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        New Message Board Archives >> 2004 Posts >> Life
        
(Message started by: undisclosed on Aug 13^th, 2004, 1:00pm)

Title: Life
Post by undisclosed on Aug 13^th, 2004, 1:00pm

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.

Title: Re: Life
Post by vig on Aug 13^th, 2004, 1:03pm

no laughing here, fight one more round...

Title: Re: Life
Post by john_d on Aug 13^th, 2004, 1:03pm

not laughing, rather thinking deeply. thanks for the disclosure.

Title: Re: Life
Post by IndianaJohn on Aug 13^th, 2004, 1:04pm

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!

Title: Re: Life
Post by Gator on Aug 13^th, 2004, 1:14pm

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

Title: Re: Life
Post by Rock_Lobster on Aug 13^th, 2004, 1:22pm

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.

Title: Re: Life
Post by Jeepgun on Aug 13^th, 2004, 1:38pm

Hang strong, man. You're in a good place, here. Lots of information, tools, weapons, and support.

Title: Re: Life
Post by alleyoop on Aug 13^th, 2004, 2:02pm

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 :)

Title: Re: Life
Post by kimh on Aug 13^th, 2004, 2:07pm

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 :)

Title: Re: Life
Post by synergy2120 on Aug 13^th, 2004, 2:21pm

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

Title: Re: Life
Post by OneEyeBlind on Aug 13^th, 2004, 2:48pm

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 !

Title: Re: Life
Post by UN_SOLVED on Aug 13^th, 2004, 3:15pm

Not laughing here either. Been there and felt that way.

Hang in there

Unsolved

PM me anytime

Title: Re: Life
Post by Becky on Aug 13^th, 2004, 3:36pm

[[{ 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

Title: Re: Life
Post by Tiannia on Aug 13^th, 2004, 3:39pm

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

Title: Re: Life
Post by miCHel on Aug 13^th, 2004, 4:03pm

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

Title: Re: Life
Post by Carl_D on Aug 13^th, 2004, 4:07pm

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

Title: Re: Life
Post by farmboy on Aug 13^th, 2004, 4:14pm

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.

Title: Re: Life
Post by Superpain on Aug 13^th, 2004, 4:24pm

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.

Title: Re: Life
Post by undisclosed on Aug 13^th, 2004, 6:15pm

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...

Title: Re: Life
Post by Superpain on Aug 13^th, 2004, 6:20pm

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.

Title: Re: Life
Post by Woobie on Aug 13^th, 2004, 6:25pm

Check your PMs

Title: Re: Life
Post by Charlie on Aug 13^th, 2004, 6:52pm

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

Title: Re: Life
Post by Margi on Aug 14^th, 2004, 2:59pm

are things any better today, Undisclosed? We're worried about you...

Title: Re: Life
Post by UN_SOLVED on Aug 14^th, 2004, 3:13pm

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

Title: Re: Life
Post by undisclosed on Aug 14^th, 2004, 5:29pm

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.

Title: Re: Life
Post by E-Double on Aug 14^th, 2004, 5:58pm

Hang in there Michael!!!

We've all been there and are all here for ya.

best to ya and pain free times ahead!

E

Title: Re: Life
Post by ShariRae on Aug 14^th, 2004, 6:18pm

Keep reaching..there are plenty of hands to take yours...
Keep fighting..there are plenty of fighters here with you..
Huggs
Shari

Title: Re: Life
Post by Margi on Aug 14^th, 2004, 6:41pm

Good to hear from you, Michael - and so proud of you that you made it through the night!

Always remember that when you feel like you are running out of rope, we have an endless supply here ok? This truly is an international place and there is someone here 24/7 (because of all the different time zones).

So, tell us your story. How long have you been clustering? Have you tried oxygen? Do you have good support at home? C'mon, pull up a chair. It really does help to share your battle plan with fellow warriors who understand like no one else ever can.

Hugs back,
Margi

Title: Re: Life
Post by Gator on Aug 15^th, 2004, 4:16am

Glad to see you're still in the game. We take it very seriously around here when peeps starting talking about not fighting any longer.

Don't just stand there in the doorway. Come in sit down and tell us your story. Maybe together we can help you come up with a game plan. At the very least, we can be very good listeners and sometimes, that's enough.

I check the board frequently, so PM me if you need to talk.

Gator

BTW, were you signing your post as Michael or answering Unsolved's question and calling him Michael?

