Category Archives: EDS

Food, eating and broken tongue ties.

So, my son. He of the not swallowing and the tongue tie and the issues.

He turned around the other day and poked his tongue back out at me. I was stunned, in a good way. I prised open his mouth, which was harder than it sounds, and checked. No tongue tie. The frenulum that I used to be able to see easily, gone.

I don’t know if he bit it, or snapped it somehow, but it’s fixed. Suddenly, instantly, he can swallow properly and poke his tongue out. He is talking heaps more and trying to have conversations with me. The issue now is trying to work out what the hell he is saying before he gets frustrated with me and gives it over to yelling or screeching instead.

It’s insane.

It’s fantastic.

He took 2 steps the other day too. Wobbly ones and after two steps he threw himself at me, content that I would catch him. I did and we giggled. He is still very wobbly and can’t manage any more than 5 seconds standing unsupported.

Now that he is standing alone though, I’m noticing more issues. His left foot turns out, badly. Like, 90 degrees badly and when he steps, it doesn’t straighten.

With my untrained eyes, it looks like the turn is coming from the hip, but I’ll ask the physiotherapist about it next time we see her. I don’t know what impact it will have on his walking, but to be honest, I’m not expecting him to walk any time soon. It’s enough that occasionally he lets go with his hands, and walks holding my hands. Both things that Amy was doing at 11-12months. And I KNOW that you’re not meant to compare, but really, I can’t exactly compare him to ‘normal’ children with their development, can I?

Can we just come back to the fact that he is swallowing? Properly? Thank GOD.

***

In unrelated blogging news, I’ve been updating my food blog again, after months of …. um …. not. I’m enjoying it and maybe you will too.

There are new posts up on the other blog. I mean, one new post. You’ve probably seen it already. [yes, this is me telling you to go read my other blog. now. make me feel better about the lack of readers over there, okay?]

Also, I want to address the sponsored posts issue. Yes, I’m doing sponsored posts here for Nuffnang. Mostly because being a poor penniless writer doesn’t appeal to me and Nuffnang doesn’t pay badly. Funds are tight here, Nathan is my full time carer, so he doesn’t work at the moment. That might change as the children get older, but my body is failing and I need him home. So any money I bring in from writing goes towards the household and things like that.

Sunday, I will be announcing the winners of my advertising competition. Maybe sooner – I’ve made my decisions and some of you have been notified already and some haven’t. Please, bear in mind that if you didn’t get a free ad spot at this time, I will probably be offering spaces again in a month. And I love every single one of you who entered, so thankyou so so much.

So that’s me! How have you been?

Posted in Blogging, EDS.

24 comments

By Veronica – March 11, 2010
Facebook and Ehlers Danlos

There is a copy paste status going around on Facebook that makes me want to gouge my eyes out.

Paraphrasing:

I love my body even though it’s changed through child birth, every mark, every scar, it’s a sign of my children and etc etc etc. Copy paste this if you’ve had children etc etc etc.

Lovely sentiment and I can totally understand why women are copy pasting it to their status. Affirmation that even though childbirth has changed your body, you are an amazing woman for it.

And you ARE. My GOD you are. You’re amazing, you created another human being. That right there is amazing and you should be proud. If I see the copy/paste thingy on your status, I promise, I won’t even be tempted to throw stones at you.

But reading that status makes me bitter.

Maybe because after 2 children, I’m not all that changed? I don’t think childbearing has taken it’s toll on my body all that much – except for how much bendier I got.

And yet, I am broken and battered still.

If my war wounds were a result of my children, I would bear them proudly, I would stand up and I would shout from the roof tops how proud I was of my body.

Yet, my elastic skin that tears at the drop of a hat, that wasn’t childbirth. The stretchmarks on my stomach, while exacerbated by pregnancy, weren’t caused by pregnancy.

The bruising on my legs, the livedo reticularis that means I can’t wear skirts, my battered broken bits -

Not a one of them I attribute to pregnancy and child birth.

Every. Single. One. of the things I dislike about my body is caused by Ehlers Danlos Syndrome and that makes me bitter.

I can forgive the visual changes – really, I don’t mind how my body looks, even though it’s different. It would have been different anyway, no matter what.

I dislike my body, often, even though I don’t have body image issues (in fact – 2 children later, I am quite proud of how I look).

But.

I hate how I can’t bounce out of bed without checking that all of my joints are in place.

I hate that I can’t walk across the room without tripping over, or walking into a wall, or having to think about every step and judge where everything is by sight, because my feet are stupid and don’t work very well.

I dislike that I have to think consciously about how I move.

I hate that pouring the milk for my cup of tea this morning dislocated my wrist.

I hate the fact that my ribs won’t stay attached to my spine like they should.

I don’t like the way my skin tears, just because it feels like it and then takes weeks to heal. I dislike the bruising that makes me look like a victim of domestic violence (although, am grateful, my face rarely bruises unless I actually walk into a door).

I hate that I am 21 and move like I am so much older – feel like I am so much older. I hate the pain and the exhaustion. My word the pain. My joints slide around like butter and while my smaller joints don’t leave me screaming, it doesn’t mean they don’t hurt. We won’t even talk about how my teeth hurt from the clenching.

I am bitter about how the EDS has changed my body and I dislike that I can’t love myself in it’s entirety, when really, I’d just like a trade in. It can look exactly the same, just someone replace my fucked up genetics and collagen PLEASE.

Bleh.

I’m just feeling crappy and wishing my only issues were visual ones caused by childbirth.

[Again I state that if you copy pasted that status to your Facebook, I am not having a go at you. You are amazing, you created a human being and you should be proud of every single mark it caused. I am just bitter that I am broken and hurting.]

Posted in EDS, Life.

27 comments

By Veronica – February 22, 2010
Have Your Say: Food Issues

Okay, so here is the deal. I want to start doing a ‘thing’ where I’ll talk about something and you can all chime in with as much advice as you like. Normally mothers get annoyed about unsolicited advice, but this time, I’m asking for help.

Also, I will be about in the comments, so if you want to ask something and have people chime in, even if it’s just to say ‘my kid did that too and grew out of it’ then please, do so. We’ve got a community built here, we may as well utilise it.

****

Now, on to my issue:

Isaac, he doesn’t swallow food. I feed him and he chews the food, but doesn’t swallow, just spits it out again once it’s chewed.

If I give him pureed or mashed food, he might swallow a mouthful maybe, before he realises that I’ve deposited it in his mouth, but mostly, he’ll spit it into his hand and try to feed it to me. Failing that, he’ll just drop it. He’s not a fan of spoon food.

If I feed him finger food, which is his preference, he chews it and then spits it out without swallowing. I can give him half an apple and come back and the apple will be gone, but really, the apple is sitting in a giant circle of chewed pieces around him.

Peas, well, he’ll eat a few peas, before chewing and spitting the rest. The same for most of his other vegetables. Actually, considering I don’t count the peas, he is probably just chewing and spitting all of them. I haven’t seen any come out the other end.

He will eat soft fruit: cantaloupe, watermelon, pears, nectarines. He won’t eat the skin of nectarines or pears and once he gets near the skin he starts spitting. If I peel them first, he still mostly spits the food out.

He will drink milk or water from a bottle or a sippy cup. He is down to 1-2 breastfeeds a day and as of right now, I haven’t breastfed him for 15 hours and I’m not likely to feed him again for another 12 or so hours.

He doesn’t appear to be losing weight, but I don’t have any scales here to check if he is gaining weight either.

He is drinking a full bottle at bedtime and naptime, but I know he is hungry when I give him solid food to eat, so it’s not a hunger issue that I can see.

Oh and he is just over 12 months old.

My questions:

Does anyone else’s child do this?

Does anyone have any good ideas that I can try, to get him to start swallowing the food?

And, to my readers with experience in Ehlers Danlos Syndrome – do you think this could be EDS related? We don’t have another specialist Paeds appointment for another five months, but if he continues to not swallow, I’m prepared to push for an earlier appointment.

