New Here

[Guest guest]

Genie,

Hello. Welcome to our group. I am going through the beginning of Fibro,

RSD, and I also have Sacroiliac Joint Dysfunction. I am dealing with the

fact that I may not be better than I am. I am not working and every

treatment they have tried has not gotten me better to go back to work. I

am feeling over whelmed and now have been diagnosed with Severe

Depression and Stress Anxiety disorder. How do you get through all of

the things you have been threw. Every doctor I go to will not give me

anything for the pain but Neurontin and muscle relaxers. They say that I

have to get use to the pain because I will have it forever. I don't

believe this is the way it should be, but I can't get anyone to help me.

My new therapist for the depression is surprised that I am not getting

anything for the pain. It is getting hard to continue with my exercises

lately which cause more pain. Well I have to go, I am having pain in my

right arm and shoulder and this typing is killing me. I have to write a

paper for a class yet that is due Sunday so I need to go.

Stella

NEW HERE

Hi my name is Genie and I am new here to your group. I thought I

should tell you about myself. I am married to a great guy, thank God!

I have 1 daughter that will be 24 in May I have a Step-Son that is

25, he is married and they have a little girl that will be 3 in

April, she is the light of my life! I was injured at work in June of

1988, I have not been able to work since then, I was forced to

retire in 1990. Since my accident I have undergone 15 surgeries, 11

of them related to the accident, the others were female surgeries. I

have been diagnosed with Chronic Myofascial Pain Syndrome, Reflex

Sympathetic Dystrophy, Fibromyalgia, Arthritus of the Neck and Lower

Lumbar Region, Throacic Outlet Syndrome, Carpal Tunnel,Chronic

Migraines, I have all the other problems that go along with the

Fibro. I have a metal plate and 7 screws in my right ankle holding it

together, metal in my neck from a Cervical Fusion and will most

likely need another level done before long as the disc above the

fusion is now bulging. I could probably tyep more but it would take

me all night and I can't sit here that long but I do want to tell you

that despite all of my medical problems I do try to keep a positive

outlook on life, it is extremely difficult most days but thanks to

haveing a wonderful husband that has stood by me and a beautiful

grandaughter to make me smile it is a bit easier to bare. I have been

through so much and believe I can be of help to others just by

talking to them for i definiately do understand and have most likely

been through what they have or are going to be going through. I hope

to talk to and get to know you all and if you want to know more about

me please don't hesitate to ask. some times it might take me a day or

so to get back to you due to pain levels but I will get back to you.

" Genie "

[Guest guest]

Hi Genie (and other new members),

Welcome to the group. You're absolutely right about a positive outlook, and

it sounds like you have a supportive family. That alone can make a world of

difference.

I'm 46, married to a wonderful woman and we have a 23-year-old son. I've

been on disability since 2000, but was off work before that and have been

fighting a downhill battle for many, many years. I had spinal surgery in

1973, and my health has been deteriorating since 1980.

I hope you find this group helpful. We have a great bunch here.

Hower

http://home.dejazzd.com/hower

[Guest guest]

Stela, My heart goers out to you sweetie, I have been exactly where

you are and believe me I still have days where I feel just as you do

right now,it is really late right now and I need to go try to get me

a little bit of sleep, that is all I ever get! LOL but hey some is

better than none. Do me a favor, email me ok, we will talk and I will

see what you have or haven't done to try to see if I can maybe make a

few suggestions that might help ya out.

Hug's,

Genie

> Genie,

>

> Hello. Welcome to our group. I am going through the beginning of

Fibro,

> RSD, and I also have Sacroiliac Joint Dysfunction. I am dealing

with the

> fact that I may not be better than I am. I am not working and every

> treatment they have tried has not gotten me better to go back to

work. I

> am feeling over whelmed and now have been diagnosed with Severe

> Depression and Stress Anxiety disorder. How do you get through all

of

> the things you have been threw. Every doctor I go to will not give

me

> anything for the pain but Neurontin and muscle relaxers. They say

that I

> have to get use to the pain because I will have it forever. I don't

> believe this is the way it should be, but I can't get anyone to

help me.

