Tags » IIH

My Experiences of IIH

This post is proving really hard for me to write. I wanted to write about my experiences over the last couple of months as I’m getting asked a lot of questions about my condition and what I’ve been through, so here goes… 2,372 more words

Knowing they care is hard.

It’s hard being on disability. It feels like everyone around me has this piece of their life that I can’t really be a part of. In place of a job, I have pain management, medications, doctors appointments and trying to shower. 481 more words


Doctors, Pain, Self Advocacy.

I had every intention of talking about the need to be assertive when dealing with doctors for this post. Please note, I did not say… 570 more words


"In rare cases..."

I always get those symptoms on medications… “in rare cases.”  They don’t feel so rare. I also seem to win those undesirable lotteries with diagnoses. 699 more words


The Beginning...

It all started around February of 2016…. terrible headaches which would cause me to double up in pain and be bed bound.

At first I was naive thinking it was stress or my vision needed testing, I left it a while to see if it would settle down, only it got worse. 416 more words

On Rare Disease Day, I Am Thankful

Among several other things, today, February 28, is Rare Disease Day. This one hits kind of close to home for me, as I was diagnosed in 2009 with idiopathic intracranial hypertension (IIH), sometimes also known as pseudotumor cerebri (PTC). 150 more words


First time blogger...

Here I am….this is me. A first time blogger and a long time reader. 

I’m not sure as of yet of the direction i am heading with this blog but i know what my interests are and what I have to offer. 183 more words