Old 08-26-2011, 05:50 PM #3166 (permalink)
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Lawd I am tired. long day at Emory. Getting a Bipap, nubilizer, suction, and cough assist machine. Bruce's numbers on breathing were down by about 20%. they said they would have probably been higher, if he weren't so congested like. Strength and all were still pretty good. Still nothing from the supplamental ins. Say a prayer that we will hear something next week. We sure need that ins so we can get the feeding tube put in. Kinda worried about learning to use all this equipment...
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Old 08-26-2011, 06:04 PM #3167 (permalink)
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Glad you're home Joni. Sounds exhusting! All that new equipment sounds like a lot to learn about. Brad's been looking through a catalogue of special equipment and utensils for PALS. I can't bring myself to look at it.

I have my first appointment with my pulmonologist next Tuesday so we'll see where I'm standing. I don't notice any problems with my breathing but we'll see. I'll keep you posted.

Ann, you okay Dear?
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Old 08-26-2011, 08:11 PM #3168 (permalink)
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Hi everyone,
Joni, Take a nice bubble bath and relax. That's a lot of info to process in one day.
Helen, stay safe. I think by the time it gets to you it will be a 1. My family in Long Island and Jersey was evacuated today. Good thing my Dad is here. One less thing to worry about.
Good night all, chai tea time and tv
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Old 08-26-2011, 08:14 PM #3169 (permalink)
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I love you Joni
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Old 08-26-2011, 08:29 PM #3170 (permalink)
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I'm thinking that its going to end up much ado about nothing in my area, just like this week's earthquake... they felt it in Boston, in Springfield, all the way up to Canada, and we didn't feel a thing! Have to bring all the summer crap in and probably won't get it back out for Labor Day, oh well!

They say to tape up all the windows and stuff... IMPOSSIBLE! Most have been here over a hundred years, guess they should make it through another couple of days. I am getting prepared, but not particularly worried at the moment, these things have a way of fizzling out when they hit our colder water, and the most recent track brings it west of us. I'll probably lose electricity (better charge up the batteries on everything!), and no internet... and tv... lucky for me I have a portable dvd player.

On another note, I saw my SIL today, she's moving to FL on Monday, weather permitting... My brother and nephew will be going down in about 6 weeks. She told me to do Reiki 2X a day, that she could definitely feel it when I walked in the door. Don't think I'm nuts or anything (well, you probably already know that I am!) but I highly recommend learning it to help with our symptoms. I can tell the difference in myself physically and emotionally when I don't do reiki for a day or two.
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Old 08-26-2011, 11:57 PM #3171 (permalink)
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I do hope it's much ado about nothing. It's been on our news constantly. Will be praying for a downgrade.

Join. You must be mentally and physically knackered.I agree a nice bubble bath, glass of wine, chocolate hmmm anything else nice that calms you.

It been soccer day and I got yelled at by the ref. Upset me all day. The ball was obviously out and it hit me so I put my foot on it and stopped play. He sais that it was not out, as did his loud mouthed English wife ( who deadens you with her yelling). Guess what, it was their son ( ref and foghorn lady) who's son had kicked it out. I was so humiliated, but it was the third ball to go out and they had done nothing about calling it. I hate watching dumb soccer, now even more. Only 2 games left in the season yay!

I managed to clean up all the feathers from Rubys duvet destroying episode, by vacuuming them up, I even vacuumed the lawn, must have looked ridiculous , but worked!

Sleep well everyone.
Aly
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Old 08-27-2011, 07:45 AM #3172 (permalink)
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Sure hope everyone is staying safe! Let us here from you friends so we will know you are ok. Liz, sweetie I Love you too! Marta I think anything to make your life easier would be good. You know I hope your breathing is still great! Yesterday at clinic, I watched this older man, he was in the wheelchair, but still talking. He was so very nice and gracious, was asking everyone how they were, and just smiling. He kinda looked and acted like Joel. Aly bless your heart, hmm my son and his said they were getting Bruce a foghorn to blow when he gets excited watching the football games. Looks like I might be wearing earplugs..lol
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Old 08-27-2011, 08:00 AM #3173 (permalink)
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Aly, you should have hit the stupid ref with your cane... it's like those "rental" cops at the mall... give them a little power and it goes to their heads. Seems to me the rules are if it goes out, the play is stopped. And if it hits a spectator, generally speaking you can be guaranteed that it was outside the line! Wow.

I'm pretty sure we're going to lose power over the next 24-36 hours, so don't worry if you don't hear from me, I'm sure the storm is going to be a lotta wind (sort of like that ref?) and rain, but probably no worse than what we get most winters, and without the SNOW! Sending out the kids to bring in all the summer stuff off the porch and firepit area, and guess I'm going to have to take my portable ramp off the porch. Will probably just lay it flat on the porch or underneath it for now, it should be fine with the wind.

Talk to you all later today! Have a good one...
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Old 08-27-2011, 08:00 AM #3174 (permalink)
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Aly, you should have hit the stupid ref with your cane... it's like those "rental" cops at the mall... give them a little power and it goes to their heads. Seems to me the rules are if it goes out, the play is stopped. And if it hits a spectator, generally speaking you can be guaranteed that it was outside the line! Wow.

I'm pretty sure we're going to lose power over the next 24-36 hours, so don't worry if you don't hear from me, I'm sure the storm is going to be a lotta wind (sort of like that ref?) and rain, but probably no worse than what we get most winters, and without the SNOW! Sending out the kids to bring in all the summer stuff off the porch and firepit area, and guess I'm going to have to take my portable ramp off the porch. Will probably just lay it flat on the porch or underneath it for now, it should be fine with the wind.

Talk to you all later today! Have a good one...
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Old 08-27-2011, 08:01 AM #3175 (permalink)
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arggghhh, why did this give me the error message, and then post 2X? Sorry...
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Old 08-27-2011, 08:23 AM #3176 (permalink)
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hello gals and guys....in need of a comfy cup of tea with all of you. So I am snuggled in my lounge chair using my iPad for the first time. Pretty cool! Just a light touch is all it takes....I am kind of nervous as I am flying to Fresno tomorrow to try out for the Dex. Drug Trial. Pray that I pass the breathing test so I can get in. This drug seems to be helping als folks and I would like to have a bit more time on this planet to love more.
A good friend on the forum told me I was not yet complete as "perfect love casts out all fear"....he right about that. I am trying to let go of fears and love in the now, right now....so I want each and every one of you to know that I have grown to love you...really each name on here is familiar to me. It is a wonderful thing, dont you think?
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Old 08-27-2011, 09:40 AM #3177 (permalink)
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Hi everyone,
Sequoia, I can't agree more. Keep us posted on the Dex screening. The best of luck. you'll do great.
Off to the mall today with Nina and her wallet full of birthday money. She was 12 on Thursday and everyone sent her cash. Lucky kid.
Check in with you all later.
Susan
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Old 08-27-2011, 09:57 AM #3178 (permalink)
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Helen stay safe!, Sharon you too, and I sure hope you get in! Susan sure wish I had some money, and I would come hang with yall today..
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Old 08-27-2011, 10:53 AM #3179 (permalink)
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Sequoia, that's great news for you going to Fresno for the Dex trial... keeping my fingers crossed for you!
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Old 08-27-2011, 01:15 PM #3180 (permalink)
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Wow, no wind yet, but it just started POURING out... tiny sprinkles, then thunderstorm and monsoon rains... think I'm going to go take a nap.
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