Hurtful remarks?

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Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 3/31/2009 2:49 PM (GMT -7)   
I was reading through several posts today and as my medicated brain started to wander...lol rolleyes I was thinking about how unkind people can be toward those of us who are suffering. The thread that really got me going was titled "But you don't look sick" and in there are so many incidences of thoughtless behavior toward people like you and me.

Do people really mean to hurt us? Are the just stupid? Thoughtless? I'm not sure. I would hate to think I was ever like that so someone else and thinking back I don't think I was. What is it with people in the medical industry that gives them the right to denigrate us? Are they so jaded by seeing sick people every day that it no longer means anything? I am so lucky that my doc is a local "country" doctor and his staff is compassionate right down the the last bookkeeper. But that's a rare find, I've learned over time. And I do know how lucky I am but I did run into a nasty remark out of the blue recently. The gals at our local pharmacy know me as does the owner and they always make sure I am give the best care and service. One day when my insurance company was giving me issues on why I take oxycontin the nicest tech, who has always been so helpful, leaned over and said.. "oxycontin is supposed to be for people who are dying of terminal illnesses". It took me a few minutes to get what she was saying but then it stung! I flashed back to so many posts on the forum of rude people and their hurtful remarks. Do they think I like taking this crap??? The side effects, the looks I get if I have to tell someone??? I am a respected human being in my field of work and around the people I know. I'm not a whiner, a druggie nor a fake. I hate the way my health has turned out. I often cry when I have to fill my pill container each week but then remember how lucky I am to have insurance to pay for it.

The reason for this post isn't a personal vent or pity-party but to give us all a place to share hurtful comments thrown our way and some thoughts on why we think this is happening. IMHO, I feel the issue with pain medications, and oxycontin in specific, lies square in the lap of the media. If they would stop inflating stories about a tiny few who have become addicted or a pharmacy that was held up we would not have such a miserable time of it. But for the sake of selling the news those of us who need good pain relief are denied and left to suffer without help.

Is there a good side to all of this?? I almost hate to call it "good" but I am very blessed by all of the wonderful people I've gotten to know and friends I have made here on Healing Well. I'm not advertising for this place, just stating facts. I have met some of the people here in person and they are just real. They are our neighbors, the man who works at the grocery store, the teacher at the local high school and a kid of only 16. They are single dads and retired military folks (to whom we owe our freedom) and the housewife trying with every fiber to raise 3 lovey children...probably the hardest and most thankless job of all. So yes, I have many blessings because of the pain but....

I will leave it there for you to share your thoughts and ideas....

Loves!
Chutzie wink
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/31/2009 4:35 PM (GMT -7)   
Chutzie,
Always so nice to read a post from you!! And I wish I could make little animals from all these letters! I'm only good with the real kind (of animals!).

Ok, to the topic at hand. Well, one aspect of it. Since I've been on both sides of the health care "counter", as have many here, I have to say I don't think the overwhelming majority of people who go into health care aren't compassionate - at least to start. Oh, a small percentage aren't, and for some it's a job/job security, but by and large I think people gravitate toward heatlh care becasue they DO care. And then they're put into "the system".

I don't mean that to be a cop out. The "system" is made up of people, but mostly the policy wonks, and lawyers who write policies, and next thing you know doctors offices and hospitals have mostly a CYA mentality. And all the employees are trained into a system which sees sticking to policies and procedures an absolute mandate. I can't remember who it was that posted about getting to their specialist appoinmtment without having filled out the intake forms which he never received, but arrived early enough to complete the forms, but wasn't allowed to. Even though he was standing there on crutches. That's exactly what I mean. I have a hunch the people who did that started out caring to some extent about people, but got to work and learned the office procedures and were told never to deviate. And they don't question, especially office staff. Yes, they really are busy in most cases. Overwhelmingly so. The paperwork demands, especially with insurance companies and authorizations, stack up and up and up. And you stay after hours frequently to complete the paperwork. Sometimes even coming in on weekends. For most people, the pay is also not that great.

Ok, I know the specialist doctors make $$ but their staff don't. And nurses can make relatively good money, but they work their tails off for it, often having more patients to manage than they should.

Now I'm NOT justifying the treatment we get. I get it as a patient, too. And I'm mostly a patient now, not a worker. But I don't think us staying in this "we-they" stance helps US. I'm having to learn that, too, because I can be pretty demanding. And it's not that I've been wrong. I've had procedures and scripts and whatever get put off needlessly - and I've known it's just needless or people who are overworked - and some doctors I've left because of that. It's unfortunately limited some options for me. It's not right. It just is.

