RArainbow

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


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How to feel confident when people stare at you because you limp

When my (Juvenile) Rheumatoid Arthritis is acting up, it makes me feel drained and tired. Instead of feeling like a young woman, I feel like I have lived through a war and I’ve somehow fast-forwarded into my 90s. I imagine that my hair is grey and that I look haggard. I try to hide my pain, but I still fear it’ll show on my face that I feel worn down. My knees stiffen and I hobble, hoping that no one will notice that I am limping badly. I don’t want any attention at this point. I certainly don’t want any cute guys to stare at me while I’m in such a state! If they came over I’d run (well, hobble) in the other direction because I wouldn’t want any of them to see me limping. I just want to fade into the background and I don’t want anyone to look at me.

Have any of you ever felt like this when you limp? That’s a pretty sad way for a young woman (or man, or person of any age) to feel, right? I sure think so. flowerWhen I was younger, that’s how I’d feel when my problematic ankles and knees caused me to limp and I had to walk in public. I felt self-conscious, especially because people would stare. It was tough dealing with stares as a child, but gradually I got used to it. As I grew up, my skin thickened, I became more confident in myself and I learned to not worry about what other persons thought. It’s only natural that persons will stare (though it’s still rude!) at something they’re not used to seeing. Now that I have a fused ankle, my limp comes about more often, which means my feet are getting stared at a lot. It took some time to get used to the almost-constant stares, but I’ve been working at accepting it as part of the amazing-young-people-with-arthritis situation ;). I’d like to share some Rainbow tips with you 😉 :

1. Let’s start with the superficial first. Take pride in your appearance. Okay, so you’re limping. You might have some joint damage so your hands look a bit crooked, your knees a bit swollen and your elbow can’t straighten. That does NOT mean you’ve suddenly become unattractive and are now disqualified from ever looking beautiful! You are beautiful at this moment. So dress your beautiful body in whatever you love. Get rid of the oversized pants and wear clothes that make you feel good about yourself. You’re already standing out with your limp so you might as well stop trying to fade into the background. That isn’t going to happen. Put on a little make-up or do your hair. Paint your toe nails in your favourite colour since your feet are getting all this extra attention ;). It doesn’t matter what you wear specifically. The key here is that you must feel good about how you look, no matter what physical challenges you are dealing with. There’s no need to hide your beautiful self. Let’s treat our bodies kindly, ladies.

2. You’re getting attention. Make the most of it. Sometimes when I’m limping I catch people staring at my feet. I also have a surgery scar on one of my ankles and I often find guys staring at it in surprise. I usually ignore stares, but sometimes I’ll smile at my starers. It catches them off guard. Sometimes they look surprised and sometimes they smile back. Sometimes they get embarrassed and tell me hello. A smile is an amazing way to soften a tense situation. Now, I don’t really recommend you go around smiling at strangers like you’re crazy. But once in a while you can try it and see what reactions you get. If you prefer not to smile, then at least try to enjoy the attention a little bit. Which brings me to the next point….

3. Everyone is staring at you. Including cute guys your own age. You’re a beautiful young woman. Enjoy it! Guess what, friends? Many women pay big bucks for beauty products, make-up, clothes, breast implants etc. just so they can stand out from the mass of females and get attention. Congratulations to you – all you have to do is walk and people will notice you. And some of these people are definitely going to be guys your own age. I know that sounds deathly scary when you are limping, but think about this: even if a guy is noticing your limp (or walking aid, or wheelchair, or surgery scar), he is still noticing you. Whether we want this attention or not, guys are noticing us because we stand out due to the way we walk. I want you to realize that limping doesn’t make you unattractive – it’s just means you walk differently. No decent guy is going to care that you limp. A truly decent guy is going to be concerned and will want to make sure you aren’t stressing your body. Soon after my ankle surgery, I remember heading out to the supermarket to do some shopping. I was sporting a fresh surgery scar, an amazing limp and a glamorous granny-style cane to help me steady myself as I learned how to walk again. I remember most people STARING at me, but I ignored it because I was just happy to be able to walk again. I also remember a lot of young guys staring and then smiling encouragingly at me. Although it was weird being stared at by almost every person that day, it was not a completely negative experience.

