Re: Has anyone had blackouts? Please help me...thanks

[Guest guest]

Hi

He needs to tell the doctor

Could be nothing, but they have to check. That's not a common thing with

Stills...it just he is ill and weak and it could be a number of things. Some of

which could need immediate attention. It could even be a heart arrythmia

cause he is so weak. Call your doctor...let me and all of us know.

Hugs

Liz

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[Guest guest]

> Before reading this please realize I am not a Dr in any way, shape or

> form...... I wound up blacking out, slurring my speach, wetting my bed etc

> after about a year after getting Stills. Most of it was attributed to Enbrel

> & my body not getting along too well, as most of those (though not all) of

> those problems slowly went away after stopping Enbrel. For a while Dr's were

> convinced I had MS.

>

I was 32 when I got sick also. Tell your son that he is more than

welcome to join us. I'm living proof that this is a great form of therapy as

I was your typical indestructible 32 year old punk...LOL. I worked 50-70

hour weeks, lifted weights 12-14 hrs/week....started a family, ran the

family business, built race cars & " Monster " Trucks......you name it. That

part of my life is long gone, and though I relish the memories my family

demands I live for today.

If your son is interested my personal email is kbonanny@... . My

name is Kirk Bonanny & I live just above Wilkes-Barre, Pa. He is going to

have to go through a lot more tests, especially if this sort of thing

becomes common. Tell him not to think about the possibilities, just go with

it. I tortured myself & everyone around me. If I could re-live it I'd be far

less scared.

Sorry you're here, but you found the greatest group of people you'll ever

encounter in so far as a support group goes! PS..did your son ever have even

a " quick " sickness earlier in his life with similar symptoms? Just curious,

as I'm damn near convinced the Army is what sparked mine, as I wound up in

an unknown hospital for over a week, and this was during the build up to the

1st Gulf War. They conveniently can't find any records of me ever being in

the hospital while in the service though, even though I was in more than

once.

Have a good night, Kirk.

PS...Tell us about him....general info such as married, where from,

interests, etc....

Adios, and forgive any typos...I get viscous headaches & double vision

all of the time, and they have no answer for that.

Kirk.

>

>

--

Everything in life sucks except things that should!

[Guest guest]

> Before reading this please realize I am not a Dr in any way, shape or

> form...... I wound up blacking out, slurring my speach, wetting my bed etc

> after about a year after getting Stills. Most of it was attributed to Enbrel

> & my body not getting along too well, as most of those (though not all) of

> those problems slowly went away after stopping Enbrel. For a while Dr's were

> convinced I had MS.

>

I was 32 when I got sick also. Tell your son that he is more than

welcome to join us. I'm living proof that this is a great form of therapy as

I was your typical indestructible 32 year old punk...LOL. I worked 50-70

hour weeks, lifted weights 12-14 hrs/week....started a family, ran the

family business, built race cars & " Monster " Trucks......you name it. That

part of my life is long gone, and though I relish the memories my family

demands I live for today.

If your son is interested my personal email is kbonanny@... . My

name is Kirk Bonanny & I live just above Wilkes-Barre, Pa. He is going to

have to go through a lot more tests, especially if this sort of thing

becomes common. Tell him not to think about the possibilities, just go with

it. I tortured myself & everyone around me. If I could re-live it I'd be far

less scared.

Sorry you're here, but you found the greatest group of people you'll ever

encounter in so far as a support group goes! PS..did your son ever have even

a " quick " sickness earlier in his life with similar symptoms? Just curious,

as I'm damn near convinced the Army is what sparked mine, as I wound up in

an unknown hospital for over a week, and this was during the build up to the

1st Gulf War. They conveniently can't find any records of me ever being in

the hospital while in the service though, even though I was in more than

once.

Have a good night, Kirk.

PS...Tell us about him....general info such as married, where from,

interests, etc....

Adios, and forgive any typos...I get viscous headaches & double vision

all of the time, and they have no answer for that.

Kirk.

>

>

--

Everything in life sucks except things that should!

