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.

 

A Long Time Since the Royal Winter Fair

I got a beautiful pair of hand knitted mittens from my sister-in-law for Christmas this year. There they are below. There is an amazing story behind them.

When I was a young mom I had a loom and big plans to make artistic wall hangings and other projects just at the edge of my imagination. I decided to get fleece from a prize winning sheep shown at the annual Royal Winter Fair. The first step was getting the fleece. To do that I took the St Clair streetcar out to the stockyards/abattoir in the west end of town. The fleece I wanted to purchase was from the front end of the sheep - I thought it was obvious that would be cleaner than the back end. It turns out that's magical thinking. Sheep are not naturally clean and fluffy.

The old (young) me who bought the fleece

The wool from a quarter of a sheep was enough to fill up a garbage bag. After getting it home my husband and I found that even a prize winning showcase sheep has rolled in its bedding (and worse). It took a year but we finally found a good spot to wash it. People who live in apartments don't find it easy to manage washing fleece and laying it out to dry thoroughly in the fresh air. 

Much time then passed. Between having children and developing rheumatoid arthritis my life changed and after 30 years I finally shipped the fleece to my niece in Nelson BC and thought no more about it.

My niece is a talented knitter and also has an entrepreneurial streak Her great interest in fleece of all kinds both rare and common led her to open a store on etsy.com called TheFibreMine, where she now sells fleece, I loved the picture of the feral sheep she uses to illustrate the section that showcases fleece from wild sheep. 

She carded the fleece I sent, spun it and dyed it with lichen from her property, as I was to find out. It took months of steeping with the lichen in the warm sun for the colour to set. The picture below uses a different lichen but demonstrates the method she used.

When she was done she sent the yarn to her mom, my wonderful sister-in-law Jan who knitted them into the warmest mitts ever using a technique called thrumming that involves knitting fleece right into the mitts. I had never seen that before.

 

The inside of one mitten

So 40 years after this sheep perished I have new mitts made from the original fleece. I could not believe my eyes when I got these mitts for Christmas. It's a piece a family history and now our families are even more close-knit than before.

More Items To Make Life Easier

These things make it easier for me to do what I want to do. 

There's a great line of kitchen items I have found.  The first ones ever were these bowls, from the store at the Museum of Modern Art. (that's not the only place you can find them) The brand is Chef'n. I like them - this is not a paid ad.

You can pinch them a little and make a pouring spout and the material is non slip so easy to hold.

They also make a palm shaped brush and peeler. They don't slip out of your hand since they go over your finger. That's a big plus for me.

This curved little brush just fits in your palm.

Here's an example of what you can do with those magnetic handles from the first post about Items That Make Life Easier With RA. This is something I hadn't even thought of doing at first.

Original cabinet drawer

Now with magnetic handle

I no longer have to turn my hand to open the drawer and now the file cabinet matches the one beside it. A win-win.

I have a rolling case full of useful items. Of coursenot everything is equally useful. If they were in everyday use they would not be in the case. Sometimes I do demonstrations for The Arthritis Society in their local classes on Living With Rheumatoid Arthritis. People love to see ideas to make life easier.

However, I have not found a solution for the types of heavy-gauge zip-lock bags that are found in boxes of frozen meat products. After I throw them on the floor in frustration I slice them with an exacto knife or cut them with scissors and use one of  my own bags. (the easy-to-use type).

Easy Solution for Boots and Orthotics

When winter comes and we have to layer up and wear boots to get through the snow and ice I always particularly hated having to move my orthotics from my shoes into my boots because then you need to do the whole thing in reverse when you reach your destination. To make matters worse you also have to carry your shoes with you.

Contains shoes

But there is a solution that I'm so glad that my friendly orthotist mentioned to me.  It's a high tech solution that is a lot like the boots I had as a child.  (Not exactly the same because the childhood boots had zippers and my Mom was always using a lead pencil on them to try to make the zips work more smoothly.)

