Re: Newbie

[Guest guest]

Dear Kate,

So nice to meet you! This group is filled with some fun, awesome people willing to listen and help. I should know, I'm kind of a recent new comer and already feel right at home. I started with onset symptoms in August of 2003 and was diagnosed in March 2004 so this disease is all new to me. I have been just taking it day by day. I am kind of in the mitst of ending a bad flare right now.

Are you currently under a RD'S care? or just you PCP? What was your docs thoughts on your sed rate being up? Are you feeling any Joint pain?

Carey

NJ

[Guest guest]

Hi Kate,

I'm real glad that you spoke up and let us know that you are here. Welcome aboard.

Sorry to hear that you are having problems. I can totally relate though because I am going through similar circumstances. Like you, my SD has also come out of a remission of sorts. We sound very similar. I have decreased a lot of my meds, but did get my life back enough, to go back to school. I'm hoping that this recent flare or, whatever, it is doesn't keep me from completing my education. I'll be furious with my SD if that happens. You were describing a lot of what I have been experiencing with this most recent episode. Like you, my labs were fairly normal, yet still with joint pain and swelling, tendonitis too, but little trouble with fever and the rash. Now like you, my SED rate has gone back up and ferritin levels are down again. Frustrating isn't it?

What I've figured out over the last 6 1/2 years having this wonderful stuff is that I own my SD. It's all mine, forever. I can't give it to anyone and I wouldn't want to share it with anyone either, except for you guys because we all have it anyway.We all understand here. LOL. So living with SD has become sort of an adventure with me. Here's what I figured out so far:

1.) At best I will have periods of remission with SD. It's almost like a cancer, it can put into remission, but it can always come back at any given time. SD can also go away again. (This is really my second "real" flare since my initial onset in 1998.) I'm looking forward to it leaving me and the sooner the better.

2.) I'm never going to be a 100% pre -SD. How could I be 100% again when I have gotten older. LOL. I was 39 when it started and now I'm 45 1/2. Age got to me there somewhere. Once I got this concept, my attitude really changed.

3.) When the good times present themself, I live life to the fullest, making everyday count. I do as much as I can pack into a 24 hour period because I am waiting for that other shoe to drop. We never know when the dragon will bear its head. So, this old girl, pushes it to the limits. LOL. It satisfies my need for living on the edge. I still get to live on the edge, but it's different parameters now. I've got different goals now too in life and I think maybe I've grown up in that area. I stayed mentally in my twenties for way to many years after that decade was over with. There had to be a point in life where I would grow up. Guess now is as good a time as any and I feel SD forced me into it. LOL.

4.) Most recently, I've had to accept another medication, which I've taken before and that's Mtx. I'm not liking the side effects for the 24 hours that follow my shot, but, I can tell you that I can already feel and see the difference. It's working already. I can see and feel the differences in just one week's time.

5.) The fatigue never seems to leave. It's always there. Although I will admit when I'm up and running around, I ignore it. I do have more tendency to pay attention to what my body is saying to me these days. During the time that I pay attention, if I have to rest, I will begrudgingly do so.

Headaches, I've not had much problem with. I've gotten occasional headaches, but nothing to extreme. A dose of Aleve or Advil will clear it. I'm wondering if it could be the vicodin. You might want to check it out in a PDR to see if a side effect of vicodin is headaches. For some reason I'm thinking that I remember someone saying something about vicodin and headaches. But I would check it out to be certain. I know some of the meds that I've taken did cause headaches. Which ones they were I guess I should have written them down, but didn't. There's been so many of them. I do know that I cannot take Motrin or Celebrex. My pancreas doesn't like either of them. LOL. A pity too because Celebrex is a terrific drug. I wish I could take it.

Well, you asked for thoughts and I gave you mine. LOL. I didn't mean to be so long winded. I get to writing and things just sort of flow. I'm real glad that you posted. Please don't be a stranger. Let us get to know you, please. I'm looking forward to getting to know you. One good thing I can say about SD and that is that I am really glad I found you guys. Hope this helps you some. Feel well and email soon.

