Other high scores I’m trying to beat:

- Distance rowed in ten minutes at level 10 (currently at 1953m; goal is at least 2000m)
- Distance run (at 9k/hour on the treadmill) before switching to walking (currently 2km; two weeks ago it was 1km. Goal is 5km by mid-March and 8km by May).
- Do a full teaser in Pilates!

25th December, 2008 (23 days after the stroke)

Out of hospital for the day, still alive, no more cushings! And my left side moves!

26th December, 2008

This has been an incredible year. It had some of the best days of my life, and some of the worst.

As I mentioned in my last entry almost a month ago, I had a tumour on my pituitary gland removed. After the surgery, I had a stroke. I’m now relearning everything, like how to walk. There have been bad days, especially when food menus are handed out and I’m reminded that it’s another day in hospital, but I’ve been told that I was really close to being blind or dead, so it’s pretty awesome that I’m still alive.

28th December, 2008

So, I’ve been in hospital for exactly one month today. I was only meant to be in hospital for about five days. But in life, unexpected things happen, and we can’t control everything, or anything! You just have to take what you’ve been dealt and deal with it. There are still things to look forward to every day, there are still things to laugh about and smile about and so many things to be grateful for. Life is still there to be grabbed with both hands and there are still so many things to experience, and I’m lucky enough to still be able to do that. I may have lost the last month of my life to hospital, but there are still many more months to be had. And I’ve met some pretty amazing people in hospital, and learnt quite a lot, so it’s not all bad! Hospital shows you the good and the bad side of humanity. The doctors, nurses, physios and OTs here are all fantastic, and do such an amazing and admirable job.

I would be completely lying if I said I don’t have bad days. I do. I don’t want to be here. I miss home and I miss my life. I wish that the stroke didn’t happen and that my left side is fully functioning. But there’s no point in dwelling on what if or thinking that it sucks that I have to relearn everything, but there’s a big part of me that’s grateful in the knowledge that I will make a full recovery and that I can get my life back.

1st January, 2009

NYE this year was spent in hospital. Sam visited and stayed until 12:30. We played bean game with Karina (another patient), watched the fireworks on tv and hung out in the lounge at D5C.Not how I’d planned on spending NYE, but it was good. As long as 2009 is as good as 2008, it will be a good year. I really liked 2008, though there were some iffy months. But I’m still alive, and there’s still something look forward to every day, so what more can anyone want? 2009 will be the year of getting my life back and trying new things. I am so grateful to still be here, and I’m going to make the most of it. No regrets.

6th January, 2009

What was meant to be a 5 day hospital stay turned into a 1.5 month stay, but no matter, because today, I was discharged and I’m out of there. Yay!

9th January, 2009

I wish the stroke never happened.

10th January, 2009

Two months ago, all I wanted was to have my life back. I wanted to be out of hospital, I wanted to be able to move my left side I wanted to not have to fill in the hospital menu every day, I wanted tedious and mundane to do lists that make up life.

I have that now, and I just feel overwhelmed. Everything takes so long to do, and I’m wondering if I’ll ever catch up on life. My To Do list feels enormous and when will everything get back to my pre-stroke life? Can’t I have a date to countdown to?

But I’m incredibly glad that physio is now something I put off, as opposed to look forwrd to, because there are so many other things to look forward to, and life outside hospital has heaps of other highlights. Holy crap, I love life outside hospital. It’s awesome.

Okay, to do list, bring it on. If I can handle a minor inconvenience like a bleed in the brain, I can surely tackle work, physio, and insurance claims.

13th January, 2009

It’s almost a month and a half since the stroke, and I alternate between being the same as I was before the stroke, and an emotional wreck.

Most of the time, I’m fine and incredibly glad to be alive, and I know I’ll be back to normal and make a full recovery (suck on that, rehab guy who couldn’t promise me a full recovery).

And then there’ll be tines when I really hate this. In hospital, I didn’t really have my normal life, but now I do, and I have things to do, that I was perfectly capable of doing alone before, but now need other people for. And it’s frustrating, and lead me to dreaming up plans to do stuff as though the stroke never happened, like going to Parramatta from Glebe by myself and not telling anyone. Sneaking away from whoever is my baby-sitter at the time. And when I get in those moods, and dream up those plans, I get angry at myself, because I should be grateful for what everyone has done, and grateful that I’m able to walk and be (mostly) autonomous, and then I get in an even worse mood.

Life post-stroke is still pretty cool, but it’s not always a barrel of laughs.

