Journeying/Journalling

Status Report

Wed, 24 Jun 2009 12:29:54 GMT

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

This entry was originally posted at http://rb.dreamwidth.org/256662.html. Please comment there using OpenID.

Claytons update

Tue, 09 Jun 2009 14:37:31 GMT

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

This entry was originally posted at http://rb.dreamwidth.org/256286.html. Please comment there using OpenID.

Status Report

Sat, 23 May 2009 12:24:28 GMT

(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

This entry was originally posted at http://rb.dreamwidth.org/256253.html. Please comment there using OpenID.

Fri, 08 May 2009 09:24:56 GMT

I got a card in hospital from the internet!

I know it's from the internet because it says so, see (click for larger sizes):

And if it's from Teh Interwebs then in must be true, right?

The poor hospital people got a bit confused because Teh Interwebs is obviously rather prescient so the card reached the hospital before I did:

It was a very very beautiful card with feathers on the front:

It was a very happy-making card, and I took it in and out of the envelope so many times that the feathers fell off in the end! Inside there was a list of all my #dw IRC channel friends who had conspired to send it to me, including of course the channel robots:

I was feeling very alone when I received the card on the Friday - knowing that the Dreamwidth open beta was happening almost at that exact time and I was missing it. I opened the card and burst into tears because there were so many friends saying they were thinking of me - it really made me very very happy. Thank you to all the conspirators, and all of the rest who I know would have participated if you'd known it was happening.

Love you all!!!
Ricky

This entry was originally posted at http://rb.dreamwidth.org/255423.html. Please comment there using OpenID.

The Wonderful Thing About Homes...

Wed, 06 May 2009 04:41:30 GMT

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

This entry was originally posted at http://rb.dreamwidth.org/254832.html. Please comment there using OpenID.

Home again home again jiggity jig

Mon, 04 May 2009 09:11:25 GMT

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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Hospital = No Stitch & Bitch for May

Tue, 28 Apr 2009 13:39:12 GMT

I'm going to St Vincent's hospital on Thursday (30th of ~~May~~April) 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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New DW Communities

Wed, 22 Apr 2009 03:22:32 GMT

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.

Test!

Mon, 20 Apr 2009 12:02:43 GMT

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.

Ricky Buchanan

Thu, 09 Apr 2009 05:54:20 GMT

Buy merch from No Pity City at www.zazzle.com/rickybuchanan*

[Copy this widget to your profile]

Dreamwidth - Dream big!

Sat, 04 Apr 2009 13:53:35 GMT

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.]

Stitch and Bitch (aka Craft and Chat)

Wed, 01 Apr 2009 20:55:58 GMT

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

Status Update, etc.

Thu, 19 Mar 2009 13:31:19 GMT

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

Oops - No S&B on 12th

Mon, 09 Mar 2009 01:43:25 GMT

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

Stitch & Bitch, Serenity

Thu, 26 Feb 2009 11:31:15 GMT

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!

Happy Birthday To Me!

Sun, 22 Feb 2009 09:49:56 GMT

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

Finding Migraine-friendly Recipes

Sun, 01 Feb 2009 11:39:43 GMT

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.

Using the advanced search engine on the Meals for You website, it's easy to search for recipes which are likely to be migraine-friendly with these steps:

1. Open up the Meals for You advanced search page.

2. On the web page's section "1", type or copy-and-paste this into the box marked "exclude":

onion parmesan cheddar avocado bacon wine beer banana raisins raspberries

3. Under the "Special dietary needs", tick the boxes to exclude these:

peanut products

tree nuts

citrus

caffeine

chocolate

Also tick any other boxes which apply to you - I've ticked these things which don't agree with me:

soy products

tomato

eggs

4. Add any other one-word foods you can think of to the "Exclude" box you filled in step 2. Note that two word foods such as "tasty cheese" won't work - it will exclude anything with the word "tasty" AND anything with the word "cheese" - probably not what you want.

I haven't found any way to deal with foods with more than one word, unless one of those words only happens with that specific food - such as using "parmesan" to exclude "parmesan cheese".

5. In the next step, choose any desired nutrition levels. You may like to tick the "low" button for sugar or salt, for example, or the "high" button for fibre.

6. Choose any preparation time limits you want.

7. Click on the "Search" button near the bottom of the page but beware - you're not finished yet!

8. When the results page has loaded, it will have used your "exclude" words from step 2 to only exclude those words in the titles of recipes. We need to exclude them in the ingredients - click on the "search ingredients" button to do the search you really want.

