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Dodge,

Welcome aboard. I live in Carson City - I'm a native So. Californian. I've

always lived so close to enough wildfires that I know what a ominous force fire

is. Amazing and terrifying at the same time. I so admire what you have done.

I'm so sorry you got burned. I have been fortunate in that I've never had any

loss from fire directly, but I've been around plenty who have. Helped people

evacuate, help some relocate, evacuated myself a couple times but was lucky,

etc.

You've been through one of the worst things imaginable in my mind. Whatever you

have had to take to get through it, thank heaven it brought even a little

relief. You should never worry about what people think. Anyone that would

judge you doesn't deserve your concern. It took incredible courage and strength

for you just to survive.

Welcome to this group, they are a great group of understanding and compassionate

people. I think you will be glad to be here. I hope we can provide some

suggestions and answers for you.

Angie

Carson City, NV; IT Professional, Writer, Single, five children (3 at home), 2

dogs, 5 cats, snow skiing, camping, Harley Rider, Lone Wolf, Blue Thong

Society/High Sierra Thong Snappers member, LFA Advocate, independent,

opinionated, outspoken, and open minded.

" It's always something. " ~~~Gilda Radner

http://360.yahoo.com/lovinglifeinnv

http://www.myspace.com/amkg

http://doripost.agrato.info/

http://www.facebook.com/

http://health.groups.yahoo.com/group/LupusSurvivorsU/

Intro

Hi all:

My name is Dodge. Nope, it's not a nickname. I am a 36 year old male, who used

to be a smokejumper/ wildland firefighter and law enforcement park ranger

in my former life. Unfortunately, in a firefighter' s worst nightmare, I was

burned... Badly. I received third, or fifth depending on who you talk to, degree

burns over 70% of my body. The burns were so extensive that some of my bones and

organs were charred.

While I was in the burn unit, I found out that I have Ankylosing Spondylitis,

Fibromyalgia, Lupus and possibly Rheumatoid Arthritis.

My doctors have me on 100mg of Oxycontin twice a day, 60mg of Oxy IR four times

a day, and 25mg of Demerol six times a day, if I need it.

I usually live in TX and Montreal, Canada, but right now, I'm staying with some

friends in Las Vegas, as it has just been a year since I was burned. I own

my home in Montreal, so that's probably where I'll end up, once I'm on my feet.

I lost my TX home when I was in the burn unit for nine months, so I don't

know about moving back there.

I have been reading some of the posts here, and I have to say that I am an avid

coasttocoastam listener and a streamlink member! I love 's show, but I'm

sad Art doesn't do the show anymore.

Anyhow, that's enough about me, I look forward to discussion with people who

will not stigmatize me for using opioids and being in chronic pain.

--

Dodge

________________________________________________________________________________\

____

Check out the hottest 2008 models today at Yahoo! Autos.

http://autos.yahoo.com/new_cars.html

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Hi Dodge,

What an intro! You have obviously been though a nightmare in the

last year. My heart goes out to you. As if being badly burned was

not enough for any person, you got some big time crappy diagnoses

while recovering.

What is coasttocoastam-a talk show? Where do you find it?

If you want to rub elbows with people in chronic pain, you have come

to the right place. As a group, we have plenty of pain. We don't

think using drugs for pain is shameful.

I am so glad to welcome you into our group. You will find love and

support here to get you through the bad days. Email me or us anytime

you need to talk. It seems to be what I do best these days (LOL).

I am 57 years old. I was diagnosed with fibromyalgia and severe

osteoarthritis in February of this year. Like most people here I

went to the doctor over and over in pain everywhere and she didn't

seem to have a clue. I finally got diagnosed in a pain clinic and by

a rheumatologist. I am married with one child who is a lot younger

than you are--he is only 32 (LOL). My husband is an electrical

engineer and he has been very supportive.

Unfortunately, as far as I am concerned, no one can understand

chronic pain as well as someone else that has it.

