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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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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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]