Thursday, March 28, 2013

My heart is full

Yep, I take terrible selfies too when I get an awesome crane brooch for free, doesn't everyone?
Deciding to go to the inaugural Big Hearted Business conference last weekend was one of the best decisions I have made in my life thus far. I left it so inspired, brimming with ideas and reignited with passion for this cause that I care for so deeply. I can't wait to share more with you all, but at the moment it is still a little overwhelming. So much to process. While not all responses to my endometriosis awareness campaigning at the conference were positive (there were a few people still peddling the "you just need some spiritual healing, it's a manifestation of something wrong in your life" bollocks), there were a lot of women I met who had endometriosis (you're bound to at a conference of 200 women! 1 in 10, 1 in 10!!!) and were thrilled that I was shouting from the rooftops about it.

My mum and granny are also visiting me this weekend, and I've heard some good work news, so basically after a lot of hard months, I feel like I'm getting the passion up again. Watch this space!

Let me leave you with this quote, which I hope will convey how the conference inspired me:


“TELL ME, WHAT IS IT YOU PLAN TO DO WITH YOUR ONE WILD AND PRECIOUS LIFE?”
― MARY OLIVER

Monday, March 25, 2013

Mexican Superbowl

The Big Hearted Business conference on the weekend blew me away. It was life changing and so exciting to be a part of. I'm seeing big things in the future for it and me. I'm currently too shattered to write in any more detail about it, but don't worry, I'll get to it later (try and stop me)!

Instead I'll highlight a recipe that I tried out tonight (with my alterations), created by the first speaker of the conference, Kemi Nekvapil. She is a champion of raw food and has so much zest for life, it is contagious. I made this and her green smoothie recipe tonight when I got home from the airport. It is so delicious, flavour-packed and filling. I can't recommend it enough! Seriously. Try. It. Out. And check her out - I got her DVD, but she has an ebook of recipes too, or you can just check out her website for some recipes.


Mexican Superbowl Salad
Serves 2

a splash of olive oil (around two tbsp, but I just guessed)
juice of half a lime (I used a whole lime because I'm just that wild)
one tbsp red onion, finely chopped
one clove garlic, crushed (I used half of one of my massive organic ones)
quarter habanero chili, deseeded and finely chopped (I used one bird's eye chili and it was super spicy)
one cup cherry tomatoes, halved
one corn cob, chopped raw off the cob (I used two, I couldn't get enough)
half cup capsicum, finely diced (don't like it, so I didn't use it)
+ one carrot, grated + (I added this in place of the capsicum)
one avocado, diced
one cup macadamias, roughly  chopped (again, I didn't add these because I didn't have them)
large handful fresh coriander, roughly chopped

Combine the first five ingredients in a bowl and mix well. Add the rest of the ingredients and combine, being careful not to mush the avocado too much. Try to restrain yourself from eating it straight out of the mixing bowl with a spoon (guilty!). Will keep for two days in the fridge if you can restrain yourself.

A note - don't be scared of eating raw corn - it is surprisingly tasty! Seriously, I don't know why people even bother cooking it when it tastes so good raw. Can't believe I had never tried it before. It's funny how I swear I've made a salad like this for myself before, but somehow it just didn't taste as good last time. Must be the corn!

Enjoy!

Thursday, March 21, 2013

Thankful Thursday

This is pretty much how happy I am at the moment. Also, this show and this scene makes me happy. via
Lots of exciting things are happening at the moment. On Tuesday I may have gotten so excited that I flailed on the spot as fast as I could until I wore myself out. So I thought I'd share the love and tell you about the exciting things happening lately:

Oh yeah, I'm going here. via
Exciting travel plans!

Today I got some leave approved from work. That was the last step before booking flights to make my amazing winter get-out-of-Canberra-trip a reality! So the plan is now to go to France (visit brother who is on exchange there at the moment) Italy, England & South Korea (Mum is going to a work conference there and says I can stay in her hotel room for free!) with my Mum. With the current (yet to be paid for - soon!) flights we'll be landing in London on my 25th birthday. We're going from late May to late June. SO EXCITED.


