RArainbow

A resource blog for young women living with (Juvenile) Rheumatoid Arthritis


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“Share the pain” website by the Arthritis Society

Hello everyone! Today I came across a great website which I wanted to share with all of you. It’s called ThePain.ca and it was created by the Arthritis Society (of Canada). Their new campaign encourages persons living with arthritis to share their stories and to speak up about how their lives have been impacted by arthritis. I read through quite a few stories, particularly the Juvenile Arthritis stories (you can filter the stories according to condition). It always surprises me how much I can relate to persons who live so far away from me and who have grown up with completely different backgrounds. I was so touched by many of these stories and I admire everyone who has contributed and “shared their pain” on the site. I guess in our own corners of the world, pain can strangely unite persons, as we all fight the same challenges every day.

There is a lot of honesty on this site, as the stories are written by real persons going through the same trials which you and I face on a daily basis. If you are newly-diagnosed, I think you’ll find this tool especially helpful. It’s always great to know that we are not alone. 😉

Sending you all gentle hugs,
Ms. Rainbow

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Riding the choppy waves of Juvenile Arthritis

Hi everyone! Today’s post has been inspired by this month’s Patient For A Month theme “What do you do when you can’t keep up?” which is being hosted by Leslie at Getting Closer To Myself.

When we live with a chronic disease, there are going to be rough days – days which are literally going to bring us to our knees. Whether you are newly diagnosed with autoimmune arthritis, or you are years into this journey, you probably know these days I’m talking about, right? Since these rough days are going to be a recurrent part of our lives, how do we deal with them? How do we keep it together and not allow ourselves to crumble under the stress of being the head manager of our unpredictable arthritis-infused lives?

I love the ocean, so let’s use that as an analogy for living with (J)RA. There are days when the waves are gentle and we are able to manage fine. Heck, we can even manage well. Despite the pains, we excel in school or our careers. We take care of and love our families. We climb mountains, we travel with our wheelchairs, we dance the nights away even when our joints creak with every movement. We think to ourselves, “Ha! Take that RA! I am your Master and you will never take me down. Never ever!” We have everything under control and we’re able to go out and have fun. We don’t even think about RA because we are so busy enjoying life and every beautiful thing it has to offer.

Then there are days when the waters get choppy and really, really rough. As many of you know, RA likes to flare unexpectedly. You can be fine one day and then find your entire body encapsulated by pain on the next. Also, when you have (J)RA and a wonky immune system, sickness tends to affect you worse than it would a healthy person. If I get the flu or a cold or a stomach bug, my JRA likes to flare up also. Sometimes the side effects of the medications can make us sick too. How many of us have spent days (and nights) throwing up due to the side effects of RA medications, or the after-effects of surgical procedures? Not fun, right?

But you know what? With time and experience we learn to manage these waters too. We learn to ride these waves, to swim or to tread water – even if we have never done it before. We do whatever we can to keep afloat.

But then comes the reality of living life with a chronic disease: illness doesn’t operate in a vacuum. In addition to managing sickness, we still have to live our lives. If you live with autoimmune arthritis, then you know that some days it takes every ounce of willpower and strength just to force yourself out of bed and get through that day. What happens when we’re already mentally and physically drained from fighting those (J)RA waves and life decides to send a tidal wave at us as well? What happens when “real life” intervenes and we have new challenges to face with school, exams, bills, relationships and work? How do we stay afloat then? How do we find a balance between managing this 24 hour/day illness with our regular life goals and daily tasks?

surferIn the past 22 years of growing up with JRA, I’ve found myself in countless situations where life and JRA overlapped and pushed me to extreme limits. And I know I’ll have many, many more situations to face in the future. In the past I’ve written about how my two knees decided to swell up and render me almost immobile just as I’d moved away on my own to start college. I remember hobbling and smiling a lot through tears, just so that classmates wouldn’t know anything was wrong (I don’t know why so many of us hide our pains, but I doubt we’re going to stop anytime soon :(). It took well over a month for those knees to return to normal, but in that month I learned to be a stronger person than I had ever been. I realized that I could manage completely independently even through a flare.

And I think that that’s what keeps me from going insane during those overwhelming flare periods, the fact that I’ve been through it already and made it through. Flares are painful, but once you realize the strength of your own body and your own capacity to achieve even with pain, your sphere of possibility suddenly becomes larger, even when you find yourself in new situations where you have no idea what’s going to happen.

The reality is that some days we may find ourselves bobbing up and down while trying to figure out the RA waves and life’s tidal waves. That’s fine. There is no guidebook and we are allowed to take as much time as we need to figure it all out. We may have superhero powers, but we are still human. Some days we may cry. Some days we may feel like we cannot endure anymore and we have no idea what’s going to happen. During those days I take a deep breath and remind myself of how far I have come with this illness.

In your most difficult moments, try to remember that your bad days are just that: bad days in a lifetime of days. A rough day does not dictate the course of the rest of your life. The flare will not last forever. Eventually those days pass and we realize that we actually were able to withstand that rough patch. We realize we are stronger than we knew. And that strength makes us feel a little more confident for the next time life sends a tidal wave in our direction. Cry if you need to get it out of your system, but don’t allow yourself to dwell on negative thoughts. Think about the support you have around you and the wonderful things you have going for you in your life.