Finally: Does anyone else have any questions they want answers to about kids and food? If so, leave them in the comments section. Commenters, read the comments, someone might be dealing with your exact same issue. This might work really well, or it might flop. Frankly, if it helps me get Isaac actually swallowing solid food, then I don’t care.

Kids! Sheesh, but they’re stressful.

Posted in EDS.

35 comments

By Veronica – February 3, 2010
Additions

I did tell you on twitter that this wasn’t all that exciting, just exciting for me.

You know what you need to do when life is stressful? You need to add more things to the family, so you don’t have any time to worry about anxiety or panic attacks.

So would you please all welcome Susie, the newest addition to our family.

Please, ignore the fact that my feet are purple in that second photo. I’m a bit EDS-y lately.

Susie’s Mum was a Springer Spaniel x Border Collie and her dad was a purebred Springer Spaniel. This is the closest to a purebred dog I’ve ever owned in my LIFE! Normally I go in for mongrels (like Seven, she’s a terrier x daschund something mix), but Susie needed a home when I needed a puppy, so here she is.

I suspect we’ll have a bunch of OMG puppy stories coming, but for now, she has fit in really well. Seven is following her around, doing nothing but wagging her tail and trying to lick her.

The cats however, they’re not too keen. Both of them still look a little like I plugged them into an electrical outlet. They’re going to be sulky for weeks and I fully expect a display of decapitated birds to be awaiting me when I feed them tomorrow.

Hehe.

Posted in Animals, EDS.

34 comments

By Veronica – January 27, 2010
Happy Birthday Isaac!

Dear Isaac,

It’s been a huge year little boy. You spent your first few weeks in a sling, coming with me to doctors appointments. Your great-grandmother had cancer and we were part of her support team. She was in hospital when you were five months old. We sat there, waiting to speak to the doctor when you began to scream. And scream and scream. You got to spend a night in hospital that night. We still don’t know why you screamed, although I have suspicions.

Nan died a few days after your hospital admission. You were in the room with us when it happened, fast asleep in your pram. I’m grateful for that, that you were sleeping.

You had a seizure when you were 6 months old. We spent yet another day in Emergency with you, only to be sent home. Luckily you haven’t had another one. The six months since then have been a whirlwind of doctors appointments, geneticists, tests and more tests. You’ve been diagnosed with Ehlers Danlos Syndrome and been poked and prodded and shown to students.

You’re my happy boy, always smiling. You’re a bit grumpy this morning, but that is what you get when you spend most of the night awake. You’re still smiling, you just want to be doing it from the safety of my arms.

You still don’t sleep through the night, or sleep much at all actually. I’m going to blame genetics for that, your sister didn’t sleep either and neither did I. Or your grandfather for that matter. It could be the Ehlers Danlos; actually it’s highly likely it is, but we’ll never know as you can’t tell me.

You crawl so fast, especially when you think you’re missing out on something fun, or food. You like nothing better than launching yourself at your sister, only to have her scream ‘Isaac is going to GET ME!’. You giggle and I have to rescue her, as you try to pull her hair, or squash her flat. She’s not very rough and tumble and yet, you are.You don’t walk yet, although we’ve had moments when you’ve forgotten to hold onto anything and stood by yourself for a few moments. I’m not worried about the lack of walking, not at all. With your bendy bits, walking is too hard for you right now. You will do it when your legs and body are ready and that is fine.

Isaac, we’ve got an interesting road ahead of us as you get older. I’m not looking forward to seeing how the EDS manifests in you and your sister. I spend a lot of time hoping that you’ll only ever have a mild hypermobility, but then, I’ve seen your skin tear and I may be kidding myself.

When it comes to food you are SO there. Any and all food, you don’t care, so long as you can feed it to yourself. You’re gluten free like your sister, as gluten causes you terrible eczema. You’re off to have (genetic) blood tests for coeliacs tomorrow and I suspect that is going to be great fun, pinning you down for a needle.

Your favourite things are wheels and buttons, although I suspect boobs come in very close. We’re slowly weaning, cutting out feeds left right and centre. I wouldn’t be so adamant that we needed to wean if you didn’t keep biting me. Biting is not pleasant. Laughing when I tell you no, even less so.

You’re getting so big and I’m not entirely sure where the time has gone. It passed in a haze of appointments and grief and busyness. It’s been a hard year this year and it’s still hard. You’re always ready with a snuggle and a hug though and for that I am grateful.

Happy Birthday baby boy. You’re my handsome boy, my beautiful happy child. I love you more than life itself and I would do anything for you, even when you do bite my nipple and stay awake all night.

Posted in EDS.

32 comments

By Veronica – January 18, 2010
Different

A phonecall this afternoon:

Hi, I’m calling about your appointment on the 19th?

Yes?

It’s been cancelled. He needs to see a Paediatric Opthamologist, not the regular one.

I think: You knew how old he was when this appointment was booked. You knew he was a baby, why all of a sudden did you realise the need for a Paeds Specialist?

I say: Oh, okay. That’s fine.

It doesn’t matter, we still have to go into the hospital that day anyway, both children are having blood tests to test for the gene that causes Coeliacs. A minor annoyance, compared to the Ehlers Danlos Syndrome, but one they want to follow up with.

A letter in the mail:

When I first saw Isaac, he was sitting at the 10th percentile for gross motor development.

That number, 10th percentile kicks me in the guts. I knew he was delayed, but 10th percentile?

Since then, he is crawling and pulling to standing. He is now at the 30th percentile for gross motor skills.

30th, I think, that’s better, right? It could be worse.

Then I kick myself for thinking that it could be worse, because for some people, it is worse. Some children are off the charts, never to fall back on them again. Some children are at the 1st, 5th, 10th percentile still.

I was warned that both children would be slow with their gross motor skills. I know that Amy was, I watched Isaac lag behind his peers also. It didn’t bother me, knowing that walking would be late, that things were going to be a little harder for them.

Seeing it on paper however, 10th percentile, 30th percentile, even as I tell myself that the numbers mean nothing, that hurts. Because on paper, all they are is a number. No one sees how well Amy talks, or how Isaac is clever and works out how to do things differently, that he is determined and that she is amazing. They’re just a number somewhere, a statistic.

Traversing the realm of doctors and genetic testing and blood tests and physio is harder than it sounds. It’s a stretch of my already limited energy, but it’s something that needs doing. They need the physiotherapy and the follow-up care and the specialists.

And I’m grateful, I truly am.

I’m grateful for a diagnosis, I’m grateful for the Australian Medical System, that means this, all of this, it costs me nothing. I’m not likely to go bankrupt providing the children the care they need.

I’m grateful for the quality of care we are receiving, even when not enough is taught about EDS in med school.

But sometimes, I wish that the children didn’t have to be just a statistic. Even if that statistic is, in my opinion, deeply flawed.

Posted in EDS.

23 comments

By Veronica – January 15, 2010
A lack and an excess.

If you’re here for the post with the controversy, you can find it here. Otherwise, move along.

***

I ran out of Tramadol last night. I wasn’t prepared for how panicky that fact would make me. Before you start worrying that I’m addicted, no. I’m not. I’ve not needed to take a Tramadol for nearly a month now and that made me happy. The 20 I was given on prescription have lasted over 4 months. However, a badly dislocated collar bone that wouldn’t reduce, that then pulled out a few ribs and my shoulder left me curled up in a little ball and wishing that the drugs would take effect faster.

Eventually of course they did and I was able to move. Today everything is back in place, leaving me with a mere lingering stiffness through my left shoulder.

It wasn’t the first time and god knows it won’t be the last time. That is what worries me.

I’m lucky, the painkillers I’ve been prescribed haven’t had any side effects for me. No stoned feeling (I’m on a ship! A ship I say, oh fuck, seasick) like panadeine fortes or complete lack of anything helpful like with over-the-counter medication. They just take the pain away, leaving me able to function.

