Life

Terrible skin and asking advice.

by Veronica on August 16, 2010

in Ehlers Danlos Syndrome, Life

My skin is terrible. So terrible that in most photos of me, I utilise the power of the ‘heal’ tool in photoshop.

I think most of it is EDS and not healing very well, or very fast, but my skin = shocking. I get a lot of period related pimples and they take forever to heal, leaving me with giant red spots all over my face.

Sexy, right?

I’ve had some sucess with using an insane amount of vitamin C to help with healing, but as for skin products, I use very few.

So I’m asking your advice, my lovely beautiful internets on what works for you. My skin is combination/oily and at the moment, I use a garnier daily moisture cream and avon clearskin cleanser and warm water.

Obviously that regime is working SO WELL.

However, while the vitamin C isn’t really helping with the pimples and healing, it does seem to be having some effect on the bruises I develop. 80% of the time I don’t look like a beaten wife. I used to joke that someone seeing my legs would think that Nathan was hitting me. Luckily the bruising seems to be limited to my legs/bum/back, with a few on my upper arms. I don’t think I’d cope very well if I was bruising everywhere – lovebites are disgusting looking and even worse if they’ve just appeared for no reason.

So what do you think would work well for my face? My skin is quite sensitive and I’d like something that cleared up blackheads too, as *shudder* they are the scourge of my life.

Dammit, I’m broken enough, the least I could get would be awesome pretty skin! Wouldn’t it be nice if pimples stopped with the end of puberty?

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Not perfect, but getting there.

by Veronica on August 3, 2010

in Animals, Life

Seven died the other day. She followed our neighbour’s car onto the road and was hit by a car coming the other way. A stupid accident, a stupid mistake. Unlike Susie, this one wasn’t preventable, as Seven was an escape artist extraordinaire.

But this post isn’t about Seven. Not today.

Since Susie died, I’ve been spending a lot of time trawling the dogs home website, constantly looking at the dogs needing a home and wishing that Nathan agreed with me. All those sad faces, needing homes, dammit, I’ve got a good home and I want a new dog. I miss Susie a lot actually, and now Seven too, as much as I try not to think about it.

Eventually, I put my foot down and made Nathan take me and the kids to the dogs home – knowing that most of the time, the dogs are adopted before they get put on the website.

Of course, I fell in love with the 6 week old puppies because they’re just! so! cute! but they were all spoken for (fantastic).

We walked around all the kennels, my heart breaking for the dogs who didn’t have owners.

‘Look at that one. Pity we didn’t have more land, he needs a job to do,’ I said to Nathan as a 4 month old Kelpie x Blue heeler ran around his kennel, chasing his tail and bouncing excitedly at the sight of new people.

‘Oh! Look at her ears!’

‘Poor girl, you’re 9 and in the dogs home? Where did your previous owner go?’

And then, we found her.

Amy looked at her, nodded her head and said ‘This is our dog. We will take her home.’

She wiggled in the bottom of her kennel, every inch of her body pressed up against the wire, straining to be patted. She didn’t jump, or bark or whine, she just leaned into the wire and looked at us with giant pleading eyes.

‘She’s beautiful’ said Nathan. I agreed readily. A startling white patch over most of her face left me with the impression that one of her eyes should have been blue, not brown.

‘How old is she?’

I read her card. Six months, or thereabouts.

‘Still young enough to learn lots.’

‘Yep.’

‘How long has she been here for?’

‘Ummmmm, since the 30th June it says.’

‘Ah right, she’s only new then.’

‘Yeah.’

While we talked, we were busy pressing our fingers through the wire, stroking her head and ears. She pressed closer to us.

‘You like her?’

‘Yes.’

We wandered back to the front of the dogs home, looking at the puppies again.

‘Your decision’ says Nat.

‘Okay. We’ll ask about the pups first, because it’s very likely they’ve all got homes.’

5 minutes later, yes, the pups all had homes. So we asked about the lovely natured Border Collie, whom we both adored.

Now, before I say anything more, a 6 week old puppy is always going to be my preference, simply because they’ve not had time to learn any bad habits – it’s just how I think. But the look in the collie’s eyes, I was pretty sure she was our dog.

No. No prospective adopters for her yet, no holds, nothing.

So we started the ball rolling.

Almost 2 weeks later, a yard check (I emailed through photos), a conversation with the lovely girl on the phone and a deposit paid, she came down with a stomach virus and the desexing that was meant to happen didn’t.

So we waited a little longer, for her to get better, for us to get more ready. Of course, Isaac then broke his arm and if things are going to hell, you DEFINITELY need a puppy around the place to take your mind off things.

But, when we brought her home, she was just perfect.

And this time, this dog, she’s going to be a mostly inside dog. I’ve lost enough dogs to this highway – I can do without losing anymore, thankyouverymuch.

Ah Seven, we’ll miss you. We were meant to be bringing you home a friend, not losing you beforehand.

This is the new pup. Amy has named her Maisy, after some backwards and forwardsing, but it seems to suit her. She is a dream with the children at this point, not jumping, or bowling them over. Isaac is still unimpressed every time she swipes him with her tongue, but he’ll cope.

