Re: As requested I am introducing myself........

[Guest guest]

Hello Tracilyn,love your name never heard that one before,welcome to Stilligans Island.Sorry you had to suffer so long to get a diagnosis but maybe now you can get better,dont know about the planquil(sp)but sometimes the meds can take awhile to work,you and your doctor will have to work together to find out what works.everyone here is on different combinations of meds and what works for one doesnt neccesarily work for the next.I am d,i just turned 33 and have had Stills since Oct 2002.Unlike you though i was fairly healthy before all hell broke loose(and i was diagnosed as i know now fairly quikly about 3 months if i remember right lol).I hope you can find a medication that works and you can get some of your life normal things back.Heh we also have another member AKA superman who has twin girls as well,your so lucky lol Take care hope it gets better soon. d.Canada

As requested I am introducing myself........

Hi,I am new to this group and a newbie to Still's Disease, so I am stilleducating myself while at the same time being angry at the doctor for justsaying "You have Still's and here is the Plaquenil 200mg BID..."To take it back to the beginning....I am a 33 year old(soon to be 34 on the 27th of this month.) Mom of 4beautiful and somewhat understanding girls, ages 16,12,11, and 11. Yesbefore the punchline hits.. I have a set of twin girls.(albeit they weresuppose to A Baby Boy). The pain from the disease started when I was 17after my first child was born and never really quit except for a small shortperiod of time after my hysterectomy. Then it started all over again. Thesurgeon said it was from the Severe Endo I had. Never mind all the Militarydoctors prior to that episode, told me it was in my head and to just take800mg of Motrin 3 times a day. That helped for a while but never real good.Then last summer it came to a head and went downhill from there. I am nowstaying at home as last summer the pain I was in got to be too much workingfor Walmart as an overnite stock team member. Though I miss my friends, Isee them often when I can. I thought that I would get better not working ina laborous field,but I only got worse as the time went on. The worst cameto be as the summer turned to fall and I came down with Bacterial Pnuemoniafrom there I went into Mono and it got into the lining of my heart and lungsboth. That put me in the hospital when hubby came home and found me on thekitchen floor passed out. I spent the week of Thanksgiving in the hospitaltrying to determine what happened or why. Then off to the cardiologist tosee what needed to be done. Found I had Mitral Valve Prolapse and wediscussed some of my other symptoms I was having and how long it had goneon. She did a bunch of blood work and decided it was time to send me to aRhuematologist to determine why I had episodes of fever,fatigue, andarthritic pain. The Labs for SLE, RA, and Lymes Disease were negative for acause.The only lab test that was bad,the cardio said was that my C-ReactiveProtein was elevated. The latest doc ran a few xrays and a bone scan whichis negative for anything more than moderate arthritic areas, as well as thebone scan shows an up take in a ankle I broke 3 years ago, a moderate uptake in the hips,knees, and shoulders and hands. Some of which is attributedto many factures through my lifetime.(of which was never really explained).All I had to do was look at doing something and I broke a bone with the theexception of the time I tried to deck my older brother and he ducked and Ihit the Cinderblock wall instead.OUCH!!!!Anyhow, last week on Thursday, the RD said it was Still's and started me onthe Plaquenil. He told me it would get better but that I needed to stay onthe Percocet for awhile longer til this med starts to work and then I willbe able to back off of it. Since he has seen me at my worst and not able towalk. And the evenings are the worst for me. I crawl through the house upthe stairs to the bed and there I stay until the next morning. And there aretimes when I feel great and I want to not take the Pain meds and I push tohard to keep going for the sake of my hubby and girls.Then I pay theultimate price for it. I have always done for them all so this hard for menot to do and let them do. Rainy and foul weather days are the worst for meand I want to scream and holler to let it all end.Anyhow, this has been long enough and I need to go fix hubby some lunch sohe won't starve going to work. If I forgot something in all of this, pleaselet me know.Tracilynaka NanabuggSoMdVisit 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, Tracilyn,

Pretty name.... Welcome to this group. I think you will find more help from us than from your doctors. I surely have and I love and appreciate all our members so much.

Do not hesitate to ask any question for advice ..... , medications..., doctors..., feelings...., We are there for you ! I think once you have found the right medication, you will start feeling better. There are quite a few out there for us Stilligans and we all seem to take different ones to make us more comfortable. Hopefully, you will experience a remission or maybe, like Superman, you'll get better and better and not need any drugs. We all hope for that !!

Find yourself a good, understanding Rheumatologist that is knowledgeable about Stills and, hopefully, he/she can start you on the right track to wellness.

We are of all ages here. I'm sixty-two and I've had Stills for almost ten years. I take Enbrel and MTX and that combination works for me. I hope you can find something that will help you.

Mi. Carmen

Are you from land?

[Guest guest]

I really am going to bed now. Got side tracked by a friend in California in Instant Message. He can jabber for hours.....

