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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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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).

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,
❤ Ms. Rainbow

 

Recommended reading:

 

 

 


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December’s Holiday Message: Kindness

kindteresa

Hi everyone! Today’s post has been inspired by the Patient For A Moment theme which asks: If you didn’t have to worry about hurting anyone’s 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 😉 ) 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.

help

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. 😉

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. 🙂

kindhealing

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

Love,
Ms. Rainbow


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When Juvenile Arthritis makes you feel like you’re 90 years old

Hi everyone!

A while back I shared this wonderful video created by a group of teens at the 2011 Juvenile Arthritis conference in Washington, DC. I laughed but sadly connected all too well with one of the statements made by a young lady discussing arthritis – “And sometimes I feel like I’m 90….which stinks.”

When my (Juvenile) Rheumatoid Arthritis is active, I walk stiffly and my knees feel like there are cold knives wedged inside. My hips burn and I have to focus on trying to walk normally. My wrists and fingers get stiff easily and I am constantly having to massage them. I sometimes wonder if this is what it physically feels like to be older – like 90!

Do any of you feel “older” than you are because of your Juvenile Arthritis?

roseWhen I’m in pain and limping, I imagine that I must look old to the outside world. On the inside I hear my joints creak and I know I’m hunching and walking strangely as coldness sets into my joints and causes me to stiffen up.  I imagine that I look tired and haggard. But then I catch a glimpse of a youthful face in the reflection of a shop window and realize that I am still young, despite the contradictory feelings inside. I see a young body which still looks like it can run a few races. And it motivates me to keep going and to not give up.

Reading through arthritis blogs by other young persons, I realize I’m not the only young lady who sometimes walks around feeling like she’s a granny.

Sometimes when I’m around my peers I feel like I’m an old woman. The pain and stiffness make me feel old. While they are running up the stairs, I sometimes have to reach for the railings to support myself. In my lifetime with JRA I have used canes, crutches and wheelchairs at some point, as I’m sure many of you reading this have done also, and perhaps still do.

I also feel old because of my RA-friendly lifestyle. When I’m out with my friends, I try hard to refrain from alcohol and I try to eat well to ensure that my body is getting enough nutrition. When I’m hanging out, guys often make fun of me for choosing juice over a beer, or for refusing to take shots, but I’ve had to force myself to evaluate what is best for my situation right now. (And for those of you who are curious, my RA has surprisingly become more active over the past few years. I am actually still trying to find a medication which can control it. I have started Actemra and I’m hoping to gradually taper my Prednisolone and see if my body can withstand it. Fingers crossed!)

It’s like what Christine Miserandino wrote in the “Spoon Theory.” The difference between being healthy and “sick” is when you’re sick you have to consider how every single action you make will affect your health, something which many young people don’t consider until they’re older.

While television ads blare images of women my age in sky-high, sparkling heels, I’m forced to bypass these trendy shoes and instead opt for padded, comfortable shoes which do help reduce my pain. Since my bones have lost density (from prednisolone usage), I work hard at strengthening my muscles and bones and getting enough calcium in my diet. In addition to the normal concerns 20-something year old ladies have about school, love, work and having kids, I worry about what my life is going to be like in 10 years, in 20 years, in 30 years. What will my bones be like? Will the RA ever stop damaging my joints? Are there more surgeries headed my way?

And there are a million more questions which I wonder about, as I’m sure many of you do too.

When my mind starts thinking like this, I take a deep breath and remind myself to take life one day at a time and often, one step at a time. It’s been a long road thus far with JRA and I know I still have a long road ahead. I have learned that there is no point in worrying about the future when I can’t predict it and I try to enjoy every day with the health and mobility which I currently have.

An old woman may live within me some days, but she is not really me. I don’t have 90 years of life experience to chat about. Rather, I’m a 20-something year old adult with Juvenile Rheumatoid Arthritis. I still love to go out dancing, I still like to get dressed up (when I have the energy to fire up my styling tools haha) and I still like to spend all night laughing with good friends. If you have RA or JRA, you know what I am talking about. Sometimes the management of this disease is overwhelming, but we need to remember that we are still actually young and deserve to enjoy life just like our peers. We may have to fight harder for our lives, but our happiness is worth it, don’t you think? I sure think it is.

As Juvenile Arthritis Awareness month came to a close a few days ago, I want to say that we are all fighting this battle together. It’s true we may not have that luxury of being as carefree about our lives as our friends, but know that you aren’t alone in the challenges which you face. No matter what happens, even with our limps and walking aids and mountains of pills and creaky joints, let’s promise ourselves to keep fighting, to keep laughing and smiling and to keep pushing ahead and living our lives as best as we can.