[Guest guest]

> Before reading this please realize I am not a Dr in any way, shape or

> form...... I wound up blacking out, slurring my speach, wetting my bed etc

> after about a year after getting Stills. Most of it was attributed to Enbrel

> & my body not getting along too well, as most of those (though not all) of

> those problems slowly went away after stopping Enbrel. For a while Dr's were

> convinced I had MS.

>

I was 32 when I got sick also. Tell your son that he is more than

welcome to join us. I'm living proof that this is a great form of therapy as

I was your typical indestructible 32 year old punk...LOL. I worked 50-70

hour weeks, lifted weights 12-14 hrs/week....started a family, ran the

family business, built race cars & " Monster " Trucks......you name it. That

part of my life is long gone, and though I relish the memories my family

demands I live for today.

If your son is interested my personal email is kbonanny@... . My

name is Kirk Bonanny & I live just above Wilkes-Barre, Pa. He is going to

have to go through a lot more tests, especially if this sort of thing

becomes common. Tell him not to think about the possibilities, just go with

it. I tortured myself & everyone around me. If I could re-live it I'd be far

less scared.

Sorry you're here, but you found the greatest group of people you'll ever

encounter in so far as a support group goes! PS..did your son ever have even

a " quick " sickness earlier in his life with similar symptoms? Just curious,

as I'm damn near convinced the Army is what sparked mine, as I wound up in

an unknown hospital for over a week, and this was during the build up to the

1st Gulf War. They conveniently can't find any records of me ever being in

the hospital while in the service though, even though I was in more than

once.

Have a good night, Kirk.

PS...Tell us about him....general info such as married, where from,

interests, etc....

Adios, and forgive any typos...I get viscous headaches & double vision

all of the time, and they have no answer for that.

Kirk.

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Oh my goodness...I have not heard of anyone having blackouts. Maybe it's due to

the meds he's on...or something else. I'd say that's reason to rush to the Dr's

office if not the ER..at least find out why. I know I've felt dizzy at

times...but I think that's due to the meds...blood pressure related...not

Still's. Either way...he needs to see a professional. Make him go Mama.

in tX

[Guest guest]

Oh my goodness...I have not heard of anyone having blackouts. Maybe it's due to

the meds he's on...or something else. I'd say that's reason to rush to the Dr's

office if not the ER..at least find out why. I know I've felt dizzy at

times...but I think that's due to the meds...blood pressure related...not

Still's. Either way...he needs to see a professional. Make him go Mama.

in tX

[Guest guest]

Oh my goodness...I have not heard of anyone having blackouts. Maybe it's due to

the meds he's on...or something else. I'd say that's reason to rush to the Dr's

office if not the ER..at least find out why. I know I've felt dizzy at

times...but I think that's due to the meds...blood pressure related...not

Still's. Either way...he needs to see a professional. Make him go Mama.

in tX

[Guest guest]

Hi ,   One of the hardest things to learn to do with this illness is to be

totally honest with yourself and your doctor.  Every symptom you have needs to

be related to the doctor and they can decide if its still's related or a side

issue.  I don't think blacking out is typical of still's but it may be typical

of a certain medication he may be on.

The other problem i had getting use to is taking medication at all.  I was

always one to " wait out " a headache or pain rather than take something for it. 

You know, suck it up and deal with it.  Then if it lasted too long or got too

painful you took something for it.  That is exactly the wrong response to

still's.  Joint pain is caused by inflammation and inflammation causes damage to

the joints.  So if he's feeling pain, he should take whatever the doctor

recommends  to deal with it.  He can help reduce the possibility of joint damage

in the future.  I give full credit to my Rhummy doctor for starting me on meds

for inflammation within 6 weeks of the first symptoms of this disease.  A full

body bone scan shows no damage to my joints (beyond normal 46 year old wear and

tear!) and my doctor says it her job to keep it that way!  I love and worship

her! 

Unfortunately, not dealing with this doesn't make it go away.  It just increases

the possibility that you'll have more pain in the long run.  Hope you can talk

some sense into him!  I hope he appreciates your support.  He couldn't have a

better cheerleader than you!

Sue

________________________________

To: Stillsdisease

Sent: Sunday, November 2, 2008 1:39:13 AM

Subject: Has anyone had blackouts? Please help me...thanks

Hi again. I am the mother of the 32 year old who was recently

diagnosed with AOSD. Yesterday he had a blackout and fell down. He

was outside with his dog, talking to his neighbour,when it happened.