In terms of movement, an update:

I can:
- Walk up and down safe and even stairs
- Get up from most chairs without using arms
- Shower and wash my hair without help
- Help out in the kitchen
- Get in and out of cars without help

I can’t:

- Do up bras
- Go up and down the stairs at our house
- Make the bed
- Type as fast as I used to.

The feeling in my left side is nowhere near as sensitive as it should be, and I don’t know where it is in space half the time, so I keep walking into things. I keep whacking my poor watch into things.

In other news, I’m going back to work next week, which will be fun. Yay, geography and academia!

As frustrated as I am today, I know that things are good. And things will continue to be good. <3 life

20th January, 2009

You heard me, body. Despite still not being pre-Cushings weight, despite being hairier (I suspect thanks to fucked up hormones, something to ask my endo about), despite still having giant pink stretch marks, despite the left side not working 100%, and despite some vision issues (something to ask the neurosurgeon about), I love you, body! More than I ever have! Continue doing an awesome job, please. Oh, and thank you for not giving up. I love my life, so thank you for letting me keep it.

5th February, 2009

All the photos I take now are wonky. I know, I know, things could have been a lot worse, and I’m actually really lucky. …Maybe I can just pretend that all my subjects are leaning to one side? Or that the world is naturally wonky.

13th February, 2009

I love my endocrinologist. He is awesome. I won’t be able to leave the country, or this city, because I may never find a better endo than this one. I had my post-op follow up appointment with him today, and there were several moments that I want to record.

i. The receptionists know me there. All I did today was walk up to the counter and she greeted me by name and told me to take a seat.

ii. My endo was really pleased at how normal I am. He said that he pretty much got simultaneous phone calls telling him I had a stroke when it happened, one from the endo at the hospital, and one from Sam. And he said he felt really bad, because what happened was something that no one expected.

iii. Speaking of unexpected, apparently the type of stroke I had was really rare. He looked up the literature, and there have only been two other cases of this type of stroke happening after the removal of a Cushing’s tumour.

iv. I asked him if he knew why it happened, and he had a couple of theories or ideas:

- There was already a higher chance of this occurring, thanks to Cushing’s, and being on the pill didn’t help.

- The other, more left field theory he had is to do with cortisol levels. I had really high cortisol levels, and bruised really easily. When the tumour was removed, I had NO cortisol, so the blood got a bit gluggy. And clotted. W00t.

v. So we got through the how I am now, and what happened, and then he asked me what drugs I’m currently on. And the following exchange occurred:

Jen: Hydrocortisone, Somac, Warfarin, Propranolol…

Endo: What? Why are you on propranolol? Have you got an overactive thyroid?

Jen: Yeah, they said I might have mild Grave’s Disease.

Endo: Jen! *shakes head*

Jen: What?!

Endo: Only you could come in and add that in. I normally schedule a 30 minute consultation just to go through Grave’s Disease.

Jen: But it’s only *mild*.

Endo: *continues to have an expression on his face as though he doesn’t know what to do with me*

vi. He told me that Cushing’s and Grave’s are completely unrelated, and I would be really unlucky to get both. I told him that’s what the doctor in hospital said too.

vii. He weighed me when I first walked in. Before I stepped on the scales, he said he thinks I’ve lost about five kilos since I last saw him (late October). When I asked him how he knew, he said, “I’m a doctor. And besides, I can see”.

iix. I had bloods done for him last week, and everything looks normal. He’s ordered another set of tests, which I predict will need another 16 tubes of blood.

ix. He said we can sort out the no periods thing later, but the figures for the reproductive hormones look normal. He’s also weaning me off the cortisol now, and told me I could stop taking Somac.

x. He bulk billed me today. He said that I’ve had a really tough time, and I’ll have to see him more in the future, so yay, today’s longer-than-it-should-have-been consultation was free, because my endo is nice and awesome.

xi. When I showed him my stretch marks, he jokingly said that I could hire myself out to medical students as a case study and make millions.

I’m looking forward to my next appointment with him.

***

Today, when I was walking to the bus stop, it started raining. It suddenly stopped, and I looked up to see a guy walking next to me with a box of roses in one arm and a golf umbrella in his other hand, shielding us both.

Not only is there a lot of good left in the world, there is a lot of awesome left in the world.

14th October, 2008

Today was made of all kinds of awesome.