4. Love yourself with your limp. Or walking stick. Or brace. In the past I’ve written about loving ourselves and learning to accept our physical limitations with arthritis as well as the way arthritis may physically affect our bodies. Part of accepting arthritis means embracing everything about this disease  – including the fact that we may limp from time to time (or all the time),  or that we may have to use walking aids or wheelchairs. There is no shame in any of this. I’ve learned to accept that I am a woman who sometimes walks with a limp, in addition to possessing so many other qualities. Loving ourselves and growing that confidence with arthritis can take some time, but we surely deserve it for everything we endure every day. Do you agree? If we are always going to be stared at, we might as well start enjoying this attention, don’t you think? Let’s love ourselves, love the way we walk and feel comfortable. And if we feel brave enough, smile :D. It is just too much pressure to walk around feeling insecure about something which is part of us. Once we show that we are comfortable and confident, it will make others feel comfortable too and they will hopefully be able to see beyond the limp.

Further reading:

Readers, how do you deal with stares from strangers due to your limp, walking aid etc.? Please share your suggestions, questions or experiences so we can all learn together. Thank you!

Hope you’re all well,
❤ Ms. Rainbow

[Image by pixabay.com]

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Infusion tips

[Disclaimer: Today’s discussion points come from my personal experiences as a patient. Always seek medical advice from your doctor.]

Hi everyone! Many of you may be aware that certain biologic medications are administered via intravenous infusion to treat autoimmune arthritis. Perhaps you are at a point where you and your doctor are considering some of these medications. Today I’m going to discuss some tips to make infusions a little more comfortable and a little less scary ;).

Before I started getting medication administered via infusions, the notion of getting my medication through an IV every month really did not appeal to me. But once I got accustomed to the process, I realized there was really nothing to worry about. I actually started to look forward to my infusion day every month, because it was the one day I had a chance to simply relax and catch up on my reading for a few hours! If you are going to start infusions soon, there is no need to worry. I’ve put together some tips which will hopefully make the process a bit more comfortable:

1. Dress comfortably
Since you’re probably going to be lying on a bed or sitting on a chair for a few hours, you may as well dress comfortably. Personally, I like to wear a simple shirt and leggings, as they are soft and allow for easy movement.

Another reason to dress comfortably is the fact that you may have to use the bathroom during your infusion time. The steps to this glamorous dance involve dragging along the IV pole and trying to use the bathroom while trying not to disturb the tubes on your hand too much ;). The first time you use the bathroom will be challenging/hilarious and then you’ll become a pro at it, trust me ;).

2. Keep warm
Hospitals can often be cold, so make sure you come prepared with socks, a hoodie, a scarf or blanket if necessary.

3. Use your time
Since you may have to stay at the hospital for a few hours, it’s a great opportunity for you to catch up on your home-work assignments or readings ;). If you prefer to keep school/work out of the mix for the day, bring along your favourite books, magazines, music or your laptop to help pass the time. For the more artistic patients, make use of the time by working on an art project or painting or drawing. There’s nothing wrong with bringing a little glitter into the infusion room ;).

4. Bring snacks and drinks
Pack a few of your favourite snacks to keep you from getting hungry and drink fluids to stay hydrated.

5. Bring along a favourite toy
This point is aimed toward younger patients. Since infusion time can be a scary experience for younger ones, bring along a favourite toy or story-book to make them feel more comfortable.

6. Alert your doctor or nurse if you suddenly feel sick or notice anything unusual
There is potential for an individual to develop an allergic reaction to biologic medications. Therefore, make sure that you let your doctor or nurse know if you suddenly feel light-headed or notice any itching or rashes.

For all those who undergo infusions, feel free to leave your own tips for others so that we can all learn together. Thank you!

I also found some great articles which I’ve shared below:

All the best,

Ms. Rainbow


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“Instructions for a bad day” and “To this day” by Shane Koyczan

Hi everyone! How are you guys doing? Hope you are all enjoying your summers/holidays wherever you are! 🙂 I apologize for my lack of blog posts lately. Work has been keeping me very busy and I sadly don’t have a lot of energy leftover to be online as much as I’d like. I tend to update my Facebook page https://www.facebook.com/rarainbowsite more often, so feel free to ‘Like’ me on there if you wish. 😉

Today I want to share a couple spoken word poems by the very talented Shane Koyczan. I first heard Shane’s poem Instructions for a bad day after the wonderful Elizabeth of The Girl With Arthritis posted it on her page…co-incidentally when I was flaring and having a bad arthritis day. As someone who loves reading and writing, I absolutely loved Shane’s poem. If I had my way, I’d make every person on earth listen to it ;). As someone whose been living with autoimmune arthritis for most of her life, this poem was especially meaningful to me. And that’s why I want to share it with you guys too. When you live with illness, there are bound to be bad days (and nights 😦 ). In the past I wrote this message specifically for persons who are new to their diagnosis of illness. I’d like to share this beautiful poem, which holds so much truth and can be very applicable to our situations. I’ve included some of my favourite lines of the poem at the end of this post.

I’ve also included another beautiful spoken word piece by Shane Koyczan titled To This Day. This one focuses on bullying and rising above it and is absolutely worth hearing. I actually feel that this should be played in schools, if it’s not being played already.

“There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go. Be confident. Know that now is only a moment, and that if today is as bad as it gets, understand that by tomorrow, today will have ended. Be gracious. Accept each extended hand offered, to pull you back from the somewhere you cannot escape….. Despite your instinct to say “it’s alright, I’m okay” – be honest. Say how you feel without fear or guilt, without remorse or complexity… If you think for one second no one knows what you’ve been going through; be accepting of the fact that you are wrong, that the long drawn and heavy breaths of despair have at times been felt by everyone – that pain is part of the human condition and that alone makes you a legion….So be a mirror reflecting yourself back, and remembering the times when you thought all of this was too hard and you’d never make it through. Remember the times you could have pressed quit – but you hit continue….Be the weed growing through the cracks in the cement, beautiful – because it doesn’t know it’s not supposed to grow there….If you are having a good day, be considerate. A simple smile could be the first-aid kit that someone has been looking for. If you believe with absolute honesty that you are doing everything you can – do more. There will be bad days, Times when the world weighs on you for so long it leaves you looking for an easy way out. There will be moments when the drought of joy seems unending. Instances spent pretending that everything is alright when it clearly is not, check your blind spot. See that love is still there, be patient. Every nightmare has a beginning, but every bad day has an end. Ignore what others have called you. I am calling you friend…. Everyone knows pain. We are not meant to carry it forever. We were never meant to hold it so closely, so be certain in the belief that what pain belongs to now will belong soon to then. That when someone asks you how was your day, realize that for some of us – it’s the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now – let go.”
“Instructions For A Bad Day,” written by Shane Koyczan.

I hope you guys enjoy these poems as much as I do. Feel free to leave a comment about them. Thanks guys!
Enjoy your summer!
❤ Ms. Rainbow


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“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!
❤ 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).

cando

Image source here. Photo by Nicole Lavelle.

It can take years to make sense of this situation and to fully get used to the fact that arthritis has become a life-long partner.

