One More Day!

Hi Everyone,

Hope everyone is happy and healthy? I have been getting ready for my Quarter Marathon. Now to tell you the absolute truth, the thought of getting up at 5 am in the morning and starting the run at 6.45 am does nothing for me (at all) but at times when things are feeling a little daunting little reminders pop up from nowhere to remind me I can do this. I watched the news last night and it was about the New York Marathon (42kms/26 miles long), I am running 10.5kms/6.5 miles (HUGE DIFFERENCE), but the message was the same. There were people their running for their friends who had died from the most horrific illnesses and who had always wanted to run the marathon in New York. I burst into tears (of course) and just knew that the love we have for people who can not be here is so powerful, that these friends who have never exercised, will carry their love in their hearts all the way to the finish line. It made me think that I can do that for EDS - at times very much not my friend, but EDS is the constant entity in my life and I choose to see it as a friend and not a foe. So here is my little message to all of you out their who has EDS in their life, this is what I will be wearing while I run (and walk) because even people with EDS can stand tall and carry this all the way to the finish line with a smile on their face and the knowledge that we are not alone.

Love Rowena X

Every cloud has a silver lining!

Hi Everyone,

I hope you are all healthy and happy. Now I have been on a bit of a new life journey recently. I decided to loose weight as I said before and I am truly feeling so much healthier. I will say that the exercise has made a huge difference to my mind (endorphins ROCK) and I have been feeling healthier, but my arm joints have taken a bit of a hammering. The one thing that I have noticed happening recently is that my ring finger top joint on my left hand actually almost pops out! I will be holding something or just moving my hand and it will happen. The thing that makes me sad is that this in so minor compared to so many of the people that I have been in contact with recently.

It has made me realise how difficult it can be for the many of you with EDS and who have constant joint pain and dislocations. My heart goes out to you as it is debilitating and just unfair. I know that I am all about looking on the 'bright side', and we have too, but I do just want to send this little black cloud out there, to say I am so sorry that you are experiencing this! The silver lining on that cloud is that we are all here for a good time, not a long time, so enjoy the ride no matter what!

Take care

Rowena X

M.I.A................ (Missing In Action)

Hi Everyone,

I have been missing in action due to my computer being sick and needing a whole new hard drive. I have been reluctant to post emails at work as Teaching in schools means incredible Internet security and it basically shuts you down if the system is not happy with the web page you are on. So I have been a frustrated non-Internet user. The really funny thing is, is I also lost my cell phone and started to think that technology was no longer my friend. Which then made me think of how reliant we are on technology. I was almost going to take up the art of 'Smoke Signals' it got so serious there for a moment. I did manage to check me emails at friends over the many weekends I was without my laptop. I was really happy to receive messages from 4 new people who have or have suspected Classic EDS and they just dropped me a line to say I was not alone. Which brings me to the tragedy of MJ's Death and his famous song...."You are not alone", soooo sad; I really know I am not alone, thanks to all of your comments. I feel so blessed that I started this Blog and it was such a treat today logging on and seeing my World Cluster Map.......... "Hello World and Hello to all the gorgeous people out there who have dropped by to take a look at my Blog. We are not alone and I am so happy to say a lovely lady from the USA called Nancy just dropped me a line to say "that she hoped I was well".

Well I am really well and fighting fit. Actually I have been going to Weight Watchers and lost a staggering 12 kilos (26.4 pounds). I have joint the gym and also signed up for a 1/4 Marathon in November. I thought, you never know when your body will change, but my body has been behaving itself long enough to see me through to my 40's (fingers crossed). After my extensive research about EDS, I have realised just how lucky I am that at 37 I am still walking without pain. I really want to show my son Tristan that while our bodies are strong and healthy that we can accomplish many extraordinary things in our lives, whether that is to run a 1/4 marathon or climb a huge mountain, it is the fact that we can move without pain and we can run, jump, dance and skip, we are the lucky ones (as long as we don't trip up on concrete and need a million stitches). My baby is 12 and is such a teenager. You won't believe it, he is as tall as me. It happened 3 weeks ago. For 6 months, every morning as we brushed our teeth, he would stand next to me and would say "I'm just about as tall as you Mum". I would always reply...."NOT YET". Well 3 weeks ago I almost had a heart attack, he actually was as tall as me. I could not believe it.

Throughout 2009, I have been on a healthy 'Life Style Change' and I know he has been watching me. He has been asking about our bodies and how to add muscle as he wants a '6 pack', (it's an Arnold Schwarzenegger thing). I am so pleased he is looking at a healthy future now and that he has a healthy mother with EDS to show him we can be as strong anyone, we just have to be a bit more careful.

