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        New Message Board Archives >> Oct-Dec 2003 >> New To Site.
        
(Message started by: nmemoryofDWS on Nov 14^th, 2003, 7:59pm)

Title: New To Site.
Post by nmemoryofDWS on Nov 14^th, 2003, 7:59pm

Hello,
I wanted to join this group to be support for anyone that may need it. I lost a very close friend Danny Speegle Monday Nov 3rd. He was a CH sufferer as well. I never really looked into CH until after his passing, and now I see why he did what he did. It was his only escape from the pain. I feel for all of you that suffer with this monster. And I want to be there for anyone that needs someone to talk too. Tho I can't relate to your pain and suffering I can be there for you to vent. I will pray for each of you and hope that in some way you can find peace. Thanks for allowing me to be part of such an amazing group of people.

Title: Re: New To Site.
Post by Melissa on Nov 14^th, 2003, 8:29pm

Hello Tammy, welcome to ch.com. I'm so very sorry to hear the loss of your close friend, please know that we understood his pain all too well. Also, thank you for offering a supporting hand to us, that is very kind of you. Stay well and take care...

melissa

Title: Re: New To Site.
Post by goaway on Nov 14^th, 2003, 8:30pm

WELCOME TAMMY!!

Glad you found us. Always remember that like families everywhere, we help and annoy each other from time to time.

However, hands down, this group of clusterheads will flat out always ALWAYS be there to help you if you need it.

Now,......GRAB AN OAR AND START ROWIN'! ;)

Oh, one more thing, despite anything you may hear to the contrary, I'm actually one of the more likeable putzs on the board. [smiley=biggrin.gif] [smiley=biggrin.gif]

Title: Re: New To Site.
Post by taraann on Nov 14^th, 2003, 9:50pm

Hi and welcome to the board. SO sorry to hear of the loss of your friend. Thank you for offering your support that is very kind of you.

Title: Re: New To Site.
Post by Charlie on Nov 14^th, 2003, 10:21pm

Welcome to our little world and thanks for your support. It's sad hearing that you lost your friend. CH is a monster but we do our best with it. Now and then we win part of the battle.

Here's something you might want to look at as it might help to explain this horror to others.

http://www.ouch-uk.org/ch/note_colleagues.cfm

Let us know what we can do and thanks much.

Charlie

Title: Re: New To Site.
Post by Lori on Nov 14^th, 2003, 11:08pm

Thank you for wanting to come here and offeer support/prayers. You have my sympathy with the loss of your friend. :'(

Title: Re: New To Site.
Post by ClusterChuck on Nov 14^th, 2003, 11:28pm

What a marvelous tribute to Danny! Thank you for you offer of help, and welcome aboard!

Now, I hope I am not being insensitive, or that my question will pain you, but I have to ask. You gave me the impression that Danny took his own life. Is this so? Was he in cycle when he did it?

The reason I ask this is that these are known as suicide headaches, but there have been threads asking if anyone knew of some one who had done this drastic step. I am just trying to find out if we have to add another victim to this terrible ending.

Thanks
Chuck

Title: Re: New To Site.
Post by nmemoryofDWS on Nov 15^th, 2003, 12:08am

First off WOW guys, thanks for the warm welcome!!!

Chuck...
The answer to your question regarding Danny is yes he did take his own life. He had dealt with CH since a mid teens and the past 3 months had been total heck for him. I read some of the stories other that suffer with CH have posted and so very many of them remind me of things Danny had spoke to me about. He kept a journal on his website and would post them for all to see and maybe let others try to make sense of the torment he was living in. I would read them weekly and think My Gawd how horrible that someone has to live like this. His brother gave this website to many of his friends that were trying to make sense of Danny's reasoning for taken his life. I checked out this site right after receiving word that Danny had left us. I was so heart breaking to see so many of you suffer from CH. I had never heard of them prior to knowing Danny. He was a close friend to my family and meant the world to my little girl. Her and I have since his passing educated ourselves about CH. I can see how you all suffer, this is the reason I offer my shoulder, my hand and my ears to listen. This is my tribute to Danny, in his memory I want to be there for others that might need a "faceless" friend to vent to, talk to, cry to. No one will ever fully understand what you all have to live with, unless they themselves suffer as you. I have seen what it can and does do to people. I just want to help if I can in anyway. I want people to know that someone, somewhere does care. And maybe bring alittle sunshine to someones darkest day. I hope this answers and and all questions about where I'm coming from. And know there are people out there that do care about what you guys are going through. Thanks again for allowing me to be part of such an awesome group of people..........Hugs-Tam

Title: Re: New To Site.
Post by tsayswhy on Nov 15^th, 2003, 12:15am

Welcome Tammy

I am really sorry for your loss, You must be in a great deal of pain. :'(

Thank-you for reaching out to us. We need all the support we can get around here.

