RArainbow

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


5 Comments

“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 😉 . 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 – and 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! 🙂

❤ Ms. Rainbow.

 

Advertisements


Leave a comment

“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


5 Comments

Sneaky ways to exercise with Juvenile Rheumatoid Arthritis

Once you’re diagnosed with Juvenile Rheumatoid Arthritis or Rheumatoid Arthritis, it’s likely that you will start doing physiotherapy sessions to keep you mobile. As a child I remember how I never looked forward to physiotherapy time. It was such a painful process! My joints were swollen and stiff and the last thing I wanted to do was move them. As an adult, I finally understand how important it is to exercise when we have Rheumatoid Arthritis. Since our joints are experiencing inflammation, we need to strengthen our muscles and bones so that they can help us out when our joints aren’t doing too well. Exercise is also important to reduce deformity and fusion in joints. Exercising when you’re flaring sure isn’t easy, so on those tough days I just do what I can. If I muster up the motivation to drag myself to the pool on these days, I have found find that swimming helps my joints to loosen up.

Each of us has been affected by (J)RA differently, so it would be best to go to a physiotherapist and ask for assistance in developing an exercise routine which will be tailored to our specific body. If our joints are damaged, certain exercises may be too stressful for them (and can cause further damage!). However, I have included some links to exercises you can try at the bottom of this post if you need some inspiration. If you are going to attempt classes, inform your instructor about your (J)RA and do what you can manage.

Now, apparently we’re supposed to be doing our exercises on a daily basis :shock:. But as you all know, when you have a lifetime of JRA, taking an hour or two to do physiotherapy doesn’t always happen every day. Not when young ladies have exams to study for, jobs to do, dates to go on or meals to cook (oh, and RA to manage too)! But we must at least try, right? The more we incorporate movement into our routines, the better for us.

Here are some ideas to keep mobile:

1. Exercise while watching television or listening to music. Try to do the exercises you have learned at physiotherapy while you’re watching your favourite television shows. Instead of lying on the couch, lie on the floor and do some stretches so you don’t get too stiff staying in one position.

2. Use your travel time! If you commute using the bus or subway (or have to take a 6-hour flight), use the time to do some wrist and finger exercises. Stretch from time to time to reduce stiffness.

pool3. Swimming and water exercises. Try to swim at the local pool when you get a free evening. If you’re in school, then make use of the pool there. Hey, you might meet some nice guys and girls while you’re there, which will probably motivate you to keep going. I have to say that swimming helps my stiffness a lot and is my favourite physical activity to do. Also, we don’t put a lot of pressure on our joints when we swim, so for me it’s less painful than doing regular floor exercises. In this article from HealthCentral.com, Christine Miller explores the benefits of swimming and doing water exercises with Rheumatoid Arthritis.

4. Have fun at the beach. If you’re near a beach, turn it into a family outing and get some exercise at the same time. Try doing sports (frisbee, running, football, cricket, volleyball etc.) or take a dip in the water to help loosen your joints. If you’re feeling low-energy that day, try sitting on the sand and building sand castles with your friends and loved ones – it’s a great way to get those wrists and finger joints moving.

5. Rub-a-dub-dub…exercise in the tub. Fill up the bathtub with warm water and do your exercises in there. Add bubble bath to make it more exciting and fun.

6. Dance like nobody’s watching! Turn on the music and do some dancing in the living room with your friends or family…or dog! 😉dance

7.  Work out with the kiddies. If you have kids, do the moves to the Hokey Pokey, If you’re happy and you know it and Head and shoulders with them. Even if you don’t have kids, you can still try this one – just be careful who sees you. 😉

8. Go out and dance! Dress up and go out dancing with your friends. There is no pressure here: you get to move at your own pace, have some fun with your friends and get some exercise – what’s better than that?

9. Boy-band dance moves, RA style. If you’re in my age-group then I have no doubt that you have already tried dancing to the Backstreet Boys’ Everybody music video or *NSYNC’s Bye Bye Bye ;). So turn up the music with your friends and show off those choreographed dance moves. 😉

10. Aerobics classes. I really enjoy doing aerobics and find it to be a good way to keep my body mobile. If you cannot do every single move, just do what you can.

11. Take a dance class. When I was younger I did modern dancing and it really helped me because there was a lot of stretching involved. But there are so many types of dance to choose from: ballroom, hip-hop, bhangra, jazz, latin etc. Take your pick!

12. Yoga. Yoga and stretching can be very beneficial for our stiff bodies, although I admit I cannot do every yoga position! Check out this WebMD video which shows some yoga poses you can try with Rheumatoid Arthritis.

13. Zumba classes. Zumba seems to be a huge craze right now. In college I tried Zumba classes and absolutely loved them! You’re pretty much dancing while exercising. It can be a bit intense, so be careful if your joints are very damaged. Do what you can and move at a pace that suits you.

14. Take a walk around your neighbourhood. If all these classes seem too high-energy for you, then a leisurely walk to your park may be just the thing you need to clear your head after a busy day.

