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Topic: Life (Read 591 times) |
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undisclosed
New Board Newbie
I love YaBB 1G - SP1!
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The demon takes my breath away. Even in the darkest of hours, I know I am not alone as the demon is always waiting to creep upon me. The beast knows even the strongest willed eventually fall. I fall into a deep, dark cove of misery, depression and loss of will. It is at this time, when I have no more dignity or strength, that I ask God why I am to suffer such unthinkable pain.
I am tired, so very tired. My life has been altered SO much by the beast already and yet he continues to beat me down further and further. Gone is the child bearing days, a misdiagnosis of the beast, surely while the beast laughed at the loss and mistake. Gone is the freedom to do what I enjoy so much because of another misdiagnosis and resulting surgery gone bad. I’m sure that one had the beast laughing really hard.
I no longer feel the desire or have the strength to fight. I’m too tired and the beast is winning.
Laugh as you may…it won’t be the first time.
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vig
CH.com Alumnus
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CHit Happens
 
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Re: Life
« Reply #1 on: Aug 13th, 2004, 1:03pm » |
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no laughing here, fight one more round...
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never, Never, NEVER quit. -Winston Churchill
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john_d
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not laughing, rather thinking deeply. thanks for the disclosure.
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IndianaJohn
New Board Hall of Famer
Into the jaws of the Beast we ride!
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Re: Life
« Reply #3 on: Aug 13th, 2004, 1:04pm » |
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Please don't give up yet! there is a wealth of information here and people that really care. Check out the links to the left and read the message boards. There is help to be had.
The beast beat the hell out of me last night, but I am still standing today!
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Did my brains fall out or is this headache over?
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Gator
CH.com Alumnus
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Re: Life
« Reply #4 on: Aug 13th, 2004, 1:14pm » |
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Hang in here. Don't let the ba$tard win. We have all been where you are at one point or another and we are here for you now. I've been as low as you can get without actually pulling the trigger. Let me know if you want to talk.
Gator
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Lobster
CH.com Alumnus
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Re: Life
« Reply #5 on: Aug 13th, 2004, 1:22pm » |
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Sounds like a lot of us... a painful period of misdiagnosis.
But that is in the past.
We all know its name now. Lotsa weapons out there to kick its ass once you know its name.
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Rock beats Scissors.
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Jeepgun
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Hang strong, man. You're in a good place, here. Lots of information, tools, weapons, and support.
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alleyoop
New Board Hall of Famer
Wake me up when it's all over.
 
