An adventure in Cushing's and stroke

Okay, I don’t *really* treat my body as a temple. I really love chocolate and dessert and hot chips and ice cream. If I treated my body as a temple, I would avoid all fast foods, anything processed, and probably not even think about sugar. So perhaps this post is a little hypocritical, but I’m going to write it anyway. It’s been on my mind, and more so after a comment my friend made.

I have never smoked a cigarette in my life. I’ve also never been drunk. I have friends who smoke and drink and get drunk, and I’ve accepted that it’s their choice. I know that they are smart people and they know the consequences of smoking and drinking.

And so that’s why I don’t really understand why they do it. Why, when we have so much knowledge about the effects of drinking and smoking, perfectly wonderful and smart people continue to do it?

The woman next to me when I was in hospital had a stroke. Her entire right side was paralysed, and she wasn’t making particularly good progress at regaining motion. She would get very depressed and emotional, and you could see that she hated being dependent on someone else for virtually everything. Her memory was also very bad, and she would forget what had happened throughout the day. She couldn’t even remember how she met her husband.

She had her stroke because she had been smoking for about thirty or forty years. Smoking doubles your risk of stroke because it causes your arteries to fur up and your blood more likely to clot. And that’s what happened to the woman next to me.

When I had dinner with my friend who had been recently treated for a rare cancer, he said to me that he doesn’t understand why anyone would knowingly do something that would increase the risk of getting cancer. Because really, hospitals, chemotherapy, lumbar drains, daily blood tests, and knowing that there’s a high risk of dying is not something we could imagine anyone wanting to go through.

And similarly, I don’t understand people who drink to excess, or do other stupid things like drink and drive. It doesn’t matter how old you are, or what gender you are, or how fit you are, YOU ARE NOT INVINCINBLE. No one is.

Bodies are really, really amazing. They do so many great things that keep us alive and well, and most of us don’t know a lot about what goes on behind the scenes (or under our skins). They repair themselves when we do things wrong, they regulate and replenish and they forgive us when we do things like skip a couple of gym sessions or eat the last brownie.

Why would anyone willingly choose to abuse it? There are so many people out there who would give anything to have a healthy body and know that they will have a reasonably long and normal life (as far as their health goes). And there are people who have that and don’t realise how great it is. They take it for granted and they abuse it. Or they think it’s not good enough and they change it with surgery, but that’s a rant for another day.

I had dinner recently with a friend from uni I hadn’t seen in almost two years. I emailed him to say Merry Christmas, and to say that I hope life is chugging along fantastically. His reply was quite unexpected. His 2009 was shit. He had been diagnosed with and treated for a rare cancer, and while he’s in remission now, it wasn’t an easy road to get there.

So over a dinner of sushi, we talked about hospitals, our medically-interesting bodies, incompetent doctors who don’t diagnose properly, how frustrating it is to have one thing after another go wrong, how you feel when you’re an atheist with people offering prayers for you, and what the future holds.

The conversation that night was a lot heavier than our conversations of the past, where we would mainly be discussing how shit our lecturer was, but it also felt as though we had a lot more in common now than we did when we first met. It was an interesting evening, and it made me realise again just how amazing our bodies are. The way they work is practically magic!

And so we are into 2010. Last night, especially when watching the fireworks, I kept thinking about the previous NYE. I knew exactly where I was – in hospital, with Sam and my roommate Karina. We decorated our ward with balloons, played card games, watched fireworks on a small crappy TV, and talked about where we’d spend the next NYE. In the 365 days between NYE 2009 and NYE 2010, so much happened. I still cannot really get a grip on how big 2009 was. Every year between 1985 and 2007, things were quite boring and stable. They were happy, and content, and fun, but they were also predictable. 2008 mixed things up a bit, and 2009 changed everything. I think that 2010 will be a lot of fun, and I enter 2010 with very different experiences, expectations and events to look forward to, and it is all because of what happened in 2009. 2009 was the year that laid the groundwork, that introduced me to some new and amazing people, and that showed me that I really, truly can choose what direction my life goes in. Life is not one predictable straight line, and what other people do affect you a lot, but ultimately you choose your reaction and there is still a lot of choice left in life.

2009 was a year of the lowest lows, but also the highest highs. There was a lot in between, and there were quite a few mid-range lows, but also a number of mid-range highs. And that’s what life is, isn’t it? It’s good and bad and happy and sad. It’s rain and storms and beautiful sunny days. It’s disappointment and excitement. It’s love and laughter and friendship. It’s happy moments and content moments and forbidden moments. And it’s fucking amazing.

It’s kind of strange to see what search terms people use to find this site. A lot of them are about Cushing’s, and some are about stroke. Some of the terms give me the impression that whoever typed the query in is looking for answers. Some of them are very specific Cushing’s terms, like inferior petrosal sinus sampling or 24 hour urine free cortisol test, and others are a bit more general, like do stretch marks fade.