You should get to bed also...

[Guest guest]

Sorry......that should have gone to Tricia's private e-mail. We're both up late tonight...

Mi. Carmen

[Guest guest]

Welcome Tracilyn. I too am I "newbie" here, having first been sick in mid January of this year and clinically diagnosed since the beginning of April.

I am in no way "in control" of this damn disease either, but I am becoming a little better at dealing with it, at least from a mental standpoint. It sounds to me like you may have had this for quite some time, and that stinks, but maybe now they can get you pointed in the right direction.

From a purely personal standpoint I must recommend keeping in touch with this group, as the people here have been one of the very few positive things I have come across since I first was sick in January. The information and advice are damn near priceless!

Four kids....yikes!!! Good for you, though. I thought two were tough! I have two boys, ages 5 1/2 & 2 1/2. I am also 33, and live in N E Pennsylvania. I have noticed that cool, damp days really send me downhill fast also, and pray that this will change shortly. I can also relate to the not being "accustomed" to "not doing much" and have been trying my hardest to keep on working. I really don't have much of a choice on that front, as I am self employed. I am fortunate in that the other two guys at my garage can make up the difference when I am unable to work, at least to a point. We may be hiring another kid (tech school student) on a part time basis (at first) to try to ease the load on everyone there.

I like the cinder block wall story! My brother and I are only 15 months apart, and absolutely despised each other growing up. I was the older one, and much stronger than him, but he more than made up the difference by hitting me with whatever he could, whenever he could. I have been hit with bats, hammers, 2x4's and stabbed with a curtain rod. Fortunately, we never seriously hurt one another, and really do get along well now. Thinking back, my parents deserve some kind of metal for putting up with the two of us without killing us. I can't remember how many trips to the ER there were for stitches, or how many holes mysteriously "appeared" in the walls of their house, or windows that inexplicably were broken, etc.

What other medications do they have you on? I am on 20 mg of Prednisone per day, Vioxx (I don't think that stuff does anything other than help give me heartburn), Nortryptaline (supposed to prevent the brutal headaches I keep getting, it isn't too good, either), Buspirone (sp?), Betabutyl ASA & CAFF (headache pills that don't do too much other than "maintain" the pain) and for when I am not working or driving, Vicodin, which I have learned is effective IF I can take it before the pain becomes too harsh. Once the pain becomes intense, nothing has helped me.

Well, glad to "meet" you, hope everything works out for you. Have as good a day as possible, Kirk.

As requested I am introducing myself........

Hi,I am new to this group and a newbie to Still's Disease, so I am stilleducating myself while at the same time being angry at the doctor for justsaying "You have Still's and here is the Plaquenil 200mg BID..."To take it back to the beginning....I am a 33 year old(soon to be 34 on the 27th of this month.) Mom of 4beautiful and somewhat understanding girls, ages 16,12,11, and 11. Yesbefore the punchline hits.. I have a set of twin girls.(albeit they weresuppose to A Baby Boy). The pain from the disease started when I was 17after my first child was born and never really quit except for a small shortperiod of time after my hysterectomy. Then it started all over again. Thesurgeon said it was from the Severe Endo I had. Never mind all the Militarydoctors prior to that episode, told me it was in my head and to just take800mg of Motrin 3 times a day. That helped for a while but never real good.Then last summer it came to a head and went downhill from there. I am nowstaying at home as last summer the pain I was in got to be too much workingfor Walmart as an overnite stock team member. Though I miss my friends, Isee them often when I can. I thought that I would get better not working ina laborous field,but I only got worse as the time went on. The worst cameto be as the summer turned to fall and I came down with Bacterial Pnuemoniafrom there I went into Mono and it got into the lining of my heart and lungsboth. That put me in the hospital when hubby came home and found me on thekitchen floor passed out. I spent the week of Thanksgiving in the hospitaltrying to determine what happened or why. Then off to the cardiologist tosee what needed to be done. Found I had Mitral Valve Prolapse and wediscussed some of my other symptoms I was having and how long it had goneon. She did a bunch of blood work and decided it was time to send me to aRhuematologist to determine why I had episodes of fever,fatigue, andarthritic pain. The Labs for SLE, RA, and Lymes Disease were negative for acause.The only lab test that was bad,the cardio said was that my C-ReactiveProtein was elevated. The latest doc ran a few xrays and a bone scan whichis negative for anything more than moderate arthritic areas, as well as thebone scan shows an up take in a ankle I broke 3 years ago, a moderate uptake in the hips,knees, and shoulders and hands. Some of which is attributedto many factures through my lifetime.(of which was never really explained).All I had to do was look at doing something and I broke a bone with the theexception of the time I tried to deck my older brother and he ducked and Ihit the Cinderblock wall instead.OUCH!!!!Anyhow, last week on Thursday, the RD said it was Still's and started me onthe Plaquenil. He told me it would get better but that I needed to stay onthe Percocet for awhile longer til this med starts to work and then I willbe able to back off of it. Since he has seen me at my worst and not able towalk. And the evenings are the worst for me. I crawl through the house upthe stairs to the bed and there I stay until the next morning. And there aretimes when I feel great and I want to not take the Pain meds and I push tohard to keep going for the sake of my hubby and girls.Then I pay theultimate price for it. I have always done for them all so this hard for menot to do and let them do. Rainy and foul weather days are the worst for meand I want to scream and holler to let it all end.Anyhow, this has been long enough and I need to go fix hubby some lunch sohe won't starve going to work. If I forgot something in all of this, pleaselet me know.Tracilynaka NanabuggSoMdVisit 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]

