quiet frustration because we continue to spread the belief that GBS patients usually recover 100%. Just a few months ago, I went to my GYN for my yearly physical and he asked me why I put down Neuropathy on my updated form. When i said it was from GBS, he replied,”but you had that so long ago”. I had to educate him, as I have several doctors, on the new findings about GBS. Yes we need to do whatever we can to recover and we need to keep a positive attitude but we cannot be blinded to the facts. That helps no one, especially the GBS patient who suffers from the lack of support and compassion from the medical community and even their family and friends.

You seem like someone who will continue to work toward a better outcome and that is great, but make sure you take time to realize just how far you have come. As for the threads that seem negative, don’t read them. But realize that these people need a safe place to vent their fears and frustrations because it is probably the only place they can do that.

NGG,
During one of my first few days on this site, I had a reply from a man who said ” Stop being a martyr….get to the hospital!!!” That hurt. I shall never forget his name and what he said. But there were other nice supportive people who replied and that made up for his cruelty. I made the correct decision…the hospital would have stopped me from taking any of my supplements and that is what saved me. So what I am saying is that there are enough of people who post replies that will override the negative ones.
Ignorance is Bliss quite often. During my first bout with GBS, I found the book No Laughing Matter…which decribes in detail Joseph Heller’s account of his GBS. Luckily, I did not read that until my condition had turned around for the better.Only then did I realize how bad it could have been. During my second bout…20 years later… which was much worse, I had not known that GBS is also called French Polio…that might have scared me enough to think I could not fight this on my own. I prefer the word Naive….sounds nicer!
Being a teacher, I know the responsibility of not hurting someone with the wrong comment….it can scar them for years.
As for someone saying that the healthy people don’t stay on the site, I feel a responsiblity to stay on…as they say…
Friends help you move; Good friends help you move bodies.(love that saying!) It does not apply but it makes me chuckle!!

I have to agree with Boomerbabe….the residuals that are not taken into account by doctors, ssi, family, friends, etc are difficult to deal with. They can be debilitating. Others find ways of dealing and get on with their lives.

I happen to find the loss and the acceptance difficult when residuals flare up. Will I recover and never have pain or difficulties again? I have no idea. At this moment in time it is hard to think of life without residuals. I also have a problem working within my limitations because they vary. One day I may do nothing but take it easy, the next I am cursed with a flare up. Another day I may over do it and risk paying for it over the next few days, and wake up with little to deal with. I won’t stay in bed and wonder what is coming next, I do what I can and some days that isn’t very much. I haven’t exactly given up completely that I will recover more, but the truth is after much research 4 years is about the max for A LOT of improvement. The rest is so minimal that we may not even realize it. There is a time you have to accept the truth and go from there. You don’t have to accept you will never heal, but driving yourself crazy like I have thinking it is ALL or NOTHING won’t help your progress. Today….my legs are burning and feel weak. Didn’t over do a damn thing yesterday but I know if i had a job outside of home I would be calling in so I could rest and hope tomorrow is better. Because you always, if nothing else, have at least that in your corner. Today may suck, but there is a good chance tomorrow will be better.

Don’t give up, keep holding on to the hope that there will be major improvements in your case. Hope is what keeps us going, trust me. But also remember, there is that chance you may not be one of the few that have little to no residuals. Don’t beat yourself up. I have done it for 4 years now and it has gotten me no where….being stubborn is what kept me off a vent and shuffling and bathing myself while leaning against the shower wall. But, being stubborn has also led to more down days than up because I pushed too hard or insisted on doing something I should have asked for help with. You are new to this, give yourself some time. We were all where you are right now, we are just in different places and different phases of acceptance (or not). Set small goals and when you meet them, scream from the rooftop and be very proud of yourself, but also keep in mind that you may or may not reach them the way you think you should or could have before GBS put some limits on you. None of it is a failure even though it sure seems like it sometimes. I have cried plenty of times feeling like that, being ticked off, and of course asking ‘why me?’. Hell, why any of us? Just don’t forget you are not alone in your fight and any struggles you may face. We are either right there next to you fighting a very similar fight, or are on to another phase of our journey.

All you can do is get as better as you can. Keep a positive attitude. and accept every giant stide as a baby step toward where you need to be. If you keep get halfway there, you will never reach your goal but you will get pretty dam close. Heal well, live well and if one foot or leg is better then the other put it out there first. Nouthern Guitar guy keep that positive attitude it will always serve you well
Harryb

FOM? You are right in many ways, in that some docs give out ‘the maybe’s’ too often? Docs say, ‘trust me’! at times when they’ve no clue what to do? Others say ‘trust me’ to keep you off the anxiety meds [DUH?] And on and on.
I tend to try and be realistic. Interms of what the medical profession as it is today can do for me, if anything!
I adapt, I compensate, and try to be sensible about it all. What is right for me? Mite not work at all for you!
I don’t know about you? But I try not to be negative? I truly hope it’s not me that is the ‘bummer’! It is true tho, that we each fight our battles as best we can when we can, and with the INFORMATION we can get. Then…? at times, we’ve got to convince docs that maybe ‘this’ rather than ‘that’, mite be the way to go? What’s the saying: Nowhere to go but up for me!
Every time I get to a point, where….I’m actually doing OK? Well, the fates intervene!
On the postives? We are breathing and eating, etc. on OUR OWN. We mostly can walk and/or get about somehow safely. We still have some family and friends! Treasure all these things! Treasure good folks here and HOPE!!!! Hope is the key to trying. And, you’ll never know unless you try!

