I am taking a break from THIS forum for a while.
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January 31, 2011 at 10:07 pm
Some folks here seem to think that THEIR way IS the ONLY way. And for most, IT is NOT. Nor is the access to key diagnostics [however YOU define them-regardless of international protocols…which I’d posted ages ago, but which were ignored?]
So YOU – YOU know who you are? YOU GO out and HELP everyone?
Some here? Think that the GBS/CIDP IS the DISEASE.. Mite not be soo. I believe it to be the result of a lot of bodily insults…all TBD. Be it one’s favorite theme of ‘leaky gut’? Or the fact that MANY other neuro or immune [not necessarily AUTO-IMMUNE] issues impact or affect us all? Do not give up? Trying to find out, tho-likely not? ANSWERS. In my own case? Pneumonia not treated properly or promptly resulted in my own ‘insults’.
As a result, CIDP IS a CONDITION, not a disease..can’t be spread and isn’t always inherited… so.. there IS some other factors in play here. Thing is, for each and every individual to be their own detective and figgure it out!
We live with what we have, and try to get by. I get by better than many? And thus, I fear others might envy me. DON’T! Where I’m at? YOU don’t want to be, and honestly? I don’t care what ‘some’ think? I’m taking a break! There are toxic forces out there! Bye for now. -
February 1, 2011 at 12:20 am
I will be sad to see you leave. Many of us newbies need all of you out there. It’s nice to hear all perspectives. I do agree that this is a condition. Not a disease. I’m suffering from symptoms caused by ??something, or ?? many things. However, it’s so nice to hear all perspectives. Please stay on this site. We need everyone.
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February 1, 2011 at 12:20 am
I read your post 3 times, & could not make heads or tails of it. And to think I used to be an English teacher? Are you leaving because you just need a break, or are you offended by something someone did or said? I have seen so many come & go during the last 9 years, most just quit posting & it takes you awhille to realize that they are gone. Few choose to announce they are leaving, so what is your point? If you were offended, are we to guess which post or person? I am seriously curious about this post, used to read Tolstoy, Dostovesky & Solvenitzen, now those I understood.
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February 1, 2011 at 1:10 am
I understand your need to take a break, and/ or stay away from this site forever if your need. I rarely check the site anymore. I have done my detective work and quit ivig(weekly doses for 3.5 yrs) to work with an alternative practioner. My nuero has given his blessing, and we have not been disappointed!
10+wks post ivig and I’ve got no more neuro loss and still improving week to week. Feeling better than I have in yrs and I’m not done yet.
I wish all the best and easiest path they can find to wellness.
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February 1, 2011 at 6:45 am
Teh internets is serious bizness!
[IMG]http://schend.net/images/funny/internet_serious_business.jpg[/IMG]
Try to have thicker skin and not get so worked up over what various internet personalities do or say. You have a right to voice your opinion on various topics and others have a right to question your assertions. A healthy community requires many different voices contributing to the conversation.
Relax. Stress exacerbates these illnesses. Try not to let anyone get to you. Life is too short.
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February 1, 2011 at 12:59 pm
Sorry to hear that homeagain. You have offered so much good advice to so many people. Hopefully, you will be back soon. I have found that I have to take breaks too. Sometimes I get sad by people’s stories, other times there is a lot of negativity and others, it is people not recognizing that there are many ways to address a problem and that one solution does not work for everyone. Some people cannot afford certain possible solutions or do not want to take very serious, life-threatening risks. Everyone needs to find what works best for them, support others and not judge, but that is the ideal situation, right? I was telling my therapist about what people say to me, “well, have a positive attitude, exercise, etc.” and she said, “why do people judge others?” One person’s response to an illness or bad situation can be different than another’s, by why is that person judged as weak, if he/she does not have certain coping skills? Another person is “amazing” for handling it a certain way. I found that very interesting. The reality is that is true, but it is something to think about.
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February 1, 2011 at 3:13 pm
[FONT=”Microsoft Sans Serif”]i send you a big hug.[/FONT]
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February 1, 2011 at 6:37 pm
Sorry to see you go–You have wonderful information to share with everyone–I thank you for the great sites you have steered me toward and wish you the best. Lori
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February 1, 2011 at 8:11 pm
We’ll miss you Homeagain. You always have something interesting to say. Take care and don’t stay away too long. Families do tend to have spats and get lippy at times, but I understand the need to have a break.
Laurel -
February 2, 2011 at 11:26 pm
I am sorry for what you experienced here. But, here, as everywhere people can be misunderstood, and sometimes people can be rude. I hope in your case it was the former.
On the other side of the coin, stress is probably one of the biggest aggravators of our condition. If the site causes stress, you don’t need it.
I have read lots of your posts and have shared several conversations through the forum. You are on the ball and are absolutely a fine person. I hope all works out for you in the end.
Dick S
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February 6, 2011 at 9:09 pm
I’d like to think of this site as a place of civil communications and exchanges of good and solid ideas. At times, it has not been like that lately.
I’m not uncaring about anyone’s situation, matter of fact? I COUNT MY BLESSINGS each and every day I am able to get out of bed and walk!
I cry for those who find they cannot, as I’ve been there!
I have always tried to put my ‘ego’ aside here, and never imposed any ‘opinions’ onto others, merely a suggestion or two at any time.I’m also scared to the point I MUST respect this ‘condition/disease/whatever’! Why, Because I know of someone who has it, as a complication from a series of misdiagnoses for other usually, easily curable events. That person, has lost mobility, stability, motility, abilility to eat anything, and has been losing sight and hearing.
I not only respect CIDP, but like most, as we should be? I am TERRIFIED of IT. As I get up each morning, I sigh in gratitude that I CAN get up! And have not gotten to the point yet, where I cannot! Again!!
Each of our situations is different, from start to finish, as a rule. BUT? The ONE thing I’ve found is that there are NOT enuf docs aware that what’s happened to US CAN HAPPEN! And does! OFTEN! We’ve got to work on our doc’s awarenesses, and fast!
I’ll bet if someone could get into the ‘HHS’ Statistical data banks [they keep track of this stuff? Truly] That there are far more undiagnosed CIDP/GB S’ers’ out there than you can imagine.. Likely five for each ‘reported/diagnosed’. Think about that. Think about what you can do… Bless all of you! -
February 6, 2011 at 9:56 pm
[FONT=”Microsoft Sans Serif”]and welcome back– you were missed.
thanks for all you put into this forum 😉
~alice[/FONT]
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