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Wednesday, January 9, 2013

I'm no Melanie Wilkes

<p>Do you remember Melanie Wilkes from Gone With the Wind? She was so sweet, forgiving,&; and thankful for everything. When she was giving birth and Atlanta was burning down around her she didn't want to be a bother.  When she was dying she kept on about poor Scarlet having to take care of her all the time. I always wanted be like her.<br>
Yeah well, as it turns out, that is not me.</p>
<p>I'm a big believer in speaking up for myself when I don't feel well. I wasn't always great at that though.&nbsp;&nbsp; Early on in the first several years of my diagnosis I wouldn't call the doctor right away even though I wasn't able to walk.&nbsp; If I was experiencing fatigue so severe I was sleeping 16 hours a day I would just blow it off as being tired.&nbsp; I had the notion that this stuff would go away and my doctors had more important patients.&nbsp;&nbsp; I didn't want to be a bother.&nbsp; If I did make the attempt to call I would always have to leave a message and wait for the nurse to call me back.&nbsp; Sometimes I would wait a whole day for a return call, but instead of making a second call I would wait. They were busy I didn't want to be a bother.  Instead of letting my doctors office know what I needed, I just assumed they knew and would take of it for me. I was wrong.

I have had some pretty crappy experiences in the past with various doctors.  Some were my fault for not being clear enough about my symptoms.   Now when I call my doctor's office I leave a message explaining in detail my symptoms, how long I have been experiencing them and if I am willing to come in for infusions or not. When I am in the office for my check ups I answer honestly about how I am really feeling.  If I have been crying three days a week for the last three months I'm not embarrassed tell him.  He can determine if it's a side effect of the disease controlling medication I'm taking or something else. I lay it all on the line about every tingle, numb toe, stumble, verbal bumble and fall.  It's not a bother it's his job and he wants to do it well.

Some were where the office drops the ball.  I have had to learn over the years it is not acceptable to wait more than 24hrs for a return phone call.
It's not acceptable to "wait it out" for a week, like I've been told before.  It's not acceptable to be told my symptoms are really not as severe as I make them out to be.  Those are just a few examples from past doctor offices.
I would like to add a thing or two about insurance companies.  If they deny a service, medication or even a doctor you have the right to appeal.  Do it.  I have and been able to get them to concede to many of the things I needed.  For instance, my neurologist is not on the list of their proffered providers, in addition,  the only hospital he visits is the one attached to the medical college where he teaches and practices.  I have been able to get the insurance company to cover the hospital visits and out patient services, and I pay a small out of pocket fee to my neurologist.

I have learned to stand up for myself and demand the best care I can for myself.  The more I think about Melanie Wilkes the more I see she was a strong woman in her beliefs. In the end she died with dignity and the love of her family that she was so fiercely loyal to. And, she didn't let Scarlet take her man!  That's the kind of Melanie Wilkes I strive to be.

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