Re: Venting and ?'s ..... (long)

[Guest guest]

Hi, I LOVED your post.....Every word of it..........You've said everything

that I'm feeling almost everyday. Yes, some days are better, but great. I

want my old life back.

My father died in Jan of throat cancer and I'm seeing a counselor through

work and I'm reading this book called THE GRIEF RECOVERY HANDBOOK. It talks

about all types of loss.........Anyway, I'm not selling you on the book. But

one of my assignments for the next two days is to make a " loss graph " of my

life...........I'm scared to do it because I know that my Still's is going to

be such a huge part of the graph. You're so right, ppl just dont get it do

they? If you dont have it, you wont understand what we're going through. I

hate not being able to plan anything because I never know how I'm going to

feel. Relationships are almost impossible and now I'm grieving the loss of a

great father alone too.......

I've been working way to much at the hospital and my hands are screaming

right now even as I type. My palms peel at times, but no blisters.......the

redness is incredible. My sister comment on how I'm always rubbing my wrist

and

hands....I guess it's a subconscience thing now.....I doubt if I've been

much help to you. But please know that we are out here for you.....Vent all

you

want......I'll listen I have nothing else to do tonight.....

Beth G

Houston

[Guest guest]

Dear Shica;

After reading your letter, anything I can think of to say seems so trivialized.

I do believe we have all know such desolation that this disease seems to bring

with it. What have I done in the years to cope? At times I do reach out and

say those words to the medical professionals I see. I say " I need help " and if

they don't listen then talk to someone else until the right person gives you the

help you need.

I just want to say thank you for writing to us because even if we cannot fix it

we can say we understand how bad it can get. Please don't stay quiet.

Melt

----- Original Message -----

Each day that passes I become more and more hopeless.

I've lost so much of my life and so much of who I am that I might as well be

dead already.

I've kept a smile for two years, it'll get better...this too will

pass....everything for

a reason...IT HASN'T PASSED.

[Guest guest]

Shica,

I'm so glad you vented. I think that all of us have felt this way.

As far back as I can remember, wherever I've lived and worked and

socialized, people just spontaneously called me by the

nickname " sunshine " because I was always such an upbeat and

energetic

person. In the last year, since this thing started, I haven't had a

single day of being sunny. Instead, I've often had the same

feelings

that you expressed. I've thought about driving off of bridges,

OD'ing

on pain meds, drinking a bottle of Jack s and wandering into

the

woods on a frigid night... why live if you can't live your life? I

did see a shrink this past fall, a psychologist who specializes in

chronic pain management, but since her advice basically boiled down

to " you need to rethink how you do things " (eg. " you can still go to

the Fryeburg Fair but maybe you'll need to do it in a wheelchair " ),

I

stopped seeing her. Plus, like you, I felt that I had to put on a

good show, not complain so much, not whine so much... isn't that

crazy? I'm paying someone to LISTEN to me whine and I feel

compelled

not to???

I don't know if I have the best answer for you, but something I've

recently tried that's kind of working is letting people know just

how

bad this is and falling apart when I need to. This past month has

been pretty bad--and when my coworkers have said to me, " gee, you're

looking a little stressed and tired, " I've just burst into tears.

Not

very professional, but screw it. I'm now taking some time to

explain

that despite the nasty f% & $ing drug cocktail that is making my hair

fall out, making me fatter, giving me facial hair and pimples,

despite

having to inject crap into myself that burns and itches and leaves

big

bruises, despite watching the few remaining years I have left to try

to have a baby disappear, despite all of this I'm STILL having

flares

and feeling awful and there really isn't much more that I can do

except try another nasty drug or pray for a miracle cure. After

having spit all that out, I usually say, " I'm really just trying to

avoid having a complete mental breakdown every day. Anything else

is a

bonus. " That usually gets me laughing again.

If you aren't working even part time, I would definitely try to,

even

if you just sign up for some volunteer work. While staying at home

is

great for getting enough rest and nursing your poor body, getting

out,

at least for me, is much better psychologically. I don't feel quite

so isolated... I don't spend quite as much time stewing about the

crappy hand I've been dealt.

