Old 06-13-2011, 04:55 PM #1981 (permalink)
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Default Re: Come For Tea

Liz, I did 4get 1 thimg....thje new pic, R U tel;img us UR thje Ladu who is sleeoimg withj the bloe druyer?
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Old 06-13-2011, 05:07 PM #1982 (permalink)
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Hi All,
Everyone here seems to be so caring and loving toward each other. After reading through so many of your conversations I felt comfortable here with this group. If my questions to you are posted in the wrong place I apologize and I will repost where you direct me. My lung function is at 32% and I have a BiPap machine. I am on my third mask trying to get something that fits and will work for me. Apparently I have a tiny face. I just received the Mirage Liberty mask (after reading about it on here) and I think the fit is good. My problem is I can't keep up with the pace of the breathing. I think my natural breathing now is much slower than pre ALS. Is it possible that the machine is expecting me to breathe faster than I am capable of? I feel like I am suffocating and it causes me so much distress that I give up and take it off. I have looked through BiPap posts but I didn't see this type of problem addressed. The company that supplied me with the machine have been useless in helping me. I appreciate any help.
Linda
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Old 06-13-2011, 06:00 PM #1983 (permalink)
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Default Re: Come For Tea

Hi Linda, welcome . If you post your questions under general discussions or people with ALS you will get tons of helpful advice from people on bipap or their Helpers. Hope that helps. However if you want to talk about groundhogs, difficult teenagers and knickers, then this is a good place. You just need to be able to laugh and hug to come join us.
Aly
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Old 06-13-2011, 06:11 PM #1984 (permalink)
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Welcome Linda! I'm sorry but I don't know much about anything. I was just diagnosed in February and am pretty much new at all this. Yes, what Aly says is true about posting and also about contacting your local ALS Group. In both places you'll find many helpful folks. Wish I could help but can only offer cyber hugs for you. Come back any time though!
Hugs,
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Old 06-13-2011, 06:19 PM #1985 (permalink)
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Linda, you need to contact your doc to have them send an order to the RT to adjust the machine. Explain your problems with the BiPap to them. You can't get your settings changed (at least in our state) without a doc's orders. Sometimes, it takes a little tinkering with.

Also, are you just trying to use it at night? If so, you might want to try using it while watching something really interesting on TV or while listening to some very relaxing music. That might help you get used to breathing with it.
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Old 06-13-2011, 06:24 PM #1986 (permalink)
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Hi there Linda, I'm no expert on bipap whatsoever but have been asking similar questions lately on behalf of my pals. I have learnt that if either the settings (ipap /epap) aren't right or the rise time out of synch then yes it will be uncomfortable. Sorry the company haven't been of any help. Maybe your respiratory doc? As I'm writing I see Alys post come in...I posted a thread recently on bipap and did receive a lot of help both by way of posts and pms.

Aly, I also see that our posts crossed. As I was wishing you well for your apt, you were already back home. Yeah for no needles! I've enjoyed the groundhog, mole, vole etc conversation. Don't see those in our neck of the woods but foxes and badgers yes. We have our very own kind of rabbit too, the Irish hare, larger, less cutesy, lots of character. Of course we have rabbits too which my uncle on the far tells me are chewing up the place.

Feeling emotional today girls, been a real choccy biscuit with the tea day. Mum has been sick again. Though I know things can change day by day my gut is all screwed up cause I know she's just getting weaker. Trying so much to keep focussed on her rather than on how much I'm going to miss her but tonight the tears are leaking out.

Big love to you all. Thanks for being there.
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Old 06-13-2011, 07:02 PM #1987 (permalink)
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Welcome Linda, and have a cup of tea with us... your choice, though I think it is Peter who prefers Coopers (?)...

Avril, so sorry to hear your Mum is sick again and you are feeling down. I was feeling a bit down this weekend, for no apparent reason except it was raining out yet again. Must be something in the weather systems worldwide, as Meg was feeling down this a.m. as well. Unfortunately I have no words of wisdom for you and your Mum, so all I can do is send you some hugs. Let those tears out tonight, and feel better tomorrow love.

