Re: Those that are suffering

[Guest guest]

Melt,

Thank you for your kind email on the board today, it really helped

my day along some. I think it must be the time of year because I've

fallen into a bit of depression myself - not understanding my

purpose here since I just go to work and come home. Not married, no

kids, can't volunteer because I can't commit. I wish I could get

into a program or clinical trial for these various meds that we take

so that at least I feel I am contributing in some way to help

someone. I know that it's not always clear why we are here, but it

sure would help with the rest if it were clear.

I know this feeling is compounded by my job which currently consists

of two people - me and my boss. I am interviewing and the right

position will come along soon and it will hopefully help when i am

around more people on a daily basis.

For now the ups and downs come and go for me as it does for everyone

and it helps to know that others have them to. Makes me sad you are

having a bit of depression but at least I know I'm not the only one.

Wishing you a good day,

Houston

[Guest guest]

Hi Family:

I would like to add my two centavos to Mellies? Folks, I

also try to read every e-mail that is sent and I like to think that I do a

pretty good job. Perchance that I do happen to miss one someday please let

me know about it and if it was something for me to do I apologize (like the

Brochures I was supposed to send that time, lol), they finally got sent. For

the board members especially if you would put e-mails from another Board

member or e-mails that apply specifically to you in a separate folder for

you to go back to, it works out real well and you won't have to say " well I

don't remember seeing that one Bob " which I have said myself on occasion. I

don't do that any more as I have the separate folder that I put them in. All

of you can do the same thing and it works quite well! Sorry Mellie I saw a

chance to get a tip or two in here, lol! OK Folks, I'm still selling

Brochures and the price is right FREE! Send me you Name Postal mailing

address with zip code and STATE and I will send you some. Take care now and

be PAIN FREE! Love Ya'll!

" WE WILL WIN "

Love Ya'll

" NEVER FIGHT FAIR "

Carole & Bob

Mom & Dad

Panama City, FL 32404

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

http://www.stillsdisease.org/. Please make Tax Deductible DONATIONS to the

all volunteer, International Stills Disease Foundation Inc., 1123 S. Kimbrel

Ave., Panama City, FL 32404.

There is now a third political party (of the people): The " VPA " , Veterans Party

Of America. Veterans = " Third Class Citizens " .

[Guest guest]

Hi,

I also try to read all the posts it keeps me sane knowing I'm not the only one

with this disease. The heat here in Idaho is HORRIBLE it's supposed to be in the

triple digits for the next week so I will be spending a lot of time inside.

I am a bit depressed too & easily set into tears. Last night my daughter

called me at 2:30am she was staying with a friend & had got a text message from

boys she knows to look outside. She said she wasn't here so they told her they

had toilet papered our house. She was upset & called for me to go out & look

when I saw how bad it was I lost it I started crying. They had come onto my

front porch where I have a little lemon tree my grandma that passed away had

given me this is the first year it's actually had lemons. They had wrapped TP

around it & knocked off a bunch of the baby lemons also went into my flower bed

& crushed some of my flowers. My yard & driveway were covered & our trees. In

one there is a bird house that has babies in it. I told my daughter the boys

better get their asses over here & get it cleaned up or I would call parents! I

stated cleaning some of it up. At 2:30am I'm out in my yard in my crying in my

pj's!!! I'm sure if any of my neighbors saw me they

know I really am crazy! The boys did come back & cleaned up most of it. I was

decent to them while they were here but watched them (in my pj's). We will have

to get a ladder to get some of it out in the tree it's so high up. I could just

leave it until Christmas then I wouldn't need to decorate it would have some

color to it by then! It appears the baby birds are OK. When I got up this

morning there was a dozen roses on my porch with a note card from the boys

saying how sorry they were-- which was sweet. Before I got ill I probably would

have been mad then laughed it off but I guess now I get overwhelmed easy & can't

handle things.

The Dr. did start me on anti-depressants but I hate the thought of taking

" another " med. At this point he is planning to try & get me on long term

disability since my short term is about up & there is no way I'm ready to go

back to work. My meds have been changed every month since I got sick. This last

week is the first time my blood work has been close to normal but I sure don't

feel like it is! I don't think my employer is going to be real receptive to

this! They want me to see their Dr. for a 2nd opinion & 90% of the time he sides

with the company. They have a book with industry standards for diseases people

have & what they are capable of work wise to help with their decisions. I have a

feeling Stills isn't going to be in there, what do you all think?