Homeagain…oh you are not a bummer at all! And I agree with you. We have to work for ourselves and be more persistent with our doc’s. The health system is all about $ not about real healing or what is in our best interest. I am still learning to speak up and not just nod my head and agree with the dr’s I see. They too are learning since they may not know very much about what we deal with if anything at all. Only WE each know what we individually deal with and are going thru, and what may be easy for one of us may not be easy for another and the same like you said goes for treatment too.

I know what ya mean about “wow I feel okay” and BAM! it hits you and you are not okay suddenly or the next day. How do you put that into words that make sense so others that are not living our lives understand it? Ugh.

Please, let’s stop this . Everyone has their own pace or level at which they recover. We are all suffering so much and come here for refuge and help, lets not hurt each other more. So many have had this for so many years, they have experience in these situations that is so much more valuable than what the medical profession “writes” about. No one on this site wants to depress or down new people, they just want to help them and give them their experiences. The new people can choose to listen or not, to anyone with any opinion, but insulting each other no matter which view one holds can only push new people away from more drama that they do not need. I would hate to loose someone who might neeed help. Please lets just be kind to each other. I CAN say this from experience, as I too was caught up in one of these situations and I think it did permanent damage to this site in regards to what people are willing to do to express themselves here. Let’s just try to help each other, I know
I could use the help!!
Please lets just forget about things.

I’m asking also, please stop with insulting.
Since the time Dawn is speaking of seems like quite a few members have left the site and do not post anymore.

New members need us all, whether it be negative or positive. They want and need answers about their own situations. New members know we are not doctors but they do know we have traveled this journey they have just started. It’s not an easy journey and we don’t all travel it the same way as they will find out.

Shirley

[FONT=”Microsoft Sans Serif”][FONT=”Microsoft Sans Serif”]ngg,

i understand your point. there does often seem a tendency to generalize based on one’s experience and/or perceived knowledge base. the situation referenced by dawn and the other following her has to do with me– when i was so happy to provide folks on here with the fact the the stem cell transplant had “cured” me– hoping to essentially provide hope to new folks, or older folks, that look for the potential to rid themselves of this illness. i was [I]’handled'[/I] for using the word “cure.”[/FONT] i felt my “cure” had been inappropriately refuted… hence, the posts & threads ensued– many supported me and i received numerous private emails and messages from folks supporting and cheering me on, although fearful to post it publicly due to the temperament of some or general culture of the forum– i also was harshly criticized by a number of people openly– all fine really… my [U][B]only[/B][/U] point or goal was to provide knowledge of what had worked for me. and that is what i did. did some folks leave the forum afterwards? it doesn’t matter. if i was able to give hope to one person, they are worth more than 10 people whose sensibilities may have been bruised by the debate that subsequently carried on… (with respect…)

the point is, there does seem to be a tendency to not allow others their own experience, whether it be in the predictability of healing, or being “cured.” (as an aside, i am still cured– going back to work soon and feel almost 100% — something i wish upon even my critics here– a cure that is) having said that– i do think there is much support and good information exchange here as well– kind of one of those take the good with the bad or find another playground to mess around in ;).

you began a thread to discuss hope and blind faith and it was pooped upon. my “cured” thread was pooped and pee pee’d upon. i guess that is just the nature of this forum– not good, not bad– just is.

for what it’s worth ngg, with your attitude, i am quite sure you will meet the statistical odds of which you rely.. keep the strength brother– soon you’ll be strumming that guitar, perhaps with even more heart than before gbs–

peace all![/FONT]

[FONT=”Microsoft Sans Serif”][SIZE=”2″][I]p.s. hi dawn– i hope all is as good as can be expected (i know you went through a lot recently) also, i had a full treatment for SIBO (aka leaky gut)– call or write me if you want to discuss my protocol… hope kevin is doing well.[/I][/SIZE][/FONT]

I think I know where Guitar Guy is coming from, and how frustrating it is too hear the “negative” experiences when you are trying hard to look on the bright side. I have MS, and my husband has CIDP. I have always been an optimist and believe strongly that the course of my MS has been affected by my good attitude. My neurologist many years ago told me not to become my illness. I heeded her words and have always looked on the bright side of my life and have always put aside any complaints or negativity. Hubby tends to be a glass is half empty kind of fellow, and even though he is much less disabled by the CIDP than I am with the MS he does attempt to dwell on the “negative” parts of his journey. The only time we argue is over this issue–as that attitude can suck everyone down a deep hole. I can wing out on him when he starts with the litany about how he isn’t getting better and never will. From my own experience, that is not the road to go down. I want to live with hope and positivity, and I always keep in mind that our minds and attitudes do strongly affect healing. So Guitar Guy winged out over this issue–sometimes it’s hard not to when you feel passionate about trying to get a concept across. Let’s all try to respect one another and move along to more positive things.
Laurel

