Re: Apology/etc/whiner

October 30, 2006

Hi from one G.R.I.T to another!! " where bouts you from in GA " . LOL

Dotti (Maysville, ga)

trueadelan <adc1979@...> wrote:

I sincerely apologies for responding to posts without really

introducing my PA self. I told you I am a retired RN but I really

have not told you what makes me go 'ahhhh' or 'grrrr' or 'owwww' or

even 'zooom zooom'. I apologize in advance if I'm too wordy...I tend

to do that so I'm not insulted if somebody complains.

I am always hesitant to really talk about me and my real life. Too

many people *in* my real life see me as a whiner or a slacker. They

never viewed me that way until I had to stop working. SSD (after an

eighteen month fight) was the kicker that labeled me. I want you to

know a bit of me and I do believe that someone here will understand

me. God knows, few people at home do.

first, I'm a G.R.I.T.S. If you know what that is, I need explain

little. Georgia is my home base.

I have always been a girl who hated attempts to tickle me. It hurt!

I have always been able to focus on something else get that something

else done then go on to still something else before I was " bone tired

and aching " . That kind of pain was acceptable to the people in my

life at the time. I always had horribly painful periods with

migraines and mood swings. I could do splits and other body

stretching bending show off things with no effort at all (you are so

flexible! was the praise). I remember having mumps and the measles

and chicken pox (still have a scar) and recurrent strep

infections..things children don't have to have now. I remember being

told to not pick that scab on my upper arm (small pox vaccination)

and to drink that % & *$#!!!!! stuff called medicine. We wore special

white Brownie gloves with our brown shirtwaist dresses, brown

beanies, ankle socks and brown oxfords. It always hurt to sit still

for hours in school, church and in brownie meetings (learning to be a

lady) but I dare not whine. Ladies must be stoic.

I first joined this group under another name a few years ago. I had

been told my skin problem was palmar plantar pustular psoriasis, my

pain was PA and Fibromyalgia, and my gut was 'only' IBS. The

headaches were only 'stress'. The fatigue and difficulty sleeping

were just my fault because I was not exercising enough/too

much/eating the wrong things/too much of the right things/ I was

malingering (NOT!) and that I should take more premarin since I did

not have ovaries. I was told: Take these (high) doses of NSAIDS and

this antidepressant, MTX once per week, tale that pill and sensitize

your skin for the light treatments...you'll be ok.....then NO those

liver enzymes are not important...yes your bili is triple what it

should be the other enzymes are elevated your WBCs are a bit low,

and you do seem to have a bit more bruising, but keep taking the

MTX. NOT! I was labeled 'noncompliant'.

Anyone else get the malingering or noncompliant labels thrown at you

while you were on your road toward a doc who actually would pay

attention?

Now, after years of whatever, I have a derm and a rheumy who seem to

actually care! diclofenac, Enbrel, etc... an ortho who does not want

to replace a joint with torn menisci and PA " quite yet'..braces and

injections first, he said. it's systemic, he said... and you are

only 53, he said. no lordosis in your neck? bone spurs, bulging

discs? PT and flexeril (which is useless) ONLY...We will deal with

your lower back later, he said....... grrrr. I'm will go to

another ortho doc.

I don't complain at home. At the end of 2003, right after we made

a major move, while we were still living out of boxes, my husband of

25 years, at age 47 was dx'd with stage IV rectal cancer. (I'm a

highly trained nurse with a buncha letters behind my name, right? I

can take care of EVERYTHING, right?) one month later, our pregnant 20

year old, I decided to drop out of college unemployed daughter moved

in. (I can handle anything).

My 24 year old psychiatrically disabled son lives with us now along

with my now two year old grandson and hub has liver mets. Hub gets

his Erbitux infusions each week and still teaches school although

he's had three years of grueling state of the art treatments....(yup,

I don't complain at home) His coworkers and friends all tell

me, " please take care of him, he's the greatest " .