Like the song by Fun, we are young, after all. 😉

 

Readers, do you ever feel older than you are because of Juvenile Arthritis? Share with me and other readers in the comments. Thanks!

❤ Ms. Rainbow


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July is Juvenile Arthritis Awareness month!

Sometimes life don’t go the way you planned
And we all have days when we just don’t understand
Searching for meaning, it’s not always easy
But your story’s not over, it’s still being told
Your sunrise is coming brighter than gold
You were young, you were free
And you dared to believe
You could be the girl
Who could change the world
Then your life took a turn
And you fell, and it hurt
But you’re still that girl
And you’re gonna change this world.

Still that girl – Britt Nicole

Hi everyone!

July has been designated Juvenile Arthritis Awareness month so I want to dedicate this post especially to all the amazing young people who live with autoimmune arthritis all over the world. For more information on Juvenile Arthritis, click here. I, along with so many of the readers of this site, was diagnosed with Juvenile Rheumatoid Arthritis/Juvenile Idiopathic Arthritis as a child, at age 7. I am now 28.

Over twenty years have passed since I was diagnosed. The strange part is that even with so many advances in kgatmedicine and technology, most persons I meet are still completely unfamiliar with this condition and think I take Panadol. (How great it’d be if that’s all we needed, right?!)When you get a chronic illness as a child, it’s almost like you enter a secret world which few people know about and won’t know about until they get a lot older – that of living with pain and sickness and the accompanying twists and turns. But we do adapt and we learn how to live life as best as we can, and I salute all of us for it.

If you have had Juvenile Arthritis for some time, then you are a pro at handling pain, blood tests, injections, infusions, pills and the nasty side-effects. Some of us have had joint surgeries and know how draining and grueling that process can be, from the pain of surgery to the tedious, painful physical therapy afterward. Most of us have been half-naked/totally naked in front of our medical teams…that’s sure fun, right? Haha. 😛 It all takes a lot of guts. That’s something a lot of grown adults have never experienced, do you know that?

So if someone ever tries to put you down, I want you to realize how amazing you are. Truly. You are TOUGH. Despite the trials we have to endure with arthritis and in the world, I want us all to remember our strength and always know how much we’re worth. Don’t ever let anyone’s lack of awareness make you feel bad. There are going to be numerous times when we feel alone in this situation, but let’s keep our heads up, keep strong and keep doing whatever we have to do in our lives.

Illness does not define a person and I want to say that it’s OKAY to have arthritis or any illness. We are still beautiful ladies and young men and we are still strong and capable of doing anything we want in life. We just have to keep fighting for what we want. Even with arthritis, we are all trying our best and accomplishing amazing things. We are all fighting. On the days when I feel weak, I think about all of you out there who are fighting for your happiness despite this illness, and it makes me fight too. I think about the kindness and compassion that is shared among the arthritis community, especially by young persons who want to make sure other young persons never feel alone, and it warms my heart.

You are all SUPER TROOPER FIGHTERS. 🙂

To all the beautiful youths who fight illness, who work through pain and press on, keep fighting and know that you are all superheroes to me. ❤

Love,
Ms. Rainbow


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Arms were made for hugging, hands for holding…

[Disclaimer: I was not compensated to do this post. Also, I am not a doctor and I have no experience with the mentioned drug. If you are considering trying this drug, please discuss with your doctor and ensure that you obtain official product and safety information. Thank you.]

Hi everyone! I don’t usually relate to ads for arthritis drugs (since they never show young persons), but today I want to speak about a commercial which touched me the first time I saw it. It is for the new Rheumatoid Arthritis drug, Xeljanz, and you can view the ad below:

The spot starts off with the narrator saying “Arms were made for hugging. Hands, for holding. Feet, kicking…better things than the joint pain and swelling of moderate to severe Rheumatoid Arthritis…” I remember the first time I saw this ad on television. Even before I knew it was an ad for an RA drug, those words and images of joints “in real life” resonated with me. If you’ve had autoimmune arthritis for some time, then you know how meaningful a hug can be on a painful day. If you have a special guy to hold your hand, somehow the pain lessens and arthritis takes a backseat as life in all its beauty takes over. Sometimes just playing with your puppy can make the day so much brighter.

I’ve always found it amazing that our arthritis-affected joints are capable of so much. Most of us know what it’s like to have to walk on a swollen ankle or write an exam with painful wrists. If we are diagnosed during childhood, then our affected hands, feet, hips etc. are present during every stage of life onward. From playing at school, hugging friends and family, to dating, first-kisses and hand-holding, to learning to drive, to jobs and marriage, our joints are right there with us, pain or no pain. I love watching the photos from the Show Us Your Hands project, because every picture tells such a beautiful story of strength, hope, determination for life, creativity, style and very often, love.

