This video is a bit cheesy, but I like it: We are stronger.

My current exercise regime is going to the gym about three or four times a week for a mixture of weights and cardio, and going for a walk/run about twice a week. I’m nowhere near as fit as I’d like to be, but I’ll get there. Once regular classes start back at the gym I’ll include spin, Pilates, yoga and pump classes. My rough goal is to become one of those people who when I see now I think, “Ugh, fit people.” My more specific goal is to run 8km by Mother’s Day and be able to do a full teaser in Pilates.

So in 2011, for the first time in a few years, my main reason for going home was not to see my endocrinologist, but to see my gyno. I saw them both in December last year – cortisol levels are completely, totally, wonderfully normal, and I would have to wait for results from my gyno. He emailed me a couple of days to say that everything is normal. Hooray!

‘Normal’ is such a beautiful word.

It seems awfully fitting. There was one doctor appointment I was walking away from, when I was feeling frustrated and angry, and that song came on my iPod. I don’t associate that song with depression, but with physical problems with the body, and I think the song works quite well for both.

I have one hope for 2012: that my body be normal and boring, and everything ticks along the way it’s supposed to without me even noticing. But just in case, here is a reminder to myself: you are still alive, and that is something to be very happy about.

***

Tomorrow will be exactly three years since the stroke. I remember being asked soon after it happened if it had changed me (besides the obvious inability-to-move-my-left-side, I mean) and my answer was always ‘no’. Before it happened, I was always pretty optimistic and happy to be alive. And it honestly felt like the stroke didn’t really affect my outlook on life *that* much.

Maybe it just needed time to sink in. Kind of like marinating meat – the lessons needed time to be fully absorbed. When I look back now on the past three years, I can see a somewhat large change, namely the willingness to take risks and do the spontaneous. I used to be terrified of the unknown, and preferred to let life happen rather than do anything particularly proactive.

That has completely changed, thanks largely to two things: almost dying, and travelling. The past three years have been the best years of my life because of my newfound ability to do things I was previously too scared to do and ask questions I would previously have been too afraid to ask.

I went to Paris the first time because I was backpacking around Europe for three months, and it felt as though I couldn’t be so close to the City of Lights and the City of Love and not go. It would not have been a proper trip through Europe unless Paris was there, somewhere, on the itinerary.

On my first couple of days there, I did the obligatory tourist things like go to the Eiffel Tower, see the Louvre, and go on a walking tour. I was there for three days, and on the third day I contemplated going on a day trip out to Brest. My friends and I play Ticket to Ride Europe (a board game) a lot and we are always amused when someone manages to build a route to Brest (we are a group of 20-somethings with the maturity levels of teenaged boys). I then thought spending eight hours on a train to take a photograph of a sign is probably not the best use of my last day in Paris.

Instead, I went to all the English bookshops I could find, ate macaroons, and had a grand old time. That night, I met the person who would become the reason I went to Paris a second time. He sat down next to me in the courtyard at the hostel we were both staying at and said hello. We ended up talking a lot, about a lot of things: which is the correct side of the road to drive on, ‘real’ science versus ‘social’ science, TV shows, travelling, studying, the recent elections in Denmark (he’s Danish and I’d just been to Copenhagen), music, and probably a host of other things that I don’t remember.

We carried on talking all the way to the Eiffel Tower. We went there even though we’d both been there both during the day and at night because the Eiffel Tower at night is magical and one of the best sights I’ve ever seen (it’s up there with experiencing Victoria Falls on a micro-light and seeing the sunset on a beach at Llandudno, Cape Town).

It turns out that not only is the Eiffel Tower quite amazing at night; it’s also a lovely setting for a first kiss with someone you quite like. There was more kissing than talking, and it is one of the most memorable first kisses I’ve had. I left Paris the next day, not sure if I would ever see him again, but knowing that I wanted to.

When I was in Vienna two weeks later, I sent him an email asking if he meant it when he said he wanted to see me again. It would have been really easy to have just left it at that one night and one kiss, because it was the sort of thing that happens on the road. But I liked him, and there was one way that I could see him again before I flew home to the other side of the world. And I have learnt in the past three years that asking isn’t *that* scary. If he said yes, then excellent, I would see him again. If he said no, then at least I could know that I tried. In case you skipped the first part of this post: he said yes. I went back to Paris and spent three more days with him. They were amazing and going back to Paris is one of my favourite experiences from travelling.

I’m now back home in Sydney, and I don’t know if or when I will see him again. I would very much like to, but I have also learnt in the past three years that there are so many things you can’t control and life is not a fairy tale. Life is not one neatly structured story with a guaranteed happy ending. It is made of moments, experiences, memories and the people you meet along the way. It unpredictable, unfair, heartbreaking, funny, joyous, and the most valuable thing I have.

The reason I’m writing about this particular moment in a blog that is primarily about my fucked up body (and don’t worry, there will be more medical updates to come. Though I’m hoping those will be of the “my body is boring and my cortisol levels are normal” variety) is because it seems to encapsulate the biggest change in my outlook since the stroke: the willingness to take more chances. I am grateful every day for the lessons I have learnt, the people I have met, but most of all for the fact that I’m still here.

I’ve also made appointments to see my GP, gyno and endo, so it feels like I’ve finally stepped back into my old and normal life.

As an aside, I think word must be spreading about my awesome endo (the one I call “The Best Endocrinologist in the World”) – I couldn’t get an appointment with him until January! Next year! It means bringing out the 2012 diary! Wow, where did the year go.  