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Re: Life
« Reply #7 on: Aug 13th, 2004, 2:02pm » |
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undisclosed, I too have been misdiagnosed(as have many others). I have had two sinus surgeries(others have had unwaranted surgery).
I have been about as low as one can go, but because of this site and the people I have met here I KNOW I'll never hit that low again!
Click on the name of anyone you want to talk to. It'll take you to their profile. Scroll to the bottom of the page and click on the personal message link. If you feel intimidated by the boards, you can talk one on one to anyone here you want to!
HANG IN THERE! I promise it will get BETTER!
............................................alley 
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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kimh
New Board Hall of Famer
What don't kill ya makes ya stronger
Posts: 764
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Re: Life
« Reply #8 on: Aug 13th, 2004, 2:07pm » |
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Welcome Undisclosed,
The Beast thrives on your isolation. Starve him. Here is where you begin. Clusterville is always open. Start talking.
The Beast thrives on misdiagnosis merrigorounds and "patient" vulnerability. Starve him by taking the reigns and gaining knowledge about your illness. Here is where you begin. Clusterville is always open.
Start reading.
The Beast feeds on despair and loss of will. Have hope. You are STRONGER. Here is where you begin. Clusterville is always open. Hope and strength are yours for the taking***
Warmest well wishes and PFDAN
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synergy2120
New Board Junior
There is a rainbow out there somewhere...... ..
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Re: Life
« Reply #9 on: Aug 13th, 2004, 2:21pm » |
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Hang on in there hun.......YOU ARE SO MUCH STRONGER THAN THE BEAST!
Welcome to your new family sweetie - keep posting and we will help you through this
love sarah xx
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OneEyeBlind
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Yea, I can do this
Posts: 574
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Re: Life
« Reply #10 on: Aug 13th, 2004, 2:48pm » |
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Welcome, welcome, welcome. The beast will try and beat you down. You need not let him. The beast will try and wear you down. You need not let him.
You never know what life will give you, for life is ever changing. Never thought I would have kids, and never did have any of my own. Raised one niece, and here we are again ........ raising two boys who aren't ours but hoping some day that they will think they are, just like our niece does.
Life is a miracle, grab it, and hold on. The ride is awsome !
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One cannot step twice in the same river, for fresh waters are forever flowing around us.
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UN_SOLVED
New Board Hall of Famer
I need a fully-automatic Imitrex injector !!
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Re: Life
« Reply #11 on: Aug 13th, 2004, 3:15pm » |
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Not laughing here either. Been there and felt that way.
Hang in there
Unsolved
PM me anytime
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I'm STILL alive ?
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no-one
New Board Hall of Famer
aude sapere cogito ergo disce pati
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Re: Life
« Reply #12 on: Aug 13th, 2004, 3:36pm » |
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{{{{{ Undisclosed }}}}}}
Don't worry no body here will laugh, we all understand. Please don't give up, we are here for you. PM one of us, there is always someone on at any hour day or night to talk to.
Hugs
Bec
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"Be who you are and say what you feel...Because those that matter....don't mind....And those that mind....don't matter."
Man is what he believes. Anton Chekhov
Unless you believe, you will not understand.
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Tiannia
New Board Hall of Famer
Life does not apologies......
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Re: Life
« Reply #13 on: Aug 13th, 2004, 3:39pm » |
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No one here is laughing. We have all been through your pain and understand the loss and disappointment. And many of us have been at the point of giving up. Please dont. We all here KNOW better then anyone inthe world what you are feeling. What you have felt everyminute. Every loss, every minute of extreme.... exquisite pain. We can help and you have hundreds of hands that will help you up after every fight. We will sit with you and cry or leave you alone and understand the screams.
Yes there are many times that I think the beast has laughed at me. Knowing that I was fighting and trying to live my life and function while under the surface all I wanted to do was scream at the top of my voice.
Pain Free Wishes, my dear,
-Tiannia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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miCHel
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Re: Life
« Reply #14 on: Aug 13th, 2004, 4:03pm » |
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Undisclosed,
Unfortunately, I think a lot of us could have written a post similar to yours at one point of another. The beast will do that to you 
Fortunately, this place exists. This is the best possible group of people to get you through the fight. I was at a very low point when I got here. These guys picked me up big time!
Hang in there!
miCHel
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Good one Scotty! Now beam down my clothes...
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Carl_D
Guest
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Undisclosed,
I can totally relate to your post here. Many times I have felt like giving up, but I realize that if I do, that means the beast has won. I know you're having it rough right now, but hang in there. Many better days are to come. I think the CH beast has made all of us to feel like life isn't worth living - but it is. The CH won't last forever, it WILL end. Hang in there and if you need someone to lean on, there are plenty of shoulders here. No one laughs when someone else is going through the dark valley here. You're among people who understand.
Just remember, you can't have a rainbow without the rain. Don't EVER let the beast win. If you need someone to talk to, we're here.
Peace,
Carl D
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farmboy
New Board Veteran
In Cycle and in Pain
Posts: 197
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Re: Life
« Reply #16 on: Aug 13th, 2004, 4:14pm » |
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Hang in there , Better times are coming.
I had my back broken in a accident and i thought all was lost but now i am good. then i get this CH thing trown on me. Believe me when i say better time are coming. Just hang in there.
You need to get to a good dr. and get the right meds to beat the beast back into submission.
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Superpain
New Board Hall of Famer
GOT O2!?
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Re: Life
« Reply #17 on: Aug 13th, 2004, 4:24pm » |
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I see this is your first post so it's hard to tell what you know about battling the beast...
All you need to know to get pain free lies here within.
What's your deal? Are you on meds at all? Do you have any abortives? What have you tried?
We're here to help.
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Chris
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undisclosed
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
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Re: Life
« Reply #18 on: Aug 13th, 2004, 6:15pm » |
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I am TOO familiar with the meds and treatment regimens for CH.
I choose to be known as undisclosed now. Please understand I have my reasons.
Please pray and send vibes. I'm really tired of the fight.
At the end of the day, what do I have to look forward to? Another day of clusters!!!
I'm chronic and the beast is winning. The beast has never taken me this low, taken my will to fight, my desire for life. 
I'm reachin' out...
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Superpain
New Board Hall of Famer
GOT O2!?
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Re: Life
« Reply #19 on: Aug 13th, 2004, 6:20pm » |
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Your screen name is moot...
Are you famous or something?
What's up?
Kinda hard to help with no info....
But ~~~~vibes anyway.
Hope you find relief soon.
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Chris
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Woobie
CH.com Alumnus
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I luv you guys!!!!!!!!
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Re: Life
« Reply #20 on: Aug 13th, 2004, 6:25pm » |
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Check your PMs
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Charlie
CH.com Alumnus
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Happy to be here
  
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Re: Life
« Reply #21 on: Aug 13th, 2004, 6:52pm » |
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I'm very sorry to read how much this horror has taken away from your life. At one time or another we've all felt that way.
Here is one thing to ponder though: In 1991 at age 45, my clusterheadaches disappeared. I don't know why nor am I complaining about the last 13 years without them. Others have had them disappear or have had long periods of remission. Nothing is written that it can't happen to you.
Keep posting and let us know some more. We're a bunch wackos but benign in the long run.
You came to the right place.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Margi
CH.com Alumnus
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Nuthin like a good neck rub!
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Re: Life
« Reply #22 on: Aug 14th, 2004, 2:59pm » |
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are things any better today, Undisclosed? We're worried about you...
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: Life
« Reply #23 on: Aug 14th, 2004, 3:13pm » |
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Undisclosed,
Sounds like you need some R & R. I know you said you are "Too familiar" with CH meds and treatments but I thought I'd suggest anyways:
How about a DHE infusion therapy ? Would that help you ? Ever had an ON block ?
Just trying to be helpful,
Unsolved
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I'm STILL alive ?
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undisclosed
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
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Re: Life
« Reply #24 on: Aug 14th, 2004, 5:29pm » |
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Thanks for the strength!
Yesterday had to be the lowest day of my life.
I had a cervical epidural steroid injection on Tuesday and when I received the same last year the beast stayed away for 6 weeks. This time, he came back in only 48 hours while I was still "not right" from the steroids and I had been taking Ambien to try and sleep thru the restlessness from the steroids.
Somewhere in all of the above I just hit rock bottom when the beast appeared so unexpectedly and so soon. I had hoped for so much more pain free time.
I'm fighting today and hope to continue to fight every day until I get the nasty side effects of the steroids out of my system and can return to my normal emotions.
Until then....I may reach out again. My cocktail has failed and so did the steroids.
hugs to all
Michael,
Yes, I've had several ON blocks, supra orbital blocks and supra trochlear blocks as well.
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