I just want to say here that I don’t have all of the answers. I don’t know everything about Cushing’s, and I’m not a medical professional. All that’s on here is everything that I went through and everything that I learnt, so while it’s all accurate for me, not every case of Cushing’s or stroke will be like this.

And finally, if you are searching for terms related to Cushing’s or stroke because you or someone you know is going through it, then I’m sorry. They are both quite shitty things to happen.

This is a weird month. Most Decembers, I think to myself, “Already? Where has the year gone?!” This December, I’m thinking, “Wow, what a year”. Ever since the 2nd of this month, I’ve been thinking back to this time a year ago, and where I was. When I make plans for Christmas and New Years’, I think back to Christmas and New Years’ 2008, and every time I do, I’m amazed and grateful of how different 2009 will be.

This Saturday, I’m going to Walk Against Warming. Next week, I have my work Christmas party, drinks in the city with friends, and a barbecue at another friend’s house. My plans for Christmas this year are cycling on both Christmas Day and Boxing Day, relaxing day with friends the day after, and watching the fireworks on Sydney Harbour on NYE.

December, Christmas and NYE 2009 are a massive step away from 2008. This time last year, I could just move my fingers, and I couldn’t sit up unsupported. This year, I have freedom and mobility, and the feeling that 2009 has been the best year ever. Actually, at the end of every year, I think that it’s the best year ever. This time last year, I thought 2008 was the best year ever because I had a lot of fun writing a thesis and spending time with friends, and spent the entire year in love. This year, I spent the year learning that I don’t need to be in love, and life is still amazing. This year, I spent it regaining mobility, raising money, cycling, working out, working, and with a lot of people I love.

I checked the account of the stroke to see where I was at a year ago, and I still can’t quite believe where I am now. To all my friends who were with me this year, you are awesome and I love you all!

Today is one year since the stroke! In this one year, I have relearnt how to sit up, how to walk, how to tie my hair up, how to do up buttons, how to tie shoelaces, how to walk up and down stairs, how to do up bra straps, how to type.

In this one year, I have spent a lot of money on doctors, had a lot of blood tests, had a few scans and a few probes.

In this one year, I have raised $9300 for the National Stroke Foundation, relearnt how to ride a bike, got fit, done interviews with people for a book I want to write, and submitted applications for a PhD and made travel plans for 2010.

In this one year, I have realised all over again how incredibly amazing life is. How that there are shit things that happen and things don’t go according to plan and that sometimes there really are days that suck, but that’s okay. That doesn’t stop life from being so incredibly wonderful and it doesn’t stop being alive being the best thing of all.

I really, really love being alive.

A follow up to the earlier post I made about 30 things I learnt in the past year, here are the presentation slides that I used: Slides

Now just imagine those slides, those 30 things, and everything on my website spoken aloud by me in half an hour, and you’ve got the whole presentation!

Last Friday, I gave a presentation at Elton about, well, everything. It was about Cushing’s, stroke, fundraising, my attempt to write a book (in progress) and my plans to do a PhD next year (whether I do that or not I’ll find out next month). My friend Mel who works at Elton was the one who asked me to do it, and when I was talking to her about what the presentation should be about, it seemed that it was supposed to be everything on this website in presentation form.

I did the presentation in the form of 30 Things I’ve Learnt In The Past Year, complete with lots of pretty pictures. These are the lessons.

1. How to say “endocrinologist”
2. What an endocrinologist does
3. How important the medical team looking after you is.
4. Some of the differences between the public and private health systems.
5. How much healthcare can cost (a lot).
6. That people in the medical profession are wonderful and often very willing to help.
7. That people in the medical profession are exactly that – people, with lives and stories.
8. How to say “pituitary”
9. What the pituitary gland does.
10. What Cushing’s Disease is.
11. What the symptoms of Cushing’s are.
12. What causes Cushing’s and how it can be “cured”.
13. What a stroke is
14. What can cause a stroke.
15. The number of people involved in the stroke recovery process.
16. What being half-paralysed is like.
17. What freedom is like.
18. How wonderful fresh air is.
19. What being in hospital for an extended amount of time is like.
20. How much you rely on the people around you.
21. How depressing hospital menus are.
22. That the public health system is so important, and doesn’t deserve all the flak it gets.
23. That Medicare is a really damn good system.
24. That if there’s anyone who deserves scrutiny, it’s not the public health system, it’s the private health system.
25. That fundraising is hard, stressful and frustrating, but so worth it.
26. That you really don’t forget how to ride a bike.
27. One way to get the most out of life is to look upon it as an adventure. – William Feather
28. The best way out is always through. – Robert Frost
29. Our greatest glory is not in never falling but in rising every time we fall. – Confucius
30. Nothing great was ever achieved without enthusiasm. – Ralph Waldo Emerson

I think it somehow works better when you see the pictures and actually have me explaining the story behind each lesson, though. I can’t really convey the same effect in one post, unfortunately.