Here are the new boots!

Yes, they are light on glamour but my shoes fit into the boots easily and I can just pretend that I am an intrepid explorer. They have great treads and are very warm and waterproof.

Here I am putting them on. It's very easy to do and they close with velcro up the front and at the top.  My shoes stay clean and dry and I don't have to take my shoes and orthotics off and on over and over.

Here's a back view of the boots - they're even adjustable at the top. When you look at who recommends these boots online you find soldiers, sportsmen and hunters.

They are also the perfect boot for people who really need to wear their orthotics or insoles and want convenience. I have not had to take the orthotics out of my shoes all year. That really helps my hands.

If you want to do a search for them they are called NEOS Overshoes and well worth a look if you live in a snowy part of the world. Of course in Florida I don't think even wool socks sell well, much less overshoes.

Update. Here's the tread. Very Important and lessens slips and falls

Is Seeing the Doctor 400 Times Too Much?

This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.

The 400 visits in the title is what it is because for seven years I went to the doctor's office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.

After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said "Why aren't you doing the injecting yourself?"  A classic "Had I But Known" was my answer.  If I had had the faintest hint that I could have been doing it on my own I would have.

This author was one of the queens of the HIBK (Had I But Known) genre

That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.

Thinking of how many hours I wasted and how much money it cost the health care system was enough to turn me into an advocate for change. This number of unnecessary visits is a healthcare horror story. The lack of a short conversation not connected with direct symptoms, and a patient who didn't know enough to question the status quo produced this result. 

Now I aim to be an empowered patient capable of managing most of my care with a minimal amount of help.
After making a major long term effort to educate myself, to learn more about my health issues and to find out how the healthcare system and people in it work I can manage this with some help and support. 

Patient centered care

A source of support I found in addition to my doctor is patient communities. They have been a good source of reliable information. One group I've been in for ten years has many experienced patients whose stories are similar to mine. As an example when I asked them about effective treatments for mouth sores they had good ideas. I suggested one of these to my doctor and although it was new to her after looking it up she prescribed it - a great choice and it worked almost overnight.  It helped me to feel that I am now able to collaborate with my doctors. 

The old me would have meekly gone home and tried the mouthwash she initially suggested that was actually contra-indicated because of my Sjogren's Syndrome. That would have led to a repeat visit. 

Things are working well now but I fear starting over when my doctors retire (all of them are over 64) and I have to build new relationships. 

Authentic Beatles Pencil case (When I'm 64)

Items That Make Life Easier With RA

The best purchase I made before Christmas was a cover for my new phone. With no cover it didn't take long before I dropped it - it felt so heavy and slippery and hard to hold. 

Then I found this cover. You don't even have to ask people to smile when you pull out your phone for a photo.

Look at the hand friendly profile. The beak acts as a slip-stopper.




The next place I shopped was Lee Valley, an online and real life woodworking and hardware store. I love it when I find things that let me easily do what I want to do.

 These forceps (technical name is 'label removing pliers') were only $3.50. It's so hard to pull many of the interior covers and safety seals off of products. No one advises you to use your teeth on those obstacles.

With these locking forceps it's easy  to get a grip and peel them back. They'll also be good for vitamin bottles.





Twist ties and cables also drive me crazy. These are larger and easy to use as well as looking very cool and visible. Thin wire ties are so hard to open, even to find the starting point.

I also liked the idea of making my own magnetic handle.  I bought some magnets that are threaded and screwed them into a handle that was sitting around. This should make it easier to open metal drawers with awkward pulls.

All in all these were very rewarding purchases, including the grater with the big handle and good angle.

You can find an interesting project about devices and strategies that make life easier at Rheumful of Tips. It's been a lengthy project from Auntie Stress and covers a lot of territory.

Here's a post from me about resting splints and here's another about the best knife ever.

And another with more helpful ideas.

Your Life Vest Is Under Your Seat

Coming home from vacation this notice was in front of me for five long hours on the plane.