Much love,

Terry

PS. Always find humor everyday. I have found that has helped to keep me sane. No matter how grim things may appear to be, always see the light side of things. That's what has helped me the most besides having Stilligan's Island to come to.

[Guest guest]

Welcome Kate;

So nice to meet new people. My brain is blank about the activity of the disease for you but I wanted to say welcome.

Melt

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Thanks for the warm welcome! It's a pleasure to met you!

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hi Carey!

Nice to met you to!! I have an apt. on Aug. 2 with a new rhumey. I feel my last one just isn't for me. I would only go to him once a year and all he wanted to do was give me cortisone shots where it hurt most. I hurt all over - not just one specific place. So, I'm hoping this new doctor will do some further testing as I haven't been feeling the greatest lately. I've been with my regular MD for 20 years and I think he was surprised as much as I was regarding my sed. rate. He was just out of medical school when I got sick. I guess you can say I broke him in - hehe. I liked the way he handled my illness although it took some time to diagnose. Stills was not very well known back in '85 nor do I think it's well known today. I do believe there's more info. out there now which is a big help to those just being diagnosed. So, I never took any serious meds once all my blood levels went back to normal. As I grow older I'm finding I can't exert myself like I used to because I know some part of my body will experience serious pain. I can't even sit on my foot for I know I won't be able to walk for at least 3 days. Anyway, my MD put me on vioxx until I see the new rhumey. And have to say it is helping. I also take vicodin at the onset of joint paint. After awhile you get to know the routine very well. And yes, I do experience joint pain and well as alot of stiff joints. Not only when I get up in the morning but throughout the day.

I'm sorry to hear of your diagnoses but thing's do get better. And I truly believe taking it day by day is a very good thing. I do the same as well. When I feel good I go for it. When I hurting, I'm hurting with thoughts in mind the pain will soon be gone. It really is a vicious cycle for me but one learns to live with it. So, hang in there!!

One of the hardest parts of this disease for me is explaining to others. I'm really tired of hearing "What happened to you??" or "what's wrong with you??" when I'm limping around. Sometimes I think people don't believe me when I tell them. So, I've resorted to saying ah, it's just arthritis. Do people ask you these questions?

Re: Newbie

Dear Kate,So nice to meet you! This group is filled with some fun, awesome people willing to listen and help. I should know, I'm kind of a recent new comer and already feel right at home. I started with onset symptoms in August of 2003 and was diagnosed in March 2004 so this disease is all new to me. I have been just taking it day by day. I am kind of in the mitst of ending a bad flare right now.Are you currently under a RD'S care? or just you PCP? What was your docs thoughts on your sed rate being up? Are you feeling any Joint pain?CareyNJ Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hi Kate,

Sorry to hear you're not feeling so good.

I've been quite well since June and my recent blood tests were all good. However like you and others I get exhausted, sleep badly, some joint pain and get the rash most days. And this is when I'm supposed to be in remission !

So it seems there is no set pattern to this disease apart from the exhaustion.

Wishing you well.

Carole

UK

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hello Kate im sorry that your sed rate has jumped,it does happen.Some have many years of remission then the dragon appears again,i hope it goes away soon,its been long time since i had the fevers also,and like you my bloodwork came back normal last visit with my rhumy.Sorry your insurance wont cover the meds,seems to me as if celebrex should be covered thats weird.Of course im still on low dose pred 4mgs,15 mgs MTX,and vioxx i seem to tolerate the meds ok the meth makes me tired sometimes though.You take care hope you feel better soon. d.Canada

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hi Terry!

Thanks for the welcome and your thoughts! And yes, I do have to say we sound very much alike in most of the aspects you mentioned in your email. Age (48) is really starting to get to me as well. The combination of the SD and age (maybe menopause to) is hitting hard and I'm finally realizing that I just can't do the thing's I used to or have to do them at a slower pace. Sometimes I look at my Mother who is 74 and she has more energy than I.