So to run out of them, knowing that it will be at least a month before I can see my EDSy doctor, it leaves me a little stressed. The same way running out of baby wipes, asthma medication or anti-nausea tablets does. I know that I’ll be okay in the event of a bad dislocation, hell, I’ll just cry a lot until it reduces, but that doesn’t help the panicky ‘oh fuck’ feeling that I’ve got.

See, the dislocations, they aren’t rare. If I’ve not had a bad one for a week, I know one is coming, which then triggers the anxiety over it, which then triggers the panic attacks and then it’s a vicious cycle.

Not fun.

My period is due. Of course, I will now most likely be telling you that my period is due for another 2 weeks, seeing as how my body can never work out whether it wants to bleed every 29 days or every 42. Stupid fucking thing. I can tell you that I ovulated (how do you know? I can hear you screaming – well I went from okay-ish to nauseous and floppy-as-fuck in a day, always a clear sign that my progesterone is on the rise) and that my body is gearing up to drown me, but I couldn’t tell you exactly when that’s going to happen. My request would be sooner rather than later please.

Of course, my period being due means that I am going to bend, flex and dislocate all over the place until I bleed enough to drown a small country, curl up and die from cramps and then come right again, only to start the whole process again.

[As a side note: Yes, I am going to see my GP to discuss endometriosis and other assorted fun gynecological disorders. The pain and screaming of last cycle convinced me of that. She will also prescribe more tramadol, more anti-nausea tablets and other stuff. Luckily I can just get baby wipes from the supermarket without a prescription, so I don't need to panic about those for too long. Thank GOD.]

The floppiness always leaves me exhausted. It takes twice as much effort to walk and move, to pick the children up and change nappies. When I feel like this I spend a lot of time just laying on the floor with them, playing. Really it’s resting, but they think we’re playing and it’s easy, so we’re going to go with playing.

So bleh. I’m sore and I’m exhausted. I’ve got a lack of pain meds and an excess of insomnia. Yay me.

Heh.

Posted in EDS.

17 comments

By Veronica – January 9, 2010
I’ve been a lazy blogger.

Remember, months and months ago, I used to post every day? Do you remember that? I bet some of you are breathing a sigh of relief that I don’t do that anymore. I gave it up in favour of quality over quantity.

However, it seems when I stop forcing myself to write every day, I look back at the end of the month and wonder how I managed to get so few posts together.

It’s harder now, I’m splitting my time between three different blogs (this one, Veronica Foale and Two Mares, in case you’ve been busy like me lately) and I’m running shorter on time. I’ve also found another thirty or so new blogs that I like reading and added them to my reader.

Anyway.

Today I logged into my reader, after sort of glancing at it for the last few days and gulped. Lots of new posts in there. Lots of people I want to keep up with. I’m not sure if I actually have the time to click through to everyone though.

So here is your chance. If you’ve written something in the last fortnight or so and you think I haven’t seen it (you’re probably right), leave me a comment here with your link and I’ll click over and check it out. Promise.

***

We’re in the countdown to Christmas here.

Tinsel hangs garlanded around the edges of the house. Pretty beads drape themselves from spare nails, hung willy nilly everywhere, threatening to decapitate me in the middle of the night.

Isaac spends a lot of time looking warily at the tinsel, wondering if it is going to eat him while he sleeps.

We don’t have a tree up though. We’ve been busy and lazy and haven’t gotten around to it.

Do you think I could borrow one of Kelley’s? I hear she has hundreds.

***

Geneticist appointment:

Question:

Do you think the children have Ehlers Danlos?

Answer:

Isaac: definitely, very hypermobile, bruises easily, happy to diagnose because his skin tears.

Amy: shows signs, very hypermobile, very bruised, very stretchy skin, however no dislocations yet, or skin tears that I can remember. Probably. Bring her back in two years for another clinical examination.

Until then, he is writing me letters of diagnosis for Isaac and a letter to be given to Amy’s school when she starts (in 13 or so months) to say that she has clinical signs and no, her mother doesn’t beat her, please ignore the bruises she is sporting.

I call that a good appointment, considering in children, most doctors refuse to diagnose until they’re thirteen.

***

Okay, confession time.

I don’t have time to respond to every one’s comments via email anymore.

So please, if I suddenly stop emailing you after you’ve commented, don’t stress that you’ve upset me! You haven’t, I’m just having to cut back on time expenditures. If you ask me a direct question, I will probably still answer you, otherwise check back on the blog because I will answer in comments.

I hate those blogs, you know the ones, where the author never responds, never visits you back and doesn’t comment in their own comments. I don’t want to be a blogger like that. If I’m not emailing responses, likely you’ll see me in the comment section alongside you.

Of course, if you email me outright I will respond, every single time. It’s only polite.

***

So um, that’s me.

Of course, half the reason I’ve been absent is due to a trilogy of books that sucked me in. If you like fantasy novels, I highly recommend Cecilia Dart-Thornton’s The Bitterbynde Trilogy. It is very very good. Curl up on the couch and read for 3 days straight type good.

Now I’ve got to hunt down some of her other work to immerse myself in.

Yay.

Oh! Also! Kristen, over at Wanderlust, she is collecting flags on a little widget thingy. She is a little manic about it (in a good way), so if you live somewhere ‘out of the normal’ click over to her and let the widget find your flag. Or tell your friends in different countries to do it.

Posted in EDS, Life.

25 comments

By Veronica – December 18, 2009
Talking about my period.

AKA Too much information, so uh, walk away now if you’re one of my male readers.

****

Today is day #5 of my period and I’ve bled through 3 pairs of underwear already today. Despite using tampons sized the equivalent of a small nation.

Last night I bled through another 3 pairs of underwear and 2 pairs of pajama bottoms. I was still awake every hour to go to the toilet. Yesterday I bled through a tampon, a full sized maternity pad AND 3 panty liners I’d put on underneath the maternity pad just in case. That was within an hour.

I’d just like to say a giant fuck you to my uterus. Not only is it trying to take over my body with the stabby pain, but it wants to leave it’s mark on everything. At this point I’m scared to cough, just in case I drown.

I’m thinking I need to rename it the Pit of Despair.

Apparently, when you’ve not had a period for oh… 9 months or something, when it happens, it’s like the flood gates open and away goes everything you thought you knew about your body. Hell, this bleeding is heavier than the bleeding I had after pushing a decently sized baby out of my vagina. Only without the ‘grazing’ (I refuse to acknowledge that it’s grazing. Cheese gratering was what it felt like).

We won’t even talk about what happens when I feed Isaac and my uterus uses it as an excuse to clamp down and leave me curled up in a tiny little puddle of pain.

Stupid uterus.

We’re also not talking about my EDS while I’m bleeding. Needless to say I feel sort of like a rag doll. A shaken rag doll.

On the upside, I now have an excuse to buy new underwear. I’ve thrown out nearly a dozen pairs so far.

Heh.

Posted in EDS.

30 comments

By Veronica – November 4, 2009
The post in which I get a little anxious and maybe go a little insane. It’s fun being me.

We had a Paediatric appointment today, for the children. We left with a barrage of referrals for various specialists.

In no particular order,

- A referral for both children to see a Geneticist and be officially diagnosed with Ehlers Danlos Syndrome.

-A referral for an Opthamologist to have their eyes tested, as EDS can cause eye issues.

-A referral for them to see a Paediatric Physiotherapist so that we can help prevent problems before they occur, as well as making sure Isaac is developing at a normal rate.

- A referral for Isaac to have allergy testing to try and hunt down the cause of his weeping bleeding eczema, that incidentally cleared up when we stopped eating all gluten. So we’re suspecting gluten is the cause, but testing to pin that down.

-A referral for Amy to have an ECG to establish a Mitral Valve baseline.

