Re: Family & Fibro....AIMEE

[Guest guest]

>

>Hi Aimee,

I honestly don't know what to tell you. I guess if you want to keep

peace and not get upset...if anyone asks you how you are...just be

casual about it. It certainly isn't right, but...I have a family, but

sister is nuts and I was " voted off the family " four years ago and I

figure it's their loss...so it will be just (hubby) and I.

Good luch, sweetie.

/Mi

[Guest guest]

Pardon me, but how in the blue blazes does one get voted off a family, your own

family!??

I go through a lot of pain and heavy fatigue. My dear wife, who really is a

good helper to me when I'm facing severe pain or fog. Still, she forgets

because, as she says, you hold the pain in well. I spent two years in combat

running deep recon patrols. Out there in enemy-land, you sucked up the pain or

you will most likely die by giving away your position. I know because in one op

I hyperextended my left knee and caused so much damage that I couldn't even walk

on it. It took nearly a week to get us out (6 days after insertion), and another

two months before I could walk without crutches or cane.

So, unless I make it really clear how I'm doing, what my pain level is, how

fatigued I feel, and how foggy my head is, she simply sees me and thinks I'm

doing great.

I think what helped her to finally understand the pain was to ask her what the

pain was like when she gave birth to our son. She said she really couldn't

remeber it clearly, but she remembered that it was very painful. I said, " Okay,

hon, imagine that pain in the center of your back, not just once a year, but for

days in a row. Or imagine that pain all over your body for prolonged periods of

time. Imagine suddenly not remembering things that you know that you know, but

you can't remember, like the word " next. " That was one of those fun days when

the word disappeared on me. Or the day when you and I went to lunch, we ordered

and then I went to the car to get a catalog I wanted to show you. Between the

time I left and the time I got back, I was in a real fog. My words came out

weird, I couldn't remember what I had wanted to do. Shoot, Hon, I couldn't even

remember that I had eaten! "

Well, that helped, and every now and then, I remind her gently that my world

is no longer normal and natural, by her standards or that of most people. All of

this fibro mess and PTSD from my time in combat -- folks, this roller-coaster is

a hard ride at times.

So, add my to your support lists. And if you will permit me, I will pray for

anyone who wants my prayers.

The one thing I have learned to do is to go to my hidey-hole and get alone

with my own thoughts. I am blessed in that my kids are all grown and have kids

of their own. More, they all live back east while I live in the great northwest

(N. ID). So, I've taken over the smallest bedroom and turned it into my space,

my man cave, as it were. I have several hundred books in here, my new computer,

my TV, and most of the DVDs and VHSs that are worth watching. My wife does come

in to keep me company from time to time, which is fine.

Before this, we lived in the one bedroom cabin that I built out here. That made

things a bit tougher, but when there wasn't 6-feet of snow on the ground, I'd go

for a walk during the daylight.

Anyway, just remember this -- no one knows what you are going through except

maybe another person with fibro. While I need some friends to walk with me, I

love those who are walking under a similar load and like walking with them.

Kindest regards,

Gene

uniceander wrote:

>

>Hi Aimee,

I honestly don't know what to tell you. I guess if you want to keep

peace and not get upset...if anyone asks you how you are...just be

casual about it. It certainly isn't right, but...I have a family, but

sister is nuts and I was " voted off the family " four years ago and I

figure it's their loss...so it will be just (hubby) and I.

Good luch, sweetie.

/Mi

[Guest guest]

How do you get voted off a family? That's easy. Just open your mouth and

say you hurt.

Tigger (Ruth) in Rhode Island

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of Gene Gross

Sent: Monday, March 17, 2008 8:21 PM

To: Fibromyalgia_Support_Group

Subject: Re: Re: Family & Fibro....AIMEE

Pardon me, but how in the blue blazes does one get voted off a family, your

own family!??

I go through a lot of pain and heavy fatigue. My dear wife, who really is a

good helper to me when I'm facing severe pain or fog. Still, she forgets

because, as she says, you hold the pain in well. I spent two years in combat

running deep recon patrols. Out there in enemy-land, you sucked up the pain

or you will most likely die by giving away your position. I know because in

one op I hyperextended my left knee and caused so much damage that I

couldn't even walk on it. It took nearly a week to get us out (6 days after

insertion), and another two months before I could walk without crutches or

cane.

So, unless I make it really clear how I'm doing, what my pain level is, how

fatigued I feel, and how foggy my head is, she simply sees me and thinks I'm

doing great.

