Question:
This weekend was one of the life changing ones ever. Although i regret not sharing enough about myself. It wasnt that i didnt want too, it was because i couldnt. I knew i couldnt without crying. I cry easily.
I had gotten P at 12, but i remember only 4 or 5 spots, and they were gone by 14, help of injected steriods. I spent my all my years P free until i was 20. THats when it came back large and in charge. Out of control, i didnt know how to take care of myself, or what to do. I started becoming anti-social. All those "friends" i thought i had, were never there, i remembered that lonley feeling. I was convinced (until this weekend) i was alone. PA came at 22, i couldnt move, i had peopel constantly ask me why i was limping, moving so slowly, why i had small blood stains on my shirt.. bleh bleh bleh! I just wanted to scream, rant, rave and make them all go away. I hated who i was and how i felt. I remember that year. I had just showered and was looking at my naked body in the full length mirror. I couldnt look at myself anymore, i punched my mirror and watched all the shards shattered. I didnt have any P on my hand, after the trauma to my skin, i did. BLEH!
I remember trying to commit suicide once. I remember downing a few bottles of pills, what and how much, i forgot. Remember laying down in my bed, in my nice clothes, so i wouldnt be a mess when the EMTs came, whispering my last goodbyes and finally closing my eyes. I dont know what made me get up, but i did, i ran to my bathroom, and made myself throw it all up. I was hanging over the edge, scremaing at myself, wondering why i couldnt go through with it. Anything as got to be better then the pain i was going through right now. I was weak.
Ive never really accepted my P or PA... they were just there, i mad up excuses for them everyday, i bypasses discussions about them, i pretended they wedrent there. After so many treatments that didnt work, hopes that died and skin that got worse. I learned to stop caring.
Last nov. i was at my worse, 95% covered and PA almost everywhere, i couldnt move, i didnt walk for almost 5 weeks. I knew i was alone, but for some reason, now it hurts even more, I wished someone was around, to understand me. I lvoe my friends and family, but they kept telling me it would be ok.. i couldnt believe them. HOW COULD THEY KNOW?? They didnt.
In March, my DR was telling me about ENBREL and the success it was having, another med, another bubble popped, i was sure. I was tired. I knew i had depression as well, i couldnt make anything right anymore. That same month, my good friend Kelly commited suicide. I loved Kelly, she and i had similiar trials. Being Bi-Polar, she couldnt control half the things that happened to her, between the both of us, we could've opened a pharmacy with all the meds we were taking. But she understood, and she didnt judge me. She's gone, i hated her for so long, hated that she left me, and how she couldnt handle the stress of everyday. Hated she couldnt wait for that better day to come, she took the shitty way out. Lastly, i hated that she did do it, and i couldnt when i tried. I started Enbrel a few days later.
Now, i stopped thinking i was weak, the Enbrel worked wonders. Im glad i kept fighting, looking for that better day, even though it was long in coming. Its finally here. This weekend, being around everyone. All different shapes, colors, degrees of P, PA, and remission. I finally didnt feel alone anymore. I remember talking to Rhonda (gumbygirl) and that wave of understanding hit me. I started to cry. I knew i would cry this weekend, i didnt think it would be so soon.
This weekend between the drunken bar/beach filled nights and the days spent in the workshop, I got to know everyone. Im greatful to all of you, your smiles, your encouraging words, your understanding, your wild dancing, your putting up with me.
The nights spent in someone else's room, eating pizza and getting a show (that i missed.. DAMN IT hehehee), running around the warm SD beach at 3am, trying to hide the beer from the cops in front of the 7-11. Manhattan in a can. The nipples i felt up through out the entire weekend (eric, yours was still the BEST *wink wink*)
Everything is still a whirlwind in my head, im sure it'll sort through one of these days. But i still have this feeling of family around me, i never thought id be so greatful for the chance to feel apart of something.
edit: thanks to you party people, i was only able to get in about 7 hours of sleep this entire weekend. NEXT YEAR: kisu... dancing?? YOU MUST! i dont care if its not your thing!
im so glad brenda you had so much fun.
richard
Brenda,
I am so happy you had such a great time at the conference, and thank you for sharing your very personal story with us. I believe there are many of us, who have considered that very scary step, but pulled back for whatever reason. Being here today, and apart of this family of support, is justification enough there is more to life than p. I am truly glad you found the strenght you need at the conference. I know how much it meant to me last year to attend in Chicago. I don't believe I have ever had such a great time in my life.
Brenda is one of the most shy people I have ever met. I was trying all weekend to get her to come out of her shell.
I am just kidding!!!
For those of you who have never met her, she has a zest for life and is so outgoing and friendly.
I am glad we met. You really bonded with our P family and shared the same feelings that a lot of us have. That is the ability to hang and just be yourself with folks who have walked a mile in your shoes and do understand. Thats what it is all about in my book.