+ I delivered 24 hours worth of urine. Actually, that’s probably not awesome, but it’s not bad. It’s another step of all the tests I have to do this week to find out what’s wrong with me, and I will find out what’s wrong with me and hopefully how to fix it this Friday. The doctors are fairly sure they know what’s wrong, but need vials and vials of blood and a giant bottle of pee to confirm. Delightful.

17th October, 2008

Today could have been a good day or a bad day. I’ve decided that it will be a good day!

So, I found out today that I have Cushing’s Disease. Which is the bit that could have made today bad, but it’s not really. Well, I’m not thrilled that I have Cushing’s, but it’s been suspected for a couple of weeks, and it’s good to know for sure, because it explains a lot of things that’s been happening to my body over the past few months. And now that we know, we can get started on locating the source and getting treatment. Which involves fun things like getting pumped of steroids and having MRI scans and probably having neurosurgery, if the tumour is actually in the pituitary gland (and it’s about a 90% chance that it is). (Cushing’s is where your hormone-producing glands are screwed up and producing too much cortisol. I think.)

But now I know why dieting and exercising is failing and I’m putting on weight rather than losing weight, and it’s not because I’m a lazy, unmotivated, undisciplined giant tub of lard like I’ve been telling myself for the past few months. I have an excuse! So I will continue exercising and eating healthily but also not completely cut out dessert or feel massive amounts of guilt when I do eat something bad.

24th October 2008

I love hospital food. I love how there’s so much variety on that tray, and the surprise and anticipation of lifting the lid and seeing what’s underneath, and I love how it’s something to look forward to because all you’re doing is sitting on a bed and not doing anything. And the food itself isn’t *that* bad. Some of it was actually tasty!

Also, on a kind of related note, I’m a medical freak. Enough of a freak to be shown off to other specialists and an entire team of haemothingys and be discussed with with some really old professor-type endocrinologist, who agreed that I’m a freak. Example: cortisol levels from a 24 hour urine test for a normal adult should be about 10-100mg. For people with Cushing’s, it’s about 800mg. The highest my endocrinologist has seen was about 1500mg. And mine were 4200mg.

It seems fairly certain that I’ll be getting neurosurgery done at some point in the near future (I’ll most likely find out next week), which will involve another hospital stay, which will be awesome because yay, more hospital food! I should bring a camera, for food porn.

27th October, 2008

MRI scan today. Let’s hope they find a massive, obvious tumour!

27th October, 2008 (later)

This morning, I had an MRI scan, which wasn’t actually as bad as everyone was telling me. Probably because I was expecting to be stuck in some metal cage, and it was actually white and plastic. Although after 40 minutes in that thing, I was starting to feel like throwing up would be a wonderful feeling.

It was then off to the hospital to get some blood tests done. The referral I had had a lot of stuff written on it, but I didn’t realise until I got to pathology that I would need 16 vials of blood. Well, I lie. It was only 15. But there were 16 vials used, because they weren’t all full of blood. The reason for that is because my veins are tiny and deep and incredibly hard to get blood out of, and they also used needles that were big and made my veins keep collapsing. And when they collapse, blood stops coming out. I ended up being jabbed four times for blood today. There was also an injection of contrast for the MRI, so that’s a total of five jabs and a whole slew of new bruises on my arms (one of the effects of Cushing’s is easy bruising, hooray!).

And then it was to the doctor! Where he looked at the scans from the MRI, and is fairly certain that I have a tumour in the pituitary, which is awesome and what we wanted to happen. He’s waiting for the official report from the radiologist, which he should get tomorrow morning, and then we’ll see where to go from there. I have to have another test, a sinus sampling test (I think? Or something like that) where they apparently stick a needle in my groin. Oh god more needles. He also described the surgery procedure, and telling me what might happen if things go wrong. If they don’t remove enough of the tumour, then I’ll have to have surgery again. If they remove too much, then there could be problems with fertility, and probably other problems too, but the only one I remember him saying is the fertility one. So, let’s hope the surgeon’s good and only removes what he or she has to.

He also told me about a patient he had who decided to not have surgery or medication. She was my age when she was diagnosed, and now she’s in her 30s but looks like she’s in her 50s, and has had a stroke and a bunch of other medical problems, and probably only has another five or ten years left. So I guess those websites that say Cushing’s can be fatal weren’t that off the mark.