I would love to keep hearing from you so keep on sending me comments. "I'm Back.......thank goodness for the Internet".

Rowena X

Is Anybody Out There?

It was so great getting someone responding to one of my posts. I was lucky enough a few weeks ago to have a lovely lady email me about getting pregnant with EDS. I felt really great being able to share my pregnancy and to put her heart at ease about getting pregnant. I was so happy to know that after reading my post and talking to her doctors, she has decided to have her baby after all. I seem to have so many people looking at my blog, but at times I felt like the only person in the world with EDS, but it was a total buzz to have someone contacting me! Then only a few days ago another woman simply said...."I know how you feel" and those few words made me smile and stopped feeling alone. 'A shared concern or worry if halved', or so they say, so let's get talking and sharing ideas so we have a support network who understands.

I'd love to hear from anyone........anytime!

Rowena

Dearest Oprah

Dear Friends,

Now I thought that maybe because EDS is still a very quiet entity, maybe going to Oprah to hear our voices is a great place to start. Here is the letter I sent:

Dearest Oprah,

My name is Rowena Lee Brewer and I am from Auckland, New Zealand. I love your shows and I really like the DR Oz segments. I have a genetic condition called Ehlers Danlos Syndrome. I have started a Blog in New Zealand http://edsinnz.blogspot.com and I am amazed at how many people (who have read it) are from America. EDS is HUGE in America and I just thought as it can actually be undiagnosed for years, that maybe a small mention of the several different types may be a great way for people who may have this, to understand it. I have Classic EDS and so has my 11 year old son Tristan. We are so lucky compared to some people affected by the other types. I know overall this is a story about a very small part of the population, but awareness of any condition makes such a huge difference to the people who are affected and a voice can shatter the silence of living in isolation with any genetic condition. Thanks to your voice, this world has become a much more informed place to live!

Love Rowena

Fingers crossed she hears us!

Love Rowena

x x x x

Clear, concise & positive information!

Dear EDS friends,

I have decided to start my blog entries like this after realising how many people have been checking out my blog! So hello there new friends!

Now, I always take time in the weekends to search the web for some more helpful information for myself, my son and this blog. I have found the best website for anyone who has EDS and wants to share this information with a family member or friends and also for people who have just been diagnosed. Here is the address: http://georgiahealthinfo.gov/cms/node/105606gov/cms/node/105606

I am so impressed with how concise the information is and it is factual without scaring the pants off you. Well done Georgia Health, you have definitely got a 5 star rating from me! Take a look, it's great!

Love Rowena

x x x x


P.S: I had to share this amazing personal fact. My gorgeous baby now has bigger feet that his Mum. He also has the very traditional EDS flat feet just like his Mum too. This was taken on a weekend away in Raglan which is situated on the Wild West Coast of the North Island of New Zealand. The sand is black and full of iron shards.

The Princess and the Pea!

When I grew up there was a fairy tale which I always thought might be about me. 'The Princess and the Pea' was a tale about a wee girl who didn't know she was a Princess. One night she is lost in the woods and turns up at a castle. The Queen somehow thinks she may be a Princess in disguise. So when she is shown to her bed chamber, the Queen has played a sneaky trick and put a pea under 13 (or so) mattresses. If she was really a Princess, in the morning she would feel black and blue from the pea pressing into her fragile skin under all those mattresses. The long and the short is.....she was indeed a Princess after all. Then I realised I didn't really know when EDS was first discovered. If you are lucky enough to ever read any Jane Austen books, there is always a frail, pasty character with a weak disposition, maybe they had EDS. So I have done a bit of research and this is what I have discovered.

Ehlers Danlos Syndrome is one of the oldest known causes of bruising and bleeding and was first described by Hipprocrates in 400 BC. Then Tschernogobow from Moscow published his findings about the fragility of the skin associated with hypermobility of the large joints in 1892. Edvard Ehlers, in 1901, recognized the condition as a distinct entity. In 1908, Henri-Alexandre Danlos suggested that skin extensibility and fragility were the cardinal features of the syndrome. Edvard Ehlers (1863–1937), Danish dermatologist, and Henri Alexandre Danlos (1844–1912), French dermatologist, who separately reported it in 1901 and 1908. So there you are. If you were ever wondering where the name came from or when it was first discovered here is the short and sweet answer!

Love Rowena

x x x x