RArainbow

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


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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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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. 😉 😛

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!

Ms. Rainbow


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What Rheumatoid awareness would mean to me

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

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

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

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

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

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

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

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

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

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

kind

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

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

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

Sending gentle hugs, 😉
Ms. Rainbow


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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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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


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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! 😦 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. 😉

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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The incredible Jeffrey Gottfurcht

Hi everyone!

Today I want to share a story which some of you may or may not know about, since it happened over two years ago. On May 14th, 2011, Jeffrey Gottfurcht became the first person with Rheumatoid Arthritis to reach the peak of Mount Everest, the world’s highest mountain. Amazing, right? You can read more about Jeffrey’s inspiring story in this article from ABC News.

everestFor many of us, Juvenile Rheumatoid Arthritis and other forms of autoimmune arthritis have reduced our mobility due to joint damage and the presence of pain. Yet, we’re still going. We’re still walking with our swollen joints, our limps, our canes and our crutches. We’re still dancing, climbing mountains and we’re still visiting Africa in our wheelchairs. We’re still living our lives, even with the pain.

Of course, there are days when flares make moving impossible – but we have to try to not let those days get us down. We are going to have so many of those days and we have to learn to deal with them. We can’t let them break us – so make sure you don’t let them break you. Even though I have had JRA for so long and have tried so many treatments (and am still trying treatments…) there are still days when I flare and my entire body feels it’s been broken at every joint. During these flares I wonder how I’m going to accomplish anything if I’m in so much pain. It’s during these times I remind myself to breathe and to look at how far I have come with this illness. I put on some music, read a book or do work – anything to distract myself from the pain.

Readers, how do you deal with flares?

If you’re newly-diagnosed or flaring with autoimmune arthritis, it may suddenly feel like your world has gone insane and that many of your life dreams are no longer possible. Hang in there, friends. Persons like Jeffrey Gottfurcht show us that this does not have to be the case. If we fight through the tough times and keep our heads up, we usually make it. We just have to make ourselves strong and keep going.

After being diagnosed with Rheumatoid Arthritis, Jeffrey founded the incredible Jeffrey Gottfurcht Children’s Arthritis Foundation, where children with Juvenile Arthritis may apply for wishes. Parents and younger patients, make sure you check it out.

In the article, Jeffrey says, “My ultimate message is that everybody has a Mt. Everest in their life…and no matter what condition you have, you can still go out and try things and live a life full of quality.”

Great advice to think about today. 🙂

Readers, how do you deal with flare days? Leave your suggestions or advice for others in the comments below – thanks!
Hope you are all enjoying your summers!
Ms. Rainbow

[Image by pixabay.com]


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July is Juvenile Arthritis Awareness month!

Sometimes life don’t go the way you planned
And we all have days when we just don’t understand
Searching for meaning, it’s not always easy
But your story’s not over, it’s still being told
Your sunrise is coming brighter than gold
You were young, you were free
And you dared to believe
You could be the girl
Who could change the world
Then your life took a turn
And you fell, and it hurt
But you’re still that girl
And you’re gonna change this world.

Still that girl – Britt Nicole

Hi everyone!

July has been designated Juvenile Arthritis Awareness month so I want to dedicate this post especially to all the amazing young people who live with autoimmune arthritis all over the world. For more information on Juvenile Arthritis, click here. I, along with so many of the readers of this site, was diagnosed with Juvenile Rheumatoid Arthritis/Juvenile Idiopathic Arthritis as a child, at age 7. I am now 28.

Over twenty years have passed since I was diagnosed. The strange part is that even with so many advances in kgatmedicine and technology, most persons I meet are still completely unfamiliar with this condition and think I take Panadol. (How great it’d be if that’s all we needed, right?!)When you get a chronic illness as a child, it’s almost like you enter a secret world which few people know about and won’t know about until they get a lot older – that of living with pain and sickness and the accompanying twists and turns. But we do adapt and we learn how to live life as best as we can, and I salute all of us for it.

If you have had Juvenile Arthritis for some time, then you are a pro at handling pain, blood tests, injections, infusions, pills and the nasty side-effects. Some of us have had joint surgeries and know how draining and grueling that process can be, from the pain of surgery to the tedious, painful physical therapy afterward. Most of us have been half-naked/totally naked in front of our medical teams…that’s sure fun, right? Haha. 😛 It all takes a lot of guts. That’s something a lot of grown adults have never experienced, do you know that?

So if someone ever tries to put you down, I want you to realize how amazing you are. Truly. You are TOUGH. Despite the trials we have to endure with arthritis and in the world, I want us all to remember our strength and always know how much we’re worth. Don’t ever let anyone’s lack of awareness make you feel bad. There are going to be numerous times when we feel alone in this situation, but let’s keep our heads up, keep strong and keep doing whatever we have to do in our lives.

Illness does not define a person and I want to say that it’s OKAY to have arthritis or any illness. We are still beautiful ladies and young men and we are still strong and capable of doing anything we want in life. We just have to keep fighting for what we want. Even with arthritis, we are all trying our best and accomplishing amazing things. We are all fighting. On the days when I feel weak, I think about all of you out there who are fighting for your happiness despite this illness, and it makes me fight too. I think about the kindness and compassion that is shared among the arthritis community, especially by young persons who want to make sure other young persons never feel alone, and it warms my heart.

You are all SUPER TROOPER FIGHTERS. 🙂

To all the beautiful youths who fight illness, who work through pain and press on, keep fighting and know that you are all superheroes to me. ❤

Love,
Ms. Rainbow


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Arms were made for hugging, hands for holding…

[Disclaimer: I was not compensated to do this post. Also, I am not a doctor and I have no experience with the mentioned drug. If you are considering trying this drug, please discuss with your doctor and ensure that you obtain official product and safety information. Thank you.]

Hi everyone! I don’t usually relate to ads for arthritis drugs (since they never show young persons), but today I want to speak about a commercial which touched me the first time I saw it. It is for the new Rheumatoid Arthritis drug, Xeljanz, and you can view the ad below:

The spot starts off with the narrator saying “Arms were made for hugging. Hands, for holding. Feet, kicking…better things than the joint pain and swelling of moderate to severe Rheumatoid Arthritis…” I remember the first time I saw this ad on television. Even before I knew it was an ad for an RA drug, those words and images of joints “in real life” resonated with me. If you’ve had autoimmune arthritis for some time, then you know how meaningful a hug can be on a painful day. If you have a special guy to hold your hand, somehow the pain lessens and arthritis takes a backseat as life in all its beauty takes over. Sometimes just playing with your puppy can make the day so much brighter.

I’ve always found it amazing that our arthritis-affected joints are capable of so much. Most of us know what it’s like to have to walk on a swollen ankle or write an exam with painful wrists. If we are diagnosed during childhood, then our affected hands, feet, hips etc. are present during every stage of life onward. From playing at school, hugging friends and family, to dating, first-kisses and hand-holding, to learning to drive, to jobs and marriage, our joints are right there with us, pain or no pain. I love watching the photos from the Show Us Your Hands project, because every picture tells such a beautiful story of strength, hope, determination for life, creativity, style and very often, love.

I agree with the first lines of the ad: our joints were meant for more than feeling pain and stiffness. There is more to life than arthritis and we all deserve amazing and full lives. So even with the pain, let’s freely give our (gentle) hugs and hold hands with our loved ones when we can.

Hope you’re all enjoying your summers, 🙂

Hugs! 😉
Ms. Rainbow


4 Comments

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. 😉

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. 😉

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