RArainbow

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


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March is childhood arthritis month!

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

ca-arthrtis

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

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

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

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

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

<3 Ms. Rainbow


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Happy first birthday to RA Rainbow!

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

birthday

(Image by pixabay.com)

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

THANK YOU!!!! :) ;)

Have a great weekend everyone!
<3 Ms. Rainbow

 


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SeriousFun camps for kids and teens with arthritis

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

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

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

Thanks and hope you guys are hanging in there,

<3 Ms. Rainbow


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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.

rd

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?

(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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Happy new year!

Happy new year everyone! I hope you all had a wonderful holiday season and wish you all the best for this new year 2014! Did any of you make any special new year’s resolutions? Share them with me! ;)

This year I hope to continue to be as healthy as I can with my exercise and nutrition. And to keep trying, trying, trying in everything I do!

I recently read this quote from the movie The curious case of Benjamin Button and wanted to share it with you guys:

“For what it’s worth: it’s never too late or, in my case, too early to be whoever you want to be. There’s no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you’re proud of. If you find that you’re not, I hope you have the strength to start all over again.”

I love it! Some great words to remember as we start a brand new year.

I also want to share this amazing video by Pip and Nathan Parrett (for those of you who follow The Voice, both guys were on Season 2). I was actually flaring a couple nights ago and couldn’t fall asleep ’cause the pain was too much. I put on this video and it really entertained me and helped my body to relax. Thank goodness for music…really! And as we start the new year, I want to say thank you guys for all your support, for your kind comments, for your suggestions, advice and for your blog posts. I love learning together with all of you. You are all amazing! :)

Wishing all of you an amazing, happy, productive and manageable pain/pain-free year,
Ms. Rainbow


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Holiday party tips: Juvenile Arthritis style

Hi everyone! Christmas and New Year’s are quickly approaching and, for many ladies, this means dressing up and going out to fancy parties with friends and loved ones. As you all know, having autoimmune arthritis can really sap your energy. Personally, my arthritis is currently quite active as I’ve become allergic to both Actemra and Remicade :(  and I’m waiting a bit before I try a new treatment. With a limited supply of energy (spoons!), spending an hour using my flat iron is not at the top of my priority list these days. But, I think we all deserve to look and feel beautiful, even if we are flaring with arthritis. Do you agree? ;)

In this post I’ve compiled some tips for looking put together and preparing for a party even if our arthritis is active and our energy is limited. I hope you’ll find them helpful. Please share any tips and tricks you have so that we can all learn together. ;)

1. Managing our hair
I’ve written a bit about hair care in the past (click here to read). If you have difficulty caring for your hair, but still want to maintain a stylish look, consider getting a haircut. It will make shampooing and styling a lot easier on the joints. Lucky for us, super-short hair and pixie cuts are very fashionable these days. This article from Marie Claire gives some pretty examples of hairstyles you can consider.

When you have arthritis, holding a blow dryer or flat iron for more than a few minutes can be a very painful experience. If you’re experiencing pain, skip the blow drying, rub a little bit of hair serum onto your hair and allow to air-dry.

I found some creative, “lazy” hairstyle ideas on Pinterest, which you can view here for some inspiration. This article from TheDailyMuse.com also lists some easy ideas for styling hair, while the Lazy Girl’s Guide to Hair Care by BeautyRiot.com gives some tips on looking stylish without too much effort.

2. Make-up
If you’re flaring, putting on make-up is probably the least of your worries. But you can still look polished even without a full face of make-up. Consider applying a little eye-liner or a dab of lipstick/tinted lip balm to brighten your face. If you need coverage on your face, think about using a tinted moisturizer or a BB cream to even out your complexion.

3. Shoes
Shoes, shoes, shoes. With the cold weather affecting many of us, this season may bring some extra joint pain and stiffness. That means wearing shoes that are supportive and comfortable, which will aid our walking and hopefully minimize potential joint damage. Now, while wearing our fabulously supportive and comfy arthritis-friendly shoes, it’s very likely that when we go to our Christmas parties the following situation is going to happen:

flats

[Hehe. How many of us can relate to the cartoon above? I want to give a huge thanks to Ms. Bianca from 80 Year Old Teenager for letting me use her drawing. She is so talented and I love her comics! :)]

But you know what? Even if you are the only girl at the party not wearing heels, make sure you rock out your comfy shoes. ;) Opt for comfortable boots (which will not only support your ankles, but keep them warm), sandals and flats. If you need more arch support, insert insoles/supports into your shoes. Check out BarkingDogShoes.com for some cute, comfortable shoe ideas. I wrote a post on saying goodbye to high-heels a while back which you can check out here for more ideas.

4. Keep warm!
As I mentioned in the point above, the colder weather tends to affect many of us. Ensure that you dress warmly so that your joints can be comfortable. Wear layers, jackets, leggings, scarves and boots to help keep joints warm.

5. Walk with back-up pills
You never know when a flare is going to hit, so make sure you walk with some (doctor-approved) pain medication just in case you need it.

6. Go easy on the alcohol
(Please make sure you’re of legal drinking age if you do plan to consume alcohol.) If you are going to drink at a party, make sure that there will be no interaction with the medications you’re taking. We have enough on our plates without worrying that the alcohol will interact with the medications and cause more trouble for our bodies. Doctors often give warnings about consuming alcohol while taking Methotrexate, so make sure it’s safe to have a drink if you plan to do so.

7. Be confident and have fun!
accessoryYep! It might sound cheesy, but it’s true. Even though arthritis may make us feel crappy and may even hinder our abilities to groom ourselves, it doesn’t mean that we shouldn’t go out and take part in the festivities. If you are having problems styling your hair, or your hair is falling out due to side-effects of medications, or your face is puffy due to Prednisolone or you can’t wear heels and indeed find yourself being the only girl at the party wearing flat shoes….don’t worry about it. Use your limited energy to go out and have yourself a good time this holiday season. Hey, after everything we go through with our arthritis, I think we all deserve it.  ;)

 

Readers, if you have any holiday tips of your own, please share them in the comments below. Thank you! :)

Have a wonderful holiday season everyone!
Love and best wishes,
Ms. Rainbow


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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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