He said he was just " dizzy " and fell over...but he actually blacked out

for a few seconds.

Is this common for Stills? I am so worried about him...and he still is

having a hard time accepting he has AOSD. He is trying to put " mind

over matter " and not think about it... Please advise. thanks again

everyone.

[Guest guest]

Hi ,   One of the hardest things to learn to do with this illness is to be

totally honest with yourself and your doctor.  Every symptom you have needs to

be related to the doctor and they can decide if its still's related or a side

issue.  I don't think blacking out is typical of still's but it may be typical

of a certain medication he may be on.

The other problem i had getting use to is taking medication at all.  I was

always one to " wait out " a headache or pain rather than take something for it. 

You know, suck it up and deal with it.  Then if it lasted too long or got too

painful you took something for it.  That is exactly the wrong response to

still's.  Joint pain is caused by inflammation and inflammation causes damage to

the joints.  So if he's feeling pain, he should take whatever the doctor

recommends  to deal with it.  He can help reduce the possibility of joint damage

in the future.  I give full credit to my Rhummy doctor for starting me on meds

for inflammation within 6 weeks of the first symptoms of this disease.  A full

body bone scan shows no damage to my joints (beyond normal 46 year old wear and

tear!) and my doctor says it her job to keep it that way!  I love and worship

her! 

Unfortunately, not dealing with this doesn't make it go away.  It just increases

the possibility that you'll have more pain in the long run.  Hope you can talk

some sense into him!  I hope he appreciates your support.  He couldn't have a

better cheerleader than you!

Sue

________________________________

To: Stillsdisease

Sent: Sunday, November 2, 2008 1:39:13 AM

Subject: Has anyone had blackouts? Please help me...thanks

Hi again. I am the mother of the 32 year old who was recently

diagnosed with AOSD. Yesterday he had a blackout and fell down. He

was outside with his dog, talking to his neighbour,when it happened.

He said he was just " dizzy " and fell over...but he actually blacked out

for a few seconds.

Is this common for Stills? I am so worried about him...and he still is

having a hard time accepting he has AOSD. He is trying to put " mind

over matter " and not think about it... Please advise. thanks again

everyone.

[Guest guest]

Hi ,   One of the hardest things to learn to do with this illness is to be

totally honest with yourself and your doctor.  Every symptom you have needs to

be related to the doctor and they can decide if its still's related or a side

issue.  I don't think blacking out is typical of still's but it may be typical

of a certain medication he may be on.

The other problem i had getting use to is taking medication at all.  I was

always one to " wait out " a headache or pain rather than take something for it. 

You know, suck it up and deal with it.  Then if it lasted too long or got too

painful you took something for it.  That is exactly the wrong response to

still's.  Joint pain is caused by inflammation and inflammation causes damage to

the joints.  So if he's feeling pain, he should take whatever the doctor

recommends  to deal with it.  He can help reduce the possibility of joint damage

in the future.  I give full credit to my Rhummy doctor for starting me on meds

for inflammation within 6 weeks of the first symptoms of this disease.  A full

body bone scan shows no damage to my joints (beyond normal 46 year old wear and

tear!) and my doctor says it her job to keep it that way!  I love and worship

her! 

Unfortunately, not dealing with this doesn't make it go away.  It just increases

the possibility that you'll have more pain in the long run.  Hope you can talk

some sense into him!  I hope he appreciates your support.  He couldn't have a

better cheerleader than you!

Sue

________________________________

To: Stillsdisease

Sent: Sunday, November 2, 2008 1:39:13 AM

Subject: Has anyone had blackouts? Please help me...thanks

Hi again. I am the mother of the 32 year old who was recently

diagnosed with AOSD. Yesterday he had a blackout and fell down. He

was outside with his dog, talking to his neighbour,when it happened.

He said he was just " dizzy " and fell over...but he actually blacked out

for a few seconds.

Is this common for Stills? I am so worried about him...and he still is

having a hard time accepting he has AOSD. He is trying to put " mind

over matter " and not think about it... Please advise. thanks again

everyone.

