Today's Question

Inspired by a friend who answered this question very publicly, I thought it was very brave!

 I'm not ok.

My lupus has been the most crippling it's ever been in the 10 years I've been living with it, and I am having to re-adjust my life plans and goals a lot. Medication is tricky and we're always adjusting and trying whatever we can to help with my pain and fatigue - maybe even get me out of this flare one day! The drugs have their own horrible list of side affects, I'm the heaviest I've ever been and my face doesn't look like my own face anymore. And don't even get me started on the steroids! Hot,angry, hungry, all at the drop of a hat.

Diabetes is still the horrible cherry on the top of it all. Difficult to control, constant daily work, and inconsistent results makes me burnout quickly.

I have been entertaining the little black dog far too much recently. It keeps telling me nothing i do has any point to it. Even if I do a full days worth of craft (spinning, weaving, or sewing), I still feel like I have achieved nothing and just wasted time. 

I hardly get to see any of the fabulous people I love so dearly. All I can say is thank goodness for social media, or I think I would have completely lost touch with everyone by now! I'm always so grateful for the time I do get with friends, esp when I may have canceled a lot of stuff. You guys are all so understanding and great <3 

I find it hard to read, code, draw, concentrate, and sometimes even play games. Lupus brain fog is a killer! Motivation, activation, and functioning is much harder and more draining than it used to be. I want to make more games, websites, ponies, quilts, artwork etc, but right now it's just too difficult and frustrating.

I feel like a lot of chapters in my life I wanted to start aren't so much of an option for me right now (studying archaeology, going back to AIE, developing games, traveling the world, etc etc). But my partner moving here from perth (after knowing one another for about a decade now!) feels like a whole new chapter is starting, one that I didn't expect to even begin! I have a feeling it'll be the best one yet.

I'm excited and terrified by my future. I often still struggle to just move and think.

Looking at this now, maybe I am OK. I mean, I'm not great, and its hard and depressing and the black dog has really been plaguing me recently...

...But I have amazing support in my friends, family, and puppies. I have a lot of love in my life and it makes that uphill struggle with health (mental and autoimmune) so much more bearable. I have hope about the future which I didn't have before, and it's looking pretty spiffy. 

I Still Count

I know shouldn't but i have been reading #1reasonwhy and other women in games articles. I know it makes my blood boil but I do it anyway.


 I feel like my illness and gender are the reasons I'm not currently in the games industry like i studied for....It makes me so mad! I want to write a whole blog post about it on my sick blog - but am ironically too tired.....

Raeding the tweet tags reminds me of how the guys i had to try work with would bitch about me behind my back. About how i was the worst programmer, how they hated they had me in their team (what a burden i was!),  or "Why does she even bother to come in". Major end of diploma project the other programmers basically refused to work with me.




Infact it's amazing i still recommend AIE to people! I guess im mostly recommending it to cis white males in some way, that and the teachers were awesome and i loved learning about what i was learning :P It was more the other students and my illness that i struggled with.

I often burn out at the end of a term, about a week before the holidays when important stuff it due. By the end of teh year im allready spent so my first year of AIE was pretty good till the end of the year. I wasn't to behind, not the best programmer i was hoping i could be but still fairly capable.  I did find i told more sexist jokes about women (they belong in the kitchen etc etc) as a defense i think. I was one of only 3 females in the programming class and the boys were more competitive than i was. I thought if i could out mysogise them id cope better.

Second year was going to be tougher in general - we would be starting to work with the art students and team work terrifys me at the best of times. I often worry about people relying on me when i am inherently unreliable because of my illnesses. So i step back to some kind of managerial role if i can, or program something non vital to the project.

But in early 2nd year i was lucky enough to *finally* get the laperoscopy i had been wanting for years to treat my Endomitriosis! Operation was one day, put me in bed for a month, in turn behind at school by too much, and triggered a flareup. Around this time my medication for my ADHD started to stop working for me making life more exciting as well!

I found myself less and less able to do some little things...like read. Or simple maths or logic problems. A  *little* bit of a problem in a programming course.

My brain fog was bad, i did try to explain to my teammates when i could, and i was always apologizing for my uselessness. We had a major prototyping project i took a leader position in, i like to think it went pretty well. I think im pretty good at diplomacy which is what was needed a lot of the time. keeping others on track felt good, plus it gave me the time i needed for frequent breaks tither to the bathroom (yay diabetes) or cups of tea (yay panic attacks).

As i fell more behind everyone else, behind in my own goal, i got sicker and more depressed. Spontaneous suicidal thoughts started to pop into my head, almost like an impulse which scared me greatly. I start to see my shrink more frequently, but the panic attacks still get worse.


There was a huge oppertunity coming up for the 15 final project. The games company upstairs was going to do a special kind of joint project thing with some students. You had to put in a resume and do an interview to get involved.I submitted and did teh interview just for the sake of experience, i fully expected not to get a spot! Im not a strong programmer, I was in teh Avd. Dip not the bachelor etc etc.  I wouldn't have chosen me - but they did.

