Selenay's Ramblings

What's been going on with me lately?

Well. I sort of maybe slid into a bit of a Good Omens obsession over the last couple of weeks. Re-read the book just before the series arrived on Prime and suddenly understood why Crowley/Aziraphale was such a Thing in the book fandom (how did I not see it when I was younger, wow). And then there was a binge on the series and...

I now have bookmarks proliferating on AO3. A lot of fic on my Kindle. Loving the fact that this is a fandom where there is so much fic *already* and then there's so much new fic because so many people have done the same as me. I've even got a fic in progress.

Guess I'm falling for a new fandom :D

I'm off to vidukon_cardiff on Friday, where I will spend a weekend with friends doing fanvid stuff and trying not to come home with plans to make vids myself. Sadly, Good Omens hit too late for any of the vids being made to be shown at VidukOn. Boo. However, there's a vid show called "Be Gay Do Crime", so I think this is going to be a good con for me anyway :D

And there are lots of lovely vids already popping up everywhere. I will resist the temptation to take up that terrible hobby. All I'd make is Crowley/Aziraphale vids based on Queen songs, which I sense is the biggest trope in the fandom and I'm so not a trope person.

*quickly hides all the tropetastic fic posted to AO3*

Um. What was I saying?

In non-fandom stuff, I did a 10km walk on Saturday to raise money for Crohn's and Colitis UK. It feels like such a huge achievement, particularly when I've been in a low-grade flare since autumn last year. I'm feeling much better now and it's mostly under control, but given how awful I felt in March, doing this feels like a big deal.

It's the 26th of January again. Six years ago, I insisted on having some blood work done because I felt ill and exhausted and thought I might be slightly anemic. Or at least, suffering from messed up electrolytes because I hadn't been able to keep any food inside me for a few days. Friends had been telling me I wasn't imagining, I really looked ill, for a long time and I finally insisted the doctor was wrong and I needed some blood work.

A few hours later, I was told to rush to hospital ASAP, where I received multiple blood transfusions and began getting tested for bowel disease.

That morning, I didn't feel too concerned. With six years of hindsight, I can read between the lines and see how much of a front I was putting up. When I said I was working from home? I meant that I was lying on the sofa with my laptop on a coffee table, working, because if I sat up for long, I got so light-headed and started to pass out.

The next day, after a night in the ER receiving all that blood, the gravity of it hadn't really sunk in yet. It was so hard to believe I was really sick. Obviously, it sunk in over the next few days, as tests and heavy-duty drugs and so on began. But at that time, I just couldn't accept what had really happened to me and how close it had really been.

If I hadn't had the blood work that day, it's probable I would have gone to bed that night and not woken up. I don't have to speculate--medical professionals have told me that.

The nurse who took my blood that day and put a rush on the results saved my life. The receptionist who took the results off a fax machine and called me to tell me to go to the hospital immediately, she'd send an ambulance if I couldn't get a drive, saved my life.

The doctors and nurses who worked on me saved my life.

The donors who gave their time and their blood saved my life.

The friends who told me I wasn't crazy and should get some tests done saved my life.

Every year, I think I'll forget about this. But every year, I feel so grateful for the extra year I've just had. There are now six years I wouldn't have had without all those people who saved my life.

That time hasn't always been easy. I've had days when I've been in so much pain, I didn't know what to do. I've had days when I'm so fed up with drugs and needles and doctors, I've wanted to stop it all. But the good days have far, far outweighed those and I'm grateful for every one of them, the good days and the bad days.

And so, as has become tradition, I can't forget about that day six years ago when I came so close to dying. I can't forget about all the people who combined to save my life that day.

All I can say is, thank you. From the bottom of my heart, to everyone, thank you for saving my life and for the six years I've been alive since. THANK YOU.

*blows dust off the furniture*

So, that whole "I'm totally going to blog regularly, really!" thing didn't last through the end of the winter of hell. Whoops.

So, time to start again.

Where to start?

I'm enjoying the lack of winter. I'm over the moon that Agent Carter got renewed with a ten episode order. I have no words to express what I feel about the Hugos clusterfuck.

My back has totally borked itself and I've spent two months trying to get a new GP, because walk-in clinics are bloody useless for this stuff. Next Friday I'm seeing someone who *might* be my new GP. Cross your fingers? It would be nice to have some help and a referral to the right people.

I've also got a colonoscopy next week. The original plan was to do it later in the year, but I got offered an appointment on Friday for next week, after some bloodwork results came back. That's not worrying at all, obvs. I doubt my haemoglobin is low, so it's probably a raging white blood count and possibly some high inflammatory markers.

I can't imagine why that's happening. My back has only been a mass of inflammation since February. Although I'm willing to concede that I might be getting some belly pain that I've cheerfully been ignoring for a couple of weeks. Urk. It'll be interesting to see what the scope shows, anyway.