I feel guilty when I just want to stay in bed and cry. I feel guilty

when I pursue more tx for my own body. It's expensive even with

group insurance + Medicare and hub has used up all his sick leave so

he gets docked. I feel like a whiner, but if I don't get some

relief, I will be unable to take care of everybody. Rheumy and derm

are duking it out over the Enbrel dosage...<sigh> I should NOT have

to worry about that.

That's a bit about me...only a tiny part but I'm sure I have told too

much. Thank you for reading this far. I'm into as much self care as

possible so I'm always looking and asking for sites...This link

(recommended to me by my PT) is the best I've found with easily

understandable to the layperson descriptive terms, etc...and has

helped me with general and specific information about bones, joints,

etc. disorders and treatments and has great images...use the index on

the left " information about':

http://www.eorthopod.com/eorthopodV2/index.php/ID/79791a8f7dd9f446b386

53cbeab9a955

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October 30, 2006

>

> Hi from one G.R.I.T to another!! " where bouts you from in GA " . LOL

>

> Dotti (Maysville, ga)

>

Hi, Dotti!

My hometown is Columbus, but I live in Gwinnett County...We always come

home, don't we?

October 30, 2006

Oh my dear,

A whiner you are not. Most people would have already jumped off the roof.

For some reason families are never ready to acknowledge our pain or other

symptoms of our disease. Since I have fibro and PA, when I complain about one

they think I no longer have the other. I live with my oldest daughter. She is

not a

caregiving type person and will be the first to admit that that is something she

has no

ability for, but she doesn't condemn me either for things I've forgotten, or not

been

able to do. She doesn't complain is she comes home to frozen microwave dinners

instead of a cooked from scratch meal. (It's just the two of us) We have

always had

a special bond as mother and daughter that I don't have with my other 3

children. You

may have also noticed that other posts in our archives mention family member who

just

don't understand because we don't LOOK sick. I honestly don't know how you

could

ever convince them that you are sick. I will remember you in my prayers and

hope that

God has an answer for you. We are here whenever you need to vent. Don't worry

that

we won't understand, we have all been there or done that already. We all pray

for strength.

It is one thing that makes the other symptoms so much worse for me, is that I am

always

so tired. God Bless,

Janet in Ca

-------------- Original message --------------

From: " trueadelan " <adc1979@...>

> I sincerely apologies for responding to posts without really

> introducing my PA self. I told you I am a retired RN but I really

> have not told you what makes me go 'ahhhh' or 'grrrr' or 'owwww' or

> even 'zooom zooom'. I apologize in advance if I'm too wordy...I tend

> to do that so I'm not insulted if somebody complains.

>

October 30, 2006

trueadelan,

You have more than enough to whine about! - And feel free to do it

here, with regularity. I'm saving your post just in case I ever want

to feel sorry for myself ever again. Hang in there, and take it easy

whenever you can. I hope that you can find some time everyday when

you can relax and just " be " . ...Brent

October 30, 2006

Mercy....you have whining rights! Let it rip woman! I too am a

member of the G.R.I.T.S club...born north of Memphis (was actually

kicked out of Graceland while going through the tour one time but it

wasn't my fault) and then moved to Disgusta GA. When I go " home " , I

go to Augusta. I go to TN for high school reunions. Last time I went

to TN was for my childhood church's Centential celebration. We were

trying to dig up the time capsule we had buried 20 years earlier. We

just could not find the thing. We'd go to the tree and count the

steps and dig. We dug completely around the tree. Finally someone

went and got a backhoe so we could get deeper. Just before we had a

chance to stike oil, Pummy Passmore came along and told us that he

and the pastor's son had dug that thing up a week after we buried

it. That's why I like it up north. As far as whining, this site is a

good place to let it all out. I am sure you need someone to

say " take care of YOU...cause you are so special " . We will do that.