Be well,
Steve
I tell you Brenda, no dry eyes here...and if I had heard that story in SD...I'd have been raiding the tissue box!
I had no idea the trials you have overcome with your PA, I have always been pretty expressive with my experience with P and have often come to tears in telling my stories...for example, even when I was telling one of my colleagues at work about the weekend, the waterworks came on...
It was such a wonderful weekend, and even though I had a few obstacles to overcome to get there--the transmission fiasco--, I wouldn't trade it for the world!!!!
Diana
steve: im totally shy!
di: i had the lotion, waiting for you to flare up girl! i was ready! i wish i could've shared it all in person vs behind the computer.. but honestly, i could say those words withour crying! oomg!
Snob (thats my name for you)
I have a whole lot to say -but I didnt want too much time to pass.
I am on hour # 14 at work and have no business writing you anything except to remind you you are cool-ass.
(incase you ever "forget")
xoxo
Melissalynn
I think that you came a long way this weekend!!! Of course, you made me look like a meanie because when you told Rachel that I made you cry, she immediatly thought I said something bad to you. Geez - what a friend Rachel is to assume the worst!!!
You really are a fantastic person - so outgoing and gregarious. Please do not forget that you are NOT alone. We are all in the same boat - we are just in different stages of acceptance. Although I still get very, very angry about this disease once in a while, generally I accept it for what it is. I can not control the situation (having this disease), I can only control how I react to it.
I hope this conference made you realize that having "P" is not a badge of shame. It is what it is - a part of you. Accept this, and move on.
Most important - SHARE YOUR KNOWLEDGE! Educate people. Don't act like it doesn't exist. Like I told you - people fear the unknown more than anything else. Your disease is something unfamiliar to most people. They wonder if they will "catch" it from you. If you don't explain what you have, people automatically fear their own mortality. I can guarantee that the reaction that you get from people will be far different (and filled with more compassion) if they are educated about psoriasis.
We have all felt like victims but the true healing comes from when we turn our "victim" attitude into that of an "educator" and shout from the rooftops that we have psoriasis, so what, here's what it is, now let's get the party started!!!
One of the most important moments in my entire life came when I went to the Dead Sea a year and a half ago and meet so many people just like me. It truely changed my life. I will never forget the feelings of acceptance and the realization that I was not alone.
You, also, are not alone. You have all of us and, more importantly, you have everyone else that you have not met yet that suffers from psoriasis and whose lives YOU can change. Changing their lives, however, requires you to be more open about it with not only yourself but with others.
You are so outgoing so I know that you have it in you to be more open about this. No one who met you in SD could probably fathom that you keep things like this in (although, per our conversation, it seems like you do).
Enough of this...where is Eric? His body parts are calling your name!!!
Wow, that really was the sweetest thing. You all are getting me SO pumped for next year :) I'm glad you had such a wonderful time. I'm sorry to hear everything that you have had to go through, but believe me, you are not alone in your trials. Keep up the good attitude and don't let yourself get down, we're all here for you :)
Renae
renae: im totally pumped for next year as well!! i cant wait! i was saying to di how i wished you were here this time around, cus you're soo mad chill and i wanted to meet you!! Next year mamas! fo shooooo
rhonda: friggin aye, you're going to make me cry.. AGAIN! but i told rachel green (hehe, i have to say her full name) that it was a good cry ;) His body parts calling out my name huh?? ooomg! stop playing with my emotions that way! eric is pretty cute, when he's sober and not scared of me ;) He's a shy cat, we should leave him alone now. hahaha poor guy, i bet his ears are burning as we speak.
He he he, the amount of alcohol it would take to make me dance is past the threshold for alcohol poisoning and blindness, so I don't think I'll be dancing any time soon.
Sorry to hear you went through so many tough times. I know how you feel though, I'm sure everyone in this forum does. I've also gone down the un-fun path of self termination, and it wasn't pretty. But aren't you glad you stuck through it? You wouldn't have met all those groovy people!
Anyways make sure you keep me up to date with your surgeries, because I know you can use the support. Scalples are scary.
^^ kisuuuuuuu!! are you on AIM right now?? AIM ME FOOLIO!!! im bored.
Brendalynne,
I cannot WAIT to see you again in Sept!!! :D You are AWESOME, and we are going to set the west coast party standards!! ....watch out, NJ / NY!! :eek: :p
Kim
Brendalynne,
I cannot WAIT to see you again in Sept!!! :D You are AWESOME, and we are going to set the west coast party standards!! ....watch out, NJ / NY!! :eek: :p
Kim
Oh Paaleeaase!
It has been tried and never even close to duplicated!
Hmmmmmmm...