So in the future I am going to try to use the "kill em with kindness" approach for selfish reasons. And recognize I may not get an in-kind response. But just maybe on a few occasions I will find a way to touch the right button with that health care person, the one that likely made them want to do what they're doing. Because behind it all I think many of them even start to hate it, but have no choice but to keep the job. So probably more than anything we're the brunt of their job dissatisfaction. Am I making any sens?

I hope I don't come off as defending bad, hurtful behavior. Trying to understand it is not the same as defending it.

BTW, I heard Senator Ted Kennedy's remark on the news how he's spent the last 10 months of his life experiencing the health care system up close and personal. And he has the resources to get the best of the best. He really wants to see heatlh care for everyone in some form or another. But I'll bet his experience as a patient has enlightened even his thinking. Like in the movie The Doctor.

Ok, I'll quit rambling!!!

PaLady

BrentE1961
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 4/1/2009 11:40 AM (GMT -7)   
I have found many people are simply ignorant. They are not meaning to be rude & hurtful, but in their ignorance they say & do things that are quite inappropriate. A few are indeed intentionally mean, though. Heck when I caught my wife (now ex-wife) cheating on me 18 months ago, one of her excuses was what she described as my "broken back" and that I wasn't as much "fun" as I used to be - as if I had any choice in getting hurt.
47 YO Male, chronic back pain. Herniated disc L5/S1 2003. Discectomy with partial laminectomy 2004. Now told I have Failed Back Syndrome with discogenic pain.


Pain level varies from disturbing to nearly intolerable.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/1/2009 12:14 PM (GMT -7)   
This is an excellent topic Chutzie and three times I have tried writing a post, and then I go back and delete it all before I submit it!I do have some things to say about this topic, but I will have to take some more time to get thought out first.
BrentE1961 I understand exactly what you mean, no one want to have a CP with a bad back! I mean who in their right mind would chose to have something like this?

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/1/2009 12:34 PM (GMT -7)   
A long time ago I believe we had a thread regarding the awful things that medical
personell, friends, nonfriends, and relatives have said to us. I think I started the
thread. Anyway, I tried to write some things down and found that it brought such
anger and pain that I just swept those memories back under the carpet and stomped
them into dust and ashes.

I can say this: As the years have gone by, I've developed armor against mean words.
I don't care what people say. And since I really don't care, no one says anything.
I do know when to leave a doctor. I don't wallow in the bad treatment, I just ask
for the key, Lee ... and set myself free. (thank you to my beloved Paul Simon)

Chutz,that clerk needs to be reported. Brent, your wife needs to be reported too ...
to whom? God, I guess.

I'll probably try this out later. I dunno. I'm like White Beard regarding the subject.

Pamela

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 4/1/2009 1:18 PM (GMT -7)   
Brent,

I am so very sorry. I know the feeling because it happened to me. In my case I was glad to see him go because it was a 20 year marriage of misery for me. But in your case it sounds like she was in it only for the good times. That just hurts. I do hope one day you find someone who loves you for who you are. I happened for me and it can happen for you too.

Hugs,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13456
   Posted 4/2/2009 4:30 AM (GMT -7)   

Hello Chutzie, oh I am so glad to see you posting. Sure hope all the sickness is over with and that you are feeling alot better.

I think this is a terrific post you started. I am with you on this one 500 %, the media is greatly responsible for so much hype over oxycotin. They went after it like a dog with a bone, they would not give up on the subject. Every time you turned the tv on, some darn reporter was on there yapping about it, we caught this 3 times a day on local news. Even on the internet it was the same way. This went on for months and months. They did just as they intended to do and that was get peoples attention about this drug. That arm reached a very long way, it didn't just reach people like you and me it reached the drs and scared the living daylights out of them. No one will ever be able to convince me dfferently about this. It caused a domino effect across the country in many drs offices and pain mgt offices.

My niece lives back in Ky and she says the drug situation is really bad back there over prescription drugs. She was telling me that the legal system is the reason for the state to be in the shape its in. Drug offenders do not get much more than a slap on the hand. They spend a few days in jail, pay a fine and then in a couple months they are back in jail. She says its like a never ending cycle. They are not held responsible for their actions in a manner that really gets their attention.

I am very lucky like you Chutzie, I have always been fortunate enough to have caring drs and not have to deal with desk dragons to get anything done. I read these stories on the forum and it just burns me the attitude of the drs and staff towards their patients. One thing is quite clear with some of those places, they have forgotten we are why they have a job and paycheck. All offices have rules and procedures. That has absolutely nothing to do with customer service. Being a busy office is a poor excuse for unprofessional behavior and conduct towards patients. Its not a patients fault the dr is scheduling 2-3 patients for the same appt.time, this is nothing but greed on his part. This really is becoming more & more  of a common practice.

