Raising money & hiring help

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Re: Raising money & hiring help

Postby Violet M » Sat Feb 04, 2012 3:02 pm

Good luck with the 5K, Movin. I could walk a 5K but definitely couldn't run one!

It might be a good idea to do some research on Dr. Weiss -- someone here might be able to give you more info about him. He does a lot of nerve blocks (unguided) and physical therapy and personally, I'm not too keen on the idea of a lot of nerve blocks because I know people who have gotten worse from them. If you are in the SF area, you might want to check out PT's Stephanie Prendergast and Liz Rummer or one of the other PT's on this list http://pudendalhope.org/node/63#CA before going the nerve block route.

Take care,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Raising money & hiring help

Postby MovinCA » Mon Feb 06, 2012 8:03 pm

Hi Violet,

Thank you so much for your advice and information. I was having a really bad flare last week and thought that maybe I should research a more aggressive approach, but I think I was blinded by the pain. I live in Southern California, and that would have been quite the trip. I'm fortunate to have a wonderful physical therapist nearby, and hadn't been in to see her in awhile. Today she worked on me and I'm already feeling some improvement. It's the worst flare I've had so far, but I need to keep up with my exercises and management as well.

With regards to the 5k idea, I'm going to work up to it slowly. My goal would be to have a small fundraiser in my area and then build up to something on a larger scale. Have people held small fundraising events for pudendalhope.org before? I was thinking perhaps something like approaching a restaurant to donate a portion of their dinner service for one night to this organization or something along those lines.

Thanks again for your information and help!
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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Location: California

Re: Raising money & hiring help

Postby Violet M » Sat Feb 11, 2012 3:13 am

MovinCa, I'm sorry to hear you had a bad flare-up. How do you manage to exercise with PNE? It scares me because exercise is what got me into this mess. Please be careful and don't do anything that makes you worse.

You have some great fundraising ideas. We have not done any local community fundraising so far -- I guess it's difficult with all of us so scattered and feeling like you are the only person in your city with this illness at times. Mostly we have relied on our website for online donations. I would love to see members get involved with local fundraising though.

One of my goals in the future is to assist docs with research grants, etc. but we aren't quite to that point yet -- still have several other goals we are trying to reach first.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Violet M
 
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Location: United States

Re: Raising money & hiring help

Postby MovinCA » Thu Apr 19, 2012 4:34 pm

Hi Everyone,

I know I haven't posted on this topic in awhile, but I am happy to say that with the help and encouragement of Violet and the support of the Board (thank you so much!), I am going to embark on my first effort to raise money for HOPE.

I will be walking in a local 5k on July 15th, and raising donations online through my blog at www.walking4hopepn.com or blogspot.walking4hopepn.com. If you are thinking of doing something like this, feel free to send me a private message and I'll be happy to provide some support and tips.

Thanks again to Violet and HOPE for all of the support!

:) Movin
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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MovinCA
 
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Raising money & hiring help

Postby MovinCA » Thu Apr 19, 2012 5:08 pm

...and I forgot to mention something. If you would like to dedicate a donation to someone, I'll be wearing the names of dedicatees (is that a word? :) ) around my neck during the 5k walk for donations of $25 or more.

Thank you!
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
User avatar
MovinCA
 
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Raising money & hiring help

Postby helenlegs 11 » Thu Apr 19, 2012 7:34 pm

Thanks for this MovinCA. So many people can talk about doing something to help :oops: and others just get on and do it!! Love your donations page and all that you have said to explain PN and your situation.
Wishing you every success :D
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Raising money & hiring help

Postby MovinCA » Thu Apr 19, 2012 10:04 pm

Thank you so much, Helen!

~Movin
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
User avatar
MovinCA
 
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Raising money & hiring help

Postby Violet M » Fri Apr 20, 2012 4:47 am

Hi Movin,

I would love to see a video of you -- or at least a photo of you in your jogging attire. :lol: If you send me one I'll post it on the homepage if you want.

Hey, I couldn't get the link to your blog to work. Any ideas?

Thanks for all you are doing!

Violet M
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5459
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: Raising money & hiring help

Postby Violet M » Fri Apr 20, 2012 4:57 am

PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5459
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: Raising money & hiring help

Postby MovinCA » Fri Apr 20, 2012 10:10 pm

Hi Violet,

Thanks so much! That's a great idea. I've been debating on the whole photo thing....but I think I'll go for it. I'll take one in the shirt and send it over to you.

I'll have to check on the link. It reroutes to the walking4hopepn.blogspot.com, but sometimes it doesn't work. Thanks for letting me know so I can check on it. I think I'll change my signature just to reflect the blogspot address until I can get the other one to work a little better.

Thanks again!

Movin
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
User avatar
MovinCA
 
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

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