Teenage Lupus

By Siobhan

Aged 16

A pain in my legs 

Can't get out of bed

Lupus can really give you a pain In the head

Fingers and toes nobody knows

How my life has changed

As the Lupus grows!

A red rash on my face

Can easily come

Just out of the blue to make me feel glum

I'm sixteen years old

And I have been told

You have to live with Lupus

Now I think that is cold

The hurt and the pain

Drives me really insane

Steroids and cream

Interrupting my dream

My stomach and back,

Knees, ankles too

All get inflamed and I just can't do what I like to do! 

Lots of worries and stress it can cause 

My school days are tough

This gets on my nerves.

Lots of meds and blood tests too

And bones that all ache like I have the flu

But this is my life

And I'm taking it not

I'm in control of calling the shots! 

And now that I'm here in Tallinn with you

I've proved to myself theres a light there too 

I might be sick and will not pout

I might be down but I'm certainly not out!!!

 © Young Arthritis Network

Remission or wishful thinking ?

Medical Update: I feel amazing ...Virtually pain free minimal pain in wrists and no inflammation !!! Goodbye Arthritis 

Feeling pretty amazing at the minute ... words can’t describe the freedom & how it feels.For the first few days my brain wonders whats going on ... Pain free and moving hmmm this is new !!

 3 weeks later .....

Feeling flexible and pain free. Friends have noticed a huge difference especially my energy level’s which have reached an all time high. I’m doing so much these days I’m on a roll my brain is working overtime and my idea’s for the Young Arthritis Network are flowing .... Hmmmm I’m liking this new me !!!

Still feeling great no inflammation ... Am I in remission ?? Oh god Am I in remission ??? maybe stop STOP don’t jink yourself !!! But maybe oh maybe...Stop stop stop !!!

Forgetting what pain is like J A very strange feeling in my body I walk with no stiffness- knee’s move loosely ... Freedom !!!

No swelling on pointe :)

Cleaning my room I discover my beloved ballet pointe shoes. I stop and cry it’s my weakness looking at them breaks my heart every time .

I nervously place my pointe shoes on and go onto pointe gaining more confidence I begin to dance and my body moves in a beautiful elegant way like the way it should unlike previous attempts.  The beauty of dance I drift away into my own world – Best feeling !!

4 weeks  later...

Should I jink myself ...

I’ve felt pretty much pain free for the past few weeks ... I feel so good that I wondered what was wrong??OK I’m not a negative person & this may sound crazy but hey that’s never stopped me admitting things before so a million possibilities cross my mind.

After six long months in physio I am finally discharged feeling stronger than ever before. Perhaps I’m really in remission this horrendous disease has left me .. We’ve parted ways .... my positivity has finally burned out arthritis. !!! Laura 1 Arthritis 0 -I’m FREE !!!

Brownies in the making

So I meet one of my rheumy friends who finds my recent few weeks amusing ... She jokes “Maybe your pregnant & in remission?” Ha ha ha ha ha oh.... shit !!!? Her joke was enough to make question myself.... 10 second panic station averted !!

5 weeks later...

Things are changing I’m doing so much I’ve completed the Flora Mini Marathon for  Arthritis Ireland & I’ve started Yoga classes.  I’m also back cooking & baking ..nom nom nom !!!

Team Young Arthritis 

Still feeling like a new person .... long may it last !!!-WINNING .....

RA superhero climbs Everest

Have you heard of Jeffrey Gottfurcht???After reading this you’ll never forget the name. 

On 14^th of May 2011 Jeffrey Gottfurcht reached 30,000ft to the TOP OF THE WORLD Mt. Everest but this is not what makes him unique on May 14^th he became the first person with Rheumatoid Arthritis to reach the top of Everest.

Diagnosed with RA at the age of 28 his diagnosis didn’t stop him . He become an advocate for people with arthritis furthermore he is the founder of  The Jeffrey Gottfurcht Children’s Arthritis Foundation.

Everest is like the Olympics of climbing, which many sportspeople aspire to reach. An uphill battle & a challenge many will never attempt but not Jeffrey Gottfurcht. He didn’t let RA take him down nor did he give up on something he loved instead this man did the unimaginable he went above and beyond to the top of the world.

The road to Everest is tough it requires many years of training according to Ian Taylor  the youngest Irish person to climb Everest .The statistics are not exactly positive with 1 person in every 10 who make it failing to return. As one moves from base camp 1 to 2 to 3 to 4 oxygen levels decrease and Ian Taylor describes a basic task as difficult a simple walk across the room can take up to 5 minutes (sound familiar??). At altitude our body becomes weaker we are exposed to risks such as acute mountain sickness, pulmonary edema, ataxia, blood clotting and the list goes on so for a person with RA to undertake this challenge in my opinion is nothing short of amazing.

