Monday, 28 July 2014


I am sitting in the hairdresser having some much needed pampering. It's been a while. Sitting gives you time to think and to be grateful for what you've got. My eldest daughter has started back at uni today. She was so excited she walked into the wrong lecture. Oops! My other daughter is being a great support for her sister, driving her to uni as she is still unable to drive herself. It's another job for her on top of her busy acting course, but sisterly love wins out and I'm grateful. I've obviously done something right with my daughters.

I've been also catching up on some of the posts in the Cowdens support groups I belong to. The repercussions of this condition are different in every person and you can see that in the posts. The common factor however is that we are diagnosed with a condition which nobody really knows much about.

Imagine if you were diagnosed with a particular condition and after this diagnosis you were told that basically we don't know much about it. So it's up to you to read up on it. It's up to you to advocate for yourself and it's up to you to work out a monitoring schedule. You don't know what to monitor. You don't know where to go and you come face to face with people who are not entirely sure whether you've made the condition up or not. That's what it feels like to have Cowdens syndrome.

Rare diseases websites rarely if ever mention Cowdens syndrome. Some would say it's a new condition but it's not. It was first described in 1963 and named after the surname of the patient presenting with the condition. So that's 51 years ago and still patients like me are having to rely on Dr Google or Dr Wikipedia for guidance. Not good enough really is it, but what can one do? At least through my blog I (at least) can spread the word about this genetic demon, which is messing with the lives of many.

So haircut and colour done and lookin good if I say so myself. But I'm in a cranky mood now thinking about what I just wrote and I know why. Firstly my doctors are playing handball with me and it's getting on my nerves. " Ring me if I haven't rung you in two weeks". The chances of a doctor ringing you when he says he is going to is 0%. And sure enough no call. No surprise there. And rest assured that if I ring he'll be on holidays or something like that. Grrrrrrr

Secondly, all my life I have suffered from allergies and food intolerances which seem to be typical of people with CS. My younger sister is the same and is vigilant about what she eats. I have not been as vigilant because apart from cows milk I have never really pinned down what exactly causes the rashes, the inflammation, the wind pains etc. 

Recently I have been caught up with reading about the "Paleo" way of eating. This movement is sweeping the country, on the coat tails of a celebrity chef. A lot made sense and I became fascinated by stories of people with health issues who were following this way of eating with huge success. Unfortunately, due to my great love for grain products I did nothing to follow the advice, preferring to read and not put in place. I am after all a Home Economics teacher so I shouldn't be fascinated by anything other than the food pyramid should I?

And that's how it was till one night recently when I felt bruised from inside and in really severe pain. Something had to change! I thought I would give a modified version of Paleo eating a go. Modified because I kept some dairy and porridge in the diet instead of strictly no dairy and no grains. This goes against everything my training has taught me and everything I teach in a classroom, but I thought I'd try it for one month and go from there etc. So far I've done one week and even in that one week I can see changes. My skin glows. My watch band is loose thanks to loss of bloating. I have energy and LESS pain. BUT ...and this is a deal breaker I'm still sleeping badly. Early days yet.

So getting back to the cranky bit. A new article arrived on my iPad while at the hairdresser. It basically should be called "Australian dieticians fight back and slam the Paleo way of eating". Suddenly my pride at having got through week 1 was gone. Suddenly I felt like an excuse for a Home Economics teacher. And worst of all I feel that my first real effort to do something for this aspect of my health has been sabotaged. I am confused as to which side I should be on...really confused. 

So thanks. I am now cranky. I look good but I'm cranky.
What's a girl to do?

Till next time xxx...


  1. hahaha :D A home economics teacher beat Australian researches at diagnosis. Great! :D

  2. BAHA. I thought I was the only person who referred to Google as "Dr. Google". :) BRILL.


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