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Tuesday, 2 February 2016

The Real Rheumatoid Disease: You Mean It's Permanent?

Usually the pain and worry of rheumatoid disease (RD) is not a topic on my blog. In a change from positive strategies and ways to cope with chronic illness I'm going to talk about the worries that arise as we age with RD, based on my point of view as well as a few friends.

You can become discouraged with chronic disease. Even when you are doing everything right, enjoying life and being productive in ways that are important to you, you wake up every morning and RD is still there. That's why the groundhog is our symbol. 

Since this year's topic for RD Awareness Day on February 2 is The Real Rheumatoid Disease, here are some concerns expressed by women who have been dealing with it for a long time.




RD just never stops - it's as determined and persistent as the people who  live with it are. The day never comes when we can relax and feel on top of our health.

Polly's view

I think of Polly as my RA twin. We were diagnosed at the same age and have a lot in common. Here are some comments from her:

"Who knows when they're first diagnosed that Rheumatoid Disease (RD) is more than stiffness, an 'old persons disease' or claw-like fingers?" 

She says that people think you get RD when you're old, but it’s not always true. You get RD when you're young and you're in shock. I was upset lately when a doctor said to me "We don't see hands like yours anymore." 

A doctor told her, "Well you know you're 65 and you're going to get something..."  She told him that she's "had something" for half her life. Her plan is to switch doctors and find one less dismissiveSometimes she gets tired of fighting it all.

Julie is a bit older

Julie says try being in your 70's!! She always has good advice, and is pleased that most of her doctors haven't given up on her and keep trying to help.

She feels that her long-time Internist is the most apprehensive at the same time as she appreciates his help. He's the person who has seen her going down-hill and sees all the records from other physicians.

I like her definition of old:
"I don't consider people in their 60's elderly. 
I have read that 65 to 75 is "Young" old
75 to 85 is "Old"
and 85+ is "Very" old."

She agrees with Polly that other diseases or conditions piggyback on the inflammation of the RA or the medications that we have taken.

Polly

Polly thinks we're not rewarding to our doctors anymore because as RD damage and effects start to pile up there isn’t much that can be done.  
  


Ally has complications

Ally worries about the healthcare system making life harder for those who have chronic or terminal illnesses. (She's making a statement here about COPD and Emphysema.) 

"It is just the opposite of good medicine for the patient, to increase stress, discomfort. Waiting for test results that take forever to be processed is not good medicine. They live out of a book and we live out of our bodies.

She also sympathizes with doctors who have protocols on how many patients they must see in a day. She thinks that their constant running does not equate to good medicine

Jane

I just had my first lung scan.


"It's terrible when the doc is aware of a problem like crackles in your lungs but doesn't tell you !!! I am so tired of fighting for things now. I really feel like just giving in."

Back to me

We're no longer young and when we were diagnosed either the treatments were less effective or we could not tolerate them. It's good news that treatments are so much better, but there are still people around who can look back at "the old days" and who are worried about aging with RD. That's a topic where you don't see enough research. Clinical trials are notorious  for not including people over the age of 65, and also excluding those who have more than one health problem.

With the emphasis now on evidence based medicine that exclusion of the older age group is bound to create some doubts about the best treatment in the future.

In fact there have been studies showing that RD is treated less aggressively in older patients.


Bad as they may be, my bones are better than his bones
Custom apparel by Cathy Beattie

This post is part of a blog carnival with RAWarrior, Kelly Young. There are 13 contributors.

The Twitter hashtag for RD Awareness Day is #TheRealRD







6 comments:

  1. Always great blogging Annette. You tell it like it is! Another thing the drs say is "get used to not having the use of your hands". Yes, that's a picker-upper.

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    1. That's awful. I've seen older people in the hospital with severe pain and undertreated for RD. It's dreadful. Great Blog

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    2. Thanks Paula and Cristina. Glad you liked it. It's awful to hear that a doctor said you should get used to not having the use of your hands Paula. Very insensitive

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  2. Oh my goodness, I love that skeleton picture. Your blogs always give me a good chuckle. Thank you I so needed that today.

    Paula, I wonder what the doctor might think of being told they should get used to not using his hands? Not very good I presume.

    rick

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  3. Those pictures help to keep me going. The toy collection at our house just keeps growing. I have another one you'll like one day. I posed a skeleton in my doctor's office and he took a picture of it himself for the grandkids.

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  4. I had a terrible time in the hospital trying to get people to recognize that I have rheumatoid arthritis! and trying to explain that this autoimmune disease is affecting all body functions. (A comment from Julie, just home from the hospital.)

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