My name is Patty. I am the mother of four boys.  I'm 32 years old and have suffered from ch, I believe, all my life.  I was dxed with ch not even 2 months ago. but, I think that I have had either episodic or cornic all my life.  I was always told that I had migrains, sinus infection, upper teeth pain, ear pain, etc. In 1999 I had a mri done, because the doctors could not find any way to relieve or explain my headaches. That mri did not show  cause for the headaches, or that I had Sinus infections. It did find an avm. Aterio-venus malformation, on the left side my atrery is connected directly to the vein instead of running through capillaries. I was born with it. An angipgram showed that it is a level one, stable and has not bleed. Why do I tell you this? So when I explain why I cannot take most aborts you know why. Because of the AVM, I am not able to tke the abortive meds that so many of you can. I also cannot take any of the prevents either. Lithum and depokate- one boxed my kidneys and the other my liver. Zyprexa caused me to develop type 2 diabetes. Predisone and DHE were the last tried and turned down because of the effect on my heart. Verpemal and Inderal I am deathly allergic to.
   In desportion, I started searching the internet, when the ain hit- reading and learning keeps me sane. In my seardhing I found this site. finally some where I can be understood. when I say it hurts only another sufferer and God really knows what I mean. Asking about o2, I learned about welders o2 and again I found hope. You see, my medicaid will not play for o2 for ch because my o2 sats do not drop during an attack.
  The last few days have been hard on me, but thanks to this site I have been able to make it. Now, you are probably wondering about my title and purpose for writing... 3 days after I joined I received my first pm, a very cool moment. It had no subject line, just the word: troll in the body of the letter.  I was very curious, but just shoke my head. I did not know the meaning of troll and so continued on.
 I found out the meaning of troll and it broke my heart. Junkie, somone not wanted or someone that doesn't fit in. because I now know what that pm meant, I canot stay as a member on this site. I can't tell you the heart ache that I feel. while this may seem petty, to me it is not. How can I pour out my heart, sarrows and sufferings to anyone knowing that those same things will be used against me to label me.
   Writing this good--bye post hurts me so much, I had to write it out at home first- so that I didn't ball at the liabary in public. On top of this I have just found out that my husband did not make enough for us to afford the o2 or other meds Herbs and vits. that I need to fight this thing down.  and it's raining a definate trigger for me.  What a time to lose all hope.
It's to bad that one bad apple ruins the whole batch. I will not namenames- the one who labeled me troll know who thaey are. to set that person straight, I DO NOT USE DRUGS!! and I very rarly use narcs. about once a month I give into the pain and take 5mg of pericet and only when the pain is so bad that I cannot function as a mother while my husband is at work.  And no It doesn't help much. Brings a 10 down to an 8. So if that makes me a Junkie, Then I am a Troll.
  I would like to thanks ch hell.  I left you an email. Thank you for the phone calls and all of the knowledge you shared with me. YOu were an answer to a prayer.
I would also like to thank ON MY KNESS- you are right, that is an excellent position to pray. Thank you for your greetings from south Idaho.
I will be pming dj now to request that my membership be closed.  good luck to all, I will keep you in my prayers.

Don't give up the ship because of one not a very nice person.   There are plenty of other good people here.  
Just ignore the dumb shit like most of us do.
                               PFD's On Ya
                                   JPC

A one-word PM weighs more heavily than the good wishes of many others?

I understand that you may have found the comment hurtful, but it seems to me that you're holding everyone on this site accountable for it.  Sorry, but that's completely unfair.

Like anyone else here, I can only control what I say to you--I cannot control what others may say or do.    

Do what you must--but if you don't want to receive any more PM's from a particular person, you can block them.  

You know you're not a "troll"--so blow it off, and get to know the other fine people here.  

Just my opinion--take it for what it's worth.  

All the best,

George

again where is the punchline.............. im sure this is where the jokes are and i read ur message waiting for the punchline and felt slighlty deflated after!!!!  :(

Hope u change ur mind and post a funny in here next time!!! :D

What's happening to this place recently?
Seems there are a lot of fights between members.
Off course I am thankfull to the people on the watch out for trolling, but aren't we seeing things as a community?
Give new ones a chance to prove themselves, without labeling them so soon as a troll.

And to the real trolls: what the hell is it you get from here? I don't get it.

Pataya, don't let anyone chase you away as long as you know you are sincere.

Pascal.

  Stick around ma dear.  Keep on huffin that o2.

                   Potter

This Topic was moved here from Funnies and Jokes by Mrs Deej.

