RArainbow

A resource blog for young women living with Arthritis


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Breaking news: Kids and teens get arthritis too

The following video was prepared by the 16 to 18 year old group at the 2011 Juvenile Arthritis Conference in Washington, DC:

The first time I watched this video, I cried. I’m older than many of those teens, but I still relate to every word they said, having shared many of their experiences growing up. Watching this video made me want to reach out and hug every one of these strong and inspiring teens! 🙂 I wish that this video could be shown on television, as it does an amazing job of giving insight into Juvenile Rheumatoid Arthritis and shows that pain, sickness and joint damage are not limited to older persons. It also does a great job of showing that even though you might have a chronic and life-long condition, it’s not the end of the world and you can still enjoy your life.

I remember what it was like growing up with JRA and not having many persons understand what I was going through. Eventually I stopped speaking about it, because I hated persons telling me that I had an old person’s disease (which could be cured with painkillers), or worse, having persons think I was pretending to be sick to get attention. I preferred to push my body and walk with pain, or smile through tears when someone shook my hand a little too roughly, rather than explain to someone that I had arthritis.

For a long time I felt that me having arthritis was the problem. I didn’t realize that there were people who would accept me and understand that I was different, and that it was just a matter of people adjusting to me. I was too young to understand that the world was made up of all types of persons, and that “sick” persons belonged just as much as healthy persons. As I got older and understood my condition, I learned how to explain myself better to my peers. As they got to know me, they accepted me just the way I was and offered assistance when they could. JRA was a tiny part of my package. My true friends liked me for my personality, for my jokes and for my friendship.

If you’re a kid or teen and you’re reading this, please know that you are perfect just the way you are. JRA may have changed your body somewhat, but you are still the same person you were before JRA. Sickness does not define a person and you are so much more than your JRA. You may have some additional battles to fight, but you can do it, and you can do it well. It’s a learning process for all of us, as we continue to understand our disease and learn how to handle it. With every step and every fall, we become stronger. This disease still teaches me so much.

I love that the teens in this video are able to verbalize their feelings about their condition so well and that they have so much support from one other. This is a great video to share with friends and family to help them understand that arthritis isn’t just for old persons.

The best part of the video was when one of the young ladies said, “We’re all still just kids.” No matter how much pain we’re in, we must all still try to enjoy life and everything it has to offer. We might be spending a good portion of time in hospitals, taking pills, getting injections, infusions, doing physical therapy and feeling like we are indeed 90 years old….but don’t forget we still have our lives to live, and we all still deserve to have fun.

On that note, I leave you with a song that always picks me up. 😉

All the best,

Ms. Rainbow

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The little China Girl from “Oz: The great and powerful” and how she relates to JRA

I recently saw the movie “Oz: The great and powerful.” I love fantasy stories with happy endings so I really enjoyed the film, even though it wasn’t as grand as I was expecting it to be. James Franco is also very easy on the eyes, so that’s an incentive to watch too 😉

China Girl, Oz and the monkey

China Girl, Oz and the monkey

[Image source]

 

Without giving away too much of the movie, I wanted to discuss one of the characters, the beautiful little China Girl (voiced by Joey King) and how she made me think of Juvenile Rheumatoid Arthritis. China Girl appears in the fantasy land of Oz. She is reminiscent of another character, a young girl in a wheelchair (played by Joey King) who makes her appearance before the con-man/carnival magician Oz is whisked away into the land of Oz. There is a moment when the young girl in the wheelchair asks Oz to make her walk again, but he is unable to do so because his magic is not real. (I cried. Not so much because of the movie, but because I know this is the wish of so many kids in real life. 😦 )

Later in the movie Oz meets China Girl, a young doll made out of china pieces, whose legs have been broken off. She is crying and wants to walk again. Oz helps her by gluing her legs back together. He guides her to her feet and she wobbles a bit before she is finally able to walk again. (I cried during that part too.)

It’s fitting that China Girl is fragile on the outside but has a strong will and a feisty personality. She is a faithful companion to Oz and is helpful and brave. More significantly, her bright, innocent disposition softens Oz’s selfish nature and brings out his tender side as he feels the need to protect her at times.

JRA tends to make our bodies like that of the little China Girl. If someone shakes our hands too firmly or we somehow get smacked on our joints, we can experience a lot of pain. If we suffer from early osteoporosis, our bones become extra-fragile and we have to be careful when playing sports or engaging in intense physical activities in case we fracture them.

I have to admit that I dislike when people tell me I’m fragile looking, because it implies that I am weak. But I guess they could say worse things, right? Like China Girl, I’ve learned how to be strong on the inside and how to enjoy my life despite having a weakened and delicate body. In reading other blogs of (J)RA patients, I see parts of the little China Girl’s personality peeking through. In spite of painful bodies, I see strength, bravery, determination, wisdom and truly beautiful people.

