A rant and a toast...

Here is a place for social chats with special attention to support and non medical discussions. We need a place to chill out, where we can distract from our pain and enjoy lighter moments, share a joke or funny moment with others.
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Nick
Posts: 17
Joined: Fri Dec 17, 2010 1:43 am
Location: Minneapolis, MN USA

A rant and a toast...

Post by Nick »

Dear Friends (or acquiantances if you prefer),

What a week it has been. In one of my last posts I promised that the next time I had a beer I would drink to your health. Well here I am, Friday night, on the couch, with a nice cold one goin' down so I intend to make good on that promise. I would also like to share a bit of what was on my mind today about who I am.

Who am I anyway? Is it my identity? I am a husband, son, brother, friend, musician, goof ball, video game addict, insurance underwriter, owned by a cat, and many other things that people tend to be. I have become a PN sufferer but that does not change the other things, PN can't have them! But these are only part of me.

Is it how I feel? I'm only 31 but I've had a chance to feel plenty of the things that come with being human. Happiness, joy, sadness, fear, depression, desire, anger, pleasure, downright weirdness, etc., etc., etc. I've been introduced to pain that I didn't think could exist outside of the pits of hell, and have come to find out it could be worse!!! I believe it is always okay to feel the way you do, you don't need to justify it to anyone. It could be argued that these sensations and emotions make up the whole of our existence. But that's not all either.

My brain was grinding on this for quite a while and I finally came to the conclusion that I am just me. Wherever I go, whatever I'm doing, however I feel, I am still me and no amount of pain or any diagnosis will ever take that away. God has given me this life; past, present, and future and nothing will ever change that. Now that that's out of my system on to the toast:

Here's to all who are struggling with pain right now
may you find relief quickly
may loved ones surround and support you
may the road ahead bring you kindness and compassion
may God lead you to healing and peace
when you are down may hands reach out to lift you up
when you are strong may you reach out to help others who are in need
and may you always remember who you are

Cheers! *clink*

Nick
Weeks to Months long episodes of pelvic pain that go in to remission since 2002. Primary complaint is constant rectal pain.
Diagnosed with Pudendal Neuropathy by Dr. Antolak Dec. 2010. Now using self-care.
Currently trying to find cause of neuropathy. Trying chiropractic treatment to address misaligned pelvis and trying to rule out other causes for pain before taking next steps in PN treatment.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: A rant and a toast...

Post by HerMajesty »

"cheers", you take your drink and I will pop my handful of pills, I can't mix em with alcohol but I'll clink my water glass to that :lol:
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.
Griff522
Posts: 314
Joined: Sun Oct 10, 2010 7:42 pm
Location: Michigan

Re: A rant and a toast...

Post by Griff522 »

Nick that was very eloquent. Are you sure you're really an underwriter? You think a lot deeper and express yourself much better than most men I know.
Last edited by Griff522 on Sat Jan 15, 2011 4:50 pm, edited 1 time in total.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:

Re: A rant and a toast...

Post by A's Mommy »

Awesome, Nick. If you wouldn't mind, I'd like it actually LOVE it if you could post your poem on my blog... or if I could have permission to repost it.
http://fighting-pne.blogspot.com

I want others (non-PNErs) to realize this disease is affecting everyone --- professionals, athletes, singers, songwriters, doctors, lawyers, engineers, you name it.

A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Nick
Posts: 17
Joined: Fri Dec 17, 2010 1:43 am
Location: Minneapolis, MN USA

Re: A rant and a toast...

Post by Nick »

HerMajesty: No problem at all! As an act of respect and solidarity I will be more than happy to have an extra drink for everyone who can't because their pain meds won't allow them to have one.

Griff: I'm sure I'm an underwriter, but I'm not so sure I'm a man. I ordered a chair cushion from the IC network and my email confirmation was addressed to "Mrs. Nick (insert last name here)", even though I ordered over the phone! Guess I shouldn't have let my hair grow so long...

A's Mommy: You have my express permission to use any and all of my post if you want to. I'm flattered that you called it a poem actually :D

Nick
Weeks to Months long episodes of pelvic pain that go in to remission since 2002. Primary complaint is constant rectal pain.
Diagnosed with Pudendal Neuropathy by Dr. Antolak Dec. 2010. Now using self-care.
Currently trying to find cause of neuropathy. Trying chiropractic treatment to address misaligned pelvis and trying to rule out other causes for pain before taking next steps in PN treatment.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: A rant and a toast...

Post by Karyn »

Excellent, Nick!
I mentioned in another post that I shant let you drink alone, so here's my virtual toast to you - fellow beer lover, our fellow PN'rs and your good wishes: Clink! :D
I'm very happy to you feel this condition hasn't changed who you are. I don't quite feel the same. I mean, I know I'm still me, but this has definitely changed me to some degree.
I think for the better in some ways and not so much in others.
With warm regards from your Friend,
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.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: A rant and a toast...

Post by HerMajesty »

Hey A's Mommy, how come I signed up to follow your blog and I don't get email alerts when you post? Isn't that what following a blog means? Or do I just think that because I am of the pre-tech generation?
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.
User avatar
A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:

Re: A rant and a toast...

Post by A's Mommy »

You know, I'm not sure... I'm new to blogs, too... you maybe have to set under your preferences that you check some box that says "email when new posts are added" or something like that.... I'll check it out from my end.

Thanks...

I'm having such a bad day.
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: A rant and a toast...

Post by HerMajesty »

I am sorry you are having a bad day :(

Don't check it out from your end, I will deal. I was obviously in a neurontin induced oblivion when I signed up as there is a "sign in" button and I don't even remember creating a password or anything, although I am sure it will work if I try a few of the usual.

The last thing you need is to be playing tech support to someone on drugs.
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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