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You might not want to read this post, it’s upsetting, sorry, but I needed to write it.

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Today I learned that you can be walking along the street, minding your own business, waiting to be picked up by your husband and suddenly be caught up in an emergency situation that you really, really weren’t prepared for.

Today I learned that I am not too bad in an emergency situation.

That I can keep my head and call 000 while being just a tiny bit freaked out.

I learned that even though a car door can be open for some time, and you’re sure the road is clear, a cyclist might appear out of nowhere having not see it.

That even when you are wearing a helmet, the impact of striking a car door with your bike and, the way that you hit the road afterwards could potentially end your life. Instantly.

That I can detach myself from seeing things that I can’t bear to see and just do what needs to be done.

That sometimes very lucky things happen, like a private ambulance driving by and stopping just moments after an accident.

Today I learned that time seems to drag in a sitatuion like this. Where is that other ambulance? It’s taking so long.

That it’s possible to resuscitate someone after they have not been breathing for what seems a very, very long time.

That it is such a relief when all of the ambulances and the police (and even the firies) arrive and you can give your statement and you don’t have to stand there waiting, not wanting to watch, any longer.

I didn’t want to learn any of these things today. I was just going home after a doctors appointment. I don’t even have any way of finding out if the cyclist will be okay.

I don’t know whether it’s possible for someone to be okay after something this serious.

I doubt it.

Life is a fragile, fragile thing.

See how long-winded and ranty I get when I talk about him? That in itself explains everything really.

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On Sunday we were subjected to another round of the emotional blackmail that the kids’ school uses to bleed us dry. Last year we declined to take part in the inaugural “we’ll frame your kid’s artwork and charge you $20 to take it home” art show but last year we didn’t have an easily heartbroken 6-year-old at school. Poss wasn’t thrilled about us not buying her handiwork but, because she is a big girl, she understood. There is no way on Earth we would be able to get Skunky (the child who wakes up in tears at 3am due to some random slight that occurred a month ago) to understand. We also couldn’t try to trick Skunky into thinking we’d just forgotten about the whole thing, Poss was singing with the choir to open the new school hall at this year’s art show so we had to go – and then we had to shell out $40 for both kids’ art.

To be fair, they were both lovely and we had fun watching Poss sing and oohing and ahhing over everyone’s art.

Skunky’s rainbow fish, or rainbow whale to be exact. Whales are an obsession he’s maintained since he was three. He’s got staying power.

Poss’ Mama and baby bird. I loved Skunky’s response to this, once he’d wrung from me the desired compliment (that I loved his best), he gushed about how beautiful he thought it was. I agree, she’s always been an obsessive crafter, our Poss. I can imagine how many hours she spent getting each piece of paper placed correctly, just as she did when she was four. She used to spend hours making sure the pages of her colouring book were coloured in perfect detail and inside the lines, no short attention span on that girl. You can almost see in my blurry photo that she’s included a darling caterpillar on a branch.

The big kids had spent the previous night at their Father’s house, this after he called Beefy (not me you’ll note*) to insist that he be allocated a weekend once a month for each of the kids so that he could spend time with them separately. I had to explain to Beefy (who would’ve realised eventually but is not to good at thinking on his feet) that neither child would be ordered to spend a specific weekend with their father at this stage of the game (about to be 13 & 16 respectively). Moron’s imagined that they don’t want to spend time together and that’s at the root of their refusal to go, because it’s not as though they live together  or anything. Stupidity abounds over there. As expected the kids were unimpressed with his demands and also promptly agreed to go over for the night, TOGETHER. He doesn’t seem to get that:

a) This is their home, where their things and their respective caves of solitude are

b) They now have social lives, social lives that happen on the spur of the moment. He lives miles away and both of the kids have friends within walking distance here

c) They often can’t really be bothered with his house. The stepmother, who can be lovely and hellish in equal measure, and the fact that he and the stepmother do not seem to understand social cues very well make it a difficult place to be. Teenagers (or tweens) can be very “meh” about things, not because they don’t care (although often they don’t) but mostly because they can’t be bothered, Moron and The Stepmother don’t seem to grasp this. The kids have been taken home from a restaurant because Rhu didn’t seem appreciative enough that they were out for tea, he didn’t even say anything (in actual fact he just had a headache). The Stepmother threw a tantrum and insisted they all leave without eating. In essence they have never treated the kids like people, rather they are little monsters to be controlled and cajoled. The Stepmother has a short fuse and it is very, very easy to upset her, to the point that she screams and cries. Moron tried to force Rhu to give her a present, kiss her and tell her he loved her to make up for cracking a joke about a cake she made. Mama’s can’t afford such thin skin, and in any case it was really a joke, Rhu likes her and wasn’t trying to be mean. Anyway, they just can’t relax there, they have to be on guard and they’ll only subject themselves to that so much – now that they really have a choice.

