RArainbow

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


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

Hi everyone! How are you guys doing? Hope you are all enjoying your summers/holidays wherever you are! ūüôā 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. ūüėČ

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 ūüė¶ ). 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 ‚Äď 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 ‚Äď it’s the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now ‚Äď let go.”
“Instructions For A Bad Day,” written by Shane Koyczan.

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

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“The Fault In Our Stars” movie (spoiler alert!)

Hi everyone! I recently saw The Fault In Our Stars movie and wanted to share some thoughts on it. I am a huge fan of the book by John Green (which I wrote about here) and so I was really looking forward to this movie. And I loved it! Though they had to make some changes in the movie and omit some parts, overall the movie held on to the honesty of the book, which is really what makes the story so special.

We all know it’s a romance and we all know it’s about cancer – but the story is more realistic and deep than the typical romantic-comedy (or illness film, for that matter). Our protagonists Hazel and Gus explore so many different questions and concepts when it comes to being chronically ill, such as “oblivion” and making a mark on the world and who will remember us when we pass on. Also, although the characters all have cancer, the story does not focus on cancer itself. This is not one of those stories where the character triumphs against all odds and everyone lives happily ever after. Instead, it’s about teens who have cancer and how they spend their lives – definitely more realistic than what we’ve ever seen in the mainstream media. And though there may not be the typical “happily ever after” that we’re accustomed to seeing, there is definitely a lot of joy which they find in their lives, even with cancer.

Having had autoimmune arthritis for most of my life, I related a lot to Hazel and the other young characters faced with illness. From the very first lines of the movie, I knew exactly what Hazel meant¬†when she says, “I believe we have a choice in this world about how to tell sad stories. On the one hand, you can sugarcoat it. When nothing is too messed up that can’t be fixed by a Peter Gabriel song. I like that version as much as the next girl does. It’s just not the truth.”

When it comes to illness, I’ve realized that it is very difficult for persons (especially healthy persons) to be exposed to the reality of¬†a life of illness. The world loves winners and we love to hear stories about persons overcoming their illnesses and going into remission, about persons with prosthetic limbs becoming amazing athletes and about persons triumphing in tough situations. I won’t lie, I love those stories too (and you know I share them on this site all the time). They absolutely inspire me and give me energy and motivation to keep pushing ahead. But illness is definitely not a glamorous situation, and persons who excel have to work hard (and experience a lot of mental pain as well as physical pain) to get where they’re going. In short, it’s not easy.

One of the¬†most thought-provoking¬†lines of the film¬†uttered by Augustus Waters is, “That’s the thing about¬†pain. It demands to be felt.” I have to agree when it comes to emotional pain. We try to avoid pain and painful situations in our lives, but the reality is that sometimes the only way to get through a situation is to experience that pain and work though it, even if it means tears are going to be streaming down our face. Running from pain means it’s always there, just below the surface. Painting a smile on our faces and pretending that nothing is wrong doesn’t work out in the long run, does it? Sometimes, it’s only by facing that painful situation head on that we learn to really accept and deal with it – and this is what makes us stronger and smarter for the future.

I liked Hazel’s story because it showed the reality of living with chronic¬†illness as a young person. Yes, there are a million doctor visits and needles and pain, but there are also beautiful moments of joy and “normal” life too. They still went out and had great times together, like every other person their age. Their love and bond was extremely beautiful – but not in a sappy, puke-inducing kind of way ūüėČ . Watching them and knowing what they were both experiencing health-wise, I felt glad that they had each other to lean on. When you are sick or going through tough times¬†is really when you need love in your life (whether it is from significant others, family or friends).

I think that having arthritis made the movie more personal to me as I related to the pain of the characters and their thoughts, fears and frustrations. My heart went out to Gus as he broke down crying at the gas-station as he tried to buy a pack of cigarettes Рand hold on to a shred of normalcy and independence in his life with the cancer. If you have a chronic illness, then you can probably relate.

