I can give my opinions for what they are worth.

Society has changed. No time, no attempts at understanding or educating. Most of all no empathy.
Time & time I've seen situations that leave me stunned at the lack of care or compassion or simple offer of help.
More surprising is the reaction when help is offered.
From helping a women disabled to her car, to allowing a sick man with 2 items in front of you, to offering help in locating an item who just lost his wife & never had to really shop....as the cashier taps her fingers while the man barely holds back the tears, few dollars to help pay for a script that she obviously needs..... I could go on but you get the point. What the heck?

Not the way I remember it growing up & I'm positive my parents would never have turned their backs.
Is it they simply don't want to believe or acknowledge until it hits to close to home?
Hype over pharmaceutical doesn't help.
These doctor shows, well they focus on ratings when they could make such a difference.
Over & over I see "natural" remedies or foods to combat this or that.
People don't tend to educate & much simpler to take the good docs word for it. People do not want to believe such painful disabling things exist.
Then again doctors don't acknowledge the diseases in its entirety so what do you expect?
Now I recall along with Micheal Jacksons death came the push for narcotic control & with each celebrity's death caused narcotic therapy to be questioned. Some of this came from my doctors mouth.
As he informed my husband & I changes were coming.
Doctors in general have little training in CP & treatment another draw back there.

Bottom line is ignorance & people simply not wanting to believe things exist that can cause such nastiness.
Fear, lack of empathy, misinformed.....
Scary how easy a doctor on TV can brainwash the public.
We don't think for ourselves that would require time & energy.
Till this day I hear oh RA is an old peoples disease.
Till this day I'm told if I only tried this.....
I'm pretty private don't care to share but those do know & have comments only frustrate me. If it was so simple don't you think we'd hear about it if it worked so well?
Do we want to remain sick & in pain?
What are we ganging from it? No one pays my bills, cleans my house,
Does my work...........walks of every life hit with illness. It does not have prejudice.
So true "scientific illiteracy", starting with our very own medical community. How many doctors down play the pain & symptoms? Or disagree on medical disorders? Fibro is a good example. I wander how many still consider it a "waste basket disease"? How can the public take it serious. It's all frustrating when your living it every single day so we simply acknowledge the lack of from others & share with those who understand, like here.
I have no doubt if these people were put in our shoes they'd think a little different.
I recall a video on U TUBE a made on the daily life of someone living with RSD, very painful & not a lot of options.
I found that very hard to ignore. Touched my heart & I sure felt for her.
That was before my DX. She put herself out there & I understand why.
Took a lot of courage. Thought about doing just that with my first doctor. Sadly enough probably wouldn't matter.
Choices to educate, acknowledge & care.
Sammy

Yeah , I would be surprised to hear Oz brought a credible light to this.

I think the media plays a big part in all of this. You will never see a magazine article, or a movie, or a talk show interview with someone that takes pain pills in a responsible manner to improve their quality of life - or to just make life bearable. No, all you see are stories of people who abuse(d) their pain meds for their pulled muscle or their recent surgery. People who lie, cheat and steal to feed their addictions. They don't understand those of us that suffer every day, and its not going to get better, only worse. They don't understand a chronic or progessive condition. Most don't realize that many of these conditions create other medical problems as well. They think we should exercise, eat right, and change our attitudes, and how many of us have done just that to no avail??? When I was first diagnosed, I dropped 50 lbs, worked out twice a day and went to physical therapy twice a week. I've kept the weight off, still do my workouts, though they have changed over the years -less impact, more stretching, and attempt many other "holistic" treatments that MAY help. I do this because I do not want to live in pain, I don't like taking medication, and I don't want to give up any more of my life to my disease. Its already taken so much from me.

My 2 cents.

Jnufish

hey there don't be disrespecting my kale again....or I'll post another recipe that you all do not want to read.

i think it's just that most folks do not have an auto immune disease. most folks do not know anyone that has an auto immune disease. and most folks have not woken up in my body for 8 years with the flu raging in every joint and thought well this isn't too bad. i might be able to use the toilet without the walker or canes...maybe if its a great day I'll be able to wipe.

folks live within the bubble of their reality. including the script writers.

depot

Perfect "bubble of their reality".
Better hold on tight never know when that bubble will burst.
I agree media does no good on the informative side. More misleading then anything.
Even with RA in my family I never realized everything at risk.
I've cared for my sister after numerous surgeries & stroke.
I knew about the pain, limitations, destruction but that's only the beginning.
She has numerous deformities & surgeries. Yet keeps going to some degree. Top notch doctor. His opinion is if she had not forced herself to move she be much worse & in a wheel chair years ago.
These treatments we have today were not options when she was diagnosed.
To many days she was unable to lift her head up.
Big age difference yet I remember way back when as the family provided care. Watching, caring, remembering darn right I was beyond scared with my diagnosis.
She's very bitter now & just has nothing to do with most people.
She was excused from being hurtful & nasty as she was the "sick one" in our large family.
I refuse to let anything control me to that degree.
Come to think of it back then I don't recall such strong opinions.
Don't recall a lot of what we see today.
Sammy

Depotblue, I had to LOL!! I thought it was just me!

Very very interesting fact about KALE - spelled backward is the sound one might make when they place it gently in their mouth -

E LAK !!!!!!!!