Love,

Annie

>

> Hi all:

>

> My name is Dodge. Nope, it's not a nickname. I am a 36 year old

male, who used to be a smokejumper/wildland firefighter and law

enforcement park ranger

> in my former life. Unfortunately, in a firefighter's worst

nightmare, I was burned... Badly. I received third, or fifth

depending on who you talk to, degree

> burns over 70% of my body. The burns were so extensive that some of

my bones and organs were charred.

>

> While I was in the burn unit, I found out that I have Ankylosing

Spondylitis, Fibromyalgia, Lupus and possibly Rheumatoid Arthritis.

>

> My doctors have me on 100mg of Oxycontin twice a day, 60mg of Oxy

IR four times a day, and 25mg of Demerol six times a day, if I need

it.

>

> I usually live in TX and Montreal, Canada, but right now, I'm

staying with some friends in Las Vegas, as it has just been a year

since I was burned. I own

> my home in Montreal, so that's probably where I'll end up, once I'm

on my feet. I lost my TX home when I was in the burn unit for nine

months, so I don't

> know about moving back there.

>

> I have been reading some of the posts here, and I have to say that

I am an avid coasttocoastam listener and a streamlink member! I love

's show, but I'm sad Art doesn't do the show anymore.

>

> Anyhow, that's enough about me, I look forward to discussion with

people who will not stigmatize me for using opioids and being in

chronic pain.

> --

> Dodge

>

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wow what a nightmare you have gone through sweetie. I could not imagine. TG you

are still alive. I am in TX. If you make it down here again, let me know.

Dodge wrote: Hi all:

My name is Dodge. Nope, it's not a nickname. I am a 36 year old male, who used

to be a smokejumper/wildland firefighter and law enforcement park ranger

in my former life. Unfortunately, in a firefighter's worst nightmare, I was

burned... Badly. I received third, or fifth depending on who you talk to, degree

burns over 70% of my body. The burns were so extensive that some of my bones and

organs were charred.

While I was in the burn unit, I found out that I have Ankylosing Spondylitis,

Fibromyalgia, Lupus and possibly Rheumatoid Arthritis.

My doctors have me on 100mg of Oxycontin twice a day, 60mg of Oxy IR four times

a day, and 25mg of Demerol six times a day, if I need it.

I usually live in TX and Montreal, Canada, but right now, I'm staying with some

friends in Las Vegas, as it has just been a year since I was burned. I own

my home in Montreal, so that's probably where I'll end up, once I'm on my feet.

I lost my TX home when I was in the burn unit for nine months, so I don't

know about moving back there.

I have been reading some of the posts here, and I have to say that I am an avid

coasttocoastam listener and a streamlink member! I love 's show, but I'm

sad Art doesn't do the show anymore.

Anyhow, that's enough about me, I look forward to discussion with people who

will not stigmatize me for using opioids and being in chronic pain.

--

Dodge

www.iamshaman. net/affiliatewiz /aw.aspx? B=2 & A=317

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Dodge~

I'm certainly not going to criticize or stimatize you for using the drugs you

need to be as comfortable as you can. My first husband was a smoke jumper in

Montana, landed in a tree, was burned and that was the end of his career, too.

Welcome to the group. It's a great group of people.

This is Connie from Michigan, married with two adopted boys. I'm a pediatric

nurse and haven't worked since May.

Again . . . .

Welcome!

~Connie

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  • 2 weeks later...

I've been lurking for a couple of weeks, and would like to introduce

myself if I may. There's an intro post format on another list that

I'd like to use if that's ok. Yes, I did post the same thing on the

other list. :)

Age range:

57

Male/female:

Female. Single. 36-36-36. Sign: Virgo. Likes quiche and romantic

walks in the - OOPS! - sorry. Heh heh heh. Wrong list. ;D ;D

What are the symptoms?

Frequent incidences of widespread, unexplained, generalized pain.

When asked " Where does it hurt " , the answer is " everywhere " . The

roots of my hair hurt, my fingernails hurt, it hurts to wear

clothing. The closest analogy is that it's like a fire deep under

my skin.

Has you illness been diagnosed?

Yes.

How long did you suffer before you got help?

