Author Topic: Connecting on a Personal Level  (Read 10615 times)

Andy451

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Connecting on a Personal Level
« on: September 29, 2014, 04:31:32 PM »
For a while I have been striving to get a bunch of us together and meet in person, yet have not got around to organizing any of this. I have mentioned this idea to a few members and told Demo about it. If you object plz let me know.

We could strategize, relate, share stories and educate each other- getting a lot done. We all have a lot to offer, even while we're writhing around with POIS. If we could manage to organize that energy in person, as we have on this amazing forum, we may be able to do things we have always dreamed of. I have always yearned to personalize POIS because I do not always feel like I can relate to anyone because of the uniqueness and pain associated with this horrific syndrome. Putting a face on POIS is important. If we/you are not ready to show the world, I understand but, I believe we should at least be able to show our faces to each other and support/accept each other in a way that others may not be able to fulfill.

I propose we set up a couple of meeting places around the world/US so that we can get some localized groups together which would meet every 6months. We can make these events public for educational purposes or private for support and strategies. The logistics of such events would have to planned and agreed upon by multiple members.

If you feel comfortable listing your location or msging me, whichever is fine (remember this is a public forum). If you don't want to share at all, I understand.

In the US, we should probably meet in NY, LA, Dallas and Chicago- to cover as much as we can given this is a small community. About ten per meeting would be fine, but more would be welcome. Less and we may be spinning our wheels.

Over seas, as the community grows, we should pick 3 major cities on every continent that are separated geographically. Asia- 6. This community will grow and this will happen eventually, even if I do not try to organize this now.

Demo informed me that one of the other members of the forum has been collecting info on a/s/l as already. We can coordinate, share ideas and kick-start this thing.   

Let me know your feelings on the subject please. Questions, strategies and input are welcome and would help organization of such an event.

Thanks Guys! :)

37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Connecting on a Personal Level
« Reply #1 on: September 29, 2014, 08:27:43 PM »
Great idea, Andy.

Count me in for West Coast activities. NYC is possible too but only 1x per year probably :)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Connecting on a Personal Level
« Reply #2 on: September 29, 2014, 08:30:59 PM »
When I say NYC -- it's easy enough for me to get around the East Coast: Boston, D.C, Pa., etc.!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Connecting on a Personal Level
« Reply #3 on: September 29, 2014, 08:34:33 PM »

10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

poisioq

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Re: Connecting on a Personal Level
« Reply #4 on: September 30, 2014, 04:17:04 AM »
I like the idea.

For Europe I would suggest London, Berlin and Barcelona for their multiethnic nature.

Andy451

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Re: Connecting on a Personal Level
« Reply #5 on: September 30, 2014, 01:20:46 PM »
When I say NYC -- it's easy enough for me to get around the East Coast: Boston, D.C, Pa., etc.!

Demo we could do DC instead of NYC. We have to compile enough locations to see what would be easiest for the majority of ppl first and then try to settle for sure on one of the major cities anywhere. I was just giving examples of cites I thought would be suitable for our purposes..

I am close to NYC (about 20mins by car). I mention this area because it is the largest metro area (pop #s) in the country (tri-state), with the highest density in population, so there is bound to be resources and other men w/ POIS. I know that there are POIS guys in upstate NY, at least one in the city and Maryland from what I remember off the top of my head on the east-coast. Maybe one or two in New England..?

Btwn, every yr would be fine- as long as we could get organized and make the experience worth while- which I am certain we will.
37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Andy451

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Re: Connecting on a Personal Level
« Reply #6 on: September 30, 2014, 01:26:15 PM »
I like the idea.

For Europe I would suggest London, Berlin and Barcelona for their multiethnic nature.

poisioq

I like London, Berlin and Barcelona. Great choices. Let see where ppl are from if we even get anyone from those cites countries on the forum. I don't know but assume there are some already.

Perhaps we should focus on two or three cites to start. One in Europe, The US and South America. The language barrier is going to be tough to bridge while we are trying to organize just a single event. But, the brainstorming is great!
37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Nightingale

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Re: Connecting on a Personal Level
« Reply #7 on: September 30, 2014, 10:14:02 PM »
I like the idea of meeting physically, but why don't we also push for online meetings face to face? I know there must be an ideal platform to do group meetings for free??
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Andy451

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Re: Connecting on a Personal Level
« Reply #8 on: September 30, 2014, 11:14:38 PM »
I like the idea of meeting physically, but why don't we also push for online meetings face to face? I know there must be an ideal platform to do group meetings for free??

Good idea Nightingale.

That would be ideal to get antiquated before meeting in person, but also to have more regular meetings- while seeing each other. For one to one meetings, skype and google has a cam platform on their email. I know logitech has conference cam option, but that may come with a substantial fee. I will ask my brother, he wkd at best buy for yrs and may know a platform that is useful for multiple members. Also, I am buying a new phone soon and will inquire at the store.

Otherwise, one to cams are easy to use and can be set-up as soon as ppl share contact info with each other and set up a cam, which are inexpensive or come with most computers/phones at this pt..

Input for online meetings too- anyone?
37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Andy451

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Re: Connecting on a Personal Level
« Reply #9 on: September 30, 2014, 11:35:33 PM »
I am just going to throw this out here so that others feel more comfortable. If you don't want to post directly on the forum, that makes sense for privacy reasons. If you want to msg me your locations or one of the admins go right ahead...

I am from North Jersey- 20mins from NYC, so a meeting in NYC would be optimal for me.

and yes, My name is Andy.

