Ventilating

[Guest guest]

I understand your feelings, Phil.My adult children di not see my pain and

therefore assume I am fine, though I am always in pain of varying

degrees.Fortuneately, they don't live in my State but i feel i need to act happy

on the

phone to cheer them up and I am tired of not being able to vent myself.Thank

you.i believe in God and " this too will pass' your friend in pain .Cat

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[Guest guest]

I'm sorry about this, I just need to talk, to make a statement.

I am in pain, I am not coping, no matter what cheerful, or semi-grimaced, face I

force myself to wear for the world.

I cannot cope, the simplest everyday things throw me, a formerly capable chap,

into a total dither.

Somewhere I feel I need to tell the truth, and I'm afraid that place is here.

Not in my church, not to my long-suffering family and wonderful wife.

I feel that I'm just expected to cope with whatever I'm presented with, and the

truth is that I am not.

Tomorrow, I will try and be more constructive, but for now, I will persevere to

get through to tomorrow.

Thank you for listening.

For those who believe, God bless,

For those who don't may life treat you well.

Phil

[Guest guest]

Phil,

I used to feel this way every day. I didn't want to burden my friends, family,

or husband either. They never knew what to say and quite frankly I'm not sure

what I wanted to hear.

I started going to a therapist, a neutral party, and she helped me tremendously.

It was great to have someone to talk to about every little thing. She also

helped me feel more empowered to cope with the everyday stuff and in dealing

with all the Doctors and their conflicting opinions. I highly recommend it.

Good luck Phil and I hope you are feeling better today. Everyone feels this way

from time to time (like they can't cope) and its good to vent. Please seek help

if things get worse for you.

Caitlin

Moderator

P D wrote:I am in pain, I am not coping, no matter

what cheerful, or semi-grimaced, face I force myself to wear for the world.

I cannot cope, the simplest everyday things throw me, a formerly capable chap,

into a total dither. I feel that I'm just expected to cope with whatever I'm

presented with, and the truth is that I am not.

[Guest guest]

I totally hear you, really I do, I get so tired of well meaning people asking me

how I feel and if it still hurts. You know they mean well and sometimes I smile

and say, it's not any worse " but, excuse my language, it just sucks to hurt all

the time.

>Phil wrote:

>Somewhere I feel I need to tell the truth, and I'm afraid that place is here.

Not in my church, not to my long-suffering family and wonderful wife.

>I feel that I'm just expected to cope with whatever I'm presented with, and the

truth is that I am not.

[Guest guest]

Phil,

I hear you and understand perfectly well the message and private emotions you so

truthfully reveal.

Believe this: You are not alone. Talking to people who understand gives

strength from some place deep inside. After all, we are all human, but we

chronic pain survivors are in a unique group, regardless of where the pain

originates. We still feel more of the same emotions that the " regular "

population seem to experience more temporarily. To suffer daily with little or

no relief brings us together here and I'm glad you are able to talk openly.

Sincerely,

Jennette

P D wrote: I'm sorry about this, I just need to

talk, to make a statement.I am in pain, I am not coping, no matter what

cheerful, or semi-grimaced, face I force myself to wear for the world.I cannot

cope, the simplest everyday things throw me, a formerly capable chap, into a

total dither.

[Guest guest]

Phil,

I so understand your grief. As I think most of us do. I have been feeling very

good for the last 3 weeks. My pain levels have been low and I've actually been

able to do things with my family that have been long coming.

Until yesterday, I hurt so bad that I actually couldn't get out of bed. My son

had a spring football game at school and then when it was the high schools turn

he would play in the band. I wanted to go watch him so badly but just could not

do it. I tried to get dressed and finally told my husband there was just no

way. Well, I guess because I have been doing so well lately my whole family got

mad at me. They even accused me of being lazy. Of course I started crying and

went back to bed.

Later that night my son had a baseball game (he does everything) so I made

myself get up and go. I was in horrible pain the entire time and I think my

family could see it on my face because they apologized for being so rude about

me not feeling well.

I told them all that there are days when I feel good and then there will be days

that I don't. I asked them to please bare with me and do not judge me on my bad

days. It hurts my feelings and I feel like they don't believe me when I am in

pain. I told them that I would hate for any of them to live a day in my shoes

but if that's what it took for them to understand what was going on with me then

maybe God should intervene just one time when my pain is at a 9 or 10.

Does that sound mean? I really deep down do not wish that but when they act

like that and I'm in pain I do get a little spiteful. haha

Hang in there Phil, and this is the place to come when you want to vent, have

friends who understand, or just want to talk. Never feel like your being a

burden for venting here. That's one of the reasons that I feel like this group

was designed for. So please, jump in and talk all you want.

Hugs & Prayers,

Carol (OK)

I am in pain, I am not coping, no matter what cheerful, or

> semi-grimaced, face I force myself to wear for the world.