The longest walk

The walk from the doctor’s office is always longer than the walk there. The walk to the doctor’s office is filled with hope and anticipation, and a thought that in a few moments life will change. Things will be better and problems will be solved. The walk away from the doctor is when she learns that things won’t be better and problems will remain the same. She was naive to ever think that things will be fine.

She is angry at herself because she is still alive. She has a fully mobile body, she is able to communicate and understand language, and she is able to perform every function of daily living independently. She is not being tortured or held hostage in a war-torn country; she is not lying in a hospital bed with a terminal illness. Life could be much worse and she is still lucky to even be here.

And yet, she wishes that things were just that little bit different. She has resentment for every woman whose body functions normally even though she knows that it is irrational and she shouldn’t feel that way. She just wishes she had what they have.

The worst thing is being told that there are no answers. The doctors do not have the answers; they themselves do not understand what is going on. The tests and the scans show everything as being normal. They tell her to be patient and wait, and she will do this, because she has no alternative. The patient has to be patient.

She hates it and thinks that it is unfair. Things should have stopped by now. They should have been fixed. Everything should have been fixed. But life is unfair and there are so many people worse off than her, and she gets angry all over again.

And that is what the walk away from every doctor’s office is like. Wondering how much more she has to take; wondering how much more she can take, and anger at herself for even thinking like this.

Also, if you happen to be male and/or squeamish: sorry.

I have never had regular periods without the help of drugs. They started when I was ten and a half, and up until the age of twenty-two, they were a constant in my life. As in, they were there every single day, without a break. When I was twenty-two, a gynaecologist (different to the one I see now) diagnosed me with Polycystic Ovarian Syndrome (PCOS), told me I needed to lose weight, and put me on the contraceptive pill to regulate the periods. This was towards the end of 2007. When I saw him a few months later for a follow-up consultation, he asked me why I hadn’t lost weight like he told me to, but in fact gained weight. (I was about 56kg when I first saw him, about 58kg at the follow-up.)

I didn’t go back to that gyno, and the Pill seemed to do the work it was supposed to. And then in December 2008 I had a stroke, and will never be on the pill again. There are two hormones in the pill that I was taking, and one of them was one of the contributing factors for the stroke.

After the stroke, my periods stopped for a few months. Then they began again, and it was just like they used to be. Oh, I should also mention that my endo said I didn’t have PCOS and that it was Cushing’s that was messing up my periods. During one consultation with my endo, this exchange occurred:

Me: Remember how I just went through hell to get my body fixed?
Endo: Yes?
Me: It’s not fixed.

My endo did more blood tests and in the end said to me that it was beyond his level of expertise and he referred me to a gynaecologist (the one I currently see). The new gyno scanned, probed, prodded and tested, and couldn’t work out the problem. His solution was to put in the Mirena, a little plastic device that is placed directly into the uterus and releases a little bit of a hormone (not the blood-clotting one) every day. It’s a method of birth control and it is also a way to regulate periods. In about 70% of women, after they have the Mirena in for a year, the periods stop completely (if I recall correctly).

I had one put in on the 27th of November, 2009 (which coincidentally was one year since the Cushing’s surgery). And as is typical of my body, irregular bleeding continued in the months following.

By the time I went to my gyno in October last year, the bleeding had stopped. I had an endo appointment the following day (my gyno and endo are friends), and my gyno told me to tell him that everything’s been fixed. At my endo appointment, this exchange occurred:

Me: Oh, George told me to tell you he’s fixed the bleeding. The Mirena’s working.
Endo: He hasn’t fixed it! He’s just shut down the system!

Which is a completely valid point, but I’m not complaining! The Mirena can stay in for up to five years, and my current one has been in for one year, six months, and a day. Updates to come in three and a half years.

Life used to be very stable and predictable, and I liked it that way. My favourite place was home, and I didn’t like leaving its comfort. I knew what I was going to spend the rest of my life doing (well, I had a rough idea of what I wanted, anyway), and who I was going to spend it with. I was very much of the “don’t rock the boat” school of thought.

And then I guess it changed a bit. My shiny new life philosophy is something like this: Dive in. Try everything once. Fit in as much joy and happiness and excitement as you can because you never know when you’re going to die. Don’t be scared. And don’t die wondering “What if?” or thinking, “I should have…”

This new philosophy has resulted in a bit more disappointment, and a bit more hurt, but you know what? It’s been worth it. Oh, sweet delicious life. How I love you.

Two years and a bit ago, when my stretch marks first appeared, I thought they looked terrible. They were big and angry and bright red. I also thought that anyone who ever saw them would also think they looked terrible and would be repulsed and horrified upon seeing them.

Apparently not, though. The first person I kissed after Sam and I broke up was the first person since Sam who had seen my stretch marks (the first non-platonic person, I mean). I remember saying to him that under my clothes my body is really not that attractive, and that Cushing’s had done horrible things to it. He said he didn’t care, and we carried on kissing.

Since that time one and a half years ago, there have been a few more kisses, and a few more men. The stretch marks are still there, though not as red as they once were. None of the men have reacted in a way that I thought they would have two years ago, when they first appeared. None of them were repulsed, and none of them even cared (or at least, if they were and did, they did an excellent job of hiding it).

The sweetest, nicest exchange I had regarding this issue was this:

Me: You know, there are lots and lots of stretch marks still on me from Cushing’s.
Him: Does it bother you?
Me: No, I like them.
Him: Well that’s all right then.

I think I should have given men more credit. They’re really quite lovely.