All in all, this movie is definitely worth watching and quite funny at times. I am extremely happy that a mainstream movie has come along starring young people with illness.¬†The movie is¬†not overly sad or over-dramatic or sappy – it’s just right. I did cry throughout most of the movie, but I think it’s because I was able to relate to Hazel’s words a lot. For those of you who don’t live with illness, did you cry as much as I did? Haha, please let me know!

Whether you have an illness or not, please let me know in the comments¬†what you thought of¬†the film, or if you are planning to go see it. Thanks guys! ūüôā

‚̧ 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! ūüėČ ) 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 K√ľbler-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 ūüėČ ). 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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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! ūüėČ

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! ūüôā

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 ūüė¶ ¬†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? ūüėČ

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. ūüėČ

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. ūüėČ 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.¬† ūüėČ

 

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

Have a wonderful holiday season everyone!
Love and best wishes,
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 Рdays 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‚Äôs 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, ‚ÄúHa! Take that RA! I am your Master and you will never take me down. Never ever!‚ÄĚ We have everything under control and we‚Äôre able to go out and have fun. We don‚Äôt 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‚Äôt 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‚Äôre 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‚Äôs 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‚Äôs 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‚Äôre 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‚Äôt an easy process, but time and experience does help us to find what works for each of us. Let‚Äôs 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


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Waking up and Juvenile Arthritis

[Image credit: Charlotte Bradley - Someecards.com]
[Image credit: Charlotte Bradley – Someecards.com]

Hi everyone ;).¬†When I first saw the Ecard above, it made me laugh. Sadly, I could relate to it all too well. Can you relate to it too?¬†If you have autoimmune arthritis, you’ll probably be familiar¬†with the experience of¬†waking up only to realize that¬†your joints are filled with stabbing pains and you can barely move :(. When I was younger, I would experience severe morning stiffness in all my joints. There were terrible days when my joints were simply locked and I was trapped and unable to get off the bed. Can you guys relate to this?¬†Nowadays my condition has calmed significantly with treatment, but morning stiffness and pain are still¬†part of life¬†for me. I often wake up feeling groggy and unrested¬†and it takes some time for my body to get going. Over the years I have developed some techniques to help me out in the morning which I want to share today. If you are battling painful mornings, hang in there friends. Please feel free to share your own techniques and coping mechanisms¬†with me as well, so we can all learn together.

1. Set your alarm early
If you wake up with severe pain in the morning, give yourself some time to relax. When I open my eyes in the morning, it’s difficult/painful to just jump off the bed as my body is often shrouded in pain. Personally, it takes me a half hour to an hour¬†to physically¬†get off the bed.¬† I know that this is common for many autoimmune arthritis patients :(. But don’t fret, we can¬†get through¬†it. Because it takes time for my joints to “thaw” and loosen up, I always set my alarm a little bit earlier than necessary. This way my body has enough time to relax and my joints get some time to loosen up. e.g. If you know you need to get off the bed by 7am, set your alarm for 6.30am so you can¬†lay in your bed and allow your body to loosen up before attempting to move.

2. Splints, braces and supports
In my last post I mentioned the value of splinting and supporting joints to reduce the discomfort of stiffness in the morning. My joints (like many RA patients)¬†have a tendency to stiffen during periods of inactivity. Sometimes just speaking on the phone for a half hour¬†causes my wrists, fingers and elbows to “freeze” in that position. Have you ever tried to “unlock” or unstretch a “frozen” joint?¬†Talk about¬†OUCH! ūüė¶¬†Splints and braces have proven extremely helpful in reducing my stiffness in the morning, as they keep my joints secured in a comfortable position.

3. Heat
Heat is often used by arthritis patients to relax stiff joints. This article from ArthritisToday.org gives some pointers on using heat to combat stiffness. I have found that heat helps loosen my joints tremendously. I sometimes use heat packs at night and find that they are actually still warm by morning, which is useful to my joints. However, if you need more heat, have someone from your family bring you a heated pack as soon as you wake up. If you live in a cold area, consider an electric blanket to help warm you up.

4. Hot bath/shower
If you have work or school, it’s a bit difficult to find time in the morning for a hot bath. I have found that a hot shower works just as well in helping to loosen my stiff joints.