Welcome Tracilyn,

We are glad to have you.

Lynn

As requested I am introducing myself........

>

>

> Hi,

> I am new to this group and a newbie to Still's Disease, so I am still

> educating myself while at the same time being angry at the doctor for just

> saying " You have Still's and here is the Plaquenil 200mg BID... "

>

> To take it back to the beginning....

> I am a 33 year old(soon to be 34 on the 27th of this month.) Mom of 4

> beautiful and somewhat understanding girls, ages 16,12,11, and 11. Yes

> before the punchline hits.. I have a set of twin girls.(albeit they were

> suppose to A Baby Boy). The pain from the disease started when I was 17

> after my first child was born and never really quit except for a small

short

> period of time after my hysterectomy. Then it started all over again. The

> surgeon said it was from the Severe Endo I had. Never mind all the

Military

> doctors prior to that episode, told me it was in my head and to just take

> 800mg of Motrin 3 times a day. That helped for a while but never real

good.

> Then last summer it came to a head and went downhill from there. I am now

> staying at home as last summer the pain I was in got to be too much

working

> for Walmart as an overnite stock team member. Though I miss my friends, I

> see them often when I can. I thought that I would get better not working

in

> a laborous field,but I only got worse as the time went on. The worst came

> to be as the summer turned to fall and I came down with Bacterial

Pnuemonia

> from there I went into Mono and it got into the lining of my heart and

lungs

> both. That put me in the hospital when hubby came home and found me on the

> kitchen floor passed out. I spent the week of Thanksgiving in the hospital

> trying to determine what happened or why. Then off to the cardiologist to

> see what needed to be done. Found I had Mitral Valve Prolapse and we

> discussed some of my other symptoms I was having and how long it had gone

> on. She did a bunch of blood work and decided it was time to send me to a

> Rhuematologist to determine why I had episodes of fever,fatigue, and

> arthritic pain. The Labs for SLE, RA, and Lymes Disease were negative for

a

> cause.The only lab test that was bad,the cardio said was that my

C-Reactive

> Protein was elevated. The latest doc ran a few xrays and a bone scan

which

> is negative for anything more than moderate arthritic areas, as well as

the

> bone scan shows an up take in a ankle I broke 3 years ago, a moderate up

> take in the hips,knees, and shoulders and hands. Some of which is

attributed

> to many factures through my lifetime.(of which was never really

explained).

> All I had to do was look at doing something and I broke a bone with the

the

> exception of the time I tried to deck my older brother and he ducked and I

> hit the Cinderblock wall instead.OUCH!!!!

>

> Anyhow, last week on Thursday, the RD said it was Still's and started me

on

> the Plaquenil. He told me it would get better but that I needed to stay on

> the Percocet for awhile longer til this med starts to work and then I will

> be able to back off of it. Since he has seen me at my worst and not able

to

> walk. And the evenings are the worst for me. I crawl through the house up

> the stairs to the bed and there I stay until the next morning. And there

are

> times when I feel great and I want to not take the Pain meds and I push to

> hard to keep going for the sake of my hubby and girls.Then I pay the

> ultimate price for it. I have always done for them all so this hard for

me

> not to do and let them do. Rainy and foul weather days are the worst for

me

> and I want to scream and holler to let it all end.

>

> Anyhow, this has been long enough and I need to go fix hubby some lunch so

> he won't starve going to work. If I forgot something in all of this,

please

> let me know.

>

>

> Tracilyn

> aka NanabuggSoMd

>

>

>

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The 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]

Greetings Tracilyn!

Welcome to what I feel is the "greatest support group in the world!" But, of

course the only other "support group" I am familiar with is my husbands

support group of "VietNam Vets," and I may be a bit prideful here...but,

I think ours is better. He tells me that at his group meetings, they get

into a lot of arguments. That is a real rarity here on "Stilligan's Island."

I am one of the "older" ones as far as age goes...but, still "young at heart."

