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! ūüôā 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. ūüėČ

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 ūüė¶ ). 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 ‚Äď 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 ‚Äď it’s the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now ‚Äď 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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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! ūüėČ ) 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 K√ľbler-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 ūüėČ ). 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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December’s Holiday Message: Kindness

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Hi everyone! Today’s post has been inspired by the Patient For A Moment¬†theme which¬†asks:¬†If you didn‚Äôt have to worry about hurting anyone‚Äôs feelings or being prim and proper, what is that you would ask for or want people to know? Do you have a message of encouragement for our community? A request for support or encouragement or even basic understanding? This month’s blog Carnival is being hosted by Abigail at Hidden Courage¬†and I want to thank her for asking a very thought-provoking question.¬†(You¬†can read¬†the other amazing posts in this series here.)

Having grown up with JRA, I’ve had to navigate life with this condition. I don’t have to explain how that works to those of you who also live with autoimmune arthritis – you all know about studying for exams while waiting at the hospital, going dancing with creaky joints,¬†walking with swollen¬†ankles¬†and working with pain. Somehow, through blood, sweat and tears (and smiles and laughs too ūüėČ )¬†we manage. If you’re a reader of this site, you’ll know that it’s been almost 22 years since I was diagnosed with JRA. The irony is that the hardest part of living with autoimmune arthritis hasn’t been the pain and destruction of the condition. The hardest part for me has¬†been having to live in a world where many people aren’t aware that autoimmune arthritis exists and can affect young persons. It’s been the not believing, the scoffs, the blank stares, the stares when I limp and¬†the insensitivity – because I have a condition which I fight every day.

And I know I’m not alone in this. (In the past I’ve written quite a bit on this topic¬†and given some ideas on dealing with negativity.)

There is something very wrong when kids/adults who¬†limp, use wheelchairs, have illnesses or physical challenges¬†etc. are bullied or teased and made to feel bad about situations over which they have no control.¬†There is something wrong when kids/young adults/adults who are living with the¬†extreme pain of autoimmune arthritis are laughed at because we’re “too young” for arthritis and young bodies can’t possibly know what pain feels like.

Instead of making¬†persons feel bad, why don’t we lift them up? The bullying, the teasing and the thoughtless comments are unnecessary. Particularly on social media it’s almost become a trend of sorts to bully and to pick apart people’s appearances (OMG she’s so fat! OMG she’s skinnier than a stick!). As someone who has experienced extremes of weight gain due to prednisolone, and weight loss due to¬†severe illness, it’s¬†challenging when you are trying to fight an illness and attempting to get through a painful day and¬†you have to deal with the insensitive words of others, too. If someone puts you down or crosses the line, make sure you stand up for yourself. You don’t have to get angry or be rude about it, but you can speak up. You can even educate.

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As I’ve gotten older, I have become better at educating persons about my arthritis. Sometimes people get it and sometimes¬†I meet people who¬†simply don’t care. I don’t lose sleep over the people that don’t care, because I’ve met so many amazing people who do. I’ve realized that the persons who have stuck by my side are incredibly beautiful people and I do feel lucky to have them in my life.

My holiday message is that before we judge others, we make sure that we understand their situations. Let’s take the time to¬†get¬†to know¬†them¬†and see what they face on a daily basis before we pass judgment on them. And if we are able to help someone who clearly needs help, then let’s help. Sometimes just lending a listening ear, sharing a hug or giving¬†a word of encouragement can impact someone’s mood and help¬†him/her through a rough time. I know I sound like a Hallmark card, but it is true. ūüėČ

Being kind doesn’t have to be large-scale. It doesn’t just mean organizing fund raisers¬†or participating in awareness marathons. If you can do those things, that’s amazing and commendable. But kindness can come from such simple actions. Sometimes it means listening to someone when they’re going through a rough patch. Sometimes it means NOT saying that rude comment or pointing out what you perceive as a¬†flaw. Sometimes it means just smiling at someone who looks like they’re having a hard day.

In some of my most painful moments I’ve had strangers help me out –¬†by making a joke, opening a door or helping me to lift a suitcase when my hands and elbows were feeling broken.¬†Those moments gave me the encouragement I needed to continue on my journey. Having arthritis has heightened my awareness of the fact that all around me there are probably people¬†who are hurting, physically or emotionally. And¬†I try to remember that – that we need to go easy on one another and encourage and support.¬†I’d like to thank all the amazing, kind souls who still put out positivity into the world.¬†You help so many people –¬†thank you. ūüôā

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Readers, what are your holiday messages to others? Feel free to discuss in the comments below.

Love,
Ms. Rainbow


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Today is World Autoimmune Arthritis Day!

Today is World Autoimmune Arthritis Day, which aims to educate persons about autoimmune diseases such as Lupus, Sjogren’s Syndrome, Juvenile Rheumatoid Arthritis, Rheumatoid Arthritis, Psoriatic Arthritis, Mixed Connective Tissue Disease¬†and Ankylosing Spondylitis¬†(just to name a few). I encourage you to check WorldAutoimmuneArthritisDay.org¬†(hosted by the International Autoimmune Arthritis Movement) which has organized an amazing and informative¬†world-wide online convention today.

Speaking from a young person’s perspective, I can say that growing up and living¬†with Juvenile Rheumatoid Arthritis has been¬†challenging simply¬†because it’s not a well-known condition.¬†Many people assume I have osteoarthritis and think that arthritis is no big deal.¬†I think if more people were aware that autoimmune arthritis exists in¬†persons of all ages¬†and causes extreme daily pain and joint damage, it would help millions of persons who do¬†live with¬†autoimmune arthritis. We wouldn’t have to fear speaking about this disease¬†and being¬†judged for it. Kids wouldn’t have to worry about being laughed at¬†or being¬†called “old” when they try to explain this condition to others.

Awareness is important to help us learn to be more compassionate to one another. Instead of teasing or getting angry at someone¬†because¬†he/she is¬†struggling physically, let’s stop and take a look at the bigger picture. What¬†may be¬†funny to¬†us in that moment can really hurt someone who is already hurting.¬†Let’s try to be kinder to one another. What do you say? ūüėČ

In honour of today, I’d like to share the following video with you entitled “The Faces of Arthritis.” To all the amazingly strong people who fight autoimmune conditions everyday, please keep pushing forward – you are all my inspiration! To all the people around the world who support others and who are always willing to lend a helping hand, thank you for your kindness. ūüôā

‚ÄúBe kind, for everyone you meet is fighting a hard battle” – Anonymous

 

All the best,

Ms. Rainbow