5. Do light stretching/exercise/yoga when you wake up
I know that¬†you guys are going to groan for this one (do exercise while stiff and in pain?! Yeah right!), but I’ve found that doing a little stretching while in bed or during the morning period helps my joints to loosen up. Take your time and work on the areas which are problematic. Consult with your physiotherapist for exercises which are appropriate¬†to your specific situation before attempting.¬†You may find these¬†Hand-stretching Exercises from WebMD.com and Bed Exercises from ArthritisSelfManagement.com useful.

I have also found that doing regular exercise/swimming helps with my stiffness overall, so don’t forget to get as much movement as you can, whenever you can, however you can. Trust me, I know that is easier said than done ;).¬†Check out Sneaky ways to exercise with Juvenile Arthritis for some ideas.

6. Brighten that painful mood with music, a television show or a good book
As I mentioned in my last post, living with chronic pain can make us feel quite sad and frustrated at times. While the average healthy person wakes up feeling refreshed, autoimmune arthritis patients often wake up feeling tired and in pain, no matter how much sleep we’ve gotten.¬†As such, we have to find ways to keep ourselves motivated and HAPPY, even in the midst of a tough and painful situation. While relaxing in bed, put on a few of your favourite tunes to help brighten your mood and energize you for the day. If you prefer, stream a short video, play a game¬†or catch up on a little reading before you get off the bed. Take this time to laugh and be entertained and allow that positive mood to carry you into the day, even with pesky arthritis pain. ūüėČ

Okay guys. I know that mornings can be extremely tough. Many of us wake up feeling like we’ve been beaten or physically crushed during the night :(. If you’re newly diagnosed, I know that it’s a very scary and frustrating experience. Hang in there. Feel free to share your experiences with morning stiffness or ways which have helped you through the morning pain. Thanks!

All the best,
Ms. Rainbow

Further reading:


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Hope

[Image by Justin Ried ]

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

– “Vindicated,” Dashboard Confessional

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

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

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

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

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

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

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

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

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

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

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

Let’s wrap ourselves¬†in hope and keep pushing ahead dear friends. ‚̧

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

 

Wishing you all strength,

Love,
Ms. Rainbow


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Saluting Karen Baker

Today I want to highlight a¬†beautiful story¬†which I read on ArthritisToday.org. The article is titled Africa by wheelchair and is about Karen Baker‚Äôs safari experience in Africa. Click here to read it. Like you and me, Karen has Rheumatoid Arthritis which has affected her mobility and she often uses a cane and wheelchair to get around. Karen‚Äôs story really touched me and that‚Äôs why I want to share it with all of you today. There is nothing that inspires me more than seeing someone push forward and fight for their dreams even when the¬†stars aren‚Äôt perfectly aligned. Sometimes you have to work to align those stars yourself, right? Karen, you are truly a brave¬†woman and I admire your strength! ūüôā

 How many of us will choose to leave the safety and comforts of a familiar life to explore another country if we are dependent on a wheelchair? How many of us will do it on our own?

Karen did it, because it was her dream to make that journey. She encountered many challenges along the way, but she didn‚Äôt run away from them. She held her head up high and worked through them. What a strong and amazing lady ūüôā

When you have (J)RA, there is no shortcut or easy route out of the feelings of pain and sickness. We learn to just put on our game faces and go with it, even though we have no idea what’s going to happen and how things will turn out. We learn to live life with this disease piggybacking along.

Like Karen, I love travelling and learning about different cultures. As I get older I do worry about my mobility and my ability to travel independently.¬†Karen, you have shown me that I have nothing to fear. Whatever happens, we can still find a way to do the things we love. It’s not going to be easy, but you have shown us that where there’s a will, there is indeed¬†a way if you want something badly enough. Thank you for sharing your inspiring story with the world and all the best to you! ūüôā

I want to leave you all with one of my favourite quotes by Walt Disney:

“All our dreams can come true, if¬†¬†we have the courage to pursue them.”

Wishing everyone strength and courage as we keep fighting,

Ms. Rainbow