d) They are nearly 13 and 16 respectively. They have not lived with him since they were not quite 2 and 4. During the intervening years he has breezed in and out of their lives (mostly out) sometimes not contacting them for (many) months at a time and when he has been in he has caused them both great distress at times. We used to get Rhubarb home from his fortnightly visits in such a state, he was out of sorts for a week after each visit, tears and tantrums, tears and tantrums. We would work to get him on an even keel again only to send him kicking and screaming back to them again. It broke my heart over and over. Moron either believes he can magic a strong relationship out of his arse or he believes that he already has one with his kids and I am being all evil and chaining them to their rooms and refusing to allow them visits. Probably both. He is not a man with a firm sense of reality. He cannot, for the life of him, understand why the kids won’t have their friends at his house or have birthday parties there, he thinks it is because I’ve been badmouthing him. He’s given the kids both talks about ignoring my relentless bashing of him, which they thought was hilarious. I didn’t agree. He even managed to imagine he could hear me saying nasty things about him to the kids whilst he was on the phone to Beefy (because that’s totally a likely behaviour for me to indulge in).

Anyway, the kids are soldiering on and will visit him as they see fit, which has been the arrangement ever since we came back from the UK over three years ago. They shall remain completely ignorant of his carry-on in the background because that’s the way we’ve always kept it but in the meantime I might go gray with stress, oh hang on, already happened. As you were.

*A while ago Beefy stopped me from talking to him, mostly to spare me the stress but also a little bit because I sometimes lose my shit when I talk to him, just a touch. He does not inspire my zen. Moron has caught on to this over time and doesn’t ever contact me directly now. That in itself has brought about some “ishoooos” but that’s another post entirely.

Poor Time Management and Running, Running, Running

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I’m not keeping on top of things. I am trying to push myself as hard as I can during the day. I am still struggling with the concept that I can’t do things. Of course, I try to protect my body as much as I can but I just get so frustrated with the mess and the jobs left undone and, and. I think I’m trying to claw back just a bit of functionality, the amount of pain medication it takes for me to do that is immense but I suppose that’s just how it is. I am seeing the private pain sepcialist on September the 8th and I am just hoping, hoping, hoping that he will have some new ideas, my GP desperately wants someone to share the responsibility with, she’s a nervous wee thing.

Over the last couple of weeks I have written several part blog posts, I just never quite get the time, or  I suppose, the time and energy in combination to complete them. I have been missing my online life so much, I have to try harder to pull the time and energy from somewhere.

Skunky’s birthday was mostly good, the cake was really cool, if somewhat disturbing. What can you do though, when your six-year-old wants a zombie head on a plate for his birthday cake? He triumphantly chopped the head in half, shortly after this, to reveal the bright red contents.

I managed, with the aid of a bucket of painkillers, to keep myself going throughout. As a result of my charming mother I ended up in my room with a friend having a little weep. I always forget her capacity to be completely self-centred,  it’s wishful thinking that makes me believe she’ll be kind or helpful or supportive. Thanks to my lightning fast brain I had my retribution. I forgot her birthday yesterday until about six o’clock when I noticed that people had been sending their well-wishes via facebook. I had even been texting her throughout the day so it just shows how talented my brain is, I think perhaps Brain did it on purpose. Did you Brain? It never answers me, bastard.

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Finally the warm weather is making an appearance. Skunky had been agitating for a visit to the spooky trees (immense Moreton Bay Fig trees in Botanic Park) so we headed there for a picnic on Sunday with Poss, Skunky and Gecko (Rhubarb declined on the grounds that he would rather be alone at home and we suck, which was nice, 15’s a golden age). It was lovely and the kids had a ball climbing around on the tangle of roots.

And running. There’s something so beautiful about watching Gecko run, she’s very graceful, for a girl of 3, graceful and fearless. I adore this picture. I was watching her run with her hair trailing behind her and I had to capture it.

And now, I’ve done something terrible to my left shoulder (the bad shoulder) in the act of typing and if I don’t stop I fear it will fall off. Pain relief, here I come.

 

My body is a mofo part the millionth and how to get that pool of blood to look just right.

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It really sucks balls when I am too sick to blog or even spend time with the interwebs for more than a few minutes. I don’t have enough readers to float the notion of guest posters and such so my blog lies dormant. I have words, so many words, but I sit here muttering them to myself because the notion of getting out the laptop or iPad and sitting and concentrating so that I don’t prattle on and embarrass myself, well….

