RArainbow

A resource blog for young women living with Arthritis


1 Comment

Strong hands and beautiful joints

If I could tell the world just one thing
It would be that we’re all okay
And not to worry ’cause worry is wasteful
And useless in times like these
I won’t be made useless
I won’t be idle with despair
I will gather myself around my faith
For light does the darkness most fear
My hands are small, I know
But they’re not yours, they are my own
And I am never broken.

Hands – Jewel

Some of you may be familiar with the lyrics of the beautiful song “Hands” by Jewel. Though it is not intended to be about Juvenile Rheumatoid Arthritis (JRA) or other forms of autoimmune arthritis, I think it can apply very well to our situations. Worrying is part of living with illness, but we often reach a point where we realize that we cannot control what’s happening. And from there, we learn to accept and make the best of our situations. The lyrics of the song also apply literally, because when we get Rheumatoid Arthritis our hands are often affected. And that’s what I want to speak about today, among other things.

How many of you reading this have arthritis in your hands? How many of you have joint “deformities” as a result of Juvenile Rheumatoid Arthritis or other types of autoimmune arthritis?

I was diagnosed with JRA at age 7 and by age 8 my right wrist had completely fused and my left had partially fused. A couple of my fingers have what is referred to as “boutonnièrre deformity.” (I plan to have  another discussion on the word “deformity” another time, it’s coming 😉 ). Over time most of my joints have gotten affected and some look a bit squishy and bony and wonky (very scientific terms, I know ;)).

handsI know a lot of us are self-conscious about the way arthritis has affected our hands and other joints. Maybe it’s because I grew up with my damaged joints, but I have never seen them as that big of a deal. My “deformities” are part of me. They’re my fingers and my hands and my joints and they have been through so much pain already. My poor fused ankle has been through two surgeries and I think it’s an incredibly resilient body part.

If anyone makes fun of your joints, don’t ever allow that to make you feel bad about yourself. Your situation is incredibly unique and your body has been affected by aggressive arthritis. Why should you feel bad about that? If you are scared about people teasing you about your deformities, think about it like this: the people who tease you are likely not people you’d want to be friends with if they’re that unkind. The people who take the time to listen to you and learn about your affected joints are extra-special, so when you find them, make sure you cherish them. 🙂

If you are worried about gentlemen friends freaking out when they go to hold your hands, put those fears to rest. A guy who loves you is going to be happy to hold your hands no matter what they look like. Promise! 🙂

Our Arthritis-affected hands are strong and allow us to write exams, to cook, to drive, to sew and to give hugs. Our affected joints allow us to work, to travel and to care for our families. Let’s give our bodies the credit they deserve. They are fighting a battle every day and they are so strong!

Remember also that having autoimmune arthritis isn’t a typical situation which every person experiences. My JRA has taught me to be stronger and to look beyond physical appearances. It’s also taught me to look beyond what persons may say about my body. At the end of the day, those comments don’t affect how our bodies perform physically. So let’s take pride in our bodies, our strengths and our abilities and love ourselves with our arthritis. Elizabeth of That Girl With Arthritis wrote a very inspiring post about being “Chronically extraordinary” and I have to say I completely agree! 🙂

Let’s keep pushing on with our beautifully strong joints and chronically extraordinary selves. 😉

Readers, how do you feel about your affected joints? What has your condition taught you? Feel free to discuss these questions in the comments or leave advice for those who are still learning to accept their amazingly beautiful bodies.

All the best!

Ms. Rainbow

[Image by pixabay.com]
Advertisements


2 Comments

The Spoon Theory and The Gorilla In Your House

Hi everyone! Today I want to share two really great articles which you may find useful when explaining what it’s like to live with chronic illnesses such as Juvenile Rheumatoid Arthritis (or other forms of autoimmune arthritis) with your friends or loved ones.

The first is the very popular “The Spoon Theory” by Christine Miserandino. In this article Christine sheds light on what it’s like to live every day with lupus:

spoons“I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.”

Read the rest of the article here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

The other great read was written by Mary and is titled “The Gorilla In Your House.” This piece takes a more humorous but equally realistic look at life with chronic illness or disability:

gorilla“The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.”

