Being Judged For Not Working

9/18/08 4:50am

I myself was signed of indefinately from working nine yrs ago, I used to be a carer in the community, It got so bad that i was having injections in my knee joints so that i could keep on walking/working,, they were so swollen, I limped because of RA in my ankles, I cannot believe i was subjecting myself to more damage to my joints just because everyone else presumed that i should still be active enough to work, I carried on like this for around five yrs before i broke down in tears to my Doctor, She signed me of there n then for life...Ive told very few people around me that i have RA purely because i dont look like i have it, yes i have bad days where my hips are killing me,and im wincing in the inside, but i to dont let the pain show, I cannot willnot let this condition drag me down to the point that i make others pity me, I have to take meds before i get out of bed, or even in the middle of the night due to the pains i suffer,Even members of my own family have insinuated that im not as ill as i look,They dont know that i have to time my pain relief every day, Ive had no help raising my children, no offers of help, nothing, Im proud to of done this without having to beg for help from my family. My four siblings live full lives with no restrictions, They have no idea how i live my life,or the pain i suffer:My RA is mine alone,they have no interest in sharing it with me . Dont let others drag you down with there views of how you *Cope* with your pain, They havent got any right to judge you, Sometimes youve got to rise above it,and be proud to cope with what youve been given in life, Never lower your opinions of your self worth, I doubt that my siblings could live and cope with what i go through, which is a small comfort to me, Im coping and living my life as full as a can,Be proud of who you are, youve earnt it.

haircuttinpro

9/22/08 9:03pm

am crying now , thank u for lifiting my spirits god bless you . i also go thru so much with family and friends , some people i dont even know and tell them about me. feel so sorry for me and make me feel good , but others my family dont understand at all . i wished we all could go on opra or some other show to tell our stories love cynthia xoxo

Rachelemma

9/25/08 4:58am

I started to write to you, but my computor went a lil strange on me.

I just wanted to thank you for your response to my message, Its much appreciated,and it makes me feel less alone in the world,when there are others whom have the same reactions from people as me.

I wish you well,and that you remain strong and healthy your spirit shines through, and i can tell what a lovely person you are, dont let others get you down stay strong and enjoy life as much as you can, your four legged friends are lucky to have such a loving owner.

Oh and yes id love to appear on Oprah..lol...It would be fun!!!!!!

Take care...

Rachel xxx

Jo

10/ 7/08 10:31am

I have been unable to work since I was 47.I am now 57.I have had 28 oral surgeries.Although they are the least of it all.I have had more emotional problems from it.I had oral implants put in a year and 1/2 ago.They became infected and every time I went back to him he would smile real big and say how great they looked.Do they really think we are that stupid.I did hair for 21 years and I worked as a dispatcher and I also worked at Mayo Clinic.Now I have 15 thousand dollars worth of oral implants in my mouth which I cant use because they are so painful.I have ganed about 25 lbs trying Lyrica for Fibro.Now if that doesnt make you depressed I dont know what will.But now I had a surgery on my sinuses by an ent I think highly of.She cleaned out all the puss around the one implant and did a culture as I requested.And guess what.I have yeast infection and staph in my mouth.So now what do I do.Go another year staying home even if I feel like I ccould go to a little outing,I cannot bear to see people stare at my Halloween teeth mouth and look 30 years older than I am.I dont know where to go from here.And that is just my mouth.So cry if you need to.We all have so much pain.It is easy to vent.And I dont think anyone takes it personally.We all take turns asking advice from our PEERS.Not from doctors or friends or family or the same who treat you like you are a drug addict.I am so tire of being told if I just would exercise I would be healed.Hah.,Where are their brains,if I exercise I tear muscle.When did these people get their MD'S??? So I am Jo and feel free any time anybody to vent to me.I can take yours.It is just so hard for me to take mine.I love all of our group members without even meeting them.I suggest we get on t.v. or have a camp where we can go and be together.I once suggested something like that and someone said hey that is a good idea.But with my fibrofog I have now forgotten what I said.We need to be like Congress.And make the rules ourselves.I think we all can see the difference in someone who wants recreational drugs and those who need medic cation.There is a difference between addiction and dependence.My daughter has high blood pressure and she is a diabetic.If she stopped her insulin she would possibly have a stroke or die.She is only 33 and is pregnant with her 3rd child,I worry so much about her that my pain has taken a back seat.What happens to her 2 kids at home if she dies.I am too sick to raise a new family so young.It would be an injustice to them.But It would also be an injustice to them to watch me just vegitate and not be able to give them the kind of childhood I had.So not matter what I fear for my grand children.So please say a prayer for my daughter Rachael.Please God let her High Rish Pregnancy go off without a hitch.Make her strong enough to take care of 3 children without a husband and money.You see there is always someone else worse off than ourselves.I thank God for my blessings.But I would gladly change places with my children or grands if it meant that they would be pain free.Thanks for listening to my prayer.I hope that doesn't offend anyone.But I have been a good person all my life.I went to church all my life.I served as a deaconess for 14 straight years.Taught Sunday School and now I can no longer do those things.I still know that God does have a plan.It might not be what I want.But I trust that he know what he is doing........Love to all Jo

suzyq

5/24/09 11:42pm

god bless you. you will be in my prayers, i have lost two grandchildren. they were adoptted to people in wyomey i havent saw them since sep, 1st 2005 donnie is 15 now and hannah will be 9 in oct. it just make my mental and phyical pain so much worse. i dont even have a adress on them i pray god will let me find them someday or they will get in touch. i miss them so much . we were very close.please keep me in your prayers.

Morgan

9/18/08 7:25am

As, you I try to cover that anything is wrong. People just don't understand it until they have lived it. To them, if you don't " look " sick, you aren't sick. It is really hard to work. Your boss, just like everyone else either dosen't care or doesn't understand. I 'm amazed at how long people can work while dealing with these horrible conditions. Good luck to everyone!