It happily surprised me that even with all the exclusions I'd put in, the site still had 302 recipes for me. I was thinking there wouldn't be many left after I took out all those ingredients!

9. If you want to now narrow your search further, put words you want to search for in the "Include" box or extra things to exclude in the "Exclude box" and press "Search ingredients" again. The search will remember your other preferences as long as you use the same search page.

Caveat: Be careful with the results - they are not guaranteed to be migraine friendly recipes.

Some of the things that the migraine exclusion diet excludes are hard to put in a list like this - "MSG" for example is never on a recipe ingredients list but may or may not be included in the chicken stock you purchased to use the recipe with. Use your common sense and check each recipe and any purchased ingredients as you would any other time.

So why bother using a search like this? It gives you recipes which are more likely to be migraine-friendly, or easy to adapt to make them migraine-friendly. It also may give you ideas for new ingredients, or new ways to use old ingredients - I've never cooked artichokes before, but one of the recipes uses artichokes. Perhaps I'll like them!

Cheers,
Ricky

Dreamwidth: What it is, Why I'm moving

Fri, 23 Jan 2009 14:11:02 GMT

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 ...

LJ users have probably heard about the recent layoff of half the US-based staff which triggered a week or so of "is LJ about to disappear?" fear. Well, LJ isn't about to disappear but I really don't have any faith in its long term future as a home for me and this journal. The reasons are complex but rho summed them up pretty well in the first part of her post "On LiveJournal and Dreamwidth."

And in the second part of the same post, she pretty much said most of what I feel about Dreamwidth as well (thanks, rho - you saved me spoons!).

Why is Dreamwidth special and not another InsaneJournal or DeadJournal or GreatestJournal?
The best in-one-place explanation I can find is on the Dreamwidth Advocacy page. Go read all of section one :).

Why do I have faith in Dreamwidth?
It's run by people who know what they are doing on a business/management level as well as a programming level, and they both have worked for LiveJournal for a long time in the past. They've published all of the financial data about how they're going to run Dreamwidth and make it viable in their Business FAQs for those interested in that sort of thing.

As well as xb95 and synecdochic there already more than 20 volunteers actively working on Dreamwidth, programming or writing documentation or doing other tasks. I'm semi-actively working on small tasks, as my health permits. You guys know I don't spend spoons on stuff that isn't special to me.

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

Fifth 1st Monthly Stitch & Bitch - Jan 29

Sun, 18 Jan 2009 13:38:23 GMT

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

T-shirt Quilt Takes Shape!

Thu, 15 Jan 2009 03:18:23 GMT

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!

It just so happened that my cupboard has been full of "old favourite" T-shirts which I can no longer wear but also can't bear to part with, so a plan formed itself in my brain. Later on, socks were added to the plan. And it kept getting more byzantine as we went along.

Also, the not-yet-made quilt kept getting hypothetically larger. Eventually it's ended up with 20cm squares (once they're sewn together - they're 22cm squares at the moment) and 10x9 rows, plus any border which we add. Yes, this is excessive. I'm thinking I can leave it on the double (or is it a queen size?) bed which I use as a sort of sofa in my room.

Today we finally finished sorting and creating the squares and laid it all out on the floor for the first time! I had the pattern more-or-less in my head but this was the first time we could actually see it. And the first time that Asma (my PCA who's done almost all of the hard work) could see what had been in my head. We were both thrilled with how it looked laid out on the floor so we took an excessive number of photographs. Here are two - they're biggish so I'll just link rather than including the photos:

T-shirt quilt overview - if it were any bigger, it wouldn't have fit on my floor!

T-shirt quilt detail - a slightly closer view of part of it. The blocks which are made up of four smaller blocks are pieces of old socks I've loved and lost the pairs for!

Each piece is now carefully marked with it's place in spreadsheet fashion, so my floor has been reclaimed. I can't wait to get this baby finished :)

r

Birthday Request

Mon, 05 Jan 2009 05:51:28 GMT

This is me letting people know what I want for my birthday, because I keep getting asked. No, I don't expect anybody to give me anything but should you want to, please see below :)

This very very big wish comes under the "don't ask and you definitely won't receive" theory of life!

For my birthday I would very very very very much like a (refurbished) 2nd generation iPod Touch. The businessish reason for this is that more of the ATMac stuff is about iPhone or iPod Touch programs and it would let me actually review them instead of just writing what the developers tell me is true. The personal reason is it's a very very very very very very very very very cool geek toy. OK I'll admit it, I'd probably still want one even if I couldn't justify it businessishly. But this way I can feel all warmfuzzy and justified about it too :).

