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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“Becoming ill” | The Girl With Arthritis

Hi everyone! I recently asked the amazing Elizabeth from The Girl With Arthritis about her story of transitioning into a child living with chronic illness and how she dealt with it, especially since she started having pains from a very early age. I wrote a bit about my own story in the past here but will eventually do another post with more details. I am always curious to learn how our arthritis stories differ and also compare, especially for young persons who have basically grown up with arthritis. Elizabeth wrote a very insightful piece which I want to share with you guys today. I was able to relate a lot to what she wrote and I’m sure many of you will also. What struck me is when she wrote “I knew at age ten that tendonitis wasn’t what was going on.” As a child I also remember knowing instinctively that what I was experiencing was not a flu or sprain like the doctor said it was. Thanks for sharing Elizabeth! 🙂

Read Elizabeth’s post here: http://arthritisgirl.blogspot.com/2014/06/becoming-ill.html

All the best!
❤ Ms. Rainbow


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For newly-diagnosed patients of autoimmune arthritis

[Note: I’ve written today’s post based on my own experiences with illness. I am not a doctor nor psychologist.) If you are having a hard time adjusting to living with chronic illness, it may be helpful to go to a doctor who may be able to offer you further support. I have also included some helpful resources at the end of this post.]

Hi everyone! Today I have decided to write a post specifically for persons who are still new to their diagnosis of autoimmune arthritis. The Internet wasn’t around when I was diagnosed (wow, I’m that old! 😉 ) so it was really a different situation than one might experience today. It was really only in my teens that I started to have wide access to information on my condition through the Internet. In a way, I am glad about this because I am not sure I would have wanted to read about the reality of Rheumatoid Arthritis at age 7! Having had JRA for over twenty years now, I sometimes meet adults who are older than I am, who have just been diagnosed with Rheumatoid Arthritis. Speaking with them reminds me how scary and traumatic getting an illness can be, as they often express their fears to me about their conditions. When I was diagnosed with arthritis, I remember it being a very intense period in my life, as I was mentally unable to understand why my body was going berserk and why I was not getting better. I was almost 11 years old when my doctor suggested that my arthritis was extremely aggressive and would likely follow me for the rest of my life. Accepting the possibility of arthritis into my life FOREVER was another confusing period and one which took some time to get used to – but I eventually did. Today, at 29, though my arthritis journey is still not smooth nor stable, I feel really comfortable with my arthritis and I now have the knowledge and mental capacity to handle it and whatever happens. To be honest with you, most days I forget that I have arthritis – it has become such an automatic and natural part of my life.

Regardless of what age you are diagnosed with a chronic illness, whether you are 3 or 7 or 11 or 16 or 21 or 28 or 35 or 45 or 65 or 85, I think that it is a huge life changing event which takes some time to get used to. Unless you have somehow been blessed with the wisdom and patience of Mother Teresa, Gandhi and the Dalai Lama combined, when we get diagnosed with a chronic illness like autoimmune arthritis, it is likely going to take some time for our minds and bodies to adjust to the situation. I mean, most of us (if not all of us) never expect to get diagnosed with a life-long painful illness, right? Pre-illness, I think many of us simply assume that “other people” get illness and it’s not a world which we need to worry about.

There has been much scientific work which notes that many patients who live with chronic illness go through the same emotional stages as someone who is facing death or the death of someone else. The KĂźbler-Ross model outlines the five stages of grief: denial, anger, bargaining, depression and acceptance (Wikipedia). It has been stated that persons living with chronic illness may experience any or all of these stages, in any order and that the amount of time a person spends on a particular stage will differ from person to person.

Why am I discussing this model today? So that you realize that everything you may be feeling right now, those feelings of shock, anger, confusion, numbness, sadness, tiredness and denial are all totally NORMAL. In life, we are often taught to suppress our “negative” feelings (and by negative feelings I’m referring to those emotions that aren’t associated with rainbows and sunshine and pink cotton candy 😉 ). We are told that crying is a sign of weakness and that we must be stronger than those emotions. We are often told that we must learn to control our anger and not allow life situations to get us worked up or to get the best of us. We are made to feel guilty, “unstable” and “weak” if we are not able to handle a situation calmly and with a smile on our faces. While I agree that we must not allow ourselves to get too lost in negativity, I think being diagnosed with a chronic illness is a life event where you’re allowed to express your displeasure!

