Thursday, August 2, 2018

Hoovering all of the information

I've read biographies and seen documentaries of people who have had a really awful thing happen to them and in the aftermath they consume all of the information on that specific topic they can find. I fully understand that need now. Since having an Amniotic Fluid Embolism I have this unanswered need to know why. Why me? Why with my fourth birth and not my other three? Could I have prevented it? Is there something wrong with me that was a catalyst for that? The long story short is that I couldn't have prevented it, nobody knows why it happens, and it's next to impossible to test because they haven't been able to recreate an AFE in lab animals and there aren't predicting factors for them to essentially watch it happen in a woman.

So it's all very frustrating.

It also makes it scary.

I know that right after my AFE I really poured over the AFE Foundation's website for information and survivor stories. It was actually terrifying and I could only do it in little bits because I would panic and cry. I was in actual denial that this had even happened to me and despite everyone telling me the story over and over again, it's really terrifying to admit that this has happened to you. Honestly I don't know if there is anything more terrifying to be told this is wrong with you and we don't know why. Cancers and other illnesses you can blame on environmental or genetic causes but AFE is kind of in the wind. Nobody knows and it makes me worry that I am susceptible to something else that I just don't know about. Is something more coming for me? Was this the Pandora Box of other things? It's a scary place to be in.

But being two years out I'm getting better at absorbing information and not feeling like doomsday is coming for me. It's still painful to hear, sometimes I cry, sometimes I need to take a break from it, and sometimes I grieve my story all over again.

But I'm trying.

I'm writing my book and that requires me to research and learn, which is harder to do now and my brain doesn't process information like it once could, so sometimes I don't understand what it is I'm reading. But I stumbled across a podcast, literally the only one out in Podcast Land that I could find, on AFE. I thought maybe I'd share it with you in case you were interested in hearing about AFE from someone other than me. They are relatively short (like 20 minutes) and I listed to them on a recent walk.

Episode 020: Amniotic Fluid Embolism, pathophysiology

After listening to these I had to find the doctor speaking in these, Nolan McDonnell, and just tell him that I'm survivor, I listened, and I thank him for his work. He's doing big things with AFE research and expansion of a registry in Australia and my hope is one day the United States will have a similar medical system like Australia and the U.K. so we too can have something like this.

My next topic is looking for resources and information on birth trauma related depression and birth trauma related PTSD, both of which aren't overwhelmingly plentiful so it should be interesting. Do you know of a resource? Drop it in the comments and I'll check it out!


Anna said...

This is on Saturday, but she has future sessions coming up as well. Perhaps it could be helpful?

Shooting Stars Mag said...

That's awesome you found that podcast; I hope more research and information will be available in the U.S. too! It must be scary to have something and nobody knows WHY or really how to care for it properly. I'm glad that reading about it is getting better, but I'm sure you'll always grieve, or feel overwhelmed at times, and that's okay. If I find any resources, I'll send them your way!


Shooting Stars Mag said...

p.s. it's a UK site, but there's a Birth Trauma Association:


Anonymous said...

Yikes! That's super scary, but I'm so glad you found that podcast. Hopefully, you'll be able to find some more resources.

Deborah said...

It's Australian, but this is a website with birth trauma information that might hopefully be some use to you: