Re: Pacing yourself

February 27, 2011

Hi everyone,

, I wanted to thank you for taking the time to explain how you plan your day

and for sharing tips about pacing. I went " downhill " again about a month ago

now and my rheumatologist increased my steroids and added Plaquenil to my MTX

and pain killers (not having fun with the side effects of Plaquenil but pain is

definitely significantly less now). I'm not sure what sparked all this except

that I wasn't pacing myself and I need to learn how to do that. The problem is

that if I am feeling ok, I go into overdrive and try and do everything to get it

done or go full steam ahead for the pleasure of being able to do something; I am

so relieved at being able to do something. BTW by that I mean actually go to

the shops, pay the bills, or actually take the dog to the beach as opposed to

his usual track walks LOL. But if I am not feeling ok and can't do things, I

get very low but also very panicky about the present and the future. I know

that these psychological swings are not helping at all. I wonder how other

people organize their day to accommodate pacing and also to avoid the lows? What

activities do you incorporate to stave off the feeling of hopelessness? I would

be really grateful if anyone has any advice...playing chess against the computer

is getting very old LOL.

Thank you for listening,

Love

Francesca

To: Stillsdisease

From: proangler56@...

Date: Sat, 26 Feb 2011 15:21:51 -0800

Subject: Re: Debbie-I am new!/

Debbie I wish you were not here on this site. Not here Not sick. Some of the

things I do to keep rested is to plan. I get what I am going to wear the next

day out in the evening and put them in the bathroom. I do things ahead of time

so I can get ahead of the Stills unknown affect for the day or the next day. I

drink Tea, so I have my tea cup and spoon ready

and have my breakfast bowel and spoon also ready. So that being said I have a

shower and if I don't feel good, right there are my clothes, and when I go to

have my breakfast it is half done already. That made a easy morning. Proangler

GARY proangler56@... Need to talk let me know..........OK

________________________________

To: Stillsdisease

Sent: Fri, February 25, 2011 9:14:05 PM

Subject: Re: Debbie-I am new!/

,

You brought tears to my eyes! You get it and it is hard for me to find anyone

who does. I have always been a faith driven, loving, outgoing, and giving

person. It is hard to need when you have always been the " giver " . I believed

in the institute of marriage, I believed I could " fix " my husband. Through all

of this journey, I have learned that my identity truly begins with how I choose

to view myself. Now, I am with my highschool sweetheart who has so much going

for him and all I can think of (in the back of my mind) is how I am bringing him

down. I push and push but there are more days lately than not that I physically

cannot " go " . People see me and it's " she doesn't look sick " . Lately it has been

that many feel I am being " lazy " , and I am not. I do love me very much but I

cannot introduce anyone in my life to the invisible monster that comes and

goes. Currently I am undergoing high doses of steroids and it seems so

defeating. I

work in between treatments to be skinny and then boom here comes fun! I am

learning to heal from so much and know that it will be a process. I believe we

experience the grieving process through all of this yet, I am angry that I feel

like there are so many who don't deserve it. When the Doctor asked how I deal

with the " pitty me " moments...I told him " God never gives us more than we can

handle but I think those of us that are ill may have been overdosed lol!! " I do

know that we are special in the way that I believe you must be strong and bull

headed to deal with this...and that part of me can never be taken away. I also

try to still find ways to be the giver, some days more than others. At 34 I had

plans with my carreer and goals financially....I will never forget my plans ...

they just have to wait. I just try not to go there. You all are amazing and I

am thankful already that I finally threw my pole in the water!

Deb

Subject: Re: Debbie-I am new!

To: Stillsdisease

Date: Friday, February 25, 2011, 1:04 PM

Dear Debbie; I just read you post in my e-mail. I to had a few tears for you as

I read . You are now going down a road that you did not choose to go down. You

do not need that Man ,well I would not call him a man he is a child. I to got a

divorce 5 years ago and got Stills 3 years ago. It has been hell for me but we

all have differant systoms with it. It is your time to reast , take care of the

kids (don't know how many ) and look at life in a differant prospective. I was

very outgoing and always having fun. All of a sudden BAM the Monster got me. It

was bad and been in hosp. 4 times in 3 years. I had to convince myself that I

was sick and could not do the things I loved to do. Age 58 Male. Retired

,single, have a nice home and truck. I have no finacial worries. I am Sick and

if I am haveing a good day I want to do something and I tell myself , you can't

do that. I guess we just have to accept the road we are on and live life Hour by

Hour and Day by Day. That is all we can do. This is not a quick fix illness it

keeps us down.

Sooo many systoms with Stills we never know how the next day will be. Today I

am doing better than yesterday. You keep your head up and look to God for his

help. It is hard to accept, but once you accept that you are not the same person

and you are going down a road that you never wanted to, you accept your life,

and when you can do that your attitude will change. I hope you will have a good

hour or day and this is the place to tell all that is on your mind. If Stills is

keeping you from doing something and you need help finding out the answer or how

to do a task with Stills just ask here and someone will help you along the way.

