I wasn't that Lucky…but, I was Lucky enough!
I’ve contemplated getting involved in clinical trials for LHON treatments in the past. I’ve never gotten involved in one, for one reason or another. (i.e. location, travel, qualifications, schedules, etc.)
Well, one of the newer clinical trials is being overseen by one of the world’s top Neuro-Ophthalmologist, Dr. Alfredo Sadun. He is at the Doheny Eye Institute in Pasadena, CA. With his office about 2 hours from my home… I thought “Hmmm…Ok, what the hell! They need people to do these studies to find a treatment/cure…. Maybe I should look into it!”
I made the call. I went for a consultation & screening to find out if I would be a good candidate for this relatively new LHON clinical trial involving the use of eyedrops over a period of time. All I knew is that they were looking for folks who had the mitochondrial genetic mutation #11778, had become affected (had vision loss) within the last 10 years, and fell between the ages of 18 to 50 when their second eye was affected. Okay, check, check, and check! I fit those requirements! We now needed to figure out if I fit ALL the other medical mumbo-jumbo criteria that would allow me to participate.
The screening consisted of many tests to evaluate my vision and optic nerve health. I did several visual field tests…Yuck! and had lots of photos & scans of my optic nerves domne. I’ve done them all lots of times in the past. Nothing new to anyone who deals with this disease.
As I was waiting between tests, one of the assistants said to me… “Dr. Sadun said that you gave quite an impressive talk at the LHON conference!” Whaaa? He said THAT!?! For realzz? Ahh…I was totally flattered! That definitely made me smile throughout the duration of the testing!!
So, things were going pretty good! I mean, I’m only about 3 years into this LHON gig, my optic nerves can’t be thaaat bad, and Dr. Sadun is talkin’ me up with the staff. Not gonna lie, I was feeling mighty positive at that moment! Hey, whadda ya say we finish up this day! Just assign me a seat on that clinical trial train! Give me those eye drops…and I’ll be on my merry little way…! I was in the middle of my own mini magical moment, when Dr. Sadun AND another top Neuro-ophthalmologist, Dr. Valerio Carelli from Italy, entered the exam room. OMG… I was getting a two-for-one! Two of the world’s BEST were right in front of me!
Dr. Sadun didn’t really waste any time after our “Nice to see you again…” greetings before he gave me the news. After reviewing my test results, I did NOT qualify for the trial. Unfortunately, my optic nerves are not as healthy as they need to be to participate. Oh. Didn’t see that one coming.
I’ll admit, I felt a bit disappointed. I had made the decision to do this, and I really wanted in. I know a lot of people who want in on these trials and are not able to do so. As I’ve read many times on social media, some folks in the LHON community believe that because a person has the common mutation number, falls within the age range, and affected time period, they are the lucky duckies. The lucky duckies who get to take part in the current LHON clinical trials. Well, that’s obviously not the case! The state of one’s vision and optic nerve fibers is a huge factor in snagging a spot in the various trials. There’s just no guarantee.
I wasn’t that lucky in getting a spot in the trial…but, I was lucky enough to take home some things that I’ll keep for a while. One, I will never have to wonder whether or not I woulda, shoulda, or coulda qualified for this. Two, I had the opportunity to sit and talk with two of the world’s top Neuro-Ophthalmologists about my LHON history. Nice! Right? Well, here’s the best one! Three, Dr. Sadun made a point to tell me himself, that he was really impressed with my personal perspectives on “Emotional Adjustment” to vision loss at the recent LHON conference. (Photo of panel to left) He felt that my ability to share my emotional experience with such spirit was well done. As I spoke, he noticed that the attendees laughed with me as I added relatable humor to my early struggles. He was very complimentary and I was thrilled to hear all this from him. Wow and Wow! I don’t remember his exaaact words, but, that’s pretty damn close! What a kind gift he gave me, for being…well, just ME!
Despite feeling discouraged by the news of that day… I feel even more encouraged to continue to participate as I already do in the LHON world. With GGB fans all over the place, including in a small exam room space… this girl has got to keep running the race!! I actually hate running… but you know what I mean!!