My body’s decided to issue a resounding fuck you, evidently it felt that all of the ongoing fuck yous were not sufficient. At my GP visit last week we were told that my most recent blood tests showed a further (significant) drop in my white cell count. Now my platelet is down too. I don’t know if that explains all of the shit my body is serving up but it might. Maybe not everything, the fact that I am getting virus after virus and that I seem to need to sleep and sleep and sleep, almost certainly.

Ordinarily I can do an hour or two of normal everyday activity before I have to rest, sometimes more on a really good day. Although that’s not ideal it means that I can kind of maintain the illusion of being functional, mostly for myself but also for my family. Do you know how it feels to have your kids watch you lie around and do nothing? To fail them in every little thing that you used to think made you a really good Mum. I tell myself now that all of the love is what matters, that they’ll know I tried and I wished for it to be different, that they’ll understand. There’s always that little bit of my brain that reminds me of my evil Nana (my Dad’s mum), Mum telling me how she took to her bed for a couple of years and did nothing. That tone of disapproval in her voice. Not that my Mum would win any awards for her mothering but that’s something else all together.

At the moment a walk to the bathroom leaves me exhausted and sore in more places than I can count. Regardless of how I feel I have to keep functioning to a certain extent, so my body and I are fighting. It tries to make me fall asleep at inopportune moments and makes sure I injure myself in carrying out the least demanding of tasks. Which is kind of normal but this is normal times a million.

This week, it’s Skunky’s birthday on Friday and we are having a party on Saturday. He decided not to have a school friends party so we just invited a couple of friends and grandparents, aunties and uncles along with a bit of my extended family. At the very least there will be 9 kids and 12 adults including our family. There may end up being more. I tried to keep it small. Clearly I failed. Have I mentioned that our house, especially the living space, is tiny. Ti. Ny.

When you mix together the fact that I have been sick & the house is a sty, the fact that I have promised Skunky a red velvet zombie head on a plate cake (no school friends to offend) and the fact that I can’t have a party unless everything is clean & pretty & the food is awesome, put in a bowl and then bake it for a half an hour in a moderate oven you end up with steaming shit pie.

My pain levels have been going up. I ran out of the super strong anti-inflammatories about a month ago and I keep forgetting to get another script from the GP (she hasn’t asked because Rheum usually prescribes it). I think that’s having a pretty big impact but it isn’t a relief to know that without them I am in as much pain as ever. Why am I taking these toxic drugs that are killing my immune system if I’m still just as bad? Beefy and I talked about it tonight, I’ve decided to tell the docs that I’m stopping. I’m not convinced that the drugs are helping at all, I’m not convinced I have a reliable diagnosis, even though Rheum swears by it. I don’t know what IS wrong with me but there are things that still aren’t covered by my current diagnosis. I am looking into it.

Anyway, enough of my whining, I must save my energy for making meringue brains and for figuring out what to use to get the jelly to set into a convincing pool of blood around the zombie head. I shall keep you abreast of developments.

Burning down the house (actually microwave but house sounds way more dramatic and it’s a song so I’m going with house)

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I use heat packs a lot to manage my pain. They allow me to use less pain medication and, since no bastard will prescribe me anything for muscles spasm (when they have it’s helped a lot), they help a bit to relieve the horrible, muscle spasms that are a big part of my life. This means that some days are just endless rounds of reheating my rice-filled socks in the microwave.

Being so well used, the rice in my heat packs tends to dry out over time. We replace them fairly regularly but inevitably, there are one or two filled with dry, brittle rice grains.

Last night after dinner, Beefy took my heat packs to be done in the microwave. Gecko needed help with something in the toilet (as you do when you’re 3) so he was in there for a few minutes when he noticed a strange noise. He yelled for Poss to check the microwave and at first she thought it was fine because she didn’t actually look (as you do when you are 12). When she had a proper look Beefy says he heard a panicked “Ah, Daddy, the microwaves on fiiiire!!”.

Beefy raced in and was able to blow out the flames (note to me: Buy fire blanket). He dumped the offending heat packs in the sink and doused them with water then turned to survey the soot covered microwave.

You know that metal plate that is on the wall of a microwave? Well, that plate was very soot covered but more worryingly, when he poked it, a hole, about the size of a ten cent piece, collapsed into the side wall. The metal plated had been charred so badly that it just crumbled away. We think there must have been something actually really wrong with the microwave, or the socks just caught on fire because it wasn’t spinning properly. Either way, this was the result:

So, Beefy’s probably dying of deadly microwave radiation exposure or something and also we needed a new microwave. Very bad timing for me as I had delayed my visit to the GP too long and ended up not being able to get an appointment until Monday afternoon (pain med rationing) and also I had my usual close-to-being-in-labour-style pain/bleeding like I’ve been disemboweled monthly torment so I REALLY needed my heat packs. Really, really.

