Journeying/Journalling

I have been spring cleaning. This house still has more furniture than fits in here so I am getting rid of some bits. There will be smaller things added to this list but I think this is all the biggish things:

Tall MDF bookcase with white laminated surface. Approximately 1m wide and 5 (adjustable) shelves tall. Ikea-ish in style but don't know where it was actually bought.

Queen size mattress, inner spring. Has rather a dip in the center but otherwise in good repair and good quality.

Pedestal fan, approx 4 feet tall. Mains powered. Currently rather dusty and in need of a wash but perfectly functional.


Anybody who wants any of these, it's first come first served. You'll have to pick things up - drop me an email or comment or phone me if you want to arrange a day and time.

I love spring cleaning!

Cheers,
Ricky

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have discovered new basic law of universe:

if you record n episodes of a tv series, where n>1

the final episode recorded will always be "to be continued"

and ricky will go mad

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I wrote before about my T-shirt quilt, inspired by a Jeans Quilt made by Jacinta. All the machine sewing of the squares is done now, and my aunt has helpfully blocked it out onto the backing we're using which is actually a duvet cover made of T-shirt material itself. It looks impressive...

( Impressive pics here )

I am loving this quilt very much!!! Can't believe it's been over a year in the making already and I am still both working on it and adoring it. Yay!

- Ricky

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Because I suddenly feel like it ... the Seventh 1st Monthly Stitch & Bitch will be on at my place THIS WEEKEND!

Both Saturday and Sunday, from noon to 4pm or thereabouts. Let me know if (and when!) you plan to come.

Details are as usual.

If you are reading this, you're invited.

r

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A friend of mine, Nicole, is going to be evicted if she can't enough money to pay the lump sum owed on her rent backpay. I've known her many years online and trust this is not a scam.

You can see the eviction notice and Nicole and Diamond on her own blog.

Nicole's disabled by spina bifida occulta so she uses a wheelchair and scooter, and she has a bunch of related medical issues. On top of that she has to deal with panic attacks for which she has a service animal - Diamond, a gorgeous and amazing cat.

The reason Nicole owes this money is long and complicated and involves several paperwork mess-ups by different people. One of the paperwork problems was Nicole not submitting some paperwork on time; she was dealing with not having a functioning scooter at the time and one crises overshadowed another; and by the time she became aware of it, the 60 day appeals period had passed.

She wasn't notified in writing by her landlord of the extra rent due until nearly 8 months later, by which time $5,000 in back rent was owed. Nicole's been paying extra rent to slowly repay the sum (not easy when living on USA disability payments!) but apparently the landlord doesn't think it's being paid off fast enough and has decided that evicting her is a better option.

She's tried long and hard to find a job and earn money but that's hard enough for anybody at this point in time - for somebody with multiple disabilities it's basically impossible.

She's raised over $700 of the amount herself, but time is short now. She didn't ask for public help before because she wanted to deal with it herself - who wouldn't? If you can spare a dollar, or a few dollars, please do. I know that when she's able, Nicole will pay this forward in all the ways she can.

Facebook fundraiser app

Blog post with Paypal link and details for donating direct to her landlord if you prefer

I love you all. I really wish my friends didn't have such rough times to deal with.

Hugs,
Ricky

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A bunch of people have linked me to articles about research documenting the presence of the XMRV retrovirus in CFS patients. Most of the articles are flat out stating that this will probably lead to a test and/or cure for CFS.

( Cut me explaining that correlation does not equal causation )

Ricky

ETA:
The previous-to-this "big thing" for CFS was the hydrogen sulphide urine test, here's an example article: ME: Proof that it isn't all in the mind?. If you look hard enough on the ProteaBioPharma FAQ page - they're the company marketing the test - this is now watered down to this:

Our preliminary results indicate that a strong proportion of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) patients present such dysbiosis, and test positive with the NMT test.

Incidentally, I took the test last week and I test negative. The sickest person I know with CFS also tested negative. So ... take of that what you will.

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I just realized I've been messing up the crossposts between Dreamwidth and here. If you just read my journal via LJ you probably should wander over to http://rb.dreamwidth.org/ and check out the last six posts.

Oops... sorry ...

r

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

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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...

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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