Have had the Stills disease from onset to this year will be almost 33 years

with a couple of short remissions. I am now 64 and could well be the oldest

one here with the Stills. I have had every test known to mankind I think. I

lived with the disease and NO diagnosis until 16 years ago. It has been

a long tough road, but I have managed to find much happiness anyway.

If you would like to read about my Stills history and see a picture of my

husband and myself please go to http://www.stillsdisease.org click on

"member histories" and then click on Tricia Looker." In the picture...

my husband looks like he is making a "face," *but,* he had to shave his

mustache off the day before for some exteme dental work, and instead

of his mustache, he has a very swollen top lip.

You will learn everything you *never* wanted to know about this AOSD

disease that we sometimes call the "dragon."

Again, Tracilyn...welcome! Congratualtions on what sounds like a wonderful

family!

from Wisconsin,

Tricia

[Guest guest]

Hi Tracilyn, sorry you're ill but welcome to a lovely group. I'm 37 and

mother of 3. Not easy when you're sick, is it? Anyway, you'll certainly

find support here.

Love

C 2 (Caroline no. 2) UK

>

>

>   Hi,

> I am new to this group and a newbie to Still's Disease, so I am still

> educating myself while at the same time being angry at the doctor for

> just

> saying " You have Still's and here is the Plaquenil 200mg BID... "

>

> To take it back to the beginning....

> I am a 33 year old(soon to be 34 on the 27th of this month.) Mom of 4

> beautiful and somewhat understanding girls, ages 16,12,11, and 11. Yes

> before the punchline hits.. I have a set of twin girls.(albeit they

> were

> suppose to A Baby Boy). The pain from the disease started when I was

> 17

> after my first child was born and never really quit except for a

> small short

> period of time after my hysterectomy. Then it started all over again.

> The

> surgeon said it was from the Severe Endo I had. Never mind all the

> Military

> doctors prior to that episode, told me it was in my head and to just

> take

> 800mg of Motrin 3 times a day. That helped for a while but never real

> good.

> Then last summer it came to a head and went downhill from there.  I

> am now

> staying at home as last summer the pain I was in got to be too much

> working

> for Walmart as an overnite stock team member. Though I miss my

> friends, I

> see them often when I can.  I thought that I would get better not

> working in

> a laborous field,but I only got worse as the time went on.  The worst

> came

> to be as the summer turned to fall and I came down with Bacterial

> Pnuemonia

> from there I went into Mono and it got into the lining of my heart

> and lungs

> both. That put me in the hospital when hubby came home and found me

> on the

> kitchen floor passed out. I spent the week of Thanksgiving in the

> hospital

> trying to determine what happened or why. Then off to the

> cardiologist to

> see what needed to be done. Found I had Mitral Valve Prolapse and we

> discussed some of my other symptoms I was having and how long it had

> gone

> on. She did a bunch of blood work and decided it was time to send me

> to a

> Rhuematologist to determine why I had episodes of fever,fatigue, and

> arthritic pain. The Labs for SLE, RA, and Lymes Disease were negative

> for a

> cause.The only lab test that was bad,the cardio said was that my

> C-Reactive

> Protein was elevated.  The latest doc ran a few xrays and a bone scan

> which

> is negative for anything more than moderate arthritic areas, as well

> as the

> bone scan shows an up take in a ankle I broke 3 years ago, a moderate

> up

> take in the hips,knees, and shoulders and hands. Some of which is

> attributed

> to many factures through my lifetime.(of which was never really

> explained).

> All I had to do was look at doing something and I broke a bone with

> the the

> exception of the time I tried to deck my older brother and he ducked

> and I

> hit the Cinderblock wall instead.OUCH!!!!

>

> Anyhow, last week on Thursday, the RD said it was Still's and started

> me on

> the Plaquenil. He told me it would get better but that I needed to

> stay on

> the Percocet for awhile longer til this med starts to work and then I

> will

> be able to back off of it.  Since he has seen me at my worst and not

> able to

> walk. And the evenings are the worst for me. I crawl through the

> house up

> the stairs to the bed and there I stay until the next morning. And

> there are

> times when I feel great and I want to not take the Pain meds and I

> push to

> hard to keep going for the sake of my hubby and girls.Then I pay the

> ultimate price for it.  I have always done for them all so this hard

> for me

> not to do and let them do. Rainy and foul weather days are the worst

> for me

> and I want to scream and holler to let it all end.

>

> Anyhow, this has been long enough and I need to go fix hubby some

> lunch so

> he won't starve going to work.  If I forgot something in all of this,

> please

> let me know.

>

>

> Tracilyn

> aka NanabuggSoMd

>

>

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The 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 Tracilyn..Hoping you get a remission that lasts soooo long you won't know what this disease is or was!!!.. I have had this since 1972..plenty of healthy days(forget the bad ones)...anyway..hang in there..we are here for any questions..or just a hug Love Liz NJ