RArainbow

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


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“Instructions for a bad day” and “To this day” by Shane Koyczan

Hi everyone! How are you guys doing? Hope you are all enjoying your summers/holidays wherever you are! 🙂 I apologize for my lack of blog posts lately. Work has been keeping me very busy and I sadly don’t have a lot of energy leftover to be online as much as I’d like. I tend to update my Facebook page https://www.facebook.com/rarainbowsite more often, so feel free to ‘Like’ me on there if you wish. 😉

Today I want to share a couple spoken word poems by the very talented Shane Koyczan. I first heard Shane’s poem Instructions for a bad day after the wonderful Elizabeth of The Girl With Arthritis posted it on her page…co-incidentally when I was flaring and having a bad arthritis day. As someone who loves reading and writing, I absolutely loved Shane’s poem. If I had my way, I’d make every person on earth listen to it ;). As someone whose been living with autoimmune arthritis for most of her life, this poem was especially meaningful to me. And that’s why I want to share it with you guys too. When you live with illness, there are bound to be bad days (and nights 😦 ). In the past I wrote this message specifically for persons who are new to their diagnosis of illness. I’d like to share this beautiful poem, which holds so much truth and can be very applicable to our situations. I’ve included some of my favourite lines of the poem at the end of this post.

I’ve also included another beautiful spoken word piece by Shane Koyczan titled To This Day. This one focuses on bullying and rising above it and is absolutely worth hearing. I actually feel that this should be played in schools, if it’s not being played already.

“There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go. Be confident. Know that now is only a moment, and that if today is as bad as it gets, understand that by tomorrow, today will have ended. Be gracious. Accept each extended hand offered, to pull you back from the somewhere you cannot escape….. Despite your instinct to say “it’s alright, I’m okay” – be honest. Say how you feel without fear or guilt, without remorse or complexity… If you think for one second no one knows what you’ve been going through; be accepting of the fact that you are wrong, that the long drawn and heavy breaths of despair have at times been felt by everyone – that pain is part of the human condition and that alone makes you a legion….So be a mirror reflecting yourself back, and remembering the times when you thought all of this was too hard and you’d never make it through. Remember the times you could have pressed quit – but you hit continue….Be the weed growing through the cracks in the cement, beautiful – because it doesn’t know it’s not supposed to grow there….If you are having a good day, be considerate. A simple smile could be the first-aid kit that someone has been looking for. If you believe with absolute honesty that you are doing everything you can – do more. There will be bad days, Times when the world weighs on you for so long it leaves you looking for an easy way out. There will be moments when the drought of joy seems unending. Instances spent pretending that everything is alright when it clearly is not, check your blind spot. See that love is still there, be patient. Every nightmare has a beginning, but every bad day has an end. Ignore what others have called you. I am calling you friend…. Everyone knows pain. We are not meant to carry it forever. We were never meant to hold it so closely, so be certain in the belief that what pain belongs to now will belong soon to then. That when someone asks you how was your day, realize that for some of us – it’s the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now – let go.”
“Instructions For A Bad Day,” written by Shane Koyczan.

I hope you guys enjoy these poems as much as I do. Feel free to leave a comment about them. Thanks guys!
Enjoy your summer!
❤ Ms. Rainbow


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“The Fault In Our Stars” movie (spoiler alert!)

Hi everyone! I recently saw The Fault In Our Stars movie and wanted to share some thoughts on it. I am a huge fan of the book by John Green (which I wrote about here) and so I was really looking forward to this movie. And I loved it! Though they had to make some changes in the movie and omit some parts, overall the movie held on to the honesty of the book, which is really what makes the story so special.

We all know it’s a romance and we all know it’s about cancer – but the story is more realistic and deep than the typical romantic-comedy (or illness film, for that matter). Our protagonists Hazel and Gus explore so many different questions and concepts when it comes to being chronically ill, such as “oblivion” and making a mark on the world and who will remember us when we pass on. Also, although the characters all have cancer, the story does not focus on cancer itself. This is not one of those stories where the character triumphs against all odds and everyone lives happily ever after. Instead, it’s about teens who have cancer and how they spend their lives – definitely more realistic than what we’ve ever seen in the mainstream media. And though there may not be the typical “happily ever after” that we’re accustomed to seeing, there is definitely a lot of joy which they find in their lives, even with cancer.

Having had autoimmune arthritis for most of my life, I related a lot to Hazel and the other young characters faced with illness. From the very first lines of the movie, I knew exactly what Hazel meant when she says, “I believe we have a choice in this world about how to tell sad stories. On the one hand, you can sugarcoat it. When nothing is too messed up that can’t be fixed by a Peter Gabriel song. I like that version as much as the next girl does. It’s just not the truth.”

