An adventure in Cushing's and stroke

So, I just posted a few journal entries I wrote as I was being diagnosed with Cushing’s: Back in time (Cushing’s). That turned out longer than I expected, so I’m making the stroke a separate post.

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.