OMG! Where's My White Cane?
I carry a huge purse with all my blind “stuff” in it. When I take things out of my purse, they MUST go back into my purse. Does that always happen? Apparently not.
Last week, my son drove me to an appointment and graciously walked with me to the right office.
Even though these offices were unfamiliar, I told him he could leave because < with hands on my hips > “I’m a big girl and I can do this aaaall byyy mySELF”!
As I sat in the waiting room, I thought it would be a smart idea to get my cane out and in view. That would help the people around me see my invisible disability. After all, this was an unfamiliar place, I didn’t have anyone with me, and no one knows I’m blind. Now, I hate whipping out my cane just as much as the next blind kid, but, sometimes it’s in one’s best interest to do so.
I started feeling through my purse to find my white cane. I didn’t feel it. I dug around some more. Hmm…wallet, iPhone, headphones, magnifier, lip gloss, black sharpies, wine opener (don’t judge), sunglasses, more headphones….Oh. Sh*t. Where’s my cane?
I could sense my anxiety level start to rise or maybe it was a hot flash!?! Doesn’t matter…they’re both hideously uncomfortable! As my heart was racing, I was trying to think about how the hell I was going to deal with this little situation.
This moment was a first for me! Okay, so now what? I guess I’m going to have to tell whoever I come in contact with that I can’t see very well. Using the phrase “I can’t see very well” always goes over better than saying “I’m actually legally blind. I realize I’m looking straight at you, But don’t let that fool ya! Now help a blind muthahh out!!“. Yeah. Always good to keep it simple. I’m also gonna need to ask for assistance to get from point A down the hall to point B, through those doors to point C…ugh. Hey, I wonder if I have any Xanax with me? Damn, no water. Could I just chew it up like a Flintstone vitamin? Hmmm. Then, in the middle of my debate on the chew-ability of a Xanax, I heard my name called. I carefully walked towards the voice.
I usually have a cane with me, just in case I need it. Maybe I need to change usually to ALWAYS. There are those times when I can get around just fine without it. This was not one of those times.
With or without a cane, I may still have a little trouble finding the right door as I maneuver through the maze of chairs and people. With a cane, the people around me would understand if I was having trouble, and may offer to assist me with finding the door. Without a cane, the people around me would not understand my hesitative actions. I’d probably come off like a dumb blonde who may benefit from a round of “Marco Polo” to find her way through the maze. Sure, “Marco Polo” is a fun game… but, we’re not at the damn pool! Having a cane in hand seems like the better scenario here!
I managed to put my anxiety aside and got through the appointment. I think I told about 7 people that “I can’t see very well.” I got home caneless, yet accomplished.
Final score: GGB – 1 Blindbess – 0! Winning!
I know I still have plenty of cane “issues” running around my pretty little head. I know the more I use the cane…the more comfortable I’ll get. On this particular occasion, my inner control freak caught me empty-handed and it taught me a lesson! It’s definitely better to have your cane and not need it, than to need your cane and not have it! Yep!
Delicious Enough to Come Back for More
What? What?
I was doing some admin work on my blog site and I came across the “views” stats. Holy shit.
YOU GUYS…my blog has had over 30,200 views since it was launched in January 2014. That’s incredible! That’s crazy! That’s so damn cool! WHO do I have to thank for that Number? YOU!!
I am so thrilled that you all believe that GGB is worthy enough to not only read once, but, delicious enough to come back for more! You have subscribed, shared, and commented with your thoughts and feelings. You have freely given me encouragement, support, and love. Me. The girl who never wanted to write this blog, but needed to.
I’ve spent hours pouring my heart out, opening up my personal life, and telling you the raw fucking truth about dealing with vision loss… dealing with Lebers Hereditary Optic Neuropathy.
Thank you for your loyalty. Thank you for believing that I could help you in some way with my writing. Thank you for making GGB my new normal. Thank you for going through the good times, bad times, laughter, and tears with me. Thank you for always coming back for more. I’m pretty sure GGB is gomma be around for a while…. So, I suspect that there will be more deliciousness coming to a blog near YOU! Love you all…xoxo
Those Moments That Medicate Us
All of us blind kids have a good “You won’t believe what happened!” story to share. Most likely, we have more than 1, or 2, or 20 stories. Stories involving close calls, mishaps, or good blind intentions that caused us to feel slightly embarrassed or totally mortified. The various “situations” we get into are not because we are clueless or careless. They occur because we are legally blind.