> My new therapist for the depression is surprised that I am not

getting

> anything for the pain. It is getting hard to continue with my

exercises

> lately which cause more pain. Well I have to go, I am having pain

in my

> right arm and shoulder and this typing is killing me. I have to

write a

> paper for a class yet that is due Sunday so I need to go.

> Stella

>

> NEW HERE

>

> Hi my name is Genie and I am new here to your group. I thought I

> should tell you about myself. I am married to a great guy, thank

God!

> I have 1 daughter that will be 24 in May I have a Step-Son that is

> 25, he is married and they have a little girl that will be 3 in

> April, she is the light of my life! I was injured at work in June

of

> 1988, I have not been able to work since then, I was forced to

> retire in 1990. Since my accident I have undergone 15 surgeries, 11

> of them related to the accident, the others were female surgeries.

I

> have been diagnosed with Chronic Myofascial Pain Syndrome, Reflex

> Sympathetic Dystrophy, Fibromyalgia, Arthritus of the Neck and

Lower

> Lumbar Region, Throacic Outlet Syndrome, Carpal Tunnel,Chronic

> Migraines, I have all the other problems that go along with the

> Fibro. I have a metal plate and 7 screws in my right ankle holding

it

> together, metal in my neck from a Cervical Fusion and will most

> likely need another level done before long as the disc above the

> fusion is now bulging. I could probably tyep more but it would take

> me all night and I can't sit here that long but I do want to tell

you

> that despite all of my medical problems I do try to keep a positive

> outlook on life, it is extremely difficult most days but thanks to

> haveing a wonderful husband that has stood by me and a beautiful

> grandaughter to make me smile it is a bit easier to bare. I have

been

> through so much and believe I can be of help to others just by

> talking to them for i definiately do understand and have most

likely

> been through what they have or are going to be going through. I

hope

> to talk to and get to know you all and if you want to know more

about

> me please don't hesitate to ask. some times it might take me a day

or

> so to get back to you due to pain levels but I will get back to you.

> " Genie "

>

>

>

>

>

>

[Guest guest]

WELCOME ALL NEW PEOPLE. I HOPE YOU ENJOY OUR FAMILY HERE. WE LOOK AFTER EACH

OTHER AND GIVE SUPPORT AND COMFORT TO ALL. PLEASE FEEL FREE TO EMAIL ME

ANYTIME IF YOU WANT. GOD BLESS AND HOPE YOU ENJOY THE GROUP. LOTS OF

WONDERFUL PEOPLE HERE.

YOUR FRIEND IN PAIN BEV

-- Re: NEW HERE

thank you so much for welcoming me here! I am sorry it has taken

me a bit to answer you, I just tonight saw your message, I am still

trying to figure out how this thing works! LOL, so far everyone I

have gotten a post from has been really great so I am sure I will

definitely like here.

Thanks again . If you ever need anyone to talk to give me a

hollar!

Genie

>

> Hi Genie (and other new members),

>

> Welcome to the group. You're absolutely right about a positive

outlook, and

> it sounds like you have a supportive family. That alone can make a

world of

> difference.

>

> I'm 46, married to a wonderful woman and we have a 23-year-old son.

I've

> been on disability since 2000, but was off work before that and

have been

> fighting a downhill battle for many, many years. I had spinal

surgery in

> 1973, and my health has been deteriorating since 1980.

>

> I hope you find this group helpful. We have a great bunch here.

>

> Hower

>

> http://home.dejazzd.com/hower

[Guest guest]

Bev, thanks so much for the welcome!

Genie

> >

> > Hi Genie (and other new members),

> >

> > Welcome to the group. You're absolutely right about a positive

> outlook, and

> > it sounds like you have a supportive family. That alone can make a

> world of

> > difference.

> >

> > I'm 46, married to a wonderful woman and we have a 23-year-old

son.

> I've

> > been on disability since 2000, but was off work before that and

> have been

> > fighting a downhill battle for many, many years. I had spinal

> surgery in

> > 1973, and my health has been deteriorating since 1980.

> >

> > I hope you find this group helpful. We have a great bunch here.

> >

> > Hower

> >

> > http://home.dejazzd.com/hower

>

>

>

[Guest guest]

Fran so good to hear from you just sorry we are meeting under such

circumstances! but I have met some of the best people in the world

since having chronic pain!