The people on this site have been there and done that. We are a rear breed and

need support .

So just write down your questions and you will get answers here ......OK

Proangler

GARY

________________________________

To: stillsdisease

Sent: Thu, February 24, 2011 9:06:44 PM

Subject: Debbie-I am new!

Well Hi Everyone!

Writing you all has taken me six months....I have chosen to be the annoying

person who " lurks " I suppose. More scared than anything because of how this

illness came to a head. I am a mommy of well it was 4 boys but I have one

biological son who is ten. I can say I have been through a lot as I know most

of you have as well. I came from an abusive relationship and used to think that

if my husband was the worst of my issues I could handle it. I learned quickly

that when it would come to fighting for my life, my son and my life were more

important to me than anything.

Started with a diagnosis of fibromyalgia and little to no help! Year later it

would be Lupus with again little to no help! I am sure most of you get this.

Then the fever caught the attention of an emergency room physician whom noticed

high inflamitory levels, something in the heart lining, lung imflamation among a

few other issues. Long story short, an awesome rhematologist in Seattle, Wa hit

me with AOSD! I am learning as I go but still afraid of whatever it is! With

that I mean that it is truly hard to accept a diagnosis when in a ten year

period its gone all over the map! At 34 I am on disability which I am greatful

for an income...and, I try to stay as posiitive as possible. I am going through

divorce now and have been away from the abuse for over a year now. If anything,

the disease saved me really! It's presence and pain pushed me to fight for

myself in a way I truly never thought I could yet lately I am trying but I

realized I

could really benefit from the company of others whom understand.

I am the one whom is always " fine " ....don't have to go to the Dr.s yet, I will

go if it gets worse, I just need to rest...so on so fourth. I focus on being a

mom but put way to much pressure on myself to be like " everyone else " . I don't

know if any of you can agree with this but I feel like through this process I

gain strength but also I lose bits and pieces of the " me " I am so used to. I

would compare it to " shedding " almost lol, it's like a dog...the shedding is a

pain to clean up and can drive you insain but everytime whether it is a lighter

or darker fur that comes in, you find an appreciation for it. I try not to go

there with the " who I was " or " what I could do " , I try to find something that

still keeps me going no matter what it is. Lately it is getting harder, the

pain is at an ultimate high and the " new " med is making me feel just plain

nasty.

My leaving the previous relationship has not been easy. My ex has broken the

restraining order on more than 30 documented and called in occasions but there

were some " clerical errors " that kept the police from prosecuting. He has now

filed for full custody and though I know he will never obtain it, the things he

has put in his statement hurt so badly. It is almost as if I accept that I have

AOSD than it means I am all of those things. At the point I was diagnosed, my

ex went out to the waiting area to inform my family of my condition...I was not

fully aware yet as I was truly so close to death it is scary. He literally said

what was wrong and then stated " I didn't ask for a sick wife, I don't even need

one " , and within the two days time that I was in the hospital he had already

found a new love and had moved on. For some reason, I have been afraid to even

discuss the disorder with anyone. The court papers state that I " take a lot of

meds " ,

that " it is unclear I will be around for my son " and that " though the father has

anger issues he can still offer stability health wise " .

It is sick to me that my disability can be used against me, it makes me want to

scream sometime. I do have to admit that though I have passed tears while

writing this, I do feel a sense of relief from sharing. I hope I didn't dump to

much on anyone-yet, I thank you for reading and taking the time to listen.

I also apologize for " lurking " but, everyone is different and I am glad I took

the time tonight to jump in. I pray for you all nightly and thank you for

letting me vent. I am here in Washington and would love to help or chat with

anyone when they need someone as well. I am still trying to understand exactly

how this works and would love to do the live chat but really haven't figured out

how to.

Thanks and God Bless you all,

Debbie

February 27, 2011

Francesca

I can tell ya what I do I look for was to make my wife's day and to always

remind her that it was her that said I do only she did not know what she was

saying it to. no what I really do is I have a set pattern for a few things such

as e mail checking the news on line and things like that ( I am a on line junky

any more a redneck on the Internet kind of guy LOL. then I get any cores that

have to be done if I am up to it and after that if I have any thing left I try

to get some extra things done. now every now and then things get messed up such

as a car or truck break down that I have to force my self to fix up to it or not

but then I rest after that. now on bad days I just do simple easy thing and that

is mostly my computer stuff including picking at this dang book I have been

working on for over a year now and I still have very little done as I am still

researching info for it but that is hard now as all my dads old ship mates are

gone now. any hoot I do a lot of puttering and before I know it I have done

almost nothing and the day is gone but I have wrote a lot on the computer be it

here or on other sights ( mostly political) and or researching to keep the old

gray matter working and time just gets way from me like now I started for bed

over 4 hours ago LOL but here I sit and it is now 4 am so I better scram and get

some sleep or the day will be gone before I wake up

hugs

The Redneck

Marty G

" I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

To learn more about Stills Disease or to make a tax deductible donation:

http://www.stillsdisease.org/stills_info

February 27, 2011

Hi There Fran; The emotional swings for me are at a daily level for some time

now. I get very emotional for no reason and I was never like that. I am a man

who has always had my heart on my sleeve. I like to think I am a very kind and

caring person. But the swings are daily and I really can't control them. I am on

med's for depression but they do not work. I spend alot of my time on the couch

watching TV. I have found that If I watch TV and look for showes that I watched

in the past it will keep my mind focused on the TV show. For example I watch

news on cable alot and get caught up in the world affairs. Now I found the old

show All In The Family.I also watch comedies more now than I used to. Sanford

and Son , Bewitched , All the old showes. I am 58 Male Single . Being 58 I

remember all the old showes. It is very hard to keep a happy mind all the time.