Kind family friends + an exciting conference + a day off

A family friend is letting me stay at her place this weekend while I'm at the Big Hearted Business conference - this is going to save me about 300 dollars in accomodation so I am very thankful! I'm also super excited about my day off on Monday to explore Melbourne and do some op shopping. It'll be awesome!


100 years of Canberra

As this year marks the 100th anniversary of Canberra, there are a lot more exciting things going on than usual. It's kinda like March in Adelaide, but all year round. Tonight I'm going to see some caberet with some Adelaide transplants in the Spiegeltent, all part of the extended festival for 100. There was also two pretty awesome fireworks shows in a row and a bunch of little events. Canberra is buzzing!

Old friends

Speaking of Adelaide transplants - I bumped into an old friend at the supermarket last night. It was so lovely to talk to someone who knows your whole history - I don't have too many people in Canberra that know beyond the last couple of years.

Windows 7 upgrade + OneNote

We just upgraded our computers at work to Windows 7 and it amazing! (We were on Windows 2003 before). I have also just discovered OneNote. It is the answer to all my work prayers. I have the same feelings about it that I did when touch screens were invented. It just makes so much sense and makes everything a thousand times easier!

Lovely neighbours

This afternoon (while it was raining), my neighbour had the kindness to stop her car on the way past, get out, knock on my door and tell me that I had left my car lights on. Considering my car lights drain the battery in about an hour, I was extremely happy that she took the effort to do this!

Girls

I love this show (I just watched episode 9). I've deliberately not watched the season finale yet because I don't want to have to wait another however many months until another episode. I'm so happy that a show like this exists that exposes the things that people don't talk about, and all the awkward bits in life.

Visitors

My granny and Mum are coming to visit over Easter, and I also have friends planning on visiting later this year. I've already had four new visitors this year (by the beginning of March!) which pretty much doubled my previous record in 1/6 of the time. So this year is good for visitors!

Blatantly stealing this idea off the lovely Samara.
Check out her blog:
The Secret Life of Samara

Wednesday, March 13, 2013

Diagnosis endometriosis: one year on

My mum and I, four days before I was diagnosed with endometriosis (at WOMAD!
Today marks one year since the laparoscopic surgery where I was diagnosed with stage III endometriosis. It feels like it an eternity. I feel like a completely different person to who I was a year ago. Back then I thought the surgery would fix me and "cure" me of endometriosis, and that it would only take me a week to recover. To say the least, I have learnt a lot since then.

My heart goes out to all the women and girls out there that learn today that they have endometriosis. I pray that they have comfort in the knowledge that there is a name for what they have been feeling, and there are some treatments that may help. I hope they also find comfort in all the other women out there, particularly on the internet (check out my blog roll on the side bar), who know exactly what you are going through and wish only the best for you. Let's not drag each other down with negative comments and criticisms, but support each other instead. We know most intimately what each other needs anyway.

If I could tell my freshly diagnosed self anything I would say:

  • Trust your body, and don't let any surgeon or doctor convince you not to. Only you know what you are feeling. On that note, ditch your gyne and GP now - there are much better doctors in your future.
  • You are not alone. Do not underestimate what meeting other women with endometriosis will do for your sanity. Blogs and facebook support groups are pretty awesome too. Your family is pretty helpful too!
  • Don't be too hard on yourself.
  • Let yourself grieve. Books help.
  • You might not be able to have kids, but that's ok, you might too. Better to make peace with it now either way.
  • The pain won't completely go away, and it will be difficult to adjust to the fact that you are most likely stuck with this disease forever (or at least menopause), but at least you know what you're fighting against now, and that is valuable knowledge.
  • If people don't make the effort to be there for you as much as you are for them (on the whole), they're not worth it. Your time is precious, even more precious than it was when you were healthier. Use it wisely. Don't invest in things that don't give you a return.
  • Oh yeah, and listen to Clare Bowditch. She makes everything better.