I have taken down your email and will send you a message there too!

Genie

> Hi, Genie!

> Welcome!! You and I could be " twins in pain " -- I too have RSD,

Fibro,

> arthritis in my neck and lower back, carpal tunnel, migraines. I

also have

> irritable bowel syndrome and my right kidney has atrophied due to

the RSD. I

> too was injured at work, breaking a small bone in my ankle.

Unfortunately, I

> didn't get diagnosed with a break until it was too late to stop the

RSD.

> I hope you enjoy being a member here. If you'd like to talk

privately, feel

> free to contact me. Like you, the pain sometimes delays my answer,

but I

> will write back.

> Gentle hugs,

> Fran

>

>

>

[Guest guest]

,

As a 68 year OF, I have that problem and find that Celebrex works for me.

If it gets to bad, my neurologist has me go to 400 mg daily (not recommended

by manu.).

That helps a lot, and so far not side effects.

Hope this helps your creaky joints.

Temp

////////

New Here

Hi,

My name is and I am 32. I live in southern NH, with my hubby and

three boys. I have been dealing with painful joints and muscles for about

5

years, it all seemed to start with a bad car accident. My dr. can't find

anything so I'm finally going to see a phsyiologist to try to get some

answers. I have either chronic tendonitis or pain in every major joint, I

bruise if someone looks at me (big change for me) tender area on muscles,

and I am losing my hand and arm strength. Everything is worse in the

colder

weather, so it is getting to be my season to suffer, and also if it is

damp.

I was on Vioxx for the athritis in my knee, but my insurance company

decided that a 30 y.o did not need it, and it is expensive. It was about

the

only thing that helped.

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[Guest guest]

Hi !

I have CFS/FMS/and now RA. I take prednisone

occassionally for really bad flares. It's not good

for bones though and because of my age they don't want

to give it very often. It does work to help

inflammation rather quickly short term.

--- wrote:

> Hi,

>

> I am new here and thank you for letting me share.

>

> I have had CFS for 20 years. I came down with strep

> throat, Mono, and

> secondary Hepatitis in 1/1988 that lasted for 3

> months. I got slightly

> better but kept feeling like I was going to pass out

> until 12/1988 at which

> time the Hepatitis came back.

[Guest guest]

HI Sandrea,

Thank you for the welcome. Thankfully my children are now all grown and out

of the house. I had to quit working as I was falling asleep everywhere. I

have Idiopathic Hypersomnolence and all the symptoms of Narcolepsy except

the catapl (?). The virus or my migraines did some damage to my brain but

no one knows what.

I am getting so fed up with all the “We don’t know” answers I get from all

my myriad of physicians. I am on so many medications that I feel like a

walking medicine cabinet. I was looking up my symptoms from one of the

links from here and I think that I will have the test for MS as I have a lot

of the symptoms. I didn’t want it last year as it is a spinal tap and I am

allergic to local anesthetic but if I do have it, I read that it is

important to get on medication sooner than later.

I had to get off the 20 mg. steroid and yesterday started taking 5 mg. for 7

days. I felt pretty good though not as good as the 20 mg. but I really

don’t want to stay up for 23 hours again! :-) It is amazing how my body

aches and pains are so lessened with this stuff. I will look up the info on

the adrenal glands. I don’t understand why the Doctors can’t keep us on a

small amount of the steroids since it helps SO VERY MUCH. They could

monitor it to make sure it is not doing damage.

[Guest guest]

Hi and Welcome , wow your story sounds a lot like mine…but I’m a

Canadian and I got diagnosed with ME (the international name for what is

often called CFS in the States – long and confusing story). I’ve been ill

for 21 years and much sicker for the past 18 months. I too developed

anaphylactic allergies, chem. sensitivities etc.etc. – oh I feel as if I’ve

done & had it all! A Private Investigator eh? COOL…maybe a second career

writing mysteries(?), though I know in real life it is not as interesting as

it is in fiction. Well, maybe not as interesting as raising 6 kids! So sad

about losing a babe to SIDS, and who really knows if it’s connected.