15. Learn the dance moves from the Gangnam Style video. Talk about an intense work out!

If you have (J)RA, then I know you have had a few hundred people lecture you on doing exercises by now. But you know what? I’ve found that it genuinely helps me feel better to keep my body active. I know that on some days just walking is a huge task, so do whatever you can. I always think a little exercise a day is better than none at all. Move at your own pace – you know your body best. I’ve included some links to suggested RA exercises below in case you are feeling extra ambitious today. 😉

-Hand Exercises for Rheumatoid Arthritis
http://www.webmd.com/rheumatoid-arthritis/features/hand-exercises-rheumatoid-arthritis
-Joint-friendly fitness routines (picture slide show)
http://www.webmd.com/rheumatoid-arthritis/ss/slideshow-ra-exercises
-Rheumatoid Arthritis and exercise
http://www.webmd.com/rheumatoid-arthritis/guide/exercise-and-rheumatoid-arthritis

 

Readers, what is your favourite way to keep mobile with Rheumatoid Arthritis?  Feel free to share your ideas in the comments so we can all learn together.

 

Happy exercising!

Ms. Rainbow

[Images by pixabay.com]


4 Comments

Loving yourself with (Juvenile) Rheumatoid Arthritis

girlAlthough (Juvenile) Rheumatoid Arthritis causes internal pain and damage, it can also affect our bodies physically, which can in turn affect how we feel about our bodies as young women.  Apart from causing us to limp and have to use braces, orthopaedic shoes, walking aids or wheelchairs, JRA can destroy joint tissue and affect the growth of our bones, especially when it affects young children whose bodies are still growing. Gaining muscle mass may be difficult when joints are painful and damaged. Scars remain where we’ve had replacements or joint surgery. In addition, medications can have side effects which are seen physically. Methotrexate is known to cause hair to fall out, while corticosteroids are infamous for causing rapid weight gain and a “moon face” and can lead to early osteoporosis in the long-term.

But you know what? JRA or no JRA, we deserve to be loved by ourselves. Do you agree?

JRA (and heavy usage of corticosteroids) has made me a super petite woman. My joints all look a bit wonky and creak-creak-creak like nobody’s business. Growing up, many people would make fun of my body, as I’m sure many of you reading this have experienced yourselves. It hurt and I cried many nights into my pillow over it, but you know what? I still liked my body. I liked my body because I knew for a fact that it was incredibly strong to withstand all that pain. My joints were sick and they were mine and I had to take care of them and love them, just as I took care of my Barbie dolls when their arms and legs broke off and I had to tape them back together. I knew my body was a little different, but it was okay. I was fighting bigger battles and I knew I had to stay focused and take care of myself. In learning to accept JRA into my life, I also learned to let go of other people’s negativity and my self-consciousness and to accept how it was affecting my body.

As I got older, my situation got better. I continued being myself and doing whatever I was passionate about. At college I joined clubs, I danced the nights away with friends and I enjoyed my classes. I was studying English at the time and I was always surprised when guys would lure me into discussions about Shakespeare, even if it was 3am and we were at a party. They respected my opinions, they liked my jokes and they liked me, tiny JRA body and all. They didn’t seem to notice my crooked joints and swollen fingers and super-creaky elbows. Even if they did, they never mentioned it – because in the big picture I realized those things didn’t matter.

I also realized that whether guys found me attractive or not wasn’t something I should worry about. Truly, the opinion which mattered the most was my own. If you love yourself you feel happy, comfortable and at peace and no one can take that away from you. If someone doesn’t find you attractive, so be it. If someone does find you attractive, it’s flattering but that shouldn’t be the validation you need to feel good about your body. Do you agree? Even if you think no one sees beauty in your body, I want you to see the beauty in your body. See the beauty in your body which has experienced hard times but is still trooping along.

You might think that the marks of (J)RA detract from your beauty, but you know what I see when I read through arthritis blogs? I see truly beautiful and strong women who are fighting for their dreams with the cards they’ve been dealt. Elizabeth of The Girl With Arthritis wrote this wonderful piece where she referred to all the physical marks of auto-immune arthritis as our “battle scars.” I couldn’t have put it better myself. When you have JRA you’re fighting a battle every day and sometimes the effects of that battle show on your body. There is absolutely nothing to be ashamed of – if anything, your battle scars show what your body has endured. They are beautiful. So wear them proudly and with your head held high.

I know that when we turn on the television and look at magazines we see image after image of perfectly toned women with sculpted arms and legs – and healthy joints. We hear our friends obsessing about how they’ll have the perfect body once they keep working out. For us, it may seem like we never had a shot at that “perfect” body because of JRA. But you know what? Your body is perfect just the way it is at this very moment – because it’s yours.

Let’s love ourselves ladies. Our bodies are going through a lot – let’s be kind to them and love them, exactly the way they are.

Love your hands, love your joints, love your face even when you’re taking corticosteroids, love your uneven bones, love your hair even when you can’t brush it and love your scars. Love your reliable wheelchair which takes you everywhere you want to go. Love your unique personality, love your strength, love your talents and love your quirks. Before you go seeking love from other persons, first learn to love yourself. You deserve to be loved by yourself. Don’t you think so?

Loving ourselves takes time and is a process. There are still days when I look at my bones and joints and realize how physically fragile they are. It scares me but I try to love them anyway – because they deserve to be loved. If you don’t love yourself already, I want you to start trying. Start learning to love every single thing which makes you who you are.

As women with (J)RA, I think the most important “I love you” we’ll ever say in life is the one we say to ourselves.

So even if it takes time, let’s make sure we learn to say it. 😉

 

Wishing you all the best, pretty ladies 🙂

Ms. Rainbow

[Image source: graphicsfairy.blogspot.com]