Thanks for stating this thread......Susie

 

                                                                                                                                                        



Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 4/3/2009 3:04 PM (GMT -7)   
Some hurtful remarks, come because someone is trying to help...sometimes they come because of the stress and life issues they have...and then others are just plain mean and that is exactly what they intend...

The most cruel thing...I was coming home from a wedding...it was only 7 days post op(and I had flown there on 2nd day post op, STUPID)...I was on 80 mg prednisone...I looked horrid, felt horrid and was in so much pain...4 young men on an airport shuttle bus, laughed, pointed fingers and took pictures of the funny looking short woman...with the big red face...it still hurts...I am still ashamed...and will those pictures (took with multiple phones) show up...I dread the day...

In all cases though...if anyone had just stopped and considered their impact on their fellow man...maybe it didn't have to be so hurtful...I am still hopeful...
"The earth laughs in flowers"


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 4/3/2009 4:49 PM (GMT -7)   
I am so sorry you had to endure others thoughtless stupidity! ((((HUGS)))) It's amazing what we sometimes think when we don't know the facts. about 10 days ago I had some major dental work done...took 4 hours in the chair. 3 days later a huge bruise showed up on the right side of my jaw. It looks like someone either punched me or I took a fall but it is totally innocent. I was at the store today and didn't realize til I got home that people were not talking to me as usual. Clerks, people in line...there is always something to say. But I now realize why I got those funny looks. It was like my bruise was contagious! And all for some dental work.

We all have looked haggard at some point, even the idiots out there. But what keeps me going some days is to live long enough to see them endure some of what we do...lol

Chutzie devil
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/3/2009 5:26 PM (GMT -7)   
Becoming, im so sorry about what happened....I have had similar circumstances.....Due to a lawnmower accident as a child, i lost a toe and have bad scaring and disfigurement of the foot, leg. I grew up feeling very inscure about it and it never failed to attract peoples stares and comments. Even grown adults would make comments about it. It left me emotionally scarred. People just seem to be unable to deal with things that are different then themselves......

I hear you all about the media...Here in florida, i recently saw a thing on the news showing how florida doesn't have strong laws, and the media set up hidden cameras at some "pill mills" showing people comming far, from the Carolina's and what not for drugs. They showed them litterally crushing the drugs and snorting them right there in their cars, showed them entering the clinics with cups of "clean" pee...it was horrible to see.
Jan. 2009, complete hysterectomy, diagnosed stage 4 endometriosis & adenomyosis (age 36)
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-2009, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/3/2009 8:04 PM (GMT -7)   
You know it used to be I hated to stand out, I always wanted to blend in and not be seen as different or anything, now I don't purposely do anything to stand out, but I don't hide or go out of my way not to be seen either! Just today I was eating in a fast food place, and two young couples, early twenties I would guess, I assume they were U of I students or from Parkland College anyway the two young ladies actually pointed over at me and (it was at 3 in the afternoon so there was only just a few people in there eating, and there was nobody even close by me) ( By the way I have a big full pure white Santa Beard and long Brown hair I wear ing a pony tail) anyway they were all  laughing and the one young man actually was stroking his chin as if he had a beard and the one girl flipped her pony tail. I don't think they knew that I saw them, so like I often do in the parking lot getting out of my car in a handicap parking space, I looked directly at the couples and gave them a big smile and waved at them! They quickly turned around and the one young lady looked embarrassed! I personally thought the whole thing was rather funny! But I also thought it was sad that these young people didn't have better manners than that! I really am amazed at how rude some people can be!

Any more I find satisfaction in acknowledging the person with the bad, rude, behavior with being kind to them, a smile and friendly wave, letting them know I see them. But not letting them know that their behavior bothers me! I guess it is my little indirect way of telling them they are acting inappropriately!

White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 4/3/2009 9:10:34 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13456
   Posted 4/3/2009 8:41 PM (GMT -7)   
White Beard, I too was always one that just sort of blended in with the crowd. Once my sister and I both were in a fast food place too, young adults hopefully one day to be, were making fun of my sister and I because we both had oxygen tanks strapped on and walked with canes. The guys were doing the grabbing their throats like they couldn't breathe and such. As my sister & were leaving, they were standing around outside and one had an unlit cigarette hanging out of his mouth. I purposely went by him and stopped right in front of him and said "little boy I am old enough to be your mother so I will give you some motherly advice. Put those smokes away because it could be you sitting in there with an oxygen tank strapped on in 10 yrs because of smoking". OMG, it was priceless, it was I am so sorry ma'm and the beat red faceswas great. Sister had got in the car and had no idea what I was up too. She wanted to know what I said to them and I told her. We had a good laugh over that one. You know its a shame we have to be so thick skinned at times...Susie


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/4/2009 12:45 PM (GMT -7)   

