Tuesday, 3 July 2012

A Hero's Metaphorical Climb

Climbing high mountains is a powerful metaphor for the challenge of living with RA.
A metaphor which one inspiring heroic man truly understands and has lived.

64-year-old Tim O'Hagan recently returned from climbing the Kala Patthar mountain in the Nepalese Himalayas. Kala Patthar is hundreds of metres above Mount Everest base camp, standing over 5 000 metres high.  

Having being diagnosed with RA some 27 years ago, Tim went from being an ultra-marathon runner and avid athlete to a man who struggled to simply get out of bed in the mornings. Tim worked as a journalist for most of his life, but as the RA continued wreaking havoc on his body, he had to be medically boarded from work in 2001. 
The disease had devastating effects on Tim's life. He recalls how at times the pain was so severe and debilitiating that he would lie under his desk at work to find some relief.

Tim early on became aware of the lack of suppport and awareness about the life-altering effects of conditions such as RA and this encouraged him to raise awareness and educate people about autoimmune conditions. 
Further challenges and complications arose when Tim's RA caused hardening of his arteries and he had to have two double stent implants as well as open heart surgery.
His cardiologist suggested that he do some walking in the mountains as exercise during his recovery. At first it was a great challenge to walk only 50 metres in Newlands Forest, but thanks to sheer determination and resilience, Tim has now climbed thousands of metres up a mountain known for its extremely challenging conditions at that high altitude.

Tim also very proudly raised awareness in aid of the Abbott Laboratories "Join the Fight Against Autoimmune Diseases" initiative; an initiative launched to unite and support all patients suffering from autoimmune diseases.

A huge WELL DONE to Tim for proving that even an RA patient can climb every mountain!

Tim O'Hagan (left) on Kala Patthar Mountain.

Joining the Fight Against Autoimmune Diseases.

Friday, 11 May 2012

I call it a lesson learned

There are always new lessons to be learnt when living with a chronic illness. Some of these lessons we resist and others we know are going to have to be paid some attention to eventually. I was, can I say, privileged to learn an invaluable lesson recently.

It's nearly a month ago that I ended up in hospital after some scary heart palpitations resulting in chest pains, anxiety and fainting. All this on my friend's couch. As much as I see this as somewhat of an embarrassing moment, I am ,in hindsight, thankful that it happened where there were people around who could help me and get me to an emergency unit.
An RA flare-up I'm used to. I know the drill, I know the meds I'll be given in hospital, I usually spend my flare-up time in a certain hospital with my Rheum nearby. So as painful and inconvenient as it is, it's also in some ways my comfort zone. My RA  flare-up comfort zone.

But on this particular Monday night, it was something else, something outside the comfort zone. There seemed to be some kind of problem with my heart...of all things. I was taken to a hospital I've never spent some time in before (sounds like doing time in prison!)  I was treated by a different physician and the nurses didn't know me. When you are a frequent visitor to hospitals, you build a relationship with your nurses and while there may be nothing wrong with another hospital it can be daunting to be treated by strangers.

So there I was on a nebuliser every few hours, an oxygen machine (this was also a first) and a drip with some pain medication. During the next few days I had an ECG on my heart, an EEG on my brain, an MRI and was on a 24 hour heart monitor. As much as I'm used to hospitals, tests, drips and so forth, I must admit that this was pretty scary.

So, here's where the lesson comes in.
I've had overwhelming support during that week in hospital and the weeks to follow. It's always been a struggle for me to ask for help, allow people to help me and to truly let them in and be there during the worst of the illness. Over the years I have come across so much judgement, rejection and just a complete non-understanding, which resulted in not trusting anyone with the worst of it all. My mother has always been the constant, the one who would feel with me, never reject me and be there even when I don't ask.

As much as it was a lesson for me to trust friends over the past few weeks, I think it has also been a lesson for my mom. She's thousands of kilometres away and is so used to being the one getting me through flare-ups and whatever else comes along, that we tend to keep the 'struggles' to ourselves.

Not this time though. Some amazing friends and people who are truly like family to me took over. They were there in every way possible. I had visitors everyday; bringing me books and magazines, snacks, funny stories and so much love and care.
A week later after being discharged, arrangements were made without me being aware of it, for a place to stay where there'd be someone with me during the day. It was the greatest comfort to know that I would not have to try and recover on my own.
Not only did I feel like I had a supportive new family, but I felt an unconditional love which brought amazing peace and freedom that I've missed over the years.

As much as we all face rejection and judgement especially with these, as they are called, "invisible" diseases, it is the greatest comfort to know you can trust someone within your pain, disability and fear. When you find that person or people, let them in, release your pride, release the fear and anxiety and live within the safety and peace of their unconditional love.

"A real friend is one who walks in when the rest of the world walks out."

Wednesday, 28 March 2012

Living with the "Great Pretenders"

I was recently asked to have my mother answer a few questions on what it is like living with someone who has Rheumatoid Arthritis. The Joint Ability magazine, published by the Arthritis Foundation of South Africa, is doing an article entitled "Living with a Loved One who has Arthritis". 