You may not like what you read here, but you asked and we answered and YOU had no business insulting either of us. We were being HONEST with you, and sharing our own experience (which we have more of than you do with this), our extensive research, and I even told you to hold onto hope and not give up. Not once did I tell YOU that YOU would not make a complete recovery, I pointed out information that would help you in your own personal journey. If you want sunshine blown up your skirt, don’t come crying here when 4-5 years from now you may still experience residual issues.
So here ya go *sunshine*…..You will make a complete and full recovery with no ill effects and go back to living the amazing life you had before getting struck down with this syndrome. I am not a doctor only someone who has been where you are right now.
When my mother lay in the ICU on life support, it was heartbreaking. There was only ONE doctor who was dead honest with me, I will remember his honesty and sharing his knowledge forever. She had suffered respiratory and cardiac arrest, been worked on for over 45 minutes. And everyone kept saying there was a chance she would be fine. I knew better. IF there was any chance she was not already clinically dead, she would be a complete vegetable the rest of what ever life she had left. The facts are written out about how long and what the stats are for recovery with something like that because of so many patients having been in her situation or similar. That ONE doctor looked me in the eyes when I asked him if there was even a small chance for her and told me “No, I am so sorry. But this is not a situation she will ever recover from”. That is the only doctor I had contact with those three heartbreaking days that I respect and remember. He didn’t fill me with false hope or give me a fine thread to hang on to that would break and hurt even more. He was honest because of his experience and knowledge in the area. Are there other cases of complete recovery of cases like hers? Yes, very few, but yes. And that is exactly what we told you about the reality of GBS and CIDP.

We are all here to help each other out and share info and stories and experiences. I have learned so much from my GBS family, some have gone to great lengths to gather information and pass it along with no expectation except a thank you and a hope that it helps someone else out. Without this group and their support, information, stories, and experience I don’t know where I would be. Does this suck? Yep. It sucks more for some than for others….remember that. YOU are not the only one hoping for a full recovery tomorrow or the next or years from now. We have all tried being supportive of you, appreciated your upbeat attitude, and shared what we had when you asked for it. If this whole thing has you down, don’t take it out on us. We have enough “down” to deal with without being attacked or called names.

Enough with this. If you read through the posts here, you will find a lot of HOPE in them which is what you are looking for. What we will not do is lie to you. Or call you names.

You are just a beginner here on the forums.
Come back in 20 years and tell us about your recovery !!!
Now about my God that you say we can’t see with our blind faith. My good friend, I can see my God everyday ! Read Psalms chapter 19. When you read that and you still don’t see God and don’t believe in God…read Psalms chapter 14:1 If nothing else GBS has increased my faith in God. NGG, I would love to lead you to know the Lord and to spend eternity with you in heaven.
God bless,
Drummer

I would just like to add my personal opinion on your case (and I am just an ex-English & math teacher, not in the medical profession.). I went back & read most of your posts from the beginning & believe that you will heal 100%. I base that on when you became ill with GBS & how well you have progressed already, your young age, the fact that you were able to walk out of the hospital after only 10 days, you did not need a ventilator, you can mow the grass already, lift hay bales, etc. I have met many who have made 100% recoveries myself (MN has twice a year meetings for survivors), & would definitely put you in that group. If you choose to leave the forum, I believe it would be because you are recovered enough to get on with living your life, & that makes me happy for you, I have seen it happen many many times. Good luck to you & the great future I see for you…

I’ve never been a believer in any kind of faith and I’ve recovered from CIDP beyond 100%.

My attitude was terrible when I was really sick, could barely move at all, and nearly died in a nursing home.

But I’m determined to never let that happen again so I’ve continued a rigorous workout routine long after rehab and a strict diet (low carb, low fat, low sodium, low sugar, high protein, very high fiber, no junk food, no fast food) and have lost 85 lbs since July as a result.

I feel 10 years younger these days and my current attitude reflects that.

Having a positive attitude when I was at my worst was impossible for me. It just simply wasn’t going to happen until the results began to move in a positive direction. Once it did, I haven’t looked back since.

Not an ounce of faith in my life and I’ve done just fine. It’s not for everybody.

Emitch74:
Good for you. Having made a recovery from this hell, you have nothing to apologize for. There is no right of wrong here, there is only coping and hopefully healing. However that is done for each of us individually, is our personal journey. Keep up the good work, kid.;)

Thank you for the kind words.

That’s the way I see it, I have nothing to apologize for.

Like Sinatra used to say, I did it my way – and it has worked far better than anyone could have imagined. My neuro simply can’t believe my transformation.

Hi Ya NGG,

I just got in on the end of this post and didn’t read all of it so I’m just lightly commenting. From my personal experience, I have found this forum to be very important to me emotionally. I have needed support at times and have seen others need it and try to lend a shoulder to cry. And I believe we are helping to bring knowledge to doctors who aren’t perfect… who is?

I love your relationship with music – it is inspiring. Whatever path you choose, just keep on rockin’ 😀