fiji and tattoo ponderings

Went to fiji for a couple of weeks It was fantastic as usual. Went for a couple of scuba dives which was for medicinal purposes for my leg of course. lol

Leg didnt cope as well as it did last time i went there but i think i didnt dive a as much so that may have had something to do with it. I did however walk around the pool doing warped laps a reading my book for hours on end which was great for my leg and very relaxing. i chose to wear my old compression bandage in the water on all but one day. i even braved bikinis and my brace - oh yeh, now thats sexy haha, was quite liberating in a away though. still love my baggy boardies at heart.

got a heat rash and some bites on my bad leg big toe. got it down eventually, suppose these things cant always be helped though unless i wear  full shoes in paradise.. no thanks :O)

i highly recommend a few cocktails to help with the pool time and wearing a garment on public too hehe

on the final night i went to indian night at the resort. I got a henna tattoo of the real tattoo that i want on my foot (decided against the side of my stomach) and now im even more keen on getting the tatto. After reading so many articles and web posts im in two minds about it and dont know what to do. Dont want to regret getting one but also just like doing what i want, theres only so many times i can get it done in henna. will keep updated on my choice..

xo

Day by Dayness

There is often aching heaviness, sausagey toes, sore/redness behind the knee and the list goes on.

On a day to day basis lymphoedema can be very tiring.

Everyday I’m thinking, I have to massage 20 minutes a day, moisturise, can’t get sunburnt, wear my compression garment. At work and for my career, cant sit down too long, can’t stand up too long, its always on my mind.

I’ve been sooo annoyed while trying jeans on, finding appropriate clothing, buying shoes or pants and then not being able to fit in them when I’m having a  ‘fat leg day’.

There have been times when I’ve been getting ready and ended up sitting on my bed in tears not wanting to go out with my friends anymore because I’ve had enough.

I’ve had shoes, compression garments, snowboard boots, pants, bridesmaids dresses, socks all adjusted to fit my leg.

Sure its gotten me in trouble before from lymphoeseals, blisters from new boots, too much partying, been bitten by insects, being in the sun too long. I had tendonitis after a concert once from standing on the concrete dancing all day, that one got me in a bit of trouble.

Despite all this I have been on stage dancing, backpacking, travelling, snowboarding, skydiving, hiking, wake boarding and my newest hobbie which I think is just perfect for lymphoedema….scuba diving

You can’t let Lymphoedema always run your life otherwise you may resent it even more.

Hot humid heat and big crocs~

Just got back from an amazing holiday in Darwin, beautiful sunsets, bars, boats and BIG crocodiles!!, only problem was the temp was about 35degrees and very humid each day!

Thought i'd be ok with some of my cotton compression garments but they just didnt seem strong enough luckily i had back ups haha.

Despite being in the pool most of the time, it wasnt that refreshing, the heat had warmed the pool up, just like swimming in soup! the daquiris did hep me cool down though!

I can only imagine what my leg would have been like if i hadnt have swam at all though.
 We did a lot of site-seeing which was great, made sure i had some great runners(aasics) for the day we walked a lot. I also have a knee length garment for when my ankle is extra bad so i put that on sometimes and it helped to contain the size over the top of my full length garment.
I did get heat rash at the end of the holiday but only on my arms and bad leg, suppose it had something to do with the sweat and the stocking absorbing?

Suppose dancing in a hot nightclub all night wouldn't have helped my caude - but hey you've gotta live right? The next day was spent in the pool surprisingly haha.
I did pump up my iphone tunes and go for a dip one of the days and was happy to find a jet that was just the right height for my leg. I had a boogie then massaged it in the pool while also getting a massage form the jet, worked well! Then i elevated it in the air-coned room before heading out again.

Showering in the humidity was a bit of a problem sometimes when there wasnt enough air-con and it felt like my leg would never dry! had to really work at getting my garment on and making sure there were no ripples to cut in anywhere. I invested in a light weight short beach dress just for when i was walking around to keep my legs cool and make it easier to put my garments on when other people were around. Was sorta hoping somone might ask what was wrong with my leg so i could make up a really cool croc attack story haha

On the last day i kept my old stocking on all day, so i could get in and out of the pool and didnt have to worry about my garment all the time. Sometimes have a wet garment can be chaffy so you have to be careful, but i think it was fine for a day.

Flight home was ok, got the bulk head seats which always help with a bit extra leg room, made sure i had plenty of water to drink. Day after i got home i found a local aqua aerobics class which made my leg all wobbly and awesome - got a bit excited about that!! Will put more on my aqua class trials soon.

Might have had a rough time with my leg but not worth missing a great holiday for. Some of my mates even had a giggle at me for hoping that if a crocodile got me on the tour that it atleast bit off my big leg! Luckily no limbs were taken and the crocs were fantastic (5metres long!!) :O)

Map it

Lets get Lymphoedema on the map

Lymphoedema doesn’t seem to be on the map. Some things I have come across are scary and annoying.

·      GPs not knowing what Lymphoedema is, me having telling them what I need to do instead of the reverse.

·      Trying to access a professional who knows about Lymphoedema when you feel it is an emergency.

·      Health funds giving you a waiting period and then finding out that the lymphoedema treatments are not really covered under any of their sections.

·      Trying to get travel insurance and lymphoedema isn’t recognised on their list of pre-existing conditions.

·      Going to the blood bank and being rejected until I have a letter from my doctor………………………………….We need to put pressure on the right people, obtain PR to get Lymphoedema on the map.

What I’m asking of you today is for you personally to educate everyone you know and everyone you come across about lymphoedema, directly engage with your networks and what you do every single day, I know these may be things that some of you are already doing, and that’s fantastic and when lymphoedema awareness has increased ten fold we can all look back and know that we played a part in it.

Its up to everyone to be confident, we need to really create resources and look for every opportunity to educate.

Staying positive is very important, the effort everyone puts in now, can help an unimaginable amount of people down the track.

My Story

I’ve had Lymphoedema for 6 years now was diagnosed after 6 long months of expensive, invasive and painful tests, opinions, misconceptions and mistakes. In the early stages I actually was told that it wasn’t lymphoedema.!! Along side this I was 20 year old trying to find out who I am and becoming confident in myself emotionally, physically nd sexually.

I was prepared to be told I would need a risky operation, maybe some difficult years of treatment, but not to be told I had this chronic illness that in my head at the time only ‘old people’ had and there was no cure for.

In hindsight, years before I was diagnosed I had had fluid behind my knee, a lump in my groin, had done the right thing and sought medical advice on both occasions and it was never bought to my attention that lymphoedema existed.

  I found it hard to believe medical advice and diagnosis, how could this have happened when I had done the right things and potentially felt like id caught it in the early stages.

Lets get this bloggy started

Welcome to my first ever blog, where i'm going to annoy you with random information about living life with Lymphoedema.

I want to be famous, I’ve wanted to be famous for about 6 years now.

Only problem is I’m not the best singer, actor, runner, guitarist (even though id like to think I am), I want to be famous, to promote Lymphoedema awareness, involve people, put pressure on organisations, make it easier to live with and educate people that it exists and it is a very real thing. If people don’t know it exists how can they know they could be at risk.

My mum and I have joked that what we need is a celebrity to be diagnosed with primary Lymphoedema, I can imagine the increased awareness and research, not that I would ever wish Lymphoedema on anyone.  Imagine the publicity if Lady Gaga had Lymphoedema!!!!!!! Can you imagine her onstage in her fishnets trying to adjust her garment?!

So you don’t have someone famous writing to you, just a twenty-something girl with primary Lymphoedema, who wants to share something with you.