Welcome Jill

[Guest guest]

Hello and welcome to you Jilly, thanks too for introducing yourself to

us. I am the one who started coming up on 7 years ago, and we are

still going, as strong and as positive as ever!

Hope you find helpful. I love the name Jilly. One of the women I

worked with at a first museum job was named Gillian, and we called her

Gilly/Jilly. When I was young, I thought I might name a child that

name, but later chose not to have children. I still think of Gillian

and the impact she had on me - she was so bright and articulate and

compassionate (I think she works at the Tate now)

~ Gretchen

[Guest guest]

Hello Jill,

Welcome to the group. Enjoy your stay people here are so friendly. This is where

you BELONG!

[Guest guest]

Welcome Jill!

Hope your experiences here are helpful like they have been for me!

Elaina

[Guest guest]

I understand what you are saying. Guess my attitude is a little

different. I tried to explain my self in my member story in the

files section. *scratching my head*...guess I didn't do so good!

;o}

> > > We have all made it through

> > > one horror, only to face another.

> >

>

[Guest guest]

, I tried to look for your story and it is gone.

-Joanie

>

> I understand what you are saying. Guess my attitude is a little

> different. I tried to explain my self in my member story in the

> files section. *scratching my head*...guess I didn't do so good!

> ;o}

>

>

>

> > > > We have all made it through

> > > > one horror, only to face another.

> > >

> >

>

[Guest guest]

Dear Joanie and ,

Our perception of this whole second time around with Scoliosis surgery can be biased by our first go around. I have read for years others experiences, no wonder we are a strong group of people, going through years of bracing, then surgery with less than adequate pain control, then casting and for some frames. I will always remember that last hour waiting till it was time to get my next shot of pain med's in my thigh, thirty some years later I still remember that. My surgery then was awful and painful, but I do have some good memories. I was on the pediatic wing at Moffit Hospital, you had surgery at UCSF and then stayed at Moffit ,there for nearly a month, I met a lot of amazing kids and their parents. Since it was a four bed room, and I was nearly fifteen, the parents talked to me a lot, since my foster parents got there only occasionally. The girl I remember best was from Guatemala, sent up for bracing for a leg very much shorter than the other. She and I didn't speak the same language, but since she was pre-sugery and I was post-surgery about 3 weeks we were pals, went for icecream often, watched T.V. together. We were close in age, She was twelve, and kids just make do. She and I both cried when I went home.

Joanie, revision isn't a walk in the park, but please know that pain control is tons better. For me I had my family around me, something I didn't the first time, a super caring doc, my first doc I had only met once before surgery, and once after. The whole experience of revision was night and day different for me than what went on in the 70's. I had my Harrington Rod surgery in 1973, and a few years later my Grandfather had bypass surgery at the same hospital, so I went with my parents to go visit him. I got to the door of the hospital and couldn't go in, all the pain and being scared flooded back over me, like it was yesterday. I had to go sit in the car and never went in I was so sick to my stomach. The hospital I had revision at, both of them, since I had two, I have been back to often, to visit with patients I help of Dr. Kumar's, and Carla from our group who came out from West Virginia for surgery with Kumar. I have had no reaction to the buildings, and I think it is because while surgery was tough it wasn't anything like the post traumatic response I had to Moffit/UCSF. Please know you girls having surgery out there now, this was my experience thirty years ago, and now and then this is and was a top of the line surgical center, just in the seventies they did the best they could, and pain control was awful.

I looked at revision as something I had to get through, and I wanted it done yesterday to get my life back. So I went through the steps one at a time, and made it through. I'm glad everyday I did it, and that I was able to get through all the " stuff" in my head from the Harrington Rod surgery. I'm three year out from it and doing well, very thankful for a supportive family and two great doc's in Kumar and O'Brien who got me to this good place. I've been fused, wedges removed, screwed, and bolted, and though it sounds bad, I'm glad I did it.

