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).

I've Never Met a Couch Potato with RA

Recently at a session of an Arthritis Society course called "Living With Rheumatoid Arthritis" I heard an amazing statement. The physiotherapist who led the session said that in 20 years of seeing RA patients she hadn't ever met a Couch Potato with RA and went on to say that many of us with rheumatoid disease are type A personalities.

Couch potato and an 'A' type RA hero

She was saying that the beliefs we grew up with, such as "if you feel sick don't give in to it" and "you can do anything you set your mind to" may need to be changed when you develop a chronic illness. Feelings that make you "soldier on" and "push yourself through the pain" may help you get ahead when you're healthy but once you are ill, you need to listen to your body and take good care of yourself so that your health does not get worse.

This extra care for yourself can make you feel guilty and lazy when your body calls for rest. This is when you call on your communications skills and ask for help and understanding. The course leader also suggested a strategy for coping with worry. You save it up all week and worry from 7:00 pm to 8:00 pm every Wednesday night.

It's not easy to worry for an hour straight.

Another strategy for dealing with what you've lost is to do an assessment of your skills with the idea of finding which are transferable to the new self that you will have to create. The self which you reinvent based on your new reality can be very different from the old, but the bedrock is the same.

Here's a link to a book "Positive Coping With Health Conditions" which you can read online as HTML or download as a 42MB PDF. It helps you to learn more about living better. It's a long journey with changes and losses along your road. Remember, stress management is a life skill that you can learn.

One of the adjustments you can make is to put yourself in the center of your life.  Another is giving yourself permission to be good to yourself. Guilt and worry make that hard, but remember our course leader. "I never met a couch potato with RA."

To read more from #RDBlogWeek...

*pictures copyright amckinnon

Give the bird a carrot

As many countries try to control healthcare costs we will see more support for self-management, especially in patients with chronic disease. After all, we're living for long term with a problem that won't go away. We get tired of trips to the doctor and I'm sure the doctors get tired of us too. It's also easy to see that the way we manage our own health makes a big difference.

                                  Self Management ...then

Notice that Dr Chase has the answer for inflammatory diseases in addition to everything else.

When I googled "self management" and "chronic disease" the first result I got led me to the Stanford website and the "Better Choices, Better Health" program that they developed between 1996 and 2001. Their course they developed is used in the US, UK, Canada, Australia, Netherlands. It is not surprising that they are #1.

                                 Self management...Now

You can take their course on line or in person if it is offered in your area. It takes a day per week for 4 to 6 weeks.  One thing that is stressed in the courses is goal setting. Their aim is to give you a tool kit of skills that you can use to improve your health. 

Some of the apps I found online lately are enough to convert even a dedicated non-user. One project gives older people a virtual friend named Carmen who encourages them with personal feedback as they report their results in becoming more active. Carmen is a star!

Then I found Birds: The Stay Healthy or the Bird Dies version. You need to eat vegetables and exercise to keep your little friend alive. Maybe using apps is a better idea than I thought.

This study makes a good case for physical activity with Rheumatoid Disease if fun games don't tempt you as much as facts. 

My Past post on: Do It Yourself Management of Chronic Disease 

Disease Support for Patients

I talked to another patient last week after attending a “Living With Arthritis” program. The topic was access to helpful services and courses for people with Rheumatoid Arthritis (RA) – services like physiotherapy, occupational therapy, counselling and self management courses.

The course leader said that these services are accessible - and obviously we had found our way there. I said “That’s not exactly true. You’re assuming that doctors and rheumatologists mention these services and programs and/or send people to them for help”

Doctors are the one point of contact that all of us with RA have in common whether we are long term patients or newly diagnosed.  In my reality the doctors are too busy and these referrals are often missed or felt to be unnecessary. People who use what are called allied health services are usually savvy patients who find things out for themselves by searching, through peer to peer mentoring, or through referrals by exceptional doctors.  The newly diagnosed patients in the discussion agreed completely - they did not get those referrals.

As my new friend said “Patients don’t know what they don’t know, and they don’t find it out from the doctor.” Even a simple instruction such as “Contact the Arthritis Society for helpful programs” is often not given.

It would be great if there were a summary of services that 'may' be of use to patients with inflammatory arthritis (depending on need) as well as a short list of online sites where they would be unlikely to get bad advice.  If that existed it would at least give the doctors one simple uncomplicated message to deliver about the care that goes on when we're not seeing them. Isn't that the other 8,765 hours in the year?

There are clinics in the world where services of many types of professionals are delivered under one roof. Dr Irwin Lim from Sydney, Australia has such a clinic called BJC Health and he blogs as well so that's another resource where we can find advice and perspective. 

                                                                 Also in Sydney

One of the main benefits I noticed after seeing other team members like physios, nutritionists and therapists was that it seemed a lot less necessary to see a doctor so frequently. Perhaps that had something to do with my improved confidence that my actions were having good results.

In my first years after being diagnosed with RA I had a lot of anxiety. It's a relief that it has lifted and it's due in part to the encouragement of non-medical providers.

Click #rheum chat for a recap of some of the conversation from Sunday about access to care.

                                      RA is not good for your feet

Strength and Power with RA

It's been 30 years since I was diagnosed with RA.  The onset was classic in its symptoms but my GP at the time thought all I needed was aspirin.  He said take 12 a day and come back in 3-4 months.  I thought the weight loss that was occurring was due to switching from Pepsi to Diet Coke, and the sore feet were from standing at work.

The result after diagnosis was a long battle with illness and no exercise.  How could anyone expect me to be active?  It was all I could do to keep going. 

I saw a physiotherapist from The Arthritis Society sometimes and she recommended one exercise that stuck with me.  That is the exercise where you act as though someone is trying to stick a knife in your bellybutton.  You draw it in your muscles and tense them while you hold them tight for as long as possible and if you can, try to pull the muscles up toward your chin. 

Well anyone can do that lying in bed so I did it for a few months regularly.  Sometime later I was enrolled in a clinical trial which required frequent visits and doctor exams.  One day I was examined by a new rheumatologist.  In feeling my abs she said I had good muscle tone!!

That was a turning point - it amazed me that so little work could have such an appreciable effect.  The trial did not work out - but I was enthusiastic about exercise all of a sudden and started to work on Pilates in a modified form called Arthro-Pilates which is taught by a Lori Weisbrod. She has inflammatory arthritis herself. Her site is http://www.arthro-pilates.com/  It felt a lot safer to be taking lessons from a person who knew my limitations and is an amazing example.

Lori Weisbrod

Now I have more muscle and strength and maybe I could go farther. After all if a 95 year old can be a yoga master and if someone who starts at age 56 can become a sculpted bodybuilder in her 70s I am sure I can develop more strength and power too - I'm not even a senior yet.