When I called my employer last week I had to talk to the occupational Nurse

who handles short & long term cases. She made me feel like she thinks I'm

faking. She said " oh my looks like you've been a sick girl " then a little

chuckle? She said she was just getting ready to send letters to my doctors to

see what they had in mind for a return date & that IF I were to go on long term

then at some point get better my current job would not be available & I would be

placed " someplace " else as a temporary until they could find a job for me. Like

I want to go on disability & be sick? On top of it have my pay check reduced to

60%! It's already been reduced to 75% & we are barely making it! It just adds

more stress & I'm already a basket case! I guess when I do see their Dr. I'll

have plenty of tears for him! I'm just really worried about it. What if I'm

having a " good " day when I go in? Has anyone else had to do this?

Anyway I didn't mean to ramble on & on. I'm just down in the dumps & really

don't want to deal with all this crap!!!

Take Care,

Chris

mellymelt wrote:

Hi all;

In between my tasks each day I save many emails to answer and then don't get

that done. I just wanted to say I read every single one and think of you all

with love in my heart and wishes that our health can be better. Please remember

some of the best medicine doesn't come with a perscription or at the doctors but

all by ourselves we need rest and then when you think you have had enough have

some more.

I know the extreme heat this summer is getting to me and it's very hard to be

peaceful but we can try. One of our long time members, Tricia sends her love to

all her friends here. She has been in too much pain to sit at the computer for a

year or so now but thinks of us all with love. There are quite a few members out

there we haven't heard from in a long time. If your reading it would be nice to

have a heads up about yourselves whether doing good or bad.

Well, I'm feeling better on the 15mg of methotrexate each week but having

problems with mouth sores so will have to figure out something to do about it

with my doctor. He did mention to me taking Arava so we shall see soon if he

switches meds. I'm also having a bit of depression but working with it by

keeping busy with the t-shirts, conference plans and other foundation work.

Heck, I am dreaming about Christmas so maybe it's time to get out my needlework

and start some projects for the holidays. Couldn't hurt. So far, this summer I

have been sewing pj's for all my girlfriends.

Thanks for listening if you've gotten this far. I love you all lots,

Till soon,

[Guest guest]

Must be getting same weather as us in Alberta,only double digits here but

Celcius lol Its Hot,at least its not humid and sticky like it was.Are you close

to Idaho border were probally closer than you think eh!!Im glad those young guys

made up for the prank a little with the Roses im sure your Daughter probally let

them have IT!! Hope your lemon tree survives and bears fruit lemons a fruit

right? Take care. d.Canada---- Original Message -----

From: Heavin

To: Stillsdisease

Sent: Thursday, July 20, 2006 12:34 PM

Subject: Re: Those that are suffering

Hi,

I also try to read all the posts it keeps me sane knowing I'm not the only one

with this disease. The heat here in Idaho is HORRIBLE it's supposed to be in the

triple digits for the next week so I will be spending a lot of time inside.

I am a bit depressed too & easily set into tears. Last night my daughter

called me at 2:30am she was staying with a friend & had got a text message from

boys she knows to look outside. She said she wasn't here so they told her they

had toilet papered our house. She was upset & called for me to go out & look

when I saw how bad it was I lost it I started crying. They had come onto my

front porch where I have a little lemon tree my grandma that passed away had

given me this is the first year it's actually had lemons. They had wrapped TP

around it & knocked off a bunch of the baby lemons also went into my flower bed

& crushed some of my flowers. My yard & driveway were covered & our trees. In

one there is a bird house that has babies in it. I told my daughter the boys

better get their asses over here & get it cleaned up or I would call parents! I

stated cleaning some of it up. At 2:30am I'm out in my yard in my crying in my

pj's!!! I'm sure if any of my neighbors saw me they

know I really am crazy! The boys did come back & cleaned up most of it. I was

decent to them while they were here but watched them (in my pj's). We will have

to get a ladder to get some of it out in the tree it's so high up. I could just

leave it until Christmas then I wouldn't need to decorate it would have some

color to it by then! It appears the baby birds are OK. When I got up this

morning there was a dozen roses on my porch with a note card from the boys

saying how sorry they were-- which was sweet. Before I got ill I probably would

have been mad then laughed it off but I guess now I get overwhelmed easy & can't

handle things.

The Dr. did start me on anti-depressants but I hate the thought of taking

" another " med. At this point he is planning to try & get me on long term

disability since my short term is about up & there is no way I'm ready to go

back to work. My meds have been changed every month since I got sick. This last

week is the first time my blood work has been close to normal but I sure don't

feel like it is! I don't think my employer is going to be real receptive to

this! They want me to see their Dr. for a 2nd opinion & 90% of the time he sides

with the company. They have a book with industry standards for diseases people

have & what they are capable of work wise to help with their decisions. I have a

feeling Stills isn't going to be in there, what do you all think?

