Evelyn

Soap, Spring and Sunshine

by Veronica on August 19, 2014

in Evelyn,Life,Soapmaking

A month on Cymbalta (give or take a few days) (take, mostly) and things are slowly evening out. My pain is back under control, I’m no longer feeling quite so scatty and distractable and if my jaw is dislocating a hundred times overnight, well at least it isn’t aching all day as well.

Spring is sprunging here. My fruit trees are trying desperately to squeeze out some early blossoms and the sight of the swelling buds brings me so much joy. The nights are icy and there is frost on the ground in the morning, but the days are long and sunny and there is a patch of sunlight in my bedroom I can spend hours lying in like a contented cat if I need to.

It makes the bitterness of death a slightly easier pill to swallow. Nathan’s grandmother died last week and he will miss her. She was lovely and we named Evelyn for her and my grandmothers together, which soothes the ache of missing them a little. Their names will live on, even as they don’t.

Yesterday was full of sunshine. Nathan spent the day grumbling about the dirt against the side of the house as he pulled weeds and discovered exactly where the wood boring grubs are causing issues. He excavated an old hole into the foundations of the house and we shoved the cats down there to hunt mice and chase each other.

Evelyn happily followed him around the yard, throwing weeds into the wheelbarrow until she got bored, pulled her gumboots off, sat in a pile of freshly turned dirt and began digging. By the time we were ready to come inside she was covered in mud, but it was okay, because she had successfully completed her quest to fill her boots up to the very top with dirt. I admire her ability to stick to a task as the cats ran over her, the dog nearly sat on her and the dirt she was sitting on got progressively damper.

A long warm bath and she was clean again, with a bonus lot of fingernail cutting thrown in.

Winter hasn’t been cold exactly, but it’s been dull and weird, probably contributing to my dull and weird mood. More vitamin D is in the works, along with an iron supplement, because I always seem to forget I need to supplement with iron when I get too exhausted to eat well.

The soap business launches in a little over three weeks and I am so excited. My shelves are full of soap ready to sell, and my other shelves (and the other shelves, and basically the entire house) is covered in soap still curing, packaging, label tests and various lists of things I need to do.

It’s excellent and exciting and I am so grateful to you, my dearest Internets, for supporting me and making the process of setting up a business so much fun.

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And now you are TWO!

by Veronica on July 28, 2014

in Evelyn

My dandelion headed, willful, gorgeous, cheeky, amazing girl is TWO.

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Eve opening presents 006

We’ve come a long way in the last two years and to hear her sitting next to me right now with textas and paper, demanding I draw her flowers is just fantastic.

She’s still recovering from the RSV and is more fatigued than normal, but she’s getting there.

Happy Birthday Evelyn! We are so glad we have you.

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In summary: No one died.

by Veronica on July 19, 2014

in Evelyn,Headfuck,Soapmaking

Internet, I cannot tell you how nice it is to be home. I’ve spent the last three days in hospital with Evelyn after she caught RSV and gastro together, making her horribly unwell.

Evelyn sick

Three days of IV fluids and a little oxygen and we were allowed to come home yesterday for a trial to see how she does. I am grateful to say she rocked the trial and we are still home and she’s feeling a little better back in her own routine. Not well enough to run around the house, but well enough to have opinions about putting on pants this morning.

We were worried and we’re so glad she’s on the mend now. It will take her a while to gain back the strength and weight she lost, but she’s eating a little and toddlers are excellent at bouncing back. Unlike Nathan and I, who are still getting over the effects of the gastro and RSV Evelyn gifted to us.

On the being home front, there’s nothing like sitting next to a toddler who is too unwell to do anything but sleep, watching her oxygen drop lower and lower to make you appreciate small things like a hot cup of tea and being able to potter around the house without worrying someone is going to cough themselves into unconsciousness.

Not to mention the bliss of sleeping in my own bed last night after the hospital pull out and previously, a mattress on the floor so I could monitor Eve’s breathing.

Things have been quiet here while I tease out what I’m doing. Evelyn update above aside, I’m not a Mummyblogger any more. So I don’t know what I am. Tired, mostly.

The fortnight of serious illness coupling as it did with the school holidays means I am seriously behind on soap work. There is 24kg of soap needing to be stamped and honestly, I’m not sure I’ve caught it in time. It might be too hard to stamp and I’m loathe to ruin any soaps trying. So I may just ignore it and send them out unstamped.

My routine is thrown out, and I’m struggling a bit, stepping back into the role of maker, writer, business owner, mother, nursemaid. Taking a fortnight was the only choice I had, but it’s hard now, playing catch up. That’s the problem with working for yourself – if you’re too sick to work, the work just waits for you. No one else does it for you.

It will be okay. I’ve only got eleventy hundred soap buckets to scrape out and wash, and like, five hundred soaps to label and wrap. When I get around to buying the paper for labels. And designing the labels. And printing them.

Holy mother of god but I need three more of me. And minions. Lots of minions.

 

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So my Money Circle article this week is about Health Insurance and why we don’t have it. I wanted to expand a bit on this for you here. Which may end up less “expanded” and more “whingey” but what’s the use of a blog if you can’t complain about disability now and then?

Go read it and come back, okay?

