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        New Message Board Archives >> 2002 Posts >> what the pain has taught me
        
(Message started by: iukid on Aug 14^th, 2002, 11:05pm)

Title: what the pain has taught me
Post by iukid on Aug 14^th, 2002, 11:05pm

Before CH's I used to fear pain and feel sorry when people I knew had migraines, lost body parts, gotten burned bad, gotten shot, etc.... but now I feel no sympothy for them. THat stuff doesnt hurt as bad and it only happens once most of the time. It has mad me hard. I personally no longer fear any other types of pain that I may come across. I guess its made me stronger

Title: Re: what the pain has taught me
Post by paul_b on Aug 14^th, 2002, 11:16pm

Stronger is good. Dealing with the anxiety of the onset of pain is tougher. I learned to have my soldiers at ready; meds, mind games, breathing exercises, showers (if possible), typing posts, supporting family and pets, coffee, and of course "you all". With an army like this, the Beast is just another enemy that must be battled.

Title: Re: what the pain has taught me
Post by nancyc on Aug 14^th, 2002, 11:49pm

Going thru cluster pain has made me more sensitive of other folk's pain...cause i know that people dont understand my pain...and i know how that hurts me..Maybe that is why i am a nurse...who knows..smiles,nancyc

Title: Re: what the pain has taught me
Post by Drk^Angel on Aug 14^th, 2002, 11:53pm

It's taught me not to expect other ppl that has never experienced a CH to understand what we go through.

PFDAN............................ Drk^Angel

Title: Re: what the pain has taught me
Post by Charlie on Aug 15^th, 2002, 12:39am

This level of suffering by so many has done nothing but reinforce my current belief in......very little.

If God wanted to convince us of his presence, he would have done a better job.

Really cranky old Charlie

Title: Re: what the pain has taught me
Post by BobG on Aug 15^th, 2002, 12:45am

Hey really old Charlie,

God isn't trying to convince us of anything.

But Satan is. And he's doing a great job of it.

Title: Re: what the pain has taught me
Post by Elaine on Aug 15^th, 2002, 4:31am

You have not learned very much then I am afraid iukid!
Until you are burned badly or shot , I don't figure you know their pain. If you can think of others pain don't expect them to think of yours. If you think a badly burned person only hurts one time you go to a burn unit and see and hear the crys of them. :'(

Title: Re: what the pain has taught me
Post by Charlie on Aug 15^th, 2002, 5:49am

God is all-powerful, always present, and always benevolent. Lots of people believe this.

If so, hell and satan cannot exist.

Charlie

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 8:07am

Funny thing iukid, for me the pain of ch has made me feel more empathy for anyone suffering any form of pain. it's not THEIR fault I have a painful disorder. And I am NO ONE to put measure against ANYONE's pain. Besides, that thinking is pointless.

I worked in ER and once saw a 5 year old child who was unconscious from cold medicine. Her mother was crying and begging for her to wake up. the fear and grief in that woman's voice will stay with me FOREVER. Lots of things I witnessed there put things in perspective QUITE EFFECTIVELY. :)

Title: Re: what the pain has taught me
Post by oringkid on Aug 15^th, 2002, 9:22am

I wouldn't go so far as burns and amputations, but like iukid this pain has made me a little harder on people who freak out over a torn cuticle or hangover headache or something like that.

Remember this may be the worst pain but it is also brief compared to the months and months of constant 24/7 pain that burn victims go through.

I have never been a very empathetic person. (Sometimes I feel like an alien LOL) But, I would not belittle anothers major pain because pain is relative to the person. What might not even phase me might send another to the ER and vice versa.

Just like here. Although Ch is the WORST pain I have EVER had. It seems that I have a very high tolerance for it. I know that my pain does not affect me as badly as a lot of you. I sometimes feel very out of place because of it. But, like I say it is relative to the individual.