This is a public forum and anyone can join and post.   One dumb ass sending you a pm is not a representation of what this board encompasses.   There are over 5000 members.  We would be naive to think that there are not some bad apples.  Stick around.  It will do some good.  It has for me.

Thanks Mrs deej!!!

Patty, please reconsider your decision. Do not let one person chase you off this board. There are countless people here who would give you the shirt off their backs to help another CH sufferer, me included.

You can PM me or e-mail at any time you wish, wether you need some support or just want to talk. Please stay. I will PM you my e-mail.

  Barry [smiley=hug.gif]

Patty,

I'm sorry about your ordeal, but one person do not speak for this entire group.

I say this because all of us should not be punished for what one individual have said. There are some really nice people on this board. People on this board have even saved lives, including mine.

My advise to you would be to forgive and ignore that individual and give the rest of us a chance.

You can come here 24-7, cry, moan, groan, laugh, pray or what ever... and there will always be someone around to listen and assist; and the best part is, it's free.

I can not promise you that your feelings will never be hurt again on this board, but through experience, I can promise you that the Good Ch's far out weigh A-- H---s.

Peace & Blessings
Ruthie

  I have just gone over and read your last 5 posts and I am at a loss as to why anyone would call you a troll.  Nothing you have said  was out of line or argumentative or... or.... or... or anything.

  There are loving, caring people here who bend over backwards to help others.  I realize you are scared, in pain and vulernable right now, but please do not throw away this family that you need because of one family member that is a black sheep.  Every family has one you know.   ;)

Patty, I'm sorry to see you go.  There are a few very judgmental people here.  I don't know what they gain from being so mean.  But it is very hurtful.  I can understand not wanting to make yourself vulnerable.  When you're in a place that's already hurting, it can be hard to see your way through the bad apples, I know that.  But there are so many wonderful people here.  I'm sorry you didn't get the chance to experience much of that.

I hope you continue to search the board knowledge, even if you are no longer a member.  And I hope that if you come to a place where you're feeling emotionally stronger, that you know you can rejoin.   [smiley=heart.gif]

((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

Laurie

Patty you've been treated inexcusably by a small minded, mean spirited scumbag who absolutely DOES NOT SPEAK FOR THE REST OF US!!!

Stay - and lets' help each other. There is stuff to be learned on both sides and new friendships to be forged.

I'm holding out a hand in friendship and I'm not alone, there are far more decent people here I'd move heaven and earth to help than there are the uglies - give us a chance!!

Helen

Ya, what they all said. Stick around. Seems there is a turd in every punch bowl.
all the best
the bb

Patty...............I understand how you feel, but I really think this "family" will help you so much, as it has me....................I just ignore any negative feedback here, try to stay away from any poison, and you will find you will have more friends than foes......................should you feel the need to talk, pls PM me and I will be more than happy to give you my number!
deb

:(

Mean people suck, Patty.  Please don't let one nasty send you off!!!

I started to visit this message board a couple of weeks ago and have learned so much...and actually learned what I needed most to learn, that there *are* people out there that truly understand and they are there to share what they know and to help, so in turn, when I am feeling better someday (soon, I hope!!!) I can use what I've learned to help someone else that is new.  A circle of hope :)

Stick around, please.

This one is easy!

Patty, who sent the PM?

If theres no answer its pure Bull-Shit!  ;)

And you are all falling for it!

I know who sent the PM...

Mrs Deej wrote on Nov 22^nd, 2008 at 12:06am:

I know who sent the PM...

if we asked real nice... would you tell us?

pwitty pwease  :-*

with warm regards,
Tony

Not even for a chocolate sundae...errr, well maybe!!  lol

I'll keep the blood on my hands for this one...

;)

Tony......offer her the biscotti....trust me "Mrs DJ"...I've had it before...OMG it's so worth spilling the beans!!!!!!!

Guiseppi

Oh Steph...what a DELICIOUS tease...it reminds me of when I was a kid on Christmas Eve...the anticipation was almost painful...with the full awareness that what I awoke to might be a HUGE disappointment!

I actually don't care who it was, cuz they got to live with themself...that this f@@K has to worry that they might be outed at any time...heee.heeee, that there is better than banning.

PLEASE...don't ever tell (well, maybe SOMEDAY, but not soon...)

and Patty, stick around sister....there's dang few of us out here, and we can't afford to lose any...

Best,

Jon

Mrs Deej wrote on Nov 22^nd, 2008 at 12:06am:

I know who sent the PM...