The best bit? She seems so freaking grateful to be here with us and not at the dogs home anymore. Rescue dogs are amazing.

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A little while ago I went to a rheumatologist to discuss my Ehlers Danlos and various pain management drugs.

At first, the lovely doctor was a little baffled as to why I was seeing her, as she was not a doctor who normally sees EDS – apparently in Tasmania, once you’ve gotten a diagnosis, you’re expected to stay at home and deal with it, not seek input from specialists. But maybe that was just the collective impression I’ve had from all the doctors I’ve seen.

We talked a little, as you do and she admitted that she knew very little about EDS, having only seen one, very mild case of it in her history of seeing patients. I wasn’t put off, I’d much prefer a doctor who admits they know very little and listen to me, rather than someone who knows very little, bluffs it out and ignores everything I’ve got to say.

Of course, we all know how bendy I am and I had to stop myself choking with laughter when she asked which joints of mine dislocate. I told her she’d be better of asking which ones don’t dislocate (to my knowledge, my right elbow is fine. So are my ring fingers. And I don’t think I’ve ever dislocated my spine. I’ve also never dislocated a patella, my knees when they dislocate prefer to pop out my fibula. Yay me) and so we worked through how broken I am.

We talked about pain management and she recommended a new drug, something that I’d not tried. It’s called Endep, and while it’s mostly prescribed for depression, it also works ‘off the label’ for insomnia (check) and pain (double check).

She was concerned about the possibility that my pain, while some of it is related to constant and recurrent dislocated, that it could actually be neuropathic. She was also quick to let me know that she didn’t think that it was ‘all in my head’ but instead, that my nerve signals were getting muddled and telling me I had pain when I didn’t.

Which um, hello pain episodes! I knew, from research, that my pain episodes were likely neuropathic in nature, but I couldn’t get my GP to listen to me properly when I tried to bring it up before. In his defence he is highly overworked, knows very little about EDS and so relies on me to research and present him with the best course of action. Fine when it’s ‘please redo my prescriptions’ less fine when it’s ‘I’m having issues with — and I need your help’.

Anyway.

I have pain episodes. They’re triggered by something hurting, something new, that my body isn’t prepared for, which in turn overloads my brain. When I’m having one, it feels like all my muscles are clenched, my skin feels like it’s burning and every nerve ending sets on fire. I can’t walk properly during one, because it hurts too much and if I’m touched suddenly, I have a panic attack because of the pain. It’s almost like an itch in the middle of your back you can’t scratch, your whole body focuses on it and everything else goes a little hazy.

To put it in perspective, a stubbed toe can cause a pain episode. My latest one was caused by my period starting, the period pain tipped my brain over the edge into a world of hurtiness.

The Endep, because they work on nerve pain, they help the pain episodes, something that no other (legal) drug has helped with yet.

So they’re working and working well – I’m managing to sleep again and my pain has calmed down. Inside a brain, the pain and anxiety centres are very close together (or else respond the same way to stimuli, I can’t quite remember), meaning that pain triggers anxiety and anxiety can trigger neuropathic pain

And there I was, falling apart, stuck in the centre of a giant vicious cycle. That I’ve now, hopefully, broken.

Of course, I’ve still got pain from the dislocations and I suspect we’ll see the onset of arthritis in my hands fairly soon, but the debilitating pain, that’s being helped.

I’m also still on a slow release Tramadol and a regime of panadol osteo (for bone pain) and it’s better than it was. I’m still fairly broken, but I’m not as messed up as I was.

I’ve got a referral to the pain management clinic as well, so I’m hoping that that will help a bit with the pain/anxiety cycle – but of course, like all good things it takes 9 months to get in to see them. Le sigh.

I’m in a good place at the moment, mentally (we’ll ignore my physical bits for now, fucked up mess that they are). Of course, there is a ‘clickiness’ in my heart, so I’m booked for an ECG to check my heart out and I’ve got a mild scoliosis that needs to be watched – something that I didn’t have a few years ago, but I’m in a good place.

Something that I definitely wasn’t a few weeks ago.

***

Updated:

A visit with the doctor has seen my Endep changed to Cymbalta, which in the long term will be better for pain and anxiety. That said, it’s currently making me completely sleepless, so I’m not enjoying myself very much. Sigh. It feels like a balancing act, trying to work out what works best with minimal side effects and long term issues.

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A winner!

by Veronica on July 4, 2010

in Life

Remember, a little while ago I offered a copy of Microsoft Office 2010 for one lucky reader?

Well, the numbers have been drawn, (a little late, no judging me)

annnnnd…

Which is the lovely Annabel from Get in the Hot Spot!

Congratulations Annabel, I’ll be emailing you with details and organising your prize!

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Happy Birthday Nathan

by Veronica on July 1, 2010

in Life

Happy Birthday Nathan!

I don’t know what we’d do without you.

(For everyone else, I’ve been exhausted lately, my new meds are working, but leaving me with very few spoons to do things like internet with. My reader is exploding and I’m very sorry, I’ll hopefully be back about soon.)

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