Raising money & hiring help

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Raising money & hiring help

Postby Quilter 2 » Thu Oct 27, 2011 6:53 pm

Hi everyone;
Concerning the public charity. I've been thinking about this idea for quite sometime, and now I would like to put it out there for the Mods and the rest of this wonderful group of people.
My story in a nut shell;
"Dr. Karyn", yes, that's what I call her! is coming with me to Dr. Conways for the pre-op orientation. I know she has done this for others. Also Dr. Conway"s office has called her to do it for someone. My idea was, if the charity ever had enough money, would it be possible to hire 4 people to cover North, South, East & West to go with very nervous people like me? Someone who is very knowledgeable with the procedure and will probably remember more during the meeting than the nervous and scared patient. Karyn has been a god send to me and she would be great at it. I have no idea if she would do it, but others might. I realize there would be a lot of factors to consider, insurance, plane tickets, ect, but maybe it could work.
Another idea that I don't think was mine, but can't remember where I heard it, was a walk-a-thon to raise money. I know us PN'ers are not going to be doing a marathon, but some of us could walk a little, plus our families and neighbors would probably help. If I knew how to get this rolling, I would do it after my hopefull recovery. I would do anything to help this very supportive site.
Just a thought or two. What do you all think?
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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Re: Raising money & hiring help

Postby Karyn » Thu Oct 27, 2011 7:50 pm

Doreen,
You are such a thoughtful person! I think the world of you for many, many different reasons - your willingness to help others is one of them. I do have to say though - you give me waaaaaaay too much credit. I'm so not a wealth of medical information. Most of the time, I'm walking around just like everyone else, going "WTF?!?!??!" :? All I've got is my own experience and the experiences of others who are near and dear to me.
I think trying to raise money for the community via a walk-a-thon sounds like a great idea. You're right .... provided friends and/or family members are the ones doing the walking. Otherwise, those pledge donations would have to be pretty hefty! Like: Hey Doreen! Sure ... I'll pledge $100 for you to walk 100 feet! :lol:
I'm so very honored to have had the opportunity to meet you and the others I've gone to Dr. Conways with, or visited at St. Joe's. I consider myself one of the most fortunate, blessed people in the world. Not only have I met some truly wonderful people, but I'm so close in location to Dr. Conway. I don't mean to sound like I'm bragging, but it's more that I'm GRATEFUL for my proximity to him. I've spent the last couple of years following our community members from one end of the country to the other and then some! I'm in awe of them! These are truly the bravest of the brave and I don't know how they do it.
This whole PN(E) thing is scary. The pain, the uncertainty, all the doctors, travelling to places you're not familiar with and not knowing anyone when you get there. I would have loved to have a friendly face greet me when I went to OKC last year. Someone who understood what I was going through and why I was there. Sure would've kicked the anxiety level down a notch! ;) So, I'm really glad I can be that someone for someone else.
I can't wait to see you again, Doreen! Everything is going to be fine. YOU'RE going to be fine!!!
Lots of love,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Raising money & hiring help

Postby Quilter 2 » Fri Oct 28, 2011 12:40 am

Karyn;
Oh great, now you're trying to be a comedian!! Well send the check, because I think I walked a thousand feet today :lol: You give yourself way too LITTLE credit.
Seriously, I didn't mean for the person to give advice. That could bring on all kinds of trouble. Just someone to take notes and remember half of what was being said. Someone who has been through it already. Our old friend Patty called me today and she said she would like to help with something like that. She had her husband, but many don't have anyone. While the doc is talking to me, I'm usually in great pain from the 4-5 hour drive, my mind is thinking about the cost, checks to write while I'm gone from home, the weather,( 2 mountain ranges to cross to get to Conway, winter is not fun), my family worryng about me and on and on and on. Oh and lets not forget the correct makeup to wear while in the hospital :roll: Not everything goes with hospital green!!
You're the best.
Dor
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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Location: North East TN

Re: Raising money & hiring help

Postby Celeste » Fri Oct 28, 2011 1:56 am

Google "patient advocate".
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Re: Raising money & hiring help

Postby Violet M » Fri Oct 28, 2011 3:25 am

Doreen, I'm afraid we have quite a ways to go before HOPE could hire anyone (we are currently all volunteers) but your idea of a Marathon is a great idea. This would probably have to be something that local pudendalites arranged in their own communities but it could be done worldwide all on the same day if it was coordinated properly. Maybe the funds raised could go toward research or raising awareness of PNE as these are two of the primary goals of HOPE. The website fees are now paid up for 3 years.