I’ve heard lots of stories from friends in the blind community. The common theme is a simple one….an innocent mistake is made due to our vision loss.
On social media, these laughable moments have been categorized as “Blind girl problems” or “Blind guy problems”. Now I am well aware of the fact that not every blind problem or moment has a humorous flavor to it. But some do. Some of the most horrifying moments can be downright “laugh ’till I’m dead” funny! I recently had a sitch that could’ve fallen into the horrified category. It was such a close call!
So, the husby and I were heading into Costco last week. As he walked over to grab a cart, I boldly decided to look for a trashcan to throw away my gum. I use the term “look” loosely. I looked over to my right and I saw a trash can shaped object next to the wall. “Oh good” I thought, and I headed over there, with cane in hand. I got within a foot of the brown object and as I reached for the wad of gum in my mouth to throw it away, I felt a jolt go through my body. It was as if the universe had tasered me. Like on an episode of “Cops”. Sorta. Okay, not exactly, but pretty close! I froze. The object was not a trashcan. It was an older gentleman…… or lady…OH hell if I know!….wearing brown clothing, sitting next to the wall. Holy shit! I quickly turned and walked away. Oh. My. God! What a close call! HOW would I have even handled that? Apologize profusely and offer to cut the gum out of their hair?? Where would I get scissors? I don’t even KNOW! What I do know, is that I CAN share that story now and laugh and laugh and laugh.
As I already said, not every blind girl or guy problem, story, situation, or moment has to be shared. The horrible and stressful moments we encounter, can be quite upsetting. I suggest that those types of experiences, or other issues, be discussed on the comfy couch in a therapist’s office. (That’s what I do, and I strongly encourage anyone to seek professional counseling if they need to.) The harmless and hilarious experiences are the ones we enjoy sharing and hearing about.
They say “Laughter is the best medicine” and I thrive on that medicine. I want as much as I can possibly get to help lighten up this unexpected life! Thank God we don’t need a doctor’s prescription for laughter! We just need to surround ourselves with the right people who will create and nourish those moments that medicate us!
Lots to Watch and Nothing to See
Maybe someday it won’t bother me that I’m the only one in the crowd who isn’t able to do it.
Maybe someday it won’t bother me that I’m not able to feast my eyes on the colorful, the cuteness, or the catastrophes that pass us by everyday.
Maybe someday it won’t bother me that I am no longer able to indulge in the fine art of “people watching”. Maybe.
People watching is pure visual entertainment. It’s fun and fascinating to most. It can be done anytime with anyone, or no one at all. People watching can be done anywhere… like at the airport, the mall, a coffeehouse or bar, a park, a sporting event, the doctor’s office, etc., etc., etc. It’s free to do when you’re waiting, bored, or just pondering and passing the time. It’s the kind of thing us older types did BEFORE you could carry a phone with you.< GaaaasP! > I know, I know, unimaginable! People watching is an activity that everybody does. Whether you realize it or not, you do it. It’s human nature my friends. Now, as for the current me, there’s lots to watch and nothing to see.
There’s not much to “watch” through my eyes, and it’s such a bummer!! Watching people can be so interesting depending upon where you are! I recently went to one of the best places to binge watch people….Las Vegas! Now THAT place is the visual entertainment capital of the world!! As my family strolled down the busy strip, they would see people and harmlessly whisper… or sporadically blurt out comments about the goings on around us.
”Wow… those ladies are too old to be wearing those outfits!” Me: How old do they look? Sorta old or old old? what are they wearing? Miniskirts? Crop tops? Slutty shoes? Whaaat?
“Are those actual Chippendale guys over there?” Me: Black bowties, black pants, and six pack abs? Where? Where? Take me closerrrr..Show mama the eye candy!
