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True Life: My Optic Nerve Ran Away

Hey there, bitchachos. Today I bring you an exciting post about the gift that keeps on giving – my multiple sclerosis. I’m only recently talking more openly about it so I figured it’s important to educate you on what it is and how I came to be diagnosed. Grab your hankis and hold on.

What is MS?

Multiple Sclerosis is an autoimmune disease that attacks the central nervous system, which consists of the brain, optic nerves and spinal cord.

In Diana words, this means your immune system is a cunty Judas whore who betrays your trust and instead of keeping you healthy from virus and disease, it produces anti-bodies that attack the very delicate body it’s supposed to protect.

Sounds intense, right? Sometimes it is.

How do you know if you have MS?

There are many symptoms such as vision loss, abnormal sensations and difficulty walking. Those are just a handful and because everyones experience is unique, it’s best to tell with an MRI. You can see lesions on an MRI. They are white and look like brain craters. Some go away and others become plaques, known as “black holes.” Black holes signify myelin that has been lost and nervers damaged beyond repair. Like a runaway train, that myelin is never coming back.

Say what?!

What.

You got some Nerve, MS!

Yes, MS is all about nerves, but mostly destroying them as you can see. Or not see.

I don’t understand. I need more info!

Here is a passage from the National MS Society that better explains it.

As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

How do you get MS?

There are several ways you can contract MS. The most common way is by snorting dirty cocaine off public toilet seats. You’re calling to schedule that MRI, aren’t you? Well put down that phone silly because I was just joshin’. Science actually doesn’t know the cause although there are several factors such as environmental, immunological, genetic and infectious. Vitamin D deficiency is a big thing and I’ll be writing about that more in future posts.

Now that we’ve taken care of that, the following is a day-by-day account of how I came to be diagnosed with RRMS (relapsing-remitting Multiple Sclerosis). I wrote it right after it happened in January 2012, three weeks shy of my 28th birthday. Enjoy!

me as a vision of beauty_edited-1

Sunday

I start experiencing pain in my right eye. It hurts when I look left, right, up and down. I express my concern to Vinny who tries to be sympathetic but actually just thinks I’m complaining.

Monday

The pain persists and gets worse. I am moody and uncomfortable. More so than usual. But it’s just discomfort really. If I keep still, I’m good.

Tuesday

The pain persists to persist. I remain moody and uncomfortable. It’s hard to sit still. Vinny and I Google “people with eye pain” and skim over the material. Vinny dismisses me but I insist. We see other people have this eye problem, too. I ADD and don’t register comments about MRIs. “Are you seeing halos?” Vinny asks. “What’s a halo?” I ask. “Then you’re fine,” he says. I don’t feel fine.

Wednesday

I wake up partially blind in my right eye. Now I see halos. Still not totally sure what they look like but I’m certain I’m seeing them. It’s getting blurry in here. Help! I call my friend Marina at Grand Central Optical to schedule an appointment with my optometrist. I used to work there so she fits me in for the following day.

Thursday

Dr. Block is there and I trust he will heal me. He examines my eye but can offer no positive results. He thinks it might be optic neuritis. I tell him I will Google but no doctor ever wants you to Google. I suspect it’s because they think they will go out of business. He disagrees and tells me to relax. Relax?! He recommends I see an opthamologist and refers me to (partially) see a specialist at Omni Eye Services 0n East 36th & Madison Ave. I schedule an appointment for the following day.

Friday

Dr. Katherine Mastrota needs to probe my brain for answers and so she administers a series of tests. There is one test where you have to look into a machine and press a button everytime you see a dot. I keep seeing dots but then my thoughts wonder about whether or not I’m really seeing dots so I just press the button. When the test is over and the results are quick. The doctor doesn’t know how to print the results and I giggle. But this is no laughing matter because I’m told that I do have optic neuritis. It can either go away on it’s own or it can be a sign of more nerve damage I’m told. They mention MS and say that if it’s more than just my eye, I will need steroids. The doctor orders an MRI, STAT.

I am frantic and blind. Blind because they dilated my pupils and temporary vision loss is, of course, is a normal thing. But I’m resistant to the darkness and frantic as I try to send Vinny a text message about how blind and frantic I am. Technically I should also know better since I do have optical experience. If I would ever see a patient trying to send a text message while their pupils were dilated, I’d call them %*(#@_. Oh well, %*(#@_ I was.

Finally I can see again! To the front desk I go to schedule my MRI appointment, which has been classified as “urgent.” Even though it’s Friday and everyone is already thinking about their weekends, the front desk girls kind and quickly get me an appointment at Metropolitan Diagnostic Imagine Group that day at 2PM.

I arrive at 1:30. There is no wait. I’ve never been in an MRI machine but I’m in good spirits. I’m not scared. I feel normal. I cry a little. They say I have to sit still or it will take longer. I don’t know how to sit still but I try really hard. The tech talks to me through the intercom and says I’m doing great. It’s amazing how nice words can make a difference during times like these. I want to continue doing great. I don’t move at all. Because I’m an adult.

The results and analysis is done in a New York minute. 10 minutes to be exact because this is, after all, urgent.