So, what has the pain taught me? To love every millisecond that I am pf. See I also have other pain. Chronic neck pain (from the damn computer) terrible knee pain that sometimes gets REALLY bad. Almost constant lower back pain and now to top it all off I think I am getting arthritis in my hands. Oh happy day...

Most of the pain I can ignore and when the planets align just right I will get a few minute without any pain and that is bliss!

Without pain I guess I wouldn't appreciate the pain free times as much.

Sherry

Title: Re: what the pain has taught me
Post by echo on Aug 15^th, 2002, 11:24am

Pain has taught me to be conciderate and compassionate to others who are suffering. That their pain is real and their quality of live is being adversly affected.

Don't have much time for whinners however.

Ch pain is by far the worst I have ever experienced. A close second was when I had to white knuckle having a fingernail pulled out without the benefit of any injected pain blockers. That made me truly understand the pain that has been inflicted on so many prisioners of war to try to make them talk.

Title: Re: what the pain has taught me
Post by jimbo on Aug 15^th, 2002, 6:30pm

Well said Sherry! When ever I start to pity myself all I have to do is think back about 2 years and picture in my mind the sight of my son who was born a little over 1lb. and all of the things that he had to go through just trying to survive. It sure is amazing how a little baby can teach us so many lessons and not even know it! These HA'S have not made me hard, they have made me even more aware of other peoples pain. It may not be as severe, but it is pain nonetheless. I say lets not have hardened hearts (Unless someone is whining like a little girl over nothing) because someone has to put up with our pain as well i.e. loved ones, Hopefully they do not have hardened hearts towards us! If I had the choice between having HA'S or being in a wheelchair, I'd say "Bring on the beast". Look around, someone always has it worse.

Seeya,

Softboiled heart Jimbo.........

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 6:39pm

B4 ch i was an idiot. During ch I am an idiot. After cycle ends, i'm still an idiot. Period.
Glad I'm still alive and still an idiot. ;)

Title: Re: what the pain has taught me
Post by catlind on Aug 15^th, 2002, 6:49pm

I'd have to agree with Elaine. A burn patient suffers what is considered by many many pain management specialists to be the worst pain a person can endure. When we suffer a CH it's our trigeminal nerve, there are 2 branches of them that are specifically affected. Your skin and body have nerve endings everywhere, imagine CH pain covering your entire body inside and out.

What I've learned is that when a person says "Man does this hurt" I don't think to myself "have a child and talk to me about pain" LOL, I've learned that when my children cry because they stubbed a toe, to hold them and tell them I know how much that hurts, instead of saying "are you bleeding? are you dieing? No? then get over it". (guess I'm not the most compassionate parent in the world LOL) I've learned that just because you can't see a bone protruding from the skin, or a wound that is obvious, there can be pain that is beyond our comprehension for that person.

Along the years I've learned something else from another circumstance entirely, and that is that you can NOT compare one pain to another from one person to another. I can type on the computer with a kip 8, others are tearing their hair out. Pain is pain, and for each person who suffers pain, it is their pain and they have a right to feel it and a right to express in their own way how severe it is for them. It's like saying that physical abuse is less severe than sexual abuse. Abuse is abuse is abuse. Pain is pain is pain. Different forms, different personalities....it just can't be truly compared.

Cat

(wow, talk about a holier than thou post...someone smack me for that, and I hope no one takes offense, it's meant only for imformative purpose)

Title: Re: what the pain has taught me
Post by Not4Hire on Aug 15^th, 2002, 7:55pm

Cat..consider yerself smacked (not slamm(y)ed...or shaken....or stirred...) but what you (and Sherry) said IS *The Truth*......pain is subjective = not really measurable.

The Kip scale is useful, but not absolute. One person's *5* is another's *8* ......Really, only *1* "Life is beautifu"....la de dah... and *10* "Suicidal" ....where's my toetag.....have any absolute meaning. I, personally, must cop to having had 9.9999's but in truth, I could FUCKING NEVER take my own life....it's not mine to *take* any more than I could ever GIVE life or surcease from pain to anyone.