When I called my employer last week I had to talk to the occupational Nurse

who handles short & long term cases. She made me feel like she thinks I'm

faking. She said " oh my looks like you've been a sick girl " then a little

chuckle? She said she was just getting ready to send letters to my doctors to

see what they had in mind for a return date & that IF I were to go on long term

then at some point get better my current job would not be available & I would be

placed " someplace " else as a temporary until they could find a job for me. Like

I want to go on disability & be sick? On top of it have my pay check reduced to

60%! It's already been reduced to 75% & we are barely making it! It just adds

more stress & I'm already a basket case! I guess when I do see their Dr. I'll

have plenty of tears for him! I'm just really worried about it. What if I'm

having a " good " day when I go in? Has anyone else had to do this?

Anyway I didn't mean to ramble on & on. I'm just down in the dumps & really

don't want to deal with all this crap!!!

Take Care,

Chris

mellymelt wrote:

Hi all;

In between my tasks each day I save many emails to answer and then don't get

that done. I just wanted to say I read every single one and think of you all

with love in my heart and wishes that our health can be better. Please remember

some of the best medicine doesn't come with a perscription or at the doctors but

all by ourselves we need rest and then when you think you have had enough have

some more.

I know the extreme heat this summer is getting to me and it's very hard to be

peaceful but we can try. One of our long time members, Tricia sends her love to

all her friends here. She has been in too much pain to sit at the computer for a

year or so now but thinks of us all with love. There are quite a few members out

there we haven't heard from in a long time. If your reading it would be nice to

have a heads up about yourselves whether doing good or bad.

Well, I'm feeling better on the 15mg of methotrexate each week but having

problems with mouth sores so will have to figure out something to do about it

with my doctor. He did mention to me taking Arava so we shall see soon if he

switches meds. I'm also having a bit of depression but working with it by

keeping busy with the t-shirts, conference plans and other foundation work.

Heck, I am dreaming about Christmas so maybe it's time to get out my needlework

and start some projects for the holidays. Couldn't hurt. So far, this summer I

have been sewing pj's for all my girlfriends.

Thanks for listening if you've gotten this far. I love you all lots,

Till soon,

[Guest guest]

I know what you mean about the little things setting you off now. It

can be humorous. It was so sweet for the boys to bring you roses.

Regarding disability, I don't know a lot about employer disability,

fortunately I've not had to go that route - yet. However, I would

make sure that you have researched all the legalities adn what they

are/aren't entitled to. Make sure you know your plan backwards and

forwards. If you must see their doctor, are you able counter with

another opinion, etc, etc, etc.

Are you planning on applying for federal disability as well?

Houston

[Guest guest]

that is mean of those boys with the TP. What is wrong with people! I

am loosing my personality when I am well. I do get remissions tho and I hope

for you the longest remission ever! Liz NJ

[Guest guest]

I am in Boise, ID which is right about in the middle of Idaho. It's not humid

just plain HOT!!!!!! My brother & sister in law live in Salmon Arm, BC she is

Canadian. They own a Marina there boy would I love to be there right now in the

lake! Yes I do believe lemons are considered a fruit & there are still some on

it

Yes I do think my daughter had a few words with those boys one thing I can say

about her is she stands up for herself & her family! Teenagers couldn't pay me

to be there again!

Take Care,

Chris

Docken wrote:

Must be getting same weather as us in Alberta,only double digits here

but Celcius lol Its Hot,at least its not humid and sticky like it was.Are you

close to Idaho border were probally closer than you think eh!!Im glad those

young guys made up for the prank a little with the Roses im sure your Daughter

probally let them have IT!! Hope your lemon tree survives and bears fruit lemons

a fruit right? Take care. d.Canada---- Original Message -----

From: Heavin

To: Stillsdisease

Sent: Thursday, July 20, 2006 12:34 PM

Subject: Re: Those that are suffering

Hi,

I also try to read all the posts it keeps me sane knowing I'm not the only one

with this disease. The heat here in Idaho is HORRIBLE it's supposed to be in the

triple digits for the next week so I will be spending a lot of time inside.

I am a bit depressed too & easily set into tears. Last night my daughter called

me at 2:30am she was staying with a friend & had got a text message from boys

she knows to look outside. She said she wasn't here so they told her they had

toilet papered our house. She was upset & called for me to go out & look when I

saw how bad it was I lost it I started crying. They had come onto my front porch

where I have a little lemon tree my grandma that passed away had given me this

is the first year it's actually had lemons. They had wrapped TP around it &

knocked off a bunch of the baby lemons also went into my flower bed & crushed

some of my flowers. My yard & driveway were covered & our trees. In one there is

a bird house that has babies in it. I told my daughter the boys better get their

asses over here & get it cleaned up or I would call parents! I stated cleaning

some of it up. At 2:30am I'm out in my yard in my crying in my pj's!!! I'm sure

if any of my neighbors saw me they

know I really am crazy! The boys did come back & cleaned up most of it. I was

decent to them while they were here but watched them (in my pj's). We will have

to get a ladder to get some of it out in the tree it's so high up. I could just

leave it until Christmas then I wouldn't need to decorate it would have some

color to it by then! It appears the baby birds are OK. When I got up this

morning there was a dozen roses on my porch with a note card from the boys

saying how sorry they were-- which was sweet. Before I got ill I probably would

have been mad then laughed it off but I guess now I get overwhelmed easy & can't

handle things.