I think what helped her to finally understand the pain was to ask her what

the pain was like when she gave birth to our son. She said she really

couldn't remeber it clearly, but she remembered that it was very painful. I

said, " Okay, hon, imagine that pain in the center of your back, not just

once a year, but for days in a row. Or imagine that pain all over your body

for prolonged periods of time. Imagine suddenly not remembering things that

you know that you know, but you can't remember, like the word " next. " That

was one of those fun days when the word disappeared on me. Or the day when

you and I went to lunch, we ordered and then I went to the car to get a

catalog I wanted to show you. Between the time I left and the time I got

back, I was in a real fog. My words came out weird, I couldn't remember what

I had wanted to do. Shoot, Hon, I couldn't even remember that I had eaten! "

Well, that helped, and every now and then, I remind her gently that my world

is no longer normal and natural, by her standards or that of most people.

All of this fibro mess and PTSD from my time in combat -- folks, this

roller-coaster is a hard ride at times.

So, add my to your support lists. And if you will permit me, I will pray for

anyone who wants my prayers.

The one thing I have learned to do is to go to my hidey-hole and get alone

with my own thoughts. I am blessed in that my kids are all grown and have

kids of their own. More, they all live back east while I live in the great

northwest (N. ID). So, I've taken over the smallest bedroom and turned it

into my space, my man cave, as it were. I have several hundred books in

here, my new computer, my TV, and most of the DVDs and VHSs that are worth

watching. My wife does come in to keep me company from time to time, which

is fine.

Before this, we lived in the one bedroom cabin that I built out here. That

made things a bit tougher, but when there wasn't 6-feet of snow on the

ground, I'd go for a walk during the daylight.

Anyway, just remember this -- no one knows what you are going through except

maybe another person with fibro. While I need some friends to walk with me,

I love those who are walking under a similar load and like walking with

them.

Kindest regards,

Gene

uniceander <Lander2004 (AT) comcast (DOT) <mailto:Lander2004%40comcast.net> net>

wrote:

>

>Hi Aimee,

I honestly don't know what to tell you. I guess if you want to keep

peace and not get upset...if anyone asks you how you are...just be

casual about it. It certainly isn't right, but...I have a family, but

sister is nuts and I was " voted off the family " four years ago and I

figure it's their loss...so it will be just (hubby) and I.

Good luch, sweetie.

/Mi

[Guest guest]

Hi Folks,

I was not denying that she experienced this -- and yes, I do know what it is

like to get voted off a family. I am the oldest of seven kids. When I joined the

Army back in 1963, my parents' turned their Jehovah's Witnesses back on me. To

make matter worse, my first wife went to live with my parents while I was going

through the last months of my enlistment. My mother helped convert my wife and I

ended up losing her and our son, too.

I simply wasn't expecting to hear that families could be cruel like that over an

illness. Then again, why shouldn't they be like that. We look normal. We don't

look sick. It took my wife some time to cotton to the idea that tho' I looked

fine as frog's hairs I wasn't. She learned that the pain from the fibro wasn't

limited to joints and connective tissues, but that my skin could often be very

sensitive to even the lightest touch. I will never forget that first time when

she touched my ankle -- I nearly passed out from the pain. Believe me when I say

that I'm no stranger to pain, and severe pain at that. Remember I was shot, was

hit in the abdomen by RPG (Rocket Propelled Grenade -- the favorite VC weapon)

fragments, and blown out of a bunker -- not to mention being on two choppers

that were shot down.

The thing about all of that is that there was an eventual end to the pain, and

most of the meds for pain could help diminish the pain related to such injuries

and wounds. However, when I first started having to deal with fibro related

pain, I found that asprin and ibuprofen did little to nothing to alleviate the

pain. I ended up taking oxycodone for about 4 years. At one point, I experienced

chest pain, which I ignored as I thought it was due to all the stuff they had

done to me during the bypass. Long story short: one of the bypasses failed, but

in its place thousands of new, smaller arteries had grown in and were more than

amply feeding my heart. The doctors told me that they had seen arteries grow

back, but nothing like what my body and heart had done. They took a bunch of

x-rays, CAT scans, photos of the dye-laced blood flowing into and around my

heart and then out again, and they did enough stress tests to last me for 100

lifetimes.

Ever since then, I have thanked God for every day I have -- days that I would

not have had without Him.

Still, I deal with the fibro and the pain, mental fogginess, shakiness, and

other problem that go with being a fibro patient.

But to me, turning someone out of their family due to the fibro is such an

affront to me. I do feel considerable empathy with /Mi. Just don't go

around telling too many people that Staff Sergeant Gross is a sweet heart or a

nice guy -- first they won't believe you and second I have a rep, don'cha know!

On a more serious note, I would like to create lists of medications and

supplements people are taking for their fibromyalgia and the dosage levels of

each; e.g., Morphine SA 15 mg x 2; Wellbutrin XL 200 mg x 2. To make this work,

I will also need to know how you fibro manifests itself. Example, a teacher

friend of mine cannot handle any strong colognes or perfumes. I on the other

hand do not have trouble with any thing except true florals (Tea Rose is one). I

will then create the list in either Access or Excel. The biggest concern I have

is names getting out, so I urge that names be forbidden (that way if someone

else takes over working on the list everyone will be highly confident that no

names are attacked to the listing). Another way to work this is to send the med

information to say the list moderator who then strips out the names and forwards

the info to me.