Sunday, March 10, 2013

Share your story

via

Maybe all the spamming got through to them? I'm SO excited!

Thursday, March 7, 2013

Let's get physical!

via
I'm not talking about Olivia Newton John's kind of physical.

I'm talking about the physical effects of endometriosis. The things that made me think that there was something wrong with my body, the things that drove me to go see a doctor (time and time again).

So what were the things that made me front up to the local surgery?

1. Pelvic pain (cramping) for up to a week before my period, which was not relieved with over-the-counter painkillers and a hot water bottle.
2. Cramping so bad on the day before my period, and the first day of my period that I could barely walk/sleep/do anything.

These symptoms got progressively worse as I got older.

There's a few more symptoms I have realised are due to endometriosis since my diagnosis.

3. Fatigue. (While I was definitely aware of this before my official diagnosis, I had no explanation for it and didn't realise endometriosis could cause it.)
4. Random stabbing pains in my pelvic area, at unpredictable times. (If been around me you've probably seen me stop and regain my composure because of these.)
5. Diarrhoea/constipation depending on how my gut is reacting to the endo.
6. Heavy periods (I didn't realise that mine were classed as heavy, I thought it was normal to bleed that much.)
7. Flank (lower back) spasms with severe pain.
8. Bladder pain (when it's full, when it's emptying, after it's empty, when it's slightly full, you name it.)
9. Severe bloating around my period.
10. Nausea

I have also experienced extra symptoms (and although some are mental symptoms, they do have physical manifestations - eg lethargy, insomnia, heart palpitations, anxiety attacks) at least in part linked to treatments I have had for endometriosis.

11. Depression
12. Anxiety
13. Weight gain
14. Breast tenderness & growth
15. Spotting
16. Impaired immunity

So, physically, you can see that endometriosis is not "just bad period pain"! This is not a definitive list of symptoms, just the ones I experience.

Linking up with A New Kind of Normal for Blogging for Endometriosis Awareness.

Wednesday, March 6, 2013

Endometriosis Awareness Month

via
This month is Endometriosis Awareness Month. 

This March also marks the first anniversary of my diagnosis and laparoscopy, and potentially the beginning of my younger sister's journey as she is currently being investigated for endometriosis.

I get upset thinking that my sister might have to go through the same crap I've been through, the same pain, fatigue, misunderstanding and dismissal from health practitioners and other people. The same uncertainty.

You know what I think the number one issue for endometriosis sufferers in general is?

It's not the pain - although for some this can prevent them from working or leading the life they want to lead.

It's not the fatigue, or the nausea - again, you learn to deal with these things when that is your life.

No, all of these issues are ones that we find our own way to cope with most of the time, although sometimes we cannot overcome them.

No, I think the biggest problems are the unseen effects. It's the self doubt and rock-bottom self esteem that sufferers experience after years of denial and dismissal from health practitioners. It's the feelings of uselessness when you can't do the things that other "normal" people can do, because you have an invisible war going on inside you that others cannot see, and you are so tired. When you have to re-assess your dreams because maybe your body just isn't capable of doing those things. For some women this will include the news that they will not be able to have their own biological children. For other women, it will be the realisation that maybe they can't pursue a career that they wanted to because their body cannot handle it. It's the loss of intimacy in relationships because the thought is too painful. It's the feeling like you are crazy because your boyfriend says that you can't possibly be in that much pain, and that you should just get over it. It's the events you miss out on because you can't get out of bed, or if you can get out of bed you're bleeding so much that you will most definitely bleed through that super tampon on the 2 hour beach trip. It's the monthly bedsheet bleaching because the pad leaked again, even though you invented a double pad contraption this time and it was so heavy it still got through. It's the awkwardness at work when you have to explain your repeated absences to your middle aged male manager who thinks periods are gross. It's the jobs that are lost because of the absences and misunderstandings. It's the defeat felt when trying to explain that endometriosis is not necessarily "cured" by pregnancy to people who insist that "That's what fixed it for my cousin/best mate/neighbour/hairdresser/sister-in-law!" It's when you feel like all your efforts are futile when scientists spend their endometriosis research money on judging whether women with endometriosis are more "beautiful" than the rest of the population, instead of trying to stop this damn disease. It's the days you struggle through work trying to concentrate and act professional when all you want to do is curl up in a ball and cry.

