Saturday, September 26, 2015

My First memories of Juvenile Arthritis

#RAblog Week is a seven day event from September 21-27, 2015. The brainchild of Rick Phillips, the goal of this week is to raise awareness about rheumatoid arthritis and build community. Hop on over to the RADiabetes site to learn more about #RABlog Week and find links to other participants.For Day 6 of #RABlog Week, the prompt was to write about our first memories of RA.

One of my first memories of RA is also one of my first memories, period. My mother is pushing me in a stroller along a dirt road not far from the cottage my parents had rented for a week. The sun is shining, the air smells of pine and sand, and I can hear the crunch of the stroller wheels as they move over the path. I know I am too old to be in a stroller, but my left ankle is swollen and it hurts to walk. We think it’s a particularly nasty mosquito bite. I am four years old.

 Me at about 3 years old, 
shortly before symptoms of JA first appeared

I’m sitting in a crib-like bed, the sides composed of thin, high metal bars that prevent me from getting out of bed on my own. It was white once, but now the paint is peeling and I’m pretty sure I spent some time picking at it myself. It’s boring being in this bed and in this room. I remember it as all white, with florescent light in the ceiling. In the flashes of memory, I look over to the right and see the door, white in a white wall, and always closed. The door has a small window near the top. Strewn over the white blanket that covers my legs are toys that my mother has brought me. Once, my mormor (grandmother) and Aunt Paula came to visit. I remember Paula’s fabulous fur hat and that she ate my lunch so the nurses wouldn’t get mad because I hadn’t eaten it myself. The food was terrible. I was in the hospital in isolation with a diagnosis of rheumatic fever. I was four years old. After three weeks, my mother took me home over the doctor’s protests.

My parents and I are getting off the bus. We’ve been to visit my mormor and morfar, at one of the large family gatherings they host on a regular basis. It dark outside, late, and way past my bedtime. I’m tired and hurting, and the short walk home seems insurmountable. My father lifts me up and carries me home in the dark through the quiet suburban streets. We don’t know why I hurt all the time, but I feel safe in my dad’s arms.

I’m in a doctor’s office, my mother sitting behind me. The doctor wears a white coat and glasses and he holds my hands in his. This is all I remember from a pivotal, life-changing moment in my life. My mother has told me the rest. That he took one look at me and said “Lene, you have juvenile rheumatoid arthritis.” That’s what it was called back then, now my kind of arthritis is called juvenile idiopathic arthritis. I was nine years old. It had taken five years and numerous visits to different doctors to get a diagnosis. The other doctors had dismissed my parent’s concerns, told my mother not to worry when she asked if maybe I had juvenile arthritis, even suggested she see a psychiatrist. In the end, she was right.

That was just the start of many hospital stays, many doctors, treatments that didn’t work, and so much pain, all on the path to bilateral hip replacements and a power wheelchair when I was 16 years old. One day, I’m going to write it all down.

Friday, September 25, 2015

Full Body Kegels: Staying Active with Rheumatoid Arthritis

#RAblog Week is a seven day event from September 21-27, 2015. The brainchild of Rick Phillips, the goal of this week is to raise awareness about rheumatoid arthritis and build community. Hop on over to the RADiabetes site to learn more about #RABlog Week and find links to other participants.For Day 5 of #RABlog Week, we were asked to share how we stay active. 

“It’s important that you stay active.”

We’ve all heard it. I bet every single doctor you’ve ever seen for anything related to your RA has at some point mentioned how important it is that you move your body. And it is — the words “use it or lose it” applies with extra force to this disease. Another factor is that “motion is lotion,” to quote my friend Britt (a.k.a. Hurtblogger). Once you get moving, you’ll find that it gets easier, and may even reduce pain.

The problem is that doctors never tell you how to stay active with a body that hurts. They just tell you to do so and send you on your way.

Which is not helpful at all.

The next time a medical professional tells you that you need to stay active, ask them how. They probably don’t know, because doctors specialize in illnesses. What you need is someone who specializes in rehabilitation and teaching people how to move better. So ask your doctor for a referral to a physiotherapist — or physical therapist, as they are called south of the border. A PT will be able to help you find ways of staying active, without putting undue stress on your joints. They’ll be able to help you walk better, and find ways of managing pain.

RA has wrecked me to the point that I use a wheelchair and I have so much damage that any kind of exercise sends me into a flare. So I have developed a bit of a smartass response to the inevitable question of how I stay active. When someone asks me this, I reply “my life is a range of motion exercise.” Which invariably makes them laugh.

It’s also true. Merely navigating through my life, making tea, brushing my teeth, getting lunch, taking care of the cat, etc., all involve range of motion exercises, as well as other ways of staying active. Several years ago, the team of writers on HealthCentral’s RA site did a video showing how we found a way of moving our bodies with very different levels of RA. My part of the video is all about range of motion.

Moving around in your house, puttering with chores counts. During bad times with RA, remember that.

Another tip for those of us who can’t move much is to tense your muscles when you’re lying down or sitting, watching TV. It turns them on — not in the naughty the way, but in the on-off way. Tightening your core when you move your torso, will over time help build strength. I call this approach Full-Body Kegels.

There are many ways of staying active, no matter how severe your RA is.

Thursday, September 24, 2015

5 Things I’ve Learned from RA

#RAblog is a seven day event from September 21-27, 2015. The brainchild of Rick Phillips, the goal of this week is to raise awareness about rheumatoid arthritis and build community. Up on over to the RADiabetes site to learn more about #RABlogWeek and find links to other participants.For Day 4 of #RABlog Week, we were asked to share 5 things we’ve learned from RA. Here are mine.

Living with juvenile arthritis or, as I simply call it now (because it’s easier) RA, for 49 years has taught me endless lessons. Some of them good, some of them the kind that you’d rather live without. All of them have helped me grow.

Crying doesn’t change anything. When I was 11 years old, I was admitted to a rehab hospital on the Danish coast in the hope that it would do something for my JA. I hated every minute of it. It was an awful place and I cried for three weeks. It got me no comfort from the staff, and my deep unhappiness did not factor into the decision about how long I was staying (that time, it was three months). Eventually, I stopped crying. It didn’t mean I hated it any less, merely that that I adapted to my environment. Once I stopped crying, I got better treatment from the staff.

Sometimes, pain is worth it. A big part of managing RA is pacing yourself, working within your limits, and avoiding pushing yourself so far that you hurt for days (or weeks). It’s important to know when to do that and when to throw caution to the wind. Sometimes, being there for others, or having an adventure is worth the pain later.

Life happens anyway. When a curveball comes right at you, it’s normal to feel like the world should stop. It won’t, though. It will keep right on moving and if you hide too long, it’ll go past you. The best way to recover and to live well with whatever challenges you have is to find a way to keep putting your life first, and the challenges/RA second. Put your focus where the action is.

You can be happy even when you live with lots of limitations. I spent a great deal of my life being very sad. Which is not say I didn’t laugh or have fun. Underneath it all, it always felt as if my RA and my disability prevented me from finding happiness. Then I came close to dying in a big RA flare, a miracle medication gave me a second chance, and I discovered that what makes you happy is recognizing the joy in the small moments of your everyday. No matter how much pain you’re in, if you can find a way to have at least a one moment in every day when you truly lived, rather than merely existed, you will be happier.

I am thankful to RA. In so many ways, RA has been a gift to me. People look at me funny when I say that, but it’s true. RA has taught me resilience, the knowledge that I can cope with almost anything. My life and my self are the products of everything that has happened in the past 50-something years, both the good and the bad, and I like the end result. If I had to do it all over again, I’m pretty sure I would choose to have RA.