I feel sorry for iukid that your sympathy has *gone away* and I hope it comes back. I'm glad you are stronger.....you have to be to deal with this, but don't be *hard*....

I could take issue with each of these posts....charlie's is probably the hardest. I believe he is a Boddhisatva...one who came back to teach us what it looks like on the *Other Side*....and his post's about God and Satan are a zen koan........a riddle and a lesson.
(Den too, but he's whacked ;D.......)

For my part: Pain Has Taught Me .......that I'm just a wart on the ass of all the suffering that humankind brings on itself.... from it's evolution from a reptile brain to the crown of creation. My personal pain is just that..... I deal with it the best I can, armed with my knowledge and all y'alls support..... what more can each of us ask?

PF and SHUT THE FUCK UP!!!!

.....now, I'll put on MY kevlar shorts........ after re-reading.... this is REALLY holier-than-thou........ 8)

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 8:03pm

hey not4hire: wow! ya really knocked my sox on that cool blast of fresh air. i smell better already :D

PS: WHERE IS STINKO ??? ???
;D

Title: Re: what the pain has taught me
Post by don on Aug 15^th, 2002, 8:29pm

How can anyone who sufferers the pain we do not sympathize with the pain of others? Pretty selfish stand point. Pain has not made you stronger, it has made you insensitive. Being strong is casting off your own misery to feel for someone elses.

You don't need to fear pain. You need to respect it !

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 8:34pm

Next time General Cluster comes to town remind me to salute

Title: Re: what the pain has taught me
Post by Ted on Aug 15^th, 2002, 8:36pm

I thought the Indians killed General Cluster.

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 8:38pm

Snap out of it TED! I AM the Indians :D

Title: Re: what the pain has taught me
Post by Ted on Aug 15^th, 2002, 8:40pm

The whole team?

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 8:44pm

Nope. Just the ones that swig the whiskey, scream incoherently and ride painted poines around while swingin hatchets (or garden clippers)..... ::)

Screams ALOT.

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 8:45pm

poines is ponies in indian dribble :D

Title: Re: what the pain has taught me
Post by BobG on Aug 15^th, 2002, 8:45pm

Touche, Charlie.

Good One! :D

Title: Re: what the pain has taught me
Post by Ted on Aug 15^th, 2002, 8:48pm

I think I've taken you home from a bar before. ;-)

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 8:57pm

Doubtful. Last pick up - well, he married me. LOL. :D B4 that, well ted you was just a lil fella :D

So, whats with the Newsletter? Hmmm? Checked out the last one. Sure seems like a long time since last print? whatchathink?

Ponders at times........ :D

Title: Re: what the pain has taught me
Post by Ted on Aug 15^th, 2002, 9:06pm

Is that an offer to help with the newsletter? Still looking for volunteers. You are now officially on the spot.

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 9:13pm

i know Ted. Been working my way to this pint (i mean point) for some time ;)

The ting (i mean THING :D) is, I have read the newsletters. why so few and far between? Talk to me. Seems vague to me. I'm sorry. Don't mean to offend in any way! Would love to help and have chock full of experience. But, I don't notice too much of any kind of definitive direction in the writing. (I KNOW i'm gonna get my butt kicked but I mean WELL!!!) You can always e-mail me- maybe I can help-- maybe not. i simply can't tell from what I've seen. Wish I knew you guys better. Not easy over the computer! :)

Title: Re: what the pain has taught me
Post by Ted on Aug 15^th, 2002, 9:27pm

Well, I only worked on it for the first two of them. The second one I wasn't going to but was drafted. Then, seeing only one was done since that one I offered to do it again last month. And you're right with your critique of it. But when I do this I ask and ask and ask for volunteers and maybe, if I'm lucky, three people offer to help and a thousand people post that no one is doing anything for us in the same timeframe. In the original newsletter and in the article I opened the NL with I stated where the direction was going to go. Unfortunately, I wasn't able to ensure that would happen.
Jayacat2@aol.com if you (or anyone else) want to help.

