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.

 

The Groundhog is a Symbol of RA Awareness

At last we have a day dedicated to raising awareness of Rheumatoid Disease! This accomplishment did not occur overnight. Congratulations to Kelly Young, @RAWarrior, on this huge achievement that obviously took a great deal of sustained effort.  Here's the press release from Year 1 -  2013!

We hope that this will help to raise awareness of RAD (Rheumatoid Arthritis Disease) in new areas. The more awareness we can spread the better it will be for all of us now, and for those to come in the future.

Unfortunately Rheumatoid Arthritis Disease can't be treated as though we were in the movie "Groundhog Day" where we can work on our skills and refine our treatments until we achieve success and then are rewarded with a healthy normal life once we get it right.  Bill Murray had time to perfect all of his skills by repetition.  Not like us.

When we pop out of our burrows with RAD (Rheumatoid Arthritis Disease), whether the doctor sees the shadow (RAD) and treats it, or doesn't see it and we wait longer, the reaction is vital to us.

Ideally fast treatment that is the "right" one for us affects our lives dramatically, much more than the length of our winter this year will.  These are our lives that we are talking about here.

Awareness is important at all levels, from parents, to friends, to doctors who may not readily recognize this tricky disease. Lack of knowledge may cause you to miss that narrow window where the right treatment could bring you into remission. 

For too many of us we just don't have time to get a chronic complex disease, or we believe doctors who insinuate that it is all in our minds, or just due to our circumstances.

                                                       thejanedough.com

After all, we know we can cope with life - we've been doing it all along.  It takes something like being unable to get out of bed in the morning due to painful feet, or being unable to unlock a bathroom stall, or falling asleep over dinner to convince us that there's a problem.  Some of us realize things aren't right when we notice we're sleeping longer than our cats

                                                           Toiche and his pillow
 or other pets (The dog wants in)

                                                Dolly on her monkey bed

So I would urge everyone to build on Kelly's success and to spread awareness of RAD through articles, blogs, passing on the press release, an even getting articles in church bulletins.  This infographic/poster called RA Symptom's: A Patients Perspective in particular lays out symptom details very effectively for anyone to understand.

In the meantime I am going to try to be like this little fellow and hope that arming myself with knowledge will help me cut though all of the obstacles and shadows that will face me in the future.