I've been asking for help since 1961. Most of the time, it's been

" all in my head " . I came on an osteopathic practice about 21 years

ago with some exceptional doctors, who think outside the box. The

practice developed over the years into a clinic that specializes in

pain and " wimmen's issues " .

Is there a time that you can remember when it started?

1961. Sixth grade. I spent a week in the hospital for " unexplained

pain " . I've been trying to explain it ever since.

Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also?

I was overweight as a kid (didn't know how good I had it then, though

I had the life tormented out of me for being - horrors! 150 or so).

I was super morbidly obese for most of my adult life. 26 months ago

I had weight loss surgery (Duodenal Switch). It worked. Then

starting last November, I had one knee replaced, then the other end

of January. I can now walk two long blocks down, two over, and

back. I can actually go to the grocery store now. Amazing.

Are you on disability?

Yes.

If you are, any hints for others trying to get disability?

Not really.

I actually went out for three conditions: super morbid obesity,

degenerative knees, and fibromyalgia. I was pressured greatly by my

long term disability several months ago: since the obesity is

resolved and the knees are replaced, why can't I go back to work? I

was on the verge of having yet another surgery to repair an

incisional abdominal hernia that looked like a baby alien. I

absolutely freaked. My doc evaluated me, and wrote a letter to the

insurance co. explaining basically that three major surgeries within

six months of each other (not even including the weight loss surgery

in 2005, making four major surgeries in less than 2 years) had

severely depleted me and left me in a state of constant fibromyalgia

flareup. Basically, I feel like I don't have an endorphin left in my

body.

I don't know if I would have tried to go out on fibromyalgia alone,

but then, I've worked with fibromyalgia all of my life, as well as

obesity and degenerative knees, but it was just that the intertwined,

interconnected conditions got so bad back in 2005 that I couldn't

work anymore. Even with the resolution of the obesity and knees, I'm

still in pain from my knees (pain doesn't magically go away there

either; it's just different from feeling like I have size 4 knitting

needles jammed into my knee joints), and have frequent fibro

attacks. My recovery from both obesity and knee replacement depends

on my being physically active; I walk nearly every day, and try to do

things around my property. But going to the pool, like I did this

summer - I'm allergic to chlorine, which triggers flareups, and

exercise usually triggers flareups. When I take a long walk,

especially in this miserable endless Indian summer weather, that's

pretty much it for the day. I worked on painting trim on my house

for a couple of hours earlier in the week. You guessed it:

flareup. Theoretically, " limited " gentle exercise should make it

possible to preclude exercise-related flareups, but I haven't yet

figured out which minute at any particular time on any particular day

is the one that will trigger the flareup. And I have flareups

anyway: theoretically, Monday should have been a " good " day - clear,

high pressure weather, fairly cool. I had a major flareup anyway.

In any case, my level of exercise right now is determined by what my

muscles and my knees need, not by what will prevent a flareup. I

know darned well that if I go back to work at this point, I will not

be able to exercise. My new bionic knees simply will not tolerate

that. I didn't go through the last 26 months to let it slip away.

Add to that the stress of working, and that cubicles don't usually

come with couches, or jobs with afternoon naps...

Social Security has yet to bug me about going back. I suspect that I

may have a fight when they do; on the other hand, maybe with

treatment I can get back to work soon. Like I said, I worked for

many years with multiple problems; I just need to be able to work

with one now. Should be a piece of cake (HAH! RIGHT!).

What have you found that helps ease the pain, warm baths, medications

etc.?

Treatments like osteopathic manipulation and acupuncture help. For

various reasons (mostly financial) I haven't had any since early in

the year. I go to see my doc week after next. I need treatment

badly and hope that it helps. Magnesium IV's and/or shots. Use of a

sunbox in extended rainy, cloudy weather (sheesh - we could *use*

some rainy, cloudy weather right now and devil take the flareups!).

