My body is broken.

Hitting the wall

by Veronica on December 9, 2011

in Ehlers Danlos Syndrome, My body is broken.

The problem with a condition like Ehlers Danlos is that sometimes I will go weeks or months without any major issues. That is of course if we’re not counting minor dislocations, nausea, vomiting and tiredness in our major issues list and ignoring the arthritic pain and assorted aches.

This means that I get to function relatively normally for a period of time. Yes, I puke of an evening and have to manage what I eat relatively well. I also dislocate my ribs/shoulder/wrists/ankles/fingers every day, but that isn’t a huge deal. They’re all relatively easy to reduce and while painful, I don’t scream over those. This is what relatively normally means to me, but we can work with this.

The major problems appear when I’ve been running on empty for a while. The holiday season is rough on me – rich food, family commitments, later nights, excitable children – these all conspire to use my energy faster than a week, say, in the middle of winter.

So when I had a positive pregnancy test, a hospital admission for Isaac, a wedding to organise and execute, a miscarriage and a few other unbloggable things happen within a fortnight, you might not be surprised to hear that I hit a brick wall sometime on Tuesday, as my reserves of any remaining energy disappeared and I found myself pretty unable to do anything normally.

You might not be surprised, but these crashes always take me a bit by surprise (apparently, I am more determined than smart sometimes and seem to think my body should run on willpower alone) and leave me grumpy at the whole situation.

After all, there is only so much you can accomplish when the ability to walk has just about deserted you and your children are running in circles and demanding feeding.

Thank god for Nathan, anyway.

I am trying to take it easy, but you know what? I’m just pissed off. I’m pissed off that I can’t eat right now without wanting to vomit, that I can’t walk, that I can’t move without feeling like someone three times my age, constantly keeping an eye on my joints to make sure nothing breaks.

I’m pissed off, knowing that getting my boob-to-knee support wear on would help – but that I know I wouldn’t be able to get it on in the first place, without dislocating at least one major joint. And I’m too scared to do that.

I’m just pissed.

I know that this will get better. My last big crash that felt like this involved me quitting my job and spending six weeks in bed and 12 months recovering (I was pregnant with Amy during that period, which didn’t help matters) before I felt like I had a decent control over my body again (insomuch as you can control vomiting and dislocations).

Today I have at least managed to sit semi-reclined and deal with emails and write this post (we’ll ignore the dislocared thumb joints near my wrist, I don’t type with my thumb anyway), but it’s a slow process.

I used a good deal of my energy resources today just having a shower, and suspect that my entire afternoon will be spend curled in a chair with my kindle, trying to work out if my hands are stable enough to hold a cup of tea. Yesterday they weren’t, but I’m hoping for progress.

And maybe, if I’m lucky, tomorrow will be better too.

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Recovering

by Veronica on December 7, 2011

in Grief, Headfuck, My body is broken.

Apparently when you have a fortnight as crazy as I did, you get to the end of it and your mental state is fried.

Who’d have thought it?

In lieu of blogging, I’ve been spending all of my time drinking tea and reading books (Diana Gabaldan’s “Cross Stitch” series) and contemplating my lack of energy. A little bit can be attributed to depression, a lot of it was sheer exhaustion. Today is better, thanks to a psych appointment yesterday, increased sunshine and warmth and an hour planting flowers in the orchard.

Admittedly my pear tree isn’t looking great, but it’s the first year in the ground.

Isn’t my view pretty at the moment?

I got my second set of HCG results back yesterday. Sixteen. ARGH. I’m still wanting to throw up on and off, which has to be my reaction to the progesterone in my system. It’s unpleasant, regardless of what is causing it.

My mental recovery has been relatively easy. Because I’d bled from the very beginning, I wasn’t entirely convinced that my pregnancy was going to be viable. Being proved correct wasn’t what I wanted, but knowing that nearly every woman out there has gone through it makes it a little easier. Misery loves company and all that. Knowing that I wasn’t alone in things, that helped.

Thanks to our wedding gifts, we’re hopeful that we can get the toilet moved inside in the new year, which will be great. Another winter of freezing near to death in order to pee doesn’t appeal to me.

We’re down to two ducklings now. I started listing all of the things that might have happened to the other babies the other day and then went “huh. I am really not surprised.” It’s a harsh world for small bundles of yellow fluff.

I also bought myself some water colour paints. Now I’m just trying to work out if I have the energy to paint myself a pretty new header for here.

 

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I went for an obstetric ultrasound and all I got was this lousy empty uterus

by Veronica on December 1, 2011

in Headfuck, My body is broken., Pregnant. Finally.

A week before the wedding, I got a positive pregnancy test, which was lovely and fantastic and completely unexpected. Seeing as how we weren’t planning on starting Clomid until January, a natural pregnancy was a bit of a shock.

But that’s okay – it was a good shock and I only told a very few people because I was spotting (my period started and stopped again, for those keeping track at home) and we weren’t sure what was happening.

Then of course we ended up in Hospital with Isaac; running around like idiots getting the wedding prep and I was quietly vomiting in the corners when I had the chance. So much fun.

We got married and while I spotted a little over the weekend, it wasn’t anything too major and I wasn’t bothered. Bleeding through an entire pregnancy with Isaac has raised my tolerance levels for spotting and such.

Monday, I made an appointment with my GP to get my pregnancy confirmed and an ultrasound scheduled.

Monday afternoon, I started to bleed relatively heavily – although not as heavy as a normal period, nor as painful.

By Tuesday, it had lightened up a little, to the point that I wasn’t certain that I’d lost the pregnancy.

