New Member

[Guest guest]

Thank you Trish

It is nice to know (well not nice, but you know! lol) that I'm not the only

child of BP who sees similar issues in myself. The flea idea is a comfort,

as it was to find that children needed help via therapy etc too, without

meaning that they had also been dxed with BP. I don't know whether it is

irrelevant or not - to work on the issues regardless of whether they are

learned or inherited (I see it as nature vs nurture - nature = I have it,

nurture = I learned it), I still have the issues to deal with!

I'm so glad I have a husband who accepts me and the 'quirks' I come with -

when we met he was being treated for bipolar, and has been medication +

therapy free now for almost 7 years (he stopped when our first child was a

month old) with no indications of recurrence, so he's gone from being the

'loopy' one (meant in an affectionate way, lol) to the stable rock he is

now. He's good for a close form of counselling - he lets me try things out

and rant and rave and analyse myself and helps me, rather than finding my

issues a problem.

Anyway rambling (again - I do that a lot, lol)

>

> , welcome! When I first read up about BPD, I started freaking

> out and worrying that I had BPD too. My therapist was the one who

> mentioned to me that my mother might have it. I was really worried

> about it for maybe 6 months and with reassurance from my therapist and

> this board, got over my fear that I had BPD.

>

> I agree with Freeasabird that many of us have " fleas " having grown up

> in homes where some pretty messed up behavior seemed normal. It just

> takes time around normal people and lots of introspection. I've made

> tremendous leaps and bounds in terms of my fleas since I started

> therapy and since I started posting on this board.

>

> Anyway, welcome and I hope to hear from you again soon.

>

> Trish

>

[Guest guest]

, that's really cool that your husband and you have that

relationship. My husband sometimes seems so. . .normal--which is good

in some ways, bad in others. He is certainly behind the curve in

dealing with abnormal folks such as my family and myself;)

Trish

> >

> > , welcome! When I first read up about BPD, I started freaking

> > out and worrying that I had BPD too. My therapist was the one who

> > mentioned to me that my mother might have it. I was really worried

> > about it for maybe 6 months and with reassurance from my therapist and

> > this board, got over my fear that I had BPD.

> >

> > I agree with Freeasabird that many of us have " fleas " having grown up

> > in homes where some pretty messed up behavior seemed normal. It just

> > takes time around normal people and lots of introspection. I've made

> > tremendous leaps and bounds in terms of my fleas since I started

> > therapy and since I started posting on this board.

> >

> > Anyway, welcome and I hope to hear from you again soon.

> >

> > Trish

> >

>

>

>

[Guest guest]

Ooh boy, now what? Keep me posted

Ompgene

In a message dated 2/28/2007 3:54:09 PM Central Standard Time,

irenevictoria.manias@... writes:

Imogene, I saw your note to Lynn about the meds and although my husband

isn't on any anitpsychotic medication, I do worry as on that list is Meripexin

as

we call it in Italy and he takes an antihistamine that ends in azane to help

with sleeping and I see these are both no nos. Irene

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[Guest guest]

Dina, or Dena, What profound insight! I appreciated your letter.

Imogene

In a message dated 2/28/2007 4:14:29 PM Central Standard Time,

dinacmcb@... writes:

Lynn,

Welcome to the group. I don't know about you - but I almost cried tears of

- joy, sadness, resignation - well, every emotion possible - when I found an

actual active group dedicated to those dealing with LBD! There's just no

such thing in my corner of the world - NW Oregon. I live in a large

metropolitan city - okay - not as big as Los Angeles or anything - but over

a million folks, there MUST be some other LBD caregivers out there - only I

just haven't been able to find them. So I thank God daily for this group of

lovely people! What a rich blessing - and incredible resource!

We've been so blessed, as has your Mom, to have my Mom end up with some

truly remarkable physicians on her medical team. It's a huge relief for me

to know that I have at least two health care professionals that I don't have

to pull out a brochure and walk through it with them. I LOVE that the

geriatric psychiatrist that Mom sees gets is WAY better than I do. What a

comfort!