I can't believe people young and old would ever be so rude!!  But then we all know they are out there.  I get alot of comments because of my hair.  I have hair done to my butt that is 80% silver.  I'm only 39 its been graying since I turned 20.  Its not gray or stringy gray it shiny silver.  Most the comments I get are "You need to dye your hair it makes you look older then you are"  I have even had some old lady walk up to me and say "You young people pay to get your hair done to look like ours when we worked for it" 

I get these comments so much that i just put it into a ponytail.  My husband always pulls it out of the ponytail becuase he says he loves my hair.  People can just be plain ole mean about ANYTHING


Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/4/2009 4:54 PM (GMT -7)   
LLPLUV

Call me old fashion or what ever but I never could understand why people dye their hair to cover up the silver or gray! I have a friend out in California who dyes his beard ( for Gods sakes!) he dyes it dark brown other wise it would be silver gray! I personally think it is vanity! Pure and simple! ( I hope I haven't offended anyone here) but isn't it natural for a persons hair to turn? So why on earth would you want to hide it? After all it doesn't change your age! and if it makes you look younger by dying it, then are you not decieving people? ......Why would you want to do that?....... Honestly .....I have just never understood that! I say "here I am! Take me or leave me!" or as my mother used to day " if you don't like my peaches then don't shake my tree!!!" or whatever saying anyone might have! I am who I am nothing more and nothing less!

Sorry Folks!! LLPLUV you mentioned a topic that struck a nerve with me!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/4/2009 6:58 PM (GMT -7)   
Thats ok no apologizes nessesary. I agree with you on this subject. I like my hair its soft and shiney....
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/6/2009 3:34 PM (GMT -7)   
"Life can be so long
And you have to be so strong."

John Lennon
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 4/6/2009 4:21 PM (GMT -7)   
I just posted some of my "complaints" on this subject on the fibro forum.  My weight fluxes w/medications, especially on high doses of prednisone (which I've been off/on for years, high/low doses) and it never ceases to amaze me how many of my coworkers comment on my physical appearance, especially weight loss periods.  A man recently--totally true--told me, "you look smaller, much better," Really? Are you kidding me!  I told him I was slowly loosing my ability to control my bowels.  There was a "frog face" joke going around a few years back, I think people thought they were laughing with me, but deep down it bothered me; somehow if you bring it up, people think you're not being a good sport.

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/6/2009 4:34 PM (GMT -7)   
BigLucy I get the same comments. I swell with edema alot. I have a heart issue, I take lasix twice a day and only helps at times. I'm not a large person by any means but people can be very mean. If only they knew how much of a struggle it is to have 3 different sizes of all your clothes depending on what your size is that day. I had a sister in law look at me and say "Wow you've put on weight it looks good." But I knew she was being her typical nasty self. But all I think is I can loss the weight but I have all the looks...LOL She lost hers...lol
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


Ms Kitty
Regular Member


Date Joined Apr 2009
Total Posts : 37
   Posted 4/6/2009 8:51 PM (GMT -7)   
Chutzie,
     Your post made me think back a few years.  The company my husband worked for suddenly changed insurance.  We had less than 24 hours to pick a new primary care physician out of a book.  Fortunately someone I knew had just done that and gave me a name (thank you God). So I make an appointment.  The appointment according to my insurance was allowed 20 min for a new patient.  An hour and a half later after a long discussion I was thinking Great, I lucked out. And then he said "I do not feel comfortable writing narcotic prescriptions". I panicked. We finally worked it out that I would go to the pain center, they would make any adjustments to the dosage, then he would write the script.
   It certainly didn't make any sense.
 
Ms Kitty
Severe diabetic neuropathy, 3 stents, arthritis, R/BK amputee
 
Duragesic pain patches, Vicodin ES, Elevil, insulin and lots of other meds


Ms Kitty
Regular Member


Date Joined Apr 2009
Total Posts : 37
   Posted 4/6/2009 9:08 PM (GMT -7)   

Bre nt 1961

I was so sorry to hear about your wife - that really was a low blow.

My husband of 43 yrs died in 2005 and in 2007 I decided that I didn't want to be alone the rest of my life.  I went on EHarmony and met a wonderful man.  I loved my husband dearly but this man is my soul mate.  I knew going into the relationship that it would not be easy.  He has many medical issues including diabetic retinopathy.  He is blind in one eye and his other eye is failing -  he is now legally blind.  He cannot read his glucometer or blood pressure machine.  He has had a series of mini strokes - and it does not matter to me.  It is a pleasure to take care of him because we love each other unconditionally.

Just because you got a moldy orange it doesn't mean the whole bag is bad.
 
Ms Kitty
Severe diabetic neuropathy, 3 stents, arthritis, R/BK amputee
 
Duragesic pain patches, Vicodin ES, Elevil, insulin and lots of other meds

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