Karyn, you sound like a wonderful, caring person. It's awesome that you are there for people who need you. ;)
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 Karyn » Fri Oct 28, 2011 1:35 pm

Thank you, Doreen and Violet. I think some kind of fundraiser would be fantastic for this group. I'd like to see the money go to people who can't afford flights and/or hotels. Maybe even cover a doctors appointment, if you don't have insurance to cover it. Some kind of application process would have to be implemented, though. There's no way I could ever accept money from fellow PN(E)'rs. It would be nice to have a contact person in the vacinity of each of the "more travelled to doctors". I am the contact person for anyone who needs support while seeing Dr. Conway and I'm happy to do it!
Yes, Doreen! I completely agree with you about having someone with you at the doctors. Someone who understands what you're going through. A second set of ears and note taking is very helpful. It's usually very intimidating when the spot light is you! You bring up a very good point, Dor. I agree with you that there really is a need to have some one help out. Maybe others will volunteer to lend support to travelling patients?
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Raising money & hiring help

Postby Violet M » Sat Oct 29, 2011 1:34 am

Karyn, we have an application for patient assistance on the website already -- it's next to the donations button on the home page. We have to follow strict guidelines due to the IRS requirements. Some of funds HOPE raises will go to patients who are having financial difficulties.
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 kathyd » Sat Jan 07, 2012 10:02 pm

Hi
this post is to Karyn Doreen Violet and everyone,
just wanted to say thank you for your concern for fellow patients..It would be wonderful to have someone like you to be with on a docs visit... Many of us of are so tapped out from explaining our conditions a zillion times to blank faced med personnel that by the time we get to a knowelegable doc or PT we appear or present like a nervous wreck...Years of un -relieved pain will do that! And if you appear nervous, I believe your credibility will drop in the practitioners eyes.. altho it depends on the doc and how truly compassionate they are..
I would love to get involved in an awareness raising activity in about PN/ IC painful bladdered and all pelvic pain...
Ignorance is rampant on that subject... I had a rude relative over the holidays comment that I will be get well whenI am "ready to let go of my pain"...When I told her she need to walk a mile in my shoes she was highly insulted.
She has been trying to encourage me to "Work Out at the GYM" ...insisting its the cureall!
...you can bet she hasn't even googled the word IC or PN.. These experiences within our own families really hurt.

My poor hubby is tired of accompanying me and tapped out emotionally himself... Would love to find out more about patient advocates...couldn't find much when I googled
You gals are to be congratulated for your kindness
Kathy
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Re: Raising money & hiring help

Postby MovinCA » Tue Jan 31, 2012 10:56 pm

Doreen,

Your walk-a-thon idea is awesome—for fundraising, and increasing awareness of PN. We're so fortunate to live in a time where marathons, 5Ks, and other fundraisers are such a big part of our culture. Just yesterday a friend of mine asked me to participate in a locally organized 5K to support a foundation in honor of a young girl with a terminal illness. Not only did I agree to participate, but I was prompted to research the cause associated with this 5K, increasing my awareness of the disease. I really liked the idea of many people organizing walk-a-thons or 5Ks in their local communities, all on the same day.

I would be willing to organize one in my area. As a fellow person with PN, I’ve been wanting to do this for years. The task has just been a bit daunting….but if I knew that there were other people out there just like me organizing events like this across the nation, I would feel that strength in numbers.

Thanks so much for bringing this up! Any other takers/potential organizers interested in this idea? :D
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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Re: Raising money & hiring help

Postby MovinCA » Thu Feb 02, 2012 6:15 pm

Hi Everyone,

This might not be the right spot to do this, but I wanted to thank you for this website. I've been having a really bad flare this week and reading other people's posts and stories has been so helpful. I'm also thinking of going to Dr. Weiss in San Franciso...who I found on this site. Just wrote him a long e-mail last night. Seriously, 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

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