Journeying/Journalling

Things are going well generally, although not any better physically.

My new flatmate, henceforth to be known as Flatmate2, will be moving in this weekend. This is a stressy thing, but I really think it will be positive in the long run. Flatmate2 is very different from Flatmate, first she's female! She's also older than me, and a computer geek who loves cooking and cats. Does it get any better than this? We've spent some time together untangling a huge basket of balls of wool and worked together well and chatted while doing it. I think untangling wool is a very character revealing exercise, and I like what I saw. Have high hopes!

Silly old Flatmate's bike is still chained up to my back ramp, in an unusable condition because he's left it there so long the rubber in the tires has broken down. I can't even toss it as it's got a decent bike lock on it. I guess he'll get it eventually.

Still sleeping or being sleepy so much I can hardly get anything done, but I've managed a few articles on ATMac and some work on No Pity City. Would love it if friends would pimp the latter, too. It's much changed from the old No Pity Shirts :)

Note: AniCat would like me to let you know that a DOG visited yesterday and he is MOST DISPLEASED that I let it into the house. First we rudely shut him in the bathroom while DOG was here, and then when he was finally released he was forced to do his bottlebrush-tail thing because of the indignity of DOG smell everywhere. He would like to lodge a complaint, but can't sign the form.

I have drastically pared down my LiveJournal and Dreamwidth reading lists over the past few weeks. Be assured it's just that I don't have much blog-reading energy at the moment and not that I don't love you! And I don't ever lock posts, so you're still able (and very welcome) to read everything. What little energy I have is going into creating rather than taking in at the moment, and I quite like that ... although the amount of fanfic in my "to read" pile is rather alarming!

Think that's all for now.

Please send spoons!

Love,
r

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This is a Claytons update because I don't have the energy for a real once. Hence point form:

• I don't have mitochondrial disease. This is very very good, but leaves me with the diagnoses of ME/CFS, Ehlers-Danlos Syndrome, and all the associated complications like NMH, POTS, etc., which are sorta sucky diagnoses as doctors will run a mile to avoid a patient like me. But I don't have mito, so there's hope for me yet!


• I do have a bunch of whacky spine weirdnesses which I don't quite understand. I have to go see a spine doctor about it - it showed up in the spinal cord part of my MRI, and the PDF of the report will be up on my website for a few weeks at least. Can any of you medical people explain it all to me? Don't have enough spoons to look it all up!


• I seem to have Yet Another Virus which means I have now been sicker-than-usual for one reason or another constantly since the end of March. Ugh! This is Not Fair and also has meant there have been no new ATMac posts for ages. Grrrrr. Stupid world, gimme a break!


• AniCat was sick yesterday and scared the daylights out of me - lethargic, not interested in eating, etc. - but is fine and bouncy today and eating and eliminating normally. Thank heavens! I always get so scared when he's not healthy because doing without him is a terrifying idea.


• Doing quite well without Flatmate - not too lonely or down, I don't think. It's more scary on days like today when my carer roster is disturbed because somebody's sick and it's difficult to find a replacement, but I'm doing OK. Also being so sick the quietness is mostly welcome! On the other hand, much looking forward to new flatmate too! I think I'll have to name her Flatmate2 for journalling purposes so she doesn't get confused with Flatmate!

That's all. Zonked. Fall over now.
Ricky

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(alternate title for this entry: Very Random Things Make A Post)

OK, status report. Trying to focus ...

Flatmate has now moved out - he found a place and moved last weekend. I suppose I should now refer to him as Flatmate1 or something, since Flatmate2 will be moving in at the beginning of July or thereabouts.

Flu + Hospital + Flatmate moving out without recovery time in between = Very Sick Ricky.

Haven't been able to keep up with any regular stuff, although I managed to finally finish No Pity City so it's now open for business. The old website address (nopityshirts.com) redirects there now, and pretty much all the old web pages should redirect to their new versions as well so bookmarks and links should be fine.

Need to make the DW accessibility team more organised, but at the moment I can't organise myself out of a paper bag so that's on the back burner.

Also can't post in organised fashion. Haven't managed to get ATMac articles out as they require far more actual thought than mucking around on No Pity does!

Managed to forget to wish thorfinn a happy birthday on Friday - hope it was a good one, Thorfy!

Have been sleeping 12-13 hours a day, but also spending most of the remaining time not fit for anything except random conversation with people who are fluent in Ricky-ese, and listening to easy-to-follow audiobooks. Mostly shortish podfic and re-listening through assorted Lois McMaster Bujold and Robin Cook (who I thought was female until very recently!). Brain cells may be lost behind sofa - please send search and rescue team. I miss my brain cells.

