the fertility advocate

Talking, writing, educating, and change making in the field of fertility for more than twenty years

The Vulnerbility of Being a Patient: The Importance of Having an Advocate

It was one of those days that one does not think about very much. My husband and I got up early. I had to go have root canal – and I have been needing to face the fact that I need reading glasses. Turning 50 is a bitch. Everything seems to be shifting… I had put off getting reading glasses for about six months – and that day I decided was the day, before my root canal.

So off we went to the eye doctor. After I went through reading the letters and numbers off the wall – he started to peer into my eyes with lights. All of a sudden – the tenor of the exam changed. Dr Eyes started to ask me all kinds of questions about headaches, seeing lights, and my hyper-tension. I started to get nervous. He said he wanted to dilate my eyes – that there was something not right that he wanted to look at more. I almost wet my pants. He was scaring me. After the dilation, and lots more eye test that involved me  following directions – the ophthalmologist told me that he thought that I had swollen optic nerves behind both of my eyes. This is not a good thing. Before I could say Hostess Twinkie – I was hustled off into our car and we were headed to the emergency room of NYC’s Eye and Ear Infirmary. . This was so not the plan for the day! Not that root canal was a big fun time either – but I still couldn’t wrap my mind around the fact that I was being sent to the emergency room.
As emergency rooms go – this one was not bad. And once they knew why I was there – I was put on the top of the list. I didn’t find this comforting. Before I knew it – I was hustled into an exam room and once again drops were put in my eyes  while I was poked, asked to read letters, and had all sorts of things blown into my eyes.
I know that you can’t stand the suspense – so I will skip ahead a few hours – and three doctors. The bottom line is that I have fluid on my brain. Or around it. Actually we all do – mine is just not draining very well.  It’s an in go – out go system. And mine is a little plugged up.
This is putting pressure on my optic nerves which is why they were inflamed when the doctor looked into my eyes for the routine eye exam. This led to an MRI and Spinal Tap to rule out a brain tumor and to check on the pressure on my brain.
Yes – I was a little more than a little freaked out. The good news is that I have the diagnosis of choice – which is a non tumor in my brain – but fluid of unknown causes – this is very treatable. The risk is blindness if it goes untreated – but right now I am in the very beginning stages of this diagnosis. My eye sight is unchanged – only normal eye sight loss of a 50 year old woman.  I have no symptoms and  this is reversible! I can heal. This can all go away. I really want to go with that. But laying there in the MRI – and baring my back for the spinal tap was terrifying. The unknown was terrifying.  I had forgotten what it is deep down inside – not to known what your out come is.
I thought I remembered from my days of being an infertility patient. But I had  forgotten  the deep, hot pain. It becomes a memory. I kept thinking that I needed an advocate for me in the system – just like my fertility coaching clients get from me.  It was in that moment that I was reminded how badly patients need a team around them to sheppard them through the system. I didn’t know how to find the right doctors – or if I was even in the right place.  So I began to reach out to my friends who knew something about eyes.  I got lucky. One of my best friends happened to be related to some big wigs  – and they literally showed up to take care of me.  I was connected to the right doctors – and just knowing that I now had an advocate on my side helped me relax into the rigors of what was before me.
It is incredibly hard to be a patient.  It’s not weak to get support. Actually – it’s the smartest thing anyone can do for themselves.
What I have learned from my years of being a patient advocate is that building your team to help guide you through the system is the smartest thing anyone can do for themselves.  I don’t care if it is IVF or cancer – you need an advocate!  I am so glad that I outreached – and got someone on my side.
About Pam Madsen
Talking, writing, educating and change making in the field of fertility for more than twenty years
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Talking, writing, educating, and change making in the field of fertility for more than twenty years

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