Jo

5/27/09 5:17am

HI MORGAN IT IS MOMMA JO.NO HONEY I HAVE NOT FORGOTTEN YOU.I HAVE BEEN GOING FROM ONE AILMENT TO ANOTHER.I HAVE BEEN ALONE WITH JUST 2 OTHER PEOPLE PLANNING A CLASS REUNION.FOR 3 DIFFERENT YEARS.I RECEIVE HUNDREDS OF EMAILS AND I TRY AND ANSWER EACH ONE.I THOUGHT THIS WOULD GIVE ME SOMETHING TO DO TO OCCUPY MY MIND.

AS I TOLD EACH PERSON MY DISABILITIES I RECEIVED MORE COMPASSION FROM THEM THAN MY OWN DAUGHTERS.OR FROM MY BEST FRIEND.THEY JUST DON'T GET IT.

ONCE WHEN I WAS AT A FOOTBALL GAME I GOT HEAT STROKE.I NEVER MADE IT TO THE RED CROSS STATION.MY BEST FRIEND TRIED TO GET ME TO THE CAR BEFORE THE GAME LET OUT.

SHE KEPT TELLING ME I WAS GOING TO HAVE TO WALK FASTER.THAT COMMENT ALONE MADE ME UNDERSTAND THAT SHE WAS CLUELESS.HOW CAN WE WALK FASTER WHEN IT TEARS OUR TENDONS AND MUSCLE.I DONT THINK SHE EVER GOT IT.

AND IF SHE DOES CALL ME SHE ALWAYS BRINGS UP ISSUES SHE KNOWS ARE THINGS THAT ARE HURTFUL TO ME.THEN WHEN I CRY SHE MAKES SOME EXCUSE.

YOU KNOW HOW PEOPLE DO.THEY SAY A THING.AND WHEN IT IS NOT TAKEN WELL THEY SAY OH I WAS JUST KIDDING.YEAH RIGHT.SO THE CLOSEST PEOPLE IN MY LIFE ARE THE MOST JUDGMENTAL.I THINK IT IS THE MOST HURTFUL THING IN THE WORLD THAT OTHERS JUDGE US WITHOUT EVEN TRYING TO UNDERSTAND.NO MATTER WHAT LITERATURE YOU GIVE THEM THEY ARE TOO BUSY TO READ IT.THEY DON'T UNDERSTAND COGNITIVE DIFFICULTIES AND SPEECH PROBLEMS.THEY DO NOT UNDERSTAND ANYTHING.I FEEL SO SORRY FOR YOU BEING SO YOUNG TO HAVE TO GO THROUGH THIS.IF I COULD TAKE YOUR PAIN UPON MYSELF I WOULD.LOVE MOMMA JO

Morgan

5/27/09 9:27am

Hey Momma Jo,

it's good to hear from you. I'm sorry that I haven't kept in touch. I have been really quiet for the past few months. As you, I have alot going on right now. Since we spoke last I have began the therapy treatments for my RND and some time within the next month or so I will be making the journey to Philadelphia to begin my intense therapy regimin to try to put the RND into remission allowing me to actually live some parts of my life. We are out of school already. Friday was our last day, so I am officially a senoir in highschool. That scares me. I'm not ready to graduate yet.Right now I'm having a hard time. My friends have turned their back on me. One of my "friends" is into a mess that she has absolutely no business being in. She put me between a rock and a hard place. I'm the only one that knows her secret, so I can't tell her mom, but I feel like I'm a horrible person b/c I haven't told her mom. At the same time I'm extremely angry with her. I have a special interest in a guy friend of mine ( if you know what I mean ), but I didn't want him to know b/c he just came out of a rough relationship, so I wanted him to have time to heal and I wanted him to make the first move that way the relationship would not be aquard. Well, this "friend" of mine decided that it was her place to tell him this. She was very rude and she told him, " if you have any feelings for her you had better tell her before she goes to Philly and you better not hurt her!" That upset him and me, so now things in that situation has been made aquard b/c some one just oculdn't mind their own business. Anyway I have to go in a hurry I will talk to you soon!

Much Love and Many Prayers,

Morgan

sunidayz

9/18/08 7:33am

I receive a lot of attention to that I think. People saw me work for over 20 yrs plus raising three children . Then it was no work at all and on disability. I always get the feeling that they think I am being lazy. I am not at all. I am sick and it isn't a disease that you can tell by looking at me.

I as Karen feel that I would go back to work fulltime in a heartbeat. In fact , it's been making me depressed lately that even 5 yrs. since I stopped working , I still miss it so much. I miss the workplace, my job and the people. I was the Purchasing Mgr., Accounts Payable and Payroll, so I a lot of interaction with other people both on the job inside to people on the outside as well.

I hope I didn't upset anyone by talking like this. I guess I am just venting....

penncort

9/18/08 9:29am

I can totally relate to what you are saying. I too have to take medication before being able to get out of bed. I have a handicapped parking sticker and so many people just look at me like, why does she need that? I used to be a teacher and I so miss my job! Now I work part time at an after school program as I too am on disability, but it's not the same...and I am a single mom. But my family and close friends are so supportive, so I am fortunate in that way. However, it does get discouraging when strangers judge me. I feel like shaking them sometimes and saying: I AM DOING THE BEST I CAN! You all know, somedays just doing the laundry is a big accomplishment! My advice, try to focus on your accomplishments each day, no matter how small they may be, to us they are monumental!

