Today I want to share a story which some of you may or may not know about, since it happened over two years ago. On May 14th, 2011, Jeffrey Gottfurcht became the first person with Rheumatoid Arthritis to reach the peak of Mount Everest, the world’s highest mountain. Amazing, right? You can read more about Jeffrey’s inspiring story in this article from ABC News.
For many of us, Juvenile Rheumatoid Arthritis and other forms of autoimmune arthritis have reduced our mobility due to joint damage and the presence of pain. Yet, we’re still going. We’re still walking with our swollen joints, our limps, our canes and our crutches. We’re still dancing, climbing mountains and we’re still visiting Africa in our wheelchairs. We’re still living our lives, even with the pain.
Of course, there are days when flares make moving impossible – but we have to try to not let those days get us down. We are going to have so many of those days and we have to learn to deal with them. We can’t let them break us – so make sure you don’t let them break you. Even though I have had JRA for so long and have tried so many treatments (and am still trying treatments…) there are still days when I flare and my entire body feels it’s been broken at every joint. During these flares I wonder how I’m going to accomplish anything if I’m in so much pain. It’s during these times I remind myself to breathe and to look at how far I have come with this illness. I put on some music, read a book or do work – anything to distract myself from the pain.
Readers, how do you deal with flares?
If you’re newly-diagnosed or flaring with autoimmune arthritis, it may suddenly feel like your world has gone insane and that many of your life dreams are no longer possible. Hang in there, friends. Persons like Jeffrey Gottfurcht show us that this does not have to be the case. If we fight through the tough times and keep our heads up, we usually make it. We just have to make ourselves strong and keep going.
After being diagnosed with Rheumatoid Arthritis, Jeffrey founded the incredible Jeffrey Gottfurcht Children’s Arthritis Foundation, where children with Juvenile Arthritis may apply for wishes. Parents and younger patients, make sure you check it out.
In the article, Jeffrey says, “My ultimate message is that everybody has a Mt. Everest in their life…and no matter what condition you have, you can still go out and try things and live a life full of quality.”
Great advice to think about today. 🙂
Readers, how do you deal with flare days? Leave your suggestions or advice for others in the comments below – thanks!
Hope you are all enjoying your summers!
Ms. Rainbow
A while back I shared this wonderful video created by a group of teens at the 2011 Juvenile Arthritis conference in Washington, DC. I laughed but sadly connected all too well with one of the statements made by a young lady discussing arthritis – “And sometimes I feel like I’m 90….which stinks.”
When my (Juvenile) Rheumatoid Arthritis is active, I walk stiffly and my knees feel like there are cold knives wedged inside. My hips burn and I have to focus on trying to walk normally. My wrists and fingers get stiff easily and I am constantly having to massage them. I sometimes wonder if this is what it physically feels like to be older – like 90!
Do any of you feel “older” than you are because of your Juvenile Arthritis?
When I’m in pain and limping, I imagine that I must look old to the outside world. On the inside I hear my joints creak and I know I’m hunching and walking strangely as coldness sets into my joints and causes me to stiffen up. I imagine that I look tired and haggard. But then I catch a glimpse of a youthful face in the reflection of a shop window and realize that I am still young, despite the contradictory feelings inside. I see a young body which still looks like it can run a few races. And it motivates me to keep going and to not give up.
Reading through arthritis blogs by other young persons, I realize I’m not the only young lady who sometimes walks around feeling like she’s a granny.
Sometimes when I’m around my peers I feel like I’m an old woman. The pain and stiffness make me feel old. While they are running up the stairs, I sometimes have to reach for the railings to support myself. In my lifetime with JRA I have used canes, crutches and wheelchairs at some point, as I’m sure many of you reading this have done also, and perhaps still do.
I also feel old because of my RA-friendly lifestyle. When I’m out with my friends, I try hard to refrain from alcohol and I try to eat well to ensure that my body is getting enough nutrition. When I’m hanging out, guys often make fun of me for choosing juice over a beer, or for refusing to take shots, but I’ve had to force myself to evaluate what is best for my situation right now. (And for those of you who are curious, my RA has surprisingly become more active over the past few years. I am actually still trying to find a medication which can control it. I have started Actemra and I’m hoping to gradually taper my Prednisolone and see if my body can withstand it. Fingers crossed!)
It’s like what Christine Miserandino wrote in the “Spoon Theory.” The difference between being healthy and “sick” is when you’re sick you have to consider how every single action you make will affect your health, something which many young people don’t consider until they’re older.
While television ads blare images of women my age in sky-high, sparkling heels, I’m forced to bypass these trendy shoes and instead opt for padded, comfortable shoes which do help reduce my pain. Since my bones have lost density (from prednisolone usage), I work hard at strengthening my muscles and bones and getting enough calcium in my diet. In addition to the normal concerns 20-something year old ladies have about school, love, work and having kids, I worry about what my life is going to be like in 10 years, in 20 years, in 30 years. What will my bones be like? Will the RA ever stop damaging my joints? Are there more surgeries headed my way?
And there are a million more questions which I wonder about, as I’m sure many of you do too.
When my mind starts thinking like this, I take a deep breath and remind myself to take life one day at a time and often, one step at a time. It’s been a long road thus far with JRA and I know I still have a long road ahead. I have learned that there is no point in worrying about the future when I can’t predict it and I try to enjoy every day with the health and mobility which I currently have.
An old woman may live within me some days, but she is not really me. I don’t have 90 years of life experience to chat about. Rather, I’m a 20-something year old adult with Juvenile Rheumatoid Arthritis. I still love to go out dancing, I still like to get dressed up (when I have the energy to fire up my styling tools haha) and I still like to spend all night laughing with good friends.If you have RA or JRA, you know what I am talking about. Sometimes the management of this disease is overwhelming, but we need to remember that we are still actually young and deserve to enjoy life just like our peers. We may have to fight harder for our lives, but our happiness is worth it, don’t you think? I sure think it is.
As Juvenile Arthritis Awareness month came to a close a few days ago, I want to say that we are all fighting this battle together. It’s true we may not have that luxury of being as carefree about our lives as our friends, but know that you aren’t alone in the challenges which you face. No matter what happens, even with our limps and walking aids and mountains of pills and creaky joints, let’s promise ourselves to keep fighting, to keep laughing and smiling and to keep pushing ahead and living our lives as best as we can.
Like the song by Fun, we are young, after all. 😉
Readers, do you ever feel older than you are because of Juvenile Arthritis? Share with me and other readers in the comments. Thanks!
For many of us, Juvenile Rheumatoid Arthritis and other forms of autoimmune arthritis have reduced our mobility due to joint damage and the presence of pain. Yet, we’re still going. We’re still walking with our swollen joints, our limps, our canes and our crutches. We’re still dancing, climbing mountains and we’re still visiting Africa in our wheelchairs. We’re still living our lives, even with the pain.
RArainbow 