1st November, 2008

I’m in the middle of sorting out my fucked up body. I went to have a bone density scan yesterday, and saw my doctor again briefly. He got the official radiologist report back and it confirmed what he thought: I have a 6mm by 8mm tumour on the right side of the pituitary, and it will be getting removed probably in early December. Assuming that’s the tumour that’s the trouble-maker, that is–I have a sinus sampling test in a couple of weeks to make sure that’s the tumour they want to remove, which I’m not looking forward to at all. Apparently they stick needles in my groin and they’re taking blood every few minutes. So much blood, in fact, that they need three doctors there to make sure the labelling of the blood doesn’t get messed up.

I’m not liking this Cushing’s thing much. This is everything that has happened to my body because of the stupid tumour and stupidly high levels of cortisol: easy bruising (my arms are covered in massive purple bruises from getting blood taken from six different places); bright pink stretch marks on my boobs, hips/waist and legs; weird vein patterns on my legs that make them look like a roadmap; weight gain around the middle of my body (w00t, beer gut); muscle loss in my arms and legs; inability to get a good night’s sleep (I can’t seem to sleep past 6:30am these days, it sucks); acne (just like high school all over again…); rounder face, and as a result of that, my glasses are pressing more deeply into my face and leaving an indent; shaky hands; low bone density (I have pre-osteoperosis! Despite eating shitloads of calcium, god damn); and bruises/spots whenever I do anything vigorous, like walking slightly faster than 4km/hour.

And then I feel crap complaining about this, because it’s not that big a deal. It’s curable. I’m not going to be like this forever, fingers crossed. They’ll put a hole in my head, get rid of the tumour, and hopefully Cushing’s will be gone. Other people have far worse problems than me, so I feel guilty for feeling bad. And I don’t actually feel that bad about it, most of the time. I’m glad that it’s getting sorted, and so grateful to my doctor for hurrying everything along so it does get fixed as soon as possible. Most people tend to have more shocked reactions than me when I tell them I have a tumour in my head. But there are times when I do get frustrated, like last night, when all I wanted to do was to be in a frame of mind to celebrate the finishing of Honours but instead, I was thinking about brain surgery.

11th November, 2008

I had the consultation with the neurosurgeon today, and that was a cheery visit.

The first thing we went through were the three ways of treating Cushings: medical, radiotherapy or surgery. They aren’t really options, though, because quite frankly, the first two options suck.

With the medical one, it’s just drugs for life. They’ll give you drugs to suppress the symptoms, and somehow control the tumour, but it doesn’t get rid of the disease, and the symptoms don’t go away completely. AND YOU’RE ON DRUGS FOR LIFE! Why would anyone choose that?

Radiotherapy sounded really bad, too. It might get rid of the tumour, but it would take two to three years, it will destroy the pituitary gland and therefore you’ll be infertile and on hormone replacement therapy for life, and it can cause a whole host of other problems, like maybe tumours elsewhere.

And so, surgery. It has a whopping 75% success rate, I’m told. That’s good, right? It’ll get you a Distinction at the undergrad level, but it won’t get you First Class Honours. So he went through everything that could go wrong with surgery, and I’m feeling slightly alarmed. I know that he has to tell me everything that can go wrong and all the risks, but I kind of wish that I didn’t have to know.

Things that can go wrong with surgery

1. I die. Because there’s always a chance that that will happen with brain surgery! But the chances are really low, and he hasn’t had a patient die on him yet.

2. The tumour is located really close to a blood vessel, so if they break it, then I could have a stroke or have lots and lots of bleeding and may need a blood transfusion.

3. The area they’re operating in is really close to the optic nerve, so if they bugger something up, I could go blind. But he also said that he hasn’t done that to any of his patients yet.

4. They might not remove all of the tumour, and I might still have Cushings after. They’ll be doing lots of tests after the surgery to check my hormone levels, and if it looks like they aren’t normal, the options are to go in straightaway and remove the entire pituitary gland, which I don’t want, because that will have the same net result as radiotherapy – infertility and hormone replacement therapy for life. Or the other option was just to wait awhile and then decide if I want to remove the gland.

5. The area where the surgery is done is also close to some other membrane thing. And I don’t remember the details of this point, but there was stuff about spinal fluids, and if there’s a tear in that membrane, then it could leak, and leakages there could lead to bacteria getting into the brain and cause meningitis. So if they see a tear and a leak in surgery, they’ll just cut some muscle and fat from my thigh and plug it up, and put a drain at the bottom of my spine to drain out the fluid. And the drain will stay there for two or three days? I think. This apparently occurs about 20% of the time, so it’s fairly common, but all the stuff about cutting flesh from my thigh and plugging me up happens when I’m knocked out, so it’s all good!