Yesterday, I was still bleeding, but fed up with waiting for my appointment, I begged my GP to fax a referral off so that I could have an ultrasound ASAP to find out what was going on.

Nothing bothers me worse than not knowing. Limbo is a special kind of torture for me and that limbo of bleeding too much to feel safe in my pregnancy, but not enough to be certain of a miscarriage was hell.

This morning I got my ultrasound.

And nothing.

Empty uterus. No sign of pregnancy there at all.

Which is fucking ridiculous, considering I spent the morning throwing up, and got another positive urine test yesterday evening.

My body is fucked, you guys. It can’t do ANYTHING right.

I went back to my GP to have blood HCG done and he’s as baffled as I am.

Either I lost this pregnancy with minimal cramping and bleeding Monday night (unlikely?) or something weird is going on. Considering my body never falls on the easy side of statistics, my vote is for weird.

I know when we are likely to have conceived (within the limits of sperm life), because I’m anal and I chart everything, but something is amiss here.

Namely, the lack of fetus like material in my uterus. Or a uterus that looks pregnant at all.

Argh.

I’ll have my blood HCG levels back tomorrow lunchtime and if the levels are still pregnant (very likely) then I’ll have a second lot of bloods drawn on Monday to test and see if they’re going up or down.

But until then, I’m stuck in this limbo hell, bleeding and vomiting, feeling pregnant and bemoaning my stupid uterus.

And watching for signs of ectopic pregnancy, with increasing stress.

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Happy Birthday to me!

by Veronica on November 12, 2011

in Gotta Laugh, My body is broken.

This is my present from Amy.

It’s her and Isaac, outside throwing a ball, while ducks fly overhead.

It is absolutely the best birthday card I’ve ever gotten.

I’m twenty three today and feeling good about the whole thing. I think I might have finally caught up to my mental age (a screamy baby and no sleep, like ever, makes you feel much older than seventeen) and I think twenty three suits me.

Amy also did Nathan a drawing.

On his back.

When he refused to wake up.

It’s a parrot. You can see it’s beak to the right and the eye at the top (including a pupil). And then it’s “all curled up” according to Amy. Made me laugh anyway.

And, I tried to take a photo of myself, for a record of how I looked at twenty three. But the camera wouldn’t play nicely, so this is the best you get:

I didn’t realise how weird my hands looked until I checked the photo out on the computer. But you know what? That’s actually a pretty accurate representation of me lately.

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Let’s talk about my broken reproductive system

by Veronica on September 23, 2011

in My body is broken.

It’s no secret that I want a third baby, that I’ve wanted a third baby since Isaac was a baby still. It’s also no secret that in that time, I’ve not been pregnant, despite no birth control.

My children are flukes. Conceived within a month of coming off the pill, both of them (with Amy because I was sick of being unwell, so stopped the pill, with Isaac because I’d bled for 6 weeks and they popped me on the pill to stop the bleeding) and we managed to time everything perfectly. Long time readers know this already.

Of course, it wasn’t until earlier this year that we discovered I have PCOS, which is why the pill actually helped with the conception (go figure, also, fuck you to the Gyn who suggested there was nothing wrong with me, it was all in my head* and there was NOTHING SUSPICIOUS about my conception history), but never mind that. Also suspected: Endometriosis, but we haven’t done a laproscopy to confirm, because of the Ehlers Danlos and unecessary operations thing. Go home and suck it up, buttercup.

I’m not sure what my chances of conceiving naturally are. I’m not sure I want to ask anyone, because numbers obsess me and the last thing my brain needs right now are more obsessions. I know that conceiving Isaac took 16 months of TTC and tears. I used to have a TTC category even, but it got amalgamated in a blog redesign.

All of this is to say, I just went through my two week wait. My two week wait that actually lasted 45 days, forty five very long days, with untold negative pregnancy tests and lots of complaining. What normal person has a 60 day cycle?

I DO.

APPARENTLY.

It doesn’t change the fact that I want another baby. It just changes the fact that the chances of me conceiving one naturally are pretty slim.

This is where my gynecologist comes in.

Conceiving another baby should always come with a side of ultrasound wands and ovary stimulating hormones.

I’ve got an appointment on the 5th of October. The idea is to get a script for Clomid and then see what happens.

I ummed and ahhhed over telling you this, Internet. You see, you tend to have opinions about people having babies and when they should have them and how many they should have and how they should definitely not have any more children once they’re past the point where YOU deem that YOU would stop.

(It’s just SELFISH, is what it is, these people daring to have BABIES in a way that I don’t think is APPROPRIATE.)

(Let me stop you there, before my eyes implode and I call you names that I really shouldn’t.)

(Really, you need to stop having opinions about my life.)

But, Internet, you’re not me and I want another baby.

Having a broken reproductive system doesn’t stop the wanting.

So I’m sharing this with you, because honestly, not sharing it has probably contributed to the insanity that I have been feeling lately. It seems that not writing things out is bad for my head. Whoa, newsflash.

Hopefully this ends up being easy. Hopefully the Universe smiles down upon us and grants us an easy pregnancy, with a happy smiling baby at the end.

Sure, it would be the only time the Universe has chosen not to fuck with us, but hey, a girl can live in hope.

 *I think that there is something written on my forehead in ink that only doctors can read saying: Case too complicated, obviously is making it all up, send her home with NO HELP. ABORT MISSION. NO ONE CAN SAVE YOU NOW. But maybe I’m overreacting. I’ve got a lot of issues.

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