RArainbow

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


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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).

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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,
<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.

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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! :)

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

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

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

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

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

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

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

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

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

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

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

Readers, have any of you seen The Lego Movie? What messages did you take away from it? Let me know in the comments below. Thanks! I hope you are all doing well!
<3
Ms. Rainbow


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What Rheumatoid awareness would mean to me

Hi everyone! Today’s post is part of a blog carnival being hosted by Kelly of RA Warrior. As some of you may know, February 2nd has been designated as Rheumatoid Awareness Day. Kelly asks the question, “What difference do you think it would make if Rheumatoid Disease were recognized for what it is by everyone…?I encourage all of you with sites to write an entry for this topic, so you can add your voice to the mix. Feel free to leave comments on this post too.

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I write today from the perspective of a 20-something year old woman, who has been living with Juvenile Rheumatoid Arthritis/Juvenile Idiopathic Arthritis for the past 22 years.

When I was diagnosed at age 7, absolutely no one in my circle knew about JRA. When I spoke about it with peers, teachers and other adults, no one knew what I was talking about. I can’t blame them, for I didn’t know about it either. Twenty-two years later, I am on treatment, I understand my illness and I’m able to educate others about it. I’ve been able to accomplish many of my goals and I continue to work hard toward my goals. But surprisingly, in our technology-saturated world where information about absolutely anything and anyone can make global headlines within seconds, it’s still the case that very few people I meet know about Rheumatoid Disease/Rheumatoid Arthritis/autoimmune arthritis. Even fewer are aware that babies, kids and teens can get autoimmune arthritis. Why is there such a gap and lack of awareness of autoimmune arthritis? What can we do to educate and break the common misconceptions?

Like so many with arthritis, when I tell people about my arthritis, I’m still met with variations of the following statements:
“Oh, yeah. Arthritis. I have it too. Let me show you my knee….”
“You are young! You don’t know what pain feels like!”
“Oh, my grandmother has that too.”
“Thank goodness I don’t have your disease!”
“I’m so glad I’m not sick like you. I hate pills. I wouldn’t be able to take them every single day.”
“Haha. Arthritis? You mean like what old people have?”

The statements which I listed above have been coming at me for the past twenty two years. It seems terrible, but it’s really taught me a lot in the art of patience and communicating with people ;) . When people make comments like the ones I shared above, I use the opportunity to educate them about arthritis (if I have the energy that day :( ). I think these statements clearly show a greater need for understanding of this condition, and sensitivity overall.

Particularly, there is a need for persons to be aware that young people can indeed get chronic illnesses too. As a child growing up with arthritis, I was often dismissed by adults about the severity of this illness. Young children with arthritis are still learning to communicate and very likely will not have the ability to stand up for themselves and educate. And it’s for this reason that I really, really wish that the world knew more about autoimmune arthritis. A more aware world can help cushion and support those who are already in pain.

Rheumatoid awareness would mean a lot to me, as I wouldn’t have to go through the exhausting effort of explaining this illness to other people (losing a lot of precious spoons in the process). I wouldn’t have to engage in the tiring battle of words where I have to explain my wonky immune system to someone who insists that Tylenol can cure my pains. I wouldn’t have to worry about people laughing at me when I struggle to turn a doorknob or calling me weak when I can’t twist the bottle cap off my drink.

I don’t take pills because I enjoy taking them or find them delicious. I take them because if I don’t, I’ll be unable to move. Getting poked with needles is not fun to me by any means, but it’s a necessary part of life with chronic illness. We are doing what we have to do.

I recall this wonderful cartoon by RAGuy, in which he compared the responses that people had to various diseases. Like RAGuy, I don’t compare autoimmune arthritis to other illnesses – every case of illness is unique and I support and salute every person who has to endure ill health. But I do wish that autoimmune arthritis could garner the same respect and support as any other illness, instead of being seen as a very trivial condition.

I wish that people took the time to understand how this destructive condition impacts an individual’s life, instead of just thinking “I’m glad it isn’t me.” Perhaps people would be kinder if they genuinely understood that this condition brings extreme pain and joint destruction and fatigue – and that it could happen to anyone.

kind

Rheumatoid awareness/awareness of autoimmune illnesses is slow. But I encourage you all to keep talking and keep those conversations flowing. I encourage you to be your own advocate. In my last post, Talking about arthritis, I shared an incident where I discussed my arthritis with a co-worker and was met with true understanding and compassion. At times it is scary (and exhausting) to speak about arthritis, but I have learned that it is often necessary. And though there will be many people who simply don’t get it, there will also be others who do.

Stand up for yourself and educate others about your condition, especially if what they are saying seems insensitive to you. We want people to be kind and understanding, but no one can know what we’re going through unless we tell them, right?

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Readers, what would awareness mean to you? Share your thoughts in the comments below. Thanks!

Sending gentle hugs, ;)
Ms. Rainbow

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