Personally, I think it is healthy to express all these emotions if you have been diagnosed with a chronic illness. Getting diagnosed with a chronic illness is a huge life-changing event, which will likely affect every aspect of our lives. And the unique thing about chronic illness is that even though you may become used to it, there may still be new health problems which will come up, which will again take some getting used to. In my opinion, expressing all our emotions is the only way we grow, strengthen from the inside and learn how to cope with the situation. And all those emotions eventually help us reach the stage of accepting illness into our lives. The important thing is that we do not stay stuck at a particular stage forever. We must progress from our feelings of anger and sadness eventually, if we are to ever be productive in life.

On youth message boards for arthritis, I’ve seen a question asked over and over by newly-diagnosed patients: “I’m having trouble accepting my illness. I keep crying all the time. How do I proceed to accepting my illness?”

The truth is there is no quick and easy way to accept an illness and just reading a blog post on the Internet isn’t going to automatically help you accept illness. It is a process which takes time and it is dependent on our age, our personalities and our experiences in life. For me, fully accepting JRA into my life happened gradually over the years. As I got older and started to understand the world, life and myself, I was able to understand my situation better. I started to realize that spending too much time feeling sad over arthritis was time taken away from doing activities which brought me happiness, such as travelling, learning and spending time with my amazing friends. I also realized that I could still do a lot, even with arthritis.

As I accomplished more with my arthritis, I became more confident with myself as a young woman with arthritis. I also learned how to adapt and deal with various arthritis-related situations. Time and experience has definitely made it easier for me to cope with arthritis and all the unexpected situations which continue to pop up. There are times when I still get overwhelmed and frustrated (especially when something new happens which I can’t control), but having the experience of knowing I’ve made it through all these years gives me the confidence that I can get through whatever I am faced with (even when I think I can’t).

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Image source here. Photo by Nicole Lavelle.

It can take years to make sense of this situation and to fully get used to the fact that arthritis has become a life-long partner.

  • Give it time, and most importantly, try to adopt an attitude of trying, no matter what happens.
  • Be wary of spending too much time on the Internet reading about arthritis, while life goes on around you. Being informed and educated is great, but while you treat your condition, aim to strike a balance. You have to enjoy life too, not so?
  • Even though you’re in pain, still try to do activities that bring happiness into your life. Make sure you have something wonderful to look forward to every day, even if that means simply planning to sit down in your garden with a glass of your favourite ice cream for a half hour.
  • Surround yourself with caring people who love you and will uplift you.
  • Do not be afraid to try new experiences because you have an illness. Although there are instances where we will clearly need assistance or may experience physical limitations, try not to use your illness as an excuse not to try. How will we ever know whether we can do something unless we try, right?
  • Train yourself to think creatively. If you can no longer do certain things because of pain or joint damage, consider visiting an occupational therapist who may be able to suggest a tool or gadget to help your mobility.
  • Do not be afraid of having to use a wheelchair, a walker or crutches. If you limp while you walk, don’t let self-consciousness stop you from going out in public. I know that this is all easier said than done, but have confidence in yourself and be aware of how much you have to contribute in this world.
  • As scary as it all seems, make the conscious effort to keep pushing ahead. Your biggest friend in this whole situation is going to be yourself. Above all else, we have to try and we have to work hard to achieve what we truly want out of our lives. There may be loads of challenges along the way (and there will likely be negative persons as well), but we must train ourselves to remain focused on what we are doing.

There’s a song which does a good job of kicking you in your butt if you find yourself stuck and not progressing in life: Dare you to Move by Switchfoot.

ARE YOU CURRENTLY STRUGGLING WITH YOUR ARTHRITIS? There is no need to feel alone in this situation. Check out Arthritis Care’s Helpline here, where you can email or even phone in to speak to someone confidentially about whatever arthritis-related challenges you may need support with. They even have specific resources for youths here. Instead of dealing with this on your own, reach out to them.

Readers, do you have any advice for newly-diagnosed patients? Are you still struggling to accept your illness? Feel free to leave a comment below so that we can all learn and share together. Thanks!

