RArainbow

A resource blog for young women living with Arthritis


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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!
❤ 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! 😉

❤ 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!
❤ 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,

❤ 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.

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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?

(If you enjoyed this post and would like to keep up with future posts, subscribe through email, follow with your own WordPress blog or Like RARainbow on Facebook. Thanks!)

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

Sending gentle hugs, 😉
Ms. Rainbow


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Talking about arthritis

coolerIt was lunch time. My co-worker and I grabbed a couple of juice drinks from the employee kitchen. The drinks weren’t cold, so he suggested getting some ice from the communal cooler which had been keeping an assortment of beverages chilled that morning. By the time we opened it, the cooler was almost emptied of its contents, save for the half-melted bits of ice which were floating in the cold water. As I examined it more closely, I noticed specks of dust and debris gently gliding through the water.

I was already fighting to endure a painful morning with JRA and I didn’t want to add the flu/cold to my list.

“I’m going to skip the ice,” I decided. “About fifty people put their hands in here already!”

My co-worker stared at me incredulously. “Oh gosh. Are you one of those obsessive germaphobe girls who needs everything to be clean? It’s just ice. A few germs aren’t going to hurt you.”

I laughed at his words and pondered what to tell him. I didn’t know him very well, but I wanted to tell him the truth – that if I got sick that day, it could take me at least a month to feel better again. That me getting sick could lead to days of not eating, of losing weight, flare-ups, hours of miserable pain, days glued to bed, sleepless nights, missed work, doctor visits and generally a super-crappy situation.

So I told him. I told him about my arthritis and I explained how my wonky immune system was not very effective at shielding me from germs. He didn’t laugh, or try to convince me that I had what his grandmother had. Instead, he listened and he said that he understood. Later that day he even came back to ask me some questions about my condition and how it affected me. We became closer after that.

And though we don’t work together anymore, we are still friends.

Speaking about arthritis when you’re a young person

Sometimes, it’s really hard to speak about our arthritis. Especially as young people, letting people know that we have arthritis can make us feel vulnerable. It opens the doors to potential negativity, loss of friends and misunderstanding. On the other hand, it can open doors to positivity, understanding, care and friendship too. In the story I related above, I am glad that I chose to let my co-worker know about my arthritis, as it strengthened our friendship. In a strange way, the reactions people have when you tell them about your condition reveals a lot about their characters. Surround yourself with supportive persons, not those who can’t accept what you have to deal with.

Having arthritis is nothing to be ashamed about – we are all dealing with our conditions as best as we can, and that is amazing to me. Telling people about your arthritis is, however, a personal decision and there are no rules to it – do what is best for you and what makes you feel comfortable. Some people are very open about it, while others are more private. It’s completely up to you to decide what feels right.

I loved this perspective from Sara Nash at HealthCentral.com, author of this article titled It’s My Prerogative: Who to Tell About My Rheumatoid Arthritis Diagnosis. Check out the accompanying comic strip too.

Readers, how do you deal with speaking about arthritis? Do you openly tell people about your arthritis, or do you prefer to speak about it on a need-to-know basis? Let me know in the comments. Thanks!

Hope you are all well!
Ms. Rainbow

 

[Image by Pixabay.com]


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Pro Infirmis – “Because who is perfect?” campaign

Hello everyone! Today I wanted to share this amazing video which was created for International Day of Persons with Disabilities earlier this month.

The video’s description states: “Disabled mannequins will be eliciting astonished looks from passers-by on Zurich’s Bahnhofstrasse today. Between the perfect mannequins, there will be figures with scoliosis or brittle bone disease modelling the latest fashions. One will have shortened limbs; the other a malformed spine. The campaign has been devised for the International Day of Persons with Disabilities by Pro Infirmis, an organisation for the disabled. Entitled “Because who is perfect? Get closer.”, it is designed to provoke reflection on the acceptance of people with disabilities. Director Alain Gsponer has captured the campaign as a short film.”

Personally, I loved this video and everything it stands for. Our world has become seemingly obsessed with the idea of “perfection” and “perfect” bodies (whatever that may mean). So where do persons with disabilities/physical challenges/illness stand in this scenario? Not only do we have to contend with the typical pressures of weight and height which a healthy person faces – but we often have to deal with the fact that our bodies may be physically different from that of a healthy person. Some of us have joint damage, crooked limbs, wheelchairs, walking aids etc. And there is absolutely nothing wrong with that. We are fighters and we are dealing with our situations as best as we can – and I salute all of us for it.

By showcasing the mannequins with disabilities, the managers thrust these body types into the spotlight and made the statement that these bodies are worthy and beautiful. And they sure are.

Mark Zumbühl of the Pro Infirmis Executive Board summarizes the heart of the campaign perfectly: “We often go chasing after ideals instead of accepting life in all its diversity. Pro Infirmis strives especially for the acceptance of disability and the inclusion of people with disabilities.”

So true, right? If we spend all our energy on these conditioned ideals, we may lose out on the beauty right around us. Every person deserves to feel beautiful and to feel accepted. I don’t know why our world has become so overly-critical about appearance and why many people enjoy being mean and putting other people down. But if people are being mean to you, please don’t listen to them. Rather, listen to yourself. If you body has been affected by illness or you were born a little different from others, what does it matter? You are still capable and you are still you. And that’s pretty beautiful. 😉

Readers, what do you think of the video? Feel free to share your opinions in the comments.

Thanks!
Ms. Rainbow


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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. 🙂

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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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Young Adult Panel at the 2013 Juvenile Arthritis Conference

Hi everyone!
Today I found a video which was extremely useful to me and I wanted to share it with all of you. It’s taken from this year’s Juvenile Arthritis Conference (put on by the Arthritis Foundation) and features the Young Adult Panel general session. I could relate very much to the stories of these young persons who have spent most of their lives living and adapting with arthritis.

I found myself nodding at so many of the points which they raised. I have never been to a JA conference (or camp), but I do hope that I will be able to attend one at some point in my life. It looks amazing! 🙂

One of the main points from this video is worth repeating. The panelists discuss the concept that we are not arthritis. Really, we are young persons who are living with arthritis, fighting it out as best as we know how. I completely agree. It’s easy to feel overwhelmed by this illness, especially when persons don’t quite understand it. For me personally, having arthritis has become a way of life. The visits to doctors, flares, side effects, menthol patches, heat packs and medications have become normal to me. Arthritis is a huge part of my life, but it’s not the only thing in my life (thank goodness! haha 😛 ) and it doesn’t define who I am. To all my fellow arthritis fighters out there, remember that you are smart, you are unique, you are STRONG and you have a lot to offer this world, even with arthritis. 😉 And when you feel down, remember that all around the world, we are all fighting this together.

Enjoy the video and feel free to discuss any of the issues raised in the comments below. Thanks! 🙂
Ms. Rainbow