Colorado Springs

[ ] Re: Welcome Jill

I just don't know any other words for the pain of our surgery. That is what I meant. Certainly I did not mean we are horrors, deformed in any obscene way. We are what we are. But at least for me, to have to think of going through the pain of spinal surgery again is a horrible thought and I do not look forward to the day when I will have to go through this again. I know I did not enjoy it the first time and I am sure that I will not enjoy it the second time. Being broken, hacked at screwed together and fused is not an experience I had ever looked forward to in my future. I think it's wonderful that you had a better experience than I did. I hope that someday I will look at this the way you do.Joanie> > We have all made it through > > one horror, only to face another.>

[Guest guest]

<<<Being broken, hacked at screwed together and fused >>>

Yesterday, my sister who has a perfectly normal 55 year old back, told me that she "too" has back problems. Talk about not understanding. The next time we speak, I am going to tell her that she can compare her back to mine after she has been "broken, hacked at, screwed together and fused". I love the way you put this! You gave us a perfect response to all unfeeling, uncaring people. Thank you!!

Bonnie

[ ] Re: Welcome Jill

I just don't know any other words for the pain of our surgery. That is what I meant. Certainly I did not mean we are horrors, deformed in any obscene way. We are what we are. But at least for me, to have to think of going through the pain of spinal surgery again is a horrible thought and I do not look forward to the day when I will have to go through this again. I know I did not enjoy it the first time and I am sure that I will not enjoy it the second time. Being broken, hacked at screwed together and fused is not an experience I had ever looked forward to in my future. I think it's wonderful that you had a better experience than I did. I hope that someday I will look at this the way you do.Joanie> > We have all made it through > > one horror, only to face another.>

[Guest guest]

Jill and group;

Hi Jill,,, welcome to our humble group... I am so sorry for your

pain.. I always wondered how they measured pain.. I know there is a 1

to 10 measurment the doctors use. I was in agony and to look at me

you would think there was nothing wrong with me.. I told the doctor

I was a 5 cause I thought that was really bad pain.. About 7 months

later I told her It was a eleven lol...

You are very fortunate to have a doctor letting you to decide to be

agressive or not agressive with your treatment.. I can't answer

whether you should be agressive or not cause I only been taking meds

for a year now..

I was in so much pain I would have taken arsenic if the doctor said

it would help.. But looking at my body language one couldn't tell I

was in any pain at all.... I hope you can take your time to decide

what you will do... You will get a lot of information while your in

the group.

I love prednisone,,, as we all know we can't take it long in high

dose's... I hope you figure out what is best for you to do with your

treatment.. You will get a lot of support here and we can vent

also.. God bless and take care..

gentle hugs

Clora

*******************************************************************

> Hello there!

>

> My name is Jill. I am 37 years old and... up until now, was in great

> health. I was just diagnosed with RA about a month ago, although I

> believe I had some subtle symptoms going back about 2 years or so.

But

> the catalyst that sent me to a rhummy was the typical pain in the

> hands and feet. After it started to affect my hands and feet, it

> seemed to spread pretty quickly (ankles, wrists, shoulder). I had

some

> blood work done and I have a rheumatoid factor (I think it was at

63).

> The initial blood work did not show anything in the sed rate or the

> other thing (some sort of antigen or soomething). I had another work

> up done at the rhummy's and will find out about them tomorrow... so

> maybe that's changed.

>

> My rhummy put me on etodolac for the pain. Nothing else yet. It did

> help initially, but after about a week, the pain had returned. I

> called the doctor to ask him for something else because not only was

> it not working, but the pain was getting worse and spreading.

> Specifically to my neck, which is awful. Sleep was becoming an

> issue... etc... So he put me on prednisone. It was just that 6 day

> packet. After the first 24 hours on it, I was like... %98 better. I

> cried because I forgot how it felt to be normal (I've been suffering

> pretty bad since the end of July). Today, it has been a week since I

> finished up the pred pack... and slowly but surely the pain is

> returning. I go back for a recheck tomorrow. I guess I am wondering

> what I should and shouldn't do... as I am completely new to all of

> this. I have hesitation to get involved with the heavy duty drugs.

> Afterall, I am not even remotely crippled with pain. It's just

> moderate, annoying pain. I fear the crippling pain though.. and WILL

> take drugs if it will increase my chances of never having that kind

of

> pain.