Keep it up, and stay strong like dear China Girl,

Ms. Rainbow


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How to care for your hair when you have (J)RA

Mr. Llama with amazing hair

Mr. Llama with amazing hair

Part of growing up as a young woman is having fun with your appearance and experimenting with your style, particularly your hair. However, when you have Juvenile Rheumatoid Arthritis or Rheumatoid Arthritis, focusing on your appearance can be painful and tedious. If you’re like me and have painful, weak wrists and fingers, taking proper care of your hair can become difficult. Today I’m going to share some RA-friendly tips on managing your hair, so that you can be as stylish as cute Mr. Llama in the picture. 😉

1.Eat properly and get the right nutrition
With our wacky immune systems, we need all the support we can get. Proper nutrition is necessary not just for healthy growth of hair, but for our overall well-beings and health. Make an effort to eat more balanced meals. This article from WebMD.com gives some recommendations for foods which improve the condition of our hair. I know that many RA patients are on strict diets, so please consult with a doctor before making changes to your diet.

2. Hair length
If your wrists and fingers are too painful to allow you to comb your hair, it makes sense to get a shorter haircut which will be easier to manage. You’ll have less shampooing and less brushing to do. Short hair has become very fashionable these days (just look at Rihanna), so you have a range of trendy styles to choose from. Check out short-haircut.com for some very fun and edgy styles for short hair.

3. Apple cider vinegar
It sounds crazy to put apple cider vinegar in your hair, but I’ve found it gets my hair really clean. After you shampoo, give your hair a rinse with equal parts of water and apple cider vinegar. There’s no need to condition afterwards, but I still do it to make sure that vinegar smell gets out! Apart from keeping your hair shiny and soft, apple cider vinegar does an amazing job of removing build up from your hair and getting it totally clean. This is perfect for persons like me who have difficulty shampooing their hair properly. You can read more about the benefits of apple cider vinegar in this article from HuffingtonPost.com.

4. Find the right brush for your hands
With fused wrists, I sometimes find it difficult to brush my hair properly. For me, I’ve found that round brushes with rubber handles work well, as I’m able to grip them better. Search around in your beauty store for a brush that is comfortable for you.

5. Knots and tangles
If your hair is really thick, using a detangling product or hair serum can help soften the hair and make brushing easier. Hot oil treatments can also help soften hair. I sometimes apply coconut oil to my hair before shampooing and let it sit for about 15 minutes to an hour. It helps with the tangles and makes brushing easier (and is supposed to make hair healthier overall).

6. Chemical straightening
Since my hair is naturally wavy, I decided one time to get it chemically straightened at the salon. I loved the results because I had no need to brush my hair! Although I prefer the versatility of wavy hair, doing the chemical straightening really helped me out as I did not have to struggle with styling tools or hairbrushes in the mornings. If you are going to do chemical treatments to your hair, please get it done by a reputable hair-dresser as the chemicals used are extremely strong (and toxic). If you are taking strong medications, discuss with your doctor whether chemical hair treatments would be suitable for you. I know that Methotrexate has the side effect of causing hair to fall out, so I would be a bit wary of putting chemicals in my hair if I’m already experiencing hair loss. Again, discuss with your doctor.

7.Leave-in conditioner
Most women style their hair with blow-dryers, flat irons and curling irons. But there are days when I can’t do this. I usually just apply a leave-in conditioner after washing my hair, which helps keep it smooth and frizz-free.

8. Air-dry instead of blow-dry
Blow dryers can be painful to manage, so skip them altogether and let your hair air-dry.

9. Enjoy your hair, just like Mr. Llama
No matter what hair looks like, whether it’s thinning or dropping due to the side-effects of medication, or whether it’s magnificent like a lion’s mane, enjoy your hair. Don’t beat yourself up if you’re having trouble styling your hair like your peers. Enjoy what you’ve got and rock it out like Mr. Llama 😉

Check out the links below for more information on managing and styling hair:

Hair care with RA: http://midatlanticarthritis.wordpress.com/2012/02/22/arthritis-hair-we-go-tips-for-hair-care-with-rheumatic-illness-or-chronic-pain
No-heat hairstyles: http://tlc.howstuffworks.com/style/no-heat-hairstlyes.htm

 

Wishing you all great hair days! :mrgreen:

Ms. Rainbow

Image provided by pixabay.com.


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What does Rheumatoid Arthritis feel like?

I’ve had RA for so long now that I’ve had to develop a coping technique of mentally acknowledging but ignoring the pain. I rarely stop to actively think about the pain unless it becomes unbearable. I’ve read blogs by other individuals with RA, who try to describe what their pains feel like. For the most part I’m able to relate to them, which I think is amazing, crazy and sad that people around the world are facing the same challenges which I do every day. I read this article on RA by Tiffany Westrich at HealthCentral.com a while ago, and I thought the writer did a great job of explaining what it feels like to have RA. In addition to the pain, she went on to include the fatigue and overall “sick” feeling.

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Today I’m writing about what RA feels like to me. This is my experience and it may not be typical of another person with RA.