Guess I'm playing medication roulette again soon :-)

I have done so much reading. The only time my back is relatively not painful is when I'm walking or pedalling on my stationary bike, so I've had my nose in a book while I pace the house or pedal. So much fic reading. So many books.

Writing hasn't been easy, because sitting makes my back hurt, but I have managed to figure out an arrangement with my iPad and a keyboard that isn't too awful. I write in bursts and then wander off to read and pace for a while before writing some more. Working at my desktop only happens on weekends during my good phases of the day, so editing of any form has been horrendously delayed. Ugh. But I'm getting there.

Summer hiatus is upon us. I managed to keep up with most shows, but I've still got a few Sleepy Hollow episodes to watch and I didn't quite manage to marathon the last half of Arrow before Mum arrived for her annual visit last week. I'll be trying to sneak in the last couple of episodes whenever she's out.

I'm sure there must be interesting things for me to talk about, but the habit has gone again. Drat! Anyone got something they want me to write about?

I assume that at some stage I'll look at the calendar on January 26th and not be thinking about where I was at this time N years ago. This isn't that year.

It is now officially two years since was admitted to the ER for emergency blood transfusions due to (then) undiagnosed severe extensive ulcerative colitis. I'd lost half my blood volume and couldn't sit up or stand up for long without feeling faint and dizzy. I was having unexpected 'naps' regularly, getting winded walking anywhere and the nurses were frankly amazed that I was still conscious with my numbers where they were.

I've mostly got past the bit in the saga where the urgent care clinic docs insisted there was nothing wrong with me. It happened and it sucked but it won't happen again because Awesome GI Guy keeps a close eye on me.

What still blows me away is that somewhere out there are three people who donated blood and saved my life. The nurses assured me that had I not received blood when I did, I would have been unconscious by the following morning and dead a day or two after that.

Those three units of blood literally saved my life that night.

I've been able to thank the doctors and nurses who worked on me that night and the doctors who have treated me since. The researchers who developed the drugs (and are still developing new, better drugs) that have kept me going since then are people I'll never be able to thank but hopefully they know how important they are to the lives of patients like me.

But the most important part of January 26th 2011 was the three units of blood I received.

Due to my medical history I can't donate blood or bone marrow. I'm signed up as an organ and tissue donor, but there's a good chance that they won't be able to harvest much from me when I die. So I've got no practical way to give back to the donor system that helped me and will probably help me again in the future.

The best I can do is this: giving blood saves lives. I'm living proof of this. If you can give blood, please do it and know that those of us who are unfortunate enough to need it really do value your gift and we thank you from the bottoms of our still-beating hearts.

Helpful hint to fanfic writers: typos will slip through even the most thorough beta, but really try hard on slaughtering the typos in sex scenes.

Bugle <> bulge

That particular substitution in the middle of a sex scene is jarring, to say the least :-D I spend the next five pages with my brain on a permanent loop of unfortunate anatomy.

This week there is no Tour so I'll be trying to get a lot of writing done. I'd like to have two chapters of the marvel_bang done by the end of the week and a signficant chunk of the ridiculous AU. That would, at least, get me near the halfway mark on the MBB first draft and through some of the bits of the ridiculous AU that I'm nervous about.

( Cut for slightly lengthy personal stuff )

In other news: the all salad all week supper plan is coming into effect today...just in time for a prediction of two days of torrential rain starting tomorrow. I apologise to all Atlantic Canadians for the coming rainpocalypse. I'll try to make next week filled with comforting pastas, roasts and other foods one does not want on a hot day so that the weather returns to summer.

Also, my cats are very...special. Annie-cat showed us on Saturday that she has a look of Great Judgement. Apparently I must shower before cuddles are acceptable if I've used sunscreen and she will judge me for the sunscreen and lack of cuddles if I do not.

Kate produced her Super Death Glare last night when I dared to suggest she should move so that I could feed her. She was very comfortable, thank you, and when faced with the choice between food or being allowed to stay comfy and asleep, she'll take the latter.

My cats are not like other cats, I suspect.

Every now and again, say every fourth or fifth dose, my fortnightly injectable medication makes me feel like hell. Usually nausea, headache and general fluish exhaustion.

This was today's joy. With the bonus of two important meetings and a lunch invite from the boss.

I made it through the meetings. I gracefully declined the lunch invite, reinforcing the weird impression that several colleagues have that I'm a vegetarian. They were going for BBQ. While my bland soup and toast did finally settle my tummy somewhat, I suspect that the smell of meat and ketchup and frying things would have been of the bad.

Apparently it wasn't that good. The pulled pork was dry and sauce-less. So I missed nothing, as a colleague who knows that I'm an omnivore-who-eats-less-meat-than-the Canadian-standard reported.

