Journey of a child was moved to the Spiritual forum

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Journey of a child was moved to the Spiritual forum

Postby mom » Sun Jan 30, 2011 2:51 am

To all of those who are following our journey, the MODS ???? thought we needed to be moved. I was not notified, just went to post and couldn't find our story. Thank you for all who have been following, you can find us in the spiritual area. I won't apologize for my faith!
MOM
Last edited by mom on Mon Feb 07, 2011 4:43 pm, edited 1 time in total.
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Re: Journey of a child was moved to the Spiritual forum

Postby mom » Sun Jan 30, 2011 3:08 am

unfortunatly you can only view and follow if you are a registered member, and you log in.
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Re: Journey of a child was moved to the Spiritual forum

Postby HerMajesty » Sun Jan 30, 2011 2:57 pm

That's a shame. The thread did have many religious posts but also many unusual PN topics that should be visible to unregistered users, such as onset in childhood and neuropathic itch.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: Journey of a child was moved to the Spiritual forum

Postby mom » Sun Jan 30, 2011 3:27 pm

I would have to agree HerMajesty, not to mention it has more activity than 90% of the topics on the forum.
When I don't like what I see in print I usually just quit reading, but to take the choice to do so away is goes against the very freedoms my country was founded on.
I find it sad that others will not be able to see the journey.(on this site anyway) I believe there many children suffering in silence as mine was, with heart broken parents doing everything they know how ,all the while not having discovered PN yet.
Knowledge is power, and HOPE just took that power away for some by removing our journey from being accesable to the searching sufferer.
freedom of speech, freedom of religion??????
MOM
Last edited by mom on Mon Feb 07, 2011 4:44 pm, edited 1 time in total.
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Posts: 180
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Re: Journey of a child was moved to the Spiritual forum

Postby HerMajesty » Sun Jan 30, 2011 4:24 pm

Well the mods are have a hard job to do; somebody or more than 1 person might have complained to them. Our speech is free from government oppression but not from the mods censoring as they please on their own site.
I do think the neuropathic itch theme is very important in particular, because there is at least one "scholarly article by an authority" out there, don't know who because I ran across it pre-diagnosis when I did not know any of the names of the big PN physicians, that states in no uncertain terms, "if it's itch not pain then it isn't pudendal". This threw me off track for awhile and it needs to be discussed.
Also when I was a teen and had interstitial cystitis, my Dr's excuse for taking 2 years to diagnose me and meanwhile suggesting repeatedly that I was a psych case or sexually precocious, was that IC was "A disease for elderly and middle aged women". So the awareness of pediatric pelvic pain syndromes is also important.
But out of respect for the mods and the different directions they get pulled in, I think we might need to make sure technical discussions of these subjects are posted up elsewhere on the board. Vs. The alternative of arguing about their decision.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Journey of a child was moved to the Spiritual forum

Postby mom » Sun Jan 30, 2011 6:02 pm

HerMajesty,
I agree, there is no arguing their decision. I have an opinoin that it was an unfortunate decision. We are ALL entitled to our opinions.
It is unfortunate that instead of choosing to just quit reading about all the faith by MANY in the journey, that someone decided to exhuast so much energy complaing about it. It would have taken less enrgy and time to just exit out of the topic.
My faith will not be affected b/c of it though. And those who would have been able to benefit from the information we will get after the MRI and appt. with Dr. Hibner might loose out on valuable info.
MOM
Last edited by mom on Mon Feb 07, 2011 4:46 pm, edited 1 time in total.
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Re: Journey of a child was moved to the Spiritual forum

Postby Mod4 » Sun Jan 30, 2011 6:40 pm

Please note that the thread written by mom has now been reinstated into the announcements section so that it will be viewable for all to read and learn from; the content of this thread is invaluable and has been presented in a very formative manner by all who have contributed to the discussions therein.
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Re: Journey of a child was moved to the Spiritual forum

Postby mom » Mon Jan 31, 2011 1:08 am

Thank you for returning the journey.
My intent has never been to offend anyone with my beliefs.
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Re: Journey of a child was moved to the Spiritual forum

Postby mod3 » Thu Feb 03, 2011 3:44 am

Mom, Journey of a Child has been moved to the Welcome Center since it is not really an announcement. It is the introductory story about your daughter so the Mods decided the Welcome Center is the best place for it where it will be publicly viewable as you wish. We've been trying to organize some of the topics lately.

Sorry, the mods aren't perfect -- we are all volunteers and we are just trying to do our best. From now on, we will try to notify the original poster when an active topic is moved.
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Re: Journey of a child was moved to the Spiritual forum

Postby mom » Thu Feb 03, 2011 5:21 am

Mod3,
Thank you for the notification. Trust me I am far from perfect so I certainly would not have that expectation of anyone else.
Thank you for keeping the post visible.
MOM
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