I also pack as much as I can in a 24 hour day. Such as the past 2 days with cleaning up 2 rooms after remodeling. Today I'm paying with my left shoulder stuck to my side and throbbing. Even had to cancel a follow up mamo because of it. But, as long as I can walk I'll find something to do around the house as not to be bored.

Although I experience fatigue at times it's really not a hugh hugh problem. When I'm feeling tired, I as you, do push pass it and continue with my daily routine. I tend to ignore the SD and pretend there's nothing wrong with me. When I hurt I always say to myself - ah, you probably pulled something when working yesterday. Although in the back of my head I know it's not the truth.

Meds do not play a big part of my SD. One anti-inflammatory a day and vicodin as needed. You mentioned about the vicodin giving me headaches. I thought of that as well but I don't take it on a regular bases so I've ruled that out. Maybe it's withdrawal from the vicodin - hehe. I'm careful with the use of it because I don't want to get addicted. Tylenol usually does take care of it most of the time but I hate headaches! I've also thought the headaches are coming from stress. At this time I do have alot of stress in my life and sometimes I feel it's affecting me in the way I've been feeling lately. So, maybe once I see this new rhumey she'll give me some meds that will control the episodes better. I'm open to different drugs as long as they help.

As for your schooling. I know you'll finish. May not be easy at times. We all have to continue on with our lives and we do just that. I lost my job in January and did accept a position yesterday with a new company (starting 8/3). My drive will be much further that my previous job and I know not easy in the winter. I sit and wonder about how I'll drive the distance and deal with the snow/icy roads when hurting. But, I know it will all come together. And so will your education!!!

Once again thanks for your thoughts and welcome! Appreciate it.

Kate

---- Original Message -----

From: 118t@...

To: Stillsdisease

Sent: Thursday, July 15, 2004 12:30 AM

Subject: Re: Newbie

Hi Kate,

I'm real glad that you spoke up and let us know that you are here. Welcome aboard.

Sorry to hear that you are having problems. I can totally relate though because I am going through similar circumstances. Like you, my SD has also come out of a remission of sorts. We sound very similar. I have decreased a lot of my meds, but did get my life back enough, to go back to school. I'm hoping that this recent flare or, whatever, it is doesn't keep me from completing my education. I'll be furious with my SD if that happens. You were describing a lot of what I have been experiencing with this most recent episode. Like you, my labs were fairly normal, yet still with joint pain and swelling, tendonitis too, but little trouble with fever and the rash. Now like you, my SED rate has gone back up and ferritin levels are down again. Frustrating isn't it?

What I've figured out over the last 6 1/2 years having this wonderful stuff is that I own my SD. It's all mine, forever. I can't give it to anyone and I wouldn't want to share it with anyone either, except for you guys because we all have it anyway.We all understand here. LOL. So living with SD has become sort of an adventure with me. Here's what I figured out so far:

1.) At best I will have periods of remission with SD. It's almost like a cancer, it can put into remission, but it can always come back at any given time. SD can also go away again. (This is really my second "real" flare since my initial onset in 1998.) I'm looking forward to it leaving me and the sooner the better.

2.) I'm never going to be a 100% pre -SD. How could I be 100% again when I have gotten older. LOL. I was 39 when it started and now I'm 45 1/2. Age got to me there somewhere. Once I got this concept, my attitude really changed.

3.) When the good times present themself, I live life to the fullest, making everyday count. I do as much as I can pack into a 24 hour period because I am waiting for that other shoe to drop. We never know when the dragon will bear its head. So, this old girl, pushes it to the limits. LOL. It satisfies my need for living on the edge. I still get to live on the edge, but it's different parameters now. I've got different goals now too in life and I think maybe I've grown up in that area. I stayed mentally in my twenties for way to many years after that decade was over with. There had to be a point in life where I would grow up. Guess now is as good a time as any and I feel SD forced me into it. LOL.