The Dr. did start me on anti-depressants but I hate the thought of taking

" another " med. At this point he is planning to try & get me on long term

disability since my short term is about up & there is no way I'm ready to go

back to work. My meds have been changed every month since I got sick. This last

week is the first time my blood work has been close to normal but I sure don't

feel like it is! I don't think my employer is going to be real receptive to

this! They want me to see their Dr. for a 2nd opinion & 90% of the time he sides

with the company. They have a book with industry standards for diseases people

have & what they are capable of work wise to help with their decisions. I have a

feeling Stills isn't going to be in there, what do you all think?

When I called my employer last week I had to talk to the occupational Nurse who

handles short & long term cases. She made me feel like she thinks I'm faking.

She said " oh my looks like you've been a sick girl " then a little chuckle? She

said she was just getting ready to send letters to my doctors to see what they

had in mind for a return date & that IF I were to go on long term then at some

point get better my current job would not be available & I would be placed

" someplace " else as a temporary until they could find a job for me. Like I want

to go on disability & be sick? On top of it have my pay check reduced to 60%!

It's already been reduced to 75% & we are barely making it! It just adds more

stress & I'm already a basket case! I guess when I do see their Dr. I'll have

plenty of tears for him! I'm just really worried about it. What if I'm having a

" good " day when I go in? Has anyone else had to do this?

Anyway I didn't mean to ramble on & on. I'm just down in the dumps & really

don't want to deal with all this crap!!!

Take Care,

Chris

mellymelt wrote:

Hi all;

In between my tasks each day I save many emails to answer and then don't get

that done. I just wanted to say I read every single one and think of you all

with love in my heart and wishes that our health can be better. Please remember

some of the best medicine doesn't come with a perscription or at the doctors but

all by ourselves we need rest and then when you think you have had enough have

some more.

I know the extreme heat this summer is getting to me and it's very hard to be

peaceful but we can try. One of our long time members, Tricia sends her love to

all her friends here. She has been in too much pain to sit at the computer for a

year or so now but thinks of us all with love. There are quite a few members out

there we haven't heard from in a long time. If your reading it would be nice to

have a heads up about yourselves whether doing good or bad.

Well, I'm feeling better on the 15mg of methotrexate each week but having

problems with mouth sores so will have to figure out something to do about it

with my doctor. He did mention to me taking Arava so we shall see soon if he

switches meds. I'm also having a bit of depression but working with it by

keeping busy with the t-shirts, conference plans and other foundation work.

Heck, I am dreaming about Christmas so maybe it's time to get out my needlework

and start some projects for the holidays. Couldn't hurt. So far, this summer I

have been sewing pj's for all my girlfriends.

Thanks for listening if you've gotten this far. I love you all lots,

Till soon,

[Guest guest]

Hi and Everyone....Thank you for asking how some of us have been that

hadn't posted lately. I have been in a flare for the past two months; fevers,

chills, mouth sores, sore throat, anemia; all on-and-off. Each day was a new

sympton or not. I've had the awful pink rash from my neck to my feet. Once

in-awhile it itches. To compound things, I also was diagnosed with Morphea.

It's tightening and hardening of the skin and painful to the touch. I have it

on my ankles, legs and arms. It gets to be very painful at times when I walk

too much (just normal walking to the car, during work, etc). I have been on 8

mgs of MTX each week since 2004; now my rheumy is suggesting shots of Kineret.

I start those later next week. I am taking photolight treatments for my

Morphea. I am getting doses of UVA rays for 12 mins. 3 x's a week. This

treatment is given in Germany (where it was started) and 5 universities in the

U.S. Lucky for me, UT Southwestern in Dallas, TX is one

of them. Minimum treatments last four months and can go on for a year or so.

I appreciate everyone posting. I do read at least every week or so. ,

hope you find relief for your mouthsores. I get those, too and usually just

suffer with them.

God Bless Everyone and hope you are handling your flares. That's all we can

do is handle them so the Dragon doesn't handle us.

To the wives/spouses of Stilligans, I am also on antidepressants which have

helped me through the years of Stills (since 2003). I cannot live without them.

Hugs,

Diane/Dallas, TX