Re: Hard to Feel Good

[Guest guest]

In a message dated 3/26/02 6:37:32 AM Pacific Standard Time,

mgiordano@... writes:

<< I wish that there was a certain time in the week that we could choose,

that for just a few minutes, or even one, that we could designate as our

group time to stop what we are doing, and all be thinking of each other and

our needs en force, at the same time. To know we are all thinking of each

other at that exact time each week might give us more fortification for

endurance. >>

Carol, I think this is a wonderful idea. If we could just pick two times for

a day and hopefully we can make one of the times. This is a very strong

group in good thoughts and prayers, and I have no doubt that this has gotten

all of us through some tough times. I know it has for me. If there are any

suggestions as to times for the day, please just post it. Maybe we can find

a couple of times that will be good for everyone. With the time difference

we would have to work on that. LOL

Carol, I know how you are feeling about your dr visit. Think we have all

been there before. I think it is called frustration! We are all in a hurry

and want to get on with getting better. This diease is a road of ups and

downs. Think possitive that the increase in Dapsone will take effect and

that then you can decrease your pred. Remember, we have to take " Baby

steps " with this RP. I had to up my pred yesterday too. One step forward

two steps back. LOL well, I'm inching my way there one way or the other.

We all love to hear from you so please post to the group any time you want.

I think Carol Arnolds death has hit us all very hard. It always does. But

now we have another reason to work harder to find that cure!!! Lets do it

for all.

Know I'm thinking of you and keeping you in my prayers.

hugs

[Guest guest]

, Hi, I am a new member. Yes, the two times a day to pray for each other is a great idea, I am all for it. I live in Miami, Eastern Standard Time, in case that helps. I teach from 8:00 to 12:30, so it'd be hard to pray during those hours.

I saw you mentioned dapsone. Dapsone never worked for me, I took it for three years for nothing and finally I became allergic to it. Methrotexate didn't either. The combination of Prednisone, Arava and Colchicine has done wonders, in case this helps anybody. I've gone from being incapacitated to being able to function. The only times I get flare-ups is after I have an infection.

[Guest guest]

Carol, thanks for this post. You are a strong person, I can tell. I think the time together is a great idea. Just let me know. You are in my tho'ts and prayers. May you feel better soon.

Love and God Bless',

Jo

Hard to Feel Good

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. I have come to realize that anyone who takes the wellness of life for granted is being cheated of knowing it's fullness through having friends and loved ones to support and be supported by in times that have less than that feeling of wellness. Maybe it is fitting that through this Easter week we focus on what we've been given, each in our own way, through our religion or another positive force, that gives us the strength and hope for a fulfilling future. This will be my prayer throughout each of the coming days and weeks. I wish that there was a certain time in the week that we could choose, that for just a few minutes, or even one, that we could designate as our group time to stop what we are doing, and all be thinking of each other and our needs en force, at the same time. To know we are all thinking of each other at that exact time each week might give us more fortification for endurance. This group is so close that if we could touch each other that way, it could feel like we're all holding hands for one minute each week and infusing our strength into the whole group. If you think that is something we could try to do, or maybe it has been tried before, let me know.

I personally had a difficult visit with my rheumy yesterday. It wasn't dramatic or terrible, and I still think he is knowledgeable and has my best interests at heart. I was just struck by the timing of the process, from the disease's first symptoms, which in my case was almost 5 years ago, to diagnosis, which was 2 1/2 months ago for me, to yesterday, when I felt like I was being helped, but feeling frustrated that the disease control wasn't better and I wasn't able to move forward with my life as quickly as I would like. I am being taught another lesson in patience, which I have several times over these past 5 years, and I wish this time I could feel more positive about it all. For a quick explanation, I had to be put back up to 45 mgs of pred 2 weeks ago for possible disease related symptoms. Thinking that could be reduced now because the symptoms are starting to lessen, I was told no by my Dr. Furthermore, he wants me to increase the Dapsone to 150 from 100, and stay at these levels for 3 weeks till I see him again. Now three weeks isn't a long time in the grand scheme of things, and I understand his reasoning, but right now it feels like forever. I guess I have been focusing on this timing issue since seeing him, and wondered how the timing of it worked out for any of you. I know each person's circumstances dictated much of this, especially if there was airway or other serious involvement, but I'm still curious to know. Was your Dr more aggressive, and did you feel justified by how that was handled? Should I feel like I should be trying different meds by now, I don't know if it's too soon or not? I just don't know, and I hate that feeling.