[Guest guest]

While Stills can cause inflammation around the heart, I agree that it's

probably more medication related... I had terrible dizzy spells (although I

never actually blacked out) because of new eyedrops I started to take! They

made my heart race, and from what I understand, they reacted strongly with

the heart medication I was already on. I didn't mess around, and went to my

doctor about it. The side effect eventually went away, and all is well.

Drag him in to the doctor, and reassure him that it's not going to be this

hectic and frightening and annoying forever, just until he's stabilized. At

least, that's what I'm being told!

[Guest guest]

While Stills can cause inflammation around the heart, I agree that it's

probably more medication related... I had terrible dizzy spells (although I

never actually blacked out) because of new eyedrops I started to take! They

made my heart race, and from what I understand, they reacted strongly with

the heart medication I was already on. I didn't mess around, and went to my

doctor about it. The side effect eventually went away, and all is well.

Drag him in to the doctor, and reassure him that it's not going to be this

hectic and frightening and annoying forever, just until he's stabilized. At

least, that's what I'm being told!

[Guest guest]

While Stills can cause inflammation around the heart, I agree that it's

probably more medication related... I had terrible dizzy spells (although I

never actually blacked out) because of new eyedrops I started to take! They

made my heart race, and from what I understand, they reacted strongly with

the heart medication I was already on. I didn't mess around, and went to my

doctor about it. The side effect eventually went away, and all is well.

Drag him in to the doctor, and reassure him that it's not going to be this

hectic and frightening and annoying forever, just until he's stabilized. At

least, that's what I'm being told!

[Guest guest]

I to agree with . only when I did have some heart problems it was not

medacation related but stills driven. to this day I do have trouble now and then

with almost blacking out and a few times I have. this normaly happens when I

stand up from sitting or laying down . it is a drop in my blood pressure. when I

was first DX with stills and during my remision I was always in the area of

start of hight blood pressure now for the last two years I am down to were the

doctors love it but it is low for me so I feel it more when it drops . now it

runs mostly in the 110 over 70 range with a heart beat of around 84. this could

be my meds now not for sure but the docs are happy with it and do not worry

about it at all. there is also a lot of high blood pressure problems in my

family and in fact I am about the only one out of all my brothers and sisteres

mom and in fact nefs and nieces that dose not have a problem with it . so I deal

with the dizzy and black

outs in exchange for the high end that they all deal with gladly LOL any hoot

as always it is always best to have a doctor check it out and make sure it is

nothing other and then go from there! hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

I to agree with . only when I did have some heart problems it was not

medacation related but stills driven. to this day I do have trouble now and then

with almost blacking out and a few times I have. this normaly happens when I

stand up from sitting or laying down . it is a drop in my blood pressure. when I

was first DX with stills and during my remision I was always in the area of

start of hight blood pressure now for the last two years I am down to were the

doctors love it but it is low for me so I feel it more when it drops . now it

runs mostly in the 110 over 70 range with a heart beat of around 84. this could

be my meds now not for sure but the docs are happy with it and do not worry

about it at all. there is also a lot of high blood pressure problems in my

family and in fact I am about the only one out of all my brothers and sisteres

mom and in fact nefs and nieces that dose not have a problem with it . so I deal

with the dizzy and black

outs in exchange for the high end that they all deal with gladly LOL any hoot

as always it is always best to have a doctor check it out and make sure it is

nothing other and then go from there! hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

I to agree with . only when I did have some heart problems it was not

medacation related but stills driven. to this day I do have trouble now and then

with almost blacking out and a few times I have. this normaly happens when I

stand up from sitting or laying down . it is a drop in my blood pressure. when I

was first DX with stills and during my remision I was always in the area of

start of hight blood pressure now for the last two years I am down to were the

doctors love it but it is low for me so I feel it more when it drops . now it

runs mostly in the 110 over 70 range with a heart beat of around 84. this could

be my meds now not for sure but the docs are happy with it and do not worry

about it at all. there is also a lot of high blood pressure problems in my

family and in fact I am about the only one out of all my brothers and sisteres

mom and in fact nefs and nieces that dose not have a problem with it . so I deal

with the dizzy and black

outs in exchange for the high end that they all deal with gladly LOL any hoot

as always it is always best to have a doctor check it out and make sure it is

nothing other and then go from there! hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

