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Feeling Like the Smelly Girl on the Playground

Monday, November 25, 2013

By Ellen Greenberg

This summer I graduated with my master’s degree. Upon graduation I became extremely sick with migraine headaches. For four months I laid in the dark of my bedroom feeling as if I was literally having open heart surgery on my head.

None of the doctors knew what to do for me. I had a CT scan both with and without contrast. Nothing was found. So the neurologist I had placed me on steroids.

This did not work. I was met with resistance for more steroids when the first round did not work. A headache specialist suggested admitting me for intravenous high dose steroids. The neurologist said “NO,” because “should something happen, her cardiologist would not be there.”

Here I thought, great, finally a suggestion that could help me and I’m being punished because she sees the scar on my chest. Fantastic—a doctor does not want to treat me because, “You’re a complicated case.” Clearly this is a line I have never heard before. I was again being ostracized for having a CHD. All the pain medications, which were not necessarily for migraines, caused horrible side effects, made me addicted, and eventually had me walking into walls in an absolute stupor. All I kept thinking is, why do they keep treating me like I’m the smelly girl on the playground? Why isn’t anyone helping me?

As I had finished my student teaching experiences in two different kindergartens, I actually started to feel like the smelly girl on the playground. I could not keep my eyes open because of the light. I wore my sunglasses indoors and, oh yes, we could sing, “I wear my sunglasses at night.” I would cry out of pain—and when you have a migraine, crying doesn’t help with the pain, but I was in so much pain that it was a relief.

Well, this treatment continued for a few more weeks until I finally received another pack of steroids and a prescription for Botox injections and a long sought-after prescription for physical therapy. Botox and physical therapy seem to be working.

However, I have this lasting feeling that the minute a doctor other than my cardiologist or a CHD cardiologist lays eyes on me, they want absolutely nothing to do with me. It’s as if I’m too scary for them because they do not know how to treat me and they are more worried about covering themselves than the patient in pain so it is better to pass the buck. This is a horrible feeling and an unfortunate way that I had to be reminded of this and be in pain from migraines for approximately four months.

I will never give up, as I find this harder than being a CHD patient in the first place. So I say—fight any way you can.

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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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