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Topic: read ONLY if you or someone you love has ch (Read 397 times) |
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minnie
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my greatest joys are my daughters April & Beth
 
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read ONLY if you or someone you love has ch
« on: Sep 17th, 2004, 10:30am » |
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Hello everyone one year ago today one of our best supporters posted a very heartfelt expression of the "other kind of pain" that of the supporters.Jackie posted this on the supporters board . I thought it would be nice to post it here.I hope that maybe some of the supporters who don't read the mb supporters section readt his and relize they too are not alone.I also hope that this opens new lines of communication for all who are in one form or another battling the beast.
Another kind of pain By Jackie
Another kind of pain....
« on: Sep 17th, 2003, 4:02pm »
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I'd like to start by telling you all what this post IS NOT. This is not a post or story that is meant to be self-serving. It's not a post about who suffers more or who's pain is the more hurtful. It's not a "complain" post or a "whine" post. It's a post about what if feels like to be me.....the wife of a chronic clusterhead who I love with all my heart. It's a post about what it feels like to be me when I read so many of the sufferers posts because I have seen with my own eyes the pain they are talking about.
Clusters hurt supporters hearts.......
I've watched Blake reeling in pain for endless hours. I've heard him beg God to kill him. When God doesn't he's begged me. That's heart pain.
I've seen Blake (some mornings) looking like he just walked out of a concentration camp.....eyes sunken in, no color, no facial expression. I ask him if he'd like a cup of coffee and say 'you better hurry up, honey, or you'll be late for work'. What I'm thinking is how can this man make it another day...how can he go to work. But...I know I have to make him try. I know I can't let him give up. That's heart pain.
At different times I've asked the doctors to change Blake's drugs. I've done this more than once and it's usually when he's in "high cycle". My theory is we have to keep trying...we have to keep looking. One time when we changed drugs it made it much worse. Right in the middle of a Kip10 he's begging me to please never try another drug...please never ask him to do this again. That's heart pain.
I've intentionally made Blake mad when I feel he's about to give up. I've pissed him off just to get his blood flowing and get the heart rate up. It works but it just about does me in when all I really want to do is hold him and cry. That's heart pain.
Clusters hurt supporters egos......
I'm a bit of a contol freak. I like to take charge and fix things up. I like to make things better for friends, family and loved ones. But you know what.....there's not a damn thing I can do to stop the pain when the demon hits. I can't threaten him, scare him away, bust his balls or buy him off. I have to accept that I can't make it all OK for Blake until the demon lets me. I have to stand by in a helpless state. That's ego pain.
There's one more pain and it's called guilt.......Blake and I are husband and wife. We are soul mates. We are best friends. We are supposed to share everything....the good things and the bad....the tears and the laughter....the pain and the "feel good" times.
I have begged God to put the demon on me....to give Blake a break....to leave him alone for just one week. But.....it never happens. Blake has to endure all the hits and that's not right. That's guilt pain.
Well.....that's about it I've run my mouth again as usual.
Love to you all....suffers and supports alike
Jackie
LOL...one more thing. My theory is never let 'em see ya cry, never let 'em see ya sweat, never let them see any doubt on your face.....hang tough and they'll hang tough with ya......fight the demon with them and they won't give up......tell them that tomorrow will be better and they'll try it another day.
Damn....I'm a long winded broad...
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Thank you Jackie for giving me permission to repost this.I have always admired the strength and support you give to Blake and all of us in this "family".your sense of humor and gentle heart always show in your post and I consider it an honor to have met and Blake you in Nashville.
I also had the chance to meet other great supporters in Nashville (too many to name) but all with the same determination not to let the beast win.I would like to remind people that a convention or meet and greet is also great for supporters.you meet some of the greatest people who know how ch. can effect the whole family.just be careful because you will have the blues for months later wishing you could be back with this crazy ch family.
I'll stop rambling now.just sending a big hug out to all with pain free wishes mixed in
Minnie
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| « Last Edit: Sep 17th, 2004, 10:34am by minnie » |
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gore2424
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Re: read ONLY if you or someone you love has ch
« Reply #1 on: Sep 17th, 2004, 10:43am » |
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What a great post minnie that you put on here from Jackie last jan 04 at davcon04 i meet jackie and blake what a nice caring and sharing couple i too have a wife Chris who has been with me thur my 18 years of clusters which in nov 1999 i turned chronic My wife Chris is my soul mate my angel always there for me she is a CNA and loves to read and she even has given the nuero's and dr's i have had info they didnt have and suggested meds that they had not tried yet we have talked about the same others pains that supporters go thur too I can truly say without her i would not be posting here right now so in closing i know what you are saying minnie/jackie so pfdan to all plus hugs too Terry
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what the hamsalad was that ¿?¿
I said your hair looks nice Ü
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KingOfPain
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Re: read ONLY if you or someone you love has ch
« Reply #2 on: Sep 17th, 2004, 10:50am » |
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Thank you Minnie!
I can't type much more,
it's that dang smoke in
the eyes deal again.
Edit: Thank you so much
Jackie for all you do for
Blake. 
I never read or saw this
[Jackie's] post before now.
Shame, it's beautiful.
Thank you Jackie.
Hi Blake & Jackie & Minnie too.
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| « Last Edit: Sep 17th, 2004, 11:03am by KingOfPain » |
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Arrived August, 1999.
We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
- Denis Diderot
Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
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Jeepgun
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Re: read ONLY if you or someone you love has ch
« Reply #3 on: Sep 17th, 2004, 10:50am » |
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Great post... At NashCon, watching others getting hit, for the first time was heartbreaking. I asked for their pain, and if I could have taken it on so that they could have some pain-free time, I would have done it in a heartbeat. NOTHING makes me cry, ever. Seeing others getting hit made me cry.