And finally, last but by no means least,

- A referral for Amy to have testing done for Coeliacs Disease.

It’s that last one that has me wandering around muttering ohgodohgodohgod. Because to test for Coeliacs Disease, she needs to be eating gluten for 3 weeks before the blood test is done.

The blood test is scheduled in 3 weeks. She had her first piece of bread today.

I’m fucking terrified. Do you have any idea how bad it is here when Amy is eating gluten? She has meltdowns and tantrums and ohmyfuckinggod.

Three weeks.

I can’t shake the feeling that three days into this, they’ll be admitting me to a nice quiet padded room somewhere.

Saying I’m terrified is an understatement.

She’s not a nice kid when she’s eating gluten.

Scratch that, she’s a demon hell child when she’s eating gluten. Her eyes glow red and her head spins and she screeches with a voice that could make small animals die.

This is not going to be a highlight of my life.

On the upside, bread! And dip! And like, bread! And stuff.

Posted in EDS, Food-Issues, Headfuck.

42 comments

By Veronica – September 30, 2009
Feeling Supported

Even thought my GP had doubts about it helping, I went and saw a new physiotherapist the other day. My other physio, if you remember, set me adrift, slightly overwhelmed with how extensive my EDS is. She was nice about it, but it was a letting go and I was left floating along, not really sure where to turn.

The new physio, she’s had training in dealing with hypermobility. She knows what Ehlers Danlos is and while I don’t think she’s treated a case before, she knows how to.

My point is, she’s experienced.

Which incidentally, is exactly what I needed.

She pointed out that my proprioception is pretty awful [apparently I've got feet and if I don't think about them, they bend really strangely without me noticing] and that I’ve learnt how to cheat in order to stand up without falling over [trick: constantly focus my eyes on only one thing].The proprioception thing explains why I can’t sleep in the dark and why trying to walk in the dark is like trying to walk across a pitching ship deck.

She had me stand on one foot and close my eyes. At which point I promptly fell over. It wasn’t a big deal, I was standing supported by bars at the time, so it was more of a wobble, eyes springing open and both feet on the ground than an actual fall.

I walk … strangely. Like a ballet dancer, all toes and along the outside of my feet. Funnily enough, I’d never noticed. See above re: proprioception.

I’ve been referred off to a podatrist in order to get orthotics fitted. She seems to think that straightening up my feet should help with my hip and knee problems. I agree. Which um, why did no one else think to mention that maybe my hip problems are caused by my feet?

I’ve been given two minor exercises to practise as often as I can. And before you start thinking that 2 isn’t much, by the time I’ve stood on each foot for 20 seconds and looked around [to try and help my proprioception, the looking is to stop me cheating], I’m exhausted. I have to sit down and recup.

Which you know, mostly sucks. But in the long run it will help, so I’m standing on one foot and looking around lots. I sort of look like a carnival clown.

I mentioned the children and she thought that physio for them was going to be the best thing I could do. She has a hypermobile son, so she understood where I was coming from when I spoke about how worried I am about Isaac [coming up in a later blog post: listen to me worry about my son. lots].

I left the appointment feeling supported. Like she knew exactly what she was doing and that everything she was doing was going to be in my best interests.

She understood me and where I was coming from.

It’s been a long time since a medical professional gave me that.

Posted in EDS.

28 comments

By Veronica – September 23, 2009
Useless Books

There is a bookshelf in my house. It reaches to the roof, tall and thin. It sits in a corner of the dining room, slightly wobbly but bolted to the wall to stop it falling over.

My father made this bookshelf, a few years ago, for Nan. He made it to cover a useless doorway, boarded over on the outside but visible and ugly on the inside. Shortly after it was installed it was filled with books, top to bottom. I used to stand and peruse the books, picking them up, hefting their weight in my hands, stroking their binding and then curling up with one to read.

Then Nan died.

And this bookshelf; the bookshelf my father made, got moved into my dining room along with all it’s books. The bottom four shelves still contain her books. Books that I used to read of a weekend, books she loaned me, books she was reading in the hospital before she died.

I can’t touch them. I can’t bring myself to stroke their spines anymore, let alone pick one up read it. There’s too much there, too many memories.

I look at the bookshelves and I have to walk away and remind myself to breathe. My stress levels rise and I start to shake. I have to walk away, leaving the books untouched and the stories unread.

I know it will get easier.

But.

Until then, it just sits there.

In the corner.

Wobbling.

***

I’m starting to get a little bitter. My anger is rising to the surface. Things haven’t been made easy for Mum and I in the last three months and there is still so much work left. The jobs stretch out on front of us, marking time until the house is sold. It’s never ending and never easy.

It’s been …. stressful. To say the least.

I’m a little bitter.

***

My shoulder clicks back into position before promptly falling out of it’s socket again. Electric signals sent down my fingers with alarming regularity reminds me that it doesn’t work properly, not anymore.

For that matter, neither do I.

***

Lileya from In The Fringes wrote:

There is a fine line between trying to look on the bright side and putting on a happy act.

and that is so true. That line, resonates within me.

Too often I put on a happy act.

I’m not okay. I’m sick and tired and my joints hurt and nothing stays put anymore. I’m grieving still. A lot.

And I’m sick and fucking tired of having my grief mean nothing because she was ‘only’ my grandmother. I’m sick of having my pain discounted because you can’t understand it.

I miss her everyday.

My joints dislocate everyday.

Every. Single. Day.

So fuck you Anyonetoblog. No really, fuck you. You can’t be bothered to see my side of it? I can’t be bothered to be nice anymore.

Posted in Cancer, EDS, Grief, Headfuck.

27 comments

By Veronica – September 21, 2009
Isaac and sleep issues.

Bendy Girl said something on my last post about Isaac and bedtime that made a lot of sense.

Bendy Girl says:

Poor proprioception might be something to do with why he still needs to be swaddled. Even now I can’t sleep without heavy enough bed covers to feel the pressure on me, I can’t feel the lighter covers & it makes me feel just ‘wrong’ can’t explain it any better!
BG xx

Which (again) was like a light going off in my head. I can’t sleep without heavy covers either. It makes summer less than fun, but it’s not that bad as I’m cold most of the time anyway.

I thought about it and I agree. Isaac does had terrible proprioception. He has no idea where he is in relation to himself, which is fairly normal is a baby. They do grow out of it, but I’m assuming because of the Ehlers Danlos that it will take Isaac a little longer than other babies. He definitely has more issues than Amy did at the same age, but that’s another post all together. It’s also why the kids are being seen by the Paediatricians at the hospital, rather than their medical care being solely overseen by a GP.

Keeping this in mind, last night I wrapped Isaac in one of our largest blankets that he loves. Sure it’s pink, but I’m pretty sure he doesn’t care. One he was wrapped (and sleeping and moved to his cot) I covered him over with a heavy blanket folded in 4 like Mrs C. suggested.

And then?

He slept through the night.

From 7.45pm to 5am he slept without a peep. At 5am when he woke up I fed him and he went back to sleep (easily!) until 7.15 when Amy screamed for me to wake up and woke him as well.

I was a little grumpy with her.

Fingers crossed that it wasn’t a fluke and that doing the same thing again tonight works.

Cos uhm, yay.

Posted in EDS.

27 comments

By Veronica – September 18, 2009
Let’s talk about sleep. Or the lack thereof.

Isaac is sleepless. He’s more sleepless than Amy was and seeing as how I named this blog ‘Sleepless Nights’ when she was 11 months old, that’s really saying something.

He finishes cluster feeding at around 11pm, five hours after I’ve put him down for the first time. His cluster feeds are generally 5 minutes long, every 30 minutes or so. It would be lovely to have an early night, but I’m not kidding myself that it’s going to happen.

At 11pm, I finally get to drag myself off to bed, content in the fact that Isaac is sleeping deeply. Only to have him start the night time feeds.