All the best,
❤ Ms. Rainbow

 

Recommended reading:

 

 

 


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The Fault In Our Stars (Spoiler Alert!)

Hi everyone! I know I’ve been gone for some time. Life, as well as arthritis, has been keeping me incredibly busy, but I am plodding along! Today I wanted to discuss a book which has become very popular lately due to the fact that it will be appearing in movie format next month – The Fault In Our Stars, by John Green.

I will try to write this post without giving away too much of the plot ;). The book is basically about two teenagers who are living with cancer and their experiences together. The ending is actually a little predictable, but I still really enjoyed this story.

Why? Because the story is so honest and there are no sugar-coatings. The blunt, honest questions of the main characters Hazel and Augustus are questions I’m willing to bet almost every chronically-ill youth has asked himself/herself at some point. When the characters become frustrated or feel pain, we can feel their pain too – because their stories are our stories too. Because the story is told from teen Hazel’s point of view, the tone is very much that of a young person, and I found myself laughing and smiling at so many of her observations, because I’ve had those same thoughts myself many a time.

There comes a point with illness when we get very used to our situations. We get used to the pain, the needles, the hours in waiting rooms, the stares from strangers, the well-intentioned but sometimes hurtful words from persons who don’t understand illness and the “sick” lifestyle. And eventually, many of us start making jokes about it – because laughing about it is more fun than crying about it, right? Our main characters have reached this point of comfort where they are able to poke fun at their respective situations. However, that doesn’t mean that they are invincible and we get honest insights into their thoughts and struggles and pains when life becomes too overwhelming.

One of the repeated lines in the book is that “The world is not a wish-granting factory.” If you are living with illness, I’m sure that’s a concept you’ve realized all too well. There are so many great themes in this book, and depending on our own experiences, we will all take away something different from it.

If you are a chronically-ill person, I definitely recommend taking the time to read this book. But do get the tissues ready, tears will be shed! Consider yourself warned! 😉 If you’re read “The Fault In Our Stars,” let me know what you thought about it in the comments below. Thanks!

Lots and lots of gentle hugs ❤ ,
Ms. Rainbow


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The Lego Movie, Juvenile Arthritis and being the Master Builder of your own life

[SPOILER ALERT: I will be discussing certain aspects of The Lego Movie in this post. Read at your own risk and consider yourself warned! 😉 ]

Hi everyone! I recently saw The Lego Movie and was inspired to write a post about it today. I spent much of my childhood using Lego pieces to build animals, doll furniture for my Barbies and random works of art 😉 , so the Lego brand is certainly a wonderful memory from my childhood. Personally, I think Lego is one of the most amazing toys ever invented, as it encourages creativity at every age – and it is arthritis-friendly! But to be honest, I was wary of seeing this movie, since I felt it would be childish and geared toward a younger age group. Also I was not sure how I could sit through an entire movie animated with pieces who walk stiffly without bending their knees (Hey! Sounds eerily like arthritis, doesn’t it? 😉 ). However, I really enjoyed it and found certain parts very touching. There are many ways to interpret this film, but ultimately it’s a great movie for families to watch together and I highly recommend going to see it if you have ever played with Lego pieces. As someone who thrives on everything creative, I absolutely loved it.

There are some wonderful messages in this movie, one of them being that life is fluid and that the possibilities to create are infinite. In addition, what someone sees as silly and unconventional, may be in fact be useful – it’s all a matter of perception. As someone who has grown up with Juvenile Rheumatoid Arthritis (JRA), a condition which causes joint inflammation, damage and challenges to my movement, I was able to relate very much to these particular points. Growing up with arthritis, I am lucky that my medical team and family members encouraged me to always try. When I was diagnosed with JRA as a child, my joints were inflamed to the point where I was often unable to move or walk. But I still had to try. I tried to walk with walkers, but my hands could barely grip the handles. I would drag myself around the house on my butt to get around, because it was the easiest way to move. In public, I forced myself to walk upright and had a noticeable limp. Though people often stared, it always got me to where I needed to be.