Title: Re: what the pain has taught me
Post by Not4Hire on Aug 15^th, 2002, 9:40pm

Yep...Ted.......this thread has turned into *Newsletters and the Days of Our Lives*....deserves it's *OWN* thread...... I'm still available to help with this.... hadda turn down a nomination to the OUCH board... Lord knows I don't wanna job that's just a heartbeat away from bein' a REAL DEAL......... but then again, maybe I'm one of the three you refer to.......

...trying to be PROactive ole N4H......... ;D

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 9:43pm

Okay Ted. You are right of course. there is much thought here but no one to put direction and purpose. And can't be done alone! I will e-mail you to further explore possibilities. As far as I can see, the newsletter has huge potential. The secret is putting it out every MONTH. and after each month, review and follow up. An effective newletter can do so much.

I'm at Kimskitchen529@aol.com. Don't be hesitant. Even if NO newsletter comes of it, we can communicate back and forth and WHO KNOWS, sumpin might just WORK!

Now, what more can ya ask for! :D Probably gonna get ALL SORTS A E-MAIL!
::)

Title: Re: what the pain has taught me
Post by Ted on Aug 15^th, 2002, 9:50pm

Hey Steve. You definitely were one of the people I was refering to. And unturn down your nomination. You'd be good at that too.
Kim. You've spoken a mouth... keyboardfull here.

Title: Re: what the pain has taught me
Post by kim on Aug 15^th, 2002, 10:01pm

Screams Alot, Talks Alot, etc, etc, etc. ;D

Let's see what happens :)

Title: Re: what the pain has taught me
Post by jko on Aug 15^th, 2002, 10:05pm

I wish I had a dollar for every time I've had people say things like "I know what your going through, I get migraines" or "I get tension headaches, I know how it feels" Bull Fuckin' shit!!!! I'm sorry my friend but you don't have a Goddamn clue what the pain of a CH is like, stick an IV needle into your eye socket and pump it full of hot water then bring it to a rolling boil and maybe you'll understand, now do it once or twice a day for about 6 months.
I on the other hand have no idea what it's like to be a severe burn victim, lose an appendage, get shot, have a severe muscle disease, lose a child, lose a spouse etc. Obviously pain is relative to the individual and to the situation, thats why a support group like this works, we do understand.
The old axiom "I was sad because I had no shoes until I met a man who had no feet" is a quaint sentiment however the fact that someone elses pain is greater doesn't lessen the severity of my pain, it only serves to increase my pain level because now I have empathetic feelings for them that add to my emotional load.
All my life I've been a borderline empath, very sensitive to what other people are feeling and over the years I've had to learn to put up walls to protect myself from the emotions of others, if I didn't I'd be depressed or crying all the time, but I think that the pain of CH has taught me that everyone has their own demons in life to fight, this is mine, you have yours and no, I don't want to trade. JKO

Title: Re: what the pain has taught me
Post by Charlie on Aug 15^th, 2002, 11:04pm

Rats Ted:

Last time I waited until it was too late to work on the thing, now I feel guilty ??? If you can tell me what to do, I'll work on it. Just don't expect me to bright.

Damn whiners :D

Really useful old Charlie

Title: Re: what the pain has taught me
Post by oringkid on Aug 18^th, 2002, 5:23pm

Ted, did you get my email?
What exactly do we want this newsletter to do? What can it do? What kinds of things (articles) do we want in it? Who is its target audience?