“OMG… That lady is practically naked with little dangly things hanging from her boobs!” Me: We’re in Vegas… no surprise… I know what boobs look like…keep walking!
“Look! There’s a guy over there who looks like Walter White! Me: who? Wait… The guy from Breaking Bad? Does he reeeally look like him? In what way? Huh? Huh?
You guys, the GGB struggle is REAL! Oh…Oh… that’s a hashtag! I totally admit that I’m just like a little six-year-old who won’t shut up! “What zat? What zis? What zat?” It was Vegas for God sakes! I need deeeetails and don’t even think of leaving out the GOOD stuff!!
I know there are lots of ways to enjoy my surroundings without using vision. The sound of slot machines, roulette wheels, and the glow of bright Las Vegas lights are all very exciting. There’s no place like it! But, there is something to be said about taking in the sights of the people! I suspect that many of you would agree that gorging at the “All you can watch” people buffet is definitely part of the overall Las Vegas experience. It just is. My kids will vouch for that!!
With big advancements happening every day in the world of sophisticated superhero assistive technology… I have no doubt there will be a device or app to assist us very soon! C’mon! They have an app for everything! Any and all technology is appreciated by us blind kids…. But, nothing will ever make up for the loss of our God-given ability to stare at those sexy pieces of Chippendale eye candy! WAIT! Whoopsie! Uhhh, I mean, our ability to watch and ponder the stories of the people who pass us by everyday.
If All Else Fails… Amazon Prevails
I’m always learning and RElearning how to get things done as I adjust to living with vision loss. I discover helpful little things, and big things, that become favorites of mine. Favorites that help make day to day life a little bit easier to manage!
I got to thinking… Since Amazon has become a real “GO TO” for me, then why not give them a shout out in case others, who are blind or Visually impaired, don’t know they are accessible with voiceover.
So, let’s get to it! Here are two awesome services from Amazon!
AMAZON PRIME NOW ~ A few weeks ago, I was stressing out about getting to the store for a few items I needed THAT day. You know, chocolate, a bottle of Pinot Noir, a wedge of brie, etc…just some basics! Ha ha! My son told me about an iPhone app that would help me out and calm me down! A two-for-one if you will! You can download Amazon Prime Now and shop for thousands of daily essentials, grocery necessities, or specialty store items. You can order 1 thing or 31 things, as long as you hit the minimum purchase amount, (Currently $20.). They offer convenient 2-hour windows that you can choose to have the items delivered to your front door the same day!! NO transportation required! WOO HOO!
AMAZON PRIME PANTRY ~ “Low priced everyday essentials, in everyday sizes, delivered to your home.” Well, that pretty much says it! You can go online and fill a huge box, and I mean huge, full of things you can find in the regular grocery store and have it delivered to your front door within a couple days. I’ve even received it overnight! Prime Pantry doesn’t have every name brand available… but, there is definitely a little bit of everything. The prices seem to be in line with standard store prices. If the price seems high… I just don’t buy it. One more thing, when that huge ass box arrives at the front door, it’s like Christmas morning y’all! Oh look! I got coffee, shampoo, almond butter, dish soap, protein bars… omg…just what I wanted! Yipee! NO Santa or transportation required! Woo Hoo!
I did need some help to set up the Prime Now app on my phone, and there was a little trial and error period. But, just like anything else, it takes time to learn new things in the wild blind unknown. Lots of time. So, whether you’re legally blind or fully sighted, I hope Amazon makes your life a little bit easier to manage! And remember the best part… No transportation required!!!!
*Note: Amazon services and information are subject to change. Currently, you have to be an Amazon Prime member to use the above services. The shipping/delivery service is only in select areas.
It Takes Two to Tandem!
I used to work out constantly! I was teaching 8-10 group fitness classes a week, running a boot camp, and working out at home. I was in the best shape of my life! I worked hard and I played hard! Then, I started to lose my vision and my life. got. hard.