I take a vitamin D supplement and I've gotten more sun this year due

to my almost daily walks, so that offsets the need for the sunbox. I

take supplements. I take Celebrex for arthritis; if I don't take

it, after the third day or so I can't move. Whether that's arthritis

or fibro I don't know and don't really care. I recently started

taking Lunesta, which seems to help with sleep. My doc wants me to

go to a nutritionist to work with supplements, but as she charges >

$500 for the first visit, that isn't likely right now. I've finally

started putting the same level of research into fibromyalgia that I

did into weight loss surgery for a whole year before I had it, and am

coming up with a list of things to work on and try. I've started

doing yoga again - gently, occasionally, and adapted because of my

bionic knees and that I'm a heck of a lot older than I was when I did

it in the late 70's. ;D

Do you have sleep problems? How do you deal with it?

Yes. I had sleep apnea for years and was dx'd with narcolepsy five

times between 1965 and the 1990's; finally got dx'd with sleep apnea

and had the dx of narcolepsy disproved in 1999, and got a CPAP

machine. I haven't been retested since I'm at a near-normal weight;

the last study I had, I didn't sleep because of jerky legs. So I

didn't have waking episodes because I never got to sleep ::: banging

head on keyboard ::::. I don't use my CPAP anymore. When I was

tested in 1999, I had frequent waking episodes - like 17 in an hour.

Now, the biggest problems is leg spasms. I took Valium when I was

recovering from knee replacement (no, the knee replacement didn't

cause the spasms; I had them before) and it would help for about 4

hours. I recently started Lunesta after reading about the type of

sleep problems often found in ppl with fibro (I had an old

prescription). It either helps with the leg spasms or knocks me out

in spite of them, because I seem to be sleeping better. I talked to

the shrink who manages my meds, and she said " By all means, if it

helps! " and wrote me an RX. I resent the heck out of having to take

it, and it hasn't prevented flareups, but I think I'm sleeping better.

Do you have family that understands your illness?

Limited understanding from some; the rest have no frame of reference,

therefore, chronic illness doesn't exist.

Some have found certain foods causes problems with CFS or Fibro, have

you?

Yes. Sulfites, MSG, I refuse to mention sugar or potatoes. Equal

(manitol, sorbitol, etcetera-itol don't cause flareups; they just

cause diarrhea). I'm in denial about eggs, lamb and mushrooms (lamb

contains lanolin; I'm allergic to wool and lanolin)(though I don't

think lamb contains wool)(and I don't think lambs lay eggs)(now I'm

confused). I'm probably borderline allergic to a lot of food, but I

think I'm becoming more allergic to fish because the last time I ate

it my heart pounded, and I had a flareup. Lunch meat. Chemicals

(including those on or in food). Preservatives. Broccoli, brussels

sprouts, succotash - oops - sorry - no - they don't cause flareups; I

just don't like them. ;D

What type of Doctor have you found that has helped the most?

A very unusual MD who is also an osteopath. I call her my " thinks-

outside-the-box doc " .

I've been lurking for a couple of weeks, and even though a lot of

people seem to be having flareups at any one time, I'm tremendously

comforted that I'm not the only one flattened when a low-pressure

weather pattern moves through. I'm watching with interest posts

about Lyrica, although sometimes it seems like pounding oneself on

the foot with a hammer to distract one's attention from the pain in

the head.

Thanks for the support, all, even though you didn't realize you'd

been supporting me. :)

Z

zimmy2@...

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Congratulations on the weight loss, !! I'm glad that even though you

have been lurking that you were getting good information off of here. Thank

you for introducing yourself, because you just provided a lot of good

information.

Gentle hugs,

Debi/Ca.

CO-owner of _USMCLovedOnes4Support _

(http://USMCLovedOnes4Support /)

Proud and Blessed Mom of 3

Proud MIL of a Marine and a Swiss

Blessed Grandma to 6 and one Special Angel, he got his angel wings on

6/14/04 at only 6 days old. New baby, Gavin, born 8/05/06...hooray!!!!!!!!!

ASAP: Always Say a Prayer

PUSH: Pray Until Something Happens

God doesn't give us anything we can't handle, so have the same trust in

yourself that God does!!!!!!!!

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As for me and my house...we WILL serve the Lord.

Please check out Jamey's website at..._www.mingofamily.org_

(http://www.mingofamily.org/)

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Welcome to the group. Sounds like you found the right place.