I am feeling inspired, in part by Susiecue and Sharon, who are ready to head to Mayo and figure it out head on. I was even thinking about finding out if we could get a group rate and all go together - wouldn't that blow them away! I am just very confused by the best road to take, as we all are time and again. I don't even think Mayo would be good for me right now in the timing of the rest of my life, but I'm not even sure how to look at that. We each have our own circumstances, and our own ways of dealing with things, but we are all bound together by a common goal - to live our lives as best we can for ourselves and those we care about. I hope we can all come to better peace of mind this week and find answers to our questions and information, if not solutions for our problems.

I am praying for each of you for those things, and I know somehow we'll all find the strength to get us through. I hope you all have a calm and comfortable day, it's cold and raining here, I'm sure part of the reason it's hard to feel good. Let's look toward warmth, sunshine and happiness in the days ahead.

With Love,

Carol GDISCLAIMER!!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]

, please just don't make it before 9:00 AM CST! OK, I don't do well trying to function before then! OK? Love,Judy Re: Hard to Feel Good << I wish that there was a certain time in the week that we could choose,that for just a few minutes, or even one, that we could designate as ourgroup time to stop what we are doing, and all be thinking of each other andour needs en force, at the same time. To know we are all thinking of eachother at that exact time each week might give us more fortification forendurance. >>Carol, I think this is a wonderful idea. If we could just pick two times fora day and hopefully we can make one of the times. This is a very stronggroup in good thoughts and prayers, and I have no doubt that this has gottenall of us through some tough times. I know it has for me. If there are anysuggestions as to times for the day, please just post it. Maybe we can finda couple of times that will be good for everyone. With the time differencewe would have to work on that. LOLCarol, I know how you are feeling about your dr visit. Think we have allbeen there before. I think it is called frustration! We are all in a hurryand want to get on with getting better. This diease is a road of ups anddowns. Think possitive that the increase in Dapsone will take effect andthat then you can decrease your pred. Remember, we have to take " Babysteps" with this RP. I had to up my pred yesterday too. One step forwardtwo steps back. LOL well, I'm inching my way there one way or the other.We all love to hear from you so please post to the group any time you want.I think Carol Arnolds death has hit us all very hard. It always does. Butnow we have another reason to work harder to find that cure!!! Lets do itfor all.Know I'm thinking of you and keeping you in my prayers.hugs

[Guest guest]