I’m afraid I’ve stayed off the steroids so I don’t have a good answer for

you there, but as you’ve discovered, us types react very weirdly to meds! In

general, I do know that an artificial boost can make us feel good for the

moment, but as we are still so ill, we burn our circuits out. So, you stayed

awake for a full day, but then you crashed – no wonder. Too bad hey,

wouldn’t it be nice. Once upon a time I had a similar reaction to gamma

globulin…I’d feel great for 2 days then crash, but as a single parent that

bit of energy was so precious to me. I got allergic to the preservative, and

that was the end of that. In retrospect, I would say that the high is not

worth the crash, but isn’t it wonderful to just have a pain

Holiday once in awhile. In fact I’d love a holidayfrom the whole thing!

I suspect that you may enjoy reading about ME…check out a hummingbird’s

guide (website), it has the best info from that perspective. I also just got

a great book, written 10 years ago but just full of info like what you are

asking – Chronic Fatigue Syndrome – A Treatment Guide, By Verrullo & Gellman

– very comprehensive and goes into the metabolsm of drugs etc. way more than

I can understand!

Anyway I wish you well and you are not alone here, Welcome. Aylwin xo

[Guest guest]

Huh? The usual test for MS is an MRI…no anesthetic involved…and also it may

show some of the brain damage. I just had one after 21 years of ME, and had

a significant result, looking like MS, but ME does look like ME on an MRI

sometimes too. I’m off to the neuro Thus. so we shall see! I am also

allergic to local anesthetics, but I think part of the problem for me is the

preservatives in injectables…I managed to get away with one for some dental

work that is preservative free, it’s called citanest prilocaine

hydrochloride (just FYI). Steroids are very hard on the immune system over

time…it’s better to do short bursts rather than an ongoing dose, or so I’ve

heard. Take Care, Aylwin

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of

Sent: Wednesday, November 21, 2007 10:05 AM

To: CFAlliance

Subject: Re: New here

HI Sandrea,

Thank you for the welcome. Thankfully my children are now all grown and out

of the house. I had to quit working as I was falling asleep everywhere. I

have Idiopathic Hypersomnolence and all the symptoms of Narcolepsy except

the catapl (?). The virus or my migraines did some damage to my brain but

no one knows what.

[Guest guest]

Hi Sandrea,

I am already feeling the negative effects of the steroids. I started taking

5 mg. last Tuesday. On Friday I started feeling tired and ill and I

remembered that I was suppose to increase the steroid to 10 mg. I felt

great until Sunday night when I felt so very tired with my migraine worse.

Yesterday I had a bad migraine all day and started to feel nausea. I fell

asleep at 6:00 PM and slept until 10:30 PM. So I guess you would need to

keep increasing the steroid every few days to keep it working. My Doctor

only gave me a week to take it with today being the last day. I feel very

weepy and sad. I don't want to go back into the " dark " again. I know that

the steroids are not the answer but taking them makes so very much more

aware of just how ill I am. My family was so happy and excited that I was

in the land of the living and I feel bad that I am not going to stay for

them. This illness is horrible and I guess I didn't realize how much of

life I was missing until I took these steroids. I know the risks outweigh

the benefits but I want to fight this thing now more as I have seen the

difference.

Yes, I know the spinal tap will be painful especially as I am intolerant of

local anesthetic. They have two MRI's of my brain from last year. They did

them six months apart. I don't know why they did them so closely? What is

strange is my ex-husband has MS and I read that MS may come from a virus.

While we were married he had EIGHT blood transfusions. (long story) That

was before they checked the blood so I sometimes wonder.

Is there a test to test for adrenal fatigue? I know that everything

relating to CFS seems to point to the adrenal glands, as of last week's

steroid study.

If everything points to the adrenal glands why can't the help CFS sufferers?

Thanks for your input.

[Guest guest]

Hi ,

Thanks for the information. I don’t think that is a cure now and I can see

how long term use could turn life threatening. I will also use it only for

emergency use.

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Getter

Sent: Monday, November 26, 2007 7:30 PM

To: CFAlliance

Subject: Re: New here

Hi ,

Pred can be a very scary drug, I refer to it as " making a deal with

the devil " , I have personally dealt with life theatening side effects

having my BP skyrocket into near stroke, not to mention that it can

cause bone loss, weight gain (I put on 45 lbs), hair growth, night

sweats, vision loss and much more.

