Third Annual Rheumatoid Awareness Day

February 2nd was Rheumatoid Awareness Day. You can find more about the history of this awareness campaign here at the Rheumatoid Patient Foundation.

Happy 3rd Birthday!

This symbol of the day - the groundhog and the tie-in to bringing rheumatoid disease out of the shadows seems particularly poignant.

From Rheumatoid Patient Foundation

Every day when I wake up in the morning it feels like Groundhog Day. I don't have the same bed and same clock the way Bill Murray did in the movie, but the same aches, pains, fatigue and deformities are there every morning when I wake up. Despite my carefully cultivated optimism and the best efforts of my doctors and myself at the best care, in my case rheumatoid Disease doesn't go away and doesn't give up. 

Compared to people who developed RD earlier in their lives, in particular the mothers of two friends, I am a glowing picture of  health. It's obviously true that treatments are better now. We used to see many people with permanent deformities or in wheelchairs in Rheumatologist's offices where now most of patients look quite healthy. The effects of RD are less visible, and rates of some types of joint surgery are decreasing.

In my volunteer work as a Patient Partner, which is a program in which trained patients teach medical students about musculoskeletal problems, the person I am most often partnered with is almost the same age as I am but with a later onset and more effective treatment. It is a diagnostic challenge to see her visible symptoms.

We need to increase awareness of Rheumatoid Disease and the effects on patients among the general population.

We also wish there were a campaign to educate family doctors to recognize RD faster. The opportunity to have it go into remission is only a short period of time after it begins. They call that the window of opportunity. If even twice as many people could achieve remission the costs of RD would be much less.

The other area that needs attention is research funding.

To use statistics from the US as an example there are 50 million people with autoimmune disease and 11 million with cancer in the population.  Autoimmune disease is the poor cousin in this equation.  Cancer is estimated to be receiving $7,762 million this year (2013) compared to $872 million for autoimmune disorders.   

Autoimmune disease is blue. Research money shows on the right

 This chart compares cancer incidence and funding with autoimmune diseases. You can see how unbalanced this is. If we had even half as much money for research in autoimmune disease as there is  for cancer we could see huge strides forward for new and more effective treatments. Maybe the new drugs would even be affordable.

So today is the day to let more people know about Rheumatoid Disease. "Not your grandmother's arthritis!"

Here's a link to last year's Rheumatoid Disease Awareness Day post.

A Day In the Life

The members of the support group I've been in for ten years were thinking about Rheumatoid Awareness Day which occurred this week. In talking about A Day in their Lives with chronic disease some memorable comments came up.

Rosie says "One that you can't avoid considering is the extra diseases we have to deal with. Sometimes I wonder whether it matters if the fatigue is caused by my RA, Sjogren's or Fibromyalgia. This morning my eyes felt like they were sticking to my eyelids. Eye drops help but not enough."

Julie says "I know the first thing on my list is stretching/exercising my feet (so I don't get that awful plantar fasciitis) and trying to stand up, move and get my house coat on.

Then, I get in my Chair/stair lift that takes me downstairs.  I could go on from there and maybe I will do that.  I also use a knife to open up those "easy-open" tabs on milk cartons, etc." 

Lily says "I have a pill bottle opener that looks like this one.

My friend Ali bought it for me years ago and I use it every day."

I have asked my pharmacy to make sure that they put my medication into containers that are easy to open.  If it's child-proof, that's the same as RD proof for some of us.

Patti talked about bottles of all kinds "Some bottles I have found incredibly hard to squeeze, so I avoid buying them; some plastics are just too hard to squeeze. Like honey,mayonnaise,mustard, shampoo. I would also wish for RA to be more widely known about and understood, rather than people thinking you just have the odd achy joint."

She also mentions the problem of being stranded in snow and unable to shovel your way to your mailbox, another expense you don't need on a limited income.  She had to have a special car ignition key turner made because she could no longer use the regular key after her fingers got bad. She carries a rubber pad in her purse in case she needs to turn a doorknob.

I think Patti's rubber pad is a rubber circle like this to help with grip. (Canadian version)

The new cars with push button ignitions are much easier to start. It's so simple to get in the car and drive.

Also on the plus side Lily really enjoys being able to take as long as she needs to get ready in the morning. "One thing RA/RD has given me is the gift of time." (at a cost of course)

I'd agree that RA has given me a lot too. My life is not what I expected it to be; that's so common with or without chronic disease. 

After I retired I wanted to be able to volunteer in health care especially connected to RD. My wish came true in spades and even though I miss my clients and staff members, I have found my virtual life very exciting. It's quite possible to make your virtual life and your real meet up.

Still I do agree with what @angryblacklady tweeted one day. "Twitter is for introverts" And It was interesting watching the #MedX hangout a few weeks ago. Most the panelists said they were not outgoing so here's hoping when I'm at MedX this year I'll fit in. Though  fitting in at MedX is different from fitting in at most conferences.

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.