Hope that helps in some way...

in Maine

>

> Each day that passes I become more and more hopeless.

>

> I've lost so much of my life and so much of who I am that I might

as

well be

> dead already.

>

[Guest guest]

Sorry--forgot to add that when people ask me what it's like, I

say, " It's like having the flu, strep throat, poison ivy (my rash

itches), and sprained ankles, wrists, knees, hands, and fingers all at

once. "

[Guest guest]

Shica, Shica, Shica.....Reading your post, I was sitting here going uh-

huh, yes, right, etc.... It's difficult, I mean REALLY down & dirty

difficult to keep anything even vaguely resembling a postive attitude

with this disease sometimes....ok. lots of times. I do try, and I can

only speak for myself, once I get sort of derailed mentally, I feel

like I really hit the slippery slope & fall off the face of the

earth. I've been going through that over the past month & feel like

I'm kind of coming out of it now. I'm just glad we can all get

together in here & if nothing else, WE all understand. Don't

apologize for the long post - sometimes there's a lot to say.

Barbara in Houston

>

> Each day that passes I become more and more hopeless.

>

[Guest guest]

*Shina,*

*Please don't feel about your post or the length of it. It seems to me that

you needed to get this out. We all feel this way and we all need times to

let it all out.*

**

*As for ppl who we want to understand this DD or any other auto immune

disease here is a great site to read--make copies. I did. And share this

with others.*

*http://www.butyoudontlooksick.com/the_spoon_theory/*

**

*As for all the other things--well, it is the grief we must go through.*

*I know how hard it is and I know how lonely I would be if I did not have my

beliefs. I suggest that you try reaching out to some volunteer work--make

sure that you have flexible hours or you may not be able to follow through

with the work. In other words, you need an activity that you can put first

rather than sit and thinking about how much you have lost and how much you

are suffering. There is much happiness when we give of ourselves--even when

we are sick.*

**

*When I am greeted with " Hi. How are you? " My response is this. " I am here

and that is all I can ask for at this time. Thank you for asking. " You are

not saying " I am fine " rather you are letting the other person know that you

aren't feeling " normal " at the moment but you are hopeful that one day you

will be.*

**

*No one asks to be sick or have arthritis. It just happens in this world. We

can be victims or we can do our best to be survivors. I have been fighting

this since I was 3 but I was diagnosed when I was 12, and it has been a

battle all the way. I can say this and be truthful. I have two small boys

but I have paid the cost to have these beautiful creatures in my life--which

are true gifts from above. I love them both so dearly and I thank the higher

authority for such a wonderful blessing but I wonder what my health would be

if I hadn't had children. I love them and I would never change a thing but I

can't help but wonder. And I live in fear that one or both may show auto

immune one day since they come from two families that have a history with

these diseases. So, maybe it's OK if you choose your meds over starting a

family. I believe it's all personal choice.*

**

*And please post more. It sounds like you need to be here with us who

understand so much more than you realize. Together we can be one voice in

telling ppl how it is to live with Still's and related diseases.*

**

*Hang in there. You are never alone.*

**

* in Oregon*

>

> Each day that passes I become more and more hopeless.

>

> I've lost so much of my life and so much of who I am that I might as well

> be

> dead already.

>

> Well, avoiding the reality of my need for this outlet certainly hasn't

> gotten me anything but compounded sadness....so I'm gonna try to change

> this about me. Thanks again...... xoxo Shica

>

>

>

>

>

>

>

> 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]

,

The spoon theory story is awesome. Lynn forwarded it to me a few

months back & it really makes you stop & think - at least it did

me. It was such a simple way to explain a very complicated thing.

Regarding the " how are you? " response....I will frequently say, " oh,

about a C+ " (or whatever " grade " I happen to be at the time).

During the Olympics, it would be the scoring system.. " I'm 4.5,

thanks for asking " . Something to get the point across while

maintaining a sense of humor. A wacky sense of humor really helps

get through this thing called Stills.

