|
||
|
Title: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 11:20am I have never had a pity party re clusters and the profound effect it has had on my life...but I've had many "pissed off" parties...and still do. Now that Im in this community...Im experiencing anger. Anger at the people who didn't care, or believe me, who contributed to the near total destruction of all that I love. I will not go into depth...but my life was destroyed by just a few individuals who didnt have the patience to give me a little time to work things out having this conditon...nor did they care...and WITNESSED me having many attacks. Watching Chuck's video during an attack...I just wept and wept and wept....AAAH. I am livid...does anyone else ever feel this way or do I need anger management.............SHERRI >:( |
||
|
Title: Re: I AM PISSED OFF.... Post by Lobster on Apr 14th, 2007, 11:27am If ever there were an affliction that would warrant a 'commune' type of community it would be CH, IMO. Most people would simply prefer not to deal with us. So we should all just party together. Picture a 365-day-a-year DavCon. /I vote for Wisconsin //and the name 'Hedonism North' ;;D ///and a three-pipe plumbing system... hot/cold/O2 |
||
|
Title: Re: I AM PISSED OFF.... Post by Redd on Apr 14th, 2007, 11:33am I could see it... I wonder how much they would want to buy Schmeekle Reserve? [smiley=laugh.gif] |
||
|
Title: Re: I AM PISSED OFF.... Post by Callico on Apr 14th, 2007, 11:54am Sherri, I understand your feeling, but I don;t think people for the most part are malicious in their treatment of us, they just don't understand and most are to lazy or to self-centered to care to find out. We suffer a malady that has no outward symptoms other than when we are going through an attack, and many think we are putting on an act or at the least dramatizing the pain for attention. Sometime watch people around someone in a wheelchair. They will walk out of the way to avoid having to speak to the person, or will totally disregard him/her if in a group. People tend to be uncomfortable around that which they don;t understand or relate to. Turn your anger into something productive or it will eat you up. Use it as a fuel to drive you to educating the public and to see others who have similar situations and reach out to them in support. Jerry |
||
|
Title: Re: I AM PISSED OFF.... Post by E-Double on Apr 14th, 2007, 12:04pm on 04/14/07 at 11:54:34, Callico wrote:
Perfect! Now go help others :-* |
||
|
Title: Re: I AM PISSED OFF.... Post by ClusterChuck on Apr 14th, 2007, 12:15pm Sherri, that is all in the past, hun. You are with family now. Let it go. We understand ... ... BTW, I think you are just being a drama queen. After all, it is JUST a headache ... [smiley=finger.gif] [smiley=moonwiggle.gif] [smiley=nopity.gif] [smiley=crackup.gif] [smiley=winkkiss.gif] Damn wimminz!!! WDGCH (Women Don't Get Cluster Headaches) Chuck |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 12:41pm Hey Chuck...suck an egg. I had a feeling I would have to clarify....what I have I lost will take time to get over. Im not lying awake at night or kicking dogs...I must feel this in a healthy way...thirteen years is a long time...I am very passionate period. And about educating the world re CH'S...very much so. I do it at EVERY OPPORTUNITY THAT PRESENTS ITSELF and do it anyway..to possible save someone from jumping out of a window during an attack or the frustration and solitude...we don't have to be alone anymore. What a blessing to be able to say that....I love all of you. S |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 12:46pm I have read an account of an individual jumping out of a window during a hit...I can see why certainly...cant' say I havent thought of pain diversion at least a thousand times...but that's exactllly what I hope we...WE...will put to an end...and just KNOWING all of you...helps stop the self mutilation and destruction. Thank God. |
||
|
Title: Re: I AM PISSED OFF.... Post by JeffB on Apr 14th, 2007, 12:48pm I say f_ck 'em! ;) |
||
|
Title: Re: I AM PISSED OFF.... Post by pieface_49 on Apr 14th, 2007, 12:55pm Sherri, one thing I do know is my attitude changes when in cycle. Things change chemically and I guess I could say I am a biatch. Quick to complain. I live by myself and keep to myself, especially when in cycle. On the other hand, I have to work and am around people while in cycle, 9 hours a day. I am sure they get sick and tired of hearing me. They know I suffer and have endured hits at work, sometimes leaving not to be around others for during a bad hit. I have more run-ins with people while in cycle. Sometimes during those run-ins, I become overly boisterous (outspoken). Two weeks out of cycle, my attitude change is very noticeable. I am so much calmer, which is an