Every time I noticed it I was reminded of an article I read recently called "Sitting Is the New Smoking".  

 

That article along with the instruction in the plane "Your life vest is under your seat" should be a wake up call for all of us with sit-down jobs and/or online obsessions.  

Getting up and getting moving is the new life vest!! It's under your seat. You just have to get up and use it.

 

I talked to my sister about linking these two thoughts. She said "It's a stretch," which is also exactly what we need.

You have to get up and walk around to save your life.

This is even more important for those with chronic illness and more so with a musculoskeletal (MSK) disease. There should be a special pamphlet given to MSK patients with a warning, similar to warnings on cigarettes.

 

amckinnon   Suggested for knowledge transfer brochure

When I was diagnosed with RA years ago fatigue and pain were always with me. It seemed totally logical not to stress my joints or to do more than I felt was possible. After fifteen years of very little exercise it should have come as no surprise that my bone density was decreasing rapidly.  

BUT it was in fact a huge surprise. I know the doctor can't tell you everything at diagnosis but I would have expected some health care professional to tell me the facts: Since RA affects the bones there were steps I needed to take to prevent osteoporosis. Some of these steps could include taking calcium, doing some type of exercise to help my bones and taking vitamin D. 

My first reaction, after shock at another diagnosis, was anger. Why did I not know this? Maybe I was reading too many mysteries and not enough medical information but "what the doctor knows" was not readily available before widespread use of the internet. What I knew about my particular area of chronic illness I found in magazines and the newspaper.

It just never hurts to state the obvious. This is why a more co-ordinated approach to treating inflammatory arthritis, like Dr. Irwin Lim's clinic in Australia, is such a good idea. As you see from the link he has a vision! 

Here's another post from Dr Lim about osteoporosis in case you want to know a little more.

 

knitted by Cathy Beattie

With a shortage of rheumatologists internationally, and so many of us with prioritized problems and lists of issues longer than our appointments, we need to coordinate with those wonderful people known as allied health care professionals. That would include physiotherapists, occupational therapists, dieticians, orthotists, exercise physiologists and others.

When you read medical advice that suggests a team of healthcare professionals can be a big plus with chronic problems, one of the groups they were thinking of was people with musculoskeletal problems.

Living With Joint Damage

There was a paper published in December about the juggling act that it takes for patients to manage rheumatoid arthritis when they are doing well or having a flare.  I can attest to the amount of work that it takes just to maintain your equilibrium, let alone make progress.

And it takes very little to make some of the balls fall out of the air - a cold, going for a holiday, a storm, non-delivery of your medications. Here our power was out because of the ice storm and I still have not bounced back from 2 days of freezing in the dark.

Maintaining a program that works is so important that I can even agree with Dr. Sanjay Gupta about establishing a routine and sticking to it with RA, even though (if you watch the video) after a shower, washing my hair, walking to work and exercising for 30 minutes I'd be done for the day since my whole stare of energy would be depleted.

Video from amazon.com

For me any change of regular practice is something I have to pay for eventually. As an example, before I went on vacation I had a systemic cortisone injection. That meant I had more energy and was more active during our holidays. We had a great time meeting Twitter friends, visiting family and seeing the sights but right after the flight home I developed sciatica symptoms. That made me start limping and the gait change aggravated the joints of my foot.  The result remains unpleasant.

I'll certainly think twice about cortisone in the future. It's a high price to pay for a nice vacation. 

To end the year I posted my five most popular posts ever. It's ironic that the post about Progression of Damage and Why It Matters shows up as the third most popular post. The fears of progression are an important reason for aggressive treatment and I found out just before Christmas that the joints of my jaw have severe damage. I have been complaining of jaw pain for years but my doctor and dentists disregarded those complaints until now, when they have reached the point where the CT scan made them marvel at my ability to function with so much damage.