4.) Most recently, I've had to accept another medication, which I've taken before and that's Mtx. I'm not liking the side effects for the 24 hours that follow my shot, but, I can tell you that I can already feel and see the difference. It's working already. I can see and feel the differences in just one week's time.

5.) The fatigue never seems to leave. It's always there. Although I will admit when I'm up and running around, I ignore it. I do have more tendency to pay attention to what my body is saying to me these days. During the time that I pay attention, if I have to rest, I will begrudgingly do so.

Headaches, I've not had much problem with. I've gotten occasional headaches, but nothing to extreme. A dose of Aleve or Advil will clear it. I'm wondering if it could be the vicodin. You might want to check it out in a PDR to see if a side effect of vicodin is headaches. For some reason I'm thinking that I remember someone saying something about vicodin and headaches. But I would check it out to be certain. I know some of the meds that I've taken did cause headaches. Which ones they were I guess I should have written them down, but didn't. There's been so many of them. I do know that I cannot take Motrin or Celebrex. My pancreas doesn't like either of them. LOL. A pity too because Celebrex is a terrific drug. I wish I could take it.

Well, you asked for thoughts and I gave you mine. LOL. I didn't mean to be so long winded. I get to writing and things just sort of flow. I'm real glad that you posted. Please don't be a stranger. Let us get to know you, please. I'm looking forward to getting to know you. One good thing I can say about SD and that is that I am really glad I found you guys. Hope this helps you some. Feel well and email soon.

Much love,

Terry

PS. Always find humor everyday. I have found that has helped to keep me sane. No matter how grim things may appear to be, always see the light side of things. That's what has helped me the most besides having Stilligan's Island to come to.Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hello of Canada!

I'll be shortly paying a visit to your country. Every Sept. a bunch of us rent house boats and travel the St. Lawrence for 4 days. We have so much fun. We met so many nice Canadians and I do have to say - they know how to party!!!

Don't be sorry regarding my sed. rate. You know as well as I it happens to all of us and we deal with what has been dropped in our lap.

I live in America and health insurance here is in big trouble. My prescription plan doesn't cover but only lousy meds. Now if there is a generic for Celebrex or Vioxx I would have no problem getting it. I, as well as my doctor's have sent numerous information on my condition to my health insurance provider to get Celebrex and Vioxx covered and they won't budge. So, I resort to doctor's samples to feed my needs. Which is scary cause at times they don't always have samples.

Anyway, I glad to hear your meds agree with you. It doesn't seem like your on a high dosage of anything and hopefully can reduce them even more. Goal is to be med free!!!!!

Thanks for your concern . And do hope your feeling ok

Kate

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Kate..Yes I do too, get tired of explaining my illness to others. Most people are like...."Stills Disease....whats that??" And you know how that goes...I hate getting into detail all the time. Glad to hear that you are trying a new RD. If you're not happy or do not feel comfortable you should get other opinions. I feel it is so important to be or feel comfortable with your doc.

Tootles,

wwwCareywww

[Guest guest]

Hi Kate from PA,

(you lurker you) OK OK a NEWBIE, welcome to the group.

Your statement about the insurance stopping paying for your celebrex makes me wonder just how come we have to become innocent victims of the stupid battle between the pharmaceutical companies and the insurance companies. If the truth were known, they are most likely each others biggest stock holders, and probably share each others board of directors. I did not actually say that did I??? What is wrong with me??

Dan

Montana

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hi to all. I'm sending this email again because it bounced and I don't know if it got through. Thanks Diane/Texas

-- Newbie

Hi All!

Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed

with Stills in 1985 after a very long hospital stay (1.5 months). I

have to admit - I've been lurking on the Stills website for many

years. So, I feel as though I know some of you already Thought it

was time to come out of the closet in hope's I may be of some help or

visa versa.