Tari

Title: Re: New To Site.
Post by cootie on Nov 15^th, 2003, 12:25am

Hello nmemoryofDWS........sorry to hear about Danny......did he have meds......didn't anything work or help. Really a shame that had to happen......really sorry to hear it. Pam that hopes there's more hope for others

Title: Re: New To Site.
Post by nmemoryofDWS on Nov 15^th, 2003, 12:56am

Hi Cootie,

In answer to your question yes Danny was taking meds. He was taking Imitrex. I know he has tried other meds prior, but like for many of you this only numbed the pain and never really took it completely away.

At his services the Pastor asked if anyone of us would, if given the chance would really ask Danny to return to us and live in pain. That one question made me realize how selfish I was being in wanting him back when now he is no longer suffering in torment and pain.

I hope this answers your question Cootie :)

Tam

Title: Re: New To Site.
Post by Unsolved on Nov 15^th, 2003, 1:31am

Hi Tam,

Sorry for your loss. Kinna feels like we all lost a 'member of this family'. We all know what kind of pain Danny was going through. My son and I will pray for Danny and his family.
One thing we do here besides all the talk and support, is we try to raise awareness of CH (Just how bad it really is). One way is by 'targeting' people to e-mail that might just be able to make a difference. We need more people to know we're here...and we're suffering from pain everyday...maybe someday...we'll find a cure or a really effective treatment. Until then, we are here to share information, stories (good and bad), and to support one another. This really is a great place to be, especially if you suffer from CH, and you won't find a nicer bunch of people anywhere.

Thanks for joining our family here at CH.com. We can ALL use the support.

Unsolved (http://cluster.home.insightbb.com)
+15 year sufferer

Title: Re: New To Site.
Post by Callico_Kid on Nov 15^th, 2003, 1:49am

Hi Tam,

I'm glad you found us, but I am profoundly grieved at the loss of Danny. He was a clusterhead, and that means in a lot of ways he was closer than family. Thank you so much for coming here in spite of your pain to try to bear a little of ours. You and your little girl will be in my prayers as well.

Jerry

Title: Re: New To Site.
Post by BarbaraD on Nov 15^th, 2003, 8:29am

Welcome Tam....

Your pastor was right - the suffering can be unbearable at times.

I lost a friend to these things also (an ER doc, who finally had to quit practicing because of these things). He sat down in his recliner one night and used a gun. My first thought on hearing of it was, "He doesn't have to hurt anymore." A few months later I found this board and it's probably kept me from taking Jerry's and Danny's way out of the pain.

This group of people are here for support and we do support each other, even with the jokes and little spats we have.

We've formed an association to help us get awareness out to docs and the public (OUCH). You might want to join and help us in our plight. Until awareness of our disease is out in the public, we'll never get anything done to prevent what happened to Danny.

Your story touched me and my prayers are with you.

Again, welcome to our little family here in Clusterville.

Hugs BD

Title: Re: New To Site.
Post by Miss_Deleny on Nov 15^th, 2003, 10:24am

Welcome to our family Tam [smiley=hug.gif]

I'm sorry to hear about Danny. Its such a terrorible thing when we lose someone we really care for. For you to come here and offer your help is a very honorable and brave thing. Thank you!

~April~

Title: Re: New To Site.
Post by nmemoryofDWS on Nov 15^th, 2003, 10:33am

Awwwww April and BD, you guys are making me cry. The love and support I have seen you guys give one another warms my heart. I wished Danny could have been a part of such an amazing group of people. Danny wasn't one to really talk of his pain and suffering. BD I would LOVE nothing more than to help raise awareness of CH's. PLEASE tell me where to go and what to do. If I could get a hold of information that I could copy, I would be more than willing to pass out the info to any and everyone. I really think Danny's employer of 15 yrs and friend of 25 would allow me to leave some information about CH at his shop. I wanted to post my daugther Shelby's poem she wrote for Danny after hearing of his passing. She also shared this at Danny's services.

"You Meant So Much"

You meant so much to all of us
You were special and that's no lie
You brightened up the darkest day
And the cloudiest sky

Your smile alone warmed hearts
Your laugh was like music to hear
I would give absolutely anything
To have you well and standing near

Not a second passes
When you're not on our minds
Your love we will never forget
The hurt will ease in time

Many tears I have seen and cried
They have all poured out like rain
I know that you are happy now
And no longer in any pain.

Again thank you all very much for allowing me to be part of such an amazing and wonderful group of people. I want to try to help prevent what happened to Danny, from happening to others. It hurts my heart to know that some people get to the point that they feel helpless and can find no peace. Please tell me how I can help. I'm more than willing to do anything I can.

