Same Song, Second Verse - An Active vs Reactive Patient

At first when I was diagnosed with rheumatoid arthritis I knew nothing about it beyond what I heard from my (busy) doctor and what I read in a Chatelaine magazine article one year.

Learning how to find reliable information about my own health was complicated by having to google many of the terms I found. At first I thought that I might have a lot of the complications I read about - that was the way I learned what the doctors call "watchful waiting". After a few months with no changes it became obvious what I did not have to worry about. 

This access to the internet has meant we can all find information of any kind, from basic up to scholar or specialist level. This easy availability of information has leveled the field and is changing our traditional ideas of authority.  

Doctors are no longer the only source of facts and ideas about health. Now more patients than ever are comfortable asking informed questions at their appointments, where previously they might have been outside the exam room door before they had a chance to ask their doctor important questions.

The revolving door of healthcare

The individual empowerment that results from knowledge has changed my life in a good way. At the onset, when I was diagnosed I did not do much to help myself for and this lasted about 15 years. I was depressed and anxious and found it hard to deal with the life changes I was forced to accept.

It was encouragement from a physiotherapist and a doctor that started me off on a more active track and now I blog and am active on Twitter. All of those years of experience living with RA had left me with valuable information about how to deal with issues like finding a good team, the benefits of social support, orthotics, physiotherapy…it’s a long list. I wanted to share what I knew so I started to blog about chronic disease. But you can’t just blog – you need readers so I started to tweet links to research studies about Rheumatoid Arthritis (RA) that I thought were important.

As I met more people online I started to see opportunities to attend conferences and webinars and I realized that my opinions – that the opinions of patients - have a lot of value in healthcare. Knowing this made me feel empowered and engaged. Attending Medicine X was a huge boost because I found I was not an oddball, just a certain type of a health nerd. 

Now I am on the boards of some patient groups and a member of a variety of committees, from the Community Advisory Committee of my local hospital, to government bodies and also research teams. Even though I loved my previous job, this is even more rewarding.

Being involved with working for changes in the health care system has turned into a real and meaningful passion.  It is great to have the tools to make a difference and to encourage others to get involved.

I loved this acronym I found about learning. SML stands for “self-managed learning”– you can choose your preferred way to learn from a variety of resources like video, webinars, articles and scientific papers. We can all choose to learn at our own speed and level, and patients who learn more often do better in the long term in many ways. 

One that is important is social support. Patient experts and patient groups are good sources of knowledge.

Patient Support Group

This blog is part of RA Week. To see more blogs on this topic click here

Seems Like An Old Story Now

By now I have had arthritis for more than half of my life, so it's hard to even remember feeling normal and healthy.

I have rheumatoid arthritis (RA). It’s an autoimmune disease that does not affect any of my relatives, including my 50 first cousins.

50

When my kids were pre-teens I started to have pain and swelling in my wrists, fingers and feet. I was suddenly so tired after work that I would just lie down and feel unable to get up again, even for dinner. 

I was losing weight too but I thought that was because I switched from Pepsi to Diet Coke. 

My GP doctor seemed to think the symptoms were all in my head. When I said I was extremely tired he said "You're a busy active Mom."  When I told him about my foot pain he said it was because I was on my feet a lot. And when I had an oval cyst on the back of my hand he said they used to call them Bible Thumpers, because if you whacked them with the Family Bible they would go away.

My doctor made me feel that I was exaggerating and incompetent and I felt powerless to change the situation. When I left his office I would feel I should try harder but that brief dismissal did not help me at all. I knew there was a problem - sometimes I actually could not stand up first thing in the morning and had to crawl into the bathroom. 

The last time I saw him he told me to take 12 aspirin a day and come back in 3 months. That did not work at all and I still have ringing in my ears caused by all those aspirin.

Walking Gallery Jacket by Regina Holliday reflects this era

The only way I could think of to deal with the problem was to change doctors. Sadly the 2nd Dr. was no help either. The 3^rd was actually a foot surgeon who got the right answer less than 5 minutes after I saw him in his clinic.

During that 2 years it took to be diagnosed I developed permanent joint damage in my hands and feet (also jaw and neck as I found out many years later). One seemingly trivial result was that to this day I wear ugly shoes because it’s better than limping. I have had 10 surgeries to maintain my functional abilities but have a weak grip, can’t garden or vacuum and hate to stand a lot even at parties.

I have taken immune suppressant drugs and NSAIDS for the past 30 years and managed to work up until I retired, though I did need to change my job for one that had less physical stress.

That happened in the 80’s so even when I had a name for my health problem all I knew was what I learned from my doctor. This was before home computers were common and with a job and 2 kids I did not have the time or energy to do all I needed to do, let alone go to the library to learn more.

Things are different now. Last week googled my original symptoms “pain in hands and feet, fatigue, swollen joints" and found a million results in total with 7 out of the top 10 links mentioning RA.

Imagine if I had access to that in the 1980s – I might have known very quickly what was wrong and insisted on seeing a specialist. With knowledge we have power, and it is great to see more and more patients becoming very knowledgeable about their own health.

... to be continued in the next post... Active vs Reactive Patients

This post is part of RA Blog Week at the end of Arthritis Awareness Month. To see more blogs on this topic click here

To the Newly Diagnosed Day 3

It's been thirty years since I finally found out what was wrong with my health, and the news that I had rheumatoid arthritis (RA) was devastating to me. Despite that, what I would most want to tell people with a new diagnosis of a chronic disease is "It gets better." 

Not to say that your diagnosis will go away, but it is possible to develop strategies to live with it and to feel happy and successful. Your life won't be what you expected of course, but that's not uncommon no matter how healthy you may be.

Just this week I saw the chart below posted by Cheryl Koehn on Twitter, with the comment "Knowing about this would have helped me at RA diagnosis."

She called it a great summary of the stages of grief in death, arthritis or other illnesses. I agree with that, though I did not believe in the up-side of the chart for many years.

When Cheryl developed RA she was a former Olympic Volleyball player. I imagine her plans for the life she expected were totally derailed, but she continues to be an achiever in many advocacy and awareness areas, with a book called Rheumatoid Arthritis: Plan To Win and also as the President and Founder of Arthritis Consumer Experts which publishes the Joint Health newsletter every month. 

Coincidentally I also saw Lene Andersen's film, "Live Bold, Live Now" this week at Cure Arthritis. She considered herself a "worst-case scenario" because of the consequences of her Juvenile Arthritis and RA. Now she is passionate about sharing her story to show that it is possible to live a happy life despite arthritis. She is now a photographer an author working on her second book at the same time as being the lead writer on the Health Central RA site.  

Both Lene and Cheryl are great examples of the Loss Adjustment side of Cheryl's diagram, the up side that I couldn't imagine when I felt so much isolation and loss of power due to my "chronic life." 

For me it was a great online support group, solid encouragement from people on my care team, and social media that made a big difference in my life and extended my horizons. 

Here's a big plus for people with a new diagnosis - the treatments for RA are much better now than they used to be. Below you can see my Walking Gallery jacket highlighting problems in getting a diagnosis, and the first treatment suggested to me. It's written under the aspirin bottle "Take 12 aspirin a day and come back in 3 months." (Hint: It didn't work)

Walking Gallery Jacket

My advice to you is to set new goals, do whatever you can to help yourself adjust to your new reality and try to have fun. It's been great reading all of the other blogs on #RABlogWeek.