I gave up teaching some classes, boot camp was too hard to manage, and I rarely worked out at home. I reverted back to old eating habits because it was easy and I didn’t care. Eating is what I did between bouts of crying and wondering “How the hell am I going to live this way?”. I started to slowly gain weight. Shit, I was going blind… with no treatment or cure. Nobody, I mean, NOBODY would blame me for gaining a few pounds!! Right?!? Oh, I can justify anything! Well, those few pounds turned into a few more pounds as I struggled to find ways to cope with my vision loss. I was less active, I ate more, and here I sit today, 20 pity party pounds heavier. Damn, 20 pounds! What in the WHAT? I guess I can’t blame the dryer for shrinking my clothes! UGH!!
Anywaaay… enough about the extra junk in my trunk. Let’s move on. These days, I’m still teaching a few weekly classes, but, I need more exercise to get my physical health, my fat ass, back under control! I’ve spent too many years overweight in the past, AND I can’t let these uncontained curves add to the challenges I already have. Whatz a blind girl tah DO??
I heard about an organization called the “Blind Stokers Club” (BSC) some time ago. What is a stoker? Stay put, I’ll get to that! The club helps blind and visually impaired folks ride a bike with the use of tandem bicycles. Hmm… was it for me? Would I like it? Could I physically handle it? Okay… why not? I decided to try it! You know what they say…”You’ll never know, until you try!”
I tried it, AND I LOVED IT! I am now a stoker in the BSC! I was matched up with Bradley who is an amazing captain! He has years of experience as a cyclist and I was confident he knew what he was doing right from the start! We are both pretty outgoing and slightly competitive. Actually, he is super competitive and pushes me just enough tosee what I am made of. He has tons of confidence in me and I have tons of trust in him. But, I truly believe that the biggest reason we were matched up, is that he is just as much of a coffee addict as I am!! BO–NUUS!! (Check out his tattoo!) Many of our future training rides will undoubtedly involve a stop at a unique coffee house to “refuel”!! His wife, Rachel, rides with us on a single bike. She is awesome and I love having her on the rides too!
I’ve had people ask me what a Captain and a Stoker does as a team. I’ll tell you what I know at this point in my cycling career! The captain sits on the front of the bike and the stoker sits on the back. If you are going to captain, you have to be conscientious and hyper aware about the terrain ahead.
The stoker has no control…gasp!….over the gears, braking, or steering so he or she relies on the choices made by the captain. The stoker really has to trust the person captaining the bike, and the captain has to rely on a stoker who is steady and responsive to what the captain says and does.
The captain communicates to the stoker what speed/power is needed or not needed and what’s coming up ahead. Bumps, stops, turns, cars, etc. need to be verbalized to the stoker. Sometimes the stoker has to shut UP if the captain needs to communicate something important. THAT’S never happened to me! Ha ha! Hey..I can shut up if it’s a life or death sitch!! After a while, I suspect that some of the cues may fade over time as the riders become a true team. Lastly, compatibility on a tandem bike is key! Bradley hasn’t kicked me off the bike as of yet and I haven’t felt the need to exchange him for a new captain!! So far so good!
I’m looking forward to riding many more miles with my captain and the BSC. So here’s to losing weight, gaining friends, and experiencing new adventures. I’m realizing more and more that I have to create my own opportunities to experience how to do things differently in this unexpected life. Be sure to keep a watch for us on a bright red tandem bike cruising down the road!
For more information on the Blind Stoker’s Club, visit them at www.BlindStokersClub.org
Bradley’s coffee tattoo by Meg Knoble at Buju Tattoo.
An Epiphany will set you Free!
Hey! Remember me? I sure hope so!
I know this post is way overdue… actually, it’s ri-donk-ulously overdue! I could tell you all the nitty-gritty and blah, blah, blah that got in the way of me sitting my ass down and cranking out blog posts over the last few months…but, I’m not. Wait, on second thought, I might pick a few juicy nuggets to share in future posts. I mean, I haven’t been sittin’ around in my flannel pajamas waiting to win the lottery for shit sake! GGB has got some exciting stuff going on!! If you follow me on Facebook, Instagram, or Twitter, you’re pretty up-to-date on GGB. If you’re not following me on social media…WTH? GET. WITH. IT. and follow me!
Soooo…. Let’s just start here, now, today… with the big question being “What got me back on my blog after so long?” Okay, let me tell ya a little story. Little? Ha ha!! I know…I’ll try my best!!