Anyway, I just wanted to write and say I can relate. My Mom is young -

heck, so am I! She went downhill FAST - this time last year she was still

working full time in a very high tech job. My entire life she's been the

most engaged, involved, kind, gentle, sweet, funny, genuine person you'd

ever meet. She always had her hair perfectly coiffed, and her makeup

perfectly applied. Always perfectly and appropriately dressed. (I'm such

the antithesis of her! I'm the total granola girl - straight hair - it's a

banner day if I take a hairdryer to it, 99% of the time no makeup, and I

live in jeans and t-shirts.)

We moved Mom into a Memory Care facility four months ago - it was the

hardest decision I've ever made in my lifetime. But there was simply no

question left any longer - we just couldn't keep her safe at home any

longer. It was a huge transition - and heartbreaking. But yesterday as I

left after having visiting her I thought, " You know - she's actually happy

there. She loves her little apartment. She's actually making some

connections. This was the right move. " I didn't know if I'd ever be able

to say that last sentence! I am so thankful that I can now!

BUT, I guess the one thing that I can maybe offer a little but of

perspective on is this. I have worked in health care for years, myself. I

do patient advocacy and in the past have worked in medical research, etc.

One thing that I'm good at is taking care of people. I find that with Mom I

need to take a little bit of a half-step back emotionally and try to put

aside that she is NOT the same woman that I grew up with - she's just not.

(My 14-year-old daughter said, " Mom, it's kind of like Grandma's soul has

already gone to heaven, and her body is just stuck here for a little

while. " ) When I take care of her or interact with her, I try to remember

that she is someone that needs something that I can offer - a loving touch,

a gentle hug, a smile, a laugh, gentle direction toward the things that need

to be done - even though they seem frightening to her.

My Mom is afraid of pretty much everything - eating, drinking, sleeping,

waking, getting out of bed, getting into bed, dressing, toileting, bathing,

leaving her room, returning to her room, etc. Fear is the big hallmark of

her disease progress thus far. Something that for some reason I am able to

offer her at this juncture - is a calm, even toned conversation, just

sitting without rushing, or fidgeting, or the need for words to fill every

moment. Most of the time she isn't able to even hold up her end of the

conversation. What seems most comforting to her is if I will just simply

sit with her and tell her what's going on with the family - although 90% of

the time she has no true clue as to who the names represent any longer.

I've kind of - for the most part, I think - gotten to the point where I can

walk through the door to spend some time with Mom each day, knowing that I'm

going to go take care of one of my patients - and this patient just happens

to be my Mom.

Honesty- taking care of my Dad when he was dying of emphysema and COPD was a

HECK of a lot easier!

You'll be in my thoughts and prayers.

Blessings,

Dina

Care Manager to Mom, aged 66

dx'd with LBD 10/2006

[Non-text portions of this message have been removed]

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[Guest guest]

Imogene, I saw your note to Lynn about the meds and although my husband isn't on

any anitpsychotic medication, I do worry as on that list is Meripexin as we call

it in Italy and he takes an antihistamine that ends in azane to help with

sleeping and I see these are both no nos. Irene

[Guest guest]

Lynn,

Welcome to the group. I don't know about you - but I almost cried tears of

- joy, sadness, resignation - well, every emotion possible - when I found an

actual active group dedicated to those dealing with LBD! There's just no

such thing in my corner of the world - NW Oregon. I live in a large

metropolitan city - okay - not as big as Los Angeles or anything - but over

a million folks, there MUST be some other LBD caregivers out there - only I

just haven't been able to find them. So I thank God daily for this group of

lovely people! What a rich blessing - and incredible resource!

We've been so blessed, as has your Mom, to have my Mom end up with some

truly remarkable physicians on her medical team. It's a huge relief for me

to know that I have at least two health care professionals that I don't have

to pull out a brochure and walk through it with them. I LOVE that the

geriatric psychiatrist that Mom sees gets is WAY better than I do. What a

comfort!