Last night was not the funnest night ever and today we had to venture out to the land of the giant W to find the cheapest non-ugly microwave we could find. The decision was easy as there was only one microwave that was so deep that the front legs would hang over the designated microwave shelf. We, being entirely ourselves, decided there was no other microwave that would suit.

Still, t’would not be our kitchen if it were lacking in dodgy, botchy home finishes. A few swipes of a circular saw to some spare kicker and we had our solution. See those black boards that are supporting the legs? Not too obvious in this photo (thanks Beefy) but in real life they are tres chic.

This may seem like a pretty annoying, money-draining adventure but actually I’m quite pleased. Not just because that microwave was always annoying but because there was a major family property-destruction fuck-up in which I was only a minor player. Totally not my fault, really at all. That almost never happens people. I am still utterly exhausted, though.

So, how was your weekend? Oh, except all of you NNB2011 people, I’m not interested in your weekend, I’m sure it was really boring anyway, *sob*.

Blah and wah and aarrgghh

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I am having the blah. I have PMS that has pretty much turned me into shouty, cryie grumpgrump. That’s my new official name. Also, really shit non-bloggable stuff that makes me teary and grumpy in turns. Or maybe that’s the PMS. Either way, there’s a fair bit of crying and grumpyness. Also shouting. Pretty much just at Beefy and the odd inanimate object or two. So, just to wrap up, so that we’re clear. I’m in a shit mood and I keep crying and I feel sad. And the world sucks.

I’ve just today gotten around to putting the WP app on the iPad I’ve stolen from Beefy (was a gift from his Dad). He’s surprisingly pleased to have me claim it. I have always used it but if I’m going to use it for blogging and things I don’t really want the whole family taking it to play with all the time. Gecko would probably make some interesting blog posts, she might even improve the quality but it’s more the thought of them inadvertantly showing other people my private internet world that makes me squeamish.

Not having to press so hard on the keys to type makes a big difference to my being able to blog when I am not so good. Although, it is not correcting funny spelling or even underlining it in a wobbly red line so that should make for interesting reading as I don’t always hit the key I mean to. I rely on spellcheck, people! Heavily.

As I mentioned in the last post, it looks like that Rheumatoid bastard that rules my life is rearing it’s swollen feverish head anew. I am going to wait a while to call Rheum, I’m not supposed to see her until December. We’d hoped that I would be doing well for at least the next few months but my body, it has other ideas. Fingers and toes are almost constantly stiff and sore now. Just what I wanted.

I put my pelvis out yesterday. You know, the pelvis that the specialist said was totally healthy and not unstable at all. It seems that small changes in hormones just tip my already hyperemobile joints over the edge. My rheum commented that maybe I have endometriosis when I made that observation to her. She doesn’t know how close she came to getting punched in the face. If one more doctor suggests that I might be confusing intense spasmy musculo-skeletal pain that centres around my saco-iliac joints with gynaecological pain, I will stab them. I am intimately familiar with both and there is no mistaking one for the other. Are we clear? Good. I have given myself a day to regroup, I couldn’t face the GP today. Tomorrow I will go to address the fact that:
-The latest reduction in pain meds has left me in too much pain
-My boob is still really fucking sore
-I forgot to tell Rheum and GP that I ran out of NSAIDS and I need them
-We still haven’t gotten to the bottom of the fact that my back/pelvis hurts all the time, which is the original problem that started me seeing doctors in the first place (after it had already been going on for more than 3 years).

Beefy and I have discussed it. The rheum is content to hear stories of me semi-dislocating joints in the course of normal activity and tell me that It’s because my muscles have gotten lax from all my rest. I think she and annoying physio have been chatting in secret about ways to piss me off.
She and at least four other doctors have said things lke “Wow, you’re really hypermobile, aren’t you?” yet she thinks that it shouldn’t be causing me problems apart from faster joint erosion leading to osteoarthritis. Beefy tried to broach the subject with Rheum on last visit but she misunderstood and said “Oh, don’t worry, joint popping isn’t a problem, it’s nothing”. We gave up trying to explain that my joints pop OUT and cause me a lot of pain. GP knows and has encouraged me to discuss it with Rheum but after several aborted attempts (Usually because I don’t want to make a fuss. Go me, being all assertive and shit!) I really want to talk to GP about another way of addressing it. Ignoring it won’t make it go away. It irks me so much to be the problem patient who always has something wrong with them but here we are.

