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).

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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 Fault In Our Stars (Spoiler Alert!)

Hi everyone! I know I’ve been gone for some time. Life, as well as arthritis, has been keeping me incredibly busy, but I am plodding along! Today I wanted to discuss a book which has become very popular lately due to the fact that it will be appearing in movie format next month – The Fault In Our Stars, by John Green.

I will try to write this post without giving away too much of the plot ;). The book is basically about two teenagers who are living with cancer and their experiences together. The ending is actually a little predictable, but I still really enjoyed this story.

Why? Because the story is so honest and there are no sugar-coatings. The blunt, honest questions of the main characters Hazel and Augustus are questions I’m willing to bet almost every chronically-ill youth has asked himself/herself at some point. When the characters become frustrated or feel pain, we can feel their pain too – because their stories are our stories too. Because the story is told from teen Hazel’s point of view, the tone is very much that of a young person, and I found myself laughing and smiling at so many of her observations, because I’ve had those same thoughts myself many a time.

There comes a point with illness when we get very used to our situations. We get used to the pain, the needles, the hours in waiting rooms, the stares from strangers, the well-intentioned but sometimes hurtful words from persons who don’t understand illness and the “sick” lifestyle. And eventually, many of us start making jokes about it – because laughing about it is more fun than crying about it, right? Our main characters have reached this point of comfort where they are able to poke fun at their respective situations. However, that doesn’t mean that they are invincible and we get honest insights into their thoughts and struggles and pains when life becomes too overwhelming.

One of the repeated lines in the book is that “The world is not a wish-granting factory.” If you are living with illness, I’m sure that’s a concept you’ve realized all too well. There are so many great themes in this book, and depending on our own experiences, we will all take away something different from it.

If you are a chronically-ill person, I definitely recommend taking the time to read this book. But do get the tissues ready, tears will be shed! Consider yourself warned! 😉 If you’re read “The Fault In Our Stars,” let me know what you thought about it in the comments below. Thanks!

Lots and lots of 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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“Share the pain” website by the Arthritis Society

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

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

Sending you all gentle hugs,
Ms. Rainbow


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Arthritis and college support

Hi everyone! Some of you may recall that I recently shared a few tips about going away to college when you have Juvenile Arthritis. (Read the first part here and the second part here.) In keeping with that topic, I wanted to share a couple relevant links today.

The first site is the Youth Health Talk website, which I have mentioned previously on this site. There is a section specifically on going to school and college (click here to view), which you may find useful. There are quite a few videos of young persons with arthritis discussing their experiences on this site, so check out what they have to say. [http://www.youthhealthtalk.org/young_people_with_arthritis/Topic/4357]

I also found the following articles useful so check them out if you need more support:

-“Help Your Child With JA Get the Most Out of College “- http://www.kidsgetarthritistoo.org/living-with-ja/daily-life/school-success/choose-a-college.php
-“JA Scholarships: – http://www.arthritis.org/missouri/juvenile-arthritis/

Take care everyone!
Ms. Rainbow


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Kids get arthritis too flash mob…keep on dancing!

Hi everyone! As we head into the weekend I wanted to share something which really made me feel great today. Some of you may be aware of the Juvenile Arthritis Conference which was held in California this month. I did not attend, but I was checking out some of the action online and found this wonderful video of JRA young adults doing a flash mob at downtown Disney!

Everyone involved did an outstanding job! 🙂 To see young persons who I know live with pain still go out there and have an amazing time made me feel truly inspired and touched. I have to admit, it made me cry!

Living with illness isn’t easy, but let’s take a note from the video and keep pushing forward and dancing through life, however we can. 😉

Have a great weekend!
❤ Ms. Rainbow


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“Art for a cure” gallery show

Hi everyone!

I wanted to let you know about a gallery show which will be put on by the givebackproject.org, especially targeted toward JRA kids. Young persons aged 3-16 are invited to submit artwork to raise awareness and funds for arthritis research. The deadline is September 1st, 2013. Since July is Juvenile Arthritis Awareness month, this is a great way to spread awareness.

I am much too old to participate in this project ;), but I hope a lot of kids and teens will enter. Art in all its forms can be quite therapeutic when you live with a condition like JRA. Visuals are also sometimes so amazing at telling a story in a way which words never can. So why not give it a shot? 😉

Full details of the project can be found here: http://givebackproject.org/#/art-for-a-cure/4577770521

Good luck and have a wonderful weekend!

❤ Ms. Rainbow


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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