Sunday, December 04, 2005

Migraneur's Bill of Rights

It's so important that we know these "rights" by heart and BELIEVE THEM! Because, when we can have these truths cemented in our minds, we can hold our heads high, no matter what situation we're in and command the respect that we deserve, and need. Also, I think it will take the apology out of our voices when we have to tell someone, "No, I can't make it to that event right now," or "I wish I could help you out with that project, but I've got as much as I can handle on my own plate, right now."

I was thinking about how if I walked around with my head shaved bald and wearing a hat, I'd get a whole different reaction from other people than I do now. If part of Migraine Disease was losing my hair, you can be sure that I'd get allot of attention and empathy for it. People wouldn't be telling me what I "should" be doing, i.e. you should be working form home, you should be doing housework, you should be doing all the shopping and errands, etc. I wouldn't hear, "you should be's". I'd be hearing, "is there something that I can do for you's?"

The biggest problem with this disease is that it's invisible to everyone but me. To me, it's more real than the chair I'm sitting on. Even on good days, I can't completely enjoy the good feelings, because I know that in the shadow is the dark Monster, ready to pounce at its perverted whim. So, my gift to my fellow-migraneurs this year is permission to say, "I'm important. I come first." Because if Mama ain't happy, ain't nobody happy.

From American Council for Headache Education (ACHE)

I have a right to...
1. I have a right to be taken seriously by my physician when I go for treatment of my headaches.

2. I have a right to complete and thorough medical examination, including a medical history and complete neurological evaluation.

3. I have a right to appropriate diagnostic testing, including neuro-diagnostics, CT scans and MRI scans, if necessary, when my headache is first evaluated, and when the headache pattern or severity changes.

4. I have the right to be referred to a specialist - for example, a neurologist, a headache specialist, or a headache clinic if my headaches do not respond to my primary physician's treatment, or if my primary physician feels a specialist's care is needed.

5. I have the right to receive specific headache therapy, if needed, instead of non-prescription drugs, narcotics, or combination analgesics that may increase the problem.

6. I have the right to ask for a comprehensive, written treatment plan that will tell me exactly how to use my preventive medications and non-drug preventives and, complete instructions on what to do when a headache occurs.

7. I have the right to return for additional help whenever my treatment plan seems to be inadequate to control my headache.

8. I have the right to be treated courteously and responsibly in emergency room, if a severe headache fails to respond to my usual treatment plan.

9. I have the right to expect my insurance company to recognize migraine as a legitimate medical illness as any other illness such as diabetes, arthritis, etc.

10. I have the right to expect those around me - family, friends, co-workers, and others who come in contact with me to make an effort to understand my illness and to cooperate with me in my efforts to live a full, rich life.


At 12:54 PM, Blogger Angel said...

Oh how I wish my neuro would pay attention to #7!!

Thank you so very much for posting this. I'm sorry that you have to deal with this :(

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At 3:26 PM, Blogger Colin said...

I'd add another -- you have the right to Social Security Disability, Income assistance and Medicare. I don't know what your situation is with respect to that subject, but it sure sounds to me that you should be eligible.

At 7:21 PM, Blogger Kim said...

I'm a little late to this posting, but I agree with Colin. Everyone has paid for the security of having these benefits when we need them. If you havn't taken advantage of them, you should look into them.

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