Barbara in Houston

>

> *Shina,*

> *Please don't feel about your post or the length of it. It seems

to me that

> you needed to get this out. We all feel this way and we all need

times to

> let it all out.*

>

> **

> *As for ppl who we want to understand this DD or any other auto

immune

> disease here is a great site to read--make copies. I did. And

share this

> with others.*

>

> *http://www.butyoudontlooksick.com/the_spoon_theory/*

[Guest guest]

Please please do not beat yourself up,we all know what you are dealing with.I

have had this disease for at least 15 years and the early ones were the worst.I

could fall asleep if i took aspirin huh that was some time ago!i did learn

something about pain meds in this long difficult process,take the meds on a

regular basis,like every 3 or 4 hours so that you don't get so much pain that it

takes forever to feel the effects of it.My rheumy only has one patient with

stills,ME but when he saw me in a flare he got it.Has your Dr. got the addy for

the Stills site?You might ask him or her to go to the site and realize what you

are dealing with.As for people understanding this thing we live with,it takes a

while for them to slightly understand and even longer before they get it.Don't

be afraid to tell them what you are feeling,you don't need to whine to them or

anything,that just makes some people shut down,but they need a clear

understanding of your daily symptoms.I dond't know your age,but you might try a

specialist in problem pregnancies or a geneologist who would be familiar with

the meds you take.My doc says you aren't addicted if you really need the drug

you take,only if you don't need it.I see the logic in this,but I know we all

feel like addicts at times because we have to take so much medication.I too get

the blister,but usually only on my fingers.I always blame everything on

prednisone because I've been on it for years.If I try to go below 5mg I flare,so

G*d only knows how long I will be on it.I also get the very red skin on my

wrists and hands and I also have fibromyalgia,so I tend to think they are

connected and I don't know which one causes it.I am so sorry for you and I know

the road seems impossibly long until you get some good days,but we are all here

for you and will be whenever you need to vent no matter how long you talk.Don't

give up things will improve.

love elly

[Guest guest]

Dear Shica,

You can vent anytime you want.

Unfortunately to try and get on in life there is a level of ignoring the truth

of this disease, of ignoring the meds we're on, and putting on a " happy " or

normal front. This doesn't solve the problems but it is a coping skill.

At the beginning antidepressants are helpful because let's face it, there's no

getting out of your own body to get away from Stills.

I really don't think that Still's happens for a reason- it's just a random

unfortunate event and there is no rationalizing it after the fact. I don't

think I did anything to deserve this, I don't think God only gives me what I can

handle, and I don't think after 3 years + that Stills will go away. The old you

does die, but then there is much work to be done to build the post Stills you,

because so long as you're breathing your life is not over. But oh boy, is it a

different life.

There is hope that this disease hasn't completely taken over your life if you

have the gutts to stand up to this idiotic doctor who wants to talk to you about

diabetes. And to fire the psychologist who thinks that a support group for any

disease will help. I remember how before diagnosis a psychiatric nurse told me

that they may never find a dx for this and that I had to learn to accept that. I

never went back. What's the point of fighting this if you give up on getting any

answers?

Taking a stand against ignorant medical professionals is difficult but

empowering and shows me that you haven't completely given up.

The description of the rash that you gave is concerning to me because it's not

really consistent with Still's. You should have this biopsied by a

dermatologist. Maybe it's nothing but it's better to be sure, because it almost

sounds like a vasculitic rash. Vasculitis is an inflammation of the blood

vessels that can happen with Stills and it's a concern because it means that

your disease is not under control. Just my 2 cents.

-beth

[Guest guest]

Shica,

I forgot to mention last night that I have the same issue with the

swelling & bright red palms - looks like I've been clapping my

hands. In addition, this happens on the balls of my feet - yeowy.

Sometimes I'll have tiny little blistery looking things, but no

peeling.

Barbara in Houston

--- In Stillsdisease , " ufc_lovah "

My hands swell,(just my palms and inner

> wrists, but it's not like fluid retention, the flesh becomes so

inflamed and

> stretches out to it's limits, turns very hot and BRIGHT RED, like

I had soaked

> them in Cherry KoolAid. Then my skin will start breaking and

peeling horribly.

> The only thing that stops it is pred. Do any of you get this or

something

> similar? xoxo Shica

>