Every hour, he wakes crying. On a good night, he’ll feed for twenty minutes and then sleep for forty minutes before waking again. On a bad night, like the last few we’ve had, he’ll feed for 20 minutes, goo and laugh at me for 20 minutes, feed for another 20 minutes before sleeping for, you guessed it, twenty minutes.

Add, rinse, repeat.

Over and over again.

Some nights he’ll stay awake for 1-2 hours. Talking, gooing, feeding, crying. Everything except sleeping.

It’s … wearing to say the least.

Our days start at 5am. By the time I get Isaac back down for a nap at 7.30-8am, Amy is awake for the day, needing breakfast and playtime and snuggles and ohmygod.

I’m a little exhausted.

***

The doctor prescribed me some new anti-inflammatories recently. Which is great! My tense and sore muscles thank her.

Only, there is one problem.

Once my muscles are coaxed into relaxing by good drugs, I’m left rather floppy.

No, scratch that.

I’m left with fuck all stability at all.

Apparently all my tensed and painful muscles are actually keeping all my joints together. Whodathunkit.

Anyone else had any experience with anti-inflammatories causing floppiness issues?

By 8am this morning, I’d relocated a good half a dozen joints god knows how many times. After the fourth wrist dislocation, I put a brace on. By lunch time, I’d removed the brace because I was only dislocating inside it. My hips popped in and out as I walked and I’m still not convinced that my elbow and ribs are all back in.

It was a bad day.

The actual dislocations are getting less painful, while the overall pain is getting worse. Trade-off I suppose. It’s rather disconcerting to feel your bones sliding against each other though. Especially when they won’t stay put.

***

6am this morning found me curled up on the couch under a blanket while Isaac played on the floor next to me. I’d been trying to nap again, but he kept squawking at me and needing things. He’s finally worked out how to go forwards, as opposed to sideways or backwards, so he kept getting stuck and needing rescuing.

I climbed off the couch and stood to put wood in the fire. A cat curled around my ankles, trying to make me break my neck. I shoved the wood in, shut the door and leant down to catch the cat. For once, it was easy. She was hungry and didn’t dart away.

I walked past the couch, picking up my heatpack as I went. I opened the gate into the kitchen and walked towards the microwave.

It was only the frantic scrabbling of the cat as I went to open the microwave door that had me realise that it wasn’t the heatpack that I was about to put into the microwave.

It was the cat.

Poor cat.

God knows I wouldn’t have enjoyed having to run outside to rescue my heatpack from the icy ground after I threw it out of the kitchen window.

Thank god I stopped in time.

My feet would have been frozen.

I shook myself to wake up, and ended up with things where they were meant to go. The cat out the window and the heatpack in the microwave.

We won’t talk about how many attempts I had at making a cup of tea though. That’s just embarrassing.

Cough.

***

Hi, my name is Veronica and today, I almost microwaved the cat.

How are you today?

***

Edited to add:

I forgot to mention. I was included in this shiny little list. I’m thrilled. 100 Most Bookmark Worthy Websites For Dr. Mums.

Posted in Animals, EDS.

32 comments

By Veronica – September 11, 2009
Warmth

As the baby falls asleep I run myself a bath. The sound of the pump thrums against the faint gurgles he makes in his pram. I wonder if I’m setting him up for more sleep issues, letting him fall asleep where he will, then content myself with the thought at least he is falling asleep for me. even if it isn’t in his cot.

The bath finishes as Isaac closes his eyes. I hold my breath and quickly transfer him to his cot, swaddled and snuggled. He opens sleepy eyes to look at me and inside I panic. On the outside, I lift his blanket to his cheek and he snuggles down, content that he is safe. His eyes shut again and I turn and walk away.

Through the lounge room I walk, shedding clothes and layers of myself. The children are asleep, the curtains are shut. No one here to see except for me and Nathan. I think he watches me walk away, but I don’t turn around. I’m intent on my bath.

I flick my hair into a bun and turn the heater on. A quick check tells me that the water is the correct temperature.

It’s been a busy weekend I think as I slide under the warm water. Amy turned three, I cried until I couldn’t breathe and I had a good time. All rolled up in two days.

I cock my head to the side, listening for the sound of my children. Nothing. As it should be. I start to relax, even though I never stop listening.

It’s been a long time since I had a bath. I have to gauge pain against the possibility of my body temperature rising causing nausea and the nausea generally wins hands down. This time I have enough anti-nausea tablets to see me through a temperature rise and the pain is enough that I need to soak.

I open my book and start to read. The last time I read a book in the bath was when I was living with Nan. Memories assault me before I shut them out and absorb myself in my book.

Slowly the bath water cools.

As my feet start to get cold, I put my book down. I look around for the face washer I am certain I grabbed, only to find it sitting a few metres away. I grabbed it, I just didn’t leave it within reach. Stupid brain fog. In one swift movement I stand and water streams away. Goosebumps rise as I hurry to grab the face washer and my razor. With a breath of relief I sink myself back under the water, only to discover I’m still cold. I hesitate over running more hot water and then bring myself back to the present, where it’s my water and I’m the adult. I don’t need to ask permission as I turn on the tap.

It’s a struggle, my hands are not as strong as they used to be. I have to use two hands, despite me being the person to tighten them last. If Nathan turns them off I’ve no hope of getting them on again alone.

Warm again, I wash my face and then pick up my razor. I start at the bottom of my legs, shaving all the way up. I count bruises as I go. By the time I get to twenty, I give up. How many there are today doesn’t matter. New ones will just appear to replace the old.

My mind wanders as I finish behind one knee and I cut myself. I can never shave my legs without cutting myself these days. I sink my leg back under the water, not caring anymore about bits I might have missed. This bath is meant to be about relaxation, not counting my flaws.

I contemplate laying in the bath a little longer, but I can’t do it. Not now that I’ve shaved my legs. I stand and grab my towel. I walk out to the fireplace, ignoring the [tiny] mirror as I go. I’m relaxed. No need to stress myself out again with bad skin and bags under my eyes.

It’s warm in front of the fire as I dry myself and get dressed.

I must do this more often.

But knowing me, I won’t. Baths are a treat. A side effect of the huge amounts of rain we’ve been having, I can afford to waste the water to soak myself.

I give myself a shake to make sure everything is where it should be. My ankles have been slipping lately and they need a little wiggle to keep them in place. I stand in front of the fire for a few more moments before kissing Nathan and heading to bed with my book.

10 minutes later, Isaac wakes for his first feed of the night. But, such is life.

Posted in EDS.

27 comments

By Veronica – September 8, 2009
On this day

On this day three years ago, my little girl was born. A silent bundle, plopped onto my chest. Wide eyed, she looked straight at me.

This day; today, she turned three. Three. A big number for such a small girl. But then, she’s not a baby anymore, nor a toddler.

Today. The day after I popped my ankle badly. I woke up, smiled and helped open gifts. I took more painkillers than I probably ought to, braced everything up and put a smile on my face.

Because my little girl, she had turned three. And she deserved that from me, the happy and the smiling and the Very Happy Birthday she kept telling me she was having.

And I smiled and breathed deep when the tears threatened to flow. Because my little girl had turned Three and there should be no room for grief here.

I smiled at the barbeque in her honour. I held my shit together, helped along by more elastic bandaging than one person should fashionably wear. I smiled and laughed and took photos.

Inside, I died a little.

Because this is not how it should have been. We were not meant to be missing someone so badly that breathing hurts.

Amy turned Three and my world started to crumble. My walls, built up over these last ten weeks fell apart.

***

My physio set me adrift yesterday.

Here are your exercises, make sure you do them, feel free to ring me with questions, make an appointment if you need more braces, goodbye.

Somehow I can only think that I’m not the success story she was hoping for.

Treating Ehlers Danlos is not an easy task. I know this.

Still. I was hoping for a little more.

Hopefully my next referral gets me somewhere.

***

Adrift.

Washed in a sea of grief.