Jo

9/18/08 10:55am

I too worked and raised 3 girls mostly by myself.I was a hairdresser for 21 years.The pain in my neck started when I was 19 to my knowledge as that is when I re entered the work force to support 2 babies.You have no idea how hard it is to bend over a sink and wash someones' long hair.It is like lifting wet clothes out of the washer that didn't go through the spin cycle.So I got to the point where I got a job at the JPD.I was a dispatcher and quite proud of myself that I did a good job once I learned.I found it exciting to be told I was in control of protecting 1/4 th of the city.Unfortunately I had a new baby by then and she was 3 yrs old.You cannot work nights and leave a 3 year old to run around unattended while you got much needed rest.On top of 12 hour shifts.I could not afford a sitter.I was barely making it.No one inforced child support in those days.So I had to go back to being a hairdresser until Mayo came here and I worked there 5 years when I had 2 accidents with my back.I still told them up front about my neck.The plan was to give them 2 years as a medical personnel.Then you could ask for a latteral or move up the ladder job.We were never allowed to sit.No one but people who did subscribing sat.So I worked another 2 years with limited duties and tried to work half days,then they would try something else.All the while,I was still in so much pain.I walked out from working if you can believe this from the pain clinic.The pain clinic,and they said they would not do anything for me,not couldn't.Will NOT.I was considered an employee.That meant I would have been qualified for workers comp.well you can imagine all the comments I got.Must be nice to work half days.It must be nice to be off for 3 months and come back.It must be nice to still get some money while not working.Well I have news for them.I have been unable to work for 11 years and there isn't anything nice about it.I was cheated out of my benefits and luckily have a husband who can continue to pay our bills because we dont and have never lived beyond our means.Now I am glad that my husband didn't listen to me when we were able to build a new house with a pool.He was cautious and he had been just as poor as I was as a child.He had no intentions of letting mortgage payments choose a life style which would keep us down forever.I used to complain I hate my duplex.He is a builder and he said we would just be here 2 years and then he would build me a home with a pool.But with 3 kids life just happens and we have been here 24 years.Our cars are old but they are paid for.So all in all I would say I am lucky.But I still get that stare when I park in handicapped.I have even had people shout obsenities to me for parking in a handicapped space.We just don't look sick to the world.ergo we aren't to them.We all try to hide it.They have no idea.Look how Michael J. Fox hid his Parkinson's.He was I am sure worried how this would affect his working and the income to his family.We need more celebs who have this come out.Just like they did with AIDS.We too have an auto immune disease.Ours isn't a death sentence.It is a life sentence.Sorry to go on and on.But I worked 30 years all totalled and stopped at age 47.Young by the working world standards yes.Now I am 57,in pain,constantly thinking about suicide.And I have to have surgery next Friday.Oh yeah this is so much more fun than working.......Jo

Jan G

9/18/08 11:22am

I was in I.T. at a local major hospital (also out in 2005) I understand the odd
hours and inflexibility when in a specialized position such as that.
People don't stop getting sick / hurt, but somehow you have to.

It's sad that loved ones can be so supportive, beg you to applying for disability.
And as soon as you do - they pull a 180.

'You don't look sick','I have pain-I work' & my all time fave?..."Must be nice"
Because Yes, I'd call it living in the lap of luxury, exactly.

I so look forward to the carefree days in which I can barely move, much less get
to the bathroom to verify yet again that there is no blood in my BM or vomit.

They don't realize that you don't need someone to tell you to go back to work.
I'm having that struggle every damn day, even now, 3 years later.

Anonymous

9/18/08 3:33pm

I'm not even 40 yet and have been on disability for over a year and unable to work since 2005. People look at me and can't see a disability so therefore they assume that I'm just being lazy. I still have a daughter to raise. My disability pay has sent me to live with my parents because I can't support me and my daughter on my own. Yes, I would go back to work in a heartbeat. I miss all the intereactions with other adults and my friends, well, guess they weren't friends.

Reni

9/18/08 5:26pm

I'm new here and this is my first time writing a comment. What's been shared has so touched my heart. I, too, have been judged harshly by others. One stands out in my memory more than others. I worked up until 2003. I was found to be disabled on 10-6-03, 1 day after my 42nd birthday. I've been on disability since 2005. Earlier this year, a friend of mine was looking for a job and I referred her to my last employer. I, of course, went with her out there but I stayed in the car, in the handicapped space right in front of the entrance. A few of my former coworkers still worked there and came out to visit me. It was going okay until one girl asked what I was doing now and I told her that I was on disability. Her response to me was, "Oh, so you don't do anything" with a look that sliced through me and she turned on her heel and left. I must say that I was shocked by her tone and words at first and felt quite devastated. It still hurts to think about it, but knowing I'm not alone with it inside helps. Like everyone else, I would give anything to be able to get up and go to work again. I also would cheerfully give up my handicapped parking space to anyone who wants the constant pain that I'm in. However, I wouldn't want anyone else to have to live the life sentences (like Jo said) that I've been handed. I think it's horrid when even your own family and supposed friends are looking at you like you're a pariah or something even worse. I am blessed with a very supportive husband and family. Well, some of them anyway. What I think about me is what's the most important thing, though. Some days are better than others, but I attempt to have these diseases instead of them having me.

Pink Flower

9/18/08 6:06pm

I am a housewife. I raised three wonderful boys and have dealt with a very difficult

marriage for 33 years....

Now everyone says I'm lazy because I can't push my cart of groceries, I can barely drive for one hour a day, I'm not half as active as I used to be before I started suffering from this disease..... As if it were more pleasant to feel useless on top of

trying to cope with the physical pain and the emotional pain due to all I have lost

the ability to do. My self-esteem is quite low right now., so I understand you perfectly. I'm talking to the lady who worked 20 years in the ER. I try not to listen to anybody, except my doctor.And I do what I can. For the pain, taking 2 hot showers a day (20 minutes each) will ease your pain for up to 3 hours without painkillers.

c

9/18/08 10:31pm

I hope now that you are done venting you can pull up your 'big girl' panties and say- the hell with what other people think. And start using all the energy you are dispelling to vent negitive feelings and use the energy in a positive way and start healing yourself. With good thoughts and concentrating on what YOU think of YOU maybe you can get past all this BS and start feeling better...good luck to you.

