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 dismissive. Sometimes 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

Let Me In on Rheumatoid Awareness Day

February 2 is Rheumatoid Arthritis Awareness Day and also Groundhog Day. We're nothing like the groundhog. Every morning when we get up we can see or feel the shadow of our Rheumatoid Disease. Though treatments have gotten better and outcomes have improved the percentage of people who go into a remission and can forget about it is not high enough.  For those of us not in remission, as the years pass we can get better and better at dealing with it, but it will not go away after six weeks. 

Here are some things we need in the detection, treatment, and accommodation of Rheumatoid Arthritis:

Health care professionals need to have increased awareness of RD so that they can quickly recognize the warning signs and send patients for early treatment that will save their joints. Disease that affects joints,bones and muscles does not receive enough study time and practical experience in medical school even though it is commonly seen in clinical practice.

The general public need to know that Rheumatoid Disease is a medical emergency that has to be dealt with quickly. It's not imaginary, and it's not easy for patients to deal with but with early treatment there is more chance now than ever of obtaining remission.

The design community and those developing building codes, as well as builders could make our lives easier with some changes. This need for improvement became apparent 30 years ago when I was trapped in a washroom with this type of "lock" to ensure privacy.

This is actually bigger than the one that trapped me.

It was after hours in an almost empty community center and I just couldn't turn the little knob with my sore and swollen fingers. It was embarrassing to feel panic about something I felt I should be able to do easily.

Washrooms seem to be constant sources of trouble. Sometimes they're locked and it's hard to turn the key.

Just yesterday at a seminar the door was so heavy I had to open it a crack and use my foot to hold it while I pushed harder to get in. It was like a trap. This door was in a major hotel where  I have been for conferences about chronic illness in the past. The meeting room doors in the hotel are equally heavy.

Below is a sample of the doorknob on every office door in a 9 floor medical building. They really need a retrofit.

The bane of my existence

These doorknobs are almost an epidemic. I'm sure you can find them all over the world and I'm not the only one who finds them difficult to turn.  They are the worst knobs ever.

This type of handle is much easier to use. Not perfect but better.

I was so happy to hear that in Vancouver the doorknob has been banned in new construction, and that Pickering and Halifax are also considering the ban in favour of lever style door openers. 

I thought of making a sticker to put on doors, stores, hotels and other areas with difficult access. Maybe a groundhog sticker would get our message across - but it's not really a good idea as it would alienate the people we want to influence. Maybe a website with pictures that demonstrate access problems would work better.

The hope that increased awareness of rheumatoid disease will help us and also make a difference to others with RD or similar problems keeps us working with determination for this cause.

It's great that we now have a day to promote awareness of RD. In addition to blogging about it I plan to write a letter to try to have Canada also choose February 2 as the significant day here, as it is in the United States. 

This post is part of RAWarrior's Blog Carnival.  The topic is What Would Rheumatoid Awareness Mean to You? You can get access to graphics you can use in your emails or blog and you could purchase T-Shirts or mugs that promote awareness.