Anyway, I just wanted to write and say I can relate. My Mom is young -

heck, so am I! She went downhill FAST - this time last year she was still

working full time in a very high tech job. My entire life she's been the

most engaged, involved, kind, gentle, sweet, funny, genuine person you'd

ever meet. She always had her hair perfectly coiffed, and her makeup

perfectly applied. Always perfectly and appropriately dressed. (I'm such

the antithesis of her! I'm the total granola girl - straight hair - it's a

banner day if I take a hairdryer to it, 99% of the time no makeup, and I

live in jeans and t-shirts.)

We moved Mom into a Memory Care facility four months ago - it was the

hardest decision I've ever made in my lifetime. But there was simply no

question left any longer - we just couldn't keep her safe at home any

longer. It was a huge transition - and heartbreaking. But yesterday as I

left after having visiting her I thought, " You know - she's actually happy

there. She loves her little apartment. She's actually making some

connections. This was the right move. " I didn't know if I'd ever be able

to say that last sentence! I am so thankful that I can now!

BUT, I guess the one thing that I can maybe offer a little but of

perspective on is this. I have worked in health care for years, myself. I

do patient advocacy and in the past have worked in medical research, etc.

One thing that I'm good at is taking care of people. I find that with Mom I

need to take a little bit of a half-step back emotionally and try to put

aside that she is NOT the same woman that I grew up with - she's just not.

(My 14-year-old daughter said, " Mom, it's kind of like Grandma's soul has

already gone to heaven, and her body is just stuck here for a little

while. " ) When I take care of her or interact with her, I try to remember

that she is someone that needs something that I can offer - a loving touch,

a gentle hug, a smile, a laugh, gentle direction toward the things that need

to be done - even though they seem frightening to her.

My Mom is afraid of pretty much everything - eating, drinking, sleeping,

waking, getting out of bed, getting into bed, dressing, toileting, bathing,

leaving her room, returning to her room, etc. Fear is the big hallmark of

her disease progress thus far. Something that for some reason I am able to

offer her at this juncture - is a calm, even toned conversation, just

sitting without rushing, or fidgeting, or the need for words to fill every

moment. Most of the time she isn't able to even hold up her end of the

conversation. What seems most comforting to her is if I will just simply

sit with her and tell her what's going on with the family - although 90% of

the time she has no true clue as to who the names represent any longer.

I've kind of - for the most part, I think - gotten to the point where I can

walk through the door to spend some time with Mom each day, knowing that I'm

going to go take care of one of my patients - and this patient just happens

to be my Mom.

Honesty- taking care of my Dad when he was dying of emphysema and COPD was a

HECK of a lot easier!

You'll be in my thoughts and prayers.

Blessings,

Dina

Care Manager to Mom, aged 66

dx'd with LBD 10/2006

[Guest guest]

Imogene, Do you have input on those two medications my husband takes that your

guidelines says he shouldn't? I don't want to call the neurologist and bug him

and doubt his judgement but I want to do the right thing for my husband. Any

input? Irene

[Guest guest]

Irene, oh my goodness, that was probably a few minutes but my dear, I have

already forgotten what medicines. You do know of course that my memory is

good, it is just short. (smile)

Imogene

In a message dated 3/1/2007 5:37:37 AM Central Standard Time,

irenevictoria.manias@... writes:

Imogene, Do you have input on those two medications my husband takes that

your guidelines says he shouldn't? I don't want to call the neurologist and

bug him and doubt his judgement but I want to do the right thing for my

husband. Any input? Irene

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

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[Guest guest]

Irene,

Welcome and I hope you will go to the bottom of this list and go to the " files "

where has made a file of a lot of everyones thoughts on drugs. Just

click on the blue (or colored ) files name. It will take you to yahoo site.

It is such a problem for most, since MDs like to prescribe them. The main

thoughts are to only add or subtact one drug at a time. Also start low and go

slow.

I know is working with the drug lists so I hope you can get to them.

The other files have a lot of input from others also.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: New member

Imogene, I saw your note to Lynn about the meds and although my husband isn't on

any anitpsychotic medication, I do worry as on that list is Meripexin as we call

it in Italy and he takes an antihistamine that ends in azane to help with

sleeping and I see these are both no nos. Irene

[Guest guest]

Quoting Iward27663@...:

Not to but in but

HALDOL HALDOL and HALDOL ( oh and add HALDOL and ATIVAN)

Haldol did my Dad in - almost 3 years ago - Feb 15 to be exact. Dr

said he was " agitated " - even though we had warnings and signs and a

note from the Neuro in his chart -he was given it aNyway.

He never recovered.

Donna

> irenevictoria.manias@... writes:

>

> Imogene, Do you have input on those two medications my husband takes that

> your guidelines says he shouldn't? I don't want to call the neurologist and

> bug him and doubt his judgement but I want to do the right thing for my

> husband. Any input? Irene

>

>

>

>

>

>

> <BR><BR><BR>**************************************<BR> AOL now offers free

> email to everyone. Find out more about what's free from AOL at

> http://www.aol.com.

>

>

>

[Guest guest]

Two common indicators are the " lewy lean " and " frozen gait "

sometimes my dad would literally run when we walked with him (81yrs

old then and incredibly fit -- no meds other than aricept at the

time) and then FREEZE and we would just have to wait (seemed like

forever) until he could resume his walk9usually stooped over)

The other pretty common feature is a runny nose... As the disease

progressed, this has stopped but many caregivers have commented on

it (at first we thought it was getting a cold) but it ran pretty

much daily..

Key to care giving is with the meds and caregivers attitudes

with meds -- LESS is better,

with attitude -- you just go along with what they see --my dad saw

horses, called us (daughters and other women ) " hes " and usually

thought he was at work (electrician) and would tell us to help him

pull wires or get tools and we did whatever we could.. when he was

violent -- we tried to calm him while trying to protect ourselves --

a scarry task for anyone..

Good luck to all

-- In LBDcaregivers , joanne seim

wrote:

>

> Donna,

>

> What is the " runny nose " you refer to here, is it common? My

dad has just started doing that!

> Joanne daughter of Joe 88

>

> donna wrote:

> ,

>

> I am so glad you found this site. When my sister and I did, I felt

> like a ton of bricks was lifted off my shoulders. All the

oddities,

> and extreme fluctuations in behavior, the runny nose, everything--

was

> experienced by someone else here and they all had great hints and

> advice . You will find a endless well of information-- I know I

have

> carried the list of good and bad meds in my pocketbook for 4 years

now

> and now my mom (not LEWY) is going in for her 3rd operation (due

to

> osteo arthritis -- bones keep breaking ) and the article on

anesthetia

> and the elderly is coming with us!!

>

> POST QUESTIONS, VENT, JOIN IN -- somehow finding people who share

your

> burden makes it more bearable...

>

>

>

>

>

>

> ---------------------------------

> We won't tell. Get more on shows you hate to love

> (and love to hate): Yahoo! TV's Guilty Pleasures list.

>

>

[Guest guest]

Hello,

My name is Alison and I am 40 years old.  I have been ill since 1993 and

finally diagnosed with Stills in 2009.  I am married with a 16 year old son and

my life has been altered by this disease.  I have been diagnosed with

everything from Fibra Myalgia to MS to " its all in your head " .  About 3 years

ago I started noticing a pattern of fevers and rashes and found a new doctor who

diagnosed me with Adult Onset Stills Disease.  I am taking Kineret along with

numerous other meds and am currently in a severe flare up right now.  Currently

I am unable to get out of bed and in so much pain I spend most of my time

crying.  At present I am at a loss of what to do to help myself and my

family.  Any advice will be greatly appreciated and I look forward to getting

to know you and offering my support.

Sincerely,

Alison Hendershot

[Guest guest]

Hi everyone. I'm 45 and have had Still's Disease for over 43 years. I know how

difficult this disease is. I know the pain and I've had many surgeries as a

result of the deterioration of my joints. I have controlled high blood pressure,

chronic pancreatitis, and sjogren's syndrome. This disease has taken its toll. 3

years ago I had to have my neck fused from my skull to almost the middle of my

back. I have been through a lot. But I maintain an active social life, I date

and I work a full time job. I'm even a distributor for a company that has had

remarkable results with reducing pain with their vitamins. It is so important to

keep a positive attitude. I know when you don't feel good it's hard to do, but

if you don't stay positive and know that things will get better the disease

wins. I am not about to let that happen. Just know that you will feel better. It

may not be tomorrow, but it will happen. I am sending some positive thoughts

your way , so I hope it helps.

Take care,

Bari

> Hay Alison

>

> Sorry you have to be here, but glad we are here for you. This is the most

> informative, supportive and empowering group of people you will find. The

> members will help you through your good times and bad. I hope that we share

more

> good times with you.

> It's difficult to have to have waited for so long for a diagnosis. Still's is

a

> life altering disease, as you have said. I hope we can help you through the

> rough patches!

>

> Smiles and regards

> Cat

>

> ________________________________

>

> Hello,

>

> My name is Alison and I am 40 years old. I have been ill since 1993 and

finally

> diagnosed with Stills in 2009. I am married with a 16 year old son and my life

> has been altered by this disease. I have been diagnosed

>

>

[Guest guest]

 

Hi Alison H.

 

Welcome to our family here and glad you found us just not happy that you had

reason to be looking.

yes stills is a life changer and for some its not just the change that the

illness brings but also some times the changes from the  people around us that

can not or refuse to deal with it along side of us. I had life changes from both

stills a the illness and from people who I thought would be there for me and

stand with me but did not and instead kicked my to the curb so to speak. I do

suggest one thing with all of this and that is councialing not only for your

self and to help you understand the changes in your life and people around you

but also for your whole family that you live with as it will also in many many

ways change there life’s also even if all think it will not right now believe

me

it dose as any of us can tell you so helping all to understand the changes and

how to adapt and deal with them is a good thing and gives every one the tools to

fight off a lot of the bad any illness like this can bring in to a family. in

ways its sad but its almost like dealing with a death only its a death of the

life you believed in and dreamed of from the time you were little as think about

it who ever dreamed that they would have an life long illness as mean as stills

when they dreamed of life growing up or for that fact even as they planned there

lives as an adult.

  So believe me when I say it helps as I say that from being stubborn and not

getting it or suggesting it a long time ago. but now I know better and so I

preach it so hopefully no one other will fallow my foot steps even if were I am

at today is a good place it was filled with uglys getting here that would and

could have been avoided for the most part.

 So with that again welcome to our family and hugs from this Redneck

The  Redneck  

Marty G     

 

I watch the sands of time run threw the hour glass of my life knowing I can not

change what has passed.

All I can do is live for today and hope for tomorrow and that it's a better day

then the one I am leavening here today

As I move into the one filled with hope that’s called tomorrow.

Marty G

3/29/2011 

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

 http://www.stillsdisease.org/stills_info

[Guest guest]

Newbie Also,

Hi, I am not diagnosed yet but I know AOSD is what it is. Gone thru a couple of

hospitalizations that included spinal taps and of course isloation, because I

must've had some bizarre virus that they couldn't identify. TWICE-SIX MONTHS

APART! They were amazed at the rash that especially gets bad at the backs of my

arms. They couldn't understand why tylenol wouldn't bring down those nasty

spiking 103 degree fevers and they had to pack me in ice. And then I'd soak the

sheets with my sweat. My eyes were terribly inflamed, and I had to beg for

saline to rinse them....it really annoys the nurses when you ask for things when

you are in isolation because you are placed far away from all other rooms and

then they have to dress in special garb to enter your room. Anyway, been

spending the past few months visiting doctors and ruling out all other diseases

in existance on the planet. Have appt with AOSD specialist this month finally!

Should I quit the plaquenil I'm on so I can flare just for the appt?

What would you do? Thanks.

PS I don't have anything positive to offer re: hope because I am at my wits end.

The joint pain has ruined my life. I have an ulcer from advil and am miserable.

My family, hubby, 2 boys 17 and 8, want their mom back. I'm 51. I would end it

if I didn't feel the need to carry on for them. Really.

>

> Dear Alison; I have had Stills for 3 years now. First of all,  we all cry.

Cry

> all you want to it is ok. I am a 57 Year old Male and this Monster makes me

cry.

> Before I got Stills I never cryed .

>

> You said you need to help yourself and your Family. I understand that. I hope

> your family knows what you are going through. We look normal but we are very

> sick and when we are down and out people and our family can't understand our

> pain and this illness. It is normal to look at someone and see a normal

person.

> AH! But that normal looking person really is very sick and the one you live

with

> or the one at the store you shop at has no idea you are sick.. Have you set

your

> family down and had a tlak about all your pain and educate them about Stills ?

> You need to take care of yourself and your family needs to take care of You.

You

> don't need to be worring about cooking dinner every night and do all the

laundry

> and house work. You need your family to help You.  Have a family meeting.

Have

> one ones a week and let them know how you are doing. Tell the truth and do not

> hide your pain and crying. Stress Will make you sicker, I know for a fact it

> will.  Try to get ahold of your self and get info to teach your family your

> illness and things might change around the house. You need that compassion and

> love from your whole extended family.

>

> You can't do it all by your self. Take charge of your life and try to overcome

> the Stress and don't look at the future, look at the hour and the day. That is

> all we can do for ourselves.

> Remind yourself that ( I am sick and I can stay in bed all I want ) Don't feel

> guilty about it.

>

> I Pray you have a good hour and or day. Look to God for help. Try to get on

the

> right med's and you might feel at least 40% better with the right med's and

> Docter. If said anything out of line I am sorry. May God be in your Heart.

Hugs

> from the whole group,we care about you, you are one of us.

>

> GARY

>

>

> ----- Forwarded Message ----

>

> To: Stills Support Group <Stillsdisease >

> Sent: Sat, April 9, 2011 4:19:02 PM

> Subject: New Member

>

>  

>

>

> Hello,

>

> My name is Alison and I am 40 years old.  I have been ill since 1993 and

finally

> diagnosed with Stills in 2009.  I am married with a 16 year old son and my

life

> has been altered by this disease.  I have been diagnosed with everything from

> Fibra Myalgia to MS to " its all in your head " .  About 3 years ago I started

> noticing a pattern of fevers and rashes and found a new doctor who diagnosed

me

> with Adult Onset Stills Disease.  I am taking Kineret along with numerous

other

> meds and am currently in a severe flare up right now.  Currently I am unable

to

> get out of bed and in so much pain I spend most of my time crying.  At

present I

> am at a loss of what to do to help myself and my family.  Any advice will be

> greatly appreciated and I look forward to getting to know you and offering my

> support.

>

>

> Sincerely,

>

> Alison Hendershot

>

>

[Guest guest]

i was diagnosed a yr ago nobody knew what i had it was discouraging having a

idagnosis is at least something i do cry sometimes especially during these

flares recent was was a bout of pleurisy i would like to say it will get b etter

but the truth is you just learn to handle it better

>

>

>

>Newbie Also,

>Hi, I am not diagnosed yet but I know AOSD is what it is. Gone thru a couple

of hospitalizations that included spinal taps and of course isloation, because I

must've had some bizarre virus that they couldn't identify. TWICE-SIX MONTHS

APART! They were amazed at the rash that especially gets bad at the backs of my

arms. They couldn't understand why tylenol wouldn't bring down those nasty

spiking 103 degree fevers and they had to pack me in ice. And then I'd soak the

sheets with my sweat. My eyes were terribly inflamed, and I had to beg for

saline to rinse them....it really annoys the nurses when you ask for things when

you are in isolation because you are placed far away from all other rooms and

then they have to dress in special garb to enter your room. Anyway, been

spending the past few months visiting doctors and ruling out all other diseases

in existance on the planet. Have appt with AOSD specialist this month finally!

Should I quit the plaquenil

I'm on so I can flare just for the appt?

>What would you do? Thanks.

>

>PS I don't have anything positive to offer re: hope because I am at my wits

end. The joint pain has ruined my life. I have an ulcer from advil and am

miserable. My family, hubby, 2 boys 17 and 8, want their mom back. I'm 51. I

would end it if I didn't feel the need to carry on for them. Really.

>

>

>>

>> Dear Alison; I have had Stills for 3 years now. First of all,  we all cry.

Cry

>> all you want to it is ok. I am a 57 Year old Male and this Monster makes me

cry.

>> Before I got Stills I never cryed .

>>

>> You said you need to help yourself and your Family. I understand that. I hope

>> your family knows what you are going through. We look normal but we are very

>> sick and when we are down and out people and our family can't understand our

>> pain and this illness. It is normal to look at someone and see a normal

person.

>> AH! But that normal looking person really is very sick and the one you live

with

>> or the one at the store you shop at has no idea you are sick.. Have you set

your

>> family down and had a tlak about all your pain and educate them about Stills

?

>> You need to take care of yourself and your family needs to take care of You.

You

>> don't need to be worring about cooking dinner every night and do all the

laundry

>> and house work. You need your family to help You.  Have a family meeting.

Have

>> one ones a week and let them know how you are doing. Tell the truth and do

not

>> hide your pain and crying. Stress Will make you sicker, I know for a fact it

>> will.  Try to get ahold of your self and get info to teach your family your

>> illness and things might change around the house. You need that compassion

and

>> love from your whole extended family.

>>

>> You can't do it all by your self. Take charge of your life and try to

overcome

>> the Stress and don't look at the future, look at the hour and the day. That

is

>> all we can do for ourselves.

>> Remind yourself that ( I am sick and I can stay in bed all I want ) Don't

feel

>> guilty about it.

>>

>> I Pray you have a good hour and or day. Look to God for help. Try to get on

the

>> right med's and you might feel at least 40% better with the right med's and

>> Docter. If said anything out of line I am sorry. May God be in your Heart.

Hugs

>> from the whole group,we care about you, you are one of us.

>>

>> GARY

>>

>>

>> ----- Forwarded Message ----

>>

>> To: Stills Support Group <Stillsdisease >

>> Sent: Sat, April 9, 2011 4:19:02 PM

>> Subject: New Member

>>

>>  

>>

>>

>> Hello,

>>

>> My name is Alison and I am 40 years old.  I have been ill since 1993 and

finally

>> diagnosed with Stills in 2009.  I am married with a 16 year old son and my

life

>> has been altered by this disease.  I have been diagnosed with everything

from

>> Fibra Myalgia to MS to " its all in your head " .  About 3 years ago I started

>> noticing a pattern of fevers and rashes and found a new doctor who diagnosed

me

>> with Adult Onset Stills Disease.  I am taking Kineret along with numerous

other

>> meds and am currently in a severe flare up right now.  Currently I am unable

to

>> get out of bed and in so much pain I spend most of my time crying.  At

present I

>> am at a loss of what to do to help myself and my family.  Any advice will be

>> greatly appreciated and I look forward to getting to know you and offering my

>> support.

>>

>>

>> Sincerely,

>>

>> Alison Hendershot

>>

>>