Just finished hearing from Dr. Hertle.

Well this live blogging thing is going to be hard. There is so much that I still have to process.

1. It’s freakin emotional to hear even INTEREST about this condition from a doctor. I have always wanted to learn more from my optometrist about the medical background but thought that maybe they just weren’t interested it taking the time to tell me. But really, it looks like most doctors are just really ignorant about it.

2. The little medical knowledge I have of my particular nystagmus is probably wrong. Or at least it was just a best guess by me based on things I had read. And given all of the misinformation there is out there, this is probably not accurate. I am making a mental note to revise the little medical information I have on this blog.

3. I learned a lot more about treatment. Treatment is something that I’ve had mixed feelings about. This was definitely educational, and I will go into more detail about what I learned in a later post.

I think what I really took from listening to Dr. Hertle is that I want to get tested by a specialist.  Not necessarily because I feel that I need a specific treatment, but at least so that I can learn enough to make an educated decision about whether or not I want to receive any sort of treatment. If nothing else, it’s comforting just to be able to fully understand what is happening with my own body, something that I think a lot of optometrists/ophthalmologist don’t really understand.

Maybe that will be my next nystagmus adventure…

I’m eating breakfast in the large group room waiting for the program to start. Dr. Richard Hertle is the keynote speaker at the conference. It seems he is the foremost expert when it comes to nystagmus nowadays.

When I was growing up, Doctors pretty much summed my nystagmus like this: It’s nystagmus, it’s not curable, it probably wont get worse, and it might get better. There’s not much you can do about it.” The end. It seems this has been the experience of a lot of people. I never really had a great medical understanding of what is going on with my eyes, so I’m really interested in what he has to say. Stay tuned…

Hi guys!

It’s been a while since I’ve had the chance to post. Big news…. I got married! Yay! ❤

As you can imagine, the past few months have been pretty insane. Not only was I planning a fairly large event, I also had to find an apartment, move, and attended wedding-related activities like showers and bachelorette parties. And work to pay for the whole shindig. Yikes.

So now that I’ve had a chance to settle in a little bit, I wanted to catch up with you guys. I’ve missed you! Thanks for all the love and support while I have been out and living my amazing life 🙂 Here’s some new things happening in my nystagmus world:

1) I can now post from my phone

This is excellent news because it means I can post even when my life is crazy and I’m never home (which is a lot right now). I can also post pics and videos a lot easier which is pretty cool.

2) I am going to the American Nystagmus Network’s conference in Washington DC

And you should too! It’s from July 22 -24.  They only hold them once every two years, so don’t miss your chance. When I first learned 2 years ago that there was a conference completely dedicated to Nystagmus, I had just missed it and was so disappointed. This will be my first, and I’m very excited. This may or may not seem strange, but I have never in my life come into direct contact with someone else who has nystagmus. I have heard that it can be an emotional experience. I can’t wait. And I’d love to meet my shifty-eyed friends out there, so you should all check it out and try to make it. I will be posting more on this event later, so stay tuned!

Love you all, missed you!

Jo

I’m trying something new here at The Shifty Eyes Blog. I think it looks snazzy! Very sharp, but I also miss having a little bit of color. We’ll see if it lasts. I may switch out the header for something more colorful.

I also want to be mindful of our low-vision friends. So please let me know if this theme makes it more difficult to read. Or if it makes it better. Or if you just plain don’t like it!

xoxo

Jo