I frankly think that this would be of great help to all of us. Someone may be

having a very hard time of it and will read the list and find something that

they either didn't know about or didn't know that it was helping. They could

then try it (especially if it is a supplement) to see if it helps them. Or,

someone could read it and share their experiences with that supplement.

Up to you guys.

En agape tou Iesous,

Gene

[Guest guest]

What a powerful post. Your story moved me out of hibernation,

and made me proud to be counted among such strong people.

I just wanted to say that your idea for a list of meds and

supplements or treatments is a wonderful idea. I'd be very

interested to have something like that as a resource of REAL

experience.

I've used neurontin and lyrica, with no improvement, and many

side effects. I no longer use either one. I seem to be extremely

sensitive to meds period. I'm currently on Cymbalta which is

supposed to have some benefit for the fibro sufferer. I didn't

really know if I was experiencing anything positive at first,

until I missed a few doses and found myself weeping like crazy

in despair over my seemingly hopelessly pain filled life.

I try never to miss a dose now.

My doc recently prescribed xanax for the severe anxiety that

seems to go with this disease. At least for me, it does.

Ok thats my two cents, and thanks again for sharing so sincerely.

Donna

aka stoneysgramma

So

> Hi Folks,

>

> I was not denying that she experienced this -- and yes, I do know

what it is like to get voted off a family. I am the oldest of seven

kids. When I joined the Army back in 1963, my parents' turned their

Jehovah's Witnesses back on me. To make matter worse, my first wife

went to live with my parents while I was going through the last months

of my enlistment. My mother helped convert my wife and I ended up

losing her and our son, too.

>

> I simply wasn't expecting to hear that families could be cruel like

that over an illness. Then again, why shouldn't they be like that. We

look normal. We don't look sick. It took my wife some time to cotton

to the idea that tho' I looked fine as frog's hairs I wasn't. She

learned that the pain from the fibro wasn't limited to joints and

connective tissues, but that my skin could often be very sensitive to

even the lightest touch. I will never forget that first time when she

touched my ankle -- I nearly passed out from the pain. Believe me when

I say that I'm no stranger to pain, and severe pain at that. Remember

I was shot, was hit in the abdomen by RPG (Rocket Propelled Grenade --

the favorite VC weapon) fragments, and blown out of a bunker -- not to

mention being on two choppers that were shot down.

>

> The thing about all of that is that there was an eventual end to the

pain, and most of the meds for pain could help diminish the pain

related to such injuries and wounds. However, when I first started

having to deal with fibro related pain, I found that asprin and

ibuprofen did little to nothing to alleviate the pain. I ended up

taking oxycodone for about 4 years. At one point, I experienced chest

pain, which I ignored as I thought it was due to all the stuff they

had done to me during the bypass. Long story short: one of the

bypasses failed, but in its place thousands of new, smaller arteries

had grown in and were more than amply feeding my heart. The doctors

told me that they had seen arteries grow back, but nothing like what

my body and heart had done. They took a bunch of x-rays, CAT scans,

photos of the dye-laced blood flowing into and around my heart and

then out again, and they did enough stress tests to last me for 100

lifetimes.

>

> Ever since then, I have thanked God for every day I have -- days

that I would not have had without Him.

>

> Still, I deal with the fibro and the pain, mental fogginess,

shakiness, and other problem that go with being a fibro patient.

>

> But to me, turning someone out of their family due to the fibro is

such an affront to me. I do feel considerable empathy with /Mi.

Just don't go around telling too many people that Staff Sergeant Gross

is a sweet heart or a nice guy -- first they won't believe you and

second I have a rep, don'cha know!

>

> On a more serious note, I would like to create lists of medications

and supplements people are taking for their fibromyalgia and the

dosage levels of each; e.g., Morphine SA 15 mg x 2; Wellbutrin XL 200

mg x 2. To make this work, I will also need to know how you fibro

manifests itself. Example, a teacher friend of mine cannot handle any

strong colognes or perfumes. I on the other hand do not have trouble

with any thing except true florals (Tea Rose is one). I will then

create the list in either Access or Excel. The biggest concern I have

is names getting out, so I urge that names be forbidden (that way if

someone else takes over working on the list everyone will be highly

confident that no names are attacked to the listing). Another way to

work this is to send the med information to say the list moderator who

then strips out the names and forwards the info to me.

>

> I frankly think that this would be of great help to all of us.

Someone may be having a very hard time of it and will read the list

and find something that they either didn't know about or didn't know

that it was helping. They could then try it (especially if it is a

supplement) to see if it helps them. Or, someone could read it and

share their experiences with that supplement.

>

> Up to you guys.

>

> En agape tou Iesous,

>

> Gene

>

>