Ehlers Danlos Syndrome

And everything keeps going down the drain.

by Veronica on September 29, 2010

in Ehlers Danlos Syndrome, Headfuck, My body is broken.

There are things you don’t want to hear when you go to the doctor.

Like – You have the back of a 60 year old. When Nathan is only 28.

His back is bad. Really bad.

There are arthritic changes, a bulging disc, some compressed discs, bone spurs, narrowing of the nerve canals and degenerative issues.

Never gonna get better kind of bad.

Sure, loads of physio should help in the short term, but as far as I remember, nothing can be done for bones that are arthritic, or bones that are breaking down.

***

I’ve been seeing a Gyno for my insane periods and heavy bleeding/cramps like labour pains. That’s the backstory.

I went to see them yesterday, to follow up on how the trial of a contraceptive pill went.

[paraphrasing, as best I can, because somehow, telling you without the conversation added is too hard]

‘So, how did the pill go?’

‘HA! Badly. Really badly. I came off it early because it was bad.’

‘Bad how?’

‘Mood swings, depression, increased dislocations, etc etc. Bad.’

‘Well, in situations like yours, we really like to try the contraceptive pill.’

‘Yes, but the pill doesn’t agree with me.’

‘I can see. And you seem very against trying it again.’

‘Yes.’

‘So, we’d like to try the Mirena.’

‘No.’

‘Huh? No?’

‘I have anecdotal evidence to tell me that the mirena would be really bad for me’ [he tries to cut in] ‘and YES, I KNOW that the progesterone supposedly doesn’t leave your uterus, but really, my body is so sensitive to progesterone that I don’t want to trial the mirena.’

[he looks very spluttery]

‘We would like to try the mirena. If you don’t want the mirena, then we’re looking at things like gonadatropins and they’ll make you gain lots of facial hair and will deepen your voice and -‘

‘Well I don’t want to trial those either.’

‘If you’d try the Mirena, we wouldn’t have to look at gonadatropins.’

‘I don’t want the Mirena.’

‘Gonadatropins will make you gain a lot of weight… wait, I’m going to consult with my boss.‘

[A few minutes later, his boss- the doctor I saw last time enters.]

‘Hi Veronica, so you trialled the pill?’

‘Yes. And it was awful. I stopped it after 3 weeks because I couldn’t cope anymore.’

‘What happened?’

‘My joints fell apart, it felt like I was walking on a wobble board instead of a pelvis, I was angry and sad and it was horrible. So I stopped.’

‘Good, that’s what we discussed. So really, our next option is the Mirena.’

‘I don’t want the Mirena.’

‘It’s really the best option.’

‘I don’t believe it’s the best option for ME. I think it will make my joints worse and YES I KNOW the progesterone won’t leave my uterus, yada yada, I’m not willing to put a coil into my uterus to just see.’

‘We’re really running out of options here, the Mirena…’

‘No. I am opposed to IUD’s on ethical grounds too and really, I don’t think poking my internal organs with metal and making them angry is going to make me feel better on the whole.’

‘Ethical grounds?’

‘Yes. I don’t like how they work.’

‘Do you KNOW how they work?’

‘I know a plain IUD doesn’t prevent ovulation or conception, it just prevents implantation. I know the Mirena with it’s progesterone generally prevents ovulation, and also that it prevents implantation in the event that conception occurs. I don’t want the Mirena, I don’t want something I can’t stop using myself if I get bad. I can’t afford to wait weeks until I can get in here to be seen and fixed and HONESTLY, I’ve been on the wrong side of side effects and statistics for so long, I’m not prepared to mess around with things.’

‘Right. Well then.’

‘Can we try something to help with the cramps and pain instead of trying the mirena? ‘

At this point, I feel like I’ve been fighting the doctors to get ANY sort of health care that doesn’t involve inserting a foreign body into my uterus and leaving it there. Not to mention the absolute shock on their faces that I wouldn’t accept the Mirena as ‘the best possible thing’ [all hail the fucking copper coil] and wouldn’t be badgered into it. Not even with the ‘you’re gonna grow facial hair and get really fat’ scare tactics that the original doctor was using. I mean, fuck.

Eventually, the doctors agree on a course of action, medication wise and send me away with a script.

45 minutes later, I get to read all about the reasons I should not take a drug to help my blood clot.