>

> So I am sorta throwing out the question for those of you who are

well

> versed in this subject and have been dealing with this disease for

> awhile.... If you could go back to when you were first diagnosed, is

> there something you wish you did or did NOT do? Do you wish you

tried

> this or that drug initially. I realize everyone is different and

that

> what worked for you might not have worked for another. But... I'd

like

> to hear them all, as a reference. I am kinda confused about how to

> proceed. I have only seen my rhummy once. He talked about different

> treatments... aggressive to non-aggressive. He made me feel like I

was

> the in charge of how to proceed. We could take it any direction I

saw

> fit... I could be wrong about that. Like I said, I go for my second

> appointment tomorrow, so maybe he has a plan based on HIS blood work

> results (i went to my reg. doctor first, way back in the summer...

and

> then it took 6 weeks to finally see this rhummy and now is the

recheck

> since then). I don't know....

>

> Also, I'd like to throw this out there.... Ever since I stopped

taking

> my birth control pills (2 years ago), weird things have happened to

> me. I keep getting ovarian cysts... my periods are insanely heavy

and

> painful... and now that I think about it, it is also when all of

this

> subtle pain started. Anyone think it could be related. I asked my

> rhummy and he poo-pooed it.... but you never know?

>

> Alright, I've rambled enough... I am off to work... which by the

way,

> you guys will appreciate this, I am a house cleaner. Imagine

cleaning

> other people's homes with RA pain? Not fun. The only respite I have

is

> that I am back in school for graphic design and I am almost done. So

> hopefully before this gets out of control, I'll be working a much

less

> physical job. Fingers crossed anyway...

>

> Thanks for any advice!

> Jill

>

[Guest guest]

Hi Jill and group;

I am a silent observer in the group but felt I must respond to Jill. I am 38 and

have had very aggressive RA since I was 18. My advice to you is this: Be your

own advocate in your treatment. I wish i had tried more aggressive treatments in

the beginning because I feel I would've had to deal with less deformity and

disease progressiveness in the long run. Keep in mind, no one knows your body as

well as you do and if you feel you need more meds, ask. The right medicine or

medicine combos can make a huge difference in how you feel, your quality of

life, etc. Also, I cannot stress this enough, especially in your line of work,

but adequate rest is something you must make time for. It makes a difference in

how your pain is managed. As far as the changes in your monthly cycle, it is

common for that stuff to happen as we get older. I don't personally feel there

is any connection. It is also common when you are first diagnosed to look

everywhere for some other

'reason' you are in pain, etc. Babe the reason is RA. Don't let it get the best

of you and don't let it control you. If you let it become the main focus of your

life, it will be. Mind over matter babes..........email me back if you need

anything........Jen

From: CLORA <clora4jesus@...>

Subject: [ ] Re: Welcome Jill

Date: Thursday, October 23, 2008, 7:14 PM

Jill and group;

Hi Jill,,, welcome to our humble group... I am so sorry for your

pain.. I always wondered how they measured pain.. I know there is a 1

to 10 measurment the doctors use. I was in agony and to look at me

you would think there was nothing wrong with me.. I told the doctor

I was a 5 cause I thought that was really bad pain.. About 7 months

later I told her It was a eleven lol...

You are very fortunate to have a doctor letting you to decide to be

agressive or not agressive with your treatment.. I can't answer

whether you should be agressive or not cause I only been taking meds

for a year now..

I was in so much pain I would have taken arsenic if the doctor said

it would help.. But looking at my body language one couldn't tell I

was in any pain at all.... I hope you can take your time to decide

what you will do... You will get a lot of information while your in

the group.

I love prednisone,, , as we all know we can't take it long in high

dose's... I hope you figure out what is best for you to do with your

treatment.. You will get a lot of support here and we can vent

also.. God bless and take care..

gentle hugs

Clora

************ ********* ********* ********* ********* ********* ********* *

> Hello there!

>

> My name is Jill. I am 37 years old and... up until now, was in great

> health. I was just diagnosed with RA about a month ago, although I

> believe I had some subtle symptoms going back about 2 years or so.

But

> the catalyst that sent me to a rhummy was the typical pain in the

> hands and feet. After it started to affect my hands and feet, it

> seemed to spread pretty quickly (ankles, wrists, shoulder). I had

some

> blood work done and I have a rheumatoid factor (I think it was at

63).

> The initial blood work did not show anything in the sed rate or the

> other thing (some sort of antigen or soomething). I had another work

> up done at the rhummy's and will find out about them tomorrow... so

> maybe that's changed.

