Re: What Happened to this Group?

[Guest guest]

,

I didn't joint that long ago and I only posted a couple of questions. Since then I've been following the group, but haven't been posting. I just can't bring myself to keep posting about feeling like crap all the time. I am early in the process, but have had many years of dealing with doctors and many years of being disappointed by doctors. I don't think that this experience is going to be any different. I'm sorry that you are dealing with doctors who can't see what's right in front of them. For some doctors, if it isn't obvious then it isn't real. I hope you can find someone who will listen to you and treat you appropriately.

Kim

----- Original Message -----

From: Deborah Bargad

Rheumatoid Arthritis

Sent: Monday, June 16, 2008 7:00 PM

Subject: Re: What Happened to this Group?

Dear - The moderator moved the entire group to another forum. I like the forum better so I am still here. Yours, Deborah

On Mon, Jun 16, 2008 at 1:48 PM, <catdelouisecomcast (DOT) net> wrote:

I see we have close to 1000 members, where are they? This group used to be such a busy, supportive and knowledgeable bunch of people. The people here are still like that but where are the rest of them?

[Guest guest]

I notice the same thing. I think we hear from people more when they are in pain and need help. Maybe it's a good sign when we dont here from them.

I have been reading all of your emails and I am just floored and amazed. I remember when you told us you were pregnant and I told you my horror story of having my daughter. I was so hoping that it wouldnt happen to you. I am so sorry it did. I was only taking gold injections and prednisone with pain meds before pregnancy and after I went back to my Rheumitologist is when I was put on Remicade. It has been amazing until the past year, now I am not feeling so great anymore. The doc doesnt seem to think I should be feeling this way because my blood work comes back okay. I dont know what is going on with these doctors but Its driving me crazy!!!! I am debating on looking for another Rheumatologist but I really dont want to. I've been seeing him for 12 years.

Please please keep us informed with your progress, even if I dont respond I am still reading about you.

I wish you all the best luck

Take Care

in Michigan

From: <catdelouise@...>Subject: What Happened to this Group?Rheumatoid Arthritis Date: Monday, June 16, 2008, 12:48 PM

I see we have close to 1000 members, where are they? This group used to be such a busy, supportive and knowledgeable bunch of people. The people here are still like that but where are the rest of them?

[Guest guest]

Hi I am a new member. I have been getting the emails and just holding back while I read them till I felt I was ready to respond, so I guess I am ready now....Geri.

From: <catdelouise@...>Subject: What Happened to this Group?Rheumatoid Arthritis Date: Monday, June 16, 2008, 4:48 PMI see we have close to 1000 members, where are they? This group used to be such a busy, supportive and knowledgeable bunch of

people. The people here are still like that but where are the rest of them?

------------------------------------

[Guest guest]

Dear - The moderator moved the entire group to another forum. I like the forum better so I am still here. Yours, Deborah

On Mon, Jun 16, 2008 at 1:48 PM, <catdelouise@...> wrote:

I see we have close to 1000 members, where are they? This group used to be such a busy, supportive and knowledgeable bunch of people. The people here are still like that but where are the rest of them?

[Guest guest]

I'm new to this group, but have had RA for two years now and I wanted to find out if anyone has had hand joint surgery and if so if they could share some info about it thanks Geri

I see we have close to 1000 members, where are they? This group used to be such a busy, supportive and knowledgeable bunch of people. The people here are still like that but where are the rest of them?

[Guest guest]

Thanks Kim,

Well it looks like we have a lot of lurkers who are here! It's nice to know a

post won't go

unanswered.

I am sorry, Kim, that you feel so disillusioned. And I know what you mean about

always

feeling like crap. I am not kidding, since having RA since 2003, I have felt

" well " , " good " or

" energetic " ONCE. One day, where DH and I decided to spend a wonderful day in a

sculpture garden. We never told anyone b/c we had been invited to 2 events that

day and

had declined. Suddenly feeling well we wanted to do something we both loved to

do!

When I am feeling decent I just call it my normal level of crap!

Nice to meet you!

