RArainbow

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


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Red Band Society on FOX

(Spoiler Alert! You’ve been warned! ;) )

Hi everyone! Today I want to talk about a show that has been making quite an impression on me – FOX’s Red Band Society, which airs on Wednesdays at 9/8c. The show centres on the lives and challenges faced by a few hospitalized teens who are all dealing with various medical conditions. Now, there are quite a few aspects of the show which are pretty unrealistic (such as the fact that these kids are healthy enough to get dressed up, wear make up and drink alcohol but still require in-patient care, the fact that their rooms are amazingly huge, the hospital is amazingly beautiful, their doctor is amazingly beautiful… :P ) but I’ll let it slide for the sake of fiction and television and the fact that I actually do enjoy the core ideas of the show itself.

I am not sure who the target audience for this show is meant to be, but I can certainly say that I relate to the characters quite a lot – having grown up with a chronic illness myself. I may not have the same conditions as the characters in Red Band Society, but I surely relate to the fears and concerns that our young characters face.

In the latest (second) episode, I was really touched by Leo’s story and his fears of feeling alone, being the only person there who has lost his leg due to osteosarcoma. Wearing his false leg, he ends up going to a college party where he drinks and rudely tells his friend Dash that he wants to stay at the party. He ends up making out with a girl there and starts panicking when things start heating up in the bedroom. He insults the girl, she leaves and poor Leo ends up falling on the floor, struggling in pain to get back up. I may not be a teenaged guy, but boy did my heart reach out to Leo in that scene.

Living with arthritis, I could imagine Leo’s physical pain as he tried to walk in his new leg. I also understood his emotions of wanting to fit in, have a drink and just be part of the crowd – it’s so much easier than dealing with the reality which illness slaps you with, isn’t it? I also really felt for him during that make-out scene where the girl starts pulling on his pants and he starts panicking about his false leg. When it comes to young life and illness, these are honest and valid struggles which we all deal with and I’m glad that a mainstream show is highlighting stories like these. This show is an interesting combination of edginess, humour, fantasy and beautiful moments which often get me thinking.

While there are aspects of this show which clearly aren’t realistic, I think the aim of this series is to entertain and inspire and I’m all for that. I’m looking forward to seeing how it all plays out.

Have any of you guys watched “Red Band Society?” What do you think of it?

Hope you’re all keeping well,
<3 Ms. Rainbow


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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!
<3 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!
<3 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! :)

<3 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 Kübler-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).

cando

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,
<3 Ms. Rainbow

 

Recommended reading:

 

 

 


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May is Arthritis Awareness Month!

Hi everyone! Many of you with arthritis will know that May is Arthritis Awareness Month in the USA! Arthritis can be thought of as an umbrella term which encompasses a range of arthritis-related conditions. In honour of the month, the American College of Rheumatology has put together some great resources on their site, which can be used to educate others about arthritis, as well as learn more about our own conditions ourselves.

Also, World Autoimmune Arthritis Day will be held on May 20th! To commemorate the day, a virtual event will be held from May 19th to May 21st at the official website. Make sure you check it out!

I recently discovered a very creative and funny campaign by Scope, which aims to “End the awkward” when it comes to interacting with persons with various abilities (click here to view it all). I absolutely love these ads – they break down the awkwardness and give tips on how to handle a range of situations. What I love about these ads is the fact that they show/teach the public that a person who is differently-abled is just like anyone else, and should be treated as such.

With arthritis, many of us have to deal with stares, isolation, pre-judgment and insensitive comments from persons who may not fully understand how to respectfully treat someone with a medical condition. The word “disease” is a scary word to many healthy persons, and often causes many persons to act awkwardly. This is why the campaign by Scope is so great – because overall it teaches us that we must be respectful and accepting of whatever “difference” someone may have.

