HELLO TO ALL

[Guest guest]

Hi to all I'm what you all call a new be so here's my story or as you

say intro:

First I have a learning problem called dyslectic (can't spell worth a

bean, spell as it sounds so hang in there with me )

I was told I had OASD and fibermialga in Dec 2000 this was after a

long time of problems that looking back was over a few year period but

from Jan 2000 things started to get bad 1st Jan kidney stone then in

June another kidney stone then July Parricides then Aug. 2000 got up

from a two hour nap and I was seeing blurred and dubbed now I wear

glasses then just about lost job from missing to much work ( I'm sure

none of you know how that is right!) then on Sept. 15th I went on Med.

leave and have not work from that point but then the doctor visit came

almost 4 a week they ran every test you could think of as at first they

thought I mite have cancer but they were not saying it but with the test

they ran and the internet you did not have to be a rocket sciencest to

know what was going on then in Oct. 2000 my first over night hospital

stay and they still had no idea they tested for every thing but to see

if I was pregnant ( I'm a male but this would have been okay could used

the money) after I got out both my internal Doctors ,urologist and my

oncologist suggested that I go some were like the Mayo or Stanford med.

center we went to Stanford after three Doctors there in just as many

days they said it was Still's (what is that ? ) will thanks to the

internet and this group I found out what I got and how to deal with it .

to date I have been hospitalized 3 times 4 days each and countless er

room visit for gut pain (got to love Demerol and or morphine ) some

times I go home in hours like 8 if I'm lucky or they have me as a guest

over night or more.

I fight pain , and night sweets ( sheet changers) some days just to

get out of bed is all I can do I try to walk every day (I have become a

shopaholic!) just to keep every thing moving . the rest I thought I was

the only one tell I read all your post and well you have all said it

better then I.

Now I have Questions for all of you

1) any one with extreme upright gut pains ( almost all the time 6-10 on

scale 1 good -10 bad)

2) USA people only any luck or info that may help getting SSDI

3) lose of height 5'11'' to 5'9.5''

4) lose of the wild thing drive

5) problems with depression on and off because of the evil one (Still's)

6) blood pressure problems both high and low ( think from meds)

7) problems using rumacade infusion therapy( head akces , extreme pain

from 1st day to 14 days out could happen any time but each time I end up

in the ER or hospitalized then start to feel good for one to two weeks

then back to normal pain and soreness

8) any you can think of ( your turn to work for me and the pay is real

bad like na da)

know for what you all really want to know

Name J. GIlbertson (Marty)

I live in Boise Idaho USA

I'm 43 going on 90 (How I feel)

My wife of 18 years married and 5 engaged is

Kids two Boy 16 L. Gilbertson (Marty also )

Girl 11 A. Gilbertson

two dogs both mixed one pit bull /pointer 12 years

Visala/German Pointer 2 years

I no longer work but when I did I drove City bus and Loved it!!!!!!!!!

used to fish and hunt all the time year round ( to hard and painful so

no fun now but I can dream right)

my wife has been the biggest help for me threw all this and has been one

of the biggest supports helping me do things when I can't and chewing me

out when I tend to over do it she also try to make sure I get my rest my

kids are now becoming a help but a first they where afraid . This all

happened at a hard time in our lives as at the time I got out of the

hospital the first time the Doctors did not want me more then 50 miles

from them and at this time My Grandmother and father in-law passed away

in three weeks of each other and I could not go see them before they

left us as they lived In Calif. 12 hours by car away ( I'm just up now

to driving for two max. and a three hour show is just a real pain!)

Meds I take daily, allopurinol 300mg, Vioxx 25mg, prilosec 40mg, folic

acid 1mgp, paxial 20 mg, prednisone 5mg ( problems we go to 40mg taper

down to the 5mg)

once a week MTX 15mg

for pain we use darvocet and or hydrocodine ( sometimes they do not help

)

sorry for the long windiness but I thought the more info the better to

help some one or for one to maybe help me I would also like to know if

any one else lives here in Idaho? thank you all for your time and may

you have more pain free times ahead and God bless you all

Marty Gilbertson

[Guest guest]

Well, my husband sits on the fence and we live in Washington. I can't

help but think this is environmental. The more I listen to everyone

here. Could be an infection, which is my old trolls case, so be it.

But Idaho is my nieghbor, and like I have said, Still's is creeping up

around Lake s, Snohomish, WA area.