And did they get spanked for the misdeed? ;D

wrote on Nov 22^nd, 2008 at 1:12am:

Mrs Deej wrote on Nov 22nd, 2008 at 12:06am: I know who sent the PM... And did they get spanked for the misdeed? ;D

Why reward them for being foolish?  :)

with warm regards,
Tony

Hi all I am really nervous right now and very embarrassed to say that I just relized in the last couple of days what a narrow minded newbie I have been.  I have asked mrs. deej where that ignore button is and if yall will let stay will use it to filter out the bad and keep the good.   I did not know the extent of the love, and commitment that is here.  I had know idea what my post was going to do... I have read all of the post in general  post and in getting to know you... and so now I know what an a@# I was... crap my phone just rang and my bother is getting married today. who would have thunk it????  At the wedding chapel.  Even I had no idea.   Please accept my words  I will write more tommorrow.   Ppattya and please do not change the freedom with which all of you speak in reading your responses, I have learned that is where your powers of healing is in your words of passion, and compassion. If those words were policed they just wouldn't be the same.  got to run.   talk when I can

We were all newbies sometime.  This was not the first forum in which I participated, but I remember those days.  Didn't know the lingo, didn't know how things worked, the options, etc.  Dang - you figured out "PM" pretty quick!  Sorry it was so unpleasant at first!

Glad to hear you're not going to let one jackass run you off the boards!

Laurie   [smiley=wave.gif]

Patty, the golden thing about this site is the pay it forward principal. You get some help and we feel good for you. Then when you return the favor and help others yourself, we love ya!

Roland. 8-)

I may be a seminarian, but I know the value of breaking a few knees from time to time.  I gots me a brand new tire iron, just point me in the right direction ...

On a serious note, the toughest thing we can do is to forgive, especially when we are hurt so deeply.  I will continue to pray for you and for the poor soul who felt the need to utter such damaging words.  

May God continue to grant consolation and peace to you and your family.

So so glad you came back, Patty.  Imagine how many  people have left after the initial bad experience without coming back to very loving and caring members here.  Your pain is REAL to all of us, and most everybody is here to help and share.  I hope at minimum you'll pick up strength and emotional support here.........nobody but fellow sufferers understand this pain.  Many hugs to you.

i just thought of something that may give you a bit of a giggle ...

I've been called a troll for quite some time now, but it's in a different context.

I was born in the Lower Peninsula of Michigan.  Those from the Upper Peninsula (called Yoopers by us from the Lower) call the Lower Peninsula people "trolls" cause we "live under da bridge."

just a little bit of Michigan trivia for ya.

God Bless ya!!

dionysiusaeropagite wrote on Nov 22^nd, 2008 at 4:34pm:

i just thought of something that may give you a bit of a giggle ... I've been called a troll for quite some time now, but it's in a different context. I was born in the Lower Peninsula of Michigan.  Those from the Upper Peninsula (called Yoopers by us from the Lower) call the Lower Peninsula people "trolls" cause we "live under da bridge." just a little bit of Michigan trivia for ya. God Bless ya!!

I guess that makes me a troll then ;D

Good for you, Patty.

Welcome home.

Best wishes,

George

i just talked to patty and tried to give her some options, like a neuro specialist i see which is only an hour away from her.
as far as what i have read i say thanks to all for encouraging her to stay. even after a  rather ignorant, pompous and self absorbed person that likes to play doctor and feeds off  hurting other people to fill the void in there own life. to that person i will pray for you as it is obvious they need it.
patty is desparate for relief from the pain but is hindered by $$$$$
and complicated medical issues.  o2 is the something she really wants but beurocracy and $$$$ stand in the way.
i have made myself available to her as i live only two hours away.
maybe i can show her the kindness and love of a fellow afflicted ch'er
also teach her how to use the ignore list. 8-)

Quote:

I've been called a troll for quite some time now, but it's in a different context.

So have I,  Father Joe...so have I.

My troll staus is because I stretch.... to reach to five feet tall.  Last time I weighed myself I was 97 pounds.  Instant troll status by my very good friends around here who just love to laugh at me.    And ya know what?   I like it when they do. If they're laughing at me in good fun...they're putting their sense of humor where it belongs.  In someone's lap where it will be taken with a grain of salt and a good chuckle by me.   ;)  


As my good friend John bbzz says..."It's all good"

Linda is short???? :-?

Guiseppi

wrote on Nov 22^nd, 2008 at 10:05pm:

i have made myself available to her as i live only two hours away.