Debra Van Ness

Zimmy wrote:

I've been lurking for a couple of weeks, and would like to introduce

myself if I may. There's an intro post format on another list that

I'd like to use if that's ok. Yes, I did post the same thing on the

other list. :)

Age range:

57

Male/female:

Female. Single. 36-36-36. Sign: Virgo. Likes quiche and romantic

walks in the - OOPS! - sorry. Heh heh heh. Wrong list. ;D ;D

What are the symptoms?

Frequent incidences of widespread, unexplained, generalized pain.

When asked " Where does it hurt " , the answer is " everywhere " . The

roots of my hair hurt, my fingernails hurt, it hurts to wear

clothing. The closest analogy is that it's like a fire deep under

my skin.

Has you illness been diagnosed?

Yes.

How long did you suffer before you got help?

I've been asking for help since 1961. Most of the time, it's been

" all in my head " . I came on an osteopathic practice about 21 years

ago with some exceptional doctors, who think outside the box. The

practice developed over the years into a clinic that specializes in

pain and " wimmen's issues " .

Is there a time that you can remember when it started?

1961. Sixth grade. I spent a week in the hospital for " unexplained

pain " . I've been trying to explain it ever since.

Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also?

I was overweight as a kid (didn't know how good I had it then, though

I had the life tormented out of me for being - horrors! 150 or so).

I was super morbidly obese for most of my adult life. 26 months ago

I had weight loss surgery (Duodenal Switch). It worked. Then

starting last November, I had one knee replaced, then the other end

of January. I can now walk two long blocks down, two over, and

back. I can actually go to the grocery store now. Amazing.

Are you on disability?

Yes.

If you are, any hints for others trying to get disability?

Not really.

I actually went out for three conditions: super morbid obesity,

degenerative knees, and fibromyalgia. I was pressured greatly by my

long term disability several months ago: since the obesity is

resolved and the knees are replaced, why can't I go back to work? I

was on the verge of having yet another surgery to repair an

incisional abdominal hernia that looked like a baby alien. I

absolutely freaked. My doc evaluated me, and wrote a letter to the

insurance co. explaining basically that three major surgeries within

six months of each other (not even including the weight loss surgery

in 2005, making four major surgeries in less than 2 years) had

severely depleted me and left me in a state of constant fibromyalgia

flareup. Basically, I feel like I don't have an endorphin left in my

body.

I don't know if I would have tried to go out on fibromyalgia alone,

but then, I've worked with fibromyalgia all of my life, as well as

obesity and degenerative knees, but it was just that the intertwined,

interconnected conditions got so bad back in 2005 that I couldn't

work anymore. Even with the resolution of the obesity and knees, I'm

still in pain from my knees (pain doesn't magically go away there

either; it's just different from feeling like I have size 4 knitting

needles jammed into my knee joints), and have frequent fibro

attacks. My recovery from both obesity and knee replacement depends

on my being physically active; I walk nearly every day, and try to do

things around my property. But going to the pool, like I did this

summer - I'm allergic to chlorine, which triggers flareups, and

exercise usually triggers flareups. When I take a long walk,

especially in this miserable endless Indian summer weather, that's

pretty much it for the day. I worked on painting trim on my house

for a couple of hours earlier in the week. You guessed it:

flareup. Theoretically, " limited " gentle exercise should make it

possible to preclude exercise-related flareups, but I haven't yet

figured out which minute at any particular time on any particular day

is the one that will trigger the flareup. And I have flareups

anyway: theoretically, Monday should have been a " good " day - clear,

high pressure weather, fairly cool. I had a major flareup anyway.

In any case, my level of exercise right now is determined by what my

muscles and my knees need, not by what will prevent a flareup. I

know darned well that if I go back to work at this point, I will not

be able to exercise. My new bionic knees simply will not tolerate

that. I didn't go through the last 26 months to let it slip away.

Add to that the stress of working, and that cubicles don't usually

come with couches, or jobs with afternoon naps...