37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Prancer

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Re: Connecting on a Personal Level
« Reply #10 on: September 30, 2014, 11:46:15 PM »
One day if I get cured from POIS, then maybe. Since communicating with POISers, especially demografx, Daveman, Nightingale, Pony (even though he's not active anymore), VS (most recently), Andy451, GoingLessCrazy, B_Daniel, B_Jim, kurtosis, Defsync and Chris, and prolly many others that I just don't remember right now, I've learned that you guys are so awesome. So maybe once we're all cured, that might be a pretty good idea (for me I would only do it if I am cured)!

Don't forget to add Hawaii to the list!

Andy451

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Re: Connecting on a Personal Level
« Reply #11 on: September 30, 2014, 11:51:53 PM »
One day if I get cured from POIS, then maybe. Since communicating with POISers, especially demografx, Daveman, Nightingale, Pony (even though he's not active anymore), VS (most recently), Andy451, GoingLessCrazy, B_Daniel, B_Jim, kurtosis, Defsync and Chris, and prolly many others that I just don't remember right now, I've learned that you guys are so awesome. So maybe once we're all cured, that might be a pretty good idea (for me I would only do it if I am cured)!

Don't forget to add Hawaii to the list!

OK Prancer.

Whatever feels comfortable man; I understand. Your awesome too, and the input and support of all of you guys has helped me immensely through the roughest time of my life. If you ever change your mind, just let me or one of the admins know.. :)
37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Prancer

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Re: Connecting on a Personal Level
« Reply #12 on: October 01, 2014, 01:10:17 AM »
OK Prancer.

Whatever feels comfortable man; I understand. Your awesome too, and the input and support of all of you guys has helped me immensely through the roughest time of my life. If you ever change your mind, just let me or one of the admins know.. :)

TY, and don't let it discourage anyone! I should add I'm only speaking for myself when I say I'd only do it as a celebratory event. Go for it straightaway whoever wants to! I can totally understand the need & desire to connect with fellow POISers and share experiences first hand!

Mike1234

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Re: Connecting on a Personal Level
« Reply #13 on: October 15, 2014, 07:57:29 PM »
I would be open to trying to get a group together.  This is a fantastic idea.  Another option would be to try to set up a call or "go to meeting."  I am very glad I found this site to connect with all of you.  Just starting to get active on her but really trying to be optimistic.  It is helpful to have others share what is working and not working with their situations. 

Thanks all!

Mike
Early 40's, sufferer for 5-8 yrs, headache, depression, night terrors, panic, cloudy thought and unclear thoughts at times, dry eyes, horrible fatigue, aches throughout body.  Typically lasts 3 days with day 2 being the worst day.  Symptoms get better at day 4 and 5. Gluten Free, exercise

Andy451

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Re: Connecting on a Personal Level
« Reply #14 on: October 19, 2014, 01:19:56 AM »
I would be open to trying to get a group together.  This is a fantastic idea.  Another option would be to try to set up a call or "go to meeting."  I am very glad I found this site to connect with all of you.  Just starting to get active on her but really trying to be optimistic.  It is helpful to have others share what is working and not working with their situations. 

Thanks all!

Mike

Great idea with the "Go to Meeting" Mike. That could be a useful tool in online meetings/conferences to start, as was mentioned by Nightingale earlier on this tread. Thanks for the specific platform though, it is helpful. I can msg everyone who is receptive once we have enough ppl who would like to participate. And we can set up a meeting in a month or two online first...?
37 yo M- POIS for 25yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/weights/situps) Low sugar diet. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

serotonergic

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Re: Connecting on a Personal Level
« Reply #15 on: November 08, 2014, 08:46:00 PM »
I'll be up for meeting you guys in person!  I'm in Pennsylvania. However, depending on the time of the year, I'll either be in the east or west part of the state.  So places like Pittsburgh, Philidelphia, and NY will work for me.  It just depends on the time of year

Nightingale

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Re: Connecting on a Personal Level
« Reply #16 on: November 10, 2014, 06:23:59 PM »
Ok, let's start making this happen.

Add me on Skype: thomasslowikowski

Yes, my name is Thomas Slowikowski :)

It's going to be easy to make a group, we can all join and then save the group for later: "Save group in Contacts" on the right side of the Group tab

Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

sameer7777

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Re: Connecting on a Personal Level
« Reply #17 on: November 10, 2014, 07:09:22 PM »
I LIKE THIS IDEA !!!!!!!!
pls don't expose me.
AFTER SEX/MASTERBATION (FLU LIKE SYMPTOMS)
1)BACK NECK PAIN GOES TO DOWN SPINE
2)NERVES LIKE SQUEEZED OUT
3)MORNING FEET NERVES PAIN
4)NASAL INFLAMMATION
5)BRAIN FOG
6)DEPRESSION
7)HIGH SUGAR LEVELS (TRIED INSULIN FOR 1 YEAR MAKE ME MORE SICK

Nightingale

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Re: Connecting on a Personal Level
« Reply #18 on: November 11, 2014, 08:50:12 PM »
Great Sameer! Do you have Skype?

I have already gotten a few people added to the group, please contact me! If you aren't comfortable with sharing your full name, you can change what is displayed in Skype in the Account settings (I think). Also, if you don't want to show your face you don't have to! You can simply be part of the conversation with your microphone!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

sameer7777

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Re: Connecting on a Personal Level
« Reply #19 on: November 11, 2014, 08:53:16 PM »
Yes give me the Skype group name how I can I in the group
pls don't expose me.
AFTER SEX/MASTERBATION (FLU LIKE SYMPTOMS)
1)BACK NECK PAIN GOES TO DOWN SPINE
2)NERVES LIKE SQUEEZED OUT
3)MORNING FEET NERVES PAIN
4)NASAL INFLAMMATION
5)BRAIN FOG
6)DEPRESSION
7)HIGH SUGAR LEVELS (TRIED INSULIN FOR 1 YEAR MAKE ME MORE SICK