Our disease is invisible and people just don't see it...even if you

have a cane....it's hard for people to see it and " get it " . The

latest challenge I am facing along that line is what to say when

people ask how you are doing. I was always one to smile and

say " Just fine " ...blah blah blah. And I don't want to spread gloom

and doom around but I'd really like to be honest about it. I tend to

say something like " A little better everyday " or " Breathing and

happy to do it " . I want to be positive without placating people or

depressing them. The only time I am really honest about how I am

doing is when I get a sales call at home and the person asks " How

are you today? " THEN I tell them. It's a great way to get yourself

put on the " Do not call " list. After you've given them the full run

down from the time you first noticed symptoms to present, be sure

and thank them for asking and let them know that most people don't

care enough to ask such a thoughtful question. Otherwise you might

come across as rude. -Betz

October 31, 2006

Brent?

Thank you for your kind words....I've found that my family expects me

to be in the bathroom a lot when my 'stomach' is acting up. There have

been times when I've used that fact plus the traditional 'library

selection' to extend bathroom time. It's a guarantee of alone time as

long as my son is available to take care of his 2 year old nephew, lol.

It's devious I know, but it works!

<snipped for brevity>take it easy

> whenever you can. I hope that you can find some time everyday when

> you can relax and just " be " . ...Brent

>

October 31, 2006

I have this problem also... I mean what do you tell people when they

ask. I know they are concerned but I hate giving the same ole

answer...but I want to use humor when answering too...the other day

I told someone... " that it is still our for debate! "

Dotti

>

> As far as whining, this site is a

> good place to let it all out. I am sure you need someone to

> say " take care of YOU...cause you are so special " . We will do

that.

> Our disease is invisible and people just don't see it...even if

you

> have a cane....it's hard for people to see it and " get it " . The

> latest challenge I am facing along that line is what to say when

> people ask how you are doing. I was always one to smile and

> say " Just fine " ...blah blah blah. And I don't want to spread gloom

> and doom around but I'd really like to be honest about it. I tend

to

> say something like " A little better everyday " or " Breathing and

> happy to do it " . I want to be positive without placating people or

> depressing them. The only time I am really honest about how I am

> doing is when I get a sales call at home and the person asks " How

> are you today? " THEN I tell them. It's a great way to get yourself

> put on the " Do not call " list. After you've given them the full

run

> down from the time you first noticed symptoms to present, be sure

> and thank them for asking and let them know that most people don't

> care enough to ask such a thoughtful question. Otherwise you might

> come across as rude. -Betz

>

October 31, 2006

What to tell people who ask how you are? I think I get this idea from

a post on this board, but I can't remember...

I tell them, " Some days are better than others. This is one of

those. " Or " is not one of those " as the case may be.

sherry z

>

> I have this problem also... I mean what do you tell people when they

> ask. I know they are concerned but I hate giving the same ole

> answer...but I want to use humor when answering too...the other day

> I told someone... " that it is still our for debate! "

October 31, 2006

Oh, please dont feel guilty!!! Without sharing too much, there have been

times even lately where if it had not been for my precious 5 yr old I would

have checked out of this world a long time ago. There are times I can't get

out of bed and all I want to do is crawl into a hole and just simply cry. I

hope I dont get into trouble for typing this (some lists forbid religious

talk) What gets me through? God. I feel that he never gives us more than

we can handle (I question his sense of humor at times lol) and I am going

through this for a reason. What that is I dont know. Maybe I can touch

just one person and educate them about our diseases or conditions.....I just

pray about it. You have been through alot, but just from reading what

little you shared with us I know you are a very strong woman, mother, wife

and grandmother. Just know we are here for you and you feel free to yell,

scream, whine, cry, vent..whatever it is you need. This is an incredible

group of people!!!