And while campaigns like these are amazing in the grand scale, there is still a lot we can do on an individual basis to make our lives easier in this respect. If someone is being mean to you, or making uninformed assumptions about you, then take control of the situation and stand up for yourself. You don’t need to get overly worked up about it, but speak up for yourself. Let people know that young people, teens and little babies get arthritis. Arthritis is part of our lives and we should never have to feel bad about that. Even with arthritis we are trying hard and I respect and admire every single one of you so much.

Happy arthritis month guys!
<3 Ms. Rainbow

 


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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 <3 ,
Ms. Rainbow


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March is childhood arthritis month!

Hi everyone! The Arthritis Society of Canada has declared March as childhood arthritis month. Make sure you check out their site and spread the word about childhood arthritis.

ca-arthrtis

Awareness of childhood arthritis is important, because it is such an unknown condition. Autoimmune arthritis is sometimes used as an umbrella term to include conditions such as Juvenile Idiopathic Arthritis, Psoriatic Arthritis, Systemic Lupus Erythematosus (SLE), Vasculitis etc. – all conditions in which the immune system starts to attack parts of own bodies, causing inflammation and destruction.

I recently found this touching video of (then) 5-year old Sam Lincoln, who lives with Juvenile Arthritis. To see a tiny young person dealing with such a painful illness really hurts my heart. Sam, I wish you best of luck in your treatment and hope your arthritis will calm down eventually!

If you have grown up with autoimmune arthritis, you will know firsthand the challenges of being a chronically ill child in a world which is not used to seeing kids with chronic illness. Children with illness are often teased due to their limps or physical challenges. Perhaps worse than that is the fact that they are often believed to be faking the pain.

If someone puts you down or does not understand your arthritis, stand up for yourself. You don’t have to get angry, but you can tell them about your arthritis and how it affects you. Use the opportunity to educate others. How will people know what we’re dealing with if we don’t speak up, right?

Happy childhood arthritis month guys! Sending you all gentle hugs! ;)

<3 Ms. Rainbow


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Happy first birthday to RA Rainbow!

Hi everyone! I just realized that it’s been a year since I first posted (and started!) this website! So happy first birthday to RA Rainbow! :)

birthday

(Image by pixabay.com)

I don’t think I’ve mentioned it on this site, but when I started writing articles on here, I was actually laid up in bed, healing from a foot surgery. I wasn’t sure if anyone would read what I wrote, but I figured I’d put it out there in case there were any other young persons who could relate to the same things I’ve experienced (and still experience) with autoimmune arthritis. And the response so far has been positive and often touching. Thank you guys for being part of this journey with me and for sharing your lives and experiences with me as well – together we learn so much. Through this site I have been able to connect with so many wonderful people who face similar situations and I’m thankful for that. Together, we are getting through life with our respective situations and that’s pretty amazing.

THANK YOU!!!! :) ;)

Have a great weekend everyone!
<3 Ms. Rainbow

 


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SeriousFun camps for kids and teens with arthritis

Hi everyone! Today I wanted to share something very magical which I discovered a while ago – the global network of SeriousFun camps! The SeriousFun camps are specifically designed for children with chronic or life-threatening illnesses who ordinarily would not have the opportunity to go to a regular summer camp due to their condition. At camp kids can do archery, boating, arts and crafts, skits, adventure courses and just have a great time. These camps offer an amazing chance for kids to bond with others like themselves in a safe, universally accessible environment (at no cost!). The concept for these camps started in 1988 by the late actor, Mr. Paul Newman, who launched The Hole in the Wall Gang Camp for children with serious illnesses in Ashford, CT. There is currently a whole network of camps across the USA and around the world! Many of these camps hold sessions for children and teens with arthritis! Can you believe that? A camp for kids with arthritis?! :)

The camps run year around, with weekend camps during the year and week-long sessions during the summer. I am much too old to apply as a camper, but if you are eligible, you might want to check it out! Check out the list of camps here.

If you have ever been to one of these camps, please share your experience in the comments!

Thanks and hope you guys are hanging in there,

<3 Ms. Rainbow

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