> I cannot cope, the simplest everyday things throw me, a

> formerly capable chap, into a total dither.

>

[Guest guest]

>

> I am in pain, I am not coping, no matter what cheerful, or

> > semi-grimaced, face I force myself to wear for the world.

> > I cannot cope, the simplest everyday things throw me,

> > formerly capable chap, into a total dither.

Aloha Phil!

I've been in severe chronic pain for over 11 years now and during the

first 7 years or so, I was very active with trying to help members in

any way I could. However and this is just me and my opinion, because so

many years have gone by and nothing in medical technology is on the

horizon that can fix me yet, I've become quite exasperated (to say the

least!)

I was very naive during the first 3-4 years after my lumbar discs

herniated due to not having to see a doctor often because I was always a

healthy man, never broke a bone until I was 36 and never needed surgery

except for appendicitis when I was just 2 years old! I was one of those

that took the words from the mouths of doctors (almost)as if none of

them could (or would) lie to me due to the faith that people would need

to have in them in order to do some of the procedures, tests and

surgeries they recommend.

Unfortunately or fortunately, depending on ones point of view, I had

surgeons more interested in just how much they could " milk " my insurance

company for rather than fix my spine. As some here know, I have lived in

Hawaii since 1989 and even though no doctor here will admit to it, there

are strong rumors/gossip/facts about the medical profession here. It

seems that quite a few of the doctors have moved here for other reasons

besides the sun, sand and surf. Some have been discovered to be running

away from malpractice suits from practices they had on the mainland. It

isn't so bad now since the computer age has arrived, however, many folks

used to try to run from all sorts of " legal problems " that they had.

Most got away with it too! My 29 year career 'was' an Accountant and

some " shady characters " around here have personally asked me

what would happen to them if the IRS ever caught up with them. Well, my

island of Kauai isn't as remote or " far away " as it used to be for the

first 10 years or so that I lived here. Thankfully, those types of

people don't try to " run and hide " over here as much anymore. Long story

short: I didn't even think about if a doctor was a good or bad doctor

from 1997-2001, when I had all of my surgeries.

If you haven't guessed by now, all 3 were miserable failures. I was

actually so 'green around the gills' as a serious patient that when I

was first told that I had herniated discs, I simply shrugged my

shoulders and didn't think it was any big deal and that my regular

doctor could fix it as easy as she could a sore throat or sinus

infection! Well, I started to wise up after the 2nd surgery (the

anterior fusion with the titanium cage using bone " harvested " from my

left hip - of which the surgeon failed to tell me!

To shorten this up and get to your main concern Phil, I was still in so

much pain but luckily I had, which I later found out from others at the

hospitals clinic, the very BEST doctor for my pain management. Thanks to

him and his willingness to work with me, we eventually found the " magic

bullet " or perfect dosages of various meds so I was able to continue

working for an additional 8 years. Then, my pain got so bad that the

dosage of meds needed to reduce my pain is now quite high. I could no

longer work for an employer or my own business (which I did as a last

ditch effort and was successful at it for almost 3 years) because severe

pain made it impossible for me to think or concentrate. My mind

literally couldn't stay on anything else BUT the pain. If not that,

the dosage required to reduce the pain made it impossible for me to do

just about ANY accounting correctly! It was a nasty " catch-22 " and it

happened much too soon for me to take (January 2005). I really thought

from the way the surgeons and my pain management doctor sounded, I'd be

near retirement age by the time that would happen or I'd even have

to start thinking/worrying (?) about it. Unfortunately, it happened and

I was only 49 1/2.

I ended up having the one and only nervous breakdown of my life from

January to June 2005 thanks to several factors. Some of them, but not

all, include what you have written about, my depression that was (more

or less) under control, that my 26 year marriage may crumble at any time

with the addition of not bringing in half the income, plus the ugly,

UGLY fact that every single one of MY and/or OUR future plans had been

completely wiped off the 'drawing board'. In fact, plans of ANY TYPE

were now almost impossible to make (I've even had to cancel and

reschedule doctor and psychiatrist appointments due to pain flare-ups,

better known as 'breakthrough pain').

I thank God several times daily that I managed to find and marry a woman

who is willing to " bear with me " for an indefinite amount of time.

Shortly after joining a few CP support groups back in the late 90's, I

quickly learned just how fortunate I am as I've read far too many

marriages break up because one spouse or the other had become disabled.

I was really getting " information overload " once it became clear that I

wasn't going to be able to get " fixed " any time soon. I didn't bother to

even START to believe such a thing was even possible in my life as what

has transpired during the last 11 (and counting) years. Had someone told

me the morning I woke up with an " unusual feeling " backache that in 8

years I'd be unable to work, be put on social security disability

insurance and be pronounced permanently disabled at the age I was then

(41!!), I'd not only have laughed the person out of the room but also

spit on him/her and never spoken to them again! Never in my wildest

dreams did I ever even THINK something like this could or let alone

WOULD happen to me.