I will post about something soon that happened to me that I would like all of

your

thoughts on. Right now I am eating lunch and then it is time for my near 3 hour

rest/sleep before DH brings the baby home from daycare! Thank God, one of my

best

friends is cooking for us tonight!

>

> I see we have close to 1000 members, where are they?

>

> This group used to be such a busy, supportive and knowledgeable bunch of

people.

The

> people here are still like that but where are the rest of them?

>

>

>

[Guest guest]

,

I believe many members are like myself. I have only been diagnosed

for a little over a year. My treatment and personal knowledge is

limited to only what I have experienced. The only RA drugs that I

have been given is MTX, which isn't working for me. My rheummy will

probably change my treatment when I see her 7/3. I have responded to

questions and fears on that subject.

I would love to be more supportive to this group. Every question

that I have posted has been answered with warm compassionate

response.

I just wanted you to know that there are probably more like me. I am

here and I do read the questions and post. I truly wish that I could

help more but I am really reluctant to reply when I have no personal

experience.

Some of these members are so blessed to have spouses that do

understand. Myself I am blessed with my daughter (she has

fibromialga) that is my support team and keeps me haning in to face

another day. The rest of my family thinks that I am still the same

strong independent person that I used to be. They are blind to the

visual damage. I don't know if it is because they love me or they

don't care enough.

Every member of our group is in my prayers, only people facing years

of treatment trials, pain, and distress can understand what we are

going through.

I wish eveyone has a good day today.

Shirley

>

> I see we have close to 1000 members, where are they?

>

> This group used to be such a busy, supportive and knowledgeable

bunch of people. The

> people here are still like that but where are the rest of them?

>

>

>

[Guest guest]

Hi Gang, I have had severe R/A for 30years, its doing ok now. Some small joint deformitie, but over all I am good in shape. I use Enbrel once a week. Love that medicine. I have been on everything thru the years. The key is not giving into the pain and stay active.

I stay active on a bicycle and light jogging.

Cheers,

From: nana2livi <s.p5315@...>Subject: Re: What Happened to this Group?Rheumatoid Arthritis Date: Thursday, June 19, 2008, 4:30 AM

,I believe many members are like myself. I have only been diagnosed for a little over a year. My treatment and personal knowledge is limited to only what I have experienced. The only RA drugs that I have been given is MTX, which isn't working for me. My rheummy will probably change my treatment when I see her 7/3. I have responded to questions and fears on that subject. I would love to be more supportive to this group. Every question that I have posted has been answered with warm compassionate response.I just wanted you to know that there are probably more like me. I am here and I do read the questions and post. I truly wish that I could help more but I am really reluctant to reply when I have no personal experience.Some of these members are so blessed to have spouses that do understand. Myself I am blessed with my daughter (she has fibromialga) that is my support team and keeps

me haning in to face another day. The rest of my family thinks that I am still the same strong independent person that I used to be. They are blind to the visual damage. I don't know if it is because they love me or they don't care enough.Every member of our group is in my prayers, only people facing years of treatment trials, pain, and distress can understand what we are going through. I wish eveyone has a good day today.Shirley >> I see we have close to 1000 members, where are they? > > This group used to be such a busy, supportive and knowledgeable bunch of people. The > people here are still like that but where are the rest of them?> >

>

[Guest guest]

Dear

I DONT KNOW IF YOU WILL GET THIS MESSAGE, AS I AM NEW AT THIS GROUP.