Like, don’t take the drug if anyone in your immediate family has had a blood clot. Both Mum and Nan have had blood clots.

Don’t take the drug if you have bruising, especially bruising without trauma. Hello fucking EHLERS DANLOS.

Don’t take the drug if you have irregular periods. Um yeah, that’s part of why I’m seeing a Gyno. I’m 21, I’ve had periods since I was 12 and I’ve had 2 kids, my periods should be fucking regular. They aren’t.

I’m just so tired of having to fight the doctors for things that might help. Tired of them not asking questions they should before they prescribe something. Tired of being treated like a disobedient child, for not falling into line and letting them do whatever ‘they think best’.

Tired of feeling like these bandaid fixes don’t do anything towards working out why my body isn’t doing regular periods, why I bleed for 10-12 days each period, why the periods feel like labour pains, and why I’m having hot flushes.

Tired.

I’m booking an appointment with my regular GP to discuss the new tablets before I even think about taking them. Somehow, knowing how my body works and which side of the stats I fall on, I’m a little concerned about taking something to promote blood clotting.

On the upside, there was a Med Student there during the whole appointment and I got ages to talk to her about Ehlers Danlos while the doctors were consulting in the other room. She was lovely and interested to know how EDS presents in normal cases.

So good deed done. Even if I still want to bang my head against the wall.

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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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Ehlers Danlos and Nausea

by Veronica on August 11, 2010

in Ehlers Danlos Syndrome

Probably one of the hardest things I find about dealing with EDS is the incessant nausea. It’s one of those things, that if the nausea went away, the rest of the EDS would be easier to deal with.

But add nausea to extreme fatigue, joint pain and constant dislocations and I get a little miserable.

Some things help – oranges for example. If, when I’m feeling like throwing up, I can force myself to suck on some orange segments, I can usually stave off the throwing up for a little bit. I also have anti emetics, which help with the vomiting, but don’t make the nausea go away. It’s really frustrating.

Even more frustrating when I talk to doctors (not my regular GP, who prescribes Pramin without blinking) and they can’t understand why nausea is associated with EDS. Aware only of the joint and dislocation side of things, the other symptoms of EDS often get overlooked, or played down.

Like a geneticist said ‘I have no studies showing incidences of nausea or more dislocations as it relates to a hormonal cycle’ regardless of the fact that anecdotal evidence shows time and time again that a rise in progesterone leaves female EDSers with more floppiness and nausea is a part of EDS for everyone. But of course, if it’s not in a study, published in a journal somewhere, then I can’t POSSIBLY have those symptoms as part of EDS.

Ugh.

At least now, after reading BendyGirl’s blog, I know I’m not the only one who vomits after sex! Maybe it’s all the joggling of my stomach, or maybe it’s the hormones released at orgasm, but either way, sex = nausea. Luckily, sex is more than worth it.

But I digress.

I’m stuck in a sort of rut with my nausea lately. A mucked up cycle ala a blighted ovum has sent me spiralling back into a 6 week long cycle, with ovulation fuck knows when – day 14 it feels like, EXACTLY where it should be. Unfortunately, that means I get a month of rising progesterone levels before I get my period and they fall off again. Which leaves me retching and feeling like the dead for oh, about 30 days of 42.

Not fun. Not fun at all.

When I see new doctors, for whatever reason, I do my best to give them a run down of what they’d expect to see symptom wise from someone presenting with EDS, who didn’t know that they had it. I do this to student doctors, physio’s, nurses, basically everyone in the medical field I can get my hands on. I educate them.

If you are a doctor/nurse/friend and someone presents with fatigue, nausea, achey joints, headaches, reduced concentration and a general feeling of unwellness and it’s lasting for a long time, months or years, then maybe, just maybe, it’s a connective tissue disorder. Generally, those symptoms above are the ones people notice, because if you’re bendy, being bendy is so normal that we don’t think to tell the doctor ‘On top of all that, I can put my feet behind my head and I’m amazing at yoga and athletic sex, oh and by the way, my joints do this *click*’.

The other thing I tend to try and educate doctors on is that most of the time, if they can’t come up with a diagnosis, it’s not because there isn’t one, but because they’re not looking hard enough or thinking outside of the box. I never ever want to see anyone else fobbed off with a diagnosis of Chronic Fatigue Syndrome if there is more to be done or investigated. Blood tests are not the be all and end all of diagnostics.