understatement. During cycle we were asked where I work to come up with ideas to save the company money. One of my suggestions was "Evaluate Upper Level Salary". Needless to say, no one would even comment on that post out of 30,000 or so employees. Pieface_49 <------ Lucky to have a job :O Donnie |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 1:02pm Hey Lobster... I love your suggestions...especially "three pipe plumbing"...I actually pondered having o2 put into the house behind the walls...just lilke at the hospital..with the valves coming out of the wall...you'd just have to have your mask handy (when WILL these o2 companies get that 10-15 liters of air CANNOT effectively come out of a canula????Duh.)But it is a really nice thought to live in a community where WE'RE THE MAJORITY...instead of the minority.... :) |
||
|
Title: Re: I AM PISSED OFF.... Post by Brewcrew on Apr 14th, 2007, 1:08pm on 04/14/07 at 12:48:43, JeffB wrote:
[smiley=finger.gif] Sometimes you can really come off as an ass! ;) |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 1:10pm Donnie, That suggestion is hysterical "Reevaluate ...", and Im sure you are edgy...when anyone doesnt feel well...whether it's CH'S or not...and some people seem to never feel good.... :-[ I am chronic...so if I am having a particulary bad day or week...I go into seclusion. I have learned to tell people Im not having a good dayl, etc....however Im not constantly edgy...it's part of my everyday life to adapt to this condition..Im a vet by now...but PMS...I cant seem to master... :-/ |
||
|
Title: Re: I AM PISSED OFF.... Post by Brewcrew on Apr 14th, 2007, 1:20pm Sherri - I have learned, over the 16 years I have entertained the beast, that anger - for the most part - is wasted energy. Especially when it's anger generated by hatred of others. By allowing them to have this effect on you, it puts them in control. YOU are the one who should be in control of your emotions. As difficult as it seems sometimes, the natural anger you feel toward another should be channelled into something positive. Anything positive. Allow yourself to feel the anger deeply - without reacting to it - then, once you realize what's happening, tell yourself that you will not allow another to have this kind of control over your soul. Then clean the bathroom. Or the kitchen. Or go to a batting cage and practice your swing. Anything to channel the anger into something positive. Otherwise, they win. |
||
|
Title: Re: I AM PISSED OFF.... Post by ClusterChuck on Apr 14th, 2007, 1:25pm VERY well put, Brewcrew, buddy!!! on 04/14/07 at 13:20:23, Brewcrew wrote:
Now if you're looking for kitchens, bathrooms, etc, to clean, the key to my home, is under the door mat ... Chuck |
||
|
Title: Re: I AM PISSED OFF.... Post by Yorky on Apr 14th, 2007, 1:49pm on 04/14/07 at 11:20:02, sldrswyfe wrote:
my guess is , your anger is the same as mine (we will never get our cause across......because they are called headache , so people do not understand our pain. it must get posted every week, someone venting "why is it termed just a headache...ffs" ps sorry to hear about your hubbys extended service (it will fly by....now that you are home with us ( ::) ) HE WILL BE SAFE. anyway its back to music, to try and explain your anger....AT THE NON BELIEVERS. http://www.youtube.com/watch?v=4GHyXAkoHb4 dont get mad cause they wont listen (i had my 1 , hospital trip, last week.....i left feeling humiliated, and i still do....aaaarrggggghhh im friggin angry now ;) the words in this song , listen 4 "in the end...its only..round and round" dont try to explain....you are bashing your head against a brick wall i do beleive if we could acheve, a better term for our condition...then... maybe if it was called ? vasculor/hyperthalamus?...... then maybe people would under stand ? like some one said ....f..k emm. |
||
|
Title: Re: I AM PISSED OFF.... Post by BarbaraD on Apr 14th, 2007, 2:21pm Sherri, I'm not a nice person to be around when I'm having a bad day (I'm chronic so I have them often), but I've learned to just ignore "nasty" people - they're just stupid, ignorant, pigheaded.... oh well, you get the idea. It is hard to explain our condition (even after someone sees us getting hit) to someone who's not experienced it firsthand. My son and daughter-in-law (who is an RN for goodness sakes) who've seen me go thru this for years don't have a clue -- just one of Mom's little headaches - oh by the way mom, what's for dinner? :P I've quit even getting mad at them - not worth the effort. People are just not comfortable around illness. When we know someone has cancer and is terminal, we tend to stay away from them because it makes US uncomfortable - never mind that they might need the support. When my brother was dying with cancer we talked about this a lot and had a good laugh (my brother and I both had a wierd sense of humor) about it. He used to laugh about being contagious. His best friend was still trying to trade baseball cards with him and he was still holding out for high prices. But most of his friends were at the funeral, and were sad there, but forgot to visit while it would have benefited him. It's just human nature. Here we can laugh at ourselves and give support to each other and know what we're talking about. And here we know we're not alone.... Hugs BD |
