Some history

[Guest guest]

Hi everyone -

I wanted to share some history that I haven't really shared with everyone

about my story with stills(this is long), I started to get really odd

symptoms in 97, but ignored them. They usually went away once I got really

good sleep. That stayed the pattern until 2001. I had tingling pain on the

left side of my face, and horrible pain in my feet, knees and hands/wrist

daily, but the scariest symptom was that by 12 I'd start to lose my voice,

swollen glands, fevers up to 104 and horrible muscle pain (like I was

getting the flu -every single day). At first the doctors said... MS, then,

RA, then Lupus, it was a circle, they couldn't figure it out... Then at the

end of 2001, I woke up on my Birthday with a line of the weirdest looking

rash - on the left side of my face. I called into work, which I never did,

because I didn't want to let on to the fact that I was sick - my career was

too important to me, I had worked at this company at that time for over

11yrs and was now a VP and managed a dept of over 400 people. I loved my

job and was getting really scared that something was horribly wrong with me.

Then this painful rash - it's shingles (1st time - since then I've had it

two more times). So I get over Shingles and all the other symptoms remain -

and a new one starts up, Stabbing knife pain in my left eye about 15 times a

day from shingles - they dx that as Trigeminal Neuralgia or TN - It's the

major nerve in your face that feeds into your eye, jaw, and above your lip..

Well shingles damaged the nerve. So I have this daily stabbing pain in my

eye and left over pain on my face from shingles.

But the bomb really goes off about six months later in the summer of 2002.

The symptoms continue, but they are all getting worse. I pushed myself but

it was hard. We went to CA for a 5 day weekend. We stopped at one of the

beaches for about 15 minutes. I had sunscreen on, but I had a severe

reaction to the sun and that night my legs and ankles had a rash all over

them. The next morning, I could barely walk -they were so swollen and the

rash had spread all the way up my leg. My only regret is that I didn't go

to the ER then. I didn't think I needed to and I wish I had. I'm stubborn

sometimes and I just figured it was a weird sunburn. How stupid that was

looking back. However, I did go to a RD as soon as we got back home.

Immediately, he said 'you have an auto-immune disease' I don't know which

one, yet, but we treat most of them with the same drugs. And the pilgrimage

began.

I didn't stop working until March of 2004. I slowly gave up my career by

working part time. It was a part of me I didn't want to give up. The

company I worked for did have Long Term Disability insurance which makes a

big difference for me and I have Social Security now also. I didn't ever

see myself giving up my career, but even now, I know what my limitations are

- If I spend more than an hour doing any errands out of the house, I end up

much sicker at night then if I am more careful with my activity level. I

have to go out of the house because I can't stand being a recluse, but when

I do it, I know that I'll have more pain and a high fever that night. Some

days I'll even 'test' myself and say, lets stay out longer and see how I do,

and I'm always sorry when I do that. Even on vacation, I stay at the condo

while others go off and do the 'tourist' things.. At first it really

bothered me, but now I'm use to it and it's ok.

I decided to share this so some of you that have just been dx'd can read my

story. I'm better than when I stopped working. I had people telling me I

looked like 'death warmed over' back then. I'm better now that I have my

family around me - at least emotionally better. And let's face it - Seattle

rain isn't the place to live when you have Stills. I've learned how to

accept things and so has my husband. We actually have more time together now

then we ever had before, so we are looking for the silver lining in stills

and that is one of them.

Anyway - I do hope that this helps some of you get to know me better and

also see that you will go through an acceptance period in regards to stills.

It's OK to accept and still fight it at the same time.. That's what I do...

I'm not going to let it beat me .

Take care all...

[Guest guest]

,

Oh friend. I hate hearing that you still suffer to this degree. There has to

be some combo of meds to get you where you can at least get out more and go

sight-seeing on vacations. What have you tried?

Have you gotten other opinions from other docs?

I have always wondered about the sun issue. You had a horrible time with it.

Ironically, at my onset, I had gone to Hawaii a month before I was put in the

hospital. I laid out each day with less and less sunscreen and never got any

sun. I went home as pale as when I arrived. Even now, the sun never bothers me.

Boy do I feel blessed after reading your sun reaction. YIKES!

