August 9, 2008 at 8:25 pm
sorry no info
August 9, 2008 at 8:44 pm
yay! I love having you here and would miss your insight and help. No guilt, you gave your opinion and wanted people to see that they needed to make an educated decision before trying something else. No reason at all to feel badly. We are here to learn and to share, to support each other too. We are family and we love each other and hope the very best for each other. Thank you for sticking with us!!
AnonymousAugust 9, 2008 at 10:03 pm
I’m glad that you have thought about things… Like my wife says e-mails and forums are so different than verbal forms of communication… I think we all would understand if someone moves on or takes a break;
The funny thing about this forum is for the most part, all of us are either stressed, fatigued, over medicated, under medicated, sick, paralized, tired, in pain, etc.. etc… etc… Plus, our nerves are whacked out! No Wonder we don’t think straight!:)
I remember reading something recently about you talking about how Kevies mood changes a long time ago (Like Jekyl and Hyde).. I think our significant others/friends see that in us all the time, as we fight thru this.
Thank you for sticking with the family…dean
AnonymousAugust 9, 2008 at 10:07 pm
Dawn, I so glad you reconsidered. I had not been following the thread in question until I saw you good-by thread. I posted this a few minutes ago on the that thread. I thought you might want to see it.
[I]OK, people lets back up a bit. This site is about helping each other. There is a wide range of experience from the holistic approach to the single malt and aspirin approach [my personal favor some 20 years ago when I was young and stupid. Now I am no longer young] and all sorts of varied degrees in between. What works for one will not work for another. If it work for you great and thank you for sharing your experience. However, someone may have had an adverse reaction to the same approach, so a word warming is not a bad idea. The end result is we are trying to do the best we can with the cards we have be dealt. Things are not always easy when most doctors have no idea what going on. Some may have hear, read, or talked to someone about GBS, but they have never treated diagnosed and a person with it. My experience with CIDP is somewhat different. Most doctors have never hear of it, let alone diagnosed and treat anyone with it. The podiatrist who amputated my left little toe told his nurse that I “had some weird kind of neuropathy”[CIDP]. Please remember that we are all in this together to help each other. If we begin to lose member we lost experience and that’s one thing we can not afford. We have lost to many long time member already when their time here on earth came to an end. The lost of one diminishes us all. [/I]
August 9, 2008 at 10:13 pm
well said Jim!
AnonymousAugust 10, 2008 at 10:04 pm
As I take a deep breath and wipe away the tears from frustration I think what a great loss to loose anyone from these forums. Dawn Kevies mom I am glad you took some time to reflect on how much it would mean to us if you did come back. It is not until someone leaves that they are told how much they are appreciated and how much you mean to us. I have this illness. Your constant posts to others have helped to educated me on how different we all are and how we need each other to understand ourselves. These forums have given me the strenght to not give into this illness and dig dig dig to get better. be patient and ask questions. Make me know that I can help my Doctor understand what I am going thru….since none of us are the same. I have gained the respect from my Doctors and they have gained my respect. We have both had to take a step back and look things up. Make phone calls and know when we are in over our heads. We are only as strong together. We can not afford to loose contact with each other. Every voice needs to be heard and we have respected that from every angle. It is just that here we don’t think we are always right, we know it is what we found worked for us and the others shared with us on some of the quick fixes that just don’t work. I may not reply to your posts or others posts…..it is because I agree or I feel I am not qualified enough to comment or it just does not pertain to my condition. But I read! Sorry there was a misunderstanding and hope we grow stronger from it! Thanks for all your help!
AnonymousAugust 11, 2008 at 3:15 am
Unfortunately, something like this happens every couple of years – believe me there have been some whoppers over the years. I really like what Dean said about forums being so different than verbal forms of communication. Posting and support can be stressful and emotional in itself, and getting deeply involved with GBS/CIDP forums and patients takes a tremendous toll – many times people who have participated for years remove themselves a little because of the highly emontional environment. I have to admit that I dont post anymore when there is anything slightly controversial because I have found that disagreemement often leads to nastiness because the post is misunderstood – and I’m trying to lead a more peaceful life in my old age 😀 .
