What I See From Where I've Been - IH Awareness Month - Day 29

What I see...from where I've been from my CUT Project Post (updated from 2015)

A lot of us come from a place of frustration. On top of dealing with this, we deal with misinformation and non-information in medicine. If you are lucky enough to be in a place where everyone is knowledgeable about it, I want to move there!

First let me say, I live in an amazing medical city! In my city is the home base of The Cleveland Clinic and University Hospitals of Cleveland. UH is teaching the next generation of doctors and yet I walk in and most of them have to have an explanation of what to even look up when I walk in a room. I have no delusion of every medical professional I meet understanding exactly my Intracranial Hypertension, but I would like more than a paragraph or two once upon a time.

I've been told that before...a paragraph or two, once in a medical book. It takes 20 minutes of explaining IH before they remember reading about Pseudotumor Cerebri (PTC) once upon a time in a textbook. This disease is not part of some fairy tale...it's a very real part of my life.

It was 10 long years of being told I should be better and it was fine or I had headaches that couldn't be treated and I should live with them before I was given my first lumbar puncture. It took me 7 years to be diagnosed since the first time someone mentioned PTC to me because I didn't fit the picture perfect mold of what they thought it should be for the doctors that thought it might be.

Then I got diagnosed...by accident. I had an abnormal eye pressure test that was followed up by a normal one. I was given a visual field test to update my file and on that day is when the pieces started falling into place for a diagnosis. 10 long years of symptoms and one random doctor found a problem.

But my excitement at having been diagnosed was soon destroyed by medication after medication that didn't help. Lumbar punctures that only worked for a tiny amount of time and then caused other issues for me. I am now on day 1,496 of constant head pain. I have had many medications and combinations of medications. I am not a candidate for surgery yet because they say I am not bad enough yet. I can't get another opinion because to get the consults, I have to have a referral and the doctors say I'm fine for now.

I am frustrated that every single month for the past year and a half, I have seen at least one post (if not more) of an IH friend or acquaintance that has passed. Some have had medical complications and some couldn't take the frustration anymore. They didn't see the light at the end of the tunnel.

We have a chance to be that light for ourselves and others.

We have a chance to take a stand and say we will no longer take the excuse that doctors don't understand it or are unsure of what to do.

We have the chance to make our mark and push for more funding for research and more researchers.

We have a chance to make sure that people are being diagnosed and not tossed aside or made to feel that they "should be okay now."

So that's why I'm here.

Denise

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