Wait till I'm out there in Arizona! We just might be some stiff competition!!! :cool:
I had gotten P at 12, but i remember only 4 or 5 spots, and they were gone by 14, help of injected steriods. I spent my all my years P free until i was 20. THats when it came back large and in charge. Out of control, i didnt know how to take care of myself, or what to do. I started becoming anti-social. All those "friends" i thought i had, were never there, i remembered that lonley feeling. I was convinced (until this weekend) i was alone. PA came at 22, i couldnt move, i had peopel constantly ask me why i was limping, moving so slowly, why i had small blood stains on my shirt.. bleh bleh bleh! I just wanted to scream, rant, rave and make them all go away. I hated who i was and how i felt. I remember that year. I had just showered and was looking at my naked body in the full length mirror. I couldnt look at myself anymore, i punched my mirror and watched all the shards shattered. I didnt have any P on my hand, after the trauma to my skin, i did. BLEH!
I remember trying to commit suicide once. I remember downing a few bottles of pills, what and how much, i forgot. Remember laying down in my bed, in my nice clothes, so i wouldnt be a mess when the EMTs came, whispering my last goodbyes and finally closing my eyes. I dont know what made me get up, but i did, i ran to my bathroom, and made myself throw it all up. I was hanging over the edge, scremaing at myself, wondering why i couldnt go through with it. Anything as got to be better then the pain i was going through right now. I was weak.
Ive never really accepted my P or PA... they were just there, i mad up excuses for them everyday, i bypasses discussions about them, i pretended they wedrent there. After so many treatments that didnt work, hopes that died and skin that got worse. I learned to stop caring.
Last nov. i was at my worse, 95% covered and PA almost everywhere, i couldnt move, i didnt walk for almost 5 weeks. I knew i was alone, but for some reason, now it hurts even more, I wished someone was around, to understand me. I lvoe my friends and family, but they kept telling me it would be ok.. i couldnt believe them. HOW COULD THEY KNOW?? They didnt.
In March, my DR was telling me about ENBREL and the success it was having, another med, another bubble popped, i was sure. I was tired. I knew i had depression as well, i couldnt make anything right anymore. That same month, my good friend Kelly commited suicide. I loved Kelly, she and i had similiar trials. Being Bi-Polar, she couldnt control half the things that happened to her, between the both of us, we could've opened a pharmacy with all the meds we were taking. But she understood, and she didnt judge me. She's gone, i hated her for so long, hated that she left me, and how she couldnt handle the stress of everyday. Hated she couldnt wait for that better day to come, she took the shitty way out. Lastly, i hated that she did do it, and i couldnt when i tried. I started Enbrel a few days later.
Now, i stopped thinking i was weak, the Enbrel worked wonders. Im glad i kept fighting, looking for that better day, even though it was long in coming. Its finally here. This weekend, being around everyone. All different shapes, colors, degrees of P, PA, and remission. I finally didnt feel alone anymore. I remember talking to Rhonda (gumbygirl) and that wave of understanding hit me. I started to cry. I knew i would cry this weekend, i didnt think it would be so soon.
This weekend between the drunken bar/beach filled nights and the days spent in the workshop, I got to know everyone. Im greatful to all of you, your smiles, your encouraging words, your understanding, your wild dancing, your putting up with me.
The nights spent in someone else's room, eating pizza and getting a show (that i missed.. DAMN IT hehehee), running around the warm SD beach at 3am, trying to hide the beer from the cops in front of the 7-11. Manhattan in a can. The nipples i felt up through out the entire weekend (eric, yours was still the BEST *wink wink*)
Everything is still a whirlwind in my head, im sure it'll sort through one of these days. But i still have this feeling of family around me, i never thought id be so greatful for the chance to feel apart of something.
edit: thanks to you party people, i was only able to get in about 7 hours of sleep this entire weekend. NEXT YEAR: kisu... dancing?? YOU MUST! i dont care if its not your thing!
Answers:
im so glad brenda you had so much fun.
richard
Answers:
Brenda,
I am so happy you had such a great time at the conference, and thank you for sharing your very personal story with us. I believe there are many of us, who have considered that very scary step, but pulled back for whatever reason. Being here today, and apart of this family of support, is justification enough there is more to life than p. I am truly glad you found the strenght you need at the conference. I know how much it meant to me last year to attend in Chicago. I don't believe I have ever had such a great time in my life.
Answers:
Brenda is one of the most shy people I have ever met. I was trying all weekend to get her to come out of her shell.
I am just kidding!!!
For those of you who have never met her, she has a zest for life and is so outgoing and friendly.
I am glad we met. You really bonded with our P family and shared the same feelings that a lot of us have. That is the ability to hang and just be yourself with folks who have walked a mile in your shoes and do understand. Thats what it is all about in my book.
Be well,
Steve
Answers:
I tell you Brenda, no dry eyes here...and if I had heard that story in SD...I'd have been raiding the tissue box!
