Be Very Very Quiet, I’m Hiding

photo-1422190441165-ec2956dc9eccNot hunting rabbits.


As I mentioned earlier, the intake appointments are complete and now the therapy actually starts. This Thursday. Morning. First thing.

Cause sleep is for the weak.


When I was at Red Hat Summit in June one of the most exciting projects I learned about was the Open Patient project which is about accessing your own medical records and then, if you’re feeling particularly brave, sharing it with others so that as many medical practitioners can help as well as offering help to others who may have a similar diagnosis.

Actually, there’s a whole series of Open Source Stories about projects outside of software that are using the open source way to solve problems.

Now, I don’t have brain cancer. Which is what most people involved in the open cure advocates have or are fighting.


I want to share this healing process with you.

What I have is not incurable. Sort of. Because I can never un-experience the original trauma. But I can be as stable as possible. And learn coping strategies. And share the process with you because maybe you’ve experienced a trauma or know someone who has and this gives you a little light at the end of the tunnel.

You’ll be okay.

I promise.

Just keep swimming.

In the meantime, I have full access to my medical records here in the Netherlands. In Dutch.

Of course.

I’ve asked the therapist to talk to her colleagues about how they feel about me posting their notes online, though, because I would like to know if people feel this is a violation of their privacy. The main person who will treat me is fine with it, but other people will also have notes within my records and since I’ll be translating anyway, I could edit names if people are uncomfortable.

I realize they’re MY RECORDS and it’s MY RIGHT and all that stuff, but I still respect their choice to request slight editing.

In the meantime, even though I have a diagnosis, it’s not online yet. So even though I have access to those records, it’s only as dynamic as the doctor updating said records from their hand written notes. #damnit

But I was SHOWN my diagnosis on Friday which was written in Dutch and I didn’t ask for a translation, I just guessed – it’s something like relapsed PTSD. Or recurring PTSD. Or recursive PTSD.

I’ll let you know when I know.

Otherwise, I’m hiding. Cause while it’s super easy to type and post and such, I don’t want to talk about this face to face or over the phone. If you send words of support, those are kickass awesome, but I hide from discussion.

At most all I can manage is a thank you.

And then a quick change of subject.


But I see your messages.

I promise.

Thank you.

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