When it comes to illness, I’ve realized that it is very difficult for persons (especially healthy persons) to be exposed to the reality of a life of illness. The world loves winners and we love to hear stories about persons overcoming their illnesses and going into remission, about persons with prosthetic limbs becoming amazing athletes and about persons triumphing in tough situations. I won’t lie, I love those stories too (and you know I share them on this site all the time). They absolutely inspire me and give me energy and motivation to keep pushing ahead. But illness is definitely not a glamorous situation, and persons who excel have to work hard (and experience a lot of mental pain as well as physical pain) to get where they’re going. In short, it’s not easy.

One of the most thought-provoking lines of the film uttered by Augustus Waters is, “That’s the thing about pain. It demands to be felt.” I have to agree when it comes to emotional pain. We try to avoid pain and painful situations in our lives, but the reality is that sometimes the only way to get through a situation is to experience that pain and work though it, even if it means tears are going to be streaming down our face. Running from pain means it’s always there, just below the surface. Painting a smile on our faces and pretending that nothing is wrong doesn’t work out in the long run, does it? Sometimes, it’s only by facing that painful situation head on that we learn to really accept and deal with it – and this is what makes us stronger and smarter for the future.

I liked Hazel’s story because it showed the reality of living with chronic illness as a young person. Yes, there are a million doctor visits and needles and pain, but there are also beautiful moments of joy and “normal” life too. They still went out and had great times together, like every other person their age. Their love and bond was extremely beautiful – but not in a sappy, puke-inducing kind of way 😉 . Watching them and knowing what they were both experiencing health-wise, I felt glad that they had each other to lean on. When you are sick or going through tough times is really when you need love in your life (whether it is from significant others, family or friends).

I think that having arthritis made the movie more personal to me as I related to the pain of the characters and their thoughts, fears and frustrations. My heart went out to Gus as he broke down crying at the gas-station as he tried to buy a pack of cigarettes – and hold on to a shred of normalcy and independence in his life with the cancer. If you have a chronic illness, then you can probably relate.

All in all, this movie is definitely worth watching and quite funny at times. I am extremely happy that a mainstream movie has come along starring young people with illness. The movie is not overly sad or over-dramatic or sappy – it’s just right. I did cry throughout most of the movie, but I think it’s because I was able to relate to Hazel’s words a lot. For those of you who don’t live with illness, did you cry as much as I did? Haha, please let me know!

Whether you have an illness or not, please let me know in the comments what you thought of the film, or if you are planning to go see it. Thanks guys! 🙂

❤ Ms. Rainbow.

 


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Laughter, the best medicine

Growing up I spent a lot of time at my grandmother’s house, especially after I was diagnosed with JRA and had to spend a year away from school. My grandmother kept boxes of old Reader’s Digest magazines tucked away in her store room. I loved reading them, even though much of the content was too mature for my 7 years of life experience at that time. My favourite part was the “Laughter, the best medicine” section where readers would submit funny stories and jokes. I loved the way just a few simple sentences with a punch line could surprise me and make me laugh and smile. As an adult I still love comedy, from watching stand-up comedy, to movies to tv shows to just having my friends tell me about a funny incident they experienced that day. Who doesn’t love to laugh till they cry and are rolling around on the ground? 😀

smileLaughter has often been explored in relation to its potential to relieve pain. It has been suggested that laughing releases endorphins which can temporarily help ease pains. In this TIME magazine article by Maia Szalavitz, researchers found that “Viewing or participating in comedy led to higher pain tolerance…and there was a dose-related response to laughter: people who laughed more felt less pain later.”

So what does this mean for persons with Juvenile Rheumatoid Arthritis or Rheumatoid Arthritis who live with chronic pain? Should we try to spend our entire day laughing? That would be funny ;).

I found a very interesting article on laughter and RA by RAWarrior, which references this rheumatology study by the Department of Joint Disease and Rheumatism, Nippon Medical School, Tokyo, Japan. It was found that “mirthful laughter affects the levels of serum pro- and anti-inflammatory cytokines differentially, depending on the RA disease activity” (Matsuzaki et al 2006). I don’t want to get too technical here, but it is interesting how laughter had varying effects on cytokine levels depending on whether individuals had “easy-to-control” RA or “difficult-to-control” RA. I would really love to see more studies like this repeated so we can examine whether we get the same results each time.