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Vinny comes to the city to be with me during this ordeal so he drives me back to the ophthalmologist. The office is closing but Dr. Mastrota has waited. She checks out the MRI results and tells me I most likely have MS and that I should go to the emergency room to get steroids. Mmmm steroids. Then she gives me a hug and tells me it will be okay. I ask if it’s absolutely necessary to go to the hospital. It’s highly recommended, she says. She gives me her phone number and we text until I make it to triage. Which takes a while because….

Vinny and I have a scheduled date night. It’s January and we’ve been hibernating from the cold and today we were finally going out. I’ve been craving the ceasar salad from Sea which is weird, yes, but my cravings have no boundries. Was I really going to let this MS derail my plans? Vinny tells me that it’s up to me.

We go to Sea. I’m crying because I can’t help but think the very very worst. Vinny is begging me to please stop crying because our waitress is unfairly judging him and thinking it’s all his fault. And fucking GOOGLE. Good for nothing Google with 41,800,000 results in 0.30 seconds of shitty news. The ceasar salad doesn’t taste like it’s supposed to. Neither does the chicken satay. I’m disappointed so I give up on our date night and Vinny tailgates his way to the hospital, where I’ll end up spending five days hooked up to an IV that feeds me delicious drugs medicine that will restore my vision.

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I spend my time at the hospital feeling like a one-eyed pirate without the patch and refer to myself as Cyclops. I encourage others to do the same but it doesn’t catch on. I share a room with a pleasant woman who snores loudly and unapologetically but am denied when I request Xanax to calm down when it starts to drive me crazy.  The physical therapist assigned to my case is a guy I was friends with in my teens and I’m once again reminded how obnoxiosuly small Brooklyn is. But at least I looked stunning, right? My friends come to visit with gifts and smiles. Marina brings grapes, Zohra brings a Saved by the Bell fridge magnet and my best friend Val travels from Philadelphia and spends three days hanging out with me. And Vinny? He proves to be an amazing fiancé and friend  and makes me feel loved, safe and like everything is going to be okay.

It wasn’t so bad but I was eager to get home to my bed and dog, Ninja. Even though I wasn’t able to take any of the stylish accessories home with me, it was as good as it gets when you’re at a hospital.

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And that, my friends, is the end of this story. I’m doing well today (knock on wood) and have had only one relapse.  Stay tuned for that story and more fun stuff about how I’ve been dealing and why it’s important to have a positive attitude no matter what hand you’re dealt. Subscribe to i’m too fancy via email to get updates posts in your inbox. Just do it.

Your turn. How does this make you feel? Do you have MS? Know someone who does? Just generally pissed at autoimmune diseases and want to rant? Leave a comment below.

14 Comments on True Life: My Optic Nerve Ran Away

  1. Russell
    July 15, 2013 at 3:08 pm (4 years ago)

    Hi,got diagnosed about 4 years ago,only had one small relapse in that time,had steroids for that.Try to keep stress free these days,only suffer with headaches and get a bit tired now and then but at this minute feel very lucky as in the words of the legendary joe strummer the future is unwritten.loved the piece you wrote made me laugh,hope that’s the right thing to say about such a serious topic.Well done.

    Reply
    • imtoofancy
      July 16, 2013 at 5:18 pm (4 years ago)

      thank you for reading and commenting, russell. i’m glad you enjoyed it and that’s definitely the right thing to say! better to laugh than to cry is my motto. i’m sorry to hear about your diagnosis but i love your positive energy and outlook. cheers to a bright future!

      Reply
  2. Silvia
    July 16, 2013 at 10:21 pm (4 years ago)

    My dear Dee!

    I must admit I cried a bit and laughed while continuing to cry. I had no idea that you were going through any of this. MS is a bitch…but if anyone can teach it a lesson it’s you! Thank you for sharing your story in your unique and fabulous way! You were there for me when I needed it so please reach out if you ever need anything from me! One more thing, I know someone who is very involved with the MS society I would love to put you in contact with her, we volunteered together for another organization. Let me know. Sending positive vibes your way! Xoxox

    Reply
    • imtoofancy
      July 19, 2013 at 1:26 pm (4 years ago)

      Silvia! Thanks so much for reading and commenting. And thanks so much for offering your wonderful love. oh how I miss thee. 🙂 And I’d love to meet your friend. Let’s connect via email to discuss more! 🙂

      Reply
  3. Valery
    July 18, 2013 at 3:53 pm (4 years ago)

    Hello there! I love the story (and you) …can’t wait to read more about it 🙂

    Reply
    • imtoofancy
      July 19, 2013 at 1:24 pm (4 years ago)

      thank you! and i love you, back. 🙂

      Reply
  4. Daniel
    July 21, 2013 at 9:08 pm (4 years ago)

    You’re way too fancy for MS. I love you. Write more.

    Reply
    • imtoofancy
      July 22, 2013 at 5:30 pm (4 years ago)

      Thank you! I love you, too and I surely will. 🙂

      Reply

4Pingbacks & Trackbacks on True Life: My Optic Nerve Ran Away

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  2. […] then MS happened and shit got real. Real real. I had to change my lifestyle because apparently I would be […]

  3. […] those lucky searchers landed on the educational post, True Life: My Optic Nerve Ran Away. I hope they found some solace and relief that cocaine does NOT cause optic neuritis. Not a […]

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