>

> My rhummy put me on etodolac for the pain. Nothing else yet. It did

> help initially, but after about a week, the pain had returned. I

> called the doctor to ask him for something else because not only was

> it not working, but the pain was getting worse and spreading.

> Specifically to my neck, which is awful. Sleep was becoming an

> issue... etc... So he put me on prednisone. It was just that 6 day

> packet. After the first 24 hours on it, I was like... %98 better. I

> cried because I forgot how it felt to be normal (I've been suffering

> pretty bad since the end of July). Today, it has been a week since I

> finished up the pred pack... and slowly but surely the pain is

> returning. I go back for a recheck tomorrow. I guess I am wondering

> what I should and shouldn't do... as I am completely new to all of

> this. I have hesitation to get involved with the heavy duty drugs.

> Afterall, I am not even remotely crippled with pain. It's just

> moderate, annoying pain. I fear the crippling pain though.. and WILL

> take drugs if it will increase my chances of never having that kind

of

> pain.

>

> So I am sorta throwing out the question for those of you who are

well

> versed in this subject and have been dealing with this disease for

> awhile.... If you could go back to when you were first diagnosed, is

> there something you wish you did or did NOT do? Do you wish you

tried

> this or that drug initially. I realize everyone is different and

that

> what worked for you might not have worked for another. But... I'd

like

> to hear them all, as a reference. I am kinda confused about how to

> proceed. I have only seen my rhummy once. He talked about different

> treatments.. . aggressive to non-aggressive. He made me feel like I

was

> the in charge of how to proceed. We could take it any direction I

saw

> fit... I could be wrong about that. Like I said, I go for my second

> appointment tomorrow, so maybe he has a plan based on HIS blood work

> results (i went to my reg. doctor first, way back in the summer...

and

> then it took 6 weeks to finally see this rhummy and now is the

recheck

> since then). I don't know....

>

> Also, I'd like to throw this out there.... Ever since I stopped

taking

> my birth control pills (2 years ago), weird things have happened to

> me. I keep getting ovarian cysts... my periods are insanely heavy

and

> painful... and now that I think about it, it is also when all of

this

> subtle pain started. Anyone think it could be related. I asked my

> rhummy and he poo-pooed it.... but you never know?

>

> Alright, I've rambled enough... I am off to work... which by the

way,

> you guys will appreciate this, I am a house cleaner. Imagine

cleaning

> other people's homes with RA pain? Not fun. The only respite I have

is

> that I am back in school for graphic design and I am almost done. So

> hopefully before this gets out of control, I'll be working a much

less

> physical job. Fingers crossed anyway...

>

> Thanks for any advice!

> Jill

>

[Guest guest]

Jen,  Very good advise.  No one knows our bodies as well as we do and we MUST be

our own advocates.  Find a doctor who will work with you and will LISTEN to

you.  I too am a RN but have not worked in several years.  RA hit several years

after I had left nursing.  But I do believe there is some connection between RA

& hormones but have not been able to find much research  along those lines.  I

do know that many go into remission when pregnant,  many have RA start at about

the time menopause sets in (my case).  I had been having some heavy bleeding

problems in late 40's and went on hormones for about 3 months as an alternative

to surg.  When I stopped the hormones I never had another period and within 3

months RA had hit hard. A trigger or a coincidence in timing-who knows.

But we must hang in there and a positive attitude is essential. I stay active

even when I don't feel like it. I am not going to go down without a fight. I

take medications that I hate to take but they help keep me going. I try to eat

healthy and spend a lot of time in hot baths or the hot tub. I sleep under an

electric blanket-anything to help keep the joints warm and more flexible.

I am fortunate that I do not have to work full time but nursing is a very hard

profession esp. in the hospital setting, but there are many opportunities out

there for nurses that are not as physically and mentally taxing as hsopital

work. Jill hang in there and finds what works for you.

From: CLORA <clora4jesus>

Subject: [ ] Re: Welcome Jill

@gro ups.com

Date: Thursday, October 23, 2008, 7:14 PM

Jill and group;

Hi Jill,,, welcome to our humble group... I am so sorry for your

pain.. I always wondered how they measured pain.. I know there is a 1

to 10 measurment the doctors use. I was in agony and to look at me

you would think there was nothing wrong with me.. I told the doctor

I was a 5 cause I thought that was really bad pain.. About 7 months

later I told her It was a eleven lol...