  • Give it time, and most importantly, try to adopt an attitude of trying, no matter what happens.
  • Be wary of spending too much time on the Internet reading about arthritis, while life goes on around you. Being informed and educated is great, but while you treat your condition, aim to strike a balance. You have to enjoy life too, not so?
  • Even though you’re in pain, still try to do activities that bring happiness into your life. Make sure you have something wonderful to look forward to every day, even if that means simply planning to sit down in your garden with a glass of your favourite ice cream for a half hour.
  • Surround yourself with caring people who love you and will uplift you.
  • Do not be afraid to try new experiences because you have an illness. Although there are instances where we will clearly need assistance or may experience physical limitations, try not to use your illness as an excuse not to try. How will we ever know whether we can do something unless we try, right?
  • Train yourself to think creatively. If you can no longer do certain things because of pain or joint damage, consider visiting an occupational therapist who may be able to suggest a tool or gadget to help your mobility.
  • Do not be afraid of having to use a wheelchair, a walker or crutches. If you limp while you walk, don’t let self-consciousness stop you from going out in public. I know that this is all easier said than done, but have confidence in yourself and be aware of how much you have to contribute in this world.
  • As scary as it all seems, make the conscious effort to keep pushing ahead. Your biggest friend in this whole situation is going to be yourself. Above all else, we have to try and we have to work hard to achieve what we truly want out of our lives. There may be loads of challenges along the way (and there will likely be negative persons as well), but we must train ourselves to remain focused on what we are doing.

There’s a song which does a good job of kicking you in your butt if you find yourself stuck and not progressing in life: Dare you to Move by Switchfoot.

ARE YOU CURRENTLY STRUGGLING WITH YOUR ARTHRITIS? There is no need to feel alone in this situation. Check out Arthritis Care’s Helpline here, where you can email or even phone in to speak to someone confidentially about whatever arthritis-related challenges you may need support with. They even have specific resources for youths here. Instead of dealing with this on your own, reach out to them.

Readers, do you have any advice for newly-diagnosed patients? Are you still struggling to accept your illness? Feel free to leave a comment below so that we can all learn and share together. Thanks!

All the best,
❤ Ms. Rainbow

 

Recommended reading:

 

 

 


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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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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


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“Share the pain” website by the Arthritis Society

Hello everyone! Today I came across a great website which I wanted to share with all of you. It’s called ThePain.ca and it was created by the Arthritis Society (of Canada). Their new campaign encourages persons living with arthritis to share their stories and to speak up about how their lives have been impacted by arthritis. I read through quite a few stories, particularly the Juvenile Arthritis stories (you can filter the stories according to condition). It always surprises me how much I can relate to persons who live so far away from me and who have grown up with completely different backgrounds. I was so touched by many of these stories and I admire everyone who has contributed and “shared their pain” on the site. I guess in our own corners of the world, pain can strangely unite persons, as we all fight the same challenges every day.

There is a lot of honesty on this site, as the stories are written by real persons going through the same trials which you and I face on a daily basis. If you are newly-diagnosed, I think you’ll find this tool especially helpful. It’s always great to know that we are not alone. 😉

Sending you all gentle hugs,
Ms. Rainbow


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Riding the choppy waves of Juvenile Arthritis

Hi everyone! Today’s post has been inspired by this month’s Patient For A Month theme “What do you do when you can’t keep up?” which is being hosted by Leslie at Getting Closer To Myself.

When we live with a chronic disease, there are going to be rough days – days which are literally going to bring us to our knees. Whether you are newly diagnosed with autoimmune arthritis, or you are years into this journey, you probably know these days I’m talking about, right? Since these rough days are going to be a recurrent part of our lives, how do we deal with them? How do we keep it together and not allow ourselves to crumble under the stress of being the head manager of our unpredictable arthritis-infused lives?

I love the ocean, so let’s use that as an analogy for living with (J)RA. There are days when the waves are gentle and we are able to manage fine. Heck, we can even manage well. Despite the pains, we excel in school or our careers. We take care of and love our families. We climb mountains, we travel with our wheelchairs, we dance the nights away even when our joints creak with every movement. We think to ourselves, “Ha! Take that RA! I am your Master and you will never take me down. Never ever!” We have everything under control and we’re able to go out and have fun. We don’t even think about RA because we are so busy enjoying life and every beautiful thing it has to offer.

Then there are days when the waters get choppy and really, really rough. As many of you know, RA likes to flare unexpectedly. You can be fine one day and then find your entire body encapsulated by pain on the next. Also, when you have (J)RA and a wonky immune system, sickness tends to affect you worse than it would a healthy person. If I get the flu or a cold or a stomach bug, my JRA likes to flare up also. Sometimes the side effects of the medications can make us sick too. How many of us have spent days (and nights) throwing up due to the side effects of RA medications, or the after-effects of surgical procedures? Not fun, right?

But you know what? With time and experience we learn to manage these waters too. We learn to ride these waves, to swim or to tread water – even if we have never done it before. We do whatever we can to keep afloat.

But then comes the reality of living life with a chronic disease: illness doesn’t operate in a vacuum. In addition to managing sickness, we still have to live our lives. If you live with autoimmune arthritis, then you know that some days it takes every ounce of willpower and strength just to force yourself out of bed and get through that day. What happens when we’re already mentally and physically drained from fighting those (J)RA waves and life decides to send a tidal wave at us as well? What happens when “real life” intervenes and we have new challenges to face with school, exams, bills, relationships and work? How do we stay afloat then? How do we find a balance between managing this 24 hour/day illness with our regular life goals and daily tasks?

surferIn the past 22 years of growing up with JRA, I’ve found myself in countless situations where life and JRA overlapped and pushed me to extreme limits. And I know I’ll have many, many more situations to face in the future. In the past I’ve written about how my two knees decided to swell up and render me almost immobile just as I’d moved away on my own to start college. I remember hobbling and smiling a lot through tears, just so that classmates wouldn’t know anything was wrong (I don’t know why so many of us hide our pains, but I doubt we’re going to stop anytime soon :(). It took well over a month for those knees to return to normal, but in that month I learned to be a stronger person than I had ever been. I realized that I could manage completely independently even through a flare.

And I think that that’s what keeps me from going insane during those overwhelming flare periods, the fact that I’ve been through it already and made it through. Flares are painful, but once you realize the strength of your own body and your own capacity to achieve even with pain, your sphere of possibility suddenly becomes larger, even when you find yourself in new situations where you have no idea what’s going to happen.

The reality is that some days we may find ourselves bobbing up and down while trying to figure out the RA waves and life’s tidal waves. That’s fine. There is no guidebook and we are allowed to take as much time as we need to figure it all out. We may have superhero powers, but we are still human. Some days we may cry. Some days we may feel like we cannot endure anymore and we have no idea what’s going to happen. During those days I take a deep breath and remind myself of how far I have come with this illness.

In your most difficult moments, try to remember that your bad days are just that: bad days in a lifetime of days. A rough day does not dictate the course of the rest of your life. The flare will not last forever. Eventually those days pass and we realize that we actually were able to withstand that rough patch. We realize we are stronger than we knew. And that strength makes us feel a little more confident for the next time life sends a tidal wave in our direction. Cry if you need to get it out of your system, but don’t allow yourself to dwell on negative thoughts. Think about the support you have around you and the wonderful things you have going for you in your life.

If you find that you’re waiting and your situation isn’t improving, make a promise to yourself to make your life better. Do something – whether it means seeking better treatment,  making time to relax or going out and doing healthy activities which make you feel happy. I have outlined some coping strategies in my previous post How to keep (J)RA from taking over your life. Learning to cope isn’t an easy process, but time and experience does help us to find what works for each of us. Let’s train ourselves to ride those rough waves.

This is a great topic and I look forward to reading the other posts in this series. Feel free to share your comments as well.

Thanks, and hang in there friends!
Love,
Ms. Rainbow