Kim, you're too funny! I saw the commercials about the lady who slept with a blow dryer running the whole night long, but didn't see the actual show. What a fire hazard, I can't believe she's been doing that since she was about 8 years old! What were her parents thinking? Should have sent her to bed with a noise machine, not a blow dryer.

Went and looked at another house today, nice little ranch that someone flipped, but is sitting on the market. Too bad I don't have an offer on mine, so I can move to that one... though it does have a lot of traffic noise from the Mass Turnpike which crosses over the street down the road a bit.

Liz, thank you for coming up with the Caddy Shack title! I could picture the movie in my head, but just couldn't remember the #*#*& name! I hope your back is feeling better, and am STILL waiting to see you with boxing gloves, punching away a giant cigarette box!

So I'm on Day 4 of the Dexpramipexole trial, trying to figure out if I'm actually getting the meds or the placebo! Haven't felt much different but time will tell.

Hey, the Boston Bruins' game 6 of the Stanley Cup is just starting, so I'm going to go watch them... hopefully no Stanley Cup will be seen tonight, as that would be a real bummer to lose at home! I want that to happen at Vancouver. I am old enough to remember the last time they won, my brother had control of the only tv in the house, so I watched it. Wasn't a fan of hockey back then. I wish my sons played, but they didn't exactly have the right temperament for the game. And it's soooo expensive and intensive! The leagues play nearly all year around here!

Enjoy your tea!
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Old 06-13-2011, 07:52 PM #1988 (permalink)
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Default Re: Come For Tea

Avril I wish I could wipe your tears, sorry mum is not feeling well I hope tomorrow is better. Aly I am glad no needles for you, and I hope you get answers so you can calm down...just know we love you. A lady I used to paint with slept with the blow dryer on, she said she was staying at a motel, woke up cause she smelled something, the blowdryer had burnt a hole in the spare beds sheets..lol Linda I hope you get some answers that help...Hey Marta, Ann, Liz and everyone else. Hugs to all!
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Old 06-13-2011, 08:48 PM #1989 (permalink)
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Default Re: Come For Tea

kimberly- what are you trying to say about my new pic? guess it is sorta ugly- will have to find a new one...

Avril- honey I love you so much and I know you love your Mum so much. You just let those tears fall dear... why not? It would be wrong if you didnt feel that way some of the time- if not all the time. Just try to keep in mind how wonderful your are making your Mum's life right now... Know that it means the world to her (and I bet to you, too) and I am also sure that she doesnt expect you to be all smiles all of the time. I pray she starts feeling better sooner than later, and as always- pass along a forehead kiss for me.

Aly- glad the Dr appt wasnt too bad for you. And also glad you got out of Christchurch before the icky happened again.

To everyone else and those already mentioned- Went to Wisconsin Dells today. Its a small town filled with water parks and theme parks. Myself, my daughter, my roomate, her 3 kids and her husband, and a couple friends all went. I went down crazy water slides and floated in the Lazy River. ALso had a blast in the Wave pool and in the hot tub. Had a characature done with me and my daughter. looked horrible- complete waste of $30 that i didnt have. Got nice and sunburned so hopefully i wont be the whitest girl on the planet for too much longer. Wanted to try to go down a verticle slide that has a 75 foot drop, but i got too scared
My roomate and I were going to go on a ride where you lay down on your belly and they lift you WAY high in the air. Then you gotta pull the rip cord and off you fly- like a bird! Or superman, really! But we ran out of time so we will save that for next time.
The biggest accomplishment of my day? I wore a swimsuit in front of hundreds of people for the first time in like 7 years. So Im proud of myself for that.

As for the boxing- havent started it yet. Havent even started the working out. issues with funds and all (nothing new there)
but hopfully i can figure something out soon.