The sick chick who cannot even code got a spot! I was blown away, the chaps we worked with from teh games company were awesome - they understood i had some limitations but saw what i could contribute and valued it. They wanted me to help manage them and design and organise best i could.

Our project involved using mac minis - i grew up with macs and have a macbook pro as my main computer at home. I also have a gaming/dev PC and happily use the PCs at uni. Despite the fact i all ready knew a lot about teh platform i went and did some market research off my own batt to help us with the initial design stage.

All of it was ignored. Anything I managed to stick to the project was undone if i was home sick. Even when asked for my opinion on a decision, it was often dismissed outright. Workign with people who wouldnt communicate with me, respect me, listen to me, was that straw that broke the camel's back.








I spent most of my energy just getting to class, and then staying "with it" enough to keep up appearances. I had to pull out of the team, i refused to put up with it all anymore. I moved to an upstairs team, away from the old group, but failed to do anything much there either, except learn that i in fact love to draw landscapes :P

i felt like such a waste of space. I was so close to dropping out so many times, but by teh bloody skin of my teeth, my amazing family, and good friends and teachers i somehow managed to get my Advanced diploma and graduate.



I still don't feel like i earned it but there it is! 2 years of my life, some ok programming skills and i got to meet some spiffy peeps.

My plan was to go straight back into the fire and study the 3d animation side of the adv. dip. the very next year. I deferred due to health, i also moved back home with my parents and brother. I did some web development, some relationship development, some personal development, some sewing development, and no game development in 2012. A weird breakup triggered the flare i'm still in now, and stopped my plans to go back to the AIE again.

This year i can't study, and unlike last year the idea of even part time work is impossible. Im on some crazy drugs like cortisone, and fianlly on something effective for my anxiety (could have used that one 3 or 4 years ago ;P ), but none of this really changes  the fact im royally buggered. Lupus is kicking my ass!

BUT - this year  have started to look at some other ways i can get back into game dev. Using software liek Gamemake and RPG Maker VX (it was on sale on steam! shiney ) helps me design stuff again. I dont need to program it all myself from the bottom up, i don't have to reinvent the wheel. It has been fun, but still very erratic and slow. Also doing my own texturepack for minecraft, and looking into how to do simple mods, has given me a feeling of "yeah i *am* still a programmer" and whatnot.

And using little tools like that still *counts*, i keep forgetting that.  I need to remind myself that i still count and what i do still counts.

Pants Rants!

I really need a rant about stuff and I remembered I have a ruddy great blog for that!
Before I start the rant, I want to thank my friend Annie. She read my blog of sick shit and decided she wanted to help out by starting a fund-raiser for the wheelchair of my dreams! It took off, and in about 3 or 4 weeks we raised the money with lightning speed before we got the chance to do an event! It's blown me away, it's made me cry, and given me hope. SO thank you Annie and everyone who donated their time and money! <3 <3 <3 <3

I would have blogged about all of this sooner, but I've been very brain dead and sick....well hence the need for the chair, right? :P
 


/// DISCLAIMER ///
This next bit is RANTY! Also it is about sex and ladybits and stuff like that :P If you'd rather not read it, that is cool. Just giving fair warning

<RANT>
There are a few fundamental reasons I do not date people. My commitment issues is the main one, but also my health in terms of energy is such that I cannot maintain one anyway.

I still very much *like* people, and this rant will be about why I don't act upon my lust as much as I damn well want!

If people are super lucky, they get to see me once, MAYBE twice a month if at all. There are plenty of people who I haven't seen since last year due to my lack of spoons. This makes the possibility of trying to shag someone a little tricky :P

Then we get into how my body is right now....

My skin when i have a lupus flare has sores all over it, half of which are self inflicted from skin picking because of anxiety. It's not very attractive and unhealthy looking skin isn't sexy. it looks unhealthy because i am unhealthy which also isn't much of an aphrodisiac.
Even the skin on my breasts (both of which i am rather fond and proud of) have red spots or sores on them!

My lips are cracky if not actually infected with a cold sore. My tongue and gums have ulsores. The insides of my cheeks feel gross as if I have an extra layer of dead skin just hanging around to make my mouth constantly uncomfortable. 

HOW am i meant to kiss like this? If I do get lucky enough to .. get lucky.. my mouth dries up making kissing and such difficult as well.

Speaking of dryness, i have real problems with vaginal dryness. Traditional lube dries about as quickly as i do, so i use stuff called Replens. It's more aimed at women going through menopause and is a kind of 'long acting' lubricant you inset and keeps you more comfortable for up to 3 days. SUPER cool! Makes life more comfortable indeed! Lady juice in a tube. Thing is, a vagina that doesn't self lubricate properly, doesn't clean itself properly. When I started to use replens, all that dead skin inside that hasn't been washed out naturally started to finally get sorted out. This is normal when using this stuff and it even talks about it in their pamphlet so that's OK. Except that it is REALLY GROSS. And I'm still getting it now. I wouldn't let anyone near my lady bits right now because they don't feel right on the inside and that is GROSS!!