It's easy to get disheartened when living with endometriosis and trying to spread awareness.

So what's my ultimate goal?

I'm not asking for a cure (although that would be nice);
I just want the day to come when women are taken seriously when they visit the doctor with pelvic pain; when there is enough awareness in the community of endometriosis that women do not assume that having to terrible pain and fatigue is normal; when sufferers do not have to explain themselves.

*Disclaimer: I am not saying at all that the pain, fatigue and other symptoms that come with endometriosis are little things. They are not. There is still no effective treatment for endometriosis. Endometriosis can significantly affect lives to the point where women are rendered immobile or other organs (such as the bowel or bladder) are invaded with endometriosis to the point where they lose functionality, causing further health complications. However, these symptoms are magnified ten times over if the patient is constantly trying to get their condition taken seriously. 

Linking up with A New Kind of Normal for Blogging for Endometriosis Awareness.

Sunday, March 3, 2013

We did it!

Today was the ActewAGL Women & Girl's Fun Run/Walk. A few weeks ago I rallied some of my friends together to make a team to represent the Canberra Endometriosis Network (CENTS). While the fun run is mainly to support ovarian cancer awareness, the team with the highest number of runners would win money to go to the charity of their choice.
Thalita power walking towards the finish line
I had a really good response to the call - many of my friends wanted to join in and support the cause. Unfortunately it turned out to be a bad weekend for many of them, but it's good to know that there are people out there that are interested!

It was also great to hear that entering a CENTS team in the fun run started a lot of conversations about endometriosis with my friends who were participating. Whether they had endometriosis or not, it is so good to hear that even more people are finding out about endometriosis, and it's becoming less and less of a big secret every day.
Lara & Olivia gleefully finishing
Sunday morning rolled around and we all donned our yellow for endometriosis awareness. My goal for the run/walk was to do 1 min run/1 min walk intervals. However, a friend running with me pushed me to run the first 1 km, and then we figured we might as well do 2 km, and by then I just wanted to see if I could make it the whole way.
Go yellow!
...and make it I did! Except for a couple of points during the race where I had a 20 m stint of power walking, the rest of the time I jogged, and I actually sprinted for most of the last km (which is why I was there at the finish line to take photos of my power walking friends).
Canberra Endometriosis Network represent!
I never would've believed that I could've done this even 3 months ago. I'm so proud of myself for doing it. To tell the truth, I got quite emotional towards the end of the run, just so happy to see everyone cheering you on, supporting you and wanting you to do your best. It's such a great environment. I'm sure to seasoned runners, 5 km is peanuts, but to me it is a big achievement. I look forward to the day when 10 km is my regular run.
The whole gang
I'm hoping to make this an annual event and have T-shirts, sweat bands or capes made up next year. This year it was enough to just get a group together. It was particularly poignant for me as today was not a good pain day for me. Kind of ironic I guess, but it's good for me to see the progress I've made in the last year. If I had had a similar day of my cycle last year I wouldn't have been able to get out of bed from the pain, while here I am running 5 km! Between the surgery, diet and exercise, something must be working for me. It's not gone, but at least I can function a lot better. (Disclaimer: this run was brought to you with the help of tranexamic acid, Ponstan & Panadol, so I did have a little help in the painkiller department.)

Linking up with A New Kind of Normal for Blogging for Endometriosis Awareness - Yellow Shirt Day Link-up.
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