Once diagnosed and proper meds were given I was under control pretty

fast. When all my blood work was normal I returned to work (apx. 1

year later) and was taken off of all meds. Over the years I've had

problems with swelling, tendonitis - no fevers spikes or rashes

though. I always thought the swelling and tendonitis were from "just

over doing it". My rhuemy put me on Celebrex - 2 daily - which

seemed to help some. Insurnace would not cover it anymore so I had

to stop and he put me on vicodin for the pain after trying other anti-

inflamatories. Still thinking I was always over doing it. Now, I'm

not so sure of my thoughts. I recently had some blood work and my

sed. rate is 70. I know it's not that high but I have to say I was

quite surprised to hear the news and I think my MD was surprised as

well. I also find myself tired alot and having slight headaches off

and on. Any one have any thoughts on this?

Kate

[Guest guest]

Hello Dianne tell us more please,welcome to Stilligans island.Ask qeustions you must have a few huh.Take care. d.Canada

Newbie

Hi All!

Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed

with Stills in 1985 after a very long hospital stay (1.5 months). I

have to admit - I've been lurking on the Stills website for many

years. So, I feel as though I know some of you already Thought it

was time to come out of the closet in hope's I may be of some help or

visa versa.

Once diagnosed and proper meds were given I was under control pretty

fast. When all my blood work was normal I returned to work (apx. 1

year later) and was taken off of all meds. Over the years I've had

problems with swelling, tendonitis - no fevers spikes or rashes

though. I always thought the swelling and tendonitis were from "just

over doing it". My rhuemy put me on Celebrex - 2 daily - which

seemed to help some. Insurnace would not cover it anymore so I had

to stop and he put me on vicodin for the pain after trying other anti-

inflamatories. Still thinking I was always over doing it. Now, I'm

not so sure of my thoughts. I recently had some blood work and my

sed. rate is 70. I know it's not that high but I have to say I was

quite surprised to hear the news and I think my MD was surprised as

well. I also find myself tired alot and having slight headaches off

and on. Any one have any thoughts on this?

Kate

[Guest guest]

Im sorry i did not read down farther lol.Your symtoms almost exactly pretty normal Dianne,it is extreme isnt it,im glad your experienceing releif with the new meds im also same meds,unlike you the vioxx seems to work for me 4mgs pred 15 mgsMTX and vioxx pill a day heh seems be workin lol concretes been setting up like rockets here and im able to keep up in other words im doin exceptionally well(ohh yeah im a cement finisher,all of 2002 was a wash for me unable to do simpleset things like well anything for that matter was bedridden most the time).Did you present at onset any of the organ problems pericardis,pleuaracy ect im geussing with those chest pains you maybe did Eh.Must be awful hot in Texas,cause im in Alberta,Canada and its smokin here,rarly gets this hot & humid here i hate it lol You take care. d.Canada

Newbie

Hi All!

Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed

with Stills in 1985 after a very long hospital stay (1.5 months). I

have to admit - I've been lurking on the Stills website for many

years. So, I feel as though I know some of you already Thought it

was time to come out of the closet in hope's I may be of some help or

visa versa.

Once diagnosed and proper meds were given I was under control pretty

fast. When all my blood work was normal I returned to work (apx. 1

year later) and was taken off of all meds. Over the years I've had

problems with swelling, tendonitis - no fevers spikes or rashes

though. I always thought the swelling and tendonitis were from "just

over doing it". My rhuemy put me on Celebrex - 2 daily - which

seemed to help some. Insurnace would not cover it anymore so I had

to stop and he put me on vicodin for the pain after trying other anti-

inflamatories. Still thinking I was always over doing it. Now, I'm

not so sure of my thoughts. I recently had some blood work and my

sed. rate is 70. I know it's not that high but I have to say I was

quite surprised to hear the news and I think my MD was surprised as

well. I also find myself tired alot and having slight headaches off

and on. Any one have any thoughts on this?

Kate

[Guest guest]

Hi Diane! I'm Kate from Pa. and just recently joined this group this past week after many years of lurking

So far my experience here has been very positive and I'm sure you'll find it to be the same.