Be Well

C

deborama2

9/27/08 9:51pm

I love that comment I just have to get there. I have had chronic pain for 6 months with no diagnosis. I was in Er the other day ( the ER that I work in as an RN), and was there for pain control. My regular Doctor was off and I was admitted by another one. He immediately called me a drug addict, insinuated that pain was all in my head, suggested picking up meds every 3 days and also random drug testing. I was devistated to say the least. The pain is NOT all in my head it is very real. I suffer from lack of continuity of care because my GP is always off. I want the minimum amount of pills that will relieve my pain and I just want to live a relatively normal life!!

I can't believe I was sabataged like that in my own dept of work. I haven't even met this Dr. before. So I sit here now in agony because now I think I have to cut down on my pills. I am going to see a DR. on Monday(not the above mentioned one) because my GP again is off. I am waiting for a decision on long term disability and feeling very stressed. I know this is only the opinion of one man. I need someone who will work with me and not be against me. Thanks for listening to my rant.

Raz

9/30/08 7:31pm

I am with you on that. As a migraine/arthritis sufferer(and I'm beginning to think it's not really arthritis, but that they used it as a 'garbage can' label) I have the (sarcastic) delight of never seeing the same doctor twice. I've been on State Supplemental Income(disability for those who have never or rarely been able to work) for over ten years, and every time I find a doctor who is willing to look deeper into my pain, they leave.

I am in a very depressed area(Merced County, CA) and I often feel like I'm living in the Dark Ages. I have so many triggers for both RA and Migraine that my life is that of a complete shut-in, or nearly so. I don't even have Public Transportation(as if I could ride a bus for more than five minutes without wanting to scream).

On top of that, my family ignores me as much as possible, however, if one of them has a birthday I'm a bad person if I don't remember to call.

My 50th birthday came and went with only my mother calling me. My brother and sisters are too busy to remember.

It doesn't matter what kind of pain you are in, if the *State* says you can't work, they must be right! I miss being able to run, and take the kids out, etc. I provide daycare and some homeschooling for kids that aren't mine in order to make my ends meet.

SMILEY

9/19/08 7:46am

I think you hit the nail on the head ! there are a lot of people who make a big deal over a headache or over normal everyday aches and pains or a cold I'm not trying to blow my own trumpet but I try to do as much as I can when I can .My doctors is not very far along the road and I can almost see it from my home , there are times I really need to get out of the house.. everyone will know what thats like ! and I had a appointment for a B P test and it was one of my better days and sunny outside ( I honestly cannot recall a single day without pain for more than 10yrs ) I walked it 'with a bit of a struggle but walked it . I stopped for a rests every now and again ( I have to use crutches ) and quite pleased ! but a family member came you will know the type housebound but only untill the claim comes through) And said "oh I see you walked ok to the Drs , 'its too far for me " .this is the same person who has just come back from a motorbike camping holiday in France!...and I forgot they suffer from terrible headaches constantly....

Do you know I honestly wish I was able to work too 'there are times when it's one of my good days I think ..I wonder if I can go and do this or that , but then try to do something and get brought down to earth with a bump. These healthy people who do not want to work don't know what they are missing .

Shesim

9/19/08 10:12am

I've been home now for 4.5 years and it's only been recently that I don't feel guilty for being on "DISABILITY"...I loved working but I FINALLY get the fact that I am not well enough to work!

So many people think they are experts on everyone else's lives...It still irritates me when someone tells me they know what's best for me...patience is not in my vocabulary.

Take Care,

Sherry

Mandy

9/20/08 9:28am

I agree with you 100 percent, People can judge you because they don't have FM and they don't know what it is like living with it,they are healthy,but I think those people should get FM or another chronic pain illness like Lupus,Arthritis, then they would know. To put it straight,they are uneducated about it and everything else.Get Educated People!!. I also have FM. Take Care

sherry

9/20/08 7:50pm

I know what your going thru, until 4 years ago, I owned and operated a home day care of 12 children. I would be so ill at night that I would be in bed a half hour after the last child left........not until one day I could not get up and was in so much pain, that I said I have to quit. None of the parents understood, 12 hour days with children of all ages had finally done me in. It has been a struggle and took me 3 years to get dissability. It amounts to one week of my normal pay...............we are in an apt., I cannot take care of a house, let alone get around in one anymore. I would love to be back working and no longer struggling debt wise.........be free of pain and depresion because of all the worrys...........I agree, each month when I go to the Pain management Dr., I see patients there, who I know have nothing wrong with them...it makes me even angrier..............I wish they did suffer,just for one day chronic pain. Then maybe they would go to work and enjoy their lives................

I miss church, people and every day things. Its lonely.....I have the best husband in the world though. I thank God for the Blessing of a strong marriage..........