it could probably be due to hyper/ hypotension

some medications may hav it as side effects

or perhaps even an anemia ,hypercholestrolemia

> I to agree with . only when I did have some heart problems it was

> not medacation related but stills driven. to this day I do have trouble now

> and then with almost blacking out and a few times I have. this normaly

> happens when I stand up from sitting or laying down . it is a drop in my

> blood pressure. when I was first DX with stills and during my remision I was

> always in the area of start of hight blood pressure now for the last two

> years I am down to were the doctors love it but it is low for me so I feel

> it more when it drops . now it runs mostly in the 110 over 70 range with a

> heart beat of around 84. this could be my meds now not for sure but the docs

> are happy with it and do not worry about it at all. there is also a lot of

> high blood pressure problems in my family and in fact I am about the only

> one out of all my brothers and sisteres mom and in fact nefs and nieces that

> dose not have a problem with it . so I deal with the dizzy and black

> outs in exchange for the high end that they all deal with gladly LOL any

> hoot as always it is always best to have a doctor check it out and make sure

> it is nothing other and then go from there! hugs

>

> the rednecks

> Marty & G.

> the redneck's my space http://www.myspace.com/martyg58

>

> Stills ; An illness I know to well!

> To learn about Stills http://www.stillsdisease.org/stills_info

> If you find yourself in a hole, the first thing to do is stop diggin'.

>

> In the old days a man who saved money was a miser; nowadays he's a wonder.

> ~Author Unknown

>

>

>

> " Taking my gun away because I might shoot someone is like cutting my tongue

> out because I might yell `Fire!' in a crowded theater. "

> -- Venetoklis

>

> A nation can survive its fools and even the ambitious. But it cannot

> survive treason from within.

> -- Cicero

>

>

[Guest guest]

Hi,

I have blackout myself. When I have, I know it is because of my ears. Has

your son ever had lots of ear infections? If so, he should have his ears

checked. If not, then I don't know, but I agree with the rest of the group

- he needs to tell his doctors.

I have had so many ear infections and my RD and ear specialist say that it

can happen and tie into stills, but that it does not happen to everyone. My

ear infections have led to cholestatoma cysts in the middle ear. I have had

one removed, but now I have to have another removed. It causes pressure in

the middle ear and sometimes (like the first time) I didn't know I had it.

Now I do, because my ear hurts all of the time. Anyway, if he experienced a

lot of ear infections as a child, I'd have the doc check his ears to make

sure that there is no retraction (hard to see) and to make sure that he does

not have a whole in his eardrum.

I hope this isn't the case and he just needs to get his meds balanced.

[Guest guest]

Hi,

I have blackout myself. When I have, I know it is because of my ears. Has

your son ever had lots of ear infections? If so, he should have his ears

checked. If not, then I don't know, but I agree with the rest of the group

- he needs to tell his doctors.

I have had so many ear infections and my RD and ear specialist say that it

can happen and tie into stills, but that it does not happen to everyone. My

ear infections have led to cholestatoma cysts in the middle ear. I have had

one removed, but now I have to have another removed. It causes pressure in

the middle ear and sometimes (like the first time) I didn't know I had it.

Now I do, because my ear hurts all of the time. Anyway, if he experienced a

lot of ear infections as a child, I'd have the doc check his ears to make

sure that there is no retraction (hard to see) and to make sure that he does

not have a whole in his eardrum.

I hope this isn't the case and he just needs to get his meds balanced.

[Guest guest]

Hi,

I have blackout myself. When I have, I know it is because of my ears. Has

your son ever had lots of ear infections? If so, he should have his ears

checked. If not, then I don't know, but I agree with the rest of the group

- he needs to tell his doctors.

I have had so many ear infections and my RD and ear specialist say that it

can happen and tie into stills, but that it does not happen to everyone. My

ear infections have led to cholestatoma cysts in the middle ear. I have had

one removed, but now I have to have another removed. It causes pressure in

the middle ear and sometimes (like the first time) I didn't know I had it.