If you would like to contribute to the "buy Ricky and iPod Touch" effort my Dad, Colin, has kindly offered to accept donation-type-gifts on my behalf, and buy the gadget when he has fleeced you all ... err, collected gifty donations. I'm not sure he quite realised he had to do all this in four weeks when he offered, but that's his problem now *grin*. If you don't already have his contact details just leave a comment and I'll send you his email address - don't want to put it out in public.

BTW, I won't ever know how much each person contributed - just that you did. Or anonymous is fine too.

ETA: We has a Paypal! Gifts can be sent to frayah@gmail.com and please put "For Ricky's Birthday" or similar in the comments!

Also, my wishlist for other things is http://www.thingsilove.org.uk/wishlist/

Cheers,
Ricky

Fourth 1st Monthly Stitch & Bitch - Sun 4 January

Sat, 27 Dec 2008 02:32:03 GMT

This month's stitch and bitch (aka craft and chat) is on the ~~3rd~~ Sunday the 4th of January at midday.

For those who come regularly, note that next month's might have to be shifted to a different weekend because it's my birthday on the 3rd of Feb. Also, I had a few people request an extra S&B at a different time and day - if you can't manage Sunday afternoons, leave a comment with what would suit you best. I might have an extra one, or something.

I figured it's about time I actually reposted the stuff I wrote the first time and updated it, so here you go:

What?
Just low key social stuff and bring along any knitting/stitching/art/craft stuff you'd like to do while we chat. I don't do anything that involves being stressy, so it'll be very laid back. If you don't have any art/craft stuff, that's cool - showing up to just chat is fine too.

When?
You're welcome to turn up anytime after midday and stay until I kick everybody out - which is usually around 4pm, depending on everybody's levels of health and ability (including mine!).

Who?
YOU.

Seriously, anybody who wants to come, even if I don't know you really at all! New friends are always welcome. If you can make it to near St Kilda on the right day you're welcome.

Where?
Contact me ASAP via any of the ways listed on my userinfo page if you need directions - I can provide phone number and address and public transport type directions. We're very near public transport of all types.

Caveat Salutator
(this is my probably bad fake latin for "Let the Visitor Beware")
As you probably know if you're reading this, I'm perpetually sick. So this might end up having to be called off at the last minute. I suggest you phone me just before you start getting ready to leave to check I'm still OK for visitors. I know it's crap that visitors have to deal with this level of uncertainty, but that's just my life. I won't even know the night before if I'll be healthy enough to cope with visitors.

Access Stuff
This is a ministry of housing flat set up for wheelchair users, so it's fully accessible to wheelchairs and mobility devices (all entrances plus kitchen and bathroom). We're smoke free and relatively scent free but there is a Burmese cat here who persists in cuddling all visitors.

NB: The scent-free part means please don't wear perfume of any type, and wear the absolute minimum of deodorant of it has any fragrance at all. Preferably, use non-frgranced deodorant.

Any other access-related stuff, just ask.

Whose fault is all this anyway?
synecdochic started having them at her place and I got all envious I couldn't go so I started my own. Plus, well, it seems like a cool idea to have one on the same day an LJ friend in the USA is having one. Distributed eventing is the next big thing, y'know!

Any other questions, just leave a comment or contact me any way you can.

Hope to see you there!

Cheers,
Ricky

About Em

Tue, 23 Dec 2008 12:06:58 GMT

Those of you who've been reading this journal for a while will remember em_30 - Em and her mother, Anna - who used to leave comments here and chat with all. Em had a very severe progressive mitochondrial disorder and was very seriously disabled and deteriorating last I talked to Anna. I hadn't heard from or about either of them for a long time until this morning.

Ellie Fitzpatrick from the MitoMoms group was kind enough to let me know that Em has passed away as home, which is exactly where she wanted to be. For somebody who was supposed to die about 26 years ago, she beat the odds bigtime. My deepest sympathies to her whole family.

Ellie wrote:

Please feel free to e-mail Anna, but her response may be slow. This appeared in our Muskegon paper. I will link to the obituary when I have somebody who knows how here.

And she also left the article which I've reposted below. Ellie, if you read this you can link to the obituary just by leaving the web address in a comment. And thank you so very much for letting me know.

I'm not sure exactly which newspaper this comes from - I couldn't find it in a web search today - but it's a great article, it really catches Em's spirit I think:

Emmaline Isobel Marie Maclione always said she would not be caught dead at her funeral. “That never got old for her,” said her mother, Anna. “And Em had such a funny laugh, we laughed anyway.” The laughter is stilled. Emmaline, “Em to my friends,” 32, died Thursday at home after a lifelong battle with Mitochondrial Myopathy. This extremely rare neuromuscular and metabolic disease makes cells unable to produce energy.