AnonymousAugust 11, 2008 at 8:40 am
I am very sad to come back from a week off and find my friends, family and fellow sufferers have had such a rough time. I don’t know where things got mixed up, and I don’t want to rehash old news as it seems we’re on the way to getting over it.
But I do want to say that whether we are the one with the disease or the one taking care of the person with the disease none of us has a so-called normal life. We, as the ill, want to be more, to do more, to be what we once were. They, as the caretakers, want the same for us, but they ALSO want to be what they once were. They suffer for our pain that they can’t help, they suffer watching us struggle to do the things we once could do, and they DO all the things we once could do which leaves them with less time to do the things they want to do.
We are all under a great deal of stress and many consume a cocktail of medications that barely control the pain and misery these diseases bring us. Likely all of us suffer from lack of deep healing sleep, we’re all fatigued, tired of being sick, tired of our children or spouses being sick. All of these forces combine into powerful frustration and the need/desire to lash out and release the frustration and tension.
I think if you decide to be part of a family then you have to accept the good with the bad. Sometimes you will be misunderstood, sometimes you will be the victim of someone’s misplaced frustration, sometimes you will be the one lashing out and regretting hasty words. These things happen in biological families as well as the families we build out of shared interest and caring. It is actually a testament to our closeness that we do feel comfortable letting off steam here and sharing personal miseries. That’s kind of the whole point for me – I don’t share many details with my biological family because they just can’t relate to it but I know I can come here and there will be someone who can sympathize if not relate to my issues as well.
I’m in no position to make this request except that I feel like I’ve been in this position a million times in my life – can we please have just a little more patience with ourselves and each other? I’d rather have some ASK me “what did you mean by that” than assume I meant anything judgemental. Considering my brain functions at about 30% most of the time the only thing it’s safe to assume is that I’m not always thinking clearly. This may be the case for other people as well and a dunking in the well of patience would do us all a world of good – wash away all the muddy thoughts, so to speak. 😉
AnonymousAugust 11, 2008 at 11:34 am
Well said Julie. My mom used to say “You can choose you friends but you can’t choose your family.” I think the same is true here. We didn’t get to choose our illnesses nor do we get to choose who comes here for support. Therefore, we need to be accepting and tolerant, educate where we can and let things go when we can’t.
If anyone is interested, there is a study that was done by Albert Mahrabian back in the 70’s that talks about the various pieces of communication. It was a leading study in it’s day and continues to be the leading study today. It breaks communication down into three components and when you look at the written word you only have 7% of that communication. You are missing body language and eye contact, facial expressions, tone, pitch, resonance, etc. It is so easy to misunderstand or to not make ourselves clear when all we have is the words. Sometimes, no matter how hard we try with written word, we will still be misunderstood and it is at those times that it is best to just let go. Pick your battles!
Dawn, I am so glad to see you posting. Good for you for letting go.
AnonymousAugust 24, 2008 at 3:16 pm
i just read the part where someone said to “pick your battles” and it reminded me of something. when im struggling with a “battle”, deciding on whether it is worth fighting, i go to the Five-year Rule. If the battle is over something that WILL affect my life five years from now, then it is worth fighting for. If it WILL NOT affect my life five years from now, then it may not be worth the nonsense.
For example, my son not doing his homework or skipping school would be worth the battle. My son getting a green mohawk would not.
August 26, 2008 at 9:19 am
CIDP is scary and unknown.
It is also a very heavy burden to carry.
Two of my favorite Bible verses come to mind …
[B]Galatians 6:2 [/B]Carry each other’s burdens, and in this way you will fulfill the law of Christ.
[B]John 14:12[/B] [COLOR=”Red”]I tell you the truth, anyone who has faith in me will do what I have been doing. He will do even greater things than these, because I am going to the Father.[/COLOR]
You’ve probably heard the story of the statue of Christ in a European Church yard that lost it’s hands during one of the world wars. The hands couldn’t be restored, but an inscription was added “Christ has no hands in the world today, but yours”.
I believe God calls us to work for Him (and they’re more often than not unpleasant or difficult tasks). But often we get a deep satisfaction from the serving that transcends the task.
But from me personally … Thank you for answering His call. Thank you for helping with my burden. Thank you for being Christ in the world today for me (for us).
This discussion forum (you, you all) have illuminated the path and lightened my burden.
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