Sherry, who just came thru Hurricane Ike in Webster, Texas.........:)

haircuttinpro

9/22/08 8:22pm

I ALSO WORKED FOR 32 YEARS AM 48 AND I STILL HAVE TO WORK 2 NIGHTS 4 HOURS DOING HAIR , I ALWAYS WANT ED TO HAVE MY OWN BUSINESS WORKED AS A WAITRESS FOR 6 YRS AND BEEN DOING HAIR FOR 26 YEARS NOW , DISABILTY DOES NOT GIVE ME AND MY 14 YEAR OLD DAUGHTER ENOUGH TO SURVIVE, SO I AM ALLLOWED TO MAKE SO MUCH, BUT AS A SINGLE MOM WITH 5 BAD DISKS IN NECK 2 HERNIATED AND 4 BULGING IN BACK ALONG WITH COLON PROBLEMS AND FLUID IN MY BRAIN EMPTY SELLA AND FIBRO AND ARTHRITIS. AND THYROID DISEASE, I AM SO SAD AND CRY EVERY DAY. HOW MY FAMILY PICKS ON ME ABOUT TAKING PAIN MEDS THAT DONT EVEN WORK ,AND SAY IT IS THE MEDICINE THAT IS CAUSEING THIS.. ANOTHER NIGHTMARE WITH ALL MY DOCTORS NOW I FIND OUT I HAVE CYSTS ON MY LUNGS, BREASTS AND LIVER THAT WASNT TOLD TO ME, I SAW THE RECORDS I GET ALL MY TESTS RESULTS AND HAVE BEEN NOT TOLD ALOT OF THINGS THAT WERE IN THE TESTS... I CAN GO ON AND ON I CANT EVEN GO FOR NECK AND BACK SURGERY CAUSE I CANT AFFORD TO MISS MY FEW DAYS OF WORK I AM GETTING WORSE . LOVE U ALL AND PLEASE GET ALL UR RECORDS AND READ THEM ALONG WITH MRI AND CT SCANS AND BLOOD WORK ,, XOXO I WISHED WE COULD ALL GO ON OPRA TO HEAR OUR VOICES ABOUT WHAT WE ALL GO THRU

Jo

5/27/09 4:59am

I ALSO WORKED AS A HAIRDRESSER.THEN WENT TO A LARGE MEDICAL FACILITY THINKING IF I COULD GET TEN YEARS IN I COULD GET A SMALL PENSION.BUT THE MEDICAL BENEFITS IS WHAT MY GOAL WAS.THAT MOSTLY DEVISTATES FAMILIES.

IT MAY BE A FAMILY CAN GO THROUGH A LIFETIME OF SAVINGS WHILE ALSO DEPLETING THEIR MEDICAL COVERAGE.BASICALLY WE OUT LIVE OUR MONEY AND BENEFITS.

EVEN IF WE COULD WORK,WHO WOULD HIRE US.THERE WOULD BE VERY MANY STIPULATIONS TO THIS.AND THE ONLY HOPE WOULD BE THAT SOMEONE MIGHT NEED SOMEONE OCCASIONALLY..THIS WILL NOT SUSTAIN YOUR NEEDS FOR VERY LONG.

IT WAS VERY HARD FOR ME TO ACCEPT THAT A MULTI BILLION DOLLAR COPR. COULD OUT LAST ME 20 YEARS ON THE ISSUE OF WORKERS COMP,WHICH I WAS ENTITILED TO.BUT DID NOT GET.IF IT HAD NOT BEEN FOR MY PSYCHIATRIST TELLING THE TRUTH OF THINGS.

I WOULD NEVER HAVE BEEN OKAYED BY THE JUDGE.AS THAT LETTER IS WHAT HE BASED HIS DECISION ON.I WAS FORCED TO RESIGN.SO NOW MY FAVORTITE WORD IS INJUSTICE.

IT SEEEMS LIKE WE ARE THE OLD OLD OLDEST INDIAN IN THE TRIBE.TAKING MEAT WHEN WE CAN NON LONGER HUNT.I WISH I KNEW A WAY TO MAKE MONEY.I WOULD GLADLY WORK MYSELF INTO EXHAUSTION. AS I DID WHEN I WAS YOUNG.IF ONLY SOMEONE ELSE WOULD TAKE MY PAIN AND LIVE WITH IT THEMSELVES AND SEE WHAT A GREAT PARTY WE ARE HAVING WRITHING IN PAIN 24/7.SO IN MY OPINION YES WE ARE SO JUDGED BY OUR FAMILY AND FRIENDS.IN FACT THE ONLY PEOPLE WHO SYMPATHISE WITH US ARE PEOPLE NOT WITHIN OUR CIRCLE OF FAMILY/LONG TIME FRIENDS.

ATLEAST NOW WE HAVE THIS SITE.AND WE HAVE EACH OTHER TO TALK TO.THAT IN ITSELF IS A BLESSING AND A COMFORT.GOD BLESS EVEYONE.

I KNOW HOW BAD IT HURTS TO FEEL THE RESENTMENT POURING OUT OF WHERE EVER YOU GO AT HOLIDAYS AND SUCH.YOU COULD CUT THE TENSION IN THE AIR WITH A KNIFE.YOU FEEL UNWANTED AND ARE ONLY INVITED BECAUSE IT WOULD LOOK BAD TO SOCIETY FOR US NOT TO BE INVITED FOR CHRISTMAS AND THANKSGIVING.MY CHILDREN LIVE NOT 15 MINUTES AWAY FROM ME AND 2 OF THEM HAVE NOT BEEN TO MY HOUSE IN 3 YEARS.SO YES I KNOW HOW BAD IT HURTS.

SOMETIMES AT NIGHT I GO OVER AND OVER IN MY HEAD WHAT DID I DO WRONG TO BE TREATED DISRESPECTABLY.IT NOW HAS A NAME.MENTAL CHATTER.MIX THAT WITH SLEEP APNEA AND YOU HAVE A WALKING ZOMBIE.I HOPE THIS HELPED OTHERS.TO KNOW YOU ARE NOT ALONE.I AM HERE ANYTIME SOMEONE NEEDS ME.

deborama2

9/30/08 7:13pm

I have been off work for 6 months. I am an RN and recently was in my ER for pain management. It was a terrible experience for many reasons. Most of my cooeagues are very caring and supportive. It was hard for mre to even go there in the first place. Now I will be comatose or half dead before I go back!!