Even though this all sounds rather shit, it’s not all bad. My tumour is obvious on the scan, and localised I think was the term that he used–it seems to be a fairly large, obvious, straightforward tumour to be removed. And all the things that I listed above about what could go wrong are just things that could go wrong. Things could also go right, and I could be one of the 75% of cases where it goes smoothly, Cushings goes away, and I’ll still be able to have kids and not be on drugs forever.

Actually, there’ll be drugs for the next year, at least, I think. My current levels of cortisol are stupidly high, and my body has become used to that, so when the tumour gets removed and my cortisol levels drops to nothing (comparatively – because really, 10mg is nothing compared to 4200mg), then the body will go “Wtf? Need cortisol! Collapse”. So I’ll be on some cortisol drug, to wean my body off it.

And speaking of time frames, the surgery should happen before Christmas. It might be in the next couple of weeks, or it might be longer, depending on a few things like my private health fund and waiting lists. I’ll be in hospital for six days, and off work for three to four weeks after that. I just e-mailed my new work, and they said that working from home is definitely an option, and I can do web-based research and reading if the doctors permit it. Which they should, because it’s not like reading and writing is that strenuous… My brain will still work, right? But yay, I love that my new work is awesome and flexible and actually able to let me do this. And not say, “What? You’ve started for a week and now you want to take a month off? Piss off”. Although I did tell them about Cushings and surgery at the interview, so they knew what they were getting into when they hired me.

So there are good things out of this! My tumour is cool, and my work is cool. I’m just going to adopt the Chudley Cannons motto for everything else: “Let’s all just keep our fingers crossed and hope for the best”. Things will be okay. And if they aren’t, then… There are still people far worse off than me. I’ve really got nothing to complain about.

(Actually, I do have one disappointment – I don’t get to keep the tumour. Alas!)

14th November, 2008

I feel a bit like a human voodoo doll. Or pincushion. Eight needles and a night in hospital later, the inferior petrosal sinus sampling test is done, and I’m slightly impressed by my ability to remember medical terms *like* inferior petrosal sinus sampling. But ow, my arms, hands and groin still hurt. I was left with two arms full of bruises after my last lot of major blood tests, and they had finally faded completely a few days ago, and now they’re covered in bruises again. I swear, it’s not Sam beating me up! It’s the blood!

I have a CT scan in about an hour, and they’ll probably want to stick more things in me. I think I still have an untouched vein left in my right arm. Which is untouched for a reason – it’s shit. But they’re only scanning my head and bones today, so maybe they won’t need to inject me with contrast…

Not really liking this Cushing’s thing.

21st November, 2008

I saw my doctor today to get the results of the sinus sampling test. The tumour is on the right side of the pituitary gland, and so all the excess hormones should be coming from that side. The test showed that it was coming from the left. Wtf body, stop being difficult. If it’s not *that* massive tumour that’s the problem, then what is?! My doctor did tell me later, though, that the test doesn’t localise the source *that* well, with only about 70% accuracy, and because the gland is so tiny and the tumour is a bit big, it could have just spilled over and shown everything coming from the left, and it still actually is that tumour that’s the problem.

There are two outcomes at the moment. One, the surgeon decides to remove just the tumour, and hope that fixes everything. Or two, he removes tissue from the left side of the pituitary, which is where the problem apparently is. The second option is pretty much removal of the pituitary gland, and will mean hormone replace therapy for life (yay, drugs!) and fertility problems.

But the good news is that the source is definitely the pituitary! And not some weird growth on my lung or something. Which is what the sinus sampling confirmed, and was the reason for doing that test in the first place.

And the other good news is that I have a confirmed surgery date, which is next Thursday. There are still dramas with my health fund at the moment, but I’m pretty much resigned to the fact that I will be paying a shitload of money because I’m paying for a private hospital and my health fund won’t cover a lot of it. The reason I’m going private isn’t because I want a nicer bed, it’s because I want to get it done next Thursday, and not have to wait until next year which is probably what would have happened if I went public. But I really don’t want to drag this out any longer, because Cushing’s sucks. I want everything that’s wrong with my body (and believe me, there’s a lot) to be fixed, sooner rather than later.

Things could be worse! Yay, hospital food!

25th November, 2008

I’m going to hospital tomorrow for adventures! Hospital tomorrow, surgery on Thursday, three nights in intensive care and four nights in an unintensive room, and then back to my parents’ for a week or so. I love that I can use neurosurgery as an excuse to lie around and do nothing except for read trashy novels.

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.