Read the rest of the post here: http://batsgirl.blogspot.com/2008/04/gorilla-in-your-house.html

Hoping that you’re all keeping well and that your gorillas are not behaving too badly! 😉

All the best,
Ms. Rainbow

 

[Images by pixabay.com]


10 Comments

Some words on bullying, teasing and the negative comments which people make

crocWhen you grow up with a disease like Juvenile Rheumatoid Arthritis, it’s likely that your body may be physically affected by it if it’s not treated right away. Many of us have damaged joints, “deformities”, problematic eyes, thin bones due to osteoporosis and stunted growth. Some of us need walking aids and wheelchairs to get around. Many of us walk with limps because our ankles, knees and hips are damaged and painful. The medications can also have effects on our weight and our appearances. But you know what? Like the cool kids we are, we deal with it. We learn to get through these challenges and continue living our lives with JRA walking by our side.

But sometimes, worse than the physical pain of autoimmune arthritis is the emotional pain which comes when persons tease us or make negative comments pertaining to our situations. Browsing through arthritis blogs or forums, I’ve read countless stories about kids being teased because of the way they walk or because they have developed the characteristic “moon face” from prednisolone usage.

How many of you reading this have been teased due to the way autoimmune arthritis has affected your bodies and your situations?

The really sad reality is that bullying isn’t limited to just kids with illness, but virtually anyone. Bullying isn’t confined just to schools either. Even adults bully one other. I’m a grown 28-year old woman and I still encounter persons who go out of their way to speak negatively about my tiny size or my lack of physical strength. But with limited energy (and spoons ;)), I have learned to pay them no attention.

Just as we can handle our JRA, we can handle the negativity. We have to learn to deal with it. As we go through life we are often going to meet negative people, but we have to be strong enough to not let anyone tear us down and keep us from accomplishing our goals.

If you are young and being bullied in school, speak to your parents or teachers who will be able to guide you best as every situation is unique. I found a few really great articles on bullying and how to handle a bully and have included those links at the end of this post. As we get older, however, we can’t always run to our parents or teachers to protect us – we need to learn to be strong from the inside, so that we can protect ourselves. It may take some time, but I want you to work at loving yourself and being so strong on the inside that nothing can get you down.

If someone makes negative comments about your body or your JRA situation, consider these points:

1. Those negative comments are just one person’s opinion and don’t reflect who you are. You know yourself best and you know how much you’re worth. That person who teased you has no idea what you endure on a daily basis or how amazing you are. Let those unkind words fall to the ground and don’t carry them with you. Don’t allow one person’s words to break your beautiful spirit.

2. People who use their energy to tease others are often insecure in their own lives. If you dig a little deeper into the lives of the person who teases you, you’ll often find that they are unhappy about something in their lives. They try to divert attention away from their insecurities by teasing others. Ironically, I’ve often found that persons who bully are the ones who need the most support.

3. You have Juvenile Rheumatoid Arthritis and your situation is completely unique. Remember that. JRA affects each of us differently, depending on the age we are diagnosed and the aggressiveness of our conditions. If someone makes negative comments about your body, pay them no attention. You cannot compare your body to any other person’s body, not even someone else who is living with the same condition. Take that pressure off yourself and enjoy and love your body exactly the way it is, no matter what anyone says.

4. You can stand up for yourself. When I say stand up for yourself, I do not mean fighting. But you can defend yourself. You can explain to persons that you have JRA and it has affected your body. You can tell them that their words are hurtful. You can simply shrug or laugh it off. Bullies are often looking for an easy target. When people see that you are willing to defend yourself, they are less likely to continue because they want to avoid the confrontation.

5. You can walk away. In life we have to know when to fight and when to walk away. Many persons bully because they want to get a reaction. When you stay calm and don’t allow yourself to get bothered by their words, they often feel defeated and move on.

Guys and girls, I know it’s hard. JRA already takes so much energy out of us and having to deal with negativity at the same time is tough. But please don’t allow the insensitive words of others (who have no idea what it’s like to live with chronic disease) to bring you down. You all have such amazing and beautiful spirits and it would be really sad if those spirits faded because of a few nasty words made by a silly person. Make yourself so strong on the inside that no one can get you down! 🙂

Readers, if you have any stories to share or advice for dealing with negativity, feel free to discuss it in the comments.


I found some links to great articles on this topic which you may find useful:

 

Keep strong everyone!

Ms. Rainbow

 
[Image by pixabay.com]