You are very fortunate to have a doctor letting you to decide to be

agressive or not agressive with your treatment.. I can't answer

whether you should be agressive or not cause I only been taking meds

for a year now..

I was in so much pain I would have taken arsenic if the doctor said

it would help.. But looking at my body language one couldn't tell I

was in any pain at all.... I hope you can take your time to decide

what you will do... You will get a lot of information while your in

the group.

I love prednisone,, , as we all know we can't take it long in high

dose's... I hope you figure out what is best for you to do with your

treatment.. You will get a lot of support here and we can vent

also.. God bless and take care..

gentle hugs

Clora

************ ********* ********* ********* ********* ********* ********* *

> Hello there!

>

> My name is Jill. I am 37 years old and... up until now, was in great

> health. I was just diagnosed with RA about a month ago, although I

> believe I had some subtle symptoms going back about 2 years or so.

But

> the catalyst that sent me to a rhummy was the typical pain in the

> hands and feet. After it started to affect my hands and feet, it

> seemed to spread pretty quickly (ankles, wrists, shoulder). I had

some

> blood work done and I have a rheumatoid factor (I think it was at

63).

> The initial blood work did not show anything in the sed rate or the

> other thing (some sort of antigen or soomething). I had another work

> up done at the rhummy's and will find out about them tomorrow... so

> maybe that's changed.

>

> My rhummy put me on etodolac for the pain. Nothing else yet. It did

> help initially, but after about a week, the pain had returned. I

> called the doctor to ask him for something else because not only was

> it not working, but the pain was getting worse and spreading.

> Specifically to my neck, which is awful. Sleep was becoming an

> issue... etc... So he put me on prednisone. It was just that 6 day

> packet. After the first 24 hours on it, I was like... %98 better. I

> cried because I forgot how it felt to be normal (I've been suffering

> pretty bad since the end of July). Today, it has been a week since I

> finished up the pred pack... and slowly but surely the pain is

> returning. I go back for a recheck tomorrow. I guess I am wondering

> what I should and shouldn't do... as I am completely new to all of

> this. I have hesitation to get involved with the heavy duty drugs.

> Afterall, I am not even remotely crippled with pain. It's just

> moderate, annoying pain. I fear the crippling pain though.. and WILL

> take drugs if it will increase my chances of never having that kind

of

> pain.

>

> So I am sorta throwing out the question for those of you who are

well

> versed in this subject and have been dealing with this disease for

> awhile.... If you could go back to when you were first diagnosed, is

> there something you wish you did or did NOT do? Do you wish you

tried

> this or that drug initially. I realize everyone is different and

that

> what worked for you might not have worked for another. But... I'd

like

> to hear them all, as a reference. I am kinda confused about how to

> proceed. I have only seen my rhummy once. He talked about different

> treatments.. . aggressive to non-aggressive. He made me feel like I

was

> the in charge of how to proceed. We could take it any direction I

saw

> fit... I could be wrong about that. Like I said, I go for my second

> appointment tomorrow, so maybe he has a plan based on HIS blood work

> results (i went to my reg. doctor first, way back in the summer...

and

> then it took 6 weeks to finally see this rhummy and now is the

recheck

> since then). I don't know....

>

> Also, I'd like to throw this out there.... Ever since I stopped

taking

> my birth control pills (2 years ago), weird things have happened to

> me. I keep getting ovarian cysts... my periods are insanely heavy

and

> painful... and now that I think about it, it is also when all of

this

> subtle pain started. Anyone think it could be related. I asked my

> rhummy and he poo-pooed it.... but you never know?

>

> Alright, I've rambled enough... I am off to work... which by the

way,

> you guys will appreciate this, I am a house cleaner. Imagine

cleaning

> other people's homes with RA pain? Not fun. The only respite I have

is

> that I am back in school for graphic design and I am almost done. So

> hopefully before this gets out of control, I'll be working a much

less

> physical job. Fingers crossed anyway...

>

> Thanks for any advice!

> Jill

>