Carol G, I understand your frustration, we have all been there! We want results and we want them yesterday! Unfortunately, RP seems to have it's on time line. Your dr is probably correct in his assessment, if he lowers the dosage the symptoms have a good chance of coming back, which would defeat the purpose of being on them if the first place! I know the need to do SOMETHING! I didn't go to Mayo, I went to Boston to see Dr. Trentham. Basically he told me that my doctors course of treatment was exactly what he would do, and I felt so much better. And my rheumy must be doing something right, it's been almost a year (knock on wood) since my last flare, so something is working! We all would like an "instant fix", but RP is it's own master, and the best we can do is roll with the punches. Once you find the correct course of treatment, your symptoms will subside with time, even when you find the right treatment, it doesn't work overnight! Wish it did. I'd like to find one that worked as well for me without the side effects. But I can and will tolerate them if it keeps me free of flares! Hang in there, I know how difficult it is, we have all been in your shoes! And, frankly we would all rather not be there, but what can you do? We are and tha't it! Just say your prayers, use the group for all we are worth (which, actually is quite a bit!). We are all here for you and you are in our prayers! Take care, Love, Judy O Hard to Feel Good 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. I have come to realize that anyone who takes the wellness of life for granted is being cheated of knowing it's fullness through having friends and loved ones to support and be supported by in times that have less than that feeling of wellness. Maybe it is fitting that through this Easter week we focus on what we've been given, each in our own way, through our religion or another positive force, that gives us the strength and hope for a fulfilling future. This will be my prayer throughout each of the coming days and weeks. I wish that there was a certain time in the week that we could choose, that for just a few minutes, or even one, that we could designate as our group time to stop what we are doing, and all be thinking of each other and our needs en force, at the same time. To know we are all thinking of each other at that exact time each week might give us more fortification for endurance. This group is so close that if we could touch each other that way, it could feel like we're all holding hands for one minute each week and infusing our strength into the whole group. If you think that is something we could try to do, or maybe it has been tried before, let me know. I personally had a difficult visit with my rheumy yesterday. It wasn't dramatic or terrible, and I still think he is knowledgeable and has my best interests at heart. I was just struck by the timing of the process, from the disease's first symptoms, which in my case was almost 5 years ago, to diagnosis, which was 2 1/2 months ago for me, to yesterday, when I felt like I was being helped, but feeling frustrated that the disease control wasn't better and I wasn't able to move forward with my life as quickly as I would like. I am being taught another lesson in patience, which I have several times over these past 5 years, and I wish this time I could feel more positive about it all. For a quick explanation, I had to be put back up to 45 mgs of pred 2 weeks ago for possible disease related symptoms. Thinking that could be reduced now because the symptoms are starting to lessen, I was told no by my Dr. Furthermore, he wants me to increase the Dapsone to 150 from 100, and stay at these levels for 3 weeks till I see him again. Now three weeks isn't a long time in the grand scheme of things, and I understand his reasoning, but right now it feels like forever. I guess I have been focusing on this timing issue since seeing him, and wondered how the timing of it worked out for any of you. I know each person's circumstances dictated much of this, especially if there was airway or other serious involvement, but I'm still curious to know. Was your Dr more aggressive, and did you feel justified by how that was handled? Should I feel like I should be trying different meds by now, I don't know if it's too soon or not? I just don't know, and I hate that feeling. I am feeling inspired, in part by Susiecue and Sharon, who are ready to head to Mayo and figure it out head on. I was even thinking about finding out if we could get a group rate and all go together - wouldn't that blow them away! I am just very confused by the best road to take, as we all are time and again. I don't even think Mayo would be good for me right now in the timing of the rest of my life, but I'm not even sure how to look at that. We each have our own circumstances, and our own ways of dealing with things, but we are all bound together by a common goal - to live our lives as best we can for ourselves and those we care about. I hope we can all come to better peace of mind this week and find answers to our questions and information, if not solutions for our problems. I am praying for each of you for those things, and I know somehow we'll all find the strength to get us through. I hope you all have a calm and comfortable day, it's cold and raining here, I'm sure part of the reason it's hard to feel good. Let's look toward warmth, sunshine and happiness in the days ahead. With Love, Carol GDISCLAIMER!!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]

Oh Carmela , It is always so good to hear from you. How is everything in

Montreal?? I sure do miss your posts. I hope you and your sister and mom are

doing well. Give them both a BIG hug for me.

hugs

[Guest guest]

Hi ,

Welcome!!

Happy to hear your combination of meds is working for you.

I too tried Dapsone but ended up with Dapsone Syndrome 2 weeks after I started it.

Looking forward to getting to know you.

BTW, love your name. I have a daughter and a daughter . LOL

Sandy

----- Original Message ----- , Hi, I am a new member. Yes, the two times a day to pray for each other is a great idea, I am all for it. I live in Miami, Eastern Standard Time, in case that helps. I teach from 8:00 to 12:30, so it'd be hard to pray during those hours. I saw you mentioned dapsone. Dapsone never worked for me, I took it for three years for nothing and finally I became allergic to it. Methrotexate didn't either. The combination of Prednisone, Arava and Colchicine has done wonders, in case this helps anybody. I've gone from being incapacitated to being able to function. The only times I get flare-ups is after I have an infection. 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]

, It is so good to see you post. Hope to hear more about you.

hugs

[Guest guest]

Hi Carol and everyone

Amen 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)))

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