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.