So that is why, instead of running around with a vacuum, scrubbing the bathroom or peddling my exercise bike I'm relaxing on the sofa with tea. Those things can wait. I need some rest.

So, my day has been reorganised, I'm missing some of the rugby and my tummy has shrunk enough to barely manage half the pasta lunch I just treated myself to...

But the car is fixed and didn't cost me anything thanks to the amazing warranty I got when I bought it. That warranty is paying for itself nicely.

Now I'm sitting outside the hairdresser (having turned up half an hour early, just in case I was late again) trying to pretend that the stomach cramps are from over-eating and not from the stupid UC flare.

That's probably why I fell apart a bit this morning. My brain turns to mush from being tired.

Still, at least I have Nightwing to keep me occupied (oh, and Fantastic Four, mustn't forget that), some Doctor Who if I don't want to read and various people on Twitter keeping me insane through the worst of the day.

The large capacity (for videos) and 3G (for reassurance via Twitter and LJ) on the iPad are paying off.

Today has definitely been one of those days where I remembered why I felt so stressed just before my vacation and can't quite figure out why I thought databases would be a good career choice. Yeesh.

I managed to duck out early, though, to have a visit with Awesome GI Guy. He's very pleased with me and I'm officially back in remission :-) No change to the med schedule, we're going to see how I do for now.

I've got an appointment (finally) with a rheumatologist next month. The rheumy is probably going to order a ton of bloodwork, so Awsome GI Guy wants to be copied in on that rather than ordering his own bloods for next month and getting me stuck with needles twice in one month. Sensible guy. Awesome GI Guy also got a demo of just how nasty my back is being (I'd been sitting in his waiting room for a while, it got painful) and is speculating that this is ankylosing spondylitis. Not something that would shock me, given the UC and a family history of AS, but it was a surprise to hear someone admitting that it may be the cause.

And that's why he's Awesome :-)

Anyway, tonight is supposed to be miserable out there so I've done a short yoga practise and will be skipping class tonight. Instead I shall curl up with some TV watching. Yay.

Things I still need to do on the new computer:

1) Install iTunes
2) Switch Mcafee licence (I have until 12 Nov. to do that)
3) Install an HTML editor
4) Set up office VPN
5) Install and set up Thunderbird

It's a short list, but a couple of those are time-consuming things and I've not had much time after work this week. This is largely due to back pain. Argh.

I am really very hungry. Time to heat some chilli, methinks.

I've been having a bit of a week. My computer played silly buggers on Wednesday and I've been nervous about turning it on ever since. And having anxiety moments every time I think about it, even though it's irrational to the extreme because the world isn't over if I have to replace my computer a bit earlier than planned.

Deadlines are approaching at work and things we thought would be easy to achieve are turning out to be epically not easy and in some cases require extensive work-arounds in order to get things working. So, you know, more anxiety.

On top of that, I am starting to think that my remission status only lasted two weeks. I won't go into details, but since the middle of last week there have been strong hints that I'm getting sick again.

I keep promising myself that I'll call Awesome GI Guy tomorrow if things don't improve. And then promising the same thing tomorrow and on and on. Mostly I just don't want to admit that Humira may not be holding me in remission. I'm so sick of hospitals, tests, needles, drugs, side-effects and everything else. I'm done. I don't want to talk about it to friends or family IRL because it will just worry them and I know that burying my head in the sand is not helpful but I just wanted a few weeks of being OK :-(

I wish that I could forget all of this and go into the weekend feeling calm, but the computer issues and possible flare are both things that will be rearing their heads over the weekend and I'm not good at forgetting about work.

I'd been doing so well at not being anxious and this week has just thrown me. My head is a bad place.

So, we shall start with the good news: there is no sign of active disease!

To quote Awesome GI Guy: "If I didn't know you had colitis, I would swear you didn't have it".

I believe this means that I'm officially in remission :-DD

Also, I can now eat All The Things. Salads! Raw veggies! Beans! Lentils!

I may need to slowly reintroduce these things (last night's entire head of broccoli may have been a mistake...) but it's such a relief to be able to eat normally again without worrying about my innards.

On the bad news front...

My extreme exhaustion should not be happening. I'm not losing blood and there is no longer any inflammation so there should be no fatigue. Awesome GI Guy is concerned about this and has ordered immediate blood work. I shall be stabbed tomorrow and I have to call the office on Monday to find out what they want to do next. He is putting the Awesome in Awesome GI Guy by being unsatisfied by me being drained, tired and occasionally light-headed and determined to find the cause. I adore him for this.

Today was a nausea and fatigue day. On the one hand, I was annoyed that I felt so ick because I wanted to see Awesome GI Guy and say "Looks, all better!" because it makes him happy. On reflection it was actually a good thing because he could tell by my lack of general perkiness that something wasn't right. Let's hope something nice and simple shows up in my bloodwork so that I can feel properly better soon, OK?