Sherry

Title: Re: what the pain has taught me
Post by Ted on Aug 18^th, 2002, 6:07pm

Hey Sherry,
If you're the one who sent me an e-mail last week with an embedded object and a file with the subject heading that was something about an "assignment" it did make it to my mailbox. But when I don't recognize the e-mail address (and I don't know yours) I usually delete anything with something embedded and/or a file attached. If that wasn't you, however, no. It never got to me.
We want this newsletter to educate ourselves and the public who might happen to stumble across a copy as well as the medical community. The NL is also for cluster artwork (pictures, poems, short stories, etc...) for the people not interested in reading the articles (and for those into both) who can get an idea from the art and also so sufferers can relate to it as well. It's also to keep the membership abreast of what OUCH is working on/has accomplished and maybe if the committee chairs will send me that info THIS time (not to put them on the spot now) that will be done better. My opening article in the first NL might explain it better if this is to vague.
So, if that mail last week was from you can you send it again, without the file and embedded object? Thanks, Sherry. And welcome aboard?

Title: Re: what the pain has taught me
Post by pjbgravely on Aug 18^th, 2002, 10:22pm

Posted by: Charlie Posted on: Aug 15th, 2002, 6:49am God is all-powerful, always present, and always benevolent. Lots of people believe this.

If so, hell and satan cannot exist.

Charlie

Charlie, God is all Loving, becouse of this he gave us and the angels free will to turn against Him. Satan and 1/3 of the angels left heaven becouse they thought they could do it better. We also have free will to believe or disbelieve.

Title: Re: what the pain has taught me
Post by Charlie on Aug 19^th, 2002, 6:52am

Title: Re: what the pain has taught me
Post by oringkid on Aug 19^th, 2002, 7:42am

Ted, my email had "Ok Ted, I am ready for my assignment(s) (this is not a virus, I promise, Oringkid)" as the subject.

I use incredimail and it uses stationery. When I send an email to someone whose email does not support the stationery, it comes as an attachment.

I will send again. Also, I have Norton antivirus that checks for viruses in incoming AND outgoing mail.

Sherry

Title: Re: what the pain has taught me
Post by pjbgravely on Aug 19^th, 2002, 8:23pm

Well.....

An all benevolent, all powerful and always present god will not demand worship as it would be unnecessary. A satanic creature would never have been created, nor will such a benevolent god need to play with his creations. All powerful means just that.

Mean old Charlie

Charlie, God does not demand worship, nor does he need it, He receives it becouse of what he has done for us. God didn't create evil, evil is simply the lack of God as darkness is a lack of light. Satan became evil when he the most beautiful angel thought he was better than his creator. I do not understand why God has allowed some of us to endure this horrible pain caused by satan and his demons but I know there is a plan and reason to everything that God does. Paul B.

Title: Re: what the pain has taught me
Post by Charlie on Aug 19^th, 2002, 10:33pm

If (and that's the thing) he's all good, all present, and all powerful no form of evil or deception would be necessary or possible. IF all those three things are true.

This stuff can be fun but soon they're going to tell us to shut up. 8)

Take care.

Charlie

Title: Re: what the pain has taught me
Post by nancyc on Aug 19^th, 2002, 11:23pm

This pain has taught me....to live each pf day i have to the fullest...wish i could do that when i am getting hit but unfortunately, i have not gotten that far....but today because i am pf...i am enjoying all life has to offer me...in fact, don and bill, i ate lobster today...lol. :Dnancyc

Title: Re: what the pain has taught me
Post by Drk^Angel on Aug 19^th, 2002, 11:58pm

STFU with the theological BS!!!

This has been a public service announcement paid for by the Clusterheads Against Theological BS. Thank you.

PFDAN........................ Drk^Angel

Title: Re: what the pain has taught me
Post by debbie4278 on Aug 20^th, 2002, 12:14am

Cat,
Can you really be on the computer with a kip 8???????

I can't function at all with an 8. I couldn't even make a decision. I usually have 12's though. And am just beside myself.