The message I received growing up was that it didn’t matter whether my joints were swollen or if I limped or that I had to wear leg braces or had to take injections – I could still do my lessons and attempt sports and achieve my goals in whichever manner I wanted. I knew that the challenges I faced were not typical to my peers and that knowledge gave me a freedom of sorts. While my teenage counterparts were gushing over magazine covers and attempting diets to emulate their favourite models, I did not feel particularly pressured to follow them, because I knew I had other challenges to worry about and I had to put my energy into making myself healthy and strong to deal with arthritis. I knew that I was on a different playing field than my peers and that I did not have to do exactly what they did. As I grew older, without any sort of guide book or precedent to follow, I realized that I could make up my own rules for living with arthritis. I could try new activities, travel and do things that made me feel happy (legally, of course 😉 ) , even if it was not in keeping with what was “popular”.

As a 20-something year old, I’m happy to say I have been able to achieve many of my personal goals. With treatment, my arthritis is significantly calmer and I continue to work hard at my goals, with arthritis by my side.

So, back to The Lego Movie. In the movie, characters labeled as the “Master Builders” are those creative souls who never read the instructions and who utilize available Lego pieces to get out of sticky situations. They are skilled at using whatever limited resources they may have and turning unlikely scraps into useful, functional models. Likewise, people living with chronic illnesses remind me of Master Builders, because they still find ways to achieve no matter what challenge they may be facing (want to travel to Africa with a wheelchair? No problem. Want to climb a mountain with arthritis? You can do it.) In my readings, I have noticed that children, in particular, are often good at adapting to life with chronic illness – probably because they are innocent and unaware of the perceived limitations (or “instructions”) society has set for persons living with illness.

Another message conveyed by the movie is that we are all capable and hold value, no matter our backgrounds or skills or abilities. In the movie, a prophecy tells of the chosen one who will save the world – the “Special.” Emmet Brickowski is an ordinary instruction-following construction worker, who is eventually told that he is the Special. He is elated and at times believes it. He believes in himself and his abilities….until he is told that the prophecy was fake and there never was a Special. The message Emmet learns is that it’s not just certain people who can hold power or make a difference – every single person has the potential to make a difference. I know it’s a simple, sugary message that might have some of you rolling your eyes at this point, but it’s something I have learned is true.

At a recent doctor’s appointment, I observed a 4-year old boy playing with a 2-year old boy. Neither boy had the use of his legs and could only sit on the ground as they played with the surrounding toys. The 2-year old tried to lift his body onto a children’s car, but he was unable to do so because his legs were too weak. Watching him struggle, the 4-year old boy (who himself could not walk) tried to lift the 2-year old’s body onto the car. When he realized he was unable to do this, he called his mother to lift the 2-year old boy onto the car. I was really impressed with the 4-year old’s ability to realize the frustration of the 2-year old and find a way to help his new friend.

It’s a simple example which shows us that every person has the ability to touch or connect with another person, no matter our age or situation. We can choose to live our lives separately with illness (which is perfectly acceptable), or we can connect and potentially create something pretty amazing – just like Lego pieces haha. 😉 😛

Living with a chronic illness isn’t always easy and at times it is extremely frustrating, isn’t it? But ultimately, I’ve found that it often teaches us to think outside of the box and to find creative ways to achieve our goals. We learn to think like the Master Builders in The Lego Movie, and learn to see potential and possibility where many would think there is none.

Readers, have any of you seen The Lego Movie? What messages did you take away from it? Let me know in the comments below. Thanks! I hope you are all doing well!
❤
Ms. Rainbow


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Frustration and (Juvenile) Rheumatoid Arthritis/Facing our fears

When I started to show the symptoms of Juvenile Rheumatoid Arthritis as a child, my world changed. I went from being an active, jumping, climbing, running little monkey of a girl to one who couldn’t even walk. To get around my home I would sit on the ground and drag myself on my butt, using my heels to pull myself forward. In the shower, my mother would shampoo my hair because my hands were swollen and painful and I could no longer do an adequate job of it. I couldn’t dress myself and sometimes I couldn’t even feed myself. I struggled to fasten buttons on my shirt and to open taps and bottle caps. I constantly spilled drinks because my wrists simply could not grip the cups anymore. Just moving was a challenge because my joints had somehow painfully frozen. There were many months of bed rest and not walking as I took a year off from school to experiment with medications and physical therapy, while doctors tried to figure out how to best manage my condition.

hippoI remember vividly how frustrated I’d feel when I couldn’t do these basic tasks, like twisting the cap off a bottle. First I’d get angry at the drink for having been capped so tightly. Then I’d get angry at myself for not being able to do something as simple as open a drink. Rage and frustration would bubble inside me until I eventually exploded. I’d scream at the drink and eventually scream at myself. Then I’d collapse onto the floor in tears and feel like I was a failure, because I couldn’t do a simple task which every other person could do – a task which I was once able to do on my own. My body was failing me and I just could not understand it.