Stepping away from the scientific aspect of laughter, I think we can all agree that laughing makes us feel happier as it lightens our moods. It definitely distracts me temporarily from my pains (as well as the every-day stress which life brings). Whether laughter actually reduces disease activity or not, I cannot say, but I do know that I prefer to be laughing and in pain, rather than crying and in pain. When those night-time flares hit, get those Youtube videos ready on your laptop so you can brighten your mood.

I’ll leave you with 2 videos which I hope make you smile :). One is an advertisement by Evian and the other is a clip of dancing penguins from Happy Feet set to Michael Jackson’s Billie Jean. Enjoy!

– Ms. Rainbow

Article cited:
T. Matsuzaki et al., “Mirthful laughter differentially affects serum pro- and anti-inflammatory cytokine levels depending on the level of disease activity in patients with rheumatoid arthritis.” Rheumatology 45 (2006):182-6.

[Image by pixabay.com]


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How to keep (J)RA from taking over your life

RA Warrior has invited persons to blog about the topic “What do you do to keep the disease from taking over different parts of your life?”

To someone who does not have Juvenile Rheumatoid Arthritis or Rheumatoid Arthritis, or to those who are newly diagnosed, the whole concept of living with chronic pain and illness might sound depressing. Indeed, there are times when we may feel sad that we have to stay inside on the couch, while everyone else is out living their lives. But time helps us work through our feelings and eventually we develop techniques to help us cope and push through the pain. And we learn to live life with pain, while actually having fun and enjoying ourselves. I have found that distraction is important when living with (J)RA. We have to find healthy and productive ways to distract ourselves from the pain.

I have a few ideas which I’d like to share which have helped me over the years:

1. Reading
As a child this was basically all I could do when I was stuck alone in that hospital bed, while doctors tried to figure out what was wrong with me. I lost myself in fairy-tales, travelling to other countries and fantasy worlds. I still love losing myself in a good book when I’m flaring and can’t do much physically.

2. Art/drawing/painting/crafts
I loved arts and crafts as a child, and as an adult I still doodle or paint from time to time. It can be very therapeutic to draw or paint. If you don’t know how to draw, remember that it’s never too late to enroll in art class 😉

3. Singing
It doesn’t matter what you sound like. Sing for yourself. Sing in the shower. Sing Backstreet Boys’ songs if that’s what you love. 😉 Enjoy yourself 🙂

4. Dancing
Like singing, it doesn’t matter how you look, once you’re having fun. Move whatever you can move and shake whatever you can shake, even if you’re stuck to the bed.

5. Swimming
Swimming is my favourite physical activity to do. Even though I’m often in pain when I reach the pool, I always feel refreshed, strong and energized afterwards.

6. Listening to music 
I’ve posted about this already, but music helps me a lot. If you’re in pain and lying in bed, keep some music nearby so you can distract yourself and you don’t feel alone. If you’re struggling to do your physical therapy, put on some upbeat music to keep you going.

7. Love
This might seem like a strange point, but giving love (not just in the romantic sense) and being loved are amazing feelings which can help us through our pains. Knowing we have the support of our parents, siblings, cousins, aunts, uncles, boyfriends, husbands, friends, teachers and co-workers helps to strengthen our wills to fight this condition. If you’re a parent of a child with JRA, love them as best as you can – this is the time they need you most. In addition, having someone to love, whether it’s a significant other, a child or a pet makes our lives more meaningful and shows us there’s more to life than RA.

8. Cuddling/hugs
When you’re lying in pain, just having someone hug you can be a great comfort. If you don’t have a significant other, then hug your doggy or cat. If you have little ones, hug them. Kids are often a great distraction from pain 🙂 If you’re a parent of a child with JRA, sometimes the most helpful thing you can do is hug them while they try to sort out the pain.

9. Going outside and enjoying life
(I’ve shared some thoughts on this topic already, click here to read). When I’m in pain, walking may be difficult, but I still try to go out and do what I can. I look at it like this: I could stay in bed or I could go outside and either way I’d still be in pain. I may as well be in pain while doing something I love right?

rockI try to do things which make me feel happy, such as travelling or hanging out with my friends or even just watching my favourite movies. Pain is often present, but when I’m happy and laughing and surrounded by people who love me, it’s bearable. Keep busy and don’t allow yourself to dwell on the pain. I know it’s hard, but we have to keep fighting for our happiness.

Feel free to share your ideas also, so we can all learn together. Also, check out RA Warrior’s article which includes links to many more posts on this topic.

Wishing you all the best and sending gentle hugs your way,

Ms. Rainbow

[Images by blueandpinkclouds.deviantart.com and  pixabay.com.]