Thursday, May 14, 2015

10 Questions to Ask Your Doctor when Diagnosed with Rheumatoid Arthritis



Being diagnosed with rheumatoid arthritis (RA) is an overwhelming thing. How are you supposed to remember asking the right questions at the right time? 

Over the past few months, I’ve been part of a team of Canadian arthritis bloggers who were, with the support of Janssen Inc., asked to collaborate on ways to support people who are newly diagnosed with RA. We were invited to share questions that, looking back, they wish they had asked their doctors at diagnosis. I didn’t remember much about my diagnosis, what with being nine years old at the time, but I thought about what I would ask now or what I’ve heard others wish they’d asked.

The idea is that these questions can be a resource in helping you have a productive conversation with your doctor. Hopefully, the questions can help you get the information you need to make an informed decision about your health.

1. What caused my rheumatoid arthritis


2. How might my rheumatoid arthritis progress, and what is my prognoses?

3. How advanced is my rheumatoid arthritis? If there is already damage to my joints, is there anything I can do to reverse it?

4. If I am diagnosed with one autoimmune disease, does it put me at higher risk to develop other diseases or conditions? What should I watch for?

5. Are there any lifestyle changes you recommend to help manage my rheumatoid arthritis (i.e. increasing/limiting/changing my physical activity, making changes to my diet, etc.)? Can I continue to stay active while on medication?

6. Do you have any suggestions on how I share the news with my family, friends and co-workers t help them understand?  Are there any conversation starters that you can recommend?

7. How bad does a flare need to get before making an appointment to see you again? What should I use when the pain flares?

8. What are my treatment options? Are biologic medications easy to use? How quickly will my treatment start to work?

9. What are the potential side effects of my medications and how will they be monitored?

10. Where I can find more information, resources and support? Are there any programs available to help me manage my rheumatoid arthritis?



Can you add something to the list?

Crossposted on Your Life with RA
  

Monday, May 11, 2015

Why I’m Walking*


*This being the theorectical walking in my wheelchair. 

I’d like you to meet my friend Brad (and his babies Bella and Myah).




He and I were the double act in the #LiveBold RA update released earlier this year. Go ahead. Watch it. I loved the first RA multimedia story, but this one is my favourite. It shows just how far you can get in one year, it shows Brad’s passion for woodworking, and how he raised awareness with spoons he carved himself. And it shows the two of us being really silly with excellent baseball caps.

Three months ago, Brad passed away from complications of rheumatoid arthritis.

Brad only had RA for seven years. The disease burned fast and furious in his body, accumulating complications such as RA lung, Addison’s Disease, a stroke, and eventually congestive heart failure. Biologics, such a miracle to many — including myself — caused life-threatening side effects. He lived through the daily torture of uncontrolled RA, a pain that some doctors have compared to the pain of bone cancer, while managing to make so many people laugh and feel special. When he died in February, he left a void in his family, in our community, and in my heart. I miss my friend every day.

I’d like to introduce you to my mother (don’t worry, she’s still with us).

 

Mor and I have been a double act for as long as I remember. We are very much alike and spending a lot of time together, first when I was an only child before my sister was born, and second because of my RA, helped us grow even closer. We have a psychic link, often calling each other just with the other person is picking up the phone to call. She knows me better than anyone else.

My mother has osteoarthritis. This is the one they refer to in commercials when they talk about “minor arthritis pain.” Mor can tell you that there is no such thing as minor arthritis pain. Take her hip. It’s been hurting for years, but she managed okay. Last year, that changed. From one week to the next, the last bit of cartilage wore through, and the pain escalated from a lot to excruciating. She had to wait five months for the hip replacement surgery, and in those months, her life slowly shrunk, just like mine did during my big flare.

Mor got a new hip in January and after a long and hard recovery, she’s better now, but still not close to where she was. Coming back from these things takes a very long time.

There are over 100 different types of arthritis. 4.6 million Canadian children and adults live with one type or another. More will come, as the baby boomer generation ages.

Those of us who live with autoimmune arthritis, such as RA, have more options for treatment now. Fifteen years ago, biologic drugs were introduced and they have made a revolutionary change in the treatment of these diseases. It is now possible to experience remission or low enough disease activity that you can participate in your life, work, community, and family.

I am one of those people. Ten years ago, I started Biologics and for the first time since I was four years old, a medication worked for me. It gave me back my life quite literally, stopping a flare that had brought me to the brink of suicide. Over the past ten years, I have built a life that is filled with joy and gratitude for this gift. I call it my miracle.

But these drugs are expensive, not everyone can take them due to side effects, and some people don’t respond to the handful currently available. More research is needed, more drugs are needed.

Those who live with osteoarthritis need options, too. There is no treatment. People who have OA essentially have to suck it up and take anti-inflammatories (maybe the odd injection of synthetic synovial fluid, which is temporary) until the affected joints are so bad that they warrant surgery.

We need options. For people who live with autoimmune arthritis, and for those who live with osteoarthritis. We all need a miracle. And for that, we need money.

On June 7, the Your Life with RA team is doing the 5K in the Toronto Walk to Fight Arthritis and we are asking for your support. Any size of donation, small or large, is welcome — they will all be part of a greater whole helping us to meet our goal. You can donate on my individual page or on our team page.

This year, I’m dedicating my walk to Brad and my mother. And I know they will both be walking with me in spirit.

   The 2014 Your Life with RA team