Sinking, through the bubbles.

Not breathing.

Until suddenly I am.

Breathing again.

Because I have to.

***

Today was hard. Harder than I expected, harder than I’d have ever imagined.

***

Today Amy turned Three and it was bittersweet.

[video]

Posted in EDS, Headfuck.

26 comments

By Veronica – September 5, 2009
Millions of Ideas

A million ideas whirl through my head.

Flavours for a wedding cake, learning to cook gluten free, things we can do today.

Unfortunately, my body is completely unable to keep up as I stagger around the house holding myself together. Parenting is perfect when done from a horizontal level. Perfect for me at least. Eventually the kids will need feeding or changing and I’ll have to stand back up, a larger undertaking than I’d like it to be.

I’ve had the flu and my brain is still foggy from it. Writing is not coming easily today, yet I still want to share; to write. A project of mine sits calling me. I don’t think my wrists will hold together long enough to do any substantial work on it. I set it aside. I could work on it, at the expense of tomorrow’s movement. I’m not willing to give that up though.

Tomorrow I have physio. I was meant to have been doing exercises for this last fortnight.

Unfortunately stability ball + Amy + 2 cats + a baby + the flu = no time/energy for exercise.

The cats run over the ball, making me thankful that it’s hard rubber. Amy jumps on me. Isaac cries.

In order to have space, I need to clean up the toys first. By the time that is done, I really need to lay down with my feet up before I fall over. It’s not conducive to exercises.

Instead I practise tightening and releasing all of the muscles I can feel in turn. It’s not enough, nor is it what has been prescribed, but mobility has not been my strong point this week.

I worry that the physio is just making me tired and isn’t quite tailored for what I need. It’s exhausting, having to hold yourself together to move. It leaves me with another thing I need to be doing, when all I want to do is sleep.

I can’t bend at the moment. Leaning over and then standing back up is more of an effort than I’d like it to be. The pain through my pelvis tells me that things are slipping, that I’m not holding it together well enough. My hips slip in and out of joint as I walk. I ignore it, thankful to still be able to walk.

It’s sunny outside. I sit on the grass and lean over to pull weeds from the garden. Isaac gurgles behind me, thrilled to be outside, pulling at the grass. His bouncer bounces frantically as he tries to kick himself out of it and into the dirt.

I know he’d love the dirt, but I’m not ready for that yet. Plus, the grass is wet.

Amy bounces on the trampoline. Golden highlights glint in her hair as she smiles. I like her again. I never stopped loving her, but she was a hard child to like some days. She was difficult. I don’t remember how I coped. Moment to moment I suspect. It was bad. It’s better now. Gluten is Evil.

Everything runs together in my mind.

A million thoughts. A million ideas.

There is an open home for Nan’s house next weekend. Surely that’s too soon? How come we’re moving so fast all of a sudden?

But then, there would never be enough time for me to come to terms with it. I need to just keep breathing, one foot in front of the other. There isn’t enough time to dwell. Not enough time to grieve either, but I can’t create more time.

Millions of thoughts. Rushing past, like water under a bridge. Or the bubbles that float past as you sink into the ocean.

I feel I’m drowning in a sea of grief and anxiety. Everything is blue and the bubbles are rushing past faster as everything slows down.

I don’t have time for this. I push to the surface and breathe.

Just breathe.

One step after another, tightening muscles as I go.

One breath after another, holding myself together.

****

Unrelated: I have a giveaway happening for US residents. (Sadly, not Australian ones. Grump)

You can either click here, or click on the giveaway’s tab at the top of the page.

Posted in EDS, Food-Issues, Headfuck.

11 comments

By Veronica – September 3, 2009
Dear Internet. What a lot I’ve got to share with you.

Dear Internet:

Well now.

A week ago, I was going slowly insane. Amy didn’t listen to a word I said, I was yelling more than any person should have to and I think my head was about this close >< to exploding. Amy was having multiple tantrums an hour, being told no was a TRAGEDY of the HIGHEST ORDER and I was constantly running two steps behind, just trying to stop her hurting herself or destroying things.

It was bad is what I’m saying.

Then I read this post on Mommy is Moody and little things started to add up. Reading about Zoeyjane’s daughter’s food intolerances and her behaviour after she’d accidentally ingested some wheat was like a light going off in my head.

So I quietly eliminated the gluten from her diet one night. I didn’t say anything, I just checked labels and watched her. She was okay. Not fantastic, but okay. I watched her all morning the next day and then let her have noodles for lunch. (Wheat noodles)

The down slide in her behaviour was enormous. Within an hour she was tantruming. She screamed, she hit, she bit. It was awful.

It was enough to convince me.

That night, Nathan and I sat down and discussed things. We talked and talked and decided that as a trial, Amy is going to be gluten free.

Three days later, the difference in her is astounding. Let me say that again, the difference is ASTOUNDING. She hasn’t had a tantrum in three days. No screaming. No throwing herself to the ground screaming like the world is ending. No biting (herself, not me). No hitting. No hurting herself in order to scream louder. Nothing. She’s been lovely.

Before, Amy used to be a little manic. She’d bounce from one activity to the next, never stopping longer than a minute, never able to sit still. She wouldn’t allow you to correct her on anything and if you tried to teach her anything (counting, colours etc) she’d scream at you to SHUSH! until you stopped. She learned things at her own pace DAMMIT and don’t you DARE try and talk to her about anything she didn’t want to listen to.

We own a bookshelf full of children’s books. None of which she’d let me read. After 2 pages, she’d get bored, snatch the book and throw it away. Eventually we stopped trying.

However.

Three days into a gluten free diet and guess what we did yesterday? We sang the alphabet. Together. I read five different books to her. We counted. We talked. She ran up and threw her arms around me, just because she wanted a cuddle. Without screaming. She is happy.

She’s a completely different child.

Before, I don’t think anyone except Nathan and I knew just how bad she was. She’s always been well behaved for her grandparents, even if she was a little manic. Nathan and I spent a lot of time just looking at each other, trying to make it through another day.

Now? We don’t need to do that.

Sure, we have the regular toddler issues of boredom or having to share her toys, but she’s not in constant meltdown.

It’s really fucking nice.

Oh and LOOK. I’ve just discovered that people with Ehlers Danlos Syndrome tend to have food allergies/intolerances. Now really, are we surprised?

Because somehow, with all else that it causes, I’m not.

Posted in EDS, Food-Issues.

33 comments

By Veronica – August 31, 2009
Isaac’s E.C.G.

As we walked into the hospital, I took a deep breath. The hospital smells like cleaning agent and regurgitated air conditioning. It’s not a smell you forget in a hurry. It was bitterly cold outside and I hopped up and down a little as we waited for the lift. Isaac gurgled in his pram and I smiled down at him.

I hadn’t thought about it. I’d pushed it to the back of my mind and refused to even dwell on the possibility of anything being wrong. It’s just a baseline appointment. We don’t expect to see anything wrong here. I breathed.

The lift bell rang as the lift arrived and we stepped in.

Level 2.

The same level all of Nan’s oncology appointments were on.

As the lift doors opened, my heart started to race. I stepped out with a confidence I didn’t feel and walked along the corridor.

We got to the junction of the two hallways. One would take me to cardiology. The other led to the Oncology doctors rooms.

I looked down the hallway I had walked so many times before.

Walk along there. Turn left and then left again. Smile at the receptionist and then a right turn into the waiting room.

The waiting room that would no longer hold my mother and grandmother. We three. The girls club.

From Nan’s diary.

[...] the good thing about Kim & Von is that we can talk about anything, I can be doom and gloom or happy and chatty it makes no difference to them they don’t get uncomfortable and can do the “what ifs” with me. What would I do without my “Girls Club”??

I breathed and walked in the other direction. Along another corridor we three had all walked together more times that I counted, and finally down a new one. One without any lingering memories.