Hopefully your stills is under control. I've been dealing with it for 20 years and I'm fearing it's acting up again. I try to blow off that idea but there are some days when it gets to me mentally. In trying to control my thought process I force myself to go out and do thing's - shopping, gardening, etc. - as though nothing is wrong. Usually works. As I tell myself and everyone else - it does get better!!

Ok, just wanted to say hi and welcome aboard!

Kate

Newbie

Hi All!

Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed

with Stills in 1985 after a very long hospital stay (1.5 months). I

have to admit - I've been lurking on the Stills website for many

years. So, I feel as though I know some of you already Thought it

was time to come out of the closet in hope's I may be of some help or

visa versa.

Once diagnosed and proper meds were given I was under control pretty

fast. When all my blood work was normal I returned to work (apx. 1

year later) and was taken off of all meds. Over the years I've had

problems with swelling, tendonitis - no fevers spikes or rashes

though. I always thought the swelling and tendonitis were from "just

over doing it". My rhuemy put me on Celebrex - 2 daily - which

seemed to help some. Insurnace would not cover it anymore so I had

to stop and he put me on vicodin for the pain after trying other anti-

inflamatories. Still thinking I was always over doing it. Now, I'm

not so sure of my thoughts. I recently had some blood work and my

sed. rate is 70. I know it's not that high but I have to say I was

quite surprised to hear the news and I think my MD was surprised as

well. I also find myself tired alot and having slight headaches off

and on. Any one have any thoughts on this?

Kate

[Guest guest]

Kirk - the questions are just so annoying. Sometimes I want to wear a shirt that says...PLEASE DON'T ASK!!!!!

Here's a thought. As a group maybe we should all get a shirt with that saying on it and on our bad days wear it. Hehe Wonder how many people will ask then??? Probably alot! Ya know, if people were genuinely interested I wouldn't mind telling them what was wrong. I feel like they're just being nosey though. My answer is it's arthritis and the conversation usually ends with OH. And to top it off it's the same people asking the same question all the time. Jez, I have to assume they have no memory?

I have not yet had the experience of someone diagnosing me. But another question I'm asked alot of is - can't you do anything about it ??? Then I have to go into the meds story and they still aren't satisfied. I can go on and on about this.....

I have to say carrying a pamphlet around is a good thing. I think I'll print one off the website and take it along with me. Thanks for sharing Kirk.

Have a great day!

Kate

Re: Newbie

Kate wrote:

One of the hardest parts of this disease for me is explaining to others. I'm really tired of hearing "What happened to you??" or "what's wrong with you??" when I'm limping around. Sometimes I think people don't believe me when I tell them. So, I've resorted to saying ah, it's just arthritis. Do people ask you these questions?

I get that question at least 5 times a day. Some people are astonished, others shocked. I carry around a Stills pamphlet in my wallet and that answers a lot of questions for anyone who asks that really wants to know.

It does at times get to me, as a lot of people that have asked and I have told seem to think they are doctors! I have been told by numerous people that I have this or that. I have been told that I have Lyme disease by many. I wish and hope I did, as that is very easily treated, but two lyme tests later, I am still in the same boat. I hope my doctors are wrong, but don't think so.

The "diagnosticians" are the part I hate the most. I am to the point that I walk away in some cases, as I am sick of hearing it.

Kirk.Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hi there Carol!

Nice to met you! I'm so glad to hear that your blood tests were all good. When receiving news like that it's such a relief, isn't it?

In my 20 years dealing with Stills I never got the fevers or rash back from the initial onset. I consider myself very lucky. My fevers would get so high the nurses wouldn't even tell me how high they were. Would only give me something else to worry about. As for the rashes, I would only get it right before my fever started. Once the fever was in high gear the rash would go away.

Thanks for the welcome Carole. Wishing you well to

Kate

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Carey -

I can see that I'm not the only one who gets annoyed with the questions. As Kirk pointed out he carries a pamphlet with him and I'm going to do the same in hopes it will help. At times I've referred people to the Stills website so their questions could be answered. I know they didn't check it out though.