I had no idea the trials you have overcome with your PA, I have always been pretty expressive with my experience with P and have often come to tears in telling my stories...for example, even when I was telling one of my colleagues at work about the weekend, the waterworks came on...
It was such a wonderful weekend, and even though I had a few obstacles to overcome to get there--the transmission fiasco--, I wouldn't trade it for the world!!!!
Diana
Answers:
steve: im totally shy!
di: i had the lotion, waiting for you to flare up girl! i was ready! i wish i could've shared it all in person vs behind the computer.. but honestly, i could say those words withour crying! oomg!
Answers:
Snob (thats my name for you)
I have a whole lot to say -but I didnt want too much time to pass.
I am on hour # 14 at work and have no business writing you anything except to remind you you are cool-ass.
(incase you ever "forget")
xoxo
Melissalynn
Answers:
I think that you came a long way this weekend!!! Of course, you made me look like a meanie because when you told Rachel that I made you cry, she immediatly thought I said something bad to you. Geez - what a friend Rachel is to assume the worst!!!
You really are a fantastic person - so outgoing and gregarious. Please do not forget that you are NOT alone. We are all in the same boat - we are just in different stages of acceptance. Although I still get very, very angry about this disease once in a while, generally I accept it for what it is. I can not control the situation (having this disease), I can only control how I react to it.
I hope this conference made you realize that having "P" is not a badge of shame. It is what it is - a part of you. Accept this, and move on.
Most important - SHARE YOUR KNOWLEDGE! Educate people. Don't act like it doesn't exist. Like I told you - people fear the unknown more than anything else. Your disease is something unfamiliar to most people. They wonder if they will "catch" it from you. If you don't explain what you have, people automatically fear their own mortality. I can guarantee that the reaction that you get from people will be far different (and filled with more compassion) if they are educated about psoriasis.
We have all felt like victims but the true healing comes from when we turn our "victim" attitude into that of an "educator" and shout from the rooftops that we have psoriasis, so what, here's what it is, now let's get the party started!!!
One of the most important moments in my entire life came when I went to the Dead Sea a year and a half ago and meet so many people just like me. It truely changed my life. I will never forget the feelings of acceptance and the realization that I was not alone.
You, also, are not alone. You have all of us and, more importantly, you have everyone else that you have not met yet that suffers from psoriasis and whose lives YOU can change. Changing their lives, however, requires you to be more open about it with not only yourself but with others.
You are so outgoing so I know that you have it in you to be more open about this. No one who met you in SD could probably fathom that you keep things like this in (although, per our conversation, it seems like you do).
Enough of this...where is Eric? His body parts are calling your name!!!
Answers:
Wow, that really was the sweetest thing. You all are getting me SO pumped for next year :) I'm glad you had such a wonderful time. I'm sorry to hear everything that you have had to go through, but believe me, you are not alone in your trials. Keep up the good attitude and don't let yourself get down, we're all here for you :)
Renae
Answers:
renae: im totally pumped for next year as well!! i cant wait! i was saying to di how i wished you were here this time around, cus you're soo mad chill and i wanted to meet you!! Next year mamas! fo shooooo
rhonda: friggin aye, you're going to make me cry.. AGAIN! but i told rachel green (hehe, i have to say her full name) that it was a good cry ;) His body parts calling out my name huh?? ooomg! stop playing with my emotions that way! eric is pretty cute, when he's sober and not scared of me ;) He's a shy cat, we should leave him alone now. hahaha poor guy, i bet his ears are burning as we speak.
Answers:
He he he, the amount of alcohol it would take to make me dance is past the threshold for alcohol poisoning and blindness, so I don't think I'll be dancing any time soon.
Sorry to hear you went through so many tough times. I know how you feel though, I'm sure everyone in this forum does. I've also gone down the un-fun path of self termination, and it wasn't pretty. But aren't you glad you stuck through it? You wouldn't have met all those groovy people!
Anyways make sure you keep me up to date with your surgeries, because I know you can use the support. Scalples are scary.
Answers:
^^ kisuuuuuuu!! are you on AIM right now?? AIM ME FOOLIO!!! im bored.
Answers:
Brendalynne,
I cannot WAIT to see you again in Sept!!! :D You are AWESOME, and we are going to set the west coast party standards!! ....watch out, NJ / NY!! :eek: :p
Kim
Answers:
Brendalynne,
I cannot WAIT to see you again in Sept!!! :D You are AWESOME, and we are going to set the west coast party standards!! ....watch out, NJ / NY!! :eek: :p
Kim
Oh Paaleeaase!
It has been tried and never even close to duplicated!
Answers:
Hmmmmmmm...
Wait till I'm out there in Arizona! We just might be some stiff competition!!! :cool:
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