Now I do, because my ear hurts all of the time. Anyway, if he experienced a

lot of ear infections as a child, I'd have the doc check his ears to make

sure that there is no retraction (hard to see) and to make sure that he does

not have a whole in his eardrum.

I hope this isn't the case and he just needs to get his meds balanced.

[Guest guest]

Hi Kirk

thank you for your response. It's harder for men with Stills (at least, that is

what I'm picking up on from all the notes I've been reading). My personal guess

is because men have more pressure on them to be the 'bread winners' and support

the family etc etc. Also, society supports a man being " measured " by the work

that he does. If he's not able to work...well, that right there makes a man

feel worthless. All of these pressures that we as humans create and then don't

know how to deal with when we get on the wrong end of it...interesting...right?

I firmly believe that we are better measured by how we handle emergencies and

tragic events rather than how we deal with success. Success and good health are

easy to respond to. When life throws you a real curve ball...that's how you

measure a true man (or woman's) strength.

I will hold onto your email address for now as right now my son is not even

wanting to talk about Stills...or admit he has a problem...or anything. A

comment he recently made to me was, " Mom, I'm trying not to think about it but

keep focused on when my next Dr's appointment is " . (Mike has to see the

specialist in 4 weeks). He has started weaning him off of prednisone and has

him on somem other medication...2 pills at night. I forget what it's called but

someone from the group said it isn't very effective.

As soon as Mike decides to accept what he has and ask for help...I will plug him

into you and to the group. His wife has been great and is trying to put

together a journal for him so he can monitor pain etc...but he doesn't seem too

interested. He is pretty angry and frustrated and I'm afraid he is making all

of the same mistakes I see that many other men with Stills have made. They take

out their circumstances on everyone around them, become bitter and restentful

and of course, this makes their stress worse which makes flares worse etc etc.

Has anyone in the group put together a complete list of all the drugs used for

Stills and then rated them? I work as an analyst (of sorts) and would be

willing to do a spread sheet...only I don't know the name of all the drugs. Can

you help with this project? It might prove very useful to everyone. I can put

it on a spread sheet and make it available on site. Folks could email me with a

rating for a particuar drug and I would update the chart when needed. It would

be a good source for new drugs as well...what do you think??

You have asked me if Mike has experienced any sudden illnesses? Not to my

knowledge. He has been in a couple of car accidents (not one was his

fault...both times someone ran a red light in an intersection...both in Calgary,

Alberta) which made him particularly still and sore afterwards. He has

complained since then of minor aches and pains and seemed too tired for someone

his age. It was this past April when the horrible painful and itchy rash

started that seemed to wake up the sleeping dragon called Stills. As a child,

he had the mumps and chickenpox. The only other thing different is that he

loves pepper (too much!) and he gets stressed easily when he sees other people

doing " wrong " things...like not putting their children in a seat belt for

example. He will honk his horn at the person and get angry...

Thanks again Kirk

Re: Has anyone had blackouts? Please help me...thanks

> Before reading this please realize I am not a Dr in any way, shape or

> form...... I wound up blacking out, slurring my speach, wetting my bed etc

> after about a year after getting Stills. Most of it was attributed to Enbrel

> & my body not getting along too well, as most of those (though not all) of

> those problems slowly went away after stopping Enbrel. For a while Dr's were

> convinced I had MS.

>

I was 32 when I got sick also. Tell your son that he is more than

welcome to join us. I'm living proof that this is a great form of therapy as

I was your typical indestructible 32 year old punk...LOL. I worked 50-70

hour weeks, lifted weights 12-14 hrs/week....started a family, ran the

family business, built race cars & " Monster " Trucks......you name it. That

part of my life is long gone, and though I relish the memories my family

demands I live for today.

If your son is interested my personal email is kbonanny@... . My

name is Kirk Bonanny & I live just above Wilkes-Barre, Pa. He is going to

have to go through a lot more tests, especially if this sort of thing

becomes common. Tell him not to think about the possibilities, just go with

it. I tortured myself & everyone around me. If I could re-live it I'd be far

less scared.