I agree with the first lines of the ad: our joints were meant for more than feeling pain and stiffness. There is more to life than arthritis and we all deserve amazing and full lives. So even with the pain, let’s freely give our (gentle) hugs and hold hands with our loved ones when we can.

Hope you’re all enjoying your summers, 🙂

Hugs! 😉
Ms. Rainbow


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Hope

[Image by Justin Ried ]

Hope dangles on a string
Like slow spinning redemption
Winding in and winding out
The shine of it has caught my eye
And roped me in

– “Vindicated,” Dashboard Confessional

While recently flaring, I came across two beautiful posts which really made me smile. If you are in pain right now, whether you’re 5 years old or 75 years old, I highly recommend reading these posts. 😉

Elizabeth from The Girl With Arthritis wrote such a touching letter to a friend with arthritis, which can apply to all of us. She says:
“Never let arthritis quiet you down. Be loud. Be proud. Be the person you’ve dreamt of being. A diagnosis defines the way your body works- not the person it contains. A mind is a beautiful thing: Never waste it. Even when your body can’t seem to work right, build your mind and you’ll go farther than you would ever believe. I know feeling broken can break you, but know that there is always a rainbow after a storm.”

Read the rest of this lovely post here: http://arthritisgirl.blogspot.com/2013/05/encouragment-for-arthritis.html

Arianna from Painsomnia shares 10 useful and inspiring Tips For Living Well With Chronic Illness:
“It’s OK to cry. I promise. Chronic illness sufferers are masters at hiding pain and we conceal a multitude behind a smile or an ‘I’m fine.’ Although you have to learn to live with pain, ignoring all of the emotions it brings isn’t healthy. So when a bad day comes along, allow the tears to fall. This doesn’t mean you are weak. It just means you’re allowing yourself to acknowledge the pain.”

Read the rest of her wonderful tips here: http://painsomnia.blogspot.com/2013/05/10-tips-for-living-with-chronic-illness.html

When we’re in pain and watching our joints swell or become gradually damaged (while simultaneously pushing ourselves at school or work or caring for our families) it can get overwhelming, especially if people don’t quite understand what we’re going through. It can make us feel isolated, because we’re trying to manage the physical pains and the disease while trying to lead a “normal” life too. As we continue growing, our worlds constantly change and bring with them new challenges.

As we adjust to all these changes, we may sometimes get frustrated. We may get angry or sad and the tears may come – and that’s okay. We try to be Super Women, but the reality is we’re still human and we’re allowed to express our frustration with this disease. Juggling daily pains and life is not a typical situation and it’s natural that we sometimes get overwhelmed along the way. It helps us figure out our lives with Juvenile Rheumatoid Arthritis and we become a little stronger with every hard time. We just have to ensure that we are strong enough to pick ourselves back up and keep going.

In our rough moments with this disease, when we’re lying in bed wondering What is going on with my body? and What’s going to happen to me? we need to remember that there is always hope. I don’t need to convince you of that – you already know it. If you have arthritis you know what it’s like to wake up feeling like every part of your body has been broken. Yet we find the strength every morning to get off the bed and try. We have hope that despite the pain in our bodies, we can still enjoy a beautiful day. And we do. People with arthritis go to school, work, care for families and live their lives as best as they are able.

If today was a bad day, there is hope that tomorrow will be better. I know that some days are really, really hard and we can suddenly feel like we’ve lost our footing, as the pain takes over our bodies and it seems like things are getting worse instead of better. Hang in there, dear friends. Even though I have lived with the roller coaster ride that is JRA for so long, I still fear the future of my body and wonder how I’m going to manage as I get older. But I try not to worry too much and I focus on enjoying the moments and the health which I currently have. And I hope that whatever life throws at me, I’ll find enough strength to make it through. I hope that we all find the strength to make it through…we will. 😉

If you find yourself caught in a deepening hole of sadness, make the effort to pull yourself out.

Think about what you do have and cherish the fact that your body still functions for the most part. Focus on what you can do and celebrate it. You have already come so far with your arthritis. Realize how strong you are physically and mentally. No matter what happens to you, no matter how much this disease throws you to the ground and drains you, remember that you are strong enough to handle it and you are going to make it through. Remember, too, that you are not alone in this and we are all fighting together.

Let’s wrap ourselves in hope and keep pushing ahead dear friends. ❤

Readers, feel free to share your aches and pains or encouragement for others with arthritis.

 

Wishing you all strength,

Love,
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]


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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.]