Monday, August 24, 2009

Ego Over A Miracle....What Would Jesus Do???

So, I got to thinking. If Jesus were alive today and He had the opportunity to heal those with IIH ....BUT...the catch was He had to do it secretly and couldn't take credit for it....would He still do it?

Well, of course He would. That was what was so spectacular about Jesus Christ. He came to us minus an ego.

Doctors are healers. They go to school for a long time to learn how to heal people. I currently see an "IIH Specialist" here in Rochester, NY whose job it is to know how to properly treat those with IIH....albeit, current treatments are insufficient and much research is needed.

As I have mentioned in my earlier post; I cannot idly sit by in pain, with friends in pain, and do nothing. Therefore, I have decided to try and organize a fundraiser for IIH research. So, imagine my enthusiasm when I went to see my specialist this afternoon for my two month checkup.

After my appointment, I told her of how deeply it pains me that the medications don't seem to be working for me and many others. How I realize that a surgical shunt may not be too far off in my future and the idea frightens me terribly because I know that the procedure is not sound. I expressed my deep concern for the way IIH patients are treated so poorly in emergency rooms and hospitals across the country by medical personnel who know little about our pain and this illness. I told her that "the treatments being used today are the same treatments used 100 years ago and much research is needed." And, I told her that "it is not in my nature to sit by and take this lying down...I have to fight. God gave me this ailment for a reason. I want to make a difference, no matter how small that may be."

I said, "I want to start a fundraiser here in Rochester, NY for IIH research."

She said, "And who would these funds go to? Who would be doing the research?"

I said, "The Intracranial Hypertension Research Foundation."

She said, "Well, you can count me out. I won't participate in a fundraiser for someone else's research!"

Me: (Taking a moment to absorb the shock)

I said, "Um, okay....why not? This is not someone else's research. This is research for IIH. My disease. Your work. Why would you not fund that?"

....Now, let me interject here and say that there can only be one reason. EGO! This is a simple case of a "Big Fish in a Small Pond" syndrome. My doctor is the same one that told me not to go to the ER at OSU hospital while visiting family in Columbus, OH. She said that "it's the worst place you could go for this." Nonetheless....I went to OSU....and I was so glad I did!!! Unlike many other hospitals across the country they knew what IIH was and moreover had protocols in place for the staff on how to treat it!!!! It was like heaven for people with IIH. I suppose my "specialist's" ego has gotten the best of her.....and may be getting the best of me.

....I digress.

So, she said: "Well, I used to be on the board of the Intracranial Research Foundation and I just wouldn't fund research there." (No specific reason given)

I said, "Okay, well my goal here is to make the most progress toward a cure. If you have better ideas of where the funds could better be used I'd be up for any suggestions. Are you suggesting that you are doing research here?"

She said, "Well, we have a grant for research, but we aren't currently doing any research."

(Long Stupid Pause)

Me: "Ummmm.....Okay......Well, when you do start research what will your research be on?"

She said, "We will be doing research on headaches and how they affect daily living."


She suggested that I do a fundraiser for the National Neuro-Opthalmology Board earmarking the money for IIH research, as the N/O Board issues research grants each year. But, I only think she finally made this suggestion after I continually pressed her for an explanation. The bottom line was....She would not participate in helping with a fundraiser to finding a cure for IIH.
And this is my doctor!!!

I guess I better start praying for some miracles!


  1. Incredible!

    I think this just furthers my theory that the reason the specialist types treat IIH patients so badly is out of their own personal issues. Ego and Insecurity. I want to Be Right and Look Good.

    I want to put my money to the people who are trying to look for answers. You don't need money to know how my headaches affects my daily life, cause I live it... I need a cure. IHRF is working on an animal model to get me a drug that works... will her research on daily living do that?

    Sorry, I'm all riled up on your, and everyone's belhalf.

  2. Yep...this really makes me want to travel the 7 hours everytime I get ill to go to OSU for treatment. I would much rather be treated by someone who truly cares about my illness and less about their paycheck.