Am hoping very desperately that all these flared up symptoms are just aftermath of flu/hospital/moving stuff and will calm down back to "Ricky Normal" in a few months. Terrified they won't and for now it's The New Normal (hi Chaz!). Meeting with specialist about hospital test results on 4th of June, perhaps that will shed some light or offer some helpy things.

Just tried to phone my folks and got both an answering voice (who obviously couldn't hear me) and a dial tone on the line when it picked up. The phone lines at their place really suck!

Think that's all. Oh, have had to prune reading lists on DW and LJ drastically due to non-functioning brain cells. Please don't be offended, it's nothing personal. And remember that posts on my journal aren't ever locked so you're still very welcome to read here!

Cheers,
Ricky

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I got a card in hospital from the internet!

( You really want to see this! )
Love you all!!!
Ricky

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Wonderful things about being home which I have noticed in the past 22 hours I've been here:

• It's quiet! I can turn off my computer and bed pump and aside from the birds in my garden and the traffic from the road (which isn't too near, thankfully) the only sound I get is the fridge when the motor comes on. Silence is golden golden golden!


• It's dark if I turn the lights off! Darkness for resting eyes with no eye mask is wonderful!


• It's peaceful ..... oh so peaceful .... no bustle of people in the corridor just metres from my bed, no medical emergency on the other side of the curtain. Just me and Flatmate and the cat. Ahhhhhhhhhhh .... *relaxes*


• People know me! The people around me know what I need and want and like and know how to interpret my communications. And I don't need to tell them as much because they know me already.


• Food! Edible food! Even Flatmate-made food which (being that he's a trained chef) is heavenly and I am so spoilt and going to miss him so so much when he moves out soon.


• CAT LOVE! No more needs to be said.

Home is nice. Good to be here. Recouperation ahoy!

Ricky

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Dear Friends,

Home from hospital a day earlier than I suspect and all in one piece! Well, except from the bit of muscle they biopsied, technically :)

No results in yet except that the EMG picked up myopathy. Not sure if that might be possibly caused by inactivity though (anybody know?). I'll get the results from the specialist next month when I have the followup appointment yet.

Tiiiiiiiiiired ... had very sick and/or demented people in my 4-bed ward making a huge racket all through 3 of the 4 nights I was there. Plus there's the standard hospital guff where they wake you up at all hours of the day and night to stick needles/thermometers in you and take blood pressure. Who ever had the bizarre idea that hospitals are any good for sick people to be in, again?

So yes, am home. The internet sent me a very nice card too, signed by tons of friends from all corners of the globe. I have no earthly idea who physically wrote things down and posted it though! Thank you all :) Will put some pics of it up when I get some spoons - it's pretty.

That's all. Going to cuddle my cat now - he's only able to hold a grudge for about 20 minutes max, so I am forgiviven for being Evil Abandoner and he's making sure every inch of me is properly re-annointed to smell like him. Yay for kitty cat headbutting!

*droop*
Ricky

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I'm going to St Vincent's hospital on Thursday (30th of MayApril) for the tests that the very nice neurologist I saw wants done. I'll probably be there until Tuesday, I'm told, so I'll be not-here for the weekend when the May Stitch & Bitch should be happening.

So yes, there is NO Stitch & Bitch this weekend.

I'm just starting to recover from the flu and secondary infections I've had for the past 3 1/2 weeks, so I'm very run down and sleeping a lot more than usual. This is actually good in terms of the tests - having them when my system's more stressed than usual makes finding a result more likely. But it also means 5 days in a noisy hospital ward being poked, prodded, anaesthetised, and chopped up will be harder than it would otherwise be. The recovery time afterwards ... well, no idea really. Might be a month, might be six, might be never. Hopefully on the shorter end!

Anyway, despite how this sounds I'm quite cheerful! ATMac reached the milestone of its 2nd birthday last Thursday which was fun!

That's all I can think of for now. Be safe, all of you.

Love,
Ricky

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We have two new disability-related communities on Dreamwidth for your perusal:

no_pity is for all people with a disability of any kind, including those with chronic illness, physical disability, sensory disabilities, dyslexia/specific learning disabilities, intellectual disabilities, or anything else disabling. I'm co-maintaining this one with hilarytamar.

dw_accessibility is the official Dreamwidth Accessibility community (all Dreamwidth communities beginning with "dw-" are official by the way). We're still nutting out what it will be used for but I am feeling really good that we can put together lots of resources which are helpful for journallers and journal readers and style designers and everybody else, and we'd love to have you along for the ride!