Yes, I'm excited about seeing a new RD. Not that I'm looking forward to hopefully some testing and possible new meds. But, I don't like the way I'm feeling and need to do something about it. If it is the Stills acting up I don't want it to get out of hand. My apt. isn't until Aug. 2 but I will let you guys know how I make out.

Hopefully this new RD will know something about Stills! If not I may be off to Kirk's Doc. in Philly.

Nite,

Kate

Re: Newbie

Kate..Yes I do too, get tired of explaining my illness to others. Most people are like...."Stills Disease....whats that??" And you know how that goes...I hate getting into detail all the time. Glad to hear that you are trying a new RD. If you're not happy or do not feel comfortable you should get other opinions. I feel it is so important to be or feel comfortable with your doc.Tootles,wwwCareywww Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hehe Dan. I've been called many thing's but certainly not a lurker Thanks so much for the welcome!

Don't get me started on the insurance issues. Makes me so damn mad!! Wonder what they would do? Who are they to determine what drugs I should take? It's all about the almighty dollar. What has America come to??

Sorry about going off. I told ya this subject makes me mad

Hand shake,

Kate

Newbie

Hi All!Would like to introduce myself. I'm Kate from NE Pa. Was diagnosed with Stills in 1985 after a very long hospital stay (1.5 months). I have to admit - I've been lurking on the Stills website for many years. So, I feel as though I know some of you already Thought it was time to come out of the closet in hope's I may be of some help or visa versa. Once diagnosed and proper meds were given I was under control pretty fast. When all my blood work was normal I returned to work (apx. 1 year later) and was taken off of all meds. Over the years I've had problems with swelling, tendonitis - no fevers spikes or rashes though. I always thought the swelling and tendonitis were from "just over doing it". My rhuemy put me on Celebrex - 2 daily - which seemed to help some. Insurnace would not cover it anymore so I had to stop and he put me on vicodin for the pain after trying other anti-inflamatories. Still thinking I was always over doing it. Now, I'm not so sure of my thoughts. I recently had some blood work and my sed. rate is 70. I know it's not that high but I have to say I was quite surprised to hear the news and I think my MD was surprised as well. I also find myself tired alot and having slight headaches off and on. Any one have any thoughts on this? Kate Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Kate wrote:

One of the hardest parts of this disease for me is explaining to others. I'm really tired of hearing "What happened to you??" or "what's wrong with you??" when I'm limping around. Sometimes I think people don't believe me when I tell them. So, I've resorted to saying ah, it's just arthritis. Do people ask you these questions?

I get that question at least 5 times a day. Some people are astonished, others shocked. I carry around a Stills pamphlet in my wallet and that answers a lot of questions for anyone who asks that really wants to know.

It does at times get to me, as a lot of people that have asked and I have told seem to think they are doctors! I have been told by numerous people that I have this or that. I have been told that I have Lyme disease by many. I wish and hope I did, as that is very easily treated, but two lyme tests later, I am still in the same boat. I hope my doctors are wrong, but don't think so.

The "diagnosticians" are the part I hate the most. I am to the point that I walk away in some cases, as I am sick of hearing it.

Kirk.

[Guest guest]

Hi Kate,

I'm a bit behind in welcoming you to our group. Sometimes I just lurk and read and not respond but it seems these last few days I've been mouthing off like crazy. I'm usually quite quiet.

When people ask me what wrong, I always say ..... SEVERE Arthritis .. they usually never go further with questions. Explaining Stills Disease wouldn't mean much to them and they'd get bored after a few of my explanations of each and every ache/pain/itch/fever.... and on and on. Most of my friends accept what I have and just ask how I am feeling when they see me.

Don't forget.....we are having a meeting conference in Philadelphia in October. Come if you can. )

Mi. Carmen

[Guest guest]

Hi Carmen!

Yes, I do agree with you on explaining the disease. As I said before I as well say arthritis. Then most people think - big deal. But that's ok. I'm not looking for sympathy. Just people to stop asking me what's wrong.