Tam

Title: Re: New To Site.
Post by Ree on Nov 15^th, 2003, 5:26pm

Such beautiful insight from a small girl... So sorry about your friend... Its so hard to watch someone you love closely go through this turmoil day in day out...You are wonderful to come here and support with us... Suicide is such a tormenting event. You must remember to care for yourself and try not to point a finger or blame anyone. Suicide is a personal choice. It does happen though and sadly even some of our members have tried suicide. I lost a friend to suicide in May. He had Hepatitis C.
God bless you and your family and friends for having had to go through this terrible senseless loss... love to you Ree

Title: Re: New To Site.
Post by Little Deb on Nov 15^th, 2003, 10:32pm

Tammy,
Thanks for coming here and wanting to help. I am sad for your loss, for OUR loss. Even though Danny hadn't found us yet, he was one of us. And now he knows all of us and that we care about him.

I hope you stay with us. We need each and every supporter. I hope to meet you at the convention.

Big Hug,
Little Deb
CH 25+ years

Title: Hi
Post by HannahFroukje on Nov 16^th, 2003, 1:24am

Hi tammy,

I could say welcome but just arrived myself , so I leave that to the pro's ;;D.

First of all I want to express my sympathies to you, for loosing such a dear friend. But I think it's important that you realize that you probably have been a support to him, and he must have had warm feelings towards you because you took the trouble to listen to him, read his website and be there for him. That's so important. So let that be a comfort to you.

Secondly I think it's a great idea to come over here and try to be a support to other people. They need it!!!

I'm not a sufferer myself, only a supporter. But the good Lord knows that there have been moments that I feared my hubby would just destroy himself, cast himself from the balcony, or do something that might end his life, it's agonizing, I could not even blame him if he WOULD somewhere in the future.

Once his cluster took 13 weeks and he was beginning to worry if he would become a chronical sufferer, with 6-8 severe attacks that last several hours EACH day, now that was a moment I started worrying if he would be able to live with that, because I must admitt it seems impossible to be able to live with that.

So as you came to understand, I too understand that a sufferer would take his own life, it can be unbearable, it has nothing to do with being weak when you finally give up (that's only my opinion).

Title: Re: Hi
Post by jonny on Nov 16^th, 2003, 2:41am

on 11/16/03 at 01:24:57, HannahFroukje wrote:

Once his cluster took 13 weeks and he was beginning to worry if he would become a chronical sufferer, with 6-8 severe attacks that last several hours EACH day, now that was a moment I started worrying if he would be able to live with that, because I must admitt it seems impossible to be able to live with that.

To live with?......LOL

You dont live with CH it lives with you, only the sufferer can wade through it given they can find a Doc that knows WTF is going on.

29 years chronic and still fighting

............................................jonny

Title: Re: New To Site.
Post by Little Deb on Nov 16^th, 2003, 11:04am

yes. we don't live with it. we suffer, endure, and survive with it. minute by minute, second by second sometimes.

Title: Re: New To Site.
Post by thomas on Nov 17^th, 2003, 1:42pm

Thanks for being there. :) I'm so sorry about the loss of your friend. :'(

Title: Re: New To Site.
Post by paul_b on Nov 17^th, 2003, 1:51pm

This is a very special thread. To all who are fighting the Beast at this time, I send vibes of strength and long moments of serene calm. To the lovely lady and daughter who have joined us, welcome.

Title: Re: New To Site.
Post by KingOfPain on Nov 17^th, 2003, 3:03pm

Thank you Tammy.

Welcome to the site.

I am sorry for your loss. :(

In Memory of Danny Wayne Speegle.

http://tinyurl.com/vdz6

Rest In Peace.

KingOfPain

Title: Re: New To Site.
Post by cathy on Nov 17^th, 2003, 3:20pm

Tammy.....Our deepest sympathies for your loss, offering your support is kind and welcomed. Your daughters poem was a beautiful tribute to someone who whether we knew him or not is special in our hearts here.

Take care and hugs to you both.

Cathy

Title: Re: New To Site.
Post by TomM on Nov 17^th, 2003, 4:06pm

Tammy,
Your tribute to help others in Danny's honor is amazing.
Welcome to this strange but normal family.
TomM

Title: Re: New To Site.
Post by nmemoryofDWS on Nov 19^th, 2003, 10:49am

Thank you TomM

Everyone has been so very supportive and sweet. Again I wished Danny had found this site or if he did I wished he would have been more involved.

I told Paul earlier, each day brings new understanding. More information. Each day that passing makes me more and more want to get involved in getting the message out about CH's and raising awareness. I can't tell you how much people so far I have told about CH's. Sooooooooooo many ppl out there aren't even aware of what they are. I have sent a lotta ppl to this site to get informed. I dont know how much help or support it will bring, but just knowing that ppl are actually paying attention and getting informed makes me happy.

Tam