I AM HAVING A FLAREUP ON MY RA, ARTHRITIS,i AM SO SICK OF ALL THOSE

DR, BECAUSE THE DONT TAKE TIME TO LISTEN, JUST ANOTHER PILL, AND OUT

YOU ARE AT THE DOOR.MY BIGGEST PROBLEM IS MY DEPRESSION, BECAUSE I AM

ALL ALONE, JUST ME AND MY LITTLE DOG,, PEOPLE TELLING ME I HAVE TO GO

OUT AND DO STUFF, WHEN YOU ARE IN SO MUCH PAIN, WHAT DO YOU FEEL LIKE

DOING MUCH ,BUT THE JUST DONT WANT TO UNDERSTAND, AND THAT HURTS SO

MUCH. I LIVE IN A SMALL HICK TOWN WHERE THERE IS ABSOLUTELY NOTING TO

DO, EXEPT GO TO THE GROCERY STORE, BANK , AND POST OFFICE THERE ARE

DAYS I CAN NOT GET OUT OF BED, I WISH I COULD FIND A GOOD DR, i AM

PRAYING EVERY DAY TO GOD TO PLEASE HELP ME AT LEAST A LITTLE, BUT I

GUESS HE DONT CARE ALSO.

>

> ,

> I believe many members are like myself. I have only been diagnosed

> for a little over a year. My treatment and personal knowledge is

> limited to only what I have experienced. The only RA drugs that I

> have been given is MTX, which isn't working for me. My rheummy will

> probably change my treatment when I see her 7/3. I have responded

to

> questions and fears on that subject.

> I would love to be more supportive to this group. Every question

> that I have posted has been answered with warm compassionate

> response.

> I just wanted you to know that there are probably more like me. I

am

> here and I do read the questions and post. I truly wish that I

could

> help more but I am really reluctant to reply when I have no

personal

> experience.

> Some of these members are so blessed to have spouses that do

> understand. Myself I am blessed with my daughter (she has

> fibromialga) that is my support team and keeps me haning in to face

> another day. The rest of my family thinks that I am still the same

> strong independent person that I used to be. They are blind to the

> visual damage. I don't know if it is because they love me or they

> don't care enough.

> Every member of our group is in my prayers, only people facing

years

> of treatment trials, pain, and distress can understand what we are

> going through.

> I wish eveyone has a good day today.

> Shirley

>

> >

> > I see we have close to 1000 members, where are they?

> >

> > This group used to be such a busy, supportive and knowledgeable

> bunch of people. The

> > people here are still like that but where are the rest of them?

> >

> >

> >

>

[Guest guest]

<angelac71@...> wrote:

***I notice the same thing. I think we hear from people more when they

are in pain and need help. Maybe it's a good sign when we dont here

from them.***

Yes, I do read and post more when I need help. Also, I stopped checking

the post every day like I used to because there were so few posting

which ended-up with me never checking to see if anyone posted. I wonder

if other people have stopped reading posts due to the lack of them.

Jean

[Guest guest]

I never check the web site but on the web

site there is a link just before the posts that says “edit membership”.

If you click on that one option is to get each post sent to you by e-mail and I

use that option. All I check is my e-mail inbox and I respond from there

also. I have no trouble deleting messages I am not interested in and I also

have no problem responding to the ones I want to address. This might work for

others who don’t want to miss posts but don’t want to check in

every day. God bless.

From:

Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]

On Behalf Of hookedonpopcorn

Sent: Monday, June 23, 2008 4:04

PM

To:

Rheumatoid Arthritis

Subject: Re:

What Happened to this Group?

<angelac71@...> wrote:

***I notice the same thing. I think we hear from people more when they

are in pain and need help. Maybe it's a good sign when we dont here

from them.***

Yes, I do read and post more when I need help. Also, I stopped checking

the post every day like I used to because there were so few posting

which ended-up with me never checking to see if anyone posted. I wonder

if other people have stopped reading posts due to the lack of them.

Jean

[Guest guest]

my sentiments!I have been here since early 2000's and possibly earlier, but what

can I say? I just recently had a triple by-pass and hoped that would give me

more stamina, and it has, but since I was taking predisone, naproxine and

plaquenile for the RA, I can't take the Pred as Cardiologist took me off of it.

Back several years ago when my Rhuemie suggested Humarin, I vetoed it as my

immune system was keeping me in good shape except for the RA and it is a good

thing I wasn't taking it as I don't know if could have had the by-passes had I

been taking it.

Now I don't know for sure where to go other than do what I've been

doing.....just suck it up and go on about my business. It does get harder and

harder off and on, though. I seem to be doing better than a lot of the folks as

can still do most of my chores. I still grunt and groan, but got tired of

telling it ! LOL!!!