After all of these tests and doctors and medications, I am still in pain all the time. As we’ve reduced the good painkillers it’s become apparent that they’ve been masking a lot. I’m supposed to be but a step or two from not taking them at all. I can’t bring myself to do that. I won’t subject myself to more months of pain with no relief just because that’s what they would like. They’re happy to discuss the fact that the RA meds will not stamp out the disease but merely lessen it’s activity, they’re happy to discuss the fact that my pelvis/back is causing me a lot of pain but nobody’s happy to take charge of prescribing pain relief on an ongoing basis. I am booking in to see the private pain guy, an appointment which took months and months to get but I cancelled because I got the PMU appointment (smart moves, I am full of them). Someone’s going to have to agree to take charge in the mean time.

I read the result’s of a study recently that said that 8/10 RA patients either cope with much more pain than their Rheum thinks they’re in or see another doctor to obtain pain relief. Interactions that I’ve had with other RA sufferers online seem to support this. That’s fucked up.

My poor sister injured her foot a couple of months ago. At first she was told it was seisamoiditis (inflammation of the round – like a kneecap – bone that sits inside the pad where your toes meet your foot). Then she discovered that the GP failed to let on that her big toe seisamoid was actually broken. Now, after all this time, new x-rays show 3 seisamoids where there sould be 2. The broken one appears to be sliced in half. It might be dead. She has an orthopaedic surgeon appointment soon but they are also thinking possible RA because of my stuff.

I am terrified for her.

We were talking the other day and she told me how sorry she is that she hasn’t done more to help me. These new developments have had her googling RA and that, combined with the fact that she’s been forced to rest her foot for the last two months, has suddenly made her realise what I’ve been living through. I cried. I haven’t been upset with her, not a bit, because I don’t go into a lot of detail with family and friends, they mostly don’t know how bad things are. Actually, it’s this blog that cops all of the whinging. It was nice though, to have someone in my day to day life really get it.

There probably isn’t much she could have done, throughout all of my crapulence, to help but knowing that she understands, even a bit. That helps so, so much.

I’ve got the FEVER!!!!!

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You know how it is.

You blog, play on the internet for a little while, then leave your laptop open, sitting down the end of the bed. Beefy closes it when he comes to bed.

The RA fevers, which are new to me (I thought I’d craftily got myself drugged up early in my disease and wouldn’t get them, wishful thinking much?) are bad and you can’t manage everything, getting out and opening the laptop seems so hard, and you wouldn’t be able to concentrate anyway. It’s best not to be too out of it when you’re going for a jaunt around the internet, anything could happen.

You check your phone for emails that need replying to and there are none.

It doesn’t occur to you that the laptop stole them while it was open.

The house is running out of food, you can’t put off the online shopping any longer.

You open your laptop and whoosh, it fills up with emails. Comments that you haven’t replied to, emails that you haven’t responded to.

You feel guilty.

Everybody else seems to manage to blog constantly and be all over twitter and, and, and.

I’m sorry that I’m a bit crap. My body makes demands that I can never seem to meet. I feel like I’m always falling a bit short, sometimes a lot short. I find it so hard to keep up in all aspects of my life. My kids get less, my husband gets less, my friends, my housework, my hobbies. Sometimes I feel like I’ve come to terms with my limits. Other times I am still longing for who I used to be, longing for everything to be easy. still put on the good front for almost everyone. Why do I do that? I think it’s because I’m embarrassed, I’m prideful. I don’t want anyone to see me as less. But it’s true, I am less. Less everything. Even though I know that this is life now, I don’t want to change how I see myself. Letting go of that other self. That self who was more. Who could do more.

Wow, I think I’m feeling a touch melancholy today, moving along.

As promised, a photo of the very green bathroom:

Now, when I bought my sarape, I promised that I would provide a photo to demonstrate the awesomeness that is the blanket. Today, whilst still in my pyjamas, with bed hair, I tried to take a photo of myself with my blanket. I couldn’t get a good one so I asked Poss to help me. She LOVED helping me take photos and we might have gotten a bit carried away with the posing and the giggling. In the end she took A FUCKING LOT. So, I thought I would share with you a selection of the photos we took, including the one where I hurt my back, see if you can spot it. I don’t know why I said that, it’s not hard to spot. Anyway, enjoy!

P.S. I don’t even let photos of me be on the wall, there are three small wedding photos and that’s it. I can’t believe I just did that. Blame the fever.