Being a better Advocate – updated

little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.


4 thoughts on “Being a better Advocate – updated

  1. Thanks for stopping by my blog site. I know what you mean about not being honest with yourself, been there done that.:(

    I have been staying in bed longer in the morning, moving slowly and not feeling real energized. We have to motivate ourselves and unfortunately have bodies that do not want to cooperate with us. My spirit and mind may be motivated, but my body does not want to cooperate or vice versa.

    Hang in there!


    1. Viv,
      I know exactly what you mean. It’s hard when my body doesn’t want to cooperate. This week I’ve really been wanting to get in my studio, and create. But my body won’t allow me to be up that long. Saying vertical too long is not a good think lately.

      I hope you feel better soon!! You hang in there too!


  2. I wonder if your stress concerning Stuart’s health could be impacting on your Meniere’s? You probably have already considered that, but I find the more under stress I am, the worse certain of my health issues become.

    Good luck with the appointment; I hope you find some answers to your current health issues.


    1. Phylor, I do think stress can be a major factor. That’s one reason I was so lax about pressing the doctors about my symptoms. But after a month with no relief I decided I needed to make sure it wasn’t more than just stress. thank you. I hope you are doing well. w


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