If you find that you’re waiting and your situation isn’t improving, make a promise to yourself to make your life better. Do something – whether it means seeking better treatment,  making time to relax or going out and doing healthy activities which make you feel happy. I have outlined some coping strategies in my previous post How to keep (J)RA from taking over your life. Learning to cope isn’t an easy process, but time and experience does help us to find what works for each of us. Let’s train ourselves to ride those rough waves.

This is a great topic and I look forward to reading the other posts in this series. Feel free to share your comments as well.

Thanks, and hang in there friends!
Love,
Ms. Rainbow


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Waking up and Juvenile Arthritis

[Image credit: Charlotte Bradley - Someecards.com]
[Image credit: Charlotte Bradley – Someecards.com]

Hi everyone ;). When I first saw the Ecard above, it made me laugh. Sadly, I could relate to it all too well. Can you relate to it too? If you have autoimmune arthritis, you’ll probably be familiar with the experience of waking up only to realize that your joints are filled with stabbing pains and you can barely move :(. When I was younger, I would experience severe morning stiffness in all my joints. There were terrible days when my joints were simply locked and I was trapped and unable to get off the bed. Can you guys relate to this? Nowadays my condition has calmed significantly with treatment, but morning stiffness and pain are still part of life for me. I often wake up feeling groggy and unrested and it takes some time for my body to get going. Over the years I have developed some techniques to help me out in the morning which I want to share today. If you are battling painful mornings, hang in there friends. Please feel free to share your own techniques and coping mechanisms with me as well, so we can all learn together.

1. Set your alarm early
If you wake up with severe pain in the morning, give yourself some time to relax. When I open my eyes in the morning, it’s difficult/painful to just jump off the bed as my body is often shrouded in pain. Personally, it takes me a half hour to an hour to physically get off the bed.  I know that this is common for many autoimmune arthritis patients :(. But don’t fret, we can get through it. Because it takes time for my joints to “thaw” and loosen up, I always set my alarm a little bit earlier than necessary. This way my body has enough time to relax and my joints get some time to loosen up. e.g. If you know you need to get off the bed by 7am, set your alarm for 6.30am so you can lay in your bed and allow your body to loosen up before attempting to move.

2. Splints, braces and supports
In my last post I mentioned the value of splinting and supporting joints to reduce the discomfort of stiffness in the morning. My joints (like many RA patients) have a tendency to stiffen during periods of inactivity. Sometimes just speaking on the phone for a half hour causes my wrists, fingers and elbows to “freeze” in that position. Have you ever tried to “unlock” or unstretch a “frozen” joint? Talk about OUCH! 😦 Splints and braces have proven extremely helpful in reducing my stiffness in the morning, as they keep my joints secured in a comfortable position.

3. Heat
Heat is often used by arthritis patients to relax stiff joints. This article from ArthritisToday.org gives some pointers on using heat to combat stiffness. I have found that heat helps loosen my joints tremendously. I sometimes use heat packs at night and find that they are actually still warm by morning, which is useful to my joints. However, if you need more heat, have someone from your family bring you a heated pack as soon as you wake up. If you live in a cold area, consider an electric blanket to help warm you up.

4. Hot bath/shower
If you have work or school, it’s a bit difficult to find time in the morning for a hot bath. I have found that a hot shower works just as well in helping to loosen my stiff joints.

5. Do light stretching/exercise/yoga when you wake up
I know that you guys are going to groan for this one (do exercise while stiff and in pain?! Yeah right!), but I’ve found that doing a little stretching while in bed or during the morning period helps my joints to loosen up. Take your time and work on the areas which are problematic. Consult with your physiotherapist for exercises which are appropriate to your specific situation before attempting. You may find these Hand-stretching Exercises from WebMD.com and Bed Exercises from ArthritisSelfManagement.com useful.

I have also found that doing regular exercise/swimming helps with my stiffness overall, so don’t forget to get as much movement as you can, whenever you can, however you can. Trust me, I know that is easier said than done ;). Check out Sneaky ways to exercise with Juvenile Arthritis for some ideas.

6. Brighten that painful mood with music, a television show or a good book
As I mentioned in my last post, living with chronic pain can make us feel quite sad and frustrated at times. While the average healthy person wakes up feeling refreshed, autoimmune arthritis patients often wake up feeling tired and in pain, no matter how much sleep we’ve gotten. As such, we have to find ways to keep ourselves motivated and HAPPY, even in the midst of a tough and painful situation. While relaxing in bed, put on a few of your favourite tunes to help brighten your mood and energize you for the day. If you prefer, stream a short video, play a game or catch up on a little reading before you get off the bed. Take this time to laugh and be entertained and allow that positive mood to carry you into the day, even with pesky arthritis pain. 😉

Okay guys. I know that mornings can be extremely tough. Many of us wake up feeling like we’ve been beaten or physically crushed during the night :(. If you’re newly diagnosed, I know that it’s a very scary and frustrating experience. Hang in there. Feel free to share your experiences with morning stiffness or ways which have helped you through the morning pain. Thanks!

All the best,
Ms. Rainbow

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