||
|
Title: Re: I AM PISSED OFF.... Post by Rosybabe on Apr 14th, 2007, 2:35pm I think I am passed the point where I don't care if they care ...as long as they are out of my way when I am having a hit, like when they ask you if you already took some tylenol for the pain or they mention that they hurt like that before (????)...make me wish they all dissapear at once... ;) |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 2:47pm Thanks York...Thanks Barb...I want you to know that having you all is HUGE...a huge relief...and it doesnt seem as important anymore that the "non-afflicted" have to understand...as long as someone does. The mere thought of explaining the pain and how intense and frightening...exhausts me. Knowing, to the extent at just how hurt and angry I am, is new to me. I knew I was angry and hurt...just not how badly. Something has brought it to the surface...Im just glad I can tell this to my "species"...who have the inclination to actually know what the hell I mean. I am not a cry baby, I am not stupid...I am very capable, competent and intelligent. I am tired, when it came to CH's, being thought of as otherwise. The familiar look....I can HEAR what they're thinkig by now. And it's good to know you all experience the same. And Barb...being asked "hey what's for dinner??", etc. after a bad hit...as if you stubbed your toe. If I want attention and affection...I have no problem coming out and asking...and they know that...I didn't need an ice pick to the forehead as an excuse. Thanks for all of your support....My sincere thanks....Sherri :) |
||
|
Title: Re: I AM PISSED OFF.... Post by Yorky on Apr 14th, 2007, 4:51pm I knew I was angry and hurt...just not how badly. Something has brought it to the surface...Im just glad I can tell this to my "species"...who have the inclination to actually know what the hell I mean. I am not a cry ..baby what do you mean "species" female ? http://www.youtube.com/watch?v=r5Cz8_VSwU8 [smiley=laugh.gif] [smiley=laugh.gif] |
||
|
Title: Re: I AM PISSED OFF.... Post by JeffB on Apr 14th, 2007, 4:53pm ;;D P.S. The Brewers suck! |
||
|
Title: Re: I AM PISSED OFF.... Post by Skyhawk5 on Apr 14th, 2007, 6:03pm I think it makes us so angry because we tend to believe that others should and could understand if they wanted to. But in reality what we suffer is just unimaginable even to us. Just another ugly fact of life. PFDNS to all, Skyhawk5 |
||
|
Title: Re: I AM PISSED OFF.... Post by Brewcrew on Apr 14th, 2007, 6:05pm on 04/14/07 at 16:53:45, JeffB wrote:
If they don't make the playoffs this year, I will be agreeing with you. |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 7:57pm York by "species"...I mean clusterheads...who other than you guys could understand? Absolutely no one. And Hawk...that's an excellent point...you are right...it is unimaginable and unthinkable....even to me...and I feel it nearly every single day. The important thing is I have a whole bunch of people that DO...finally. That is such a weight off of my shoulders...I have already found comfort in all of you...when I was having a day of being misunderstood and told it was me...blah, blah, blah. It's better to just let it go...I know that...it just really feels bad sometimes. I'll get over it. Love all of you...S |
||
|
Title: Re: I AM PISSED OFF.... Post by Mosaicwench on Apr 14th, 2007, 8:08pm on 04/14/07 at 13:20:23, Brewcrew wrote:
Then how come our kitchen and bathroom are still dirty? |
||
|
Title: Re: I AM PISSED OFF.... Post by Skyhawk5 on Apr 14th, 2007, 8:19pm My wife told me today that it took a few years of my CH before she really began to understand. Makes me feel a little sad but I understand and she totally does now. I believe my Dr. does too. Keeps me alive. Thank God. Not being understood does cause me stress but I've learned to take it better than I once did. Skyhawk |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 8:48pm Hawk...your very insightful...perception is everything...and learning...learning not to take offense...golden. We don't have to respond to every insensitive remark...now we know where to go with it...right here. And yes...it hurts when someone you love doesn't understand...but they need time...just like you said..WE can barely understand what the hell is going on here...but