Life for FMS/CFS Sufferers

[Guest guest]

Group I would like you honest opinion/thoughts on what kind of life you lead and

what your biggest setbacks are due to the above diagnosises and the meds you

take daily. Most of all what drives you day to day. If you prefer you may

email me privatly.

Thank you and gentle hugs,

RAB

Sent from my Verizon Wireless BlackBerry

[Guest guest]

RAB....

Well I can answer this easily.

What kind of life do I lead? I choose to lead a life that's filled with

happiness and love, good times, I'm a housewife, due to being ill so much.

But that was something I chose, not forced to do. I could have continued to

work, but my hubby and I talked it over, and he preferred that I stay home

and take care of myself and my son (when he was at home with us, he's out

and married now).

My biggest setbacks are not getting to go out whenever I want shopping, or

gardening, or site-seeing, traveling. I still keep my home clean, meals

cooked, except on my really bad days. I'm still a loving wife, who still

enjoys a very healthy and active sex-life ( my RA doc told me that sex in

the BEST thing for pain relief from fibromyalgia, he has it himself) and he

was right. You get anywhere from 1/2 to 2 hours of no pain after sex...at

least I do. Has something to do with the neurotransmittors and such. I don

t get to walk my doggies like I would like to, cause some days the pain is

too much. I didn't get to continue being a real estate agent, cause theres a

lot of stress at a job like that.

Meds I take daily... Tramadol, Zoloft, and Norvasc. That's it. I was on a

lot more meds, but I took myself off of them. I needed to feel human and

alive and able to function.

What drives me day to day? Knowing that I have a son who loves me, a husband

that puts me before anything in this world, friends who love me although

they don't understand me at times, family, and my animals....but most of all

my need to live, to be...even with my pain, I look forward to another day.

Another day of seeing my son or my hubby smile, another day of my pets

coming to me for lovins...another day for me to help someone, which I try to

do daily...whether it be something small or whatnot.

That's me...and that's my life.

K.

-- Life for FMS/CFS Sufferers

Group I would like you honest opinion/thoughts on what kind of life you lead

and what your biggest setbacks are due to the above diagnosises and the meds

you take daily. Most of all what drives you day to day. If you prefer you

may email me privatly.

Thank you and gentle hugs,

RAB

Sent from my Verizon Wireless BlackBerry

1. While it is wonderful to share our experiences with everyone on the list

as to what treatments do and don't work for us, pls always check with your

dr. Some treatments are dangerous when given along with other meds as well

as to certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't

be afraid to ask for help. It is the first step to trying to make that

situation better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at

the same time when it comes to flares and b/c of that potentially take

something another member says the wrong way. And that includes the things

that one member may find funny (even if it's laughing at fibro itself) even

though we who deal with illness whether one such as fibro or multiple

illnesses try to keep a sense of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls

let us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

I too choose a life of happiness, with lots of love, understanding and I try to

make the most of the day I am given. Some days better than others. I miss out on

many things I use to be able to do easily, but I have learned to adjust. I have

fibro, but it doesn't have me. My life is not the most glamorous. I am a " stay

at home " mom, in a marriage that has been over many years now, but we are still

together and I live most days in extreme pain. I still try to do things that

make me happy, like gardening, crafts, helping others, etc. I guess I take it

one day at a time, one moment at a time. Only thing that keeps me sane. we have

to make the most out of what we are given. That is how I feel. No matter how bad

it may get, it makes us stronger. Ok enough ramblings, lol. Fibro fog.

Hugs,

LadyMoonkist wrote:

RAB....

Well I can answer this easily.

What kind of life do I lead? I choose to lead a life that's filled with

happiness and love, good times, I'm a housewife, due to being ill so much.

But that was something I chose, not forced to do. I could have continued to

work, but my hubby and I talked it over, and he preferred that I stay home

and take care of myself and my son (when he was at home with us, he's out

and married now).

My biggest setbacks are not getting to go out whenever I want shopping, or

gardening, or site-seeing, traveling. I still keep my home clean, meals

cooked, except on my really bad days. I'm still a loving wife, who still

enjoys a very healthy and active sex-life ( my RA doc told me that sex in

the BEST thing for pain relief from fibromyalgia, he has it himself) and he

was right. You get anywhere from 1/2 to 2 hours of no pain after sex...at

least I do. Has something to do with the neurotransmittors and such. I don

t get to walk my doggies like I would like to, cause some days the pain is

too much. I didn't get to continue being a real estate agent, cause theres a

lot of stress at a job like that.

Meds I take daily... Tramadol, Zoloft, and Norvasc. That's it. I was on a

lot more meds, but I took myself off of them. I needed to feel human and

alive and able to function.

What drives me day to day? Knowing that I have a son who loves me, a husband

that puts me before anything in this world, friends who love me although

they don't understand me at times, family, and my animals....but most of all

my need to live, to be...even with my pain, I look forward to another day.