Sorry you're here, but you found the greatest group of people you'll ever

encounter in so far as a support group goes! PS..did your son ever have even

a " quick " sickness earlier in his life with similar symptoms? Just curious,

as I'm damn near convinced the Army is what sparked mine, as I wound up in

an unknown hospital for over a week, and this was during the build up to the

1st Gulf War. They conveniently can't find any records of me ever being in

the hospital while in the service though, even though I was in more than

once.

Have a good night, Kirk.

PS...Tell us about him....general info such as married, where from,

interests, etc....

Adios, and forgive any typos...I get viscous headaches & double vision

all of the time, and they have no answer for that.

Kirk.

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Hi Kirk

thank you for your response. It's harder for men with Stills (at least, that is

what I'm picking up on from all the notes I've been reading). My personal guess

is because men have more pressure on them to be the 'bread winners' and support

the family etc etc. Also, society supports a man being " measured " by the work

that he does. If he's not able to work...well, that right there makes a man

feel worthless. All of these pressures that we as humans create and then don't

know how to deal with when we get on the wrong end of it...interesting...right?

I firmly believe that we are better measured by how we handle emergencies and

tragic events rather than how we deal with success. Success and good health are

easy to respond to. When life throws you a real curve ball...that's how you

measure a true man (or woman's) strength.

I will hold onto your email address for now as right now my son is not even

wanting to talk about Stills...or admit he has a problem...or anything. A

comment he recently made to me was, " Mom, I'm trying not to think about it but

keep focused on when my next Dr's appointment is " . (Mike has to see the

specialist in 4 weeks). He has started weaning him off of prednisone and has

him on somem other medication...2 pills at night. I forget what it's called but

someone from the group said it isn't very effective.

As soon as Mike decides to accept what he has and ask for help...I will plug him

into you and to the group. His wife has been great and is trying to put

together a journal for him so he can monitor pain etc...but he doesn't seem too

interested. He is pretty angry and frustrated and I'm afraid he is making all

of the same mistakes I see that many other men with Stills have made. They take

out their circumstances on everyone around them, become bitter and restentful

and of course, this makes their stress worse which makes flares worse etc etc.

Has anyone in the group put together a complete list of all the drugs used for

Stills and then rated them? I work as an analyst (of sorts) and would be

willing to do a spread sheet...only I don't know the name of all the drugs. Can

you help with this project? It might prove very useful to everyone. I can put

it on a spread sheet and make it available on site. Folks could email me with a

rating for a particuar drug and I would update the chart when needed. It would

be a good source for new drugs as well...what do you think??

You have asked me if Mike has experienced any sudden illnesses? Not to my

knowledge. He has been in a couple of car accidents (not one was his

fault...both times someone ran a red light in an intersection...both in Calgary,

Alberta) which made him particularly still and sore afterwards. He has

complained since then of minor aches and pains and seemed too tired for someone

his age. It was this past April when the horrible painful and itchy rash

started that seemed to wake up the sleeping dragon called Stills. As a child,

he had the mumps and chickenpox. The only other thing different is that he

loves pepper (too much!) and he gets stressed easily when he sees other people

doing " wrong " things...like not putting their children in a seat belt for

example. He will honk his horn at the person and get angry...

Thanks again Kirk

Re: Has anyone had blackouts? Please help me...thanks

> Before reading this please realize I am not a Dr in any way, shape or

> form...... I wound up blacking out, slurring my speach, wetting my bed etc

> after about a year after getting Stills. Most of it was attributed to Enbrel

> & my body not getting along too well, as most of those (though not all) of

> those problems slowly went away after stopping Enbrel. For a while Dr's were

> convinced I had MS.

>

I was 32 when I got sick also. Tell your son that he is more than

welcome to join us. I'm living proof that this is a great form of therapy as

I was your typical indestructible 32 year old punk...LOL. I worked 50-70

hour weeks, lifted weights 12-14 hrs/week....started a family, ran the

family business, built race cars & " Monster " Trucks......you name it. That

part of my life is long gone, and though I relish the memories my family

demands I live for today.