God bless

On 10/30/06, trueadelan <adc1979@...> wrote:

>

> I feel guilty when I just want to stay in bed and cry. I feel guilty

> when I pursue more tx for my own body. It's expensive even with

> group insurance + Medicare and hub has used up all his sick leave so

> he gets docked. I feel like a whiner, but if I don't get some

> relief, I will be unable to take care of everybody. Rheumy and derm

> are duking it out over the Enbrel dosage...<sigh> I should NOT have

> to worry about that.

>

> That's a bit about me...only a tiny part but I'm sure I have told too

> much. Thank you for reading this far. I'm into as much self care as

> possible so I'm always looking and asking for sites...This link

> (recommended to me by my PT) is the best I've found with easily

> understandable to the layperson descriptive terms, etc...and has

> helped me with general and specific information about bones, joints,

> etc. disorders and treatments and has great images...use the index on

> the left " information about':

>

> <http://www.eorthopod.com/eorthopodV2/index.php/ID/79791a8f7dd9f446b386>

>

November 3, 2006

I feel like a whiner too. It is hard to stay positive about your

health, future, and life in general with such a bleak future. When

I bring up my PA to friends or strangers, people either don't

beleive me or they feel really sorry for me since I am pretty young

still. Instead I wish people would be empathetic, yet don't feel

sorry for me. I feel weird when people do that.

I catch myself apologizing when asked to do hard labor and I

decline. I also found myself restricting my social life and

activities due to a perceived sense of limitations. I now try to

stretch my limits, but I learned the hard way that I do, indeed,

have limits. Again, it seems to be a balancing act.

At work, people are not very sympathetic with me...at all. When I

was at my worst, my collegues and boss did every thing they could to

make me feel like crap for missing work. Ya know, since I was being

unreliable and a burden, a complete 180 degree from the " old " super-

dependable and super-responsible me. When I was on crutches, people

thought I was faking it and no one lifted a finger to help me - even

when I asked. I still get pissed off when I think about it. I

still ask myself why I had to go through that - what was the

lesson? To this day, I am still fighting the perceptions my co-

workers have of me from 2-3 years ago.

Has anyone had this problem too??

Even though I have tried to explain what I have, no one seems to

understand that yes, I have an autoimmune disease, and yes I may

look healthy, but there are days that I can hardly walk. The good

days have become more and more lately with the Sufalazaine kicking

in though...

I have learnt to tell people that " I am fan-fabulous, thanks for

asking " or " I am well, thank you " ...no matter what. If I feel bad I

say it sacastically. I only do that because I am tired of

middle aged women lecturing me about " oh, if you feel like that now,

what are you going to be like at my age? "

To that I usually reply, " if I am lucky, I won't be in a

wheelchair " . At that point, they don't know what to say so they

walk away. I know, I need to work on my people skills a little

more. Cause I can be a little sh*t sometimes...

but if they don't take my illness seriously, then I won't take them

seriously either! Humrph!!!

[Editor's Note: Fortunately for me, the negativity of others is seldom

contagious. Most days, I find more things to be happy for than I could possibly

have imagined when I woke up in part because I choose to emphasize the positive

things in my life. I celebrate more the things I can still do than mourn the

things I have lost. I have PA but it doesn't have me. I spent my entire working

career (36 years) with PA and I am certainly familiar with the " you don't look

sick " attitude of others, but I seldom gauge my value or my truth on what others

think of me. I also remind myself that just as others don't know my pain, I

cannot possibly understand theirs. How many of the people that I came in

contact with daily had a bad marriage? An alcoholic spouse? A self addiction?

A sick child? A dying parent? A huge financial crisis? A tumor? I don't feel

I have the right to EXPECT people to understand me any more than I am able to

understand them and the things that make them weep. Given this, I long ago

decided that pity pots were to be sat on for about as long each day as the other

pot I sit on. I have always volunteered because helping others is the best way

to stop focusing on yourself. As it became harder to volunteer outside of the

home, I undertook things such as moderating this list and helping out at a local

food pantry by doing record keeping when I could no longer help with the

hefting. I believe that a wheelchair is in my future, too, but there are so

many wonderful things to be seen while sitting down...