I don’t have to tell anyone that living with arthritis can be a struggle. It’s not easy we’ve all had mornings when our body won’t allow us to leave our bed let alone move an inch so when I heard a guy with RA was going to take on Everest I honestly thought it couldn’t be true. Instead of looking at his disease as barrier he thought of it as a challenge to overcome. The sheer challenge of Everest is unimaginable just think climbing as oxygen levels decrease, the body becomes weaker it slows down but top this with RA challenging is an underestimation.

So his motivation behind this trip a selfless act to make a difference to the lives of children with Juvenile Arthritis by raising awareness of his charity the Jeffrey Gottfurcht Children’s Arthritis Foundation a make a wish foundation for children with JA.

Some people are born to make a difference & this man is definitely one – a modern day superhero. One man has broken down barriers & given hope to people worldwide with RA . He is an amazing advocate, one which the arthritis community is proud to have.

On a personal note I’ve followed this journey closely & when I found out Jeffrey had reached the top I’ll admit it I cried & cried with happiness. To say it’s touched my life is an understatement it’s done much more than this it’s given me hope that my dreams are achievable now more than ever & if I work hard I’ll achieve them.

Jeffrey from the Young Arthritis Network we salute & thank you ...What an incredible journey.

“There are no borders, no limits and no frontier. Just keep moving, and do exactly what you set out to do.”

–      Jeffrey Gottfurcht.

A details interview with before his journey

More info on JGCAF

Images are not my own copyright @ Nutrapharma

My Rheumy

This week, I had my visit to the Rheumy for my routine check up as the days approached I began to think of how far I’ve come. 

In the overall scheme of things I’ve done more than I ever thought was possible. Each day I push myself to be the best that I can be. Don’t get me wrong there are certainly times when I throw a total diva strop about having to do those evil injections & about arthritis in general but for the most part my mission is to live life to the full.

So as the appointment date get’s closer I begin to evaluate the past few months. I always write a list of questions that I would like to ask & like most people I glance at the calendar to see how I’ve been feeling.

In my mind I built a big picture of how fantastic I feel &  I’ve even managed to erase the bad days from my mind. Looking at the evidence in front me I had no option but to face up to reality I’ve my fair share of bad days. My mission - to go into my Rheumy with three little words "I’m doing great" but unfortunately that won’t be today.

“We must rediscover the distinction between hope and expectation.”
~Ivan Illich

Heading to the appointment I build myself up I’m not sure what I'm expecting but after my appointment I feel deflated.  In my mind I went thinking as I always do with that expectation that my Rheumy has all the answers including the one whereby I receive the magic potion where I’m free from arthritis. 

No matter how many time’s I’ve seen my rheumy over the years I still leave disappointment and please don’t get me wrong my rheumy is fantastic he’s given me a new lease of life but I always leave feeling deflated.

I ask myself why I fell like this? Is it because for many years I was told I would grow out of JA ?Do I expect too much?Or maybe I forget my rheumy is not god he doesn’t have all the answers or at least the one I’m looking for the big C – Cure .

Am I alone in feeling like this ???

Spinning the airwaves

It’s been a crazy couple of weeks but crazy in a wonderful way. Last week myself & Ann Marie Brennan got to head down to Spin 103.8 Dublin’s trendy radio station. We got a fantastic opportunity to hit the airwaves and create some awareness of our invisible disease Rheumatoid Arthritis.

A mixture of excitement and nerves on our way to the studio. I’ve done a few media interviews but Spin 103.8 is the station that many of my friends listen to so the pressure was on. I know many of my friends listen in at work so I was feeling a little nervous.

We arrived into the studio to meet Jonathan & Claire on their daily talk show “The Spin”.  We spoke into what can be described as the microphone from the Band Aid video and before we knew it time had flown by and we had finished our interview. If you missed us on the show last week don't worry here's your chance to listen .See below :)

After the interview someone asked me why I do interviews? The answer took me by surprise you see to me it obvious . I’ve lived with a disease that while people heard of Arthritis they know very little about it or the impact that it has on the lives of the many young people. For many years I felt alone that I was the only young person to have arthritis and if I wasn’t the only one where are these so called “young people” their not in the clinic when I see my Rheumy , their not at my physio sessions so where are they?? In fact do they exist?? 14 years after my diagnosis I met the first person my age with arthritis  so why do I do this because I never want any young person to feel alone ever again. I want each and every person who’s diagnosed to know the Young Arthritis Network exists & they are not alone .

Little things make a difference

Am I living the life I want ? If im honest I feel like I’m missing out on living the life of an average 20 something .. So I’ve asked myself why am I not ? Is it the illness or is it me?? The answer it’s a mixture of both.

What’s stopping me ?? I’m tired sometimes when I’m in pain I lose the get up & go which if left it becomes a routine. I’ve had arthritis for so long sometimes I naively think I know it all in relation to my own health but I fall into the trap of “ I CAN’T” so I decided enough is enough.