Title: Re: Life
Post by undisclosed on Aug 15^th, 2004, 11:17am

I was answering Unsolved's question and calling him Michael.

Today is a better day as well.

I think a post should be created that ALL post to prior to taking or being injected with any type of steroid/preds as they will make you lose your sh*t.

Thanks all for the support. I needed it and you were here. I don't know what I would have done had I not come and posted my fears and feelings here first. Bless you all!

have a good and pf one

Title: Re: Life
Post by E-Double on Aug 15^th, 2004, 11:22am

Glad "someone" is feeling better.
Undisclosed. we're here and let loose if needed but stick around!

Best to ya and best to Michael ;)

Eric

Title: Re: Life
Post by IndianaJohn on Aug 15^th, 2004, 11:29am

Glad you're still with us, much vibes and support coming your way...

Title: Re: Life
Post by miapet on Aug 15^th, 2004, 12:29pm

I'm glad your day was a bit better, and that you're still fighting *smiles*

*positive light and energy*
miapet

Title: Re: Life
Post by jhammer on Aug 15^th, 2004, 1:12pm

Glad to hear your feeling somewhat better!

Stick around a while and feel free to rant...we've all done it at one point or another. Sometimes that's all it takes to feel better.

~Jake

Title: Re: Life
Post by undisclosed on Aug 15^th, 2004, 11:02pm

I know now it WAS the steroids as today I am fully back to feeling like normal. Able to fight the beast, fully armored and unbeatable.

The beast may knock at me but he will NOT knock me down!

thanks for all the support, strength, pm's, etc. while I was temporarily steroidally insane. (is that a word?)

oh...pf today as well! Maybe it will last for several weeks and Friday was just a farewell dance for awhile.

You guys and gals are the best! Thank you again!

Many pf days and nights wished for all!

Title: Re: Life
Post by Gator on Aug 15^th, 2004, 11:19pm

Glad you're having a break from the beast. I hope you are right and that was a farewell dance, for permanent.

Don't go riding off into the sunset, now. Stick around, it gets better from here. Maybe you can help someone else who is going through what you went through. If not, well, it was nice meeting you. Hopefully there will never be a NEED for you to return, but we look forward to seeing you just the same.

Gator

Title: Re: Life
Post by bluesunshine on Aug 16^th, 2004, 12:00am

on 08/15/04 at 23:02:15, undisclosed wrote:

Able to fight the beast, fully armored and unbeatable.

The beast may knock at me but he will NOT knock me down!

I like that. Never surrender!!!

Hey, i am sending you more PF vibes to you to help you fight!

(((((undisclosed ))))))

blue

Title: Re: Life
Post by OneEyeBlind on Aug 16^th, 2004, 6:26am

Glad to hear today is a better day. Hang in there. We're always here if you need us.

Title: Re: Life
Post by thomas on Aug 16^th, 2004, 5:32pm

Glad to hear that you are winning the battle. Keep it up.

Title: Re: Life
Post by Dads angel on Aug 16^th, 2004, 7:28pm

The beast will not win. I have faith in that. I know none of you will ever let him win. Now, he may win the battle... but the war will be yours. You're tired of fighting... not defeated! I will not allow you to be defeated.

Title: Re: Life
Post by Little Deb on Aug 16^th, 2004, 7:47pm

You are the strength, Stephanie. Keep up the great work. A child can make all the worst days make life worth fighting for.

stay strong undisclosed.....................Little Deb ;)

Title: Re: Life
Post by undisclosed on Aug 16^th, 2004, 9:31pm

I'm still hangin' and doing actually REAL well now. Very few shadows and NO ch.

I think the steroids are doing their job at armoring me from the beast AND the initial emotional crash is all in the past.

Tredge on fellow soldiers and thanks for stopping by and giving a parched soldier a drink of your strength!

god bless all

Title: Re: Life
Post by Little Deb on Aug 16^th, 2004, 9:41pm

So glad to hear. Don't be a stranger........

Title: Re: Life
Post by thebbz on Aug 16^th, 2004, 9:54pm

When in doubt whip it out!!! I am happy for you. We all go through those times. Tough people are we!! Keep up the fight. BB

Title: Re: Life
Post by Tim_Z on Aug 17^th, 2004, 1:13am

Keep fighting and hang in there, it may not seem like it but things always turn around.

Tim