In my opinion, this is a very valuable topic to broach, as many people still lack the knowledge on how this disease can affect a person's life and how important a support structure is when you are living with a disabling disease.

As much as the disease is a personal thing and you are the one dealing with the physical pain, it also affects those around you. Even more so with a condition such as RA, as there is not much those around you can do in the really bad times. Yes, an arm for support is great, helping you in and out of a chair is wonderful, but this tends to make the 'patient' feel very 'patienty'. That's my new word...patienty...and I don't like feeling patienty...who does?

Especially when you're still young and you suddenly have to be helped around like a granny!

My advice: Make sure you look super stylish and wear a gorgeous smile during these times. Yes I know the immense pain can cause you to pull faces you never thought you had, and you can't exactly wear pretty heels during a flare, but this can help boost your confidence when all you really want to do is scream and cry in pain. Plus, people don't see you as a very young-looking granny, but just a beautiful young woman who needs assistance. I'm still waiting for that day when I'll be assisted by a strong, gorgeous man;) 

When asked what she has learnt from living with someone who was badly disabled, my mom had an amazingly insightful response:

"You need a lot of patience with that person and helping them find ways to get around doing the normal, everyday things. Not every day and every month is the same with an RA patient, there are times when they function as 'normal', at times she'll be on crutches and still other times I have to push her around in a wheelchair."

Mom and me on Chapman's Peak.
Anyone in a similar situation can attest to this. You never know what each day will be like. One day I might be feeling so good I am able to spend the day roaming a shopping mall, while the next day I can barely move my hands and need to be fed. 

My mom's advice to anyone living with someone who has RA:
  • Believe them when they tell you they are in a lot of pain, as this can manifest over night.
  • Be patient when they can't accompany you to do things they used to enjoy.
  • They are GREAT PRETENDERS because they don't want us to see that they are battling with the normal, everyday, smallest tasks.
This is the first time I have heard a very honest account of what it's like from my mother's perspective. It is the greatest thing to have that kind of support, the kind of support where you don't even need to say anything and the person just knows what you need. 

It has become second nature already for my mom to extend her arm to me whenever we're together. Nowadays I don't even say anything when I don't need it as walking support, I just enjoy the fact that it's there and I know I'll be safe no matter what.

A Great Pretender :) 

Wednesday, 12 October 2011

Make a Move on World Arthritis Day

Today is World Arthritis Day. The one day in the year when people cannot pretend that the various forms of Arthritis does not exist and does not affect millions of people. It's a day for raising awareness on Arthritis and honouring those who live with the chronic pain day in, day out, and still manage to give you a smile or a few.

I attended a World Arthritis Day event of the Arthritis Foundation of Johannesburg yesterday and once again felt immensely grateful that I can have access to biologic treatment and that my early diagnosis means that my disease will not leave my body deformed in old age. As I watched patients come in on cructhes, barely able to stand up straight, it saddened me to know that these people, who are already in their 60s and older, did not have access to the right medication at the right time.

And there we were, myself and three of my fellow Humira patients, performing last year's Live and Dance for Life campaign dance and addressing the audience about the difference the right medication and being part of a patient support network, has made to our lives. They were enthusiatic to hear what we had to say and they watched the dance with unbelief. Which I guess is the standard response to seeing Rheumatoid Arthritis and Ankylosing Spondylitis patients DANCE!

We raise awareness and share our stories for these patients. To highlight the true plight of someone living with an auto-immune disease, to make our voices heard and be the voice of those who are too tired and in too much pain to fight. We raise awareness to make medical aids see what an amazing difference biologic treatment can make and that they are robbing a patient of the opportunity to take back their lives by not covering the cost of the treatment.
We raise awareness to dispel stigmas about Arthritis and make people see that it can affect anyone, no matter their age, race or gender.

The theme of this year's World Arthritis Day and World Arthritis Month (October) is
"Move to Improve".

The message: Keep moving. No matter how slowly or how you do it; just be sure that you don't have too much joint swelling and can move without doing any damage. Be it through exercising in a heated pool, doing aqua aerobics, stretching, yoga, or my personal favourite of course, dancing.
But take it easy...remember that you're moving to improve, not to impress.

I think I will be honouring myself and my 10-year Rheumatoid Arthritis journey with a little dancing infront of my mirror tonight....and maybe a dance movie. Don't judge my celebratory activities!

Raise hope, raise awareness, raise those joints back to life and keep them moving!

And that's Trixie's RA Trix for World Arthritis Day!


Friday, 19 August 2011

Body K.O

It has been too long since I wrote my first blog entry. Yes, I understand that with great blogging comes great responsibility. Although I'm not sure when I will be able to call this great blogging.

Unfortunately a few weeks of stress, feeling really under the weather because of, well, the weather getting me under, and a quick travel for work, I have not had the time, energy, joint strength nor heart required to blog.
All that aside, there's been an interesting, though painful, battle going on in my body since the last bloggo. I have had to once again face the reality of the RA monster, but even more so Superboss Fibromyalgia (hereinafter referred to as Fibro Superboss)! Although I will always be ever so slightly aware of these two evils, the majority of the time I can ignore them enough to live as normal a life as possible.
Thanks photobucket.com for a cute description.