Anyone who is “stuck“ in a routine whether they have arthritis or not will become tired & bored so I’ve ditched my old lifestyle & begun changing things that I can’t do.

I’ve become interested in positive psychology & how this can benefit someone with a chronic illness. I’ve surrounded myself around positive people and I’ve really noticed a HUGE change I even notice a difference in how I analyze things. Is something really impossible? Why is it impossible? What can I do to get to where I want to go ? So now my end result to quote a very famous builder             “ Can we do it? Yes we can”

So to bring this into perspective how can this affect my life & my health?! I’ve looked at a few area’s which on a daily basis affect me….

I CAN’T do this because ….

Problem A:

I can’t do the shopping because it’s so heavy & Im tired …..then when I get home I’m simply exhausted so I call the local take away.

So Monday I went shopping & over came my fear of grocery shopping. I struggle to do the weekly shop so usually I pick up a few bits on my way from work because I can’t get carry the bags or lift the basket. So I got a trolley which I filled up with loads of fresh fruit, veg ,& fish. After I checked it out I also overcame the second obstacle & asked one of the shop assistants would they help me bring it to the car which was no problem at all.

Ohhh I felt some level of achievement by Friday I had cooked a healthy meal each evening.  I also picked up a few healthy snacks because I knew I had a busy week ahead so I avoided snacking or becoming over hungry and calling for a take away. By Tuesday I had soooo much more energy but I also knew that Wednesday I wouldn’t be home until 8 so I make a super yummy curry for the following day .

Problem B:

I CAN’T do exercise it hurts my body… well I haven’t the time by the time I get home I’m so tired and then it costs a fortune to join the gym. So join a class ? Well em I’m too afraid to go to an exercise class because of my limitations.

Enough is enough this excuse is rubbish even if I do say so myself…. Let’s get to reality here I’m never going to be a gym freak it’s soooo not for me but I can get fit & healthy which is what I wanna do.

I’m tired well duh of course you are who wouldn’t feel tired when your lazing about on the couch watching tv- my arthritis has nothing to do with this.

So what can I do to change this? Split up the exercise into mini sections I’ve split walking into two parts 3km to work in the morning & 3km on the way back.

I really wanna do yoga class but I don’t think I’m strong enough just yet so I asked my physiotherapist to help me out she suggests I buy an exercise ball to help build up my muscles etc….So off I went to buy an exercise ball. 

Guess what before dinner is prep’d or while it’s cooking I’ve managed to do 30 min of exercises each day for the past two weeks it’s helped I’ve done it all before soaps start & I’ve blasted a few tunes out to keep the motivation going.

I’ve also got the Young Arthritis Walking group on the go so I’ll have more motivation to get going. I’ve  even signed up for Joints in Motion & the Mini marathon so nothings stopping me now because I'm doing it for myself.

Next week I plan on going swimming initially I would like to go once a week. So I’ve arranged a swimming buddie so I'll have more motivation to actually go.

By making both of these changes it’s made such a difference to my life over the past two weeks. I have sooooooooo much more energy in fact for the first time in a very long time I feel ALIVE in the sense I could do anything.  I’ve noticed I’m in less pain now I’ve still got pain but I have noticed a reduction.

So with all this energy I was able to spend more time living the life of an average 20 something year old. 

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Valentine's Day

Valentine's Day the day to buy cards and presents... but for me Valentine's Day represents something else. Each year all I want is to spend quality time with my other half most of my friends think I'm crazy when I say that I really and truly do not want a present.


All I want is time to be with my boyfriend because time is precious anybody with any kind of long term illness will tell you that quality time with a loved one whether it be your partner , family or friends is valuable. When you calculate all the time we've lost either because of fatigue or  illness it can really stack up and sometimes I feel like I'm missing valuable moments because there is no where I'd rather be than by his side but this is not always possible.


So each Valentine's Day myself and my boyfriend make a point of spending the day together doing something we both love for me is worth it's weight in gold. It gives me chance to feel "normal" to forget all my worries and become carefree for just one day. Valentine's Day is also a day when I let my boyfriend know how much I appreciate every little thing he does . All to often we take the little things our loved one's do for granted it becomes the norm and we forget to say a special thank you to those whom we are closest.


I know my boyfriend has had a sacrifice certain things because I am unable to do everything but he never complains about it in fact he is one in a million a true selfless person.He gives me so much without even knowing it.


Tonight I am going to go home and tell him how much I appreciate the little things and how much I truly love him because I am not the only one which this disease affects and too often it's something I forget.


When it all boils down to it Valentine's Day is not about material things it about spending quality time with a loved one and making the special person in your life feel one in a million.


Happy Valentine's Day
xxx


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