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athos
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Can't deal......
« on: Oct 16th, 2004, 8:03pm »
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Damn this soap opera life......
 
I can deal with everything except......  How this is affecting Kira my 10 year old and Connor my 6 year old....
 
Today there was a church picnic...  I have been doing pretty good, couple hours out at a time.  But it is till 100 degrees here that zapps it all out of me.
 
But... I dropped like a stone again.  Kira is so concerned and scared.  She can’t eat, she is always checking to see if I am ok.  I decided to leave and go home and let the kids stay and play without having to worry about me....  This is not supposed to happen until I am 80 on 36.
 
Some days are better than others, well nights...  If go out in the days I am hosed.   The other night I was able to play for a couple of hours and it was nice... did too much and paid for it for 3 days.   Connor told me that it was the best day in his life.
 
 
Thanks.....  needed the outlet.
 
 
 
All better now....  Putting the mask back on
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nani
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Re: Can't deal......
« Reply #1 on: Oct 16th, 2004, 8:09pm »
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It's hard on the little ones, but they're tougher than you think. Just the other day, my 8 y.o. had a friend over and I got hit. The friend was a little freaked out and I heard my girl tell her... "Oh - nani gets cluster headaches, they hurt really bad for awhile, but she'll be ok." Try to let them know that even though it's scary, you'll be ok and make sure there's somone they can talk to if they need to.
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Re: Can't deal......
« Reply #2 on: Oct 16th, 2004, 8:43pm »
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Nan is right. Kids are tougher than you think. The thing is: Stuff that happens to dad isn't strange or out of the ordinary. Whatever he goes through, in some way is "OK" with them.  
 
Strange I know but true.
 
Hang in there.
 
Charlie
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Re: Can't deal......
« Reply #3 on: Oct 16th, 2004, 8:52pm »
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What both Charlie and Nani said is very true.  It's just an accepted part of their world.  Sad as that may be.  Your kids will do just fine.  They'll be thrilled when you can spend time with them and even as young as they are, they also seem to sense when you can't.
 
Don't beat yourself up over something that you can't control.  That won't help anything except to add more stress to your life.
 
Carol
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Re: Can't deal......
« Reply #4 on: Oct 16th, 2004, 8:58pm »
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Hang tough dude, wishing you PF days ahead
 
Sean........................
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Re: Can't deal......
« Reply #5 on: Oct 16th, 2004, 9:05pm »
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When Colin (6 years old and my only child) saw the o2 tank last night kinda freaked.  My husband and I showed him how I use the mask and reassured him that Mommy just gets bad ha's called clusters and that the tank was to help.  I hope that he understands, but he will just stay quiet about it for a few days and then ask questions.  I think just being honest with them and trying to explain in simple words is the best.  Don't try to hide it from them.  I feel like it's the same as if I had cancer of something, I would be honest and explain it the best way I knew how.  Just keep reassuring them that you are ok and that it has nothing to do with anything they have done or are doing.
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BarbaraD
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Re: Can't deal......
« Reply #6 on: Oct 17th, 2004, 6:22am »
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Everyone is right here -- don't beat yourself up about this - it only makes it worse on YOU. The kids will adapt.
 
Our little Caleb (grandson) has figured out that when Granny starts rubbing her ear she has a headache. He's gotten to where he goes to the closet and drags out the O2 bottle and starts saying, "Granny breathe, Granny breathe". Then he goes and sits in Papaw's lap while Granny breathes. When Granny gets over it, we go back to business as usual. He pats me and says, "Granny ok now?" He's 3.  
 
I wish there were a simple solution for all of us but there's not. We're afflicted with a disease we can't control or help. It's not our fault - we're just the chosen ones.... We can't help it and we can't beat ourselves up because of it. We just have to find ways to adapt our lives around it. That's the hard part. Adapting.  
 
Enjoy the PF times - the kids will understand the others.  
 
Hugs BD
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Re: Can't deal......
« Reply #7 on: Oct 18th, 2004, 12:53pm »
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Like everyone has said, the best theng to do is just be honest and up front with them.  They'll understand.
 
It sucks when you get hit trying to do stuff with the family.  The kids are smart enough to handle what's going on.  When I went to the zoo with the grand daughter (Sahara) this past Saturday, I got hit.  Held it together long enough to get to a restroom and shoot the trex.  The wife and daughter-in-law entertained Sahara while I took care of business.  We spent about 4 hours walking around and all had a blast.
 
As far as the O2 tanks, I showed Sahara the tank and let her touch it and even put the mask on her face.  She had fun and is not scared of it at all.  I even took an old mask and removed the tube and bag so she could have her own mask.  The have been times, when I am sitting sucking O2 that she has sat in my lap with her mask, too.  It's so cute.
 
Hang in there man.  It does get bad, but it also gets better.
 
 
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Re: Can't deal......
« Reply #8 on: Oct 18th, 2004, 1:08pm »
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on Oct 17th, 2004, 6:22am, BarbaraD wrote:
Everyone is right here -- don't beat yourself up about this - it only makes it worse on YOU. The kids will adapt.
.....
Enjoy the PF times - the kids will understand the others.  
Ditto! Nothing else to add.
TomM
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Re: Can't deal......
« Reply #9 on: Oct 18th, 2004, 1:25pm »
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Prayers and vibes heading your way athos.
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