Deb

PS
Ree, thanks for the words. ;)

Title: Re: what the pain has taught me
Post by debbie4278 on Aug 20^th, 2002, 12:18am

PSS
Angel,
I second your motion!!
Take the debate to Barbara Walters.
And form a committe for the newsletter.
Front page article "What the pain has taught us..."
And forward copies to every neurologist in the world.
Just a thought.....
Deb :D

Title: Re: what the pain has taught me
Post by Ree on Aug 20^th, 2002, 2:49am

ok this newsletter sounds cool...Dont forget me I write too,from a supporters point of view that is....

if you are looking for a supporters corner IM IN...

Title: Re: what the pain has taught me
Post by SFChris on Aug 20^th, 2002, 10:23am

Okay - a comment on the theoretical BS

"I do not understand why God has allowed some of us to endure this horrible pain caused by satan and his demons but I know there is a plan and reason to everything that God does. Paul B. "

I for one, refuse to surrender my pain to a/the 'devil', or for one minute believe that satan can control my biology. Why bother even taking medications, if your pain is caused by some otherworldly entity? Just sit back and let the invisible evil run amok...

Sorry for the rant - but I've got a headache.

Title: Re: what the pain has taught me
Post by pjbgravely on Aug 20^th, 2002, 4:54pm

Sfchris, Good point! I guess that life with CH's has changed my theology and I am Mad As Hell with whatever is stopping me from doing anything outside this summer. I do not blame God so I blame Satan even if he is not at fault. I believe in medicine but don't understand why we need to take it. Feeling a little funny after stopping the beast with Imitrex.

Title: Re: what the pain has taught me
Post by NancyMcFree on Aug 20^th, 2002, 5:58pm

Wow, I am truly blow away by some of the comments made here .... and truly heartwarmed by others. While I suffer, and intead I do suffer I like other people on this board know that you cannot compare one persons pain to another. It all depends where you are at when the pain hits. I for one can definitely say that a burn victim probably suffers more pain than any of us. 20 years ago my father in laws house burnt to the ground. My brother-in-laws fiance hung from the side of the house while it burnt, afraid to drop; proably from frear that she would kill herself. Too bad I never got to ask her why she never let go. For days we vistited her in the burn unit to where she was flown via lifeline in Baltimore. We watched her struggle for life and then beg to die in just about in the same sentence. They pulled the plug on her after 4 days of suffering ....... I think we can all say that after 4 days of our pain, death is still not welcome. I think for her it was. At least I hope so. For the rest of us here I wish PFDAN and if you can't get them ........ just remember .......someone around the corner always does have it worse.

Title: Re: what the pain has taught me
Post by Elaine on Aug 20^th, 2002, 6:40pm

All and all Pain taught me I have a great Family and Friends that have tried their best to understand my clusters and have been by me every step of the way for years. My family for 20 years. They haven't left me.
I learned that when I see some with a headache no matter what kind, to understand that they can't think much less function durning one. I find that if I don't take the time to understnad their Pain , they won't take the time to understnad mine. That is why I don't get upset when someone says I have migrains. I let them know how bad I feel for them and I share med stories and headache stories. After all most of our meds are migraine meds.
The main thing I have learned is to deal and that they won't kill me. That THE PAIN WILL STOP BUT IT WILL ALSO RETURN. I have learned to be prepared and be ready. I learned to be thankful for the painfree times and not take it fr granit. I have learned to care more.
Having clusters suck! But I learned and feel I am a better person because of the Pain.
Nancy M Your post hit my heart Hard! Your friend was blessed to have you by her side. I know you will carry her close always.

Title: Re: what the pain has taught me
Post by pjbgravely on Aug 20^th, 2002, 8:21pm

Thank You Elaine, Your post has shown me something about my pain that I didn't see. I am also reminded of a Star Trek movie, I think it was V when the renagade Vulcan offered to remove Kirk's pain and Kirk responded By saying that his pain made him who he was and removing it would change him beyond repair.