We found our area and spoke to reception. Isaac gurgled in his pram and I lifted him out to feed him. He elected to smile and gurgle instead. Smiling back at him I gave up on the breastfeed.

5 minutes later, his name was called.

Here you go, come in. Can you take his tops off for me? Right. Let’s begin.

She was lovely. We made small talk while Isaac gurgled and tried to eat the ultrasound wand. I watched the screen nervously, but there is nothing to see on a heart ultrasound. The faint whoomp whoomp of Isaac’s heartbeat at intervals broke through the pictures being taken.

Well. Everything looks fine. There are no issues with his heart whatsoever. His mitral valve has no leakiness. It’s a perfect baseline. Once you get him dressed you can leave. No need to talk to the girls at the front desk. Will you need to come back again?

I’ll talk to the Paediatricians about it. I think they want to keep an eye on both children, but it wouldn’t be often, probably every 2 years.

That sounds about right. I’ll see you later then.

She held the door for us.

Thank you so much.

She looked at me and smiled.

Nathan and I walked down the corridors, back to where all my memories lay.

It’s really nice to walk out of the hospital with good news.

Yes. Yes it is.

We walked on.

Posted in EDS, Headfuck.

26 comments

By Veronica – August 26, 2009
Dear Isaac

Dear Isaac,

Next time you need to poo, could you not do it while your nappy is off? Today is not the first time I’ve hastily grabbed baby wipes and cleaned you up, trying to make sure nothing went on the carpet. Today IS however, the first time you’ve been faster than me.

Your sister would be proud.

Today for lunch you had: a small breastfeed, half a cup of mashed peas, a whole mashed pear and a slice of bread. You ate it all. You are slowly losing interest in milk-as-food, preferring instead to eat solids like the rest of us. Milk is a quick snack, grabbed between meals, or a mouthful here and there to satisfy thirst.

Except overnight of course. You drink more milk overnight than you do of a daytime. Thanks for that.

You’ve only had 2 naps in the last ten hours. Each of those naps were 20 minutes long. That’s not enough sleep. Not that I don’t love spending time with you, I do, truly. It’s just sometimes, quality is better than quantity. Tomorrow you can nap longer. I won’t mind, I promise.

That 10 minutes of non-stop giggles before? Awesome. The tired crash you’ve had since then? Not so awesome.

Your eczema has come back. I know, it sucks. We’re slathering you in cortisone cream and sorbolene, but until it starts to work, could you possibly refrain from scratching your eyes out? In the end you will be better for it. Eyes are handy things.

Your mobility is outstanding. You can’t crawl yet, but that doesn’t stop you wiggling all over the house. A quick note though, there is nothing interesting under the futon. You’ll just get stuck. Again.

You’re growing at a rate of knots. Clothes that swam on you yesterday are fitting perfectly today. I admit, this scares me a little. Soon you’ll be big and your head won’t smell nearly as good. I’ll cope though.

Oh and one last thing, if you could refrain from letting your joints click when I change your nappy/pick you up, that would be lovely. You have an appointment for an echo-cardiogram this week. It’s an Ehlers Danlos thing. I’m sure everything will be fine, but we’re just checking. Your sister will have to have one too. And me.

Anyway little man, I love you very much.

Love, Mummy.

Posted in EDS.

18 comments

By Veronica – August 22, 2009
Wrist braces and I click apparently.

My physiotherapist is lovely. No, really, she is. Funny and amusing and everything.

I still walked out of the appointment with a good case of bleh though.

We sat down and she asked about which joints were affected. I may have laughed a little bit and asked where she wanted me to start.

From the top.

Okay.

So, I started from the top and worked my way down. By the time I’d listed ten or so joints she was looking overwhelmed and I hadn’t even made it down my arms! She’d run out of room on her sheet by the time I got to my feet.

I’m pretty sure I still forgot things.

She took a deep breath and I could almost see her brain ticking over as she realised that this was a much bigger job than she thought it was going to be.

I could have told her that.

She had me walk along the hallway while she watched. My ankles/knees/hips obliged me nicely by clicking loudly with every step.

You click lots.

I know.

Twist for me like this. Now this. Okay, this? And now this. Hmmmm. Wow, you really are quite flexible.

I know.

Then we laughed.

Because dude. I know.

We fitted a wrist brace, as well as a knee brace. I couldn’t afford the knee brace today, so we settled on more support bandages. They’re doing their job well enough, so that will do for now. I need to think about ankle braces, because really, I’m sick of being tipped sideways as my ankle rolls. There is nothing more sexy that a sudden stumble as you walk down the steps [across the room, through the supermarket...]. Suggestions? Anyone? (BendyGirl, Carol, Achelois, I’m looking to you for suggestions)

Next week we’ll be looking at half an hour of core stability exercises and half an hour of Pilate’s.

But I’m still bleh.

Maybe because while she was lovely, she didn’t really seem to have any advice or ideas about what to do to minimise long term impact. I know that she is more used to working with sporting injuries than long term floppiness, but still.

[I know that today was just an initial consult and that she might spend the next week working out a Very Big Plan. I know this.]

It just would have been nice to walk into there and find a physio who had a definite plan in mind already. It’s great that I am so active in my own medical care, but sometimes it’s also exhausting. I’d love to pass the reins to an expert, if only for a little while.

Although I’m still a little amused at just how her face looked after those first ten joints with issues still hadn’t made it down past my hands.

And right now?

I’m researching just what kind of dye I need to dye an icky tan coloured wrist brace a decent colour and also what colour I want.

Feel free to input suggestions.

Posted in EDS.

28 comments

By Veronica – August 13, 2009
Physiotherapy and fear

I picked up a pen today to write in my journal. The further I got down the page, the worse my handwriting got, until at the very end, my hand sort of collapsed and I gave up.

I’d written maybe 40 words total.

I spent the next hour massaging various bits of my hand back into place, while clutching it to my chest. It’s still sore.

I start physiotherapy tomorrow. The rational side of my brain knows that it will be fine and that we will get things moving for some braces for my worst joints. The irrational side is telling me that I am faking this, that I’m not really sick, that I don’t have anything wrong and to buck up and grin and bear it already, you faker.

Seven years of being told by medical professionals that nothing is really wrong has that effect on a person.

It’s also a shift in my perception of myself. My wrist needs bracing and no matter how I go about it, a wrist brace will be a very visible sign of something ‘wrong’. I’m not sure how to handle that. Making the invisible visible with external aids.

I’ll still be me. I’ll just be me with accessories. Ehlers Danlos Barbie; now comes with joint braces and a side of pain killers. Walking stick sold separately.

I sat down to type a list of joints that dislocate and sublux today. After I’d listed just about every single major joint in my body and some minor ones too, I gave up. Instead my bit of paper now says most of them. fix me.

Tomorrow.

***

I had Pink playing on the computer as I pottered about the house yesterday. Amy started singing.

So what, I still a rock star, I’ve got my fuck you…

[actual lyrics: So, so what, I'm still a rock star, I've got my rock moves... I see where Amy got confused]

I left the room.

I nearly wet myself laughing. I laughed so hard I spat my cup of tea all over Nathan and the clean washing. I’m glad I wasn’t in front of the computer.

She’s brilliant. Funny. Frustrating. Exhausting.

She’s almost three. Where did that time go?

***

Nathan went and got my camera out of the bedroom this afternoon.

Honey, why won’t your camera turn on?

I grabbed it. I fiddled buttons, I switched things on and off. I got steadily more stressed and nauseous.

You got it out of it’s bag? On top of the cupboard? I DON’T KNOW! It was working when I used it a few hours ago! What did you DO?!

I nearly died.

It’s battery was flat. A quick battery change later and I was breathing easily again.

Please, don’t do that to me again.

***

Oh and more photos. Because I’m enjoying sharing them. Suck it up.

Posted in EDS.