In other news, I still have the flu and there's still no confirmation that the hospital will have a bed for me for next week's tests. In other words: Life goes on as normal :)

r

This entry was originally posted at http://rb.dreamwidth.org/254006.html. Please comment there using OpenID.

This is a test of the magic Dreamwidth cross-posting thingy which is being ... umm ... tested. Yes, that.

You'll have to pop over to Dreamwidth if you want to leave a comment, but just use your LJ account to log in via openid (Your openid ID is yourjournalname.livejournal.com eg rickybuchanan.livejournal.com - note it's all dots, no @ sign) or just leave an anonymous comment and sign it.

Testing 1 2 3...

This entry was originally posted at http://rb.dreamwidth.org/253822.html. Please comment there using OpenID.

The open beta date for Dreamwidth has been announced - 30th of April. So I'm talking about it again! I'll try not to babble too much but no promises.

Luckily I have cool friends who write cool stuff so I can just link to them! vassilissa has written about why Dreamwidth is cool and Zvi has helpfully written how to get your own Dreamwidth account.

One of the people who runs the show, synecdochic, has written a cool fact sheet about the current state of Dreamwidth, including the parts that aren't finished yet.

As I've said before, I'll be buying a seed account if I can get in quick enough, and since I've been a closed beta person I'll have invite codes to give out.

After open beta is launched, I'm also going to buy a one month paid account for anybody on my friends list who wants to try Dreamwidth but isn't certain enough to put down money on it. After the one month of paid-by-me time expires expires you can keep the account at 'free account' level if you don't want to pay for it, or you could pay for it yourself to keep the extra features. You can also buy your own one month account for just US$3 if you want to - no invite codes are necessary for paid accounts.

I'm utterly serious about this - if you'd like to try Dreamwidth then leave a comment or send me an email/message with your details. I'll either send you an invite code or a prepaid account, and I'm totally happy to do either of those things.

I believe in Dreamwidth.

I'm working hard to help Dreamwidth be as accessible as possible.

I know lots of you have networks of friends here on LJ and are reluctant to move until they move. Well, somebody has to be first for that to happen - why not you? And you can buy 16 1-month accounts for US$50. Do you really need more friends than that to shift? I like the idea of buying people gift accounts to entice them to move ... bribery is fun when it involves giving your friends presents!

So who wants to play?

Love you all,
Ricky

[EDITED Monday 6 April to make it more clear it's me who'll be paying the US$3 for the paid accounts.]

The sixth 1st monthly Stitch and Bitch (aka Craft and Chat) afternoon will be held over here this Sunday the fifth of April.

Sorry for the late notice - have been rather sicker than usual. Given that, please check with me on the Sunday morning at some point after 10:30am (via either phone or instant message - email/SMS may not be read as I forget) that it's still on. If you get no answer on IM try the phone, if you get no answer on the phone, please assume it's NOT on because I'm too sick to even talk. :(

All the other details are as usual.

I have awesome craft work to show off, too, so I hope I'm up for it!

Please leave a comment if you're planning to come so I know if there's anybody.

Cheers,
r

I'm very badly crashed at the moment. I think it's mostly from my hospital appointment a week ago, with an added dose of stress from Flatmate starting to look for places to live when he moves out, and the weather being crazy.

It's surprisingly stressy having Flatmate start to begin moving-out preparations ... I knew he would be leaving in April or May or soonish, but he's been here for more than 2 1/2 years now and somehow I'd relegated it to the "indefinite future" category. I feel like it's gone from "way in the future" to "right now" in the blink of an eye He's discussing agents and references and will be moving out as soon as he finds a place, although with renting that could be this weekend or in four months. Not knowing when is unsettling also, I like timetables and schedules and routine and this is the exact opposite of that.

The hospital appointment was with a neurologist at St Vincent's who's experienced in adult onset mitochondrial disorder, which is what it's suspected I have. She was visibly rushed but spent an hour with me and listened to what I said so I felt very much heard. She thinks that even given the previous negative test results of MRI and EEG that there's a very high chance I have mito. She wants to run lots of new tests which amazed me - mostly that there are tests I haven't had! Having had so many I rather thought I'd run out of new tests. Did you know they do MRIs on muscle tissue too? (does anybody know what kind of abnormalities would show up?) And she wants to do the muscle biopsy also. We decided that for the tests it's best to put me in hospital again for however long it takes to do them - should be 3-5 days.