I felt ashamed of myself. I felt angry with myself. I felt sad for myself. I felt helpless. Those are quite a few intense emotions to be coming from a 7 year old, right?

Have any of you ever felt this way because you couldn’t do a physical task due to JRA?

I’m now 28 years old and a lot stronger and mentally equipped to handle my condition than I was at 7 years old. I guess that’s why I’ve started this site, so that one day when a young person with JRA googles her condition, she will be able to read some posts by someone who lived through what she’s currently living. And I hope that she won’t feel so frustrated or so alone – that she’ll realize she’ll be okay. You will be okay. 😉

It’s been 21 years since JRA entered my life. And you know what? I still get difficulty in twisting the cap off a bottle ;). But the way I feel when I can’t open the bottle has changed completely. When I can’t do a physical task, I don’t feel so frustrated anymore. I’m able to stay calm. I keep trying until I realize that I really physically can’t do it. If someone is nearby, I’ll ask for help. If no one is around to help me, I accept that I can’t open it and I move on. I don’t feel like a failure and I don’t feel helpless. I don’t even think about it anymore.

It’s a gradual process as we learn to accept our limitations with JRA. No one wants to be called weak, right? Especially not young Super Women who are thirsting to experience our beautiful world. I think time and experience really helps us here. As someone who strongly believes in going out and creating your dreams, I still hate having to use the word “can’t” in my vocabulary and I dislike having to ask for help. But I have had to humble myself and be honest about what my body can physically handle. Part of accepting JRA meant accepting my physical limitations. Part of this acceptance came from realizing my worth and talents in other areas and loving myself exactly the way I was. I soon realized that my inability to open a bottle cap did not impact on my ability to share my personality with the world, to do well in school, to make friends or to enjoy life. And I stopped feeling angry and ashamed and sad as I learned to love myself with JRA.

If you are newly-diagnosed with Juvenile Rheumatoid Arthritis or Rheumatoid Arthritis, please know that the world is still yours and you still have so much to offer. It is natural to feel frustrated and to mourn the loss of what we were once able to do, so don’t beat yourself up if you feel this way now. It’s indeed scary and frustrating when our bodies start changing, when our joints start swelling and we start losing our mobility. Loss of control of our body is an enormous fear for any person. Who wouldn’t feel frustrated?

Hang in there friends. Things are going to get better – believe that. These tough periods make our backbones grow and bring out the strengths we never knew we had. Where our bodies start failing us physically, our minds start to become stronger mentally. You are going to get through this rough time.

I look back at my 7-year old self and I feel sad for that little girl. But at the same time, I wouldn’t change anything. All those emotions had to come out in order for me to find peace and acceptance with my physical limitations. It’s a process, but time really does help. If you are struggling, remember that even with JRA you are still the same person – with the same mind and the same heart. That hasn’t changed. What has changed is the fact that you’re getting mentally stronger with every day that passes. Make sure you channel all that strength in a positive direction. 😉

If parents or loved ones of JRA fighters are reading this, please have patience while your children or friends sort out this process and learn to accept this disease and their physical limitations. Don’t make them feel bad if they ask for help. It is really difficult to ask for assistance and admit that you are struggling physically to do a task, especially when you’re a young person who was once active. It makes us feel vulnerable to let others know that we have difficulty doing basic physical tasks. Calling someone “weak” or “lazy” when she is giving it her all is discouraging, so please, please have some compassion and take a moment to walk in that person’s shoes.

Readers, feel free to share your stories or advice in the comments so that we can all learn together.

“Bran thought about it. ‘Can a man still be brave if he’s afraid?’ ‘That is the only time a man can be brave,’ his father told him.” ― George R.R. Martin, A Game of Thrones

 

Sending you all gentle hugs as we keep up the fight,

Ms. Rainbow

[Image by pixabay.com]