Scooter

10/ 1/08 5:23pm

Wow, another ex ER worker. I worked in the ER for 20 years as a secretary. When I was a patient there while I was still working they found out what meds I was on and from that point on I was treated like scum. I wasn't even trying to get meds. I was there for an unrelated problem. Just like you I'll have to be unconscious or near death to go there again

deborama2

10/ 1/08 5:34pm

My colleagues actually have been very supportive, it was a doc that I had a run in with.............. I call him Dr. Dick!! LOL

Taking one day at a time

10/ 3/08 10:52am

Hi All, I have been reading everyones comments and posts and just had to add as I too have many health issues and do not have a supportive family. I have been on disability now for about 7 years, and it does not pay the bills. I too would love to go back to work and triple what I make now. I worked full time jobs since I was 16. I am now 40. The last 7 years or so I worked 2 and sometimes 3 jobe. I worked up until I was either crying or sleeping at work from the pain and the pills and also Sleep Apnea. I have alot of health issues, Arthritis in my back, hips, knees, and ankles, Disc Degenerative Disease, Sleep Apnea, Manic Depression with Bi-Polar, Bhroncule Asthma, and other things the Doctor is still trying to figure out. I have raised 2 children and a husband with most of these things going on. I currently walk with a cane and soon will be in a wheelchair I'm afraid as the pain is too much to bear, I rent a wheelchair sometimes now if I have an event to go to which is few and far in between. I too have had people stare as I park in the handicap space and have even had people make remarks to me as I get out of my car of which I have said, you don't know me and the troubles I have, would you like to trade for a day? The absolute worst thig is my family is NOT very supportive! They say get rid of some of the pills, of which would be a disaster as most of you know! They won't slow down walking in the grocery store with me, or wherever, which I feel is degrading and embarassing. I think my husband has been to maybe 2 of my many Doctor appointments with me. When I try to talk about how my Appointment goes I get the "we know, we know, you are in pain" speech back from my family. This also hurts me that they don't even want to know how the appt. goes! They don't care to hear how I am feeling on any given day, they give me bad looks if I happen to grunt or moan a little because I am in extreme pain at any given moment. If I cry, they ask what is wrong, and as soon as I start talking about the pain, they say "oh the pain thing" and walk away, these actions have me thinking why am I married to this guy??? I still do stuff around the house even though it hurts something trerrible, it bothers me just to do a simple thing as brush my teeth, the bending over the sink is awful! I could go on and on, but I have said enough, or you will be the next one to say "oh the pain thing" and move on to the next comment, lol. I am just glad to wake up in the morning! God Bless all who are going through what I am going through.

Thank You

P.S. Oprah here I come!!!

weezee

10/ 4/08 4:48am

Hello, this is my first post. Scooter, I can relate to everything that you've stated. As you can see, so many people are experiencing what you are going through as well, including myself. I am a nurse and loved what I did and was starting to get my degree in nursing. I worked on a busy & heavy orthopedic unit. Unfortunately, I injured my back nursing in 1998, and went through what everyone else goes through, physio, pool therapy, Chiropractic, Accupuncture, TENS, steroid injections, nerve blocks and so on. I had nerve root decompression surgery & L4-S1 fusion with graft in 1999. It unfortunately was unsuccesful, so I am now labelled as FBS or failed back surgery. I suffer constantly with at least 7-8 on the pain scale due to the unrelenting chronic sciatic pain & neuropathy. I also have DDD disease and OA. I have frequent flare ups. I've been on disability since 2001. I've lost my passion in life & career in nursing, a good income, my friends, and have lost some ability in being able to do the things I onced did. As you, many people look down at you if you do not work or state you are on disability. They do not see what you have to endure on a daily basis. Just because you smile, laugh, or even walk, they think there is nothing wrong with you. I do walk with a cane for support.They don't understand that chronic pain IS a disease! I take strong narcotic pain relievers to help me function throughout the day. I have terrible insomnia due to the pain even with sleep medication. I know my own family members try to understand my pain but they don't & often are unsympathetic to my issues & pain. I rarely don't discuss my pain to anyone except a selected few friends I've made who can relate to my world! I raised twin boys going through this & I'm sure they relate to me as mom with a bad back. I am often lonely, with no friends except a few online friends which I've recently met. I have gone for councelling in the past for depression, PTSD, feelings of guilt and the inability to cope because of the loss of my passion, which was nursing. It is like someone had pull my life from underneath me & I landed somewhere in limbo. I am still going through the grieving process even after all these years.

It has taken me years, but I've just had the courage to join a woman's group, so that I may socialize and feel like an active member of this world again and possibily make a few friendships. Having chronic pain can make you feel lonely, isolated, depressed, guilty, unworthy, lost, and like no one understands your pain. It has taken me years to be able to look at things in a different light and leave the anger & guilt behind most days. My family seem to be less sympathetic as the years go by. I know to them it's what else is new but they do try & it must be difficult for them as well to deal with. My inability to work has put a strain on my marriage and also in a big way financially. I am still married, for 28 years!! We are often short to pay the bills. At the time of my injury, I worked part-time 12 hour nights, since the twins were quite young, so that made my disability minimal. BTW, WSIB does not give me disability but "loss of earnings" and I am cut off at age 65! They too have caused enough grief within my life! I worry terribly how we will manage when we retire which is not too far off. I think of ways of how I could make a few extra $$ but no one will ever hire someone on disability since I am a high risk to re-injure. Besides, I would not be able to cope with most jobs physically anymore. I try and live for today because thinking too much about the future will only cause me to become depressed and I don't want to go there again. I keep trying to think positive because I hate negativity but it often creeps its ugly head! Life is difficult living with chronic pain but on ocassion, I can have a good cry in the shower, I struggle to get dressed, put on my make up, and walk slowly with cane in hand for my morning walk to the local coffee shop. I greet people on the way with a smile & respond yes lovely day. Meanwhile, I can be thinking I'm not sure if I can walk that far this am, because my sciatic pain is so bad that I could use a chain saw to cut my leg off right now & then I wouldn't have to deal with that pain anymore! But, we continue on our way & smile!!! Chronic pain is the most challenging thing I have ever dealt with. I keep telling myself be positive, hang in there, things could be worse! It definitely isn't easy. There are many of us in this boat. I am definitely a much stronger perosn for it. I've grown spiritually, and emotionally. There needs to more education regarding chronic pain. Pain clinics are just the beginning. PCP need to study & understand chronic pain as a disease & know how to treat their patients or send them to the appropriate specialty for help. There is a long way to go, but all of us can help each other as we are now!! I know there is no miracle cure for my pain. Learning how to cope, getting treatment & receiving pain control, getting emotional & mental support, can all aid with pain management & help us live as useful members of society. I think people need to realize that we do have pain, it is real, it is a chronic disease, we are not lazy or faking it ( well most people aren't! ), we want to work but are unable to & if we smile, we still have pain! Remember, we are NOT pain but people! I refuse to be identifies as so & so with pain!! Yes, life is difficult living with this darn pain everyday BUT life IS good and please try to understand us!! We need to support each other & not be looked down at. We just want to be happy like everyone else but we need everyones support in understanding this disease called chronic pain!!!