29 comments

By Veronica – August 12, 2009
Got Nothing

I knew it was coming. It’s actually been creeping up one me slowly for the last 6 weeks or so, but I’ve been pushing through it. The kids need food and the floor needs vacuuming because honestly, while I can look the other way when Isaac eats a tissue (clean? dirty? ummmm, you tell me…) I can’t ignore him trying to chew his way through Amy’s left over cereal she spilled (it was dry cereal. So sue me) as he gnaws on the dogs leg and we all sneeze our way through the dust.

I’m crashing.

The pain in my hands is getting worse. I’ve been spending an awful lot of time wandering around clutching alternate wrists and rubbing them. Panadol has been disappearing like lollies as I just get through today.

Horizontal parenting has been my friend as I need to lay down right now. Isaac wiggles all over me while Amy jumps on the both of us and we all lay in front of the fire while I pray no one needs anything because standing up might make me pass out.

And today, I think I’m done.

My blood pressure has been so low that by the time I had the kids in bed, I fell onto the couch and told Nathan I was dying. Heh.

Now Nathan. I love him, but he can’t read my mind. Terrible flaw in a man if you ask me. I have to actually (GASP) tell him exactly what I need to make me feel better. So I flopped all over him with my feet higher than my head to prevent me passing out and requested the things I need to feel better.

A sandwich with the left over roast lamb. Lots of salt to get my blood pressure back up. And salad dressing because I wanted to pretend it was my go-to cure of cucumber, salt and vinegar.

A pillow to raise my feet until I stopped feeling like my head was just going to float away…

Oh and some panadol. And a cup of tea to wash them down.

Surprise surprise, if I give the man concise directions, he’s pretty awesome. I think I’ll keep him.

So crashing. Everything hurts and I can’t seem to hold a train of thought very long. Isaac has gotten incredibly heavy and omg Amy please don’t jump on me. I can’t catch you today.

Bleh.

I’m going to go and hide under my rock for a little bit.

Have some photos to tide you over.

On the upside, Amy pooed in the toilet for the first time ever. I’ve never been more pleased to see poo.

Photos of the kids next time. Lately they don’t sit still long enough for me to take any good ones and I don’t have the energy for chasing.

Oh and Mum is hosting a give-away. You should go and enter.

Posted in EDS.

24 comments

By Veronica – August 10, 2009
Ehlers Danlos Syndrome. What day to day life is like.

Firstly, for anyone new, Ehlers Danlos Syndrome is a genetic connective tissue disorder that affects the collagen in my body. I’m hyper-mobile, my joints dislocate and sublux and it hurts. I joked on Facebook that I’d skipped bendy, moving all the way to floppy and as much as it was tongue in cheek, I fear that it’s true.

***

I wake up in the morning generally pretty tired. Some nights I’ve fed Isaac 3-4 times in the last 6 hours, which is not exactly conducive to rest. Add in a nightmare or two from Amy and night time leaves me feeling like a yoyo.

The first thing I do is flex my ankles and make sure my feet are all properly in joint. Then, I roll on either side and flex my hips to make sure they are in completely too. I can’t just jump out of bed, otherwise I’ll fall over pretty fast. Before I was diagnosed, I did these things without actively thinking about them.

This morning I woke up with a subluxed shoulder. Actually, I’m not confident that it was my shoulder joint, I think it might have been my shoulder blade or a rib underneath of it. Breathing in hurt and I couldn’t move my elbow away from my side without gasping. Carrying Isaac was a little bit of a nightmare as it was my baby carrying arm that was playing up.

I poked at it a bit, wiggled it around and went pretty white from the pain. Eventually it went back into joint, but not before I’d considered taking the strong pain killers in the fridge. The only thing stopping me was that I hadn’t taken them before and the last thing the kids needed was a mother who was stoned as well as half broken.

Lots of mornings I wake up nauseous. It feels a lot like morning sickness actually. I change colour from green to white and then off to grey as I stumble about the house making breakfast for the children. Sometimes I start to feel better after a cup of tea, other days I’ve just got to wait it out until the afternoon when time works it’s magic. The mornings when I don’t wake up nauseous are lovely, however I know that I’ll probably be going to bed with a bucket and a cold face washer that night. The nausea hits every. single. day. I take Pramin for it (Maxalon) and it helps me sleep through the worst bits, however if I took a tablet every single time I felt queasy I’d go through a prescription a week.

So I suck it up and eat crackers.

I can’t hold a pen to write anymore, as it hurts too much. Instead I type. I can’t turn on my water taps easily, I have to use two hands. This makes bath time for Amy, uh, interesting. Sometimes she has to make do with baby wipes until I can get Nathan to turn on the water for her.

Shaking my hands after washing them results in dislocations through my wrist and fingers. I dislocated my finger the other day undoing the milk carton to make myself a cup of tea. When I was in the hospital with Isaac, my pointer finger refused to go back into joint and stay there, popping in and out for a good hour. I was seriously considering asking the nurses for some tape so that I could tape it back into place.

I tried to lift my big mixing bowl a few days ago and my wrist just sort of went flop and fell apart. Nathan saved me from dropping everything on my foot, but still. I’d like to be able to hold onto things for just a little bit!

My blood pressure is low. 100/60 or 90/50 depending on how much work I’ve done in getting to the doctors chair to be checked. On days at home I suspect it’s lower as I get dizzy and faint easily, even when already laying down.

There are plenty of other things too. I don’t heal well and I scar terribly. I bruise over nothing and my legs look like I’ve been beaten. I get stretchmarks in the stupidest spots and they just keep appearing and getting bigger. My skin tears and stretches. Even though I’ve lost all my baby weight (not necessarily a good thing for me) I’ll always have a ‘muffin top’ because of my skin being stretched out during pregnancy. I’ve got to learn to accept that.

The Internet is my saviour. Through reading about Bendy Girl’s everyday issues and Shannon’s diagnosis of EDS, it prompted me to ask my GP about it and when he shrugged it off, ask for a referral to a geneticist.From there I’ve discovered Achelois and Pop and Ice, both of whom deal with EDS.

And here we are today.

I’m not complaining; far from it. I’m simply stating facts as they pertain to me. I’m having to learn to ask for help in simple everyday things and it’s so hard. I’m independent dammit, I don’t need help weeding the garden or stirring dinner or brushing my hair. Only I do and it’s hard to accept.

So I’m writing this. Mostly to get it out of my head, but also so that I can refer IRL people to it if the need arises. EDS is an invisible disability and not enough is known about it in the wider medical community. I’m hopefully going to be working to change that down here in Tasmania.

Posted in EDS.

29 comments

By Veronica – July 28, 2009
Sleep and Toys

Things Isaac did just do:

Blew raspberries on my boob.

Got all excited and tried to eat my chin.

Smiled and goo’ed.

Things Isaac did not just do.

Feed.

Sleep.

It’s past 11pm. How is your day going?

***

I cleaned out my toy cupboard today. It’s looking a little … sad. Three toys that vibrate and one of those I won’t use for anything other than shoulder and back massage. (Why? THIS is why.)

Do you think if I asked nicely Eden Fantasys would send me some more stuff to review? Cos you know, I wouldn’t mind. Would you?

***

Isaac’s seizure, blah blah blah. I’m done researching. There is scary scary shit out there that causes seizures in babies with Ehlers Danlos Syndrome and I just don’t want to think about it anymore. LALALALALALA.

Fuck you research.

I’m waiting on a phone call with a date to have Isaac suffer through an EEG.

Until then, you know as much as I do.

He hasn’t had another one, so that’s one good thing.

***

Panic attacks.

How normal are they?

Because damn if I’m not having to remind myself to breathe as everything closes in on me and my heart races and oh my fucking GOD.

I’m sick of them.

They’re grief fueled, but still. They can go away now.

***

My baby is still not sleeping and YES, I KNOW I haven’t had anything decent to say lately. But, you know.

How are you?

Posted in EDS, Headfuck.

29 comments

By Veronica – July 20, 2009