Mayo Clinic.com describes Fibromyalgia as a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. So you can imagine; while my beautiful, biologic-filled joints are trying to stay together and keep me moving, Fibro Superboss simply steps in and creates havoc. This means that as soon as I experience muscle spasms so extreme that I need to make a stop in traffic just to attempt that all important human action we call breathing, my joints start swelling and the inflammatory worms get going. It's like a Street Fighter (or maybe I could call it, Body Blast) battle. Fibro Superboss vs RA Monster. Fibro Superboss uses spasmonal powers, while RA Monster blasts it with inflammatory-worm bullets. I know it sounds ridiculous, but hey, it's hard enough to describe the pain of these diseases without sounding ridiculous. Thanks to all of this, I've been experiencing anxiety attacks and chest pains. I mean, who wouldn't, in the midst of war.

This battle really managed to K.O me a few weeks ago, when I ever so graciously collapsed under all the pain. In the arms of a man, nonetheless! And no I cannot say that this resulted some romantic comedy/drama with a happily ever after. The man is one of my greatest friends and my boss, but that's besides the point. At least this K.O didn't happen during my long journey home from work.
This battle just seems to have infinite rounds and has been rendering me exhausted the past few weeks. My hands can't seem to keep anything safe and gripped for more than 5 minutes, my legs are not allowing any long periods on heels (not even kitten-heels) or too much walking, and my chest makes me feel like a 90-year-old woman with respiratory problems who needs to rest after every 10 minutes.

So amidst this body blast battle, I have to go see a dance show which I am required to review. The show, Burn the Floor, is the most incredible Latin and Ballroom dance show I have ever seen. And of course I sit there wondering why the dream of dancing was not in my cards and trying not to cry my eyes out (as is customary whenever I even smell dance). I heard this very insightful phrase the other day: "We live the dreams we did not dream for ourselves". How apt. 
So while watching this fantastic show, my heart danced. My legs on the other hand, were screaming in pain at the mere sight of some of the dance moves, letting me know that I should not even try to try that at home. But being me, I did almost attempt some of it at home. The desire never goes away.

Oh well, as soon as I finally conquer the RA Monster and knockout Fibro Superboss, I'm going to get my dance on!

Thursday, 14 July 2011

Ready, Set, Go!

I have finally decided to join the blogging, el bloggo, bloggedy blog world. Not because most of my Journalist buddies have one, not because it's where most people spend their "free time" reading about other people's lives, but mainly because after much research  I have found a few great blogs out there for people living with chronic Auto-Immune Diseases. And unlike what most "normal, healthy" people may think, these are not depressing, cry-me-a-river blogs, but actually entertaining reading and sometimes very humourous pieces posted by many of these Superheroes.

Beautiful stilettos...how I miss you! Maybe one day; for now it's comfy, pillow-soled shoes.
 So you may ask: Why do we deserve to be called Superheroes? Well, anyone is a Superhero really; we all have our own powers that make us unique in this very replicated world. Our Superhero status though comes from the fact that we live daily with debilitating, chronic auto-immune diseases such as Rheumatoid Arthritis (RA). Living with something like RA is not easy, it's not fun and it is most certainly not trivial.

Being able to walk up three or five stairs, being able to get out of bed and get dressed for work or being able to go grocery shopping are our superpowers. They may sound like the simplest tasks, yet these tasks are what people living with RA struggle with on a daily basis. These are our milestones. Today I could get in and out of my car in a flash...with minimal pain! Trixie 1- 0 RA

Some of us develop even greater powers, such as running a marathon, climbing a mountain or my personal favourite and lifelong passion, DANCING! I danced before I could walk and sang before I could talk, according to my mother. So imagine my shock at being diagnosed with RA at the age of 16 and having to put an abrupt end to my 3 days a week dance classes. No more "breaking it down"...that phrase got a whole new meaning: me almost breaking something. Haha!

Fast-forward 4 years and I start on a biologic treatment called Humira. Humira is made from human stem cells and has been a miracle drug for many patients living with RA. And when I say miracle I don't mean that lightly. Thanks to Humira and of course a positive, never-give-in-to-the-RA-beast-attitude, many patients have been able to step up out of that wheelchair and walk, dance, socialise, work and live abundant lives again.

I should know because I am one of those"patients". Oh and we're not too comfortable with being called patients; Superheroes or Heroes would do just fine, thanks!

Fast-forward another 4 years and I'm on the dance-floor again! Major milestone, super superpower!! And I won a dance competition doing a Samba, ten days after being discharged from hospital because of a flare-up.
Trixie 2 - 0 RA! Woop Woop!! Celebration dance!
Me doing the Samba! Check those swollen,painful knees bringing it:)

This is RA Trix with Trixie...living with RA and overcoming the disease one day, one week, one month and one year at a time. I'll try my best to regularly post the best tricks to live happily with the chronic beast for all my fellow Rheumies!

Especially for my South African Rheumies suffering in the cold weather:
You know you have RA when...
You can predict the weather changing better than your TV weatherman just by the aches and pains in your joints:)