Social Security has yet to bug me about going back. I suspect that I

may have a fight when they do; on the other hand, maybe with

treatment I can get back to work soon. Like I said, I worked for

many years with multiple problems; I just need to be able to work

with one now. Should be a piece of cake (HAH! RIGHT!).

What have you found that helps ease the pain, warm baths, medications

etc.?

Treatments like osteopathic manipulation and acupuncture help. For

various reasons (mostly financial) I haven't had any since early in

the year. I go to see my doc week after next. I need treatment

badly and hope that it helps. Magnesium IV's and/or shots. Use of a

sunbox in extended rainy, cloudy weather (sheesh - we could *use*

some rainy, cloudy weather right now and devil take the flareups!).

I take a vitamin D supplement and I've gotten more sun this year due

to my almost daily walks, so that offsets the need for the sunbox. I

take supplements. I take Celebrex for arthritis; if I don't take

it, after the third day or so I can't move. Whether that's arthritis

or fibro I don't know and don't really care. I recently started

taking Lunesta, which seems to help with sleep. My doc wants me to

go to a nutritionist to work with supplements, but as she charges >

$500 for the first visit, that isn't likely right now. I've finally

started putting the same level of research into fibromyalgia that I

did into weight loss surgery for a whole year before I had it, and am

coming up with a list of things to work on and try. I've started

doing yoga again - gently, occasionally, and adapted because of my

bionic knees and that I'm a heck of a lot older than I was when I did

it in the late 70's. ;D

Do you have sleep problems? How do you deal with it?

Yes. I had sleep apnea for years and was dx'd with narcolepsy five

times between 1965 and the 1990's; finally got dx'd with sleep apnea

and had the dx of narcolepsy disproved in 1999, and got a CPAP

machine. I haven't been retested since I'm at a near-normal weight;

the last study I had, I didn't sleep because of jerky legs. So I

didn't have waking episodes because I never got to sleep ::: banging

head on keyboard ::::. I don't use my CPAP anymore. When I was

tested in 1999, I had frequent waking episodes - like 17 in an hour.

Now, the biggest problems is leg spasms. I took Valium when I was

recovering from knee replacement (no, the knee replacement didn't

cause the spasms; I had them before) and it would help for about 4

hours. I recently started Lunesta after reading about the type of

sleep problems often found in ppl with fibro (I had an old

prescription). It either helps with the leg spasms or knocks me out

in spite of them, because I seem to be sleeping better. I talked to

the shrink who manages my meds, and she said " By all means, if it

helps! " and wrote me an RX. I resent the heck out of having to take

it, and it hasn't prevented flareups, but I think I'm sleeping better.

Do you have family that understands your illness?

Limited understanding from some; the rest have no frame of reference,

therefore, chronic illness doesn't exist.

Some have found certain foods causes problems with CFS or Fibro, have

you?

Yes. Sulfites, MSG, I refuse to mention sugar or potatoes. Equal

(manitol, sorbitol, etcetera-itol don't cause flareups; they just

cause diarrhea). I'm in denial about eggs, lamb and mushrooms (lamb

contains lanolin; I'm allergic to wool and lanolin)(though I don't

think lamb contains wool)(and I don't think lambs lay eggs)(now I'm

confused). I'm probably borderline allergic to a lot of food, but I

think I'm becoming more allergic to fish because the last time I ate

it my heart pounded, and I had a flareup. Lunch meat. Chemicals

(including those on or in food). Preservatives. Broccoli, brussels

sprouts, succotash - oops - sorry - no - they don't cause flareups; I

just don't like them. ;D

What type of Doctor have you found that has helped the most?

A very unusual MD who is also an osteopath. I call her my " thinks-

outside-the-box doc " .

I've been lurking for a couple of weeks, and even though a lot of

people seem to be having flareups at any one time, I'm tremendously

comforted that I'm not the only one flattened when a low-pressure

weather pattern moves through. I'm watching with interest posts

about Lyrica, although sometimes it seems like pounding oneself on

the foot with a hammer to distract one's attention from the pain in

the head.

Thanks for the support, all, even though you didn't realize you'd

been supporting me. :)

Z

zimmy2@...

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