most important is she does now...and so does your Dr....Thank God!!! One Dr said to me.."I hate even dealing with people like you...I look at you as a big headache..." that was about three months ago...I didn't say anything back to him...in fact I was swallowing back tears...it's people with that attitude that have caused some of our brothers and sisters to go home and take their lives. Let me rephrase that...people that are uneducated...even though I tried the guy was a complete simple jackass...just trust me on that one...you wouldnt take your dog to him...I love my neuro. He's very interested in this...and very compassionate...he takes this very serously. You do have a great and healthy attitude towards facing and dealing with CH's...thanks for sharing it...Sherri |
||
|
Title: Re: I AM PISSED OFF.... Post by George_J on Apr 14th, 2007, 9:17pm ("Shout" --Misha Gordon) http://usera.imagecave.com/georgboise/ShoutFrontPage.JPG Still I tumble relentlessly over this sleepless hump of worry. I’m restless for vision, the next song. For something other than the electrical switch that only takes me back To where I started: an adobe room in a time of decay, A small life on planet Earth, and what we imagine here. (...) Rough knowledge bares teeth in the nasty vortex of this brutal civilization. Think musical chairs, I tell myself. And begin to imagine the falling away. Each baby with ten fingers and toes, each dance taken. The beauty prayer will bear me up and we will get there, Yes we will, said the dark. (From "Surrender (Revision)"--Joy Harjo --------------------------------------- I think we distance ourselves from what others feel in order to shield ourselves from knowledge that would overwhelm us. True comprehension of what others feel would render the world unbearable--beyond tolerance. Why should those who do not get cluster headaches be any different? Poets and artists sometimes transmit a glimmer of what "compassion" would actually mean. How powerful and dangerous it truly would be. Best, George |
||
|
Title: Re: I AM PISSED OFF.... Post by Charlie on Apr 14th, 2007, 9:35pm I know I posted this before but Sherri probably hasn't read it. I told a doctor once that I had friends with cluster headaches. He said: "They can be very painful." - - - Oddly, I let him live. Charlie |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 10:01pm Charlie...that's so funny...if it werent so gd'md rude. What can you do dear Charllie....what can you do. |
||
|
Title: Re: I AM PISSED OFF.... Post by Callico on Apr 14th, 2007, 10:33pm on 04/14/07 at 20:19:39, Skyhawk5 wrote:
It took me going chronic about 4 yrs ago after 20+ yrs episodic for my wife to fully understand. She has always been supportive, but until now she didn't really comprehend what is involved. Jerry |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 14th, 2007, 11:25pm It's difficult Jerry...being that i've been chronic since day one...anyone around me saw it so often...i suppose they couldn't help but see it really hurt, iterrupted my life and i was defenseless to the pain...Im glad you have understanding between you and your wife. Sherri |
||
|
Title: Re: I AM PISSED OFF.... Post by Pinkfloyd on Apr 15th, 2007, 12:42am on 04/14/07 at 21:35:10, Charlie wrote:
He must know your friends. Maybe he visited this board once. ;;D Bobw |
||
|
Title: Re: I AM PISSED OFF.... Post by Jonny on Apr 15th, 2007, 1:29am on 04/14/07 at 23:25:26, sldrswyfe wrote:
Poor baby, they probably thought you were nuts.....LOL ;;D |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 15th, 2007, 6:16am Oh that hasn't changed Jonny...they still think Im nuts..what's changed is me giving a shit. And yes...it is a sad, messed up situation to deal with...especially when other people that are supposed LOVE me, don't even attempt to understand....I mean I understand anyone could fake rolling around, yelling, etc....but an eye swollen shut and tearing llike crazy?? And drooping??? A nose running??? Sweating so badly my hair is soaked...and my hair is down to my waist...so it's quite a mess...and my clothes are weighted down from it....and it just drips off of my jaw...Im good...but not that good...HOW THE HELL CAN YOU FAKE those symptoms...ANSWER": You cant. I don't ask for sympathy...EVER...but understanding...or at least a valiant effort would be nice.....again...if you are implying that Im trying to get attention...you're getting your ass kicked twice at the convention... ;;D |
||
|
Title: Re: I AM PISSED OFF.... Post by seasonalboomer on Apr 15th, 2007, 8:11am on 04/14/07 at 20:48:03, sldrswyfe wrote:
Oh to get those opportunities back to say something truly rude back at him. Maybe along the lines of "and Doc, I look at you as a big rectum, bye." I'm never good on my feet with the perfect line but I always think of them later. ;) Scott |