So that's a good reason to trust your own knowledge of your body. Even though I feel that I am an experienced patient and that I am effective, their dismissal of the possible problem influenced me. I found a Patient Advocacy Group for TMJ.  Now I know that if you have TMJ (Temporomandibular) problems it is unwise to have extensive dental work such as crowns that may aggravate your TMJ.

This leaves me wondering what else may occur in the future. It's as if my body is a facade. The hated phrase "But you don't look sick" might start to be even more meaningful.

Of course it could be worse. My friend Patty is still hurting from seeing that the doctor had written on her chart "looks chronically ill" and that he has stopped asking how she is doing. It reminds me of the song by The Who. "Substitute" What you see is not all of it.

There are many active RA patients who go back to regular activities. Doing that is a great demonstration of effective new treatments and good outcomes. However if you hold off starting treatment or you have a misdiagnosis. the joint damage that occurs may make it very hard for you to run future marathons.

Lessons From The Princesses

When I was young we didn't see many princesses except in Fairy Tales - Grimm, Hans Christian Anderson or Andrew Lang. They were endlessly fascinating and all of them were so different. There was never a problem not resolved for the better in the stories though the solution was often difficult. They were perfect works of fiction that had great plots and good endings.

The most inspiring picture from a fairy tale I saw recently was the Messy Princess. She looks so regal and yet - something is wrong here. I'll be looking for this story. Is she enchanted?  Why are her maids and ladies-in-waiting doing nothing?

 

by Edmund Dulac

(By the way, in my search for the 'real' messy princess story I found a free online story called The Messy Princess which would be perfect if you had a small messy princess at your house)

 

Reading all of these scary, sometimes horrifying stories was not the best way to prepare for real life where situations don't usually have fairy tale endings.

 

But here are some lessons you can learn from the princesses of the past. Remember the Princess and the Pea? 

by Edmund Dulac

The Prince was looking for a 'real princess' and this is the test his mother devised. She put a pea in a bed under 20 mattresses and 20 feather beds and after a night sleeping in this bed the princess, as she claimed to be, said that she was black and blue and had not slept a wink. The conclusion was "Nobody but a real princess could have such a delicate skin" and she married the prince and lived happily ever after.  

Personally I think she had fibromyalgia. Maybe there's hope for those with fibro after all. It's really a test to see if they are real princesses.  The lesson is that comfort can help you to feel better. Get the peas out from under your cushions and mattresses.

Then Cinderella came to mind. She has a lesson that is a little more practical. (I doubt you are plagued by peas.)

With good fortune and luck Cinderella found a most excellent mentor (her fairy godmother) and followed her advice almost perfectly. Having a mentor is invaluable in chronic illness. Useful advice as early as possible helps you have more success in aspects of your life dealing with illness.

Rumplestiltskin provides a good lesson in learning the right language to use defeat adversity. If you think of the evil little man as the personification of your illness, then knowing his name is the way to win, as the Queen learns when he tries to claim her baby. 

Christina Rossetti

What I mean by that is that if you learn the terminology and medical language of your chronic illness you will find that things move faster for you. You can cover a lot more ground in an appointment if the doctor does not have to spend time explaining what you can readily find out for yourself through research, reading online doctor sites and joining patient communities. This is effective for family caregivers also.

If you know of more lessons from the princesses please let me know. If there's one thing I enjoy it's fairy tales, but linking them to chronic illness takes a lot of thought.

Possibly Rapunzel could be seen as a story of reaching out for help but there are many versions of her story and her intentions are not clear. She obviously is unable to break out of her "jail" on her own. Asking for help often makes it easier for friends who wish they could do something but don't want to intrude.

by Heinrich Lefler

I enjoy reading advice that people with problems provide. Every blog can be seen as a potential guide. Usually the right answer is almost obvious. I think Ann Landers said this: Think about the possibilities open to you. Usually the one that is hardest is the right one. That advice has held true for me in many situations.

 

Good luck with the princesses.