At that point I cried on her because last time I ended up in hospital it was rather a disaster at the end and I was treated very badly by a consultant. She was horrified that anybody should treat a patient like that and said the St Vincent's doctors had much more experience with mito and she would make sure her resident oversaw my admission even if she wasn't my treating doctor. So I am reassured and we have started organising the hospital stuff, which depends mostly on when they can book the MRI machine which apparently is backed up. It should be 2-3 months at the most, apparently.

Then we had to wait another 4.5 hours for the transport ambulance to take me and the PCA who accompanied me back home. While waiting in a spare treatment room (so I could lie down) we discovered the cheese sandwiches were mouldy so I had no lunch. The PCA had half a roll of Oreo biscuits however and willingly shared, so in return I showed her the Approved Oreo Eating Method of eating the biscuit part separately from the icing in the middle. She's only been in Australia about a year, so she hadn't known about this and was much fascinated.

Eventually we got home and I was rolled back into bed and have felt like crap for the week since. But that was expected.

Expected doesn't make it easy to deal with, although it helps some. I was busy feeling sorry for myself tonight when I stumbled across a website for a little girl named Hannah. She's got a really rare metabolic problem called Gaucher's disease - her Mum's made a video which I'll link to. Warning - it's very confronting:



No transcript of the video is available, but much the same information is available in text on her site.

Reading about Hannah and her family didn't make me stop feeling sorry for myself, but it did give me a bit of perspective exactly when I need it. There are lots of good things in my life.

Love to you all,
r

Sorry, NO stitch & bitch on Thursday the 12th - I have a hospital appointment and will be otherwise occupied!

The usual first Sunday in April (the 5 April) will be on. Might have a mini one before then depending how I recover from hospital.

Sorry for mix ups!

Ricky

Go trot over to the NASA website and vote for your favourite name for the new bit of the international space station. Much to my browncoat joy, the name "Serenity" has 84% of the vote so far ... the next most popular name is "Earthrise" with 6%. I am happy. GO VOTE!

(And if you don't vote for "Serenity", I'll still love you but I may also subject you to Firefly marathon viewing until you go change your vote... Ahem.)

The sixth 1st monthly Stitch and Bitch (aka Craft and Chat) afternoon will be over here on Sunday the first of March, as per the usual schedule. All the other details are as usual.

Flatmate is due home from his month in India on the 1st of March, so we may see a shambling horror just off an international flight come through the door. I'll make sure there's a shower and a horizontal space for him to sleep on though, because I'm nice like that. :)

The seventh 1st monthly Stitch and Bitch will be on Thursday the 12th of March, on account of some people can't do weekends. Also, because I felt like having more of them. I'm thinking there'll be one on the first Sunday of the month and then another the Thursday week afterwards from now on if it works well - stay tuned.

- Ricky

PS
Computer is screwed really really badly and needs Leopard re-installed. Unfortunately I have lost the bloody disks so had to order replacements from Apple. Hence, anything computer related from email to blogging etc. is currently likely to crash at any point and some programs are even refusing to start. If I suddenly disappear, assume computer failure!

I got my iPod Touch today!

Yay!

Thank you very very much to all of you who contributed. There was enough extra money to buy a case to protect it from bumps as well as the iPod Touch itself. I don't have the case yet though, so I'm still being Very Careful.

Thank you some more :)

r

This is another part in my effort to document resources I've used to stick to the migraine-friendly elimination diet in the cheesily titled but effective-for-me book "Heal Your Headache: The 1-2-3 Guide" by Dr David Buchholz.

( Read more... )

Cheers,
Ricky

G'day friends,

I've been meaning to post this for about 6 weeks now and haven't had the spoons, but better late than never ...

( Dreamwidth rocks: Here's why... )

I'll be moving my journal to Dreamwidth as soon as I'm able to, and I'm saving up to be able to purchase a permanent account - exchange rates willing. I'll certainly be there as soon as there's an open beta, possibly even in the closed beta phase. I don't post stuff friends-locked so it won't make any difference to those of you on LiveJournal - I'll make a feed for my journal and you can still read stuff on your friends page as normal, and you'll be able to comment on DW using OpenID with your LiveJournal account. But nonetheless, I hope that lots of you come with me!

Cheers,
Ricky

The fifth Stitch and Bitch (aka Craft and Chat) afternoon is going to be early on account of my birthday. Also, my weekends are rather busy at the moment, so as an experiment I'm holding it on a Thursday afternoon for a change.

The date will be Thursday January 29th. All the other details are as usual.

Be there or be square!!

- Ricky

During very first Stitch & Bitch ever, Jacinta showed us a quilt she was edging. The quilt was made of patches of pairs of "old favourite" jeans which were pieced together. It was stunning and I fell in love with it immediately!

( so I'm making one with T-shirts... )

r