Another day of seeing my son or my hubby smile, another day of my pets

coming to me for lovins...another day for me to help someone, which I try to

do daily...whether it be something small or whatnot.

That's me...and that's my life.

K.

-- Life for FMS/CFS Sufferers

Group I would like you honest opinion/thoughts on what kind of life you lead

and what your biggest setbacks are due to the above diagnosises and the meds

you take daily. Most of all what drives you day to day. If you prefer you

may email me privatly.

Thank you and gentle hugs,

RAB

Sent from my Verizon Wireless BlackBerry

1. While it is wonderful to share our experiences with everyone on the list

as to what treatments do and don't work for us, pls always check with your

dr. Some treatments are dangerous when given along with other meds as well

as to certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't

be afraid to ask for help. It is the first step to trying to make that

situation better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at

the same time when it comes to flares and b/c of that potentially take

something another member says the wrong way. And that includes the things

that one member may find funny (even if it's laughing at fibro itself) even

though we who deal with illness whether one such as fibro or multiple

illnesses try to keep a sense of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls

let us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

My life is as full as possible, despite my many diseases/conditions.

We are back on land, living in a little house on a canal, with our

boat out back. I've taken a break from working on our boat this

winter, with unpacking and cleaning the house (very dirty from prior

tenant and owner's tile project in kitchen and bath). Then a very bad

case of flu sidelined me, but thankfully we were already moved in and

I could just go to bed.

On the upside, we look forward to finishing the boat for cruising

later on. I got A/C this year (remember this IS south FL). And we

have refrigeration here to install. I'll be living the life of

luxury, lol, after buying ice daily for the last several years in

order to have refrigerated food.

Because of my other diseases, I have many other physical discomforts

to add to the pain. With my lung disease, I have low

exercise/activity tolerance. With the arthritis and congenital hip

displaysia I live with chronic pain from my failing joints. Nothing

hurts like bone-on-bone when one's hip cartilege is gone. I guess

that's how I tolerate the fibro pain so well. I have the joint pain

as well as the muscle/tendon fibro pain. And then there's the loss of

body image from the upper-body weight gain due to prednisone use for

the lung disease. I look in the mirror and think, who IS that

person?! But it's only a shell, not who the real me is. The real me

is mom, spouse, grandma, sister, aunt, and friend. I still enjoy

sailing, gardening (in pots now that I'm in a rental house), evenings

with friends, hosting dock parties, traveling to visit relatives. I'm

not working as I've got major memory problems from meds and low

oxygen at times, which has taken away my ability to perform in my

accounting profession. So I gotta fill my life with other ways to

keep up my self-worth. Without friends, family, and substituting lots

of activities and living for my stolen livelihood, I'd be toast.

I refuse to be sidelined in bed or a wheelchair. When I travel, I get

wheelchair assist (with limited success) at airports, as I cannot

walk with a cane, carry a bag of medicine, purse, and bipap machine.

Way too heavy and can't walk very far. But the law says the airlines

and airports have to remove the barriers to me being able to travel,

so I just force the issue with them. Last flight out of Fort

Lauderdale and back was disastrous, with them failing to provide any

wheelchair assist or handicap accommodations for me. I've written

letters, and they know their butts are on the line on this one, as I

was forced to locate a manual wheelchair when I deplaned and try to

put all my belongings on my lap and wheel through the airport with my

own arms. Needless to say everything kept falling off my lap, and

with a floppy heart valve and 50% lung function, I had a terrible

time just moving the wheels with my hands. Not a single airport

employee would get me wheelchair assist or provide a helping hand. I

finally reclaimed my checked bag 1 1/2 hours after I deplaned, in an

unattended hallway. So much for our country having decent souls in

the travel industry. Arg

But I will travel again and I'll try and keep a copy of the regs in

my purse to shove in their faces next time!

girlsaylor

From: raburtongdyr@...

> Date: 1/5/2008 5:27:01 AM

> To: fibromyalgia_support_gr

> Subject: Life for FMS/CFS Sufferers

>

> Group I would like you honest opinion/thoughts on what kind of life

you lead

> and what your biggest setbacks are due to the above diagnosises and

the meds

> you take daily. Most of all what drives you day to day. If you

prefer you

> may email me privatly.

>

> Thank you and gentle hugs,

>

> RAB

> Sent from my Verizon Wireless BlackBerry

>

>

>

> 1. While it is wonderful to share our experiences with everyone on

the list

> as to what treatments do and don't work for us, pls always check

with your

> dr. Some treatments are dangerous when given along with other meds

as well

> as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is)

pls don't

> be afraid to ask for help. It is the first step to trying to make

that

> situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be feeling

bad at

> the same time when it comes to flares and b/c of that potentially

take

> something another member says the wrong way. And that includes the

things

> that one member may find funny (even if it's laughing at fibro

itself) even

> though we who deal with illness whether one such as fibro or

multiple

> illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad

day pls

> let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

>