Grab a snack, get comfy, here’s my story. It was just like any other morning in my office, I was sitting at my computer with emails open, Facebook up on my iPad, and text messages waiting for responses on my iPhone, and sipping on a big cup of coffee (duh!!), when I got a call from a friend. As we chatted, she asked me what I was up to. I said “Oh nothing much. Just reading some emails and I have a few calls to make.” We finish the conversation and hung up. As I turned back to my email…I heard a voice. It said “Nothing much?? Why the hell did you just downplay what you’re doing? You made it sound so meaningless. Gurrrl…wake the f*ck up! All that Business is important and it’s what you do now. This stuff is not a “hobby” filling your day in the dungeon. It’s your path and you need to realize how important it is to keep walking it. So, set yourself free from the bullshit and get it together Maria!! > KA-BOOM! < That voice was my “inner bitch” slapping the shit out of me! WOW!! I sat for a long time and thought about it. The words sunk in. I got it.
What a huge EPIPHANY! I suddenly understood how horribly off track I had gotten in the last few months!! This blog, and many other GGB projects, have been pushed off the list because they didn’t feel important enough to me. It’s easy to ignore your ideas and projects while they slowly disappear into the background and fade from your vision. The vision you “see” with your heart and soul. The vision you should never let go of… and I did.
My days consist of hours of phone calls with new folks and veterans in the LHON community, texts, emails, interviews, Skype, tweets, FB posts, AND I continuously start writing blogs to share (which I currently find I struggle to finish). What does all this add up to? Does this work I do have a name?? Yes. Yes it does.
I’m an LHON Advocate and proud of it! For the last 2 years, I’ve been helping others who are newly affected, carriers, and loved ones comprehend this life. I strive to bring awareness to Lebers Hereditary Optic Neuropathy and the experiences living with this rare mitochondrial disease. I shouldn’t downplay this work like it’s nothing! Girl Gone Blind, and all the things it represents, is probably one of the most important jobs I’ll ever have!
Stay tuned….. xo
You Can’t Replace A Face
I miss my family and friends so much.
They didn’t go anywhere…. In fact, I see many of them everyday. There IS something different about them. There IS something different about me. The difference is that I’m legally blind and their faces do not exist in my world anymore. The onset of Lebers Hereditary Optic Neuropathy (LHON) is usually sudden. You don’t really get the chance to understand or even process what (or who) you will be missing due to vision loss.
Maybe it doesn’t look like it bothers me on the outside, because I can hide the stress, anxiety, and fear of it all pretty well. But, unless you become blind, unexpectedly, you will never know the pain and heartache of sudden vision loss.
I miss facial expressions so much. The “looks” of happiness, excitement, laughter, and sadness have disappeared. I miss eye contact and non-verbal communication. I miss visual connection and interaction. My “gift of sight” was stolen by LHON, leaving feelings of disconnection, isolation, and deep sadness left in its place. And trust me, those feelings can rear their ugly little heads when you least expect it.
I know I can look at grainy, blurry photos of the people in my life blown up as big as the sun on my computer or CCTV… but, guess what? it’s. NOT. the. same! Please don’t start with the “at least you can see something.” crapola! That doesn’t help in those moments of loss. Magnification is my hero and I really am grateful for it. The “assistive technology” devices will never replace the personal visual connection I no longer have with my family and friends…. Because,You can’t replace a face.
~ On September 24, 2013, I entered into the world of LHON. Two years ago today, I was finally diagnosed by a mitochondrial DNA test and LHON became a household word. Over the following month, I slowly became legally blind and my family and friend’s faces slowly vanished. I will continue to “see” people for their heart and soul, it is what it is, that’s all I know.
Hiding in Plain Sight
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
Hello! Here is a little about me. I am a mom of two fantastic kids, group fitness instructor, transformational speaker, blogger, podcaster, and advocate in beautiful San Diego, CA. Oh, and as my website name would suggest, I am also legally blind. Yes, I’m a Girl Gone Blind — and I’m here to tell you all about it!
Girl Gone Blind 