[Guest guest]

Hi,

No, second career as of yet; I would love to write a book but I get too

tired quickly. Maybe if I set the publishing date at 2050 I would be okay!

:-)

It sounds like your novel would be a two part story of “Survivor” and

“Sleuthing”! I’m just working on the first part for now but it would be

interesting to follow a case from home though I use to be a control freak,

still am, so I would probably end up overly anxious and fall asleep on

everyone when I didn’t get the right results or answers. End of Case.

Take care,

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jayne Barnard

Sent: Tuesday, November 27, 2007 11:32 AM

To: CFAlliance

Subject: Re: New here

“A Private Investigator eh? COOL…maybe a second career writing

mysteries(?),”

, I’d love to hear more about your ‘second career’. I’m just finishing

up a mystery novel of my own (my ‘home in bed’ project from last winter),

whose heroine has CFS & MCS. She has to keep finagling her friends and her

spouse into doing the active sleuthing for her while she stays home away

from chemicals, germs and general over-stimulation.

[Guest guest]

Hi Sandrea,

I was seeing double by the time I read your email. Why can’t the Doctors

just do what they are supposed to do or look for it? I can hardly remember

what happened to me yesterday let alone retain all this information.

I can’t take Provigil as I have Mitral Valve Prolapse with arrhythmias. I

drink coffee and keep moving when I really need to stay awake. I can still

fall asleep with a pot and a half in me though so it doesn’t work that

great. It’s amazing that the only thing that 100% worked were the steroids.

Take Care,

[Guest guest]

“The thing is, when you boost yourself artificially, you also wear yourself

out doing more than you should, and often end up in worse shape.”

That is very, very true, and something I wish had been drilled into me by

the first doctor to diagnose my CFS back in ’92.

Instead he told me there was no known treatment and sent me home.’ I went

along for years doing everything I could to keep going physically and

financially, instead of giving my body what it needed most: rest. Who knows

if I’d be this sick now if I had simply been able to rest instead of those

two-plus years of prednisone (which, by the way, felt wonderful to me at the

time; sorry it’s not helping you, ).

Could I, a mere newbie, ask a favour? Could people please put separate their

posts into short paragraphs instead of one long one? After about ten lines

my eyes get so tired that the letters all blur together. I’m probably

missing vital information by having to skim past the posts that are all one

long paragraph.

Thanks,

Jayne

[Guest guest]

Hi Jayne, yes, I think the same…if I had been advised to simply go to bed it

would have made all the difference. But still, as a single parent of 2 small

kids when I got ill, I don’t know how I would have done it anyway. As it

was, I slept every minute they were at daycare as well as at night, and got

heavy servicing from social services too…out of school care, homemakers etc.

And I am sorry to be one of the worst perps of typing long paragraphs…and I

will work to make them shorter! TC, Aylwin xox

[Guest guest]

Hi ,

Sorry to hear you can't take Provigil. I can't either. It sure would

be nice if they would listen and research and find a cure.

Sandrea

[Guest guest]

Yes, our neurologist explained to us that our daughter is on the

spectrum also (diagnosed with Asperger's) specifically because of the

area affected by her PMG can explain her social deficits and extremely

concrete thinking patterns. This actually makes sense because there are

different parts of the brain that are involved with social understanding

and communication, and if they are malformed, then one is going to have

difficulty in these ways (and thus the additional diagnosis of an

autistic spectrum disorder.) As Diane has said, it is just a label, but

in our case it has been extremely helpful in getting accommodations that

otherwise would not be in place for her in school. In addition, for the

first time, insurance is picking up speech therapy for us. The primary

diagnosis is still PMG, but the autism is a manifestation of it.

> Welcome to the group, PMG can cause autisic like symptoms. I can think of many

things to help. I am not sure a diagnosis is important except to get SSI or

medicaid. You are going to help him function at the highest he can. The first

one is a neuropsychological full evaluation. Some schools or childern hospitals

have transition clinics or social workers are very helpful. Depends on what kind

of problems you are having?