With the illness we have we can only do so much to help ourselves. I do day

dream about how I was 3 years ago before I got the Monster.

When I got it I got it really bad and the doctors said that at my age it was

very rear for me to have it. My last hosp. ER run was a few monthes ago and My

daughter found me face down on my desk. She came over because when she called me

I was mean to her. After 5 days she came over and found me at a blood presuer of

50/20 and slight breathing. I was dieing at that point. I had a few more hours

before I died on my desk. It was a Acute Stills Attach and Renal Failure. I went

to ICU on life support and dialisas . A week later I came out of the coma and

did not know anything about my daughter calling or the ER or anything. I was in

a 5 day walking blackout. The doctors told my family I would not make it through

the night that I would die. I am here .... They shot me up with 2,000 mg of

presidone . When I feel there is no hope and wish I was dead or start thinking

about killing myself, I think I could be dead right now and I am on God's time

clock. I had 6 doctors that said there is nothing more we can do , he will die.

I have a new Dodge truck the top of the line model . My truck is a 2006 and only

21,000 miles on it . For a example , My daughters car is not running and she

wanted to drive my truck. I never had let anybody drive my truck. I told her no

way you can not drive my truck. She said she knew I would say that. Well I

taught myself a lesson. I said to myself , let her drive that truck , You

are dead. I could be dead and that is just a truck you never drive much at all

and it is just a heap of metal . The moral to the story is chill out let

her drive it because " life is to short to worry about a Dam truck " so give her

the keys and I did just that.

She has been using it now for about a month and is buying her a BMW Monday .

Stills is a life threating illness, I know for a fact. Life really is short.

Give,Help,Care,Have Hope,Be Kind,but always have some time each day for

yourself. Don't worry about the future just don't worry about anything. Don't

worry be happy. It is hard to do all those things but if you have the

oppertunidy to do some thing, do it today and now because you might not be here

the next day or for that matter the next hour. Yes I feel like S..T most of the

time but we got to try to keep our ming busy. There are so many things I could

do around the house to keep busy but I only do a little at a time. Man I ramble

on don't I. If I get 2 things done I feel I did something and call it a day.

Just a couple chores and the next day a couple more and that is another day. I

will go put my laundry in the wash machine and when it is done I don't jump up

and put it in the dryer right than. When I feel like it I will go put It in the

dryer,it is not going anywhere it is just waiting for the dryer,that's all . Now

when I do go put it in the dryer and I here the buzzer go off and it is done, I

may get it or I may not. If I leave it I can always heat the

clothes up for no wrinkles. I do things on my time not on a need to do time like

most non sick people. So here I am writing and getting tired and I will go watch

TV and look at my dinner plans and prep half of it and when I am ready I will

have most of it done. Do things 1 at a time and you will see that things can get

a little easier if you only do things a little at a time and what ever needs

done it can wait till a time you feel like doing it. Vacume one room a day not

the whole house. Let the dishes pile up in the sink untill you feel like

cleaning up the kitchen.

If you have a dish washer full of clean dishes than just leave them and get what

you need instead of emptying the whole washer all at once. If you have your sink

full of dishes and it gets down to a half or lower and the sink is full don't

get the small amount of dishes out just fill up the washer and that saves you

time and bending over all the time. To keep your mind busy find a hobbie. I

collect coins on ebay . You could paint (ART),do beed work, write a book-a few

pages a day- cook for a neighbor if you like to cook , a pie would be something

you could do for yourself or a friend. No we don't have much energy but you

decide what and when you want to do something. You could make a photo album . I

bet you have a lot of pictures. Sometimes looking back as I do at times I like

to think I had a good life. You could paint some part of your house -inside-. a

little at a time. Write down all the things you like to do if you were well and

take that to work from and you will find something you could do to keep your

mind off what I like to call -Stinking Thinking- always look to God for guidance

in all thing in your life. I must close and I hope my words will help you in

some way and all the people on this site that take the time to read this book

LOL . Hugs to you and don't worry we will be by Gods side soon so smile and try

to make a life out of this as best as you can. You matter .........Try to find

your talent and use it to fill the whole in your life.

Proangler56

GARY

________________________________

To: Still's Disease <stillsdisease >

Sent: Sun, February 27, 2011 12:20:19 AM

Subject: RE: Pacing yourself