Ever since the beginning of this, people have been telling me to write. A book, a memoir, an autobiography, but that seems like so much work. It seems pretentious. I’m not the sort of world-changing individual who should be immortalized in that manner.
What I am is a person with an incredibly rare variation of an incredibly rare disease, and THAT, I believe, does deserve documentation – but on the internet, where anybody may find it. If somebody going through what I’ve been through finds this blog and it helps them, then that’s the good I’ve done in the world.
So let’s get started.
I want to preface this by saying that I’m not going to use the real names of my relatives, friends, or doctors involved For Reasons. If you want the names of doctors please feel free to contact me and I’d be happy to share, but for the time being I enjoy the small amount of anonymity that the internet offers.
So, back to the very beginning.
Once upon a time I was an egg. Then the egg became fertilized, and things went generally downhill from there.
An Arteriovenous Malformation is a congenital birth defect. That is to say that it happens in the womb. My embryo didn’t know how to do veins, and so it messed up a little. It’s okay. Mistakes happen.
Specifically, what happens with an AVM is that there is a spot where your veins connect to your arteries, and these areas usually have capillaries. Your capillaries serve as something like a mudroom between the artery and the vein. Your blood chills out for a bit in there before moving on. An AVM occurs when your body has decided that, eh, that spot didn’t really NEED capillaries. Except it did, and now look at you. You’ve got this ticking time bomb somewhere in your body.
That ‘somewhere’ is, the majority of the time, in the brain. See, this is where things get particularly scary for those of us who don’t have the typical brain AVM. Our doctor tells us we have an AVM and we go home and google AVMs and we read about brain hemorrhages and strokes and instantaneous death, not knowing that that’s not what will happen to us.
What happens to us is often far more complicated.
AVMs can occur anywhere that you have veins. Plenty of people go through their life never knowing they’ve had an AVM because it was somewhere weird and never became symptomatic. Now, my AVM was/is (I will explain that later) both within my skull and outside of it. It started out looking like a birthmark, as most extremity AVMs do.
I would like to take a moment here to say that if your baby has been born with an unusual birthmark and your pediatrician has told you not to worry: Demand tests. It is very often just a birthmark, but sometimes it’s not, and you are better safe than sorry.
My mother asked my pediatrician about my birthmark, which became more apparent as puberty set in – this is an important fact, hormones often cause AVM growth – and was told she was worrying for nothing. My mother did not push for testing, and for oh, seven years, things were fine.
At the age of seventeen (and after very much research), I asked to get a Mirena IUD. It is a type of hormonal contraceptive placed inside the uterus and it lasts for five years. I want to be clear here before I go on – I, in no way, blame the IUD for my AVM. It was already there. It was already going to become a problem.
The hormones from the IUD caused the AVM to gradually grow, and after seeing multiple doctors, I received my diagnosis at the age of 20, on October 13 of 2010.
I will end this post here. If you’re reading this, thanks for staying with me. š
On the other side of the scar... 