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May 7, 2003
Dave add i are going away today to a couple's resort up near algonquin park! we'll be coming home on tuesday. we have our own cabin with a fireplace sauna and jacuzzi! soooo romantic! we're going horseback riding, dog sledding, snowmobiling and skating!

i've been busy this week and haven't been on the computer much. on tuesday i took my eldest daughter (who's now a single mom) out for lunch and then shopping for her apartment. yesterday i took her grocery shopping. she doesn't drive, but she only lives about 5 minutes away by car.

i tried to get on the forum last night, but i got a weird "debugging" message. i don't know what that's about! glad to see everthing is normal today! i just finished reading all the new posts! carol i sure hope you feel better soon! strep is horrible! al i hope everything goes smoothly with your bipap and tests and that everything will be completed before you go away!

love to all,
Hi debbie and all tHe rest from west park reHab.. i used tHe bipap last nigHt and a bit today. tHey are trying to find tHe rigHt lengtH of inHale and exHale cycle and tHe rigHt number of breatHs per minute for me. Hopefully i will be used to it by next week and Have my own macHine to take away. tHey are jumping tHrougH Hoops Here and at tHe society trying to get it all togetHer for me. don't know if everyone gets tHis kind of treatment or if it is just my natural cHarm but tHey sure make you feel important Here. i'm staying tonigHt (friday) and going Home for sat and back on sunday for as long as it takes. guess i'll Have to Help son-in-law blow snow tomorrow. after next week i won't Have to worry about tHat so tHat is a bonus. i'm not really gloating even if it sounds like it. so as you can see i'll still be cHecking in so keep warm and take care everyone.
Hi al and debbie,

glad to Hear tHat you are getting tHe Help you need for your bipap macHine. it is really a welcoming device wHen you are Having trouble breatHing. it will certainly let you sleep for longer periods, and you will not feel so worn out during tHe day. Hope you Have everytHing in place for your vacation. Hope you Have a wonderful time, good weatHer, good food, good drink, and good company. sounds like you will. lee sent me your agenda for tHe next little bit, and you are going to be soooo busy. remember to get your rest. it is so important. Henry never Had any trouble sleeping on His back or sides. He never felt tHe cHest compression tHat so many of als patients Have. i guess He is lucky. He is now Having some major problems at nigHt. He Has to be turned more often. He also Has some major pressure points, on His elbows, ears, lower back, and sHoulder blades. He Has not Had any open sores as of yet, we Have a special oitment for skin breakdown, and it seems to Help, for now. He breatHes a lot Heavier now at nigHt, and wakes up every Hour or so. His body temperature seems to flucuate quite a bit at nigHt, so i am eitHer pulling tHe covers off or putting tHem back on. i tHogHt it was me tHat was supposed to be Having tHe Hot flasHes and Hormonal swings! oH well, we rock on. How are you doing deb? Have you started tHe study yet? i tHink of you often. keep us posted. i am finally starting to feel normal again! tHey all say i was never normal in tHe first place so..... tHey are all so supportive Here ! it took about 2 weeks before i could swallow and not feel any pain. i was lucky tHat Henry never caugHt anytHing from me. knock on wood.. ted, How are you doing? surviving tHe cold? i Have 2 pairs of socks on, looks funny witH my fur coat, but i Have to stay warm. anyway, take care al, Hope everytHing works good for you and you start to get better sleeps and better breatHing. lee, take good care of Him you got a gem tHere!
Hope everyone is doing okay, and i will talk to you all tommorrow.

lots of love and stay strong..... and warm....brrrrrrr

carol xoxo
Hi all:

i tHink deb Has tHe rigHt idea witH tHis weatHer. for tHose of us wHo can't escape winter... we sHould embrace it and Have fun! is casHman covering tHis trip to algonquin?
carol, i finally gave in on tHis sore tHroat tHing and went to tHe clinic for some drugs. tHe tHroat inflamation was affecting my ears and tHat's not a good tHing for us avaition types. multiple ear muffs won't cut it! glad you're back to your normal, abnormal self.
al... Happy snoozing!
bundle up everybody...warm up you snowblowers and enjoy some cognac!


Thanks guys. i'm home for today and back to the hospital sunday night for probably another 3-4 days, hopefully i'll have this sorted out by then. the machine takes quite a while to get set up to my breathing patterns. they've tried about 5 or 6 different ways as far as inhaling exhaling and rate of breaths but we still haven't got it matched to my pattern of breathing. sounds easy enough to do. watch me breathe : count the timing in seconds and punch it into the machine; not quite as easy as it sounds. there are a few variables there that make it harder than it sounds. i've got a good group of people in my room and a great staff; and as a bonus they have a pub night on tuesday with beer and wine. right up my alley as most of you know. the bipap does make it easier to breathe though. even with the timing a little off i can tell the difference. i can lay on my back and left side which i haven't been able to do in months. sure takes some of the pressure off my right side which was getting sore from laying on it all the time. so that's what's happening to me these days. lots of fun but no big deal. day to day as i say. take care don't hurt yoour backs shovelling.
Hi, well it sounds as if everyone is fairy reasonably well with tHis cold weather. debbie is sitting in front of a nice warm fire place about now, tbear with His cognac to cure His throat, and al getting ready to head back to the hospital. but al, it sounds great, and will give you some relief, and hopefully more rest. good for the body all the way around, and we will be interested to hear how it does make you feel throughout the day. thanks for the joke sent, i loved it..and will forward it on..however, it looked a bit like myself before my morning coffee. if you didn't already, share it with those on the forum you have addresses for, i bet you carol will wet herself laugHing.
carol, where do you find your energy? it seems bottomless especially if you rarely get more then a few hours sleep, and you seem to always be worrying about the rest of us. i was laugHing about the hot flashes..but seriously, when do you sleep? i may have missed some points along the way in the forum, but do you have help coming in for you and henry?
take care to all, and stay warm.
Hi gang -

i'm surviving tHe snow and cold. Had to go out and sHovel tHis morning before i can Head out to cHurcH. luckily, it's nice fluffy snow...perfect for tHe skiers i tHink.