The reason I don't do much replying is that I don't seem to have any answers. I

wish to God I did, but the only help I get is know and believing that He won't

give me any more than I can deal with.

soft hugs to you all, and I always think :IT COULD BE WORSE! and be thankful it

isn't.

Lee

--

searching ancestors of Standifer, Meredith, Halley, Hale, Potts --

Leona, Lee, Jackie, Tvksi, Granny and Momma. We wish you all the best,

---- Kim on <hockim2@...> wrote:

> ,

>

> I didn't joint that long ago and I only posted a couple of questions. Since

then I've been following the group, but haven't been posting. I just can't

bring myself to keep posting about feeling like crap all the time. I am early

in the process, but have had many years of dealing with doctors and many years

of being disappointed by doctors. I don't think that this experience is going

to be any different. I'm sorry that you are dealing with doctors who can't see

what's right in front of them. For some doctors, if it isn't obvious then it

isn't real. I hope you can find someone who will listen to you and treat you

appropriately.

>

> Kim

>

>

> ----- Original Message -----

> From: Deborah Bargad

> Rheumatoid Arthritis

> Sent: Monday, June 16, 2008 7:00 PM

> Subject: Re: What Happened to this Group?

>

>

> Dear - The moderator moved the entire group to another forum. I

like the forum better so I am still here. Yours, Deborah

>

>

>

> On Mon, Jun 16, 2008 at 1:48 PM, <catdelouise@...> wrote:

>

> I see we have close to 1000 members, where are they?

>

> This group used to be such a busy, supportive and knowledgeable bunch of

people. The

> people here are still like that but where are the rest of them?

>

>

>

>

>

>

>

>

>

[Guest guest]

I do the same thing. I get them emailed to me. Sometimes though when I read them I feel like I am missing something, so it makes me wonder if I actually really get all of the posts. I havent checked the site since I joined along time ago. ***I notice the same thing. I think we hear from people more when they are in pain and need help. Maybe it's a good sign when we dont here from them.***Yes, I do read and post more when I need help. Also, I stopped checking the post every day like I used to because there were so few posting which ended-up with me never checking to see if anyone posted. I wonder if other people have stopped reading posts due to the lack of them.Jean

[Guest guest]

dear Marika, Oh how I know where you are coming from. If this is any help to you, I can tell you that I felt like you are feeling approx. 18 months ago. I was in total despair, in terrible pain, not able to even get dressed, get in/out of bed and I felt my life was coming to an end. I had been suffering from osteo arthritis for many years and also suffered a fracture to my upper and lower spine following an accident at work, and then suddenly this terrible new pain emerged and I felt that I had the flu 20 times over !! I was going to see my General Practitioner and she just kept saying that it was the usual arthritis I was suffering but I knw differently!! In the end my niece who is a nurse told me to go privately and see a Rheumatologist, and this I did. I had blood tests, X rays and a very full examination and within 2 days the results were back and lo and behold - very severe RA.

From that day on this wonderful Rheumatologist and his team have been helping me, I was put on drugs immediately (methotexate,steroids etc) and finally I feel I have turned the corner. I was told it would be a long slow process, but my pain levels are just about bearable now. I have had some very bad flare ups but I know that I must expect this. When I look back and think how bad I once was, I know I am feeling loads better, and thank God for this every moment of my life. Before diagnosis one Doctor had the nerve to tell me my pain was caused by stress !! I said - too right I am stressed - by this terrible pain and lack of mobility. If you can see the right specialist and with the right drugs you will be able to manage this terrible disease hopefully, I am sure that there are many other members of this wonderful group who will testify to that. Keep on going,

find the right medical help and battle on for your own sake, your owe yourself that. My thoughts and prayers are with you so much and I hope you can find the help you so desperately need loving thoughts - Lynda Marika <tobytoby99350@...> wrote: Dear I DONT KNOW IF YOU WILL GET THIS MESSAGE, AS I AM NEW AT THIS GROUP.I AM HAVING A FLAREUP ON MY RA, ARTHRITIS,i AM SO SICK OF ALL THOSE DR,