Love to you all
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Old 06-13-2011, 09:21 PM #1990 (permalink)
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Oh Helen how can I enjoy my tea with the Canucks losing! My team is hexed every time they play in Boston. Our star goalie Luongo got the hook and they put Schneider in (cute kid from Boston). So far from this end it is a stinker of a game <g>. Go Canucks! I love hockey Helen but I don't take it as seriously as some. I have neighbors that actually lose sleep over the Canucks losing.

Thinking about you Avril and saying a prayer for your Mum.

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Old 06-13-2011, 09:57 PM #1991 (permalink)
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Hello,
Thank you all for your replies and warm welcome. I will have a call placed to the doctor tomorrow to see about getting my machine adjusted. As for groundhogs not sure about those but we have lots of lizards, snakes and scorpions. Teenagers I have been through that stage and am blessed to say I have two adult children who survived those years and I am pretty of how they turned out. I have a grey hair for every day of their teen years. Knickers, well I don't wear them but I don't knock them either. As for tea, I love my cup or in the winter my pot of tea. I have a sense of humor and always a hug to give and grateful to receive one.
Blessings and Hugs to you all,
Linda
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Old 06-13-2011, 10:00 PM #1992 (permalink)
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Sorry, should have checked my post before I hit send. Meant to say I am pretty PROUD of how my kids turned out.
oops,
Linda
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Old 06-13-2011, 11:18 PM #1993 (permalink)
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Default Re: Come For Tea

Ok question for you Linda........... You wear none? What are knickers in the USA. Here they are just ladies underpants. The mind boggles ,

Avril, like Liz sais , cry it out. Life just sucks sometimes and tears are healing, that's why we cry, gods way of saying he cares.

Liz, you could never be ugly, cause you are just so darn cute. I love the hat! Go the swimming suit. Just rock the look.

I just went shopping. Headache went so off I went. Got my first ever little black dress. Clings a bit, but who cares.was half price so that's good.

After mt Drs appt yesterday, during our special post appt dinner, I mentioned my frustration not doing enough work and maybe I need to go get a real clinical trial job at the hospital, rather than my own little business. Hubby seems to not really want me to work. Wants me to travel and enjoy life........problem is I like the contact with my patients. I get his point though. Not sure what to do, but there must be more Tony life than shopping and chatting on this forum ( not that I mind)? Oh well, I shall sort something out.

Christchurch is worse than I thought. Only reason people weren't killed is because much of the central city is still cordoned off. About half of the buildings need to be pulled down, some fell down yesterday on there own. I told liv to come home, there have been earthquakes all day today. She is going to a meeting at the university this afternoon, exams are due to start next week, they can't study so I don't know what will happen?

Ok off to make cup cakes for Sam to take to school tomorrow, yes the curse continues to be lifted

Love you all, even those that don't wear knickers!
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Old 06-14-2011, 10:30 AM #1994 (permalink)
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Default Re: Come For Tea

Hey, Aly!

Knickers are in the way if transferring becomes difficult. I wore only a skirt and slip during that era. We have to think outside the box with our changing needs.

I am glad you have your little black dress and hope you have occasion to wear it and celebrate life's blessings! I had to say, while you do have Sam, you also might need some grand babies to love on and play with (not in the little black dress!) instead of a heavier work schedule.

Linda, hope the communication works well today and the bipap is fixed just right for you!

Avril, hoping your day is peaceful and Mum is comfortable. Loving and praying for you especially right now.

Liz, yeah for you wearing the swimsuit in public. I'm proud of you! Also glad you had so much fun. I hope your back is 100% now.

Helen, I'm glad you are at least feeling well in the trial so far and hope you continue to (and have the real deal)!

Laurel, sorry about your team...not sure if Helen's team beat yours--not a sports follower but know it can be intense!

Love to all--caregiver due, so must get rolling
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Old 06-14-2011, 11:56 AM #1995 (permalink)
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Default Re: Come For Tea

Aly,
Ha, you must have been taken back when I said I don't wear knickers. In the states they are loose fitting pants gathered at the knee. Ladies underwear, yes I do wear them. LOL.
Linda
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