Re: Hard to Feel Good -Thanks to Everyone

[Guest guest]

In a message dated 3/26/02 11:03:14 PM Pacific Standard Time,

mgiordano@... writes:

<< but between using exercise as a stress release and working on those quilt

blocks toward a beautiful accomplishment will be so rewarding for all of us.

I am trying to exercis >>

Oh Carol, I try to exercise so I don't have to think about trying to make a

quilt square. Okay Kathleen, You can hit me now. LOL My exercise jar is

filling fast and I can happily say I've lost 10 pounds. ( Don't count the

fact that I've had the flu. LOL) Hopefully it will stay off. I can exercise

longer because I just keep thinking " What and HOW am I gonna make that

square. " LOL I have made up my mind to do it and I will.

I'm so glad that you are part of the group Carol. You are doing so well for

being so new to this. It really takes a toll getting adjusted to all new

things, (sore ears, meds, highs and lows, etc.) You are an inspiration to us

all.

Okay,now we need some input here. What time would be good for westerners and

easterners. I know we won't be able to please all, but I thought if we

picked a time in the morning for the early risers and a time in the evening

for the night owls we might cover all. Maybe even a third time. If we can

catch one out of three it will be a really good thing. We will have the

opportunity to feel connected to all.

Lets here some input and then we can all pick.

Thanks again Carol for the wonderful idea.

hugs

[Guest guest]

Thank you so much for all the input and wisdom you've shared from my post. I was reading tonight in the "Coping with Prednisone" book the part that is the interview with the husband about Genie's behavior. I could be her - I feel "nuts", and my men will attest to that!!! Guess it does go with the territory. I have to learn to be more patient, but even that won't happen quickly enough for me! The strength you all give me helps so much, I know I'll get through this, one baby step at a time, even if it does have to be at a slower pace, like Glenda said. And I'll be so thankful in the years to come that I have had this medication and my RP family to fortify me.

I'm so thrilled you are wanting to join in a group time to stop and hold hands in our minds and hearts. I hope we can find times that will work for us all to pray and have good thoughts together. I'll work on it too, , and hopefully we can find a time(s) that will work for everyone.

To try to get back to a more positive note, how are everyone's exercise money holders filling up? I know this has felt like a rough time for everyone, but between using exercise as a stress release and working on those quilt blocks toward a beautiful accomplishment will be so rewarding for all of us. I am trying to exercise almost daily, and I taught a full hour's class on my Pred and Ultram high on Saturday. My jar is filling up, and I'm saving the change from my guys' pants pockets for my quilt raffle chances.

There are good times ahead for all of us; Carmela, I promise I will keep trying... I love you all!!

Carol G

P.S. Susiecue, good luck with your appt thursday - stay strong and tell that dr what's on your mind.

Sandy, I'm also wondering what"Dapsone Syndrome" refers to. I thought I was allergic to it at first, and now that I'm on an even higher dose, I'm keeping my antennae up for anything to be careful of. Thanks.

-----

Original Message -----

From: Carmela Oliveri

To: Rpolychondritis

Sent: Tuesday, March 26, 2002 10:17 PM

Subject: Re: Hard to Feel Good

Hi Carol and everyoneAmen to that. I know how you feel when one is not sure if the treatment given is the right one, or if the doctor is treating it appropriately or even seriously. three weeks does sound like forever, but you can't let it get to you. easy to say, I know, but one must try.I already think of my RP family often, although I don't post often. if you all want to choose a specific time per week to do this, I'm game. take care and God bless you all.Carmela***********************>>Reply-To: Rpolychondritis >To: <Rpolychondritis >>Subject: Hard to Feel Good>Date: Tue, 26 Mar 2002 09:20:09 -0500>>Hi Friends, I felt the need to post to everyone together today, because I >feel now is a time we all really have to pull together with a very strong >amount of group prayers and warm wishes for all those in need right now >from our online family. We have been having so much pain through loss of >life, anxiety, worry, doubt, fear and uncertainty that it has been hard to >find the positives that we all so desperately cling to through each day.(((some snippage)))_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

In a message dated 3/27/02 3:04:44 PM Pacific Standard Time, judyo_93@...

writes:

<< , as you know, I am NOT a morning person, so for me around 11:00

works (yes I know I am a sleepy head, but I have problems going to sleep, so

waking up early is a big problem).

>>

Judy, refresh my memory, what time zone are you in? LOL What time would that

be on the west coast?

[Guest guest]

, as you know, I am NOT a morning person, so for me around 11:00 works (yes I know I am a sleepy head, but I have problems going to sleep, so waking up early is a big problem). Re: Exercise, hopefully once they figure out what is wrong with my Knee (MRI is tomorrow), they will be able to fix it and I will be mobile again. Right now, it hurts like the devil to walk, so I'm off my feet most of the time! Love, Judy Re: Hard to Feel Good -Thanks to Everyone << but between using exercise as a stress release and working on those quiltblocks toward a beautiful accomplishment will be so rewarding for all of us.I am trying to exercis >>Oh Carol, I try to exercise so I don't have to think about trying to make aquilt square. Okay Kathleen, You can hit me now. LOL My exercise jar isfilling fast and I can happily say I've lost 10 pounds. ( Don't count thefact that I've had the flu. LOL) Hopefully it will stay off. I can exerciselonger because I just keep thinking " What and HOW am I gonna make thatsquare." LOL I have made up my mind to do it and I will.I'm so glad that you are part of the group Carol. You are doing so well forbeing so new to this. It really takes a toll getting adjusted to all newthings, (sore ears, meds, highs and lows, etc.) You are an inspiration to usall.Okay,now we need some input here. What time would be good for westerners andeasterners. I know we won't be able to please all, but I thought if wepicked a time in the morning for the early risers and a time in the eveningfor the night owls we might cover all. Maybe even a third time. If we cancatch one out of three it will be a really good thing. We will have theopportunity to feel connected to all.Lets here some input and then we can all pick.Thanks again Carol for the wonderful idea.hugs

[Guest guest]

Carol G, no one particularly notices my mood swings (the hot flashes and ear flashes keep them all off balance anyway!). My primary problem with Pred is my never satisfied appetite. As the group will attest, I complain about eating the woodwork I am so hungry! It's hard to differentiate between all the problems we all have, so I guess we just have to take it one day at a time (sometimes even one hour at a time!) Hang in there! Love, Judy O Hard to Feel Good>Date: Tue, 26 Mar 2002 09:20:09 -0500>>Hi Friends, I felt the need to post to everyone together today, because I >feel now is a time we all really have to pull together with a very strong >amount of group prayers and warm wishes for all those in need right now >from our online family. We have been having so much pain through loss of >life, anxiety, worry, doubt, fear and uncertainty that it has been hard to >find the positives that we all so desperately cling to through each day.(((some snippage)))_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

I'm in the Central Time Zone, but the time changes in a few weeks. If it is 11:00 AM in Chicago, it is 9:00 AM in California. Love, Judy Re: Hard to Feel Good -Thanks to Everyone In a message dated 3/27/02 3:04:44 PM Pacific Standard Time, judyo_93@...writes:<< , as you know, I am NOT a morning person, so for me around 11:00works (yes I know I am a sleepy head, but I have problems going to sleep, sowaking up early is a big problem). >>Judy, refresh my memory, what time zone are you in? LOL What time would thatbe on the west coast?