Ms. P

10/ 7/08 3:28pm

I know where you are coming from. I'm 55 and have been disabled with ostr-arthritis of the spine for 25 years. the pain can be horrible but you try not to show it. Some days I can't even stand being touched. Because I refuse to just sit down and not be active, I've had folks tell me that I must not be as disabled as I claim. LOL Little do they know that if I don't try to stay somewhat active, I'll just lock up and be able to do anything. Sometimes you ignore them and sometimes you have to say something to those fools who don't understand what the pain is like.

Beth

10/16/08 11:59am

I have not worked now in almost 10 years due to my Fibromyalgia and also wih the medication I take makes me so tired I wouldn't be able to hold down a job anymore. I tried 3 times now for disbaility but was turned down all three times. So my husband has been the only one bringing home an income now for 10 years. I have soooooo many people tell my " I'M LUCKY" for not having to work. Espcially my own family. I have 4 sisters whom all work say to me that they would LOVE to have the life I have. Are you kidding my?!?!?! They just don't get it. I try to explain to them that I don't work because I CAN'T WORK not because I don't want to work. They think I have this little perfect life where I stay home and take care of my daughter and my hubby goes to work and makes the money. If they only could just for one minute understand that I can't work. I wish I could. I wish I could so much. We are behind on ALL our bills. Are constantly threatened with eviction because we are late on the rent and people thing that I stay home because I want to. I have days where I can barley even get out of bed. Also even if I did go try to get a aprt time job with most places now they do drug tests before hiring. Even grocery stores do this now. So if 10 people go for a job, myself included and we all go for our drug tests who are they goig to hire, the people who tested negative or the person who tests POSITIVE for Oxycontin AND Xanax. HELLLOOO, I think we know the answer to that.

sherry

10/28/08 11:27am

I completely understand. I also work in a hospital. In the past I was more open about my chronic pain. I have Degenitive disc disease, scoliosis and arthritis in my spine. This has caused many years of back, hip, knee, neck and shoulder pain. I have had several surgeries, but have put off the back fusion recommended by the spine surgeon. Partly, because of fear of becoming a "failed back pt" and partly because I was told that I would not be able to continue working as a nurse. I like my job very much and would like to continue working for as long as I can. I try not to let my pain be the focus at work, but I am careful about things I do at work. I get frustrated though when, if I say I won't do something due to my back or if someone asks me about my back/pain then some people think I "whine" about it too much, but if I don't say anything some people say "I didn't know you were having pain, because you never complained about it." One co-worker was upset because I decided to work more 8 hr shifts instead of the 12 hr shifts I had been working. I was still going to work the 36 hrs/week, but just shorten my shifts to help my pain. Actually, my manager encouraged me to do this. She has always been very supportive. This one co-worker had the nerve to stand-up during a meeting and say to me in front of everyone, "You should just have a real back injury so it's more believable!" I get very frustrated with the people in the healthcare field that have such a narrow vision of chronic pain. I don't feel I should have to put on a "show" of limping, moaning and groaning so that my pain is more believable. Believe me wether I limp or not the pain is still there. If the theatrics would help alleviate some of the pain I would be doing it, sadly the pain is there whether I appear comfortable or not, I have just gotten very good about focusing on other things to take my mind off of the constant pain. Ok. I'll get off my soapbox, but I would like to say healthcare workers are the most synical & usually uncaring group of people I have ever come across. I believe we become desensitized about others' pain and suffering.

BluesGirl

10/30/08 10:50am

People have no idea what it's like to be in pain ALL the time.

Even taking drugs doesn't kill the pain, at least not for me.
It might dull it, or help me to be able to sleep comfortably,

but the pain is always there.

And it's not like we don't put enough judgements on ourselves

that we actually NEED the opinions of others...Sure if we could

work, we would! But finding a job where you can take frequent

stretch breaks, or lie down for an hour every once in a while

to recover from the pain of sitting in a chair for hours, or

standing up all day just isn't going to happen.

People can judge me all they want to. I know inside what

I'm going through. I eventually had to start working online

and that was the best thing that ever happened to me. No

one to talk back, and plenty of moolah out there to be made.

I can rest when I need to and not worry about what

ANYONE thinks.

I'm not here to try and promote myself, but if anyone does

want information, they can sign up for my newsletter and

decide if working from home might be the ticket they need

to restore the faith of others. You can sign up at

http://www.extremeprofitnow.com

And don't let what others think change the way you think.

You know what it's like to hurt constantly. I have not had

a pain free moment since January 22, 1991 and that's a

long darn time. But we go on. We don't take the coward's

way out, meaning suicide, we keep on keeping on. People

don't always see that side of it.