Any body system affected will malfunction, and eventually stop working.

The earlier symptoms appear, the more severe the illness becomes. “It is a pretty devastating disease,” said Dr. Mark Nangra, a neurologist at Children’s Hospital’s Muscular Dystrophy Association clinic, where Em was treated. “System after system fails, and all we can offer is palliation. We treat the symptoms, because we still have no idea how to begin attacking the disease itself. “I felt so guilty at appointments, because Em would have new manifestations, new involvement, and all I could offer was basically band-aids on a greater and lesser level.”

These “Band-Aids” came to include a wheelchair, ventilator and tracheostomy, a central line (a permanent IV line in the chest), blood, plasma and platelet transfusions, IV feeds, over 20 IV medications, a continuous hydromorphone drip, heart and oxygen monitors and 24 hour nursing. “No matter what she had to go through, if it meant more life, she was ready,” Nangra said. Em’s “floppiness” as an infant was the first sign of trouble. Her older sister, Danielle, 36, had shown Anna what infants were supposed to do, and Em just couldn’t. At six months, when she could barely splash her bath and still could not lift her head from the mattress, Anna knew something was wrong. “They told me she had Spinal Muscular Atrophy, and to take her home and love her. The prognosis was age two,” said Anna. They placed a feeding tube—a g-tube—to replace the calories she lost unable to suckle and put her on oxygen.

When Em passed two, doctors were puzzled as to what was causing the health problems that kept accumulating. “Atypical neuromuscular and organ disease” was the only answer they had, as Em began using a ventilator at age two, a power wheelchair soon after. As a toddler, she lost the ability to eat, and began taking nutrition only through her g-tube. Her body later lost ability to take food at all, and she switched to IV feeds through a central line. Her medications were also administered IV. When Em was ten, new testing techniques allowed doctors to look at a second muscle biopsy for characteristic “ragged red fibers” of dead mitochondria, and the diagnosis was made. “I didn’t get much comfort from the diagnosis,” said Anna. “Her doctors were pretty dismal on her chances.”

And on the one hand, they were right. Em suffered problems with her immune system, bone marrow, urinary tract, liver, heart—“It goes on and on,” said Nangra. “We’d put out one fire, and another popped up.” On the other hand, though, they were wrong. The family, devout Catholics, attended church with Em and Dani. She was there at first communion, there at confirmation. Em did mostly homebound schooling, but attended college with her ventilator, nurse and nine IV pumps trailing her powerchair. When she graduated with a B.A. in English, a multitude of friends, doctors and caregivers were there to see her accept her diploma.

She spent more time inpatient than out, but she had friends, plans—and love. A college friend became much more, and she and Tom Clark, an electrical engineer with Boeing, began dating. They were engaged on February 14, 2002—Valentine’s day. “Emmy had more life in her than anybody I’ve ever known,” said Clark. “And beauty.”

Unfortunately, in 2003 Em began suffering more cardiac and lung involvement—every bout drained her. “We knew,” said Anna. “She knew it was getting close.” Em still found ways from the Children’s ICU to stay in the world. Online life delighted her, as she met other people with health issues, and spoke to them free of the “trach voice” her mother described as her bane. Legally blind, she relied on special software to keep in touch with friends—but she did. In 2006, Em suffered another stroke and began to drift into the dementia (like senility in the elderly) characteristic of late stage mitochondrial disease. “She was not always aware of where she was or when,” said Anna. “She always knew those she loved and that she was loved. “That was always her greatest gift, the ability to love.”

Viewing and internment arrangements follow obituary space. The family asks in lieu of flowers for donations to Make-a-Wish, MDA, and the United Mitochondrial Diseases Foundation.

End of article.

I have made the donation requests into links for anybody who wants to donate.

I have other news but I'll save it for my next post - possibly another day. It's ironically appropriate in a way I know would make Em joyful on my behalf.

With love to you all,
Ricky

Stitch & Bitch on Sunday

Thu, 04 Dec 2008 08:43:58 GMT

Stitch & Bitch (aka Craft & Chat) is on again on Sunday. Same rules as before. Leave a comment. And if you need directions or something, please contact me IN ADVANCE so I have time to respond :).

This is short, sorry. Ask if you get stuck!

r

Tin Man?

Tue, 02 Dec 2008 14:07:26 GMT

Dear Flist Who Knows All,

Should I watch 'Tin Man'?

r
PS
You are wonderful. Yes, YOU.