tHeresa, glad my tHougHts could Help a bit. i keep forgetting to cHeck tHe name of tHe book (it's at work). but, i'll get it soon. i Haven't seen any postings in response to your denial question. i tHougHt it was a good one....i guess no one wants to toucH tHat! :)

carol, glad you're up and about again. just in time for tHe cold weatHer. i'd also like to know if and How you get any sleep. i don't tHink i'd manage, but i guess you do wHat you Have to. someHow we get tHe strengtH to do wHat we need at tHe rigHt time.

al, glad tHe bipap tHing is working, at least somewHat. i can only imagine wHat a joy it must be to sleep in a different position!

tbear, fisHer, and all tHe new people, Hello and welcome. i'm glad to see new people joining Here. -melissa-
Hi dear friends,

sleep, mmmmmmm, you do not know How mucH you miss it until you do not Have it. and i do not mean tHat ligHtly . i Have not Had a full nigHts sleep since last june. tHis is How i get my "rest". we get Henry ready for bed at about 11pm. we get into bed, Hooked up to His macHines, feeding pump, etc. creams, donugHts, takes about 25 minutes. i tHen go to bed witH Him. He usually falls to sleep rigHt away, because of tHe pain meds we give Him. i fall asleep too. (usually) depending on How His breatHing is. He usually wakes up at about 130am for some reason. cold, Hot, move arms, move legs, lift Head, fix pillow, and tHen tHese procedures go on all nigHt long. He is awake usually every Hour after tHat, sometimes less, sometimes more. He wakes up every morning at 6 am. to pee, and to Have more pain meds and to take off tHe feeding tube and pump. of course i Have to get tHe pee bottle and get His pain meds ready and syringe tHem into His feeding tube. tHen i Have to rearrange His legs, arms, Head etc. fix all tHe covers, and tHen i let tHe dogs out for a pee, and take care of tHat myself. i tHen crawl back into bed about 630am and my alarm goes off at 745am. tHen i start my day getting ready for work. am i tired? tHat is an understatment. However, i seem to catcH naps after work, wHen Henry Has His naps between 4-6pm. i find i can kinds catcH a little nap wHen He is watcHing tv at nigHt too. so, my life is about catcHing naps and learning to sit and rest wHen i can. it is like Having a baby only worse. i love Him, and i will continue to do wHat i can. we Have to psws tHat come tHrougH tHe week for 3-4 Hours per day. so tHe days i am off and tHey are Here, i rest tHen too. inbetween doing laundry and cleaning. tHis is our normal. i know tHat it sounds awful, but wHen Henry smiles and says tHankyou after i Have fixed Him up in tHe morning, and says love you, its all wortH it. anyway, you do wHat you Have to do. our son mike Helps out about 80% of tHe time too. we are so lucky to Have tHe kids Help and support. gotts fly, my breakfast is ready and i don not want my tea to get cold.

a day in tHe life.........

love, carol
... ahhh memories of long ago!
Hey ted,

yeah, not that tHey are bad memories, just reminders that you did what you had to do too. we sill be rewarded richly one day. hope you are feeling better, that darn strep throat hangs on and on. hot tea, and lots of tylenol. hang in tHere my dear friend, do you want me to come down tHere and rub vicks on your cHest? ha....

love ya... carol
... i got the drugs on thursday so things have cleared up... but my mind is starting to wander... better you should power nap!

i was kind of hoping carol would get a chest cold so i could offer to rub vicks on her chest. god ted you must really be feeling bad to not pick up on that one. hope you get better. carol in all seriousness i don't know how you do it. i hope and pray that lee is up to the challenge.
Oh al,

i needed that laugh.! yeh, ted, yOu were a little slOOOOOw. ha. Oh well, must still have sOme cOngestiOn in the head.! i hate tO break it tO yOu al, but i dO nOt have big hOOters ! my girlfriend last night said my chest reminded her Of chick peas! what a cOmpliment, but, as far as i remember when they are sOaked, they swell up , right? maybe vicks is the answer ! yOu guys are gOOd......

hOw did yOu make Out al? and if yOu reply back "with yOur hands" i'll knOw yOur alright !

thanks fOr the laugh !

ps. lee will dO Okay. she will dO what she has tO dO. with help, lOve, and suppOrt. yOu bOth will be fine. we are.

lOve, carOl
Oh my gOOdness,

i am experiencing a case Of the multiple big O's. help !


al and ted, lets see where yOu take this One !
Hi guys:
not slow... cautious! tHat, and my friend tHe professor Had already volunteered to do tHe vicks tHing... but tHat's anotHer message for a different time.

....tHe rub down is all good no matter wHat kind of "ointment" you're using and How it's getting tHere........Henry must be far more talented tHan i can imagine oooooooooo!

(Hope tHese don't get edited!)
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