How kind you are!  Sounds like welder's O2 is the way to go for her.  Marc got a nice all-in-one transfill thingy.  My husband (DIY guy!) challenged the price of what Marc bought.  The end result wasn't THAT much cheaper than a ready-to-go unit, but everything works to refill my E tanks.  We got a 540 regulator through our local Craigslist, a real nice heavy duty Linde for $30.  I save my E tanks for getting out of the house and stay real close to the 80 cubic feet welder's cylinder strapped on a handtruck at home.  If Patty has somebody who has the basic knowledge of welding, a used cylinder can be found cheap also locally?  I live in a large city, so finding used stuff locally isn't difficult at all.  I think enough handy guys around here can set her up with welder's O2 relatively cheap.  Even without a portable tank, it's far better than no O2 at all.

Guiseppi wrote on Nov 22^nd, 2008 at 11:32pm:

Linda is short????

WOW!!!  

Ya learn something new every day!

And I was thinking that she was still seated ... Who knew she was already standing?

Chuck

Guiseppi wrote on Nov 22^nd, 2008 at 11:32pm:

Linda is short???? :-? Guiseppi

LMAO!!!! [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]

   Short people call Linda short. The best description of her I ever heard, was by a Chinese Circus Midget, who said she was verticly challenged. But those guys are kind of uppity, Just ask Chuck.
[smiley=smokin.gif]

Patty, first off, how are you today? How did the wedding go?
This thread alone should show you how the majority of feel towards you. 2 pages, 39 replies, and 544 reads. I would say you have some friends here now, me included. :)

  Barry 8-)

Patty, is your Arteriovenous Malformation located in your head or in the spine?  You say your kidneys and liver were "boxed ", so I'm wondering if your doctor(s) have made any suggestions on repair.

If in the head, you are most likely lacking a good oxygen exchange, right?  I have some good diagrams and info if you want it......just let me know.

You really need a good neurologist who has seen both cluster headaches and Arteriovenous Malformation (it's so rare that he may not have seen a actual case of AVM but should know about it). Ask questions about his knowlege of both conditions. You have a right to ask questions before you even see him...no use paying for a visit to someone who doesn't know.

I'm sorry that you are suffering so and hope that you can find a way to be able to get the o2.

Donna H.  8-)

Patty, I just read your post and i found it the most heartfelt post i have read in quite some time.
Please disregard any comments that seem strange, or hurtful, or any comments that are someones attempt at humour or sarcasm or whatever...as these are common risks associated with online forums...HOWEVER the value derived from the wonderful and caring people that post on here far outway the negative.
Sorry you had to experience one of the negatives.
Please continue to participate and make this an even better place to be.
Paul

Hi Patty.  Glad you decided to stay.  There are a lot of caring people here, as you  can see. Just ignore whomever is giving you crap- they aren't worth the aggravation!

The wedding went great!!! Finally, it's done!!! :D I'm doing ok.  Can't say I'm great. I can say that the beast is fighting hard, but I am fighting harder.  I will win.  With so much help I have no choice but to win!!! I just keep gathering more ammo.... the beast will run screaming for it's mommie.
 P

Patty:
if you get welders o2 call me i will come to cda and help you set it up and show you proper use and equipment.
try to see the neuro Dr Johnson in missoula , i found him via the o.u.c.h. website and he is wonderful and as far as medicaid (apeal and then appeal agin) print off o2 papers and research on the website and get letters from your doctors. do not let them (medicaid) push you around because your o2 need doesn't fit their preset algorithems witch are flawed anyway.
fight for it girl!!!!!!!
if i can help just call i am not far away from you. 8-)

Tanyana wrote on Nov 23^rd, 2008 at 5:37pm:

I can say that the beast is fighting hard, but I am fighting harder.  I will win.  With so much help I have no choice but to win!!! I just keep gathering more ammo.... the beast will run screaming for it's mommie.

You go girl!!!!   I like your style!!!!
With that attitude you'll kick the SOB to the curb.

Jacks 8-)

I just don't have the words to say thank you.  Those words just seem to short to explain how I feel!!  I will be getting welders o2 set up as soon as $$$ allows.  Will also be talking to my primary doc. as soon as he allows.  Because of medicaid I can't even see Dr. Johnson without my prim. dr.s ok. I guess I wont bash idaho seeing as how you live in idaho, but idaho especally north idaho does seem to be behind the times. I will continue to fight all involved from the beast to the government.  p

I've been called a troll for quite some time now, but it's in a different context

from one troll to another

Guiseppi wrote on Nov 22^nd, 2008 at 11:32pm:

Linda is short???? :-? Guiseppi

Yup, she's short . . . and you have a tiny  . . . little . . . .mustache!
;)

I can't even use the excuse that I've had a little Thanksgiving wine . . . .

:-*
(love you as always babe!)