I’ll wait.

Stop reading here.

You’re really bad at following directions aren’t you?

Here’s another link. Click it.

All up to date? Awesome.

Last week, Amy had an appointment with an Occupational Therapist at St Giles – the public health system’s answer to quirky and disabled children needing therapy. They’re awesome in there and we’re big fans.

Eve’s physiotherapist had referred Amy through after listening to us talk about some of the problems Amy was having at school. I wasn’t sure what to expect to be honest, certainly not answers immediately. After all, who gets answers straight away? That sounds like a normal person thing to happen.

Amy is struggling with writing at school because her hand isn’t strong enough to hold a pencil for more than a few minutes at a time. Her hand fatigues quickly, collapses a bit, and then fatigue travels through the rest of her body until she is barely managing to complete any handwritten work at all.

She’s smart, but memory only works so far when you’re too tired to complete your worksheets and journal writing.

Recommendations have been made for the school to follow through on. Things like a slope desk, weighted pencils and a Department of Education supplied notebook computer. Amy will learn better if she’s typing out her answers and her news writing, rather than spending that time hurting herself trying to write with a pencil.

These things are yet to be implemented, but I’m not sure it would be happening if we had private health insurance. Leaving aside the nightmare that is pre-existing conditions, most health insurers only offer a small amount of OT support a year. On the fund which seemed most likely to be affordable if I find and keep some regular freelance gigs, I was able to access $300 OT a year for two people, capped at $600. Now I might be misreading how therapy is covered, but it seemed to me like a lot of therapies we access aren’t considered very necessary to health insurers.

Sure, if we break a leg, it would be awesome. But for long term degenerative disabilities, which need supportive care, plus extra medical care? It’s not feasible.

Amy is going to start OT at the end of the month, going once a week for a month when we’ll reassess how much help she needs.

Evelyn sees a physiotherapist, a dietician, a paediatrician, a GP, a neurologist, an ophthalmologist and an audiologist. Some of these things are covered and some are not.

Disability is a hard thing. Not only does it impact every part of your life, but often it impacts your ability to earn money. Once your earning ability diminishes, your quality of life does too, because where is the money coming from? Basics are covered, but other things, things that make life easier like stair lifts and hand rails and dietary needs, those are the things you have to decide whether you really need them.

Evelyn is developing a range of allergies and intolerances and we’re basically on a Paleo diet right now, except without nightshades or strawberries, and with rice.

Gluten makes her sick (we’re going to be checking if it’s just wheat, or gluten as a whole, as soon as we can), dairy makes her vomit. Nightshades give her hives, so do strawberries. We’re down to only fresh produce, and expensive ingredients.

I’m not sure about you, but fresh food is awesome. It’s also expensive, doesn’t last as long as pantry staples and takes more preparation than a bowl of two minute noodles. When I have to plan every single meal to make sure Eve is getting enough nutrients from her food, rather than just handing her crackers and cheese at snack time, I start to get exhausted and broke.

There’s only so much apple sauce a toddler will eat before she’s bored and screaming.

Because apples are cheap and artisan coconut flour and almond meal to make toddler friendly paleo blueberry muffins are not.

Disability is a multi-faceted thing. I think people like to imagine disability in terms of wheelchairs. Without a wheelchair, you’re just putting it on. No matter that wheelchairs are probably in our future. When you think of disability and working, no one takes into account things like pain, exhaustion, joint fatigue, muscle spasms, dislocations, blood pressure issues, heart palpitations, fainting, vomiting, nausea, etc etc. You get the idea.

My form of disability means I cannot work in a regular job, even if I was in a wheelchair, because I need to spend so much time in a prone position between bouts of doing things like preparing a paleo lunch no one will eat.

Without a regular job, there isn’t regular income and no way to pay for the health insurance that people assume I should have, because as a disabled woman who gave birth to disabled children, I ought to be ashamed of using the public system, can’t I see what a drain, a strain we are on the system?

Like I said, complex.

We’re lucky, we have options open to us. We’re in the process of opening a soap making business. Our future, financially, looks brighter than it had been.

But other people are not in the same boat, and that’s rough.

Health insurance is complicated. Disability is complicated.

And that’s the real story.

 

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YOU GUYS. The upworthy headlines drive me crazy. So crazy of course I had to use one, because IRONY. Or something.

(This isn’t ironic, it’s just annoying.)

Yesterday was supermarket day and Coles had strawberries on special. When we got home, I shared the strawberries with Evelyn and YOU’LL NEVER BELIEVE WHAT HAPPENED NEXT.

Oh wait, yes you will. Because of course she’s allergic to strawberries suddenly.

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I put her to bed shortly after these photos. 45 minutes later she was awake, screaming, with a sore tummy and a even splotchier face. No breathing problems or swelling though, so thank god for small mercies.

After panadol, cuddles and lots of love, she let me put some soothing cream on the angriest of the red bits.

Strawberry allergy. Grumble grumble grumble.

She had a bad night and today seems like her tummy is still causing a bit of pain, but the redness has eased, leaving behind a big eczema flare up.

On the upside, strawberries are much easier to avoid than peanuts or eggs.

And she’ll probably grow out of it.

And it’s not that big a deal in the scheme of things.

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