Let me set the stage for this blog post. I wrote the bulk of it two years ago on Facebook. My vision loss was still a mystery and GGB did not exist. As I reread it…a myriad of emotions flowed back with every word. My vision loss was getting worse and no one knew what was wrong with me. I was being tested for everything under the sun, and I was hiding the severity of it from most everyone I knew. I didn’t look any different, but, my vision was becoming very different. I wrote the post because I couldn’t hide behind a smile anymore. I copied and pasted that post below. I can’t help but think that perhaps this was the beginnings of GGB coming through. Who knew….
Facebook 9/11/2013 ~ “Ok, Ok, Ok… I’ve been hiding something. You would never guess it just by looking at me. You might want to sit down for a minute…this is kind of a big deal. There IS a reason why I have not been as active on social media or teaching classes. Wait, this will probably take more than a minute… so, get comfortable.
Soooo, you may have noticed that my posts have been focused more on “mental encouragement” and focused less on “fitness & health”. That’s not the usual balance of Facebook postings from me. I have told only close friends & family about what’s going on…. but more & more people are getting concerned about my absence on social media AND why I haven’t been at the local gyms to teach my scheduled classes.
I think its time I tell you why.
Since April of this year, I have been losing vision in my right eye. Currently, it is classified as “severe vision loss”. I have tried to carry on with my life as usual, but I just can’t anymore. At least not for now. I have seen many doctors and done a bajillion tests (MRI/MRA of eyes and brain, spinal tap, and blood test after blood test) to find the cause of it and get treatment. As of this week, I do not have a complete diagnosis. They just know I don’t have a brain tumor or MS, (Thank God) but, pictures do show I have the beginnings of optic neuropathy. Unfortunately, it has now been confirmed, that the same thing is starting in my left eye. I knew it was but I didn’t want to admit it. I really can’t believe this. NOW in BOTH eyes?!? We just want to know what’s going on.
This week I started super mega high doses of IV steroids to hopefully stop the swelling and decline of the optic nerves. I have been told to lay low and let the steroids do the work. That means I have to deal with some crazy side effects (insomnia and moodiness…watch out everyone!) and take a break from teaching my high intensity group fitness classes & workouts for a couple weeks while on the steroids. ANYONE who KNOWS me will know that these doctor’s orders just kills me. I love my classes & workouts…they are my therapy and just part of my daily life. You fitness types know what I’m talkin’ about here! But, I have to be real about what is going on with my vision. It is way more important! I will do what I have to do to reverse this.
Next week, I’m going to Los Angeles to see another Neuro-ophthalmologist (my third one). He is a colleague of my doctor and we want to see if he can detect anything else going on. The doctor I am with now is AMAZING and is fighting for my vision with everything he’s got! I practically live at his office just waiting for tests results to come in. Just waiting for an answer.
I am too young to have this happen! I told my doctor “Hey, 50 is the new 30! I’m too young for serious vision issues… I got things to do!!” He laughed and agreed that as healthy & active as I am, THIS should not be happening. I know Im in good hands and he is going to figure this out! I have to believe that. What else can I do…
Here’s a couple things I need you to know….
ONE… I will not be on social media as much as I was. If you private message or text me, it may take me a bit to get back to you. Reading on the computer or phone is getting difficult. Even with my trusty “granny” reader glasses on. Sigh. I’m struggling and the strain on my eyes is too much, so I have to limit it. Feel free to call anytime… you know I love to talk.. and then talk some more!
TWO… If I don’t recognize you, don’t think its because I’m a rude bitch. I’m not ignoring you! I just can’t see the details of your face. Just come closer to me and say “hello”! Thanks!
Now…I’m not looking for a big sweet “Pity party”! OMG, TRUST ME….. I will join that party in a heartbeat!! That’s not a place that is going to keep me mentally focused on what I need to do. A positive mind set will keep the body in a positive place to heal. I need that healing MORE than ever right now. The thought of going blind is way toooooo overwhelming. I try not to think about that. I just can’t deal with that possibility. That can’t happen. I I have too much left in life to do and SEE. I have to believe I will recover from whatever is going on. All your positive prayers are needed. Your friendship, support, and love is also very much appreciated.
My fingers are crossed that we are getting closer to the answers we need so we can solve this mystery and move on!!! I will post updates when I have them. Thank you and hugs all around to my family and friends! xo”
….12 days after I wrote this Facebook post, a DNA test revealed I had LHON. You know the rest of the story. xo
My heart goes out to you & everyone else that has this terrible disease LHON. You have been such a great support to all your fellow brothers & sisters of LHON. I am so happy that I made the right choice to ask your permission to get you & Lisa connected….you two are like sisters….so much alike in so many ways. (Know who she is talking to on the phone when I can’t get through to her for hours…LOL) Meeting you at the conference is June was great. Stay strong and never be afraid to ask for help or support….love you girl….
I just read this blog and want to thank you for sharing your deepest feelings. My daughter is 15 and just diagnosed and Some days are so hard for me. I would give up everything to have her vision back. She is such a strong girl, but I know she will have some real hard days to come, very unfair but true. I am feeling so exhausted from worry, and trying to understand all the medical stuff. Always wanting to guide her in the best way possible.
I know you had so many fears and doubts at that time, and I love how far you’ve come and the new strength you’ve found since then. I’m so sorry you’ve had to go through this. You’re more amazing than you ever knew you could be!
I can so l relate to your writing. I started loosing my vision about five months ago, exactly as you described it here. I’ve done everything you have, except that I turned down the steroids due to the side effects, cost in time and money, and knowing it doesn’t likely actually stop the vision loss, just potentially would relieve the pressure on the optic nerves. I have chosen to spend my time learning as quickly as possible to adapt to my new world of sightlessness with O&M, ADL (learning important daily living skills such as cooking, cleaning, getting dressed), and technology resources – all while the medical people work to determine what I have, and determine if I will ever be able to see with my eyes, which is a very slow process of appointments, tests, delays, and do it again. But the prognosis continues to point to a life of blindness. It’s now been about five months of darkness. But I don’t use that word since I don’t actually see “blackness,” rather don’t “see” anything. My brain uses other senses to perceive life. Although I’m totally comfortable with the “B” word – since that is what I am – I prefer the word “sightless” since my other four senses provide me 80 percent of getting information to my brain and providing perception. As any blind person can tell you, you perceive the world in different ways. It’s certainly not easy, sometime horrible, but I want to go on with my life, It’s just a bit different now. I try to use all the resources available for a blind woman. I also find I am better off with new friends who meet me as a blind woman. They are not judgmental, just accepting of me as a blind woman because that is what they know me as. People from my former sighted world tend to be overly sad, horrified, and tend to pity me. I don’t need any of that. Thinking about what I have lost just takes me away from moving forward in my new world of sweeping and tapping, touching and feeling, smelling and tasting. All those senses work fine. And I’m learning to be patient with others who try to pull my hands, yell in my ears, and tell me when I’m trying to find my way, that “it is over there.” Thanks, but that doesn’t help me much! My three cents (due to inflation). I write every day a blog to myself to practice writing without seeing in my daily missive called, “Notes from a Blind Girl.” Good luck to everyone else who is gong through this minor life change. Carla Ernst 414.614.67873