There. Educating. See?

When I was first sick and trying to get a diagnosis, because of my vomiting and nausea issues, I was ‘diagnosed’ with just about every form of eating disorder out there. Which was insane, because given a choice (and when I was feeling well) I was perfectly capable of eating bread and jam, topped with whipped cream, all without counting a single calorie or even feeling guilty about it.

I spent a lot of time then living on pasta with a little tomato soup through it, topped with lettuce and tomatoes. Healthy food and somehow, pasta (gluten containing, sweet sweet gluten) and salad was easier to keep down.

Nowadays the only pasta in my house is gluten free and somehow, it’s not quite the same, even when I do top it with salad.

So nausea. Probably one of the more draining sides of EDS. I’m sick of not sleeping because I’m too busy head down in the toilet, or not eating because I can’t swallow without retching.

Not fun.

If you’re interested, other EDSy bloggers can be found here:

BendyGirl
The Tensile Times
BubbleGirl
Everyday Stranger
MeriLizzie

(I know I read more than these, but my brain is blanking. Speak up if you’re blogging about EDS and I’ve not linked you, I’ll edit to include you.)

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It’s like being hit by a load of bricks and then run over by a car.

by Veronica on July 22, 2010

in Blogging, Ehlers Danlos Syndrome, Gotta Laugh, Headfuck

Yesterday, we had a Paeds appointment for Isaac. Nothing major, just a touch base kind of thing.

However.

The kids woke up at 9.30am, 40 minutes before we needed to walk out of our door.

Okay, we can do this I thought, as I bustled around getting ready for a quick shower – only, when I turned on the water, nothing happened.

Our pipes – were frozen solid.

A fortnight or so ago, to prevent the pipes from freezing again, I’d asked Nathan to wrap insulation around the pipes to protect them. He grumbled, but he did it. Unfortunately, it had gotten so cold that everything had frozen despite it.

I wavered between going to the appointment, or cancelling at the last minute and decided that even without showers, we really needed to touch base. So a quick baby wipe bath later (ugh!) and a frantic dash to get the kids ready, we were on our way.

Only to run into every. single. set. of roadworks between here and the city.

By the time we were reaching the outskirts of Hobart, I was getting very ill and preparing to vomit into a book depository envelope. I opened the windows wide, let in the freezing air, took 2 pramin and hoped I wouldn’t have to throw up.

We parked, just as my nausea abated and I got the shakes. I know once I start to rattle (normally hard enough to make my bedding fall off me if I’m at home) that I’m not going to vomit. Power walking to the hospital, 20 minutes late, I’m not sure what Isaac thought was happening as I held him tightly and shook around everything.

Unfortunately, once I’ve gone through the nausea/feel better/shakes thing, the next step on the agenda is bone crippling exhaustion.

I was a mess.

We made it through the appointment, however, the drive home was less than fun as I huddled in a small ball in my seat, shaking with exhaustion and wishing I could just teleport home, instead of having to put up with 50 minutes worth of driving + stops for petrol and stuff.

Ugh.

There are huge gaps in my memory of the drive and that’s probably the best thing.

Once home, I collapsed into bed with my feet propped up on pillows (the nausea was likely a huge blood pressure dip) and fell asleep, despite Isaac tucked under my chin and trying to poke my eyes out. I was just that exhausted. It hit me like a ton of bricks.

2 hours later, I woke up, still exhausted and dragged myself out of bed. Nathan had cleaned the house and was in the middle of making dinner. Yay Nathan!

Today, I feel much better – it’s sunny outside which helps and I slept for 8 hours straight.

However, I know the exhaustion is lurking still. The Cymbalta, while working amazingly for anxiety, made me rather manic. Which means I used up all my energy for the next month, rushing around like a mad person, getting things done.

I’ve stopped the cymbalta now (god, I feel like a see saw, I write a post saying ‘It works! It’s brilliant!’ and then another going ‘Ugh, side effects, sort of giving me the shits’ and then another saying ‘I’ve stopped the drug, the side effects were making me sicker than the original thing we were treating’. My body – not fantastic at dealing with meds) and I think yesterday was part of the backlash of stopping.

At the very least, I’ve stopped being so nauseous all the time – instead it just comes in big waves like normal, my skin is clearing up – it just needs to heal a little faster, and my anxiety, well, I can deal with that on my own, better than I can cope without orgasms and food.

So yeah, the Cymbalta trial ended sort of badly. Heh.

Also, seeing as how my exhaustion is just sort of sitting under the surface ready to come back, I’m going to be doing some reposts of my older stuff that you might not have seen. I promise it will be funny stuff at least. Also, if anyone wants to put their hand up and guest post, I’ll accept guest posts too.

It’s like a Sleepless Nights holiday, only not really.

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Cymbalta, Ehlers Danlos and Teething.

by Veronica on July 17, 2010

in Animals, Ehlers Danlos Syndrome, Gotta Laugh

This morning when I woke up and discovered that my skin was still looking godawful and I looked terrible, I thought that maybe I’d just hide in a bed somewhere warm for the day. Of course, life with kids never works out quite that way and while I did manage 30 minutes in bed before lunch with a book, I had Isaac snuggled under my chin and Amy curled up in the small of my back, eating an orange and dripping juice everywhere.

I think part of my roller coaster of manic energy/total exhaustion has been due to my new tablets. The cymbalta have been fantastic for my anxiety since I got over the hurdle of the first week – in which I spent the days feeling stoned out of my mind, not sleeping and hurting all over – however, they do have some drawbacks.

My appetite has been killed dead. Now that wouldn’t be so bad, if I didn’t get sick so fast. Without eating, my body forgets all the things it’s meant to be doing, like healing and not producing giant bruises and spectacular pimples. Cups of tea, sadly, while I could keep them down, weren’t doing anything for my health, because it’s all I was ingesting. I’m making a giant effort to at least drink milk and eat lots of fruit and while I’m still taking anti-nausea pills like they’re going out of fashion, I’ve not retched today and I have managed to eat. Not a lot, but I ate.

The cymbalta also make me incredibly restless. I was hoping they’d make me a little drowsy, so I could take them before bed, but a few nights of not sleeping convinced me that that’s not how they were going to work. I’m having trouble sitting still to do anything, finding myself wandering away mid sentence in a book, or drifting towards the fire a few lines into a blog post. The children think this is great and follow me around the house, hoping that I’ll dole out chocolate instead of setting out to make a proper lunch. I’ve not done it yet, but they’re forever hopeful.

On the upside, like I mentioned above, they’ve been fantastic for my panic attacks and so so good for the neuropathic pain episodes and despite the first week of insomnia, I am sleeping well enough at night, once I can finally switch off. Surely 6 good heavy hours of sleep is better than 8 broken hours. Right?

In other news, Isaac is teething, with 3 molars making their way through at the moment. While he’s not waking at night – he’s a better sleeper than Amy, still! (who is waking at night, regularly) – he is completely miserable during the day, clinging and whining a lot. It’s draining on me, as I’m falling apart a little and he wants to to snuggle on my chest, while I stand up and rock him. Sitting down = unacceptable. He will allow me to sit on the fit ball, but my proprioception is so terrible that I am certain it’s only sheer luck we haven’t fallen off it yet. At this point, with him clingy and completely napless, I would KILL for a rocking chair. It’s on my wish list of things I’ll never have. Like a dishwasher, a maid and spare time.

He was happy today to see my mother and even happier to wander around outside with us for a while, although he had a tantrum of epic proportions when we came back inside because I couldn’t stand any longer. He can do a brilliant tantrum, with the face down screaming and kicking. I’m sure it will be amusing until the first time he does it in public.

Amy was also thrilled to be wandering around outside with her grandmother and her mother, even happier when Mum found two duck eggs, laid early this morning. (They definitely weren’t there yesterday evening when I did the rounds) At this point, we’ve got 5 ducks and a drake, 6 chooks and a rooster and we’re getting two hens eggs a day. I’m going to steal some of the ducks eggs, just long enough to get us into spring, so that I won’t be worrying about the ducks (and hens) raising babies in the bitter cold. When they start to sit, I’ll keep you updated.

I’m hanging on Spring and the warmer weather, dying to get things growing properly in my garden and to be eating something (other than eggs) that I’ve had a hand in producing. Not to mention how much better my EDS feels when I’m not frozen solid and I’m able to sit in the sunshine, without the wind stripping the flesh from my bones. Come on warmth.