IF, for arguments sake, that it wasn't like all that, it'd be likely I'd have a yeast infection to stop me instead. Type1 diabetes with bad control, lupus flareup, and high stress doesn't make for a happy lady bits balance. I'm far too itchy to be sexy.

Then of course my Endoitriosis is still an issues with cramps (unsexy) and painful intercourse (very unsexy). I cannot even masturbate without some kind of pain.

What is the point of a vagina when I don't get to use it!


</RANT>

Just Keep Swimming...

I think it's been a week or maybe two since I started on the pred, the inital high has definantly passed ( but damn i got a lot of cleaning done ). After the high died down, all of the other stuff started to come back – fatuige, minor background headache, extreme hand and foot pain, daily cramps, etc etc.
 

So calling of doctors, changing of doses, but I think i am still getting back to before again. Mind you my brain functioning has been a bit better i think. Have actually been having game design ideas again, and i was able to sew a MLP body in 5 days!

 Have still been sewing a little but more simple stuff again as energy leaves me. I have some projects I want to do, designs i want to make myself, and some cooler thing, and oneday i *will* finish a quilt!! I have done a couple of blocks which I might post pictures of later, but still have more to go.


Not sleeping much at night, my fast heart rate is so uncomfortable and distracting. Even dozing during the day I am mostly just laying in bed and not properly sleeping. I know i can't make it on this next Sydney trip, no new piercings for me. Who knows about future parties only a few weeks away, one of which i am hosting! Eeek!


Still not really being the *best* with money right now. But some of that spending of the last pay was paying people back, which isn't so bad. I want to start saving up for my Dream Wheelchair, hopefully my grand father can help out but it would be a dream to have. Even if treatment come in and helps stop me flaring this bad, I still want a spiffy wheelchair for going out shopping. It would actually HELP with energy and pain! My walking stick doesn't really help with those things, but it does give a good visual cue to people I think.

Ontop of going back to my flare (having fun with vertigo right now for example), some worrying signs of my endomitriosis coming back to bite me. Almost literally, because it feels like my womb is trying to bite it's way out of my body with knives. Other symptoms that have been gone for almost 2 years (when i had the laperoscopy) are coming back now.
All i can really say is FUCK! And how angry i am. I don't really want to go through an operation again if i can help it, but it would be cool if one day sex (and/or masturbation) didn't hurt. Just sayin'.



No apologies for typos and such because...well because I said so :P 

Pros and Cons

The last few days have had ups and downs

Downs

• increasing pain levels
• increasing fatuige
• lots of days in bed
• too tired to game

Ups

• i did make it to one party i wanted to go to 
• i have started work on a sewing project again
• i have been remembering to take all my medications

• my new bed is nice :P

I have to remind myself that i am still sick, but i also have to remind myself about the stuff i do achieve each day (even if that's getting up before noon).

Maybe writing them down here will be good. 

Am I Sick Enough Yet?

The past couple of weeks has been crazzzzzy!

I have been very sick, too sick to write here even when I had the words running around in my head. Too sick to get otu of bed, and in soo much pain in my hands and feet it brought me to tears. I wanted to do a long (read: whiney) post about the utter pain and misery i was in. I had so much hate towards my old doctor for not treating me months ago when this flareup began. After years of fighting for a diagnosis i was so angry i had to fight for my treatment as well.

Dispite all this i did also have hope, the most preacious thing with chronic illness is hope. Mum and I had agreed tpo go to see the first doctor we saw about my problems 8 years ago, we knew he wouldn't stand around and do nothing if there was anything he could do. Had the appointment with him almost a week ago and he put me straight onto a short tapering course of cortisone (starting at 30mg down to 5mg).

I think i could have cried with relief for once, finally something was actually being done! I felt like i was not only being listened to but also taken seriously. The first 3 or 4 days of this treatment has been amazing. I have been out almost every day, sleeping better, my blood sugar control has improved (wierd but true, he has some other interesting theories there), i have been cleaning like a mad thing, and have been able to THINK again! I even go to have friends over a couple of times, and not needing naps during the day.

I may have been too optimistic, thinking "ooh at this rate i'll be able to make it to at least one of those parties this weekend!", but yesteday I drtopped down to 10mg with noticeable affects. Today I am in a major deal of pain, lower energy, and annoyingly hungry! I am starting to feel like I wont be going anywhere this weekend.

Another weird side note, i have found when i am very sick i become TERRIBLE with money!!! I couldn't wait to save up for an iPad so i asked mum and dad to help buy it for me so i could have it straight away, which isn't like me at all. Even now i feel 'wanty' but not sure what *for*....maybe snacks.....but all my money is gone right now....my brother beast and i have been having fun with my energy and going shopping :P

For this post I get 150points because i have been wanting to post all week! I guess you can have 10 points too :P

Points Mean Prizes!

Now it's time for a prize for the points people have!

Yes, it's a sleepy Griff! Nawwwwww <3  Lookit his widdle paws!

I'm still recovering from NYE party (swollen feet and knees and for none of the fun reasons) , but hoping to keep this blogging thing up!

Happy new year everyone!