My most painful time is in the morning, as my medications have worn away by this time and my body has stiffened during the night. I’m drained and tired, even though I spent the past 8 hours resting. It’s as if my body is unable to re-charge. I have a fever and my head is pounding. I feel dizzy and groggy. No matter how much sleep I’ve gotten, it feels like every part of my body has been broken. If I didn’t know better, I’d think that during the night I was somehow involved in an accident which caused my entire body to become damaged. RA is deceiving, because the pain does not show. There is no blood, yet my joints feel like someone took a hammer and pounded them repeatedly. Unless my joints are swollen, there aren’t any wound marks which reveal the extent of what I’m feeling.

It feels like stabbing in my joints.

Sometimes it feels like cold knives, like winter has somehow set into my body. For those of you who follow Game of Thrones, you’ll remember “Winter is coming” and all that breathtaking icy, snowy tundra where part of the series was set. That’s how it feels inside my body. I feel the cold coming on as my joints stiffen and I realize I can’t move. I’m trapped.

But sometimes, too, it feels like searing heat and pain radiating from the inside out. It feels like there are flames inside my joints. Sometimes the pain is constant, like the pains in my wrists and knees and elbows. It’s a dull, throbbing pain that’s always there in the background of my life.

If I jerk my joints too suddenly, if the bones grate or I stress them too much, I feel sharp pains as if someone shoved a knife into that joint. The sharp pains are the difficult ones, because if I don’t rest, these pains continue growing in magnitude and eventually render me immobile.

If you don’t have RA, all this probably sounds quite strange (and a bit depressing). 😦 😦 😦 But I do hope that persons who don’t have RA will have gained some insight into what RA patients experience, often on a daily basis. Living with an invisible illness has heightened my awareness of the fact that virtually anyone standing in front of me can be experiencing pain or difficulty and I’d never know.

I’d like to share one of my favourite quotes with you:

“Be kind, for everyone you meet is fighting a hard battle.” ―  Unknown

Wishing you all the best,

Ms. Rainbow

 

Image by Pixabay.com


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The healing power of music

As many of you know, when you have a chronic disease it’s a long road of highs and lows. There are times when Juvenile Rheumatoid Arthritis kept me glued to the bed as I was in too much pain to move. When I went off on my own to college, my knees decided that it was a good time to swell. I had to painfully hobble to classes that first semester, blinking back tears while wondering if I could actually make it. During these times music was there to keep me company, to comfort me, to energize me, to encourage me, to cheer me along and to keep me going. If music didn’t exist, my tough times would have been a lot tougher.

I encourage you to keep music close to you, especially during your low points with this disease. It helps distract you from the pain. Also, listening to your favourite musicians can be very comforting during your weak moments. If you have to go somewhere on your own, take your music with you in case you flare and need some encouragement to get through it.

It doesn’t matter what’s popular or what’s not popular. Listen to whatever music makes you happy.

I’ll leave you all with a song that I played over and over right after I had my ankle surgery. During that long and sleepless night in the cold hospital room, this song comforted me and gave me something to focus on apart from the pain. And I’m so thankful for that. It’s called “Angels” and it was originally sung by Robbie Williams, but I’m sharing the Jessica Simpson version ‘cause I love her powerful voice.

Do you have a favourite song that gets your through the pain associated with Rheumatoid Arthritis? Feel free to share it in the comments. 🙂

All the best,

Ms. Rainbow


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Finding love in a hopeless place

Hello everyone! This is my first post. I’m currently 28 years old and I’ve had J(RA) for the past 21 years. You can read more about my story in the About me section.

I want to start my blog by sharing this song with you:

It was originally sung by Rihanna, but this version was re-sung by Kenyan singer Alisha Popat, with violin by Lindsey Stirling. It’s a really beautiful song and the video touches me. Sometimes when I can’t sleep at night because my body is too painful, I listen to this song and it makes me feel relaxed and hopeful.

I never paid too much attention to the lyrics, but as I was in lying in bed one night I started thinking about the words as they apply to living with a chronic illness like (Juvenile) Rheumatoid Arthritis. During a bad flare we feel terrible and we wonder when the pain will ever end. If we don’t have the luxury of resting, we wonder how we’re going to get through it and how we’re going to move our bodies when they have shut down on us. And it can feel like a hopeless (and lonely) situation. I sometimes read blogs by newly diagnosed Rheumatoid Arthritis patients where they describe how hopeless they feel as their bodies start to turn against them. We start to worry about our futures, about our deteriorating joints and how we’ll manage as we age. It’s indeed scary and honestly if I stop to think about it I do feel scared. But you know what? I’ve realized that with time, we form a routine and get used to managing the illness. We become experts at being able to roll with the unexpected and we soon realize we’ll be okay, no matter what happens.

“Finding love” doesn’t have to mean romantic love. I think of it as loving life and finding a way to love life in the midst of a difficult situation. I try not to worry about matters which can’t be helped and I just try to enjoy my life and whatever comes my way. When you have a chronic illness the future is unpredictable as each day can bring unexpected changes. So give yourself a break every now and again and try to find something that will add some happiness to your life.

I wish you lots of luck in finding your love ;),

Ms. Rainbow