My best to all of you fellow sufferers out there!

suzyq

5/24/09 11:24pm

u are so right. i would love to be able to work. i miss it so much. i worked i retaill and management 4 twenty years.

JO

5/25/09 1:49am

Yes dear friends,This is Jo again.I have been reading a lot of all the comments.I usually write such long ones that people complaign.I can't say as I blame then either.Sometimes it takes me a couple of hours just to write a comment.But the long ones I hit the beginning of the paragraph and know instinctively what they are going to say.Why is it so easy for us to understand each other but the people who can break our hearts are clueless.

The ones you really care about their opinion they can slice you and dice you before you get the second sentence out.You get so flustered by their tone and by the accusing manner in which you are spoken to it shocks you .And every explanation just went out of your head and you sit there with a dumb or expressionless face.They also use that look as evidence that you are on so many drugs that you can't even talk straight.

Oh how many times I went to ny books by Devin Starlanyl and Mary Ellen Copeland, because I know the perfect answer is in there.But they won't even listen to it.

I really miss interaction with other people too.I was a hairdresser 21 years.I worked as a dispatcher for a year.Then I went to work at Mayo Clinic and they did me in.They have you and you do not even know it.

I was on a committee for the handicapped.I said did you know we have something like 36 disabled employees.But only 8 disabled parking places.I did a lot there.I worked so many different areas.I was stabbed in the back by my supervisor.For some reason she just had it out for me.I used to be called the peace maker at work.And I was.I could make people laugh and make the day go by even faster.

Now I talk to the pharmacist,people in the grocery store or doctors office just because I miss people so much.My primary also changed her ins.carrier twice in 10 years.Only it would be Dec.And I never got the letter until the first week in Jan. of the new year that I no longer have a primary.

So what gives.I have to start all over again.I think not.I finally learned how to say no.No I am not going to let you take all my medications away from me.No I am not going to have another emg or what ever.I did that, been there,... and they never find anything wrong that could be fixed by painful test that I already had.

Someone mentioned my name in their comment and that just about made my day.To be actually acknowledged helped to make me feel like yes I am a person.I do have value.

I did work 30 years and now cannot do anything because I have no quality of life.God Bless the person who said "Like Jo Said" It really meant a lot.Like you are my friend and you understand without explanation.My father always said do not believe anything you hear and half of what you see.He was right.He was such a good father but he died when he was 59.I am 58 so I am getting a little scared.

Maybe it is our fate to make it better for those who suffer a generation younger than us.And if that was my fate.Then I would be content in knowing that atleast by my courage I made it easier or better for someone else.Good luck to all and I pray for all of us in pain.Jo

Anonymous

7/ 6/09 11:01am

I so hear you. I do not think I have been judged, but I assume that I could be judged. I work at home and it is great, because I make it great! It is all about mindset sometimes, and what can create a good mindset but lack of pain? So WE take medications, and that helps us to do more and be more. But how do we get to work with a disability? Do we find different work, or make the best of it? Of course it is going to vary for each one of us. It is great that I can be here and take my medications and not be in a car or on a train (or worse, a bicycle lol). I am young and I have no children, and I work among a lot of work at home mother's who choose to be home because of their children. I do not have children, and when I take my medications and have a good day I can almost strand up straight and walk... so I fear that people think I am lazy or have no problems at all when I manage to leave the house (mind you that would be a good day only.) So how does everyone else see us? It hurts to think about what others assume or could presume when they are not in the situation. Everyone gets down and I just try to snap out of it, and hopefully someone can/will say something about it and I can snap on them lol. But one thing you have to remember Scooter, is that THEY do not see us on a regular basis. They do not see us at our worse, taking our medications, struggling to do everyday things, or struggling just to stand or walk more than 5 minutes. So remember that friend... some of them only see the best of us (when we are well enough to get out there and be our best) and in my opinion, when WE have a good day we are REALLY HAPPY ABOUT IT! lol They probably think we are on cloud nine because of our pain medications, they probably do not think for 3 seconds that it has something to do with our medications working properly and those with chronic pain feeling good for once. =) Hang in there!

canadasangel

9/11/09 12:14pm

I too would rather work than be on disability. I have been told that I do not look sick so why am I not working, I have responded by saying "I would gladly trade bodies with you for 24 hours", after which they may understand the pain, memory loss,tremors, hyper sensitivity to heat , cold , light, touch, and the list goes on.

My job was physically demanding and the pain was always there, I refused to give up until I was told NO MORE!!!. I loved my job and it kept me in shape. I agree that people should mind their own business or at least ask questions if they do not understand what I and thousands of others have.

Anonymous

11/26/09 9:49pm

I would also like to tell my story about a life with pain . mine started about ten years ago when i fell out of a lawn chair and broke my tailbone, ouch! over the next few years with the physical lbor job i have, i developed disc problems that also turned into degenerative disc disease and bone spurs on the spine. needless to say, this turned into severe depression ehich led me to taking pain killers, ehich led to addiction , which led to phobias then panick attacks, and now iam more miserable than ever. pain is real. it definitely rules your life the panick attacks are the hardest thing to endure. you think that you are truly dying. please share your comments.

Scooter

11/27/09 2:42am

My life of pain started with a broken taibone also. I fell down the stairs and ruined some of my discs. I've had five lumbar surgeries so far.I totally understand about the depression and anxiety as I have both. Antidepressants don't work because the reason for my depression will never go away. I'm very anxious about my future because my pain will only get worse and someday I will be bed ridden. I'm also anxious about money because my disability is not enough to live on. Also my meds cost a fortune. It's not fair we have to live a life of pain. I wish the best for you. We have no choice but to hang in there. Feel free to vent to me whenever you need to. It helps me somewhat when I vent. I hope you have as many low pain days as possible. Scooter

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