But now the Rheumy thinks it might be a lurking strep in the old mans

knee? With all the symptoms of Stills. I really wonder.

[Guest guest]

Hi Marty,

Welcome to the Stilligan Island! Sounds like you are having

a rough time of it. My name is Tricia, and I live in central Wisconsin.

I do believe there are about four of us in the group who live in

Wisc. including Tom Kufahl who is the founder of this group.

Well Marty, about your questions. The gut pain thing..is this something

that happens all day, one to three times a day or how often? Have

you told your doctor about it? Have you been tested for an ulcer?

I had severe " gut " pain several years ago, and it was an ulcer. It has

since healed.

Your next question about receiving disability. There is much info on

the internet,also I beleive there is info on our Yahoo group site. You

could try going to www.ssa.gov

I'm getting the questions mixed up, but I'll do my best to answer.

The depression. many of us take something to help cope with the depression

which is a normal thing to get with a disease such as this.

The " wild thing drive. " Yeah Marty, that can happen too. My husband is on

Prozac, and he could answer that question better than I can. You can get

double-whammied here. The disease and medication side effects can lower

a persons " normal " libido. If we married for " just the sex, " we could be in

trouble.

It sounds as if you have a wonderful loving family, and a gem of a wife.

Tell

her to feel free to write to the group if she wants too. Sometimes the mate

needs to talk with someone.

I am sorry you did not get to see your grandmother and father-in-law before

they passed away, but if they knew you were ill, I'm sure they understood.

If not, don't feel guilty, because you could *not* help it.

I hope I helped answer a couple of your questions Marty. Again..Welcome

to this support group. They are a wonderful group who have helped me cope

with this dragon disease many times. They are the best!

Tricia

wega2@...

HELLO TO ALL

> Hi to all I'm what you all call a new be so here's my story or as you

> say intro:

> First I have a learning problem called dyslectic (can't spell worth a

> bean, spell as it sounds so hang in there with me )

> I was told I had OASD and fibermialga in Dec 2000 this was after a

> long time of problems that looking back was over a few year period but

> from Jan 2000 things started to get bad 1st Jan kidney stone then in

> June another kidney stone then July Parricides then Aug. 2000 got up

> from a two hour nap and I was seeing blurred and dubbed now I wear

> glasses then just about lost job from missing to much work ( I'm sure

> none of you know how that is right!) then on Sept. 15th I went on Med.

> leave and have not work from that point but then the doctor visit came

> almost 4 a week they ran every test you could think of as at first they

> thought I mite have cancer but they were not saying it but with the test

> they ran and the internet you did not have to be a rocket sciencest to

> know what was going on then in Oct. 2000 my first over night hospital

> stay and they still had no idea they tested for every thing but to see

> if I was pregnant ( I'm a male but this would have been okay could used

> the money) after I got out both my internal Doctors ,urologist and my

> oncologist suggested that I go some were like the Mayo or Stanford med.

> center we went to Stanford after three Doctors there in just as many

> days they said it was Still's (what is that ? ) will thanks to the

> internet and this group I found out what I got and how to deal with it .

>

> to date I have been hospitalized 3 times 4 days each and countless er

> room visit for gut pain (got to love Demerol and or morphine ) some

> times I go home in hours like 8 if I'm lucky or they have me as a guest

> over night or more.

> I fight pain , and night sweets ( sheet changers) some days just to

> get out of bed is all I can do I try to walk every day (I have become a

> shopaholic!) just to keep every thing moving . the rest I thought I was

> the only one tell I read all your post and well you have all said it

> better then I.

> Now I have Questions for all of you

> 1) any one with extreme upright gut pains ( almost all the time 6-10 on

> scale 1 good -10 bad)

> 2) USA people only any luck or info that may help getting SSDI

> 3) lose of height 5'11'' to 5'9.5''

> 4) lose of the wild thing drive

> 5) problems with depression on and off because of the evil one (Still's)

>

> 6) blood pressure problems both high and low ( think from meds)

> 7) problems using rumacade infusion therapy( head akces , extreme pain

> from 1st day to 14 days out could happen any time but each time I end up

> in the ER or hospitalized then start to feel good for one to two weeks

> then back to normal pain and soreness

> 8) any you can think of ( your turn to work for me and the pay is real

> bad like na da)

> know for what you all really want to know

> Name J. GIlbertson (Marty)

> I live in Boise Idaho USA

> I'm 43 going on 90 (How I feel)

> My wife of 18 years married and 5 engaged is

> Kids two Boy 16 L. Gilbertson (Marty also )

> Girl 11 A. Gilbertson

> two dogs both mixed one pit bull /pointer 12 years

> Visala/German Pointer 2 years

> I no longer work but when I did I drove City bus and Loved it!!!!!!!!!

> used to fish and hunt all the time year round ( to hard and painful so

> no fun now but I can dream right)

> my wife has been the biggest help for me threw all this and has been one

> of the biggest supports helping me do things when I can't and chewing me

> out when I tend to over do it she also try to make sure I get my rest my

> kids are now becoming a help but a first they where afraid . This all

> happened at a hard time in our lives as at the time I got out of the

> hospital the first time the Doctors did not want me more then 50 miles

> from them and at this time My Grandmother and father in-law passed away

> in three weeks of each other and I could not go see them before they

> left us as they lived In Calif. 12 hours by car away ( I'm just up now

> to driving for two max. and a three hour show is just a real pain!)

> Meds I take daily, allopurinol 300mg, Vioxx 25mg, prilosec 40mg, folic

> acid 1mgp, paxial 20 mg, prednisone 5mg ( problems we go to 40mg taper

> down to the 5mg)

> once a week MTX 15mg

> for pain we use darvocet and or hydrocodine ( sometimes they do not help

> )

> sorry for the long windiness but I thought the more info the better to

> help some one or for one to maybe help me I would also like to know if

> any one else lives here in Idaho? thank you all for your time and may

> you have more pain free times ahead and God bless you all

> Marty Gilbertson

>

>

>

[Guest guest]

Sorry if I'm " butting in " , I'm still new to the group and haven't sent my

introduction yet

(I guess I've " lurking " for awhile ;-) ) anyway, this really caught my eye

because when I first got Stills I had a terrible edema in both my legs, the

left though was 100 times worse, none of my doctors thought it had anything

to do with Stills or any of my other problems. But they screwed around with

it and let it go for 2 or 3 weeks and it developed into a 2 inch by 12 inch

long sub-dural hematoma in the middle of my calf muscle (the hematoma in

the right calf was about the size of a plum). They did an MRI on my legs and

saw the hematoma, but thought it was puss and thought it was the infection

causing all of my fevers. Surgery on both my legs got me nothing but alot

more pain and little drainage tubes sticking out (and 6 inch long, 2 inch

wide and 2 inch deep incisions). (I hope this is helping and not just

scaring you to death) I also had the rash and for the first 4 weeks of my

stills onset, my fever was really on again off again (flare really bad for

24 hours, the next two days I would think I was well) Does he have joint

pain leading up to the " flare " ? and then none after? It has now been about 6

months since I got stills and the rheumy (2 of them now, one specializing in

Stills) thinks I " really " have Stills and not just some weird infection.

After the first 4 weeks, my joints stayed at the flare level of pain.

Let me know if any of this sounds familiar, I would really like to help if

possible

Tim Caster

Re: HELLO TO ALL

> Well, my husband sits on the fence and we live in Washington. I can't

> help but think this is environmental. The more I listen to everyone

> here. Could be an infection, which is my old trolls case, so be it.

> But Idaho is my nieghbor, and like I have said, Still's is creeping up

> around Lake s, Snohomish, WA area.

> But now the Rheumy thinks it might be a lurking strep in the old mans

> knee? With all the symptoms of Stills. I really wonder.

>

>

>

[Guest guest]

could be down the same road as my beloved old trout. Stills or staff

infection in the joints. We are so new at this as again, me being a

nurse. I need the info

Nurse ratchett

[Guest guest]

Hey gang. Why so many Stilligans? Is this disease on the up rise?

Steph

[Guest guest]

Hello! I was also wondering about how many people have the disease. . . I don't

know of any around this area. Does anyone know how many people are involved

with the group?

Jen

Re: HELLO TO ALL

Hey gang. Why so many Stilligans? Is this disease on the up rise?

Steph

[Guest guest]

> could be down the same road as my beloved old trout. Stills or staff

> infection in the joints. We are so new at this as again, me being a

> nurse. I need the info

> Nurse ratchett

LOL! Steph, you're priceless. Please don't leave us even *if* it isn't

Stills.....

Angie

[Guest guest]

Well thanks. I will be around, we " Still " don't know. Doctors, well,

they do listen to the nurses ya know. I have helped several in the

education dept.

Do any of you talk to the nurses?

Ratchett on a Roll