Peace
Bluedogs2

ok Mr. Bluedogs Man, you asked for it :)

.CREAMY TUSCAN WHITE BEAN SOUP
in pan put some olive oil
1 medium yellow onion, chopped
3-4 cloves garlic, minced
2 teaspoon of basil fresh or dried
2 teaspoons fresh or or dried sage
pinch of salt
2-4 cups no sodium vegetable broth
3 cups white beans like Cannellini
1 cup chopped sun-dried tomatoes
the night before soak 1/2 cup raw cashews in 1/2 cup water
5 cups shredded oh my god dogs and cats are mating in the street kale
grind some Pepper
add some: Roasted red pepper flakes

1. Soak the cashews the night before
2. put some olive oil in a large pot. Add onions and garlic, and cook until translucent. Add the basil, sage, salt, broth, beans, and tomatoes. Simmer, covered, for a while like 20 minutes
3. Meanwhile, combine the soaked cashews and water in a blender and blend until smooth. (don't use unsoaked cashews will not work)
4. Add the cashew cream and kale to the soup and mix to combine. Cover and turn the heat off. Let it all percolate. let the kale wilt

Yummy :)

"Why is taking medication so wrong?" Personal opinion: It wasn't wrong when the poisons used to try and control RA and other auto-immunes were the only alternative to suffering hopelessly. Now, with the emerging gene therapies, it may actually be wrong or will soon be wrong. Why do I say that? Because the pharmaceutical industry (let me finish please) being led by bean counters and individuals focused on nothing other than personal financial short term bonus/pay using attorneys and intellectual property laws squeeze out the most profit possible without regard to helping those suffering. I do not by any means intend any indictment toward the scientists working toward cures/helps. Of course those that run the monopolistic enterprises say, "It's too expensive to do the research, trials, marketing, etc", to which I say BULL. It's my opinion those with the skill would do and pursue the work anyway. I take the poisons as do most of you and I'm going to continue to do so until either remission, cure or death. I can control the swelling, inflammation, pain quite well with diet but as a poster on this thread stated to me correctly, "the disease continues". It does just that. I hate taking Mobic, Plaquinel MTX and Humira. Y'all know what they do to you and how they make you feel. My academic training is in Economics and Business (obviously not English), I've been in the world of electronic media since 1990, my job is helping businesses make money and I'm good at it, truly a certified spin master. The oddest thing about me is that I have never been motivated by money, I'm just good at it. I understand how things work now and how they've evolved into the present day system, human motivations, greed, fear, all of it. Behavioral Economics, Behavioral Marketing, absolutely nothing new there. Has it made me become quite cynical, yes it has. Yet, have faith folks, humanity, kindness, love and doing the right thing does eventually win in the end. It just ****** me off that you, me, all of us are suffering more than is necessary thanks to greed. Humanity is getting better though, figures released this week said that global extreme poverty has been cut in half the last decade...not much above the level of extreme but still significant improvement. I don't mind people trying whatever to win the battle with their ailments, including taking medication. I do care greatly that people suffer what could possibly be needlessly because of greed.

Speaking of salad, here's an odd one, I was eating lots of fresh romaine but then I started taking MTX. That changed something in my gut and now if I eat it I've the feeling that a baseball is slowly working it's way through my system. Anyway, rail on about folks railing, I feel better.

In my opinion, these are the people who have no idea what it is like to be in constant pain and have no energy. They think its their regular tiredness and being lazy. They don't realize how serious, painful and depressing these diseases are!

There is a really good book called "Bright-Sided" by Barbara Ehrenreich, who had to endure the new agey, prosperity thinking, positive psychology onslaught when she was diagnosed with breast cancer. She goes on to talk about how our entire culture has been influenced by this magical thinking, and even played into the Wall Street crash and other disasters and crises.

Lots of interesting and thoughtful replies.

Lambchop, thank you for mentioning the Ehrenreich book. It's on my list of things to read.

Nonightshades, as a certified spinmeister, where do you think the widespread belief on gin-soaked raisins and the like started, and why has it spread so far and so fast? I share many of your sentiments about the bean-counters in the pharmaceutical industry. At the same time, we can now control high blood pressure, replace insulin and clotting factors for diabetics & hemophiliacs, mitigate the damage of RA and MS, cure Hep C, and knock many cancers into remission, thanks to the scientists who have spent their lives on drug development. Why are they not hailed as heroes? Why are people who use the fruits of their lifes' work criticized? It is a schizy situation for sure, combining such avarice with scientific triumph, lives saved and extended with unbelievable price tags. At the same time, why are so many throwing out the bathwater without first removing the proverbial baby?

I found out how perceptions shade people's views on those with chronic diseases.

When I used to say tell people that I had RA - I'd get all the old advice about how Auntie Sue cured hers by eating whatever. Or the dismissal of it as just plain old arthritis, take some Motrin and suck it up. Of that look from employers as they wondered if I could physically do the job. (do think a major flare was partly responsible for one contract not being renewed)

Now instead, I tell them that I have multiple food allergies (as currently some of these SEEM to be the root cause of my RA and IBS) now I get responses such as ''me too!' or 'gluten makes my joints hurt too!' (ironic, since I am NOT affected by gluten) it seems very politically correct to have food allergies these days. And EVERY normal health conscious person seems to think they have one. Granted, they haven't bothered to go through testing - not do they have to carry an epipen like I do.

So while chronic disease seems to make people look down upon the patient - chronic hyperchondriactism and blaming 'evil agribusiness' for turning foods into toxins seems to be wildly popular.

alto, gin soaked raisins, hmmm, guessing maybe a way to justify alcohol use? Kinda of like southern Baptists not speaking to one another at the liquor store. The scientists should absolutely be praised as heroes but they usually are not the ones seeking praise or money. Money, money money; it drives too much of everything. Shoot, look at the person polling #2 in the GOP right now, the only positive he talks about is how much money he's made.