If your son is interested my personal email is kbonanny@... . My

name is Kirk Bonanny & I live just above Wilkes-Barre, Pa. He is going to

have to go through a lot more tests, especially if this sort of thing

becomes common. Tell him not to think about the possibilities, just go with

it. I tortured myself & everyone around me. If I could re-live it I'd be far

less scared.

Sorry you're here, but you found the greatest group of people you'll ever

encounter in so far as a support group goes! PS..did your son ever have even

a " quick " sickness earlier in his life with similar symptoms? Just curious,

as I'm damn near convinced the Army is what sparked mine, as I wound up in

an unknown hospital for over a week, and this was during the build up to the

1st Gulf War. They conveniently can't find any records of me ever being in

the hospital while in the service though, even though I was in more than

once.

Have a good night, Kirk.

PS...Tell us about him....general info such as married, where from,

interests, etc....

Adios, and forgive any typos...I get viscous headaches & double vision

all of the time, and they have no answer for that.

Kirk.

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Worry wart mother

 It can be normal both because of medications and or stills. The only one that

can really say is his doctor. Now being he is just new to this world .I had ten

years on him when I was DX as I was 42. Get him on line and tell him to read and

ask any thing he wants here. there are a few of us men here and some like Kirk

were around his age at the onset and some like my self a bit older but young or

old we all have a lot of the same thoughts and feeling when first diagnosed with

stills. I am a believer that there is a set of worries and problems that men

face that woman do not and woman face some men do not. Men face some that as we

have grown up we were taught one thing and now stills forces us to relook at it

or even change our thoughts on it all.

 I know this sight has been a gift to me and my fight with stills and my

adjustment to life and my worth as I now see it and how I felt it was prestills

and I will say the two are 180% off of each other

 So glad your here posting and reading and the next step is to get him to read

some and then to also post things on his mind. also the main web page has lots

of info on it that helps but one thing I can not stress enough is coucialing as

living with a cornice illness changes many things in life and they can give you

tools and ideas how to work with it and deal with it . I know I was against it

big bad hard and now wish I would have as I believe the road I have traveled may

have been a bit easer had I had that help.

 if he wants I know he can also email me privately and ask any thing he wants if

I know I will tell him and if I do not I will tell him that but he better be

willing to here the truth as that is what I will tell him so best to you both  

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

Worry wart mother

 It can be normal both because of medications and or stills. The only one that

can really say is his doctor. Now being he is just new to this world .I had ten

years on him when I was DX as I was 42. Get him on line and tell him to read and

ask any thing he wants here. there are a few of us men here and some like Kirk

were around his age at the onset and some like my self a bit older but young or

old we all have a lot of the same thoughts and feeling when first diagnosed with

stills. I am a believer that there is a set of worries and problems that men

face that woman do not and woman face some men do not. Men face some that as we

have grown up we were taught one thing and now stills forces us to relook at it

or even change our thoughts on it all.

 I know this sight has been a gift to me and my fight with stills and my

adjustment to life and my worth as I now see it and how I felt it was prestills

and I will say the two are 180% off of each other

 So glad your here posting and reading and the next step is to get him to read

some and then to also post things on his mind. also the main web page has lots

of info on it that helps but one thing I can not stress enough is coucialing as

living with a cornice illness changes many things in life and they can give you

tools and ideas how to work with it and deal with it . I know I was against it

big bad hard and now wish I would have as I believe the road I have traveled may

have been a bit easer had I had that help.

 if he wants I know he can also email me privately and ask any thing he wants if

I know I will tell him and if I do not I will tell him that but he better be

willing to here the truth as that is what I will tell him so best to you both  

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

 denial is one of the steps we all go threw . anger is also one as is

acseptance. some move faster then others and some can get stuck along the way.

one trick is print out a post or two and leave it were he will see it and maybe

read it and let that be it tell he brings it up. I know as a mom that is hard .

my mom is always telling me to slow down and rest , not to push so hard, to eat

some thing ( a bad habit i have to bussy to eat) she worrys as you know a mom

dose. she will never stop and I try to help her not to so much but i also try to

protect her from the worry and stress of me as she also has three other kids and

sad part is only on has good health

 so also maybe let him know you do worry but that you also understand and that

you only say things because of your love but then again I bet you have done all

of that LOL

 hugs and your a good mom

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero