“Pulling My Hair Out!”

The EXCRUCIATING wait for new prescription glasses….


Axon Optics- “Pulling My Hair Out!”

Somehow…. My blog entire post went here, so click on this link!


by Lori Raines, Founder of Neuronauts Dystonia Awareness and Advocacy Nonprofit Organization. To learn more about Dystonia, please visit their website here.

FL-41 glasses help blepharospasm and dystonia

I KNEW I needed prescription glasses…. Again! The “amazing” Lasik surgery I had in 2007, almost three years before I developed blepharospasm and the sudden onset of a neuromuscular disorder called dystonia, went completely down the drain.

I need to back up this story a bit though, I am about to get ahead of myself. As the symptoms of dystonia progressed, like the horrors of bright store lights on my nervous system, migraines from intense muscle spasms from my back to my neck to behind my eyeballs, and worse for me, computer glare, I needed some relief! I had started a support group on Facebook for all movement disorders called Neuronauts and quickly knew I couldn’t be on the computer as much as I was because my eyes were screaming at me for help! Red, puffy, scratchy, twitching, watering eyes and administering a growing group was awful…And then I saw Axon Optics on Facebook too.. My eyes were begging me to find out everything I could about this therapeutic “super tint” in the FL-41 Glasses.

Axon Optics review FL-41 Transition lenses

When the magical Axon Optics FL-41 Transition lenses with Anti-Glare Anti-Smudge coating glasses arrived, they never left my face. I wore them the second I opened my eyes until I had to close them. I loved them and everything I had read and had been answered was true! I told everyone who suffered from the same issues as I did and more. Then it happened. It seemed I went back to being blind as a bat overnight. As much as I loved my glasses, they didn’t help me see five feet away or farther. I couldn’t believe it.

I found way too strong prescription glasses from a thrift shop just to drive and see signs and not be a danger to society! They are awful and make my brain hurt. And my HAIR! I had to get to my eye doc quickly! My optometrist is three hours away from where I live now. I finally had my appointment last week. It was a long drive but found out it was true, I needed new glasses.

I saw THE frames there. I tried them on and they fit great, but they were $240! I can always find them at least half price online being savvy with Google and I did! Because I KNEW I only wanted Axon transition lenses and I knew about the “Send in Your Frame” option already, (I was going to use the ones I already have but these have more coverage for a prescription and are classic cat eye style and just…cool!) I am starting to feel super excited and smart. I sent in my script to Axon, I ordered the new frames off the internet, I’m making this thing happen and the thrift store glasses will be history! My eyes won’t HURT anymore! Feel the momentum?

Then….The email….Virginia at Axon Optics writes: “What’s your PD?” (Pupillary Distance)

FL-41 glasses can reduce blepharospasm symptoms

I said,”I don’t know. I’ll call my eye Dr. now!” Well, they don’t measure that UNLESS the frames are bought AT THEIR OFFICE. (The distance between both pupils is kind of important info for me since I had lazy eye as a baby and I am now almost banned from interstate driving, as my eyes close and cross and I’m never in an actual lane at times…I am happy Axon requires all measurements to proceed, they want them perfect and so do I.)

So THEN, I need a REFERRAL, to a NEW Dr. here, wait for a new patient appointment, JUST so I can have the “PD” measured and THEN I could get new glasses…

This whole process just went from 3 weeks to 2-3 months. I cried.

I thought why can’t I just hold a ruler on my face and take a picture and count.!..but it doesn’t work that way. I asked this question in the support group and one of the members sent me this picture of a ruler and said “Here!”.

Then…in my total disappointment, I had a smart moment! I called my eye office and asked, “What was my PD with my last pair of reading glasses I got a couple of years ago? (The PD doesn’t really change! ) She put me on hold and came back with the measurement I needed! In a split moment, the 3 weeks to 3 months went to 3 weeks again! I am waiting right now for the internet frames to arrive so I can send them in. It’s excruciating. I want to pull my hair out, but with bad glasses on top of my head half the time, it’s already happening.

I am SO CLOSE to HAPPY and having exactly what I need, want, match “my style” AND have the

Axon Optics FL-41 MAGIC back!


The 3 Weeks I Couldn’t Write – An In Between Post

This is an in-between post. In between my last blog post and the one I have been working on for 3 weeks in my head and haven’t been able to write. And it makes me mad. It also makes me mad because I know it will happen again. And again…But that’s a good thing, because the one I’ve been trying to write is about anger and the last 3 weeks were so horrible (with one amazing exception) that I couldn’t physically write the “real” one I’m working on now, so it keeps it all relevant! That’s my silver lining in the whole blog writing matter except I won’t be able to keep using this title every three months when my body gets in my way, needing those needles.

So many things and events have occurred that I couldn’t spin into interest for anyone. I refused to torture people with myself in the worst mood and sky high pain levels, making me incapable of sitting, typing, thinking, much less formulating actual words. I’ve had one of three cervical epidurals, frozen water pipes, locked keys and a shih tzu in the “new” car AGAIN (yes, there was another time in that span and I did order one of those hide a key things but I didn’t just write that and no one would find where I put it anyway) the very SAME day at the end (I thought) of a seven hour round trip for cervical dystonia Dysport injections, trying to skirt an impending snow storm but inadvertently causing my dog to get pancreatitis which meant a trip to the doggie ER the next day after the snow AND because I wrote a review for the awesome dude who unlocked my car, got myself into Google+ (plus….plus meaning screwing up ALL my email even worse). There are about 798 OTHER things I don’t even want to begin to think about just for the sake of proving my inability to use my arms to squeeze out even one funny moment, when I suppose there had to be maybe one in three weeks, but I surely can’t think of it at the moment. If I do, I will make a note of it….

I have been so angry with my own disorder dictating my life, while at the same time being completely surprised, honored and proud to no end, as I found out I am a Finalist in two categories for the 4th Annual WEGO Health Advocate Awards! My mind is blown and I am so grateful for the people who nominated and endorsed me, the 64(!) judges who even paid me any attention surrounded by hundreds of amazing health advocates and the fact that I really do care and made a difference in the world and these people I look up to and I don’t even know can feel it, whoa….(Winners announced March 18th). IF I were any “normal” person, I would’ve written a whole post JUST about this, but I couldn’t because my right arm wouldn’t work and it is attached to my neck and it wouldn’t look down. Down is where the keyboard is….and I don’t know how to type without looking because I had to drop out of typing class in high school because of back spasms and couldn’t sit up straight. I made my teacher mad every day and then she felt bad when I was diagnosed with a whole bunch of stuff leaving me in something resembling a straight jacket my whole freshman year. I digress….I was only able to thank Wego on Twitter and make some changes to our website, it felt so inadequate but it’s all I could really do and this too.

I am writing about a subject which has proven to be quite difficult and is challenging my memory, body and my difficulty resolving an emotion I don’t really know how to incorporate into my present life and doesn’t fit into my other more positive and evolved skill set of handling shit. It is not an angry blog, it is a long story about anger and I had to get permission to even write it from my mother because I am using the memories of my childhood to tell a tale most certainly revealing what I have held true for 35 years. In a way, I hope don’t get corrected with facts, I believe in fairy tales and the little kid mind of filling in the gaps when the dots are missing in order to connect.

I am almost finished with the introduction of the next “installment” and I think it’s about as long as this in between post. Its gonna be a LONG one, but it’s flowing faster out of my mind, through my fingers, just as the toxins are starting to flow faster through my physical body, allowing the dam to open…a story of deception and jealousy, of selfishness evolved from inadequacy, a deep look into the past and ending in ashes. Sounds so dark but I’ve smiled so many times already, I think it must be more than about anger.

Maybe the truth will reveal itself in the life of my great aunt, Hala. Hilda (Marie) Frisbee……