Phil, I'd love to keep in touch with you and if you so desire, my email

addy is in my profile for all to see and use if need be. I'm always

available since I can't do anything I used to anymore. All my surfing

friends have literally vanished except one and he was, and still is, my

BEST friend on Kauai. What everyone has told you about our families is,

discouragingly, true. It isn't that they don't want to help; I know

they all wish they could do something. After this long, I intentionally

leave their presence if I am having a bad pain day or in a breakthrough

pain mode, because they have seen and HEARD ME suffer much more than

I've really ever wanted them to. I can see the frustration on their

faces when and if I let them see how much pain I'm in. I've gotten to

the point where I never want them to see me in severe pain anymore.

I have 3 children. During my surgery years of 1997 - 2001, our youngest

boy was 15 and in 10th grade, our daughter, the middle child was 16 and

in 11th grade. Our oldest son, who is technically my stepson, was 23 and

in college. The two youngest ones didn't have a " daddy " or Father for

those high school years. I managed to sweat out going to their High

School Graduations, but I don't remember them at all! What happened is

my children lost their Father back in 1997 and my wife finally lost her

" husband " when I had my breakdown during the first half of 2005. Things

simply have not nor will they ever be the same again as they were before

early 1997.

I refuse to accept this fact, however. I figure by even trying to accept

all that has happened and MAY happen, I'm giving up all HOPE. No one

will or can take away that one single thing we all have inside of us.

Even if my pain doctor told me I had 6 months to live at my next

appointment, I'd get real close to his face and literally scream, " What

right do you think you have by telling me this and attempting to take

away any and all of my HOPE?!? Neither you nor anyone can take away that

ONE THING nor do I refuse to let it go! "

Foolish? Perhaps. Ignorant? Maybe. All I know is the friends I don't see

or hear much from anymore and all my close relatives really DO care

about me and wish with all their might they could do SOMETHING,

ANYTHING.

You know what? Just knowing that piece of truth gives me all the comfort

I really need now after all these years and probably for many years to

come. I've learned a lot in the past decade and I realize that no

matter what may happen around me, whether I like it or not, my life will

continue to go on. One way or another (if you get my meaning/if you

catch my drift! ).

Feel free to look me up in my profile Phil. I'm chock full of helpful

info from a guys point of view but will always be just as happy writing

to you through here.

Don't even THINK about giving up persevering through the days and

nights. Almost, if not ALL of us are doing that very same thing. Second

by second, minute by minute, hour by hour, day by day, night by night,

week by week, month by month, year by year and now for me and many

others, decade by decade.

It CAN be done!

May God BLESS YOU too!

Aloha Just For Now,

Hawaiian Wayne

[Guest guest]

Hi Carol and Phil,

I think we can all understand the struggle of being in pain around people who

don't understand.

One nice thing that came out of my disability is that I can spend more time with

my mom, who has advanced cancer. We live a mile apart and usually see each

other every day.. I have hip and back pain, and when we see each other the

first thing she comments on is whether I'm limping more or less. And she wants

so badly for me to not hurt so she'll be really happy if I'm walking straighter.

I don't want her last days to be spent worrying about me and my pain, so I try

to put a brave face on most of the time. I do tell her if I can't go somewhere

because of pain, and I don't want to give her false hope. I think she's

accepting that I'll never be pain-free, but I want her to know that I can cope

(even if some days I feel like I can't).

That's where my husband and friends come in. I've actually become really close

friends with a physical therapist I saw most of last year. She has pain issues

also, and we never judge each other when we talk about our pain. Also, this

group has been really helpful to me.

After the injury/accident, my husband had a difficult time not trying to " fix "

me. It took about a year, but we have come to an agreement that I'll try to do

as much as I can. In return, he will help me in any way that I ask (finding a

closer parking space, massaging sore spots, letting me rest, etc.).

Sometimes people just can't understand our physical pain. But the emotional

pain of being so limited in activity can sometimes even be more painful than

physical pain. This group really helps me at those times.

Hope everyone has less pain today, Janie

----- Original Message ----

I so understand your grief. As I think most of us do. I have been feeling very

good for the last 3 weeks. My pain levels have been low and I've actually been

able to do things with my family that have been long coming.

I am in pain, I am not coping, no matter what cheerful, or

> semi-grimaced, face I force myself to wear for the world.

> I cannot cope, the simplest everyday things throw me, a

> formerly capable chap, into a total dither.

>

[Guest guest]

Phil

You are not alone, this is me and my family in a nut shell. I deal with my

pain and families unfairness each and everyday. One day they remember I'm a

chronic pain person an do things for me, the next they forget I even have the

problems.

So any time you want to chat just e-mail me or I will catch you on the group.

Hang in there and keep talking to your family to get your point across. That you

need help and you will be there for them, but it will depend on my pain that

day. This is what I did and keep reminding them.

Good luck

Toni