-Frank
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KingOfPain
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Re: read ONLY if you or someone you love has ch
« Reply #4 on: Sep 17th, 2004, 11:01am » |
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on Sep 17th, 2004, 10:50am, Jeepgun wrote:Great post... At NashCon, watching others getting hit, for the first time was heartbreaking. I asked for their pain, and if I could have taken it on so that they could have some pain-free time, I would have done it in a heartbeat. NOTHING makes me cry, ever. Seeing others getting hit made me cry.
-Frank |
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Ditto Frank.
I blubbered like a baby.
It wasn't my 1st time though,
hurts no less, no matter how
many times I witness it.
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Arrived August, 1999.
We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
- Denis Diderot
Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
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Jeepgun
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Re: read ONLY if you or someone you love has ch
« Reply #5 on: Sep 17th, 2004, 11:12am » |
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Given the choice, I would rather be the sufferer than the supporter who lives with watching a loved one suffering day in and day out. This is also the reason why I'm grateful for Mari's way of supporting me: If I get up in the middle of the night, she says, "Are you having one?" I reply, on my way out of the bedroom, "Yeah...." She sleepily says, "I'm so sorry..." I reply, "It's okay, baby. I'm okay..." and she goes back to sleep. I make my way to the living room or out to the front porch, and hold my own private "rock concert."
I've said this before, but I am determined to marginalize CH as much as I can, to keep it from impacting my personal quality of life and the lives of my family. I am not this pain and I refuse to be victimized by it, or to allow it to hold my family hostage. So... I breathe through them, ride them out, take a shot of Imitrex when they get REALLY bad, spend those wee hours of the morning after the hit is over, talking and snuggling with my kitties, go in and look at my daughter's sweet face while she sleeps, and I know that no matter how bad the pain ever gets, deep down I know that life is good and I will survive.
-Frank
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TxBasslady
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Re: read ONLY if you or someone you love has ch
« Reply #6 on: Sep 17th, 2004, 11:21am » |
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Minnie,
I've always felt that the best support is the support given out of love.
Yes, Jackie is a great supporter.....and undoubtedly the best friend I have ever had. The support and the advice she gives on this board is an example of the love that exists in that big heart of hers.
There are many supporters here. Each and every one of you have given of yourselves, to help and support.
You are a prime example, Minnie. You have given such great support to Billy, and you still find the time to support the rest of us who suffer. I hope you know how much this means to me.
I am, and will be, forever grateful.......
What a pleasure it was, to meet you in Nashville!
You're a real sweetie......and definitely.."a keeper".
Thank you for the love and support. 
Lots of love,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Leesa
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Re: read ONLY if you or someone you love has ch
« Reply #7 on: Sep 17th, 2004, 2:09pm » |
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Minnie & Jackie, THANK YOU for posting this. Jackie with this you summed it all up. Nice job gal!!
Ive learned some of best lessons from the supporters here and I thank you for all you do for those you love.
Leesa
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"The truth of the matter is that you always know the right thing to do. The hard part is doing it." General H. Norman Schwarzkopf
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JDH
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Re: read ONLY if you or someone you love has ch
« Reply #8 on: Sep 17th, 2004, 2:58pm » |
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I remember that post, thanks Minnie.
IMO Jackie ROCKS!!! and her sidekick ain't too bad either 
Jim
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BillyJ.
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Re: read ONLY if you or someone you love has ch
« Reply #9 on: Sep 17th, 2004, 7:42pm » |
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bumpity ~~~ bump ~~~ bump
just want a chance for people to read Jackies post.
HI Gore 2424 , KOP , Jeep, Jean ,Leesa and JDH
Thanks for posting your support for Jackie and other supporters   
Minnie edited to add....oops posted under Billy 
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| « Last Edit: Sep 17th, 2004, 7:44pm by lonenightowl » |
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Cerberus
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Re: read ONLY if you or someone you love has ch
« Reply #10 on: Sep 17th, 2004, 8:41pm » |
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never get tired of this particular bit of wisdom...
Ramon
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Edna
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Re: read ONLY if you or someone you love has ch
« Reply #11 on: Sep 18th, 2004, 12:50am » |
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WOW, thank you minnie for sharing that with us. I had never read it before either.
Jackie, you're a gem, and thank you......for supporting not only Blake, but us also. That post really shed light on what many supporters feel, but perhaps cannot express as well.
DJ.......thank you again, I love this place and many people here!!
pf wishes,
EDNA
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Jackie
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Re: read ONLY if you or someone you love has ch
« Reply #12 on: Sep 18th, 2004, 9:29am » |
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Minnie......you're such a sweatheart. Thank you.
Thank all of you for the kind words. I'm humbled.
JDH....that's one of my favorite pictures...
We're all in this together. If we hang tough we will win!
Yep, that's what I'm saying....
Love to you all...
Jacks
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Charlie
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Re: read ONLY if you or someone you love has ch
« Reply #13 on: Sep 18th, 2004, 5:06pm » |
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If true empaths exist, they'll be found living with a clusterhead.
Charlie
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kimh
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What don't kill ya makes ya stronger
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Re: read ONLY if you or someone you love has ch
« Reply #14 on: Sep 18th, 2004, 5:15pm » |
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That's a language we all know well inside and out -- matter of fact -- it's why we are all here -- STILL.
Linquist lately
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BlueMeanie
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Re: read ONLY if you or someone you love has ch
« Reply #15 on: Sep 19th, 2004, 12:24pm » |
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Thanks Minnie & Jackie.
Even though you can't take the pain away, just being there helps more than you'll ever know. Hugs to ya.
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