BECAUSE THE DONT TAKE TIME TO LISTEN, JUST ANOTHER PILL, AND OUT YOU ARE AT THE DOOR.MY BIGGEST PROBLEM IS MY DEPRESSION, BECAUSE I AM ALL ALONE, JUST ME AND MY LITTLE DOG,, PEOPLE TELLING ME I HAVE TO GO OUT AND DO STUFF, WHEN YOU ARE IN SO MUCH PAIN, WHAT DO YOU FEEL LIKE DOING MUCH ,BUT THE JUST DONT WANT TO UNDERSTAND, AND THAT HURTS SO MUCH. I LIVE IN A SMALL HICK TOWN WHERE THERE IS ABSOLUTELY NOTING TO DO, EXEPT GO TO THE GROCERY STORE, BANK , AND POST OFFICE THERE ARE DAYS I CAN NOT GET OUT OF BED, I WISH I COULD FIND A GOOD DR, i AM PRAYING EVERY DAY TO GOD TO PLEASE HELP ME AT LEAST A LITTLE, BUT I GUESS HE DONT CARE ALSO.>> ,> I believe many members are like myself. I have only been diagnosed > for a little over a year. My treatment and personal knowledge is > limited to only what I have experienced. The only RA drugs that I > have been given is MTX, which isn't working for

me. My rheummy will > probably change my treatment when I see her 7/3. I have responded to > questions and fears on that subject. > I would love to be more supportive to this group. Every question > that I have posted has been answered with warm compassionate > response.> I just wanted you to know that there are probably more like me. I am > here and I do read the questions and post. I truly wish that I could > help more but I am really reluctant to reply when I have no personal > experience.> Some of these members are so blessed to have spouses that do > understand. Myself I am blessed with my daughter (she has > fibromialga) that is my support team and keeps me haning in to face > another day. The rest of my family thinks that I am still the same > strong independent person that I used to be. They are blind to the > visual damage. I don't know if it is

because they love me or they > don't care enough.> Every member of our group is in my prayers, only people facing years > of treatment trials, pain, and distress can understand what we are > going through. > I wish eveyone has a good day today.> Shirley > > >> > I see we have close to 1000 members, where are they? > > > > This group used to be such a busy, supportive and knowledgeable > bunch of people. The > > people here are still like that but where are the rest of them?> > > > > >>

[Guest guest]

Hi ,

You must have just " passed " as a new member so I wrote to your second post

first! It

takes a while for your first post to come up.

That's weird b/c you answered many of my questions! Are you able to get

treatment for

your depression? It is very normal to have depression with RA but getting on

something

for depression may make you think clearer and better and may help you answer

some of

your problems.

Do you have friends to help, or a church? You have the internet, hon, and there

are many

services available for you. You don't have to be alone and I am glad you wrote

to this

group.

Talk to you again and keeping you in my thoughts.

> > >

> > > I see we have close to 1000 members, where are they?

> > >

> > > This group used to be such a busy, supportive and knowledgeable

> > bunch of people. The

> > > people here are still like that but where are the rest of them?

> > >

> > >

> > >

> >

>

[Guest guest]

Geri, I have done some research on the hand joint replacement, it seems work well, but it wil not withstand stuff like hammering,pounding. lifting over 25 -30 lbs the replacement joints seem to lagging behind the others (hip and knee) in strength and durability . My hands are all narrly looking, but still function. Squeezing a foam ball helps keep the strength in them.

God Bless

Mike

I see we have close to 1000 members, where are they? This group used to be such a busy, supportive and knowledgeable bunch of people. The people here are still like that but where are the rest of them?

[Guest guest]

I have had mcp replacement surgery on both hands. The right hand was in 1994, the left in 95 (or maybe 95 and 96).

I recently had a corrective surgery on the left index finger, they put in a new replacement to make it possible for me to play the violin (the tendons had subluxed).

on my right hand you can see some of the mcp's are broken as there are odd bumps, but both hands work well.

Hope that helps!