||
|
Title: Re: I AM PISSED OFF.... Post by Angie on Apr 15th, 2007, 9:07am As a supporter, people piss me off. When Barry is getting those late night hits, I cannot help but be up with him for it is hard to sleep through these hits. People at my work do not understand why I come to work tired for I have been up with him through the night. They say "oh Barry had another headache, he should try painkiller's." I just look at them and say you do not understand. I gave up trying to explain this, so I just go on with the day. This place understands so this is my sanity. Angie |
||
|
Title: Re: I AM PISSED OFF.... Post by Mosaicwench on Apr 15th, 2007, 11:54am on 04/15/07 at 09:07:40, Angie wrote:
Another supporter who echos those sentiments. Until you've walked a few thousand miles in our collective shoes, just STFU. |
||
|
Title: Re: I AM PISSED OFF.... Post by Redd on Apr 15th, 2007, 12:10pm on 04/15/07 at 11:54:59, Mosaicwench wrote:
One of the reasons I don't feel so bad about being single. It's hard enough on the kids when the beast takes over the household and events and plans have to be canceled. It's hard for me to see the look of worry on their faces when I'm shadowing and they can see it on my face. I would feel horrible putting a stranger to CH threw that learning curve, and in many ways see it unfair to do so. |
||
|
Title: Re: I AM PISSED OFF.... Post by Angie on Apr 15th, 2007, 12:51pm on 04/15/07 at 11:54:59, Mosaicwench wrote:
Thanks could not have said that better myself. It is the way I feel. I love my husband no matter what. Redd, sounds like you have great kids. Angie |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 15th, 2007, 4:35pm Loving the right person and having them love you...the real way...the human way like you deserve...would change all of that...and they would not be a "stranger" at all...I loved a man dying of cancer...a long, drawn out death...(he didn't have cancer when we met)...but still...it's amazing what a kindred spirit...how a GOOD person can change all of that on a dime. Dont ever believe you dont deserve to be loved because of your condition...YOU DO AND WILL...and thanks supporters...we reallly need and appreciate you...you mean more than you'll ever know..... [smiley=heart.gif] [smiley=hug.gif] |
||
|
Title: Re: I AM PISSED OFF.... Post by UN solved on Apr 15th, 2007, 4:45pm Just tell em' ... if they really want to know what CH is .. to just read this ... and give them a copy of this that you've printed out. http://www.ouch-us.org/chgeneral/colleagueletter.htm Make sure to tell them there will be a quiz !! ;;D UNsolved 8) Edited to correct the link |
||
|
Title: Re: I AM PISSED OFF.... Post by Redd on Apr 15th, 2007, 5:29pm It's not at all that I don't feel I deserve love. I HAVE love. The love of my children, the love of my family. I've even managed to earn the love of a few of the brothers and sisters I know from this site. I do have love. In a few years, my children will be having children of their own, and then I'll earn the love of my grandchildren too. If the right man came along...of course I wouldn't turn him away. But the operative term is "right" man. Rather than suffer fools as I have before, I'm content to remain single until the proof comes with the putting/pudding/... aww you know what I mean.... ;) |
||
|
Title: Re: I AM PISSED OFF.... Post by ClusterChuck on Apr 15th, 2007, 5:37pm I know you lust after my bod, Redd, and ya knowz I luvz ya ... But NO ... I am not available to you ... Now Jonny is a different story ... Chuck |
||
|
Title: Re: I AM PISSED OFF.... Post by Jonny on Apr 15th, 2007, 5:51pm on 04/15/07 at 06:16:15, sldrswyfe wrote:
Gee, I feel special, no one has ever tried to prove they had CH as much as this to anyone here. Your special. |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 15th, 2007, 6:02pm Jonny...Im going to leave that alone and you're right...I am special. Have a great night. :-* |
||
|
Title: Re: I AM PISSED OFF.... Post by sldrswyfe on Apr 15th, 2007, 6:08pm Red...I know exactlly what you mean...God do I know. I also know you are very loved by your family...still...i cant help but want another sister to be loved by a good man and lighten your load...I have been there and back...Thoughtfully, Sherri :) |
||
|
Title: Re: I AM PISSED OFF.... Post by Jonny on Apr 15th, 2007, 6:26pm on 04/15/07 at 18:02:24, sldrswyfe wrote:
Why did I think that would be the case? |
||
|
Title: Re: I AM PISSED OFF.... Post by Charlie on Apr 16th, 2007, 8:13pm Sherri: Have you looked at Simon's letter? If not, do so and print it out for all these people that think CH is something easily dealt with. We all have done it. Here: http://www.ouch-us.org/chgeneral/colleagueletter.htm Charlie |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |