Sick and Tired of being Tired

[Guest guest]

Hello All, I'm so sick and tired of being tired. My migraine broke but then for

a few days I feel tired from the " adventure " . Extra meds, being down in bed and

doing nothing. Then the same old pattern of resting up from resting and never

getting anything done. I don't feel at this point that life has enough quality

to be alive. Simple bathing so I don't have to live with my own stink is such a

chore. Why oh why? There should be a point where we have a choice to end the

suffering. A magic pill. I look back since I've quit almost all activity when I

could do things and can't imagine how I did it. That feeling has been gone for

so long. I've done ALL I can do with the medical community for help and it's

just getting worse not better. Has anyone heard of this revearsing and being

better. Have you heard anyone say, oh what a hardship I went through, but I'm

sure glad it's over and feeling at least the same as before they went through

it? I haven't. Maybe that would give me some faith that I will be better. Just

tell me what it takes and I'll do it!! The Kennelog shot is wearing off and I'm

in a crash from being up a bit enought to sit up in bed and open mail,

whoopie!!! Life is grand. Love to you all,

[Guest guest]

Hi ,

I have had Still's Disease since I was 18 months old and I am 46 years old now.

I don't know a life before SD, but I can say that Cat made a good point when she

said you have a responsibility to help yourself. 3.5 years ago I got the dreaded

news that it was finally time to do the neck surgery I had been dreading for 20

years, a full neck fusion. I thought that was the end of my independence, but my

mom kept telling me I will be fine. She was right. It was hard and I went into a

severe depression after the surgery, but I am fine and I didn't lose any of my

independence. I have had lots of flares over the last few years. I am currently

on prednisone (5mg. a day), rituxan, arava and plaquenil. I'm not completely

pain free, but I can work and live a fairly normal life. I am a wheelchair user

and I am tired every day although the prednisone seems to be helping that some.

I haven't had a remission since I was in my 20s, but I keep a positive attitude

and keep

on smiling. Maybe it's easier for me because I don't remember life before SD.

But I can say that I will be damned if I let this disease get to me. Oh, I have

moments where I wonder what life would be like without SD, but I have SD for a

reason. I may never understand why, but I do know that I am an amazing person

even when I'm in pain and I can tolerate things that would bring most people to

their knees. There are positives to everything. Look for those positives because

things will always get better. I am so glad I didn't take my life before my neck

surgery, which was my almost 30th surgery overall. I considered it, but then I

thought about my mom, my sister, brother, and the rest of my family and even my

service dog who loves me no matter what. I just couldn't do that to them, and I

am glad. Has my life changed some, yes it has, but I can still work, drive and

live and enjoy. Will my life keep changing, absolutely. But like Cat said,

there's no

guarantees in life. I would have sworn my mom would live to be well into her

90s and I lost her last year at the age of 78. Nobody knows what tomorrow will

bring, so find the things you can enjoy. Yeah, you were able to get online today

for a while. Be happy about that instead of looking at all the things you're not

able to do. It's just my two cents.

Bari

> Hello All, I'm so sick and tired of being tired. My migraine broke but then

for a few days I feel tired from the " adventure " . Extra meds, being down in bed

and doing nothing. Then the same old pattern of resting up from resting and

never getting anything done. I don't feel at this point that life has enough

quality to be alive. Simple bathing so I don't have to live with my own stink is

such a chore. Why oh why? There should be a point where we have a choice to end

the suffering. A magic pill. I look back since I've quit almost all activity

when I could do things and can't imagine how I did it. That feeling has been

gone for so long. I've done ALL I can do with the medical community for help and

it's just getting worse not better. Has anyone heard of this revearsing and

being better. Have you heard anyone say, oh what a hardship I went through, but

I'm sure glad it's over and feeling at least the same as before they went

through it? I haven't. Maybe

that would give me some faith that I will be better. Just tell me what it takes

and I'll do it!! The Kennelog shot is wearing off and I'm in a crash from being

up a bit enought to sit up in bed and open mail, whoopie!!! Life is grand. Love

to you all,

>

>

[Guest guest]

Hi Bari,

I’m so sorry about you loosing your Mom. I too lost my Mom and she was only

67. I still miss her. So I guess I have to give myself the advice she would have

given me. You are right, I usually am the type of person to look at what good

there is. It’s just that being in bed almost all day even with a laptop for

access to the outside world is frustrating. I should be thankful for that! I

know this group is a place I can vent. I will take what you had to offer and

took the time to say and focus on that. I’ve lost my independence to a point

that I can only do some things sometimes. Work was lost in 2002. Not in a wheel

chair currently except for long walks beyond a few blocks. I don’t have a lift

so I cannot take it out to the mall or park or anywhere. But I get down and

depressed when my cortisone is low. I have addison’s disease also which knocks

me out. Steroids has caused a lot of damage and surgery would be rough but

probably another one coming, I’ve just been putting them off until I am well

enough to have another surgery. But my body needs to be in a place where it will

withstand the surgery. I’m glad that you can live a fairly normal life,

that’s wonderful! You are right that we can tolerate much more than anyone

probably can because of what we live through. Thanks again! xo gina

From: Bari

Sent: Wednesday, December 28, 2011 10:11 PM

To: Stillsdisease

Subject: Re: Sick and Tired of being Tired

Hi ,

I have had Still's Disease since I was 18 months old and I am 46 years old now.

I don't know a life before SD, but I can say that Cat made a good point when she

said you have a responsibility to help yourself. 3.5 years ago I got the dreaded

news that it was finally time to do the neck surgery I had been dreading for 20

years, a full neck fusion. I thought that was the end of my independence, but my

mom kept telling me I will be fine. She was right. It was hard and I went into a

severe depression after the surgery, but I am fine and I didn't lose any of my

independence. I have had lots of flares over the last few years. I am currently

on prednisone (5mg. a day), rituxan, arava and plaquenil. I'm not completely

pain free, but I can work and live a fairly normal life. I am a wheelchair user

and I am tired every day although the prednisone seems to be helping that some.

I haven't had a remission since I was in my 20s, but I keep a positive attitude

and keep

on smiling. Maybe it's easier for me because I don't remember life before SD.

But I can say that I will be damned if I let this disease get to me. Oh, I have

moments where I wonder what life would be like without SD, but I have SD for a

reason. I may never understand why, but I do know that I am an amazing person

even when I'm in pain and I can tolerate things that would bring most people to

their knees. There are positives to everything. Look for those positives because

things will always get better. I am so glad I didn't take my life before my neck

surgery, which was my almost 30th surgery overall. I considered it, but then I

thought about my mom, my sister, brother, and the rest of my family and even my

service dog who loves me no matter what. I just couldn't do that to them, and I

am glad. Has my life changed some, yes it has, but I can still work, drive and

live and enjoy. Will my life keep changing, absolutely. But like Cat said,

there's no

guarantees in life. I would have sworn my mom would live to be well into her 90s

and I lost her last year at the age of 78. Nobody knows what tomorrow will

bring, so find the things you can enjoy. Yeah, you were able to get online today

for a while. Be happy about that instead of looking at all the things you're not

able to do. It's just my two cents.

Bari

> Hello All, I'm so sick and tired of being tired. My migraine broke but then

for a few days I feel tired from the " adventure " . Extra meds, being down in bed

and doing nothing. Then the same old pattern of resting up from resting and

never getting anything done. I don't feel at this point that life has enough

quality to be alive. Simple bathing so I don't have to live with my own stink is

such a chore. Why oh why? There should be a point where we have a choice to end

the suffering. A magic pill. I look back since I've quit almost all activity

when I could do things and can't imagine how I did it. That feeling has been

gone for so long. I've done ALL I can do with the medical community for help and

it's just getting worse not better. Has anyone heard of this revearsing and

being better. Have you heard anyone say, oh what a hardship I went through, but

I'm sure glad it's over and feeling at least the same as before they went

through it? I haven't. Maybe

that would give me some faith that I will be better. Just tell me what it takes

and I'll do it!! The Kennelog shot is wearing off and I'm in a crash from being

up a bit enought to sit up in bed and open mail, whoopie!!! Life is grand. Love

to you all,

>

>

[Guest guest]

Hi ,

I have other issues too including sjogren's, pancreatitis, esophagitis and a few

other small issues. This disease sucks, but things can always be worse. My mom

and dad both taught me that I can do anything I set my mind too. So I choose to

look at all the positives in my life. I have some really great friends, a

supportive family, a caregiver who cares about me and a dog who loves me

unconditionally. What are your positives? What would your mom say to you? The

other day my caregiver was really sick, so for the very first time in my life I

showered myself. It was hard and I was exhausted and sore afterward , but I

called my sister and told her I did it and she was so proud of me and we talked

about what may make it easier next time. I'm not giving up my caregiver, but I

now know I can do it. I focused on being able to do it and not on how tired and

sore I was after. I hope tomorrow is a better day! I'm sure it will be!

Bari

> Hi Bari,

> I’m so sorry about you loosing your Mom. I too lost my Mom and she was only

67. I still miss her. So I guess I have to give myself the advice she would have

given me. You are right, I usually am the type of person to look at what good

there is. It’s just that being in bed almost all day even with a laptop for

access to the outside world is frustrating. I should be thankful for that! I

know this group is a place I can vent. I will take what you had to offer and

took the time to say and focus on that. I’ve lost my independence to a point

that I can only do some things sometimes. Work was lost in 2002. Not in a wheel

chair currently except for long walks beyond a few blocks. I don’t have a lift

so I cannot take it out to the mall or park or anywhere. But I get down and

depressed when my cortisone is low. I have addison’s disease also which knocks

me out. Steroids has caused a lot of damage and surgery would be rough but

probably another one coming, I’ve just been putting them off until I am well

enough to have another surgery. But my body needs to be in a place where it will

withstand the surgery. I’m glad that you can live a fairly normal life,

that’s wonderful! You are right that we can tolerate much more than anyone

probably can because of what we live through. Thanks again! xo gina

>

> From: Bari

> Sent: Wednesday, December 28, 2011 10:11 PM

> To: Stillsdisease

> Subject: Re: Sick and Tired of being Tired

>

> Hi ,

> I have had Still's Disease since I was 18 months old and I am 46 years old

now. I don't know a life before SD, but I can say that Cat made a good point

when she said you have a responsibility to help yourself. 3.5 years ago I got

the dreaded news that it was finally time to do the neck surgery I had been

dreading for 20 years, a full neck fusion. I thought that was the end of my

independence, but my mom kept telling me I will be fine. She was right. It was

hard and I went into a severe depression after the surgery, but I am fine and I

didn't lose any of my independence. I have had lots of flares over the last few

years. I am currently on prednisone (5mg. a day), rituxan, arava and plaquenil.

I'm not completely pain free, but I can work and live a fairly normal life. I am

a wheelchair user and I am tired every day although the prednisone seems to be

helping that some. I haven't had a remission since I was in my 20s, but I keep a

positive attitude and keep

> on smiling. Maybe it's easier for me because I don't remember life before SD.

But I can say that I will be damned if I let this disease get to me. Oh, I have

moments where I wonder what life would be like without SD, but I have SD for a

reason. I may never understand why, but I do know that I am an amazing person

even when I'm in pain and I can tolerate things that would bring most people to

their knees. There are positives to everything. Look for those positives because

things will always get better. I am so glad I didn't take my life before my neck

surgery, which was my almost 30th surgery overall. I considered it, but then I

thought about my mom, my sister, brother, and the rest of my family and even my

service dog who loves me no matter what. I just couldn't do that to them, and I

am glad. Has my life changed some, yes it has, but I can still work, drive and

live and enjoy. Will my life keep changing, absolutely. But like Cat said,

there's no

> guarantees in life. I would have sworn my mom would live to be well into her

90s and I lost her last year at the age of 78. Nobody knows what tomorrow will

bring, so find the things you can enjoy. Yeah, you were able to get online today

for a while. Be happy about that instead of looking at all the things you're not

able to do. It's just my two cents.

> Bari

>

>

>

> > Hello All, I'm so sick and tired of being tired. My migraine broke but then

for a few days I feel tired from the " adventure " . Extra meds, being down in bed

and doing nothing. Then the same old pattern of resting up from resting and

never getting anything done. I don't feel at this point that life has enough

quality to be alive. Simple bathing so I don't have to live with my own stink is

such a chore. Why oh why? There should be a point where we have a choice to end

the suffering. A magic pill. I look back since I've quit almost all activity

when I could do things and can't imagine how I did it. That feeling has been

gone for so long. I've done ALL I can do with the medical community for help and

it's just getting worse not better. Has anyone heard of this revearsing and

being better. Have you heard anyone say, oh what a hardship I went through, but

I'm sure glad it's over and feeling at least the same as before they went

through it? I haven't. Maybe

> that would give me some faith that I will be better. Just tell me what it

takes and I'll do it!! The Kennelog shot is wearing off and I'm in a crash from

being up a bit enought to sit up in bed and open mail, whoopie!!! Life is grand.

Love to you all,

> >

> >

>

>