Kathy F.]

>

> I have this problem also... I mean what do you tell people when

they

> ask. I know they are concerned but I hate giving the same ole

> answer...but I want to use humor when answering too...the other

day

> I told someone... " that it is still our for debate! "

>

> Dotti

>

November 3, 2006

Thanks for the good thoughts, Kathy!

My parents' generation always said that hardship builds character.

I thought that was the dumbest thing I ever heard, but now having

gone through quite a bit of trouble - not just this latest with PA -

I have to say there is quite a bit of wisdom in that old-fashioned

idea.

It's not automatic, though. Trouble can make you bitter, or it can

make you strong and compassionate and kind and humble and focused on

what really matters in life. We each get to make that choice every

day.

Now, that's not to say that I don't do my own share of whining!

I've been practicing Betz's idea of the 7-minute pity party. I even

set my timer. When the dinger dings, I dry my tears and move

forward. I like your idea of timing the pity-pot to the potty-pot,

too! I might try that as well. I could sit there every day and

moan and groan and be-witch to my hearts' content for a few minutes -

then flush my troubles right down along with the other. I like

that idea!

best,

sherry z

> [Editor's Note: Fortunately for me, the negativity of others is

seldom contagious. Most days, I find more things to be happy for

than I could possibly have imagined when I woke up in part because I

choose to emphasize the positive things in my life. I celebrate more

the things I can still do than mourn the things I have lost. I have

PA but it doesn't have me. I spent my entire working career (36

years) with PA and I am certainly familiar with the " you don't look

sick " attitude of others, but I seldom gauge my value or my truth on

what others think of me. I also remind myself that just as others

don't know my pain, I cannot possibly understand theirs. How many

of the people that I came in contact with daily had a bad marriage?

An alcoholic spouse? A self addiction? A sick child? A dying

parent? A huge financial crisis? A tumor? I don't feel I have the

right to EXPECT people to understand me any more than I am able to

understand them and the things that make them weep. Given this, I

long ago decided that pity pots were to be sat on for about as long

each day as the other pot I sit on. I have always volunteered

because helping others is the best way to stop focusing on

yourself. As it became harder to volunteer outside of the home, I

undertook things such as moderating this list and helping out at a

local food pantry by doing record keeping when I could no longer

help with the hefting. I believe that a wheelchair is in my future,

too, but there are so many wonderful things to be seen while sitting

down...

> Kathy F.]

>

November 4, 2006

So true, Dotti! I do that every morning during my daily devotions.

Starts the day off right.

best regards,

sherry z

>

> We all need a pity party sometimes but.. how about 7 mins of

counting our blessings!!!

>

November 4, 2006

Oh, Kat - I feel exactly the same way. I feel like all I ever talk about is

physical problems, every discussion seems to go there. I work in HR in a

school, and only a few people know what's wrong with me, so when I'm out I

get lots of " are you sick? " questions, and I truly don't want to get into it

with strangers. They'll see me struggle up the stairs, and ask questions as

well. My boss has been wonderful, but there are definitely some people who

make me feel unreliable and a burden, particularly others in my department

with their own burdens. They act like I get special treatment, which I

certainly don't, and if they need something from me, they won't come get it,

they'll expect me to bring it to them - they are 2 1/2 buildings away. I

try to limit my trips, but it's hard. Even the bathroom is 2 flights of

stairs away, or 2 1/2 buildings away. My boss is letting me work from home

on Wednesdays (I take MTX on Tuesdays and am wiped on Wed!) and I know that

they're all wondering why I get to do this.

It is always a balancing act - with work and with family, and trying to stay

positive without letting people expect too much is hard. You have my

empathy!!!

I took my first Enbrel shot last night. It wasn't as bad as I thought, and

I'm hopeful that it will be a great thing for me!

Niki in NC

Kat said: