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Topic: I don't usually do this, but... (Read 332 times) |
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Margi
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I don't usually do this, but...
« on: Jun 13th, 2002, 4:05pm » |
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maybe it will help another supporter who is out there, hitting the wall.
Linda Howell sent this girl to the Family Services Team (thank you Linda  ) and she and her family are going through Cluster Hell right now. No names are needed, and I've made this text more generic than what I sent her, but I think it's important for other supporters out there to see that we all need to be strong for our sufferers.
Sorry it's long - but I'm long-winded, so deal with it. 
OK, Mrs. Supporter - time for you to toughen up and take charge. I've been exactly where you are right now and the ONLY - repeat ONLY - way I got through this was to find my own balls - it's hard, it sucks, but it WILL get you through this. Not an easy thing to do, but life is giving you LOTSA lemons right now, time to make some lemonade now, girl!!
Grab hubby by the ears, set him down in front of the 'puter and explain to him that he is NOT going to die from clusters. No one ever has. He needs to know that he is not alone in this. When our sufferers reach that point, they looks to us for stability and sanity, because they usually have none left within themselves. But if your hubby sees that strength within YOU, he might catch the bug and start working a little with you to help himself. He needs to accept that this will NOT kill him, that he is NOT the only one going through this, and that he has to take an active part in his recovery. Attitude is everything with clusters.
Yes, he's going to get cluster attacks through the day and night. But, if he can learn to stay as calm as possible through an attack, it will be over MUCH faster and the pain won't escalate as high - that's why the ICE is so good - it forces him to stay calm. Frozen peas or frozen corn does the trick because they are both pliable and he can mold them to the shape of his face, where the pain is. The brain reacts to the cold stimulation on the skin and temporarily 'forgets' about the pain in that area. Please try it.
[this particular sufferer is not able to afford meds, so I've suggested trying the water treatment]
Print out the water treatment stuff - read it to him or let him read it. It really CAN work, especially if he's not on any other meds. MAKE him drink the water. Just watch the clock and go get him a new glass when it's time. Water is free. So, he pees a lot - big deal, right?
Another thing you can do while he is under attack is watch the clock. You probably know how long his attacks usually last, so you can coach him through it - only 20 more minutes, honey - only 15 now... that really helps some sufferers to know - they can't focus enough during attack to be able to figure that out for themselves.
What is MOST important though, sweetie, is that although YOU are becoming captain of this ship, you need to remember that you need to save time for yourself or you WILL lose your mind. Even if it's just 20 minutes in the bathtub by yourself, if that's the best you can do - it's 20 minutes of freedom AWAY from clusters. It rejuvenates you, trust me. Go for a walk, have a workout, anything - just MAKE time for yourself. Do deep breathing, yoga - whatEVER - but do it. YOU need to be strong for him. Yes, you're allowed to cry too - we all do when the cluster beast visits. Just don't let him see that he is scaring the hell out of you. Because then, he will have guilt to deal with on top of everything else, right?
I realize that he probably will fight you on the water thing, or your new found attitude, but you just have to steel yourself against it. When folks are in a cluster attack, it's like they become possessed by the Devil. It's a LOT easier on you if you can remember that. They are NOT themselves when they are under attack. Just let everything roll off you, don't take anything hurtful they say seriously. Be forgiving. They are crazed with pain and really shouldn't be held accountable at a time like that.
Lady, you CAN do this - it's important that you believe that. YOU need to step up to the plate and just TELL him this stuff. Be strong, girl - I'm out here pullin for ya...sending you all the energy I have to get through this. And...I have every faith in you that you WILL get through it. When he misses that first expected attack, - and then suddenly you realize that he's missed TWO...it's the most wonderful feeling in the world!
You've got a long hill ahead of you to climb, but keep measuring how far you've come up it. Don't look ahead to how high the hill is, look backwards to how far you've come.
Okie dokie?
Sorry, if this is a little brutal. But, a good kick in the ass sometimes is all it takes to get things moving in a better direction. Know that this kick I'm giving you is sent with love and soft boots, ok?
Tight hugs, fellow warrior.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Margi
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Nuthin like a good neck rub!
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Re: I don't usually do this, but...
« Reply #1 on: Jun 13th, 2002, 9:04pm » |
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I'm smiling big here - just posting this gal's response to my letter. She's a star supporter, folks. I love it when this happens!!
"Margi,
After an afternoon spent crying hanging up on nurses yelling at doctors in a crazed crying fit.. I needed your kick in the ass. You have given me the energy I need to help James. I guess he and I just didn't want to except that this is what he has but now we see that it is and there is nothing we can do about it.
I needed your advise thank you so much for taking the time to dish it out. Today has been super hard and I was just about to the point of saying fuck it, acually I did and hung up on the nurse at the doctors office. I have been carrying such intense anger and sadness your letter was such a wonderful pick me up.
You have given me the extra boost i need to get off my ass and be more supportive. I will push the water for sure starting tonight! I love the counting down until they are over.. i will definatly do that. I hate to even talk about another one. GOD i would do anything for him to never feel another one again. As you know it hurts so much to see the man you love in such awfull horrific pain. It just doesn't seem like the world we live in today .. doctors, hosp. ect. would make a person live through pain like that.
I am at the point of loosing it with the whole medical field."
I'm so PROUD of her!!! And, I'm sure not posting this to blow my own horn at all...I hope no one thinks that. The purpose was to show new supporters out there that it IS possible to get through this together.
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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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Linda_Howell
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Hearing is one thing. Listening is another.
  
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Re: I don't usually do this, but...
« Reply #2 on: Jun 14th, 2002, 5:18pm » |
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AND THIS IS WHY WE LOVE MARGI!!!!!!!
Thank you my friend. I see you found the words. The right ones at that. You always seem to know when someone needs a kick in the ass and you always seem to know when someone needs a hug. Linda Howell
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Margi
CH.com Moderator
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
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Re: I don't usually do this, but...
« Reply #3 on: Jun 14th, 2002, 8:36pm » |
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pssst, Linda....I just heard from Dana and JAMES HAS GONE 32 HOURS PAIN FREE!!!
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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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Not4Hire
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...WAS PF since Oct.'02, but ...oh my...(CBusters)
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Re: I don't usually do this, but...
« Reply #4 on: Jun 14th, 2002, 8:39pm » |
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Damn........... ladies......I am just without words.......Thank you. You ARE without peer........can't wait 'til MY support gets here...can ya translate that into Spanish for me???
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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Margi
CH.com Moderator
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
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Re: I don't usually do this, but...
« Reply #5 on: Jun 14th, 2002, 8:47pm » |
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Hey Not?
there are lots of us supporters out here to help you if you need us. You're welcome to hang out in our corner anytime.
We got lotsa tricks up our sleeves.
Sorry, can't help ya with the Spanish though....
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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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Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
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Posts: 6721
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Re: I don't usually do this, but...
« Reply #6 on: Jun 14th, 2002, 9:01pm » |
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32 hours!!!!! Awllllll right!
I'm so happy for James and for Dana I could cry.
They both deserve that rest.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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