I to usually just sit back, read and lurk. I believe I already have a nickname here though - the lurker - hehe. That came from Dan and I can tell he has a great sense of humor.

I wasn't aware there's a conference in Philly in October. Thanks so much for the insight. Where and what date is it?

What goes on at these conferences?

Thanks for much for your welcome. (even if you are a bit late).

I'll be looking forward to hearing about the conference.

Cheers,

Kate

Re: Newbie

Hi Kate,

I'm a bit behind in welcoming you to our group. Sometimes I just lurk and read and not respond but it seems these last few days I've been mouthing off like crazy. I'm usually quite quiet.

When people ask me what wrong, I always say ..... SEVERE Arthritis .. they usually never go further with questions. Explaining Stills Disease wouldn't mean much to them and they'd get bored after a few of my explanations of each and every ache/pain/itch/fever.... and on and on. Most of my friends accept what I have and just ask how I am feeling when they see me.

Don't forget.....we are having a meeting conference in Philadelphia in October. Come if you can. )

Mi. CarmenVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Hi Gang:

No need to print a BROCHURE off the web site as they don't come out so good. Just let me know how many you want and I will send them to you. That's what they are for and I have plenty of new ones updated as of 2004. Just send me your snail mail address to my e-mail address a tell me how many and I will get them out, no charge but we are always accepting donations! Make sure you give me the correct zip code, PLEASE! Take care now and be PAIN FREE! Love Y'all!

WE WILL WIN

Love Y'all

Dad & Mom

Bob & Carole

Panama City, FL

Please visit the International Stills Disease Foundation Inc. Web Site at

www.stillsdisease.org

Politicians are like Diapers... they should be changed often and for the same reasons!

[Guest guest]

Hi Kate,

October 11, 12, 13 in Philly. It's just a meeting to get to know one another. We've had two so far in Las Vegas but I didn't attend them so I do want to meet other Stilligans face to face so I can picture them when they post and also to swap stories about our medications/aches and pains/families. It should be fun ! I've met Pattymelt and Tricia and love them to death now and would like to meet others. Please try to come.

I don't believe a hotel/motel has been chosen. I think it will be quite a ways out of Philadelphia due to the high cost of rooms but I'm not sure. I'm waiting for a final decision. I hope it's an Embassy Suite Hotel as they have a separate bedroom and I have a husband that SNORES !!!! He'll get the couch !! )

They have free breakfasts also ! ) I have to put something in my tummy each morning so I can take the pills that require food with them.

I think there are some good air fares now for those who are not close enough to drive. Check them out. Can't give you any airline names but.......

Happy weekend !

Mi. Carmen

[Guest guest]

Hi there Carm!

I'm afraid I won't be able to make the Philly conference. I'm starting a new job in Aug. I have a Canadian trip already planned for Sept. and my new boss was nice enough to give me the days off I needed. I would never think about asking for 3 days off in October. If one of the conference days were on the weekend I'd take a ride for the day (I'm only 2 hours from Philly). Unfortunately they are not. So, maybe next year I'll be able to attend. Would love to met some of you Stilligans!

Cheers,

Kate

Re: Newbie

Hi Kate,

October 11, 12, 13 in Philly. It's just a meeting to get to know one another. We've had two so far in Las Vegas but I didn't attend them so I do want to meet other Stilligans face to face so I can picture them when they post and also to swap stories about our medications/aches and pains/families. It should be fun ! I've met Pattymelt and Tricia and love them to death now and would like to meet others. Please try to come.

I don't believe a hotel/motel has been chosen. I think it will be quite a ways out of Philadelphia due to the high cost of rooms but I'm not sure. I'm waiting for a final decision. I hope it's an Embassy Suite Hotel as they have a separate bedroom and I have a husband that SNORES !!!! He'll get the couch !! )

They have free breakfasts also ! ) I have to put something in my tummy each morning so I can take the pills that require food with them.

I think there are some good air fares now for those who are not close enough to drive. Check them out. Can't give you any airline names but.......

Happy weekend !

Mi. CarmenVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.