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Feeling Like the Smelly Girl on the Playground

Nov 25

Posted by: ACHA
11/25/2013 2:53 PM  RssIcon

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.

Ellen Jenny Greenberg is from New York, where she also currently resides. A child life specialist, Ellen has had five open heart surgeries and is obtaining a Masters Degree in Early Childhood/Early Child Special Education. Her congenital heart defects include transposition of the great arteries, ventricular septal defect, atrial septal defect, tricuspid atresia and single ventricle. Ellen sings cabaret regularly and hopes to sing, write and speak for the CHD cause as her journey in life continues.

Copyright ©2013 ACHA

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Location: Blogs Parent Separator ACHA Blog

6 comment(s) so far...


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Re: Feeling Like the Smelly Girl on the Playground

Hi I have the same heart disease apart from I also have Eisnmengers syndrome. I know how you feel, had to go 3 different hospitals to find a surgeon that was willing to remove a body tumour from my neck. I only had local anesthetic so therefore I was awake, this is the second procedure I have had under local. I have side effect from drugs but doctors say sorry you have to live with it because we can't give you the drugs that will help. I sometimes feel extremely frustrated too. I feel that I frustrate my consultant when I tell him I don't feel great. Hope you keep as well as possible

By Donna Stevens on   11/26/2013 9:01 AM
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Re: Feeling Like the Smelly Girl on the Playground

I was born with TOF and had corrective surgery 51 years ago. I've been through the exact same problems. I was refused a Gyn procedure I needed, an oral surgeon wouldn't put me out to pull out my impacted wisdom teeth, another oral surgeon hooked me up to a blood pressure cuff and an EKG machine, and an ENT doctor told me I didn't need to have a polyp removed from my nose because I've had enough surgery. They see us as a law suit waiting to happen. I worry what would happen in the event of a medical emergency if doctors are afraid to work on me.

By Janet Haffner on   11/26/2013 9:01 AM
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Re: Feeling Like the Smelly Girl on the Playground

You go, girl!
I've received the same treatment - or shall I say lack of treatment.
I wrote the doctors a letter and bluntly told them that I didn't appreciate the way I was treated. Never heard back from any of them, but got the problems out of my system.
Headaches are a bummer. I've had a gigantic one for two hours now.
Guess I'll have to give in to 1 or 2 Tylenols.
Keep persisting!
Connie

By Connie on   11/26/2013 9:01 AM
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Re: Feeling Like the Smelly Girl on the Playground

Ellen,
I hope you remember me. Christina, from Schneider Childrens Hospital. The PICU nurse that was just starting as you were just getting diagnosed. You were asking me about my scar, and my surgery. I was on this website and stumbled across a blog by a girl named Ellen--and I thought, without seeing your picture, "wow, I wonder if this is the Ellen I knew". Clicked on it, and there you are!!
I think about you often, and always wondered about how you are doing. Please email me back and reach out if you'd like to catch up. I hope things get easier for you, and keep fighting :)

By Christina on   12/3/2013 10:05 AM
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Re: Feeling Like the Smelly Girl on the Playground

Hi Christina how are you? I remember that it was shortly before my Fontan revision. Feel free to reach out to me on here or Facebook. My name there is Ellen Jenny. Email is ellenjgreenberg@gmail.com

I hope you are well!!

Ellen

By Ellen Greenberg on   12/19/2013 12:29 PM
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Re: Feeling Like the Smelly Girl on the Playground

Another approach is to consider; "Is this doctor good enough to treat me?" I've had the same experience of MD's being too cautious, even in large teaching hospitals. When this happens I ask (demand) to see the MD with the highest rank in their specialty, whether it's gyn, surgical, or whatever. If they're afraid to treat me, I don't want them either!

With conditions like ours, we deserve and need only the best. According to my mother, I've been demanding of the doctors and other medical people since I was very young. It's gotten me this far!

By Laura on   12/21/2013 8:00 PM

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