> Diane

>

> New here

>

> Hi all! My name is Jaylyn. I'm new here because I'm looking for information.

My son was diagnosed with PMG at age 5. He is now 15. When I was told he had

PMD, the doctor told me it was causing him to be autistic. Well here we are 10

years later, and I'm wondering if that is correct. So I'd like to get another

opinion, but I'm unsure what kind of doctor to take him to.

>

> My son can talk well, but some people have difficulty understanding him. Some

times people think he has an english accent. lol

> He is emotionally alot younger than his age. He is also very behind

academically. He is in special education, and they work with him at his

abilities.

>

> I'm not sure if there is anything more I can be doing for him, but at least

I'd like to know. I'd hate to be working on his " autism " if that is not really

the problem.

>

> So at this point, I'm trying to figure out what to do next, especially with

him nearing the adult age.

>

> If you have any advice that could point me in the right direction, it would be

appreciated.

>

> Thanks, I look forward to getting to know all of you!

> Jaylyn

>

>

>

>

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

>

>

[Guest guest]

I usually say she has pmg and that one of its manifestations is autism.

It explains the root cause of the autism and makes the diagnosis of

autism more valid in some people's eyes (i.e with the school district,

as we were able to get accommodations under " other health impairments "

due to the PMG diagnosis), since it provides an anatomical correlate to

the behaviors being experienced. However, most people have no idea what

PMG is but the majority have some understanding of autism, so it may

also depend on who you are sharing the information with as to how you

explain it.

>

> Ok, so it sounds like perhaps this is a common result of PMG. I'm glad to

> know that.

>

> So, when you are discussing her with professionals, do you say she has PMD

> with autism? We've just been saying my son is autistic, but perhaps the

> additional information of PMD would be useful?

>

> On Sun, Nov 14, 2010 at 7:37 PM, and Kent

> <smkent@... <mailto:smkent%40swbell.net>

> > wrote:

>

> > Yes, our neurologist explained to us that our daughter is on the

> > spectrum also (diagnosed with Asperger's) specifically because of the

> > area affected by her PMG can explain her social deficits and extremely

> > concrete thinking patterns. This actually makes sense because there are

> > different parts of the brain that are involved with social understanding

> > and communication, and if they are malformed, then one is going to have

> > difficulty in these ways (and thus the additional diagnosis of an

> > autistic spectrum disorder.) As Diane has said, it is just a label, but

> > in our case it has been extremely helpful in getting accommodations that

> > otherwise would not be in place for her in school. In addition, for the

> > first time, insurance is picking up speech therapy for us. The primary

> > diagnosis is still PMG, but the autism is a manifestation of it.

> >

> >

> > > Welcome to the group, PMG can cause autisic like symptoms. I can

> think of

> > many things to help. I am not sure a diagnosis is important except

> to get

> > SSI or medicaid. You are going to help him function at the highest

> he can.

> > The first one is a neuropsychological full evaluation. Some schools or

> > childern hospitals have transition clinics or social workers are very

> > helpful. Depends on what kind of problems you are having?

> > > Diane

> > >

> > > New here

> > >

> > > Hi all! My name is Jaylyn. I'm new here because I'm looking for

> > information. My son was diagnosed with PMG at age 5. He is now 15.

> When I

> > was told he had PMD, the doctor told me it was causing him to be

> autistic.

> > Well here we are 10 years later, and I'm wondering if that is

> correct. So

> > I'd like to get another opinion, but I'm unsure what kind of doctor

> to take

> > him to.

> > >

> > > My son can talk well, but some people have difficulty

> understanding him.

> > Some times people think he has an english accent. lol

> > > He is emotionally alot younger than his age. He is also very behind

> > academically. He is in special education, and they work with him at his

> > abilities.

> > >

> > > I'm not sure if there is anything more I can be doing for him, but at

> > least I'd like to know. I'd hate to be working on his " autism " if

> that is

> > not really the problem.

> > >

> > > So at this point, I'm trying to figure out what to do next, especially

> > with him nearing the adult age.

> > >

> > > If you have any advice that could point me in the right direction, it

> > would be appreciated.

> > >

> > > Thanks, I look forward to getting to know all of you!

> > > Jaylyn

> > >

> > >

> > >

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