XOXO

allison laptop wrote:

Hi everyone -

I wanted to share some history that I haven't really shared with everyone

about my story with stills(this is long), I started to get really odd

symptoms in 97, but ignored them. They usually went away once I got really

good sleep. That stayed the pattern until 2001. I had tingling pain on the

left side of my face, and horrible pain in my feet, knees and hands/wrist

daily, but the scariest symptom was that by 12 I'd start to lose my voice,

swollen glands, fevers up to 104 and horrible muscle pain (like I was

getting the flu -every single day). At first the doctors said... MS, then,

RA, then Lupus, it was a circle, they couldn't figure it out... Then at the

end of 2001, I woke up on my Birthday with a line of the weirdest looking

rash - on the left side of my face. I called into work, which I never did,

because I didn't want to let on to the fact that I was sick - my career was

too important to me, I had worked at this company at that time for over

11yrs and was now a VP and managed a dept of over 400 people. I loved my

job and was getting really scared that something was horribly wrong with me.

Then this painful rash - it's shingles (1st time - since then I've had it

two more times). So I get over Shingles and all the other symptoms remain -

and a new one starts up, Stabbing knife pain in my left eye about 15 times a

day from shingles - they dx that as Trigeminal Neuralgia or TN - It's the

major nerve in your face that feeds into your eye, jaw, and above your lip..

Well shingles damaged the nerve. So I have this daily stabbing pain in my

eye and left over pain on my face from shingles.

But the bomb really goes off about six months later in the summer of 2002.

The symptoms continue, but they are all getting worse. I pushed myself but

it was hard. We went to CA for a 5 day weekend. We stopped at one of the

beaches for about 15 minutes. I had sunscreen on, but I had a severe

reaction to the sun and that night my legs and ankles had a rash all over

them. The next morning, I could barely walk -they were so swollen and the

rash had spread all the way up my leg. My only regret is that I didn't go

to the ER then. I didn't think I needed to and I wish I had. I'm stubborn

sometimes and I just figured it was a weird sunburn. How stupid that was

looking back. However, I did go to a RD as soon as we got back home.

Immediately, he said 'you have an auto-immune disease' I don't know which

one, yet, but we treat most of them with the same drugs. And the pilgrimage

began.

I didn't stop working until March of 2004. I slowly gave up my career by

working part time. It was a part of me I didn't want to give up. The

company I worked for did have Long Term Disability insurance which makes a

big difference for me and I have Social Security now also. I didn't ever

see myself giving up my career, but even now, I know what my limitations are

- If I spend more than an hour doing any errands out of the house, I end up

much sicker at night then if I am more careful with my activity level. I

have to go out of the house because I can't stand being a recluse, but when

I do it, I know that I'll have more pain and a high fever that night. Some

days I'll even 'test' myself and say, lets stay out longer and see how I do,

and I'm always sorry when I do that. Even on vacation, I stay at the condo

while others go off and do the 'tourist' things.. At first it really

bothered me, but now I'm use to it and it's ok.

I decided to share this so some of you that have just been dx'd can read my

story. I'm better than when I stopped working. I had people telling me I

looked like 'death warmed over' back then. I'm better now that I have my

family around me - at least emotionally better. And let's face it - Seattle

rain isn't the place to live when you have Stills. I've learned how to

accept things and so has my husband. We actually have more time together now

then we ever had before, so we are looking for the silver lining in stills

and that is one of them.

Anyway - I do hope that this helps some of you get to know me better and

also see that you will go through an acceptance period in regards to stills.

It's OK to accept and still fight it at the same time.. That's what I do...

I'm not going to let it beat me .

Take care all...

[Guest guest]

,

Well, I have gotten second opinions, but mostly they all say that I'm doing

what I can and that the best I can do is just Make sure I get enough rest.

It's frustrating sometimes and sometimes downright maddening. Especially

when I think, " oh, I can go to town with everyone... " and an hour into it,

feel like I'm going to drop because my temp is rising and my joints are

aching all over. " The only thing I can do when it gets to that point is go

back to the condo and get into bed (or sometimes rest at the pool). It's

really pathetic. But I've come to accept it for what it is. I know that I

can handle doing things in the morning. Forget the afternoons. And don't

ever ask me to go out to dance or dinner... That's just a joke. It's my

husband that gets the bad end of the stick in that regard (minus the part

that I'm the sickie)....

It is frustrating to know that every night you know you are going to feel

sick and it will be worse if you tried to do anything during the day. BUt I

can't live like a hermit either. My husband needs to have some activities

with me, so we just try to find the right balance - one that doesn't make my

temps go over 102. I can handle that. Anyway - we have both adjusted in

many ways. If we didn't have any faith in our lives it would be very

difficult to adjust to.

Take care, Hope you have a good day.

-- Re: Some history

,

Oh friend. I hate hearing that you still suffer to this degree. There has to

be some combo of meds to get you where you can at least get out more and go

sight-seeing on vacations. What have you tried?

Have you gotten other opinions from other docs?

I have always wondered about the sun issue. You had a horrible time with it.

Ironically, at my onset, I had gone to Hawaii a month before I was put in

the hospital. I laid out each day with less and less sunscreen and never got

any sun. I went home as pale as when I arrived. Even now, the sun never

bothers me. Boy do I feel blessed after reading your sun reaction. YIKES!

XOXO

allison laptop wrote:

Hi everyone -

I wanted to share some history that I haven't really shared with everyone

about my story with stills(this is long), I started to get really odd

symptoms in 97, but ignored them. They usually went away once I got really

good sleep. That stayed the pattern until 2001. I had tingling pain on the

left side of my face, and horrible pain in my feet, knees and hands/wrist

daily, but the scariest symptom was that by 12 I'd start to lose my voice,

swollen glands, fevers up to 104 and horrible muscle pain (like I was

getting the flu -every single day). At first the doctors said... MS, then,

RA, then Lupus, it was a circle, they couldn't figure it out... Then at the

end of 2001, I woke up on my Birthday with a line of the weirdest looking

rash - on the left side of my face. I called into work, which I never did,

because I didn't want to let on to the fact that I was sick - my career was

too important to me, I had worked at this company at that time for over

11yrs and was now a VP and managed a dept of over 400 people. I loved my

job and was getting really scared that something was horribly wrong with me.

Then this painful rash - it's shingles (1st time - since then I've had it

two more times). So I get over Shingles and all the other symptoms remain -

and a new one starts up, Stabbing knife pain in my left eye about 15 times a

day from shingles - they dx that as Trigeminal Neuralgia or TN - It's the

major nerve in your face that feeds into your eye, jaw, and above your lip..

Well shingles damaged the nerve. So I have this daily stabbing pain in my

eye and left over pain on my face from shingles.

But the bomb really goes off about six months later in the summer of 2002.

The symptoms continue, but they are all getting worse. I pushed myself but

it was hard. We went to CA for a 5 day weekend. We stopped at one of the

beaches for about 15 minutes. I had sunscreen on, but I had a severe

reaction to the sun and that night my legs and ankles had a rash all over

them. The next morning, I could barely walk -they were so swollen and the

rash had spread all the way up my leg. My only regret is that I didn't go

to the ER then. I didn't think I needed to and I wish I had. I'm stubborn

sometimes and I just figured it was a weird sunburn. How stupid that was

looking back. However, I did go to a RD as soon as we got back home.

Immediately, he said 'you have an auto-immune disease' I don't know which

one, yet, but we treat most of them with the same drugs. And the pilgrimage

began.

I didn't stop working until March of 2004. I slowly gave up my career by

working part time. It was a part of me I didn't want to give up. The

company I worked for did have Long Term Disability insurance which makes a

big difference for me and I have Social Security now also. I didn't ever

see myself giving up my career, but even now, I know what my limitations are

- If I spend more than an hour doing any errands out of the house, I end up

much sicker at night then if I am more careful with my activity level. I

have to go out of the house because I can't stand being a recluse, but when

I do it, I know that I'll have more pain and a high fever that night. Some

days I'll even 'test' myself and say, lets stay out longer and see how I do,

and I'm always sorry when I do that. Even on vacation, I stay at the condo

while others go off and do the 'tourist' things.. At first it really

bothered me, but now I'm use to it and it's ok.

I decided to share this so some of you that have just been dx'd can read my

story. I'm better than when I stopped working. I had people telling me I

looked like 'death warmed over' back then. I'm better now that I have my

family around me - at least emotionally better. And let's face it - Seattle

rain isn't the place to live when you have Stills. I've learned how to

accept things and so has my husband. We actually have more time together now

then we ever had before, so we are looking for the silver lining in stills

and that is one of them.

Anyway - I do hope that this helps some of you get to know me better and

also see that you will go through an acceptance period in regards to stills.

It's OK to accept and still fight it at the same time.. That's what I do...

I'm not going to let it beat me .

Take care all...

[Guest guest]

I know what you mean....about going out and my husband getting the

short end of the stick. I've been feeling better the last week or so,

so I decided to join my mother and her friends going to a concert. The

concert was great (The Romeros...a classical guitar quartet)...but

before intermission, I was in terrible pain. Just from sitting there!

Thank goodness I had my pain pills with me, and that just took the edge

off, so I didn't have to ruin the evening for my mother. But boy have

I paid today! Tons of pain! I think that's the first time I've gone

out in over a year...except for dinner etc. I'm ok for an hour or

so...but not 3! I do work full time (sort of...I pretend to work, they

pretend to pay me lol) and I'm much better in the mornings...by 1

o'clock I'm wooped. But it is frustrating!

Hope you all are having a better day than me!

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

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