Optic Neuritis - The Saga Continues

Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut.  I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.

As an artist, this is somewhat mournful, since I don't see detail the way I used to.  Even with both of my eyes together, there is a constant sense that something just isn't right.  Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well.   I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.

How I'm seeing, Good Eye Vs. Bad Eye:

When you have something like ON, once you mention it, that's all anyone wants to hear about it.  When it first occurred, my coworkers would ask how my eye was, for about the first two weeks.  When it didn't improve, they stopped asking.  I haven't been asked about it in over 10 weeks.  Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition.  I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.

That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others.  It's awkward.  No one wants to talk about it, and it isn't real to them.  It can't "be that bad."  But of course they feel that way, they don't have to live with it!  It just isn't real.  And honestly, it wasn't real to me in regards to my patients until it reached a certain point.  Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!

My positivity blog is helping with how I deal with the day to day.  I wish I wasn't facing drama at my workplace, but I am trying to rise above it.  It is so petty to fight with one another as adults, isn't it?  There are so many much more important things.

I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea.  I know everyone's ON is different - this is very close to what mine actually looks like.

About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan

Relocated

Hello all!  I know it has been a while since I posted, but that is a good thing for sure.

The last time I wrote, I was doing some art therapy.  I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually.  But right now, I'm just excited to feel well enough to create again.

I made the big move, and am now in California, very far away from the place I called 'home' my whole life.  I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.

On the MS front, I have been on Gilenya for over a month now.  So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to.  If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly.  I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all.  Which is AWESOME.

I started work this week, and I am so happy that I ended up where I did.  Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again.  I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.

So, there you go, world.  Right now, that's where the MS train lies.  I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent.  But I will prevail - and so will you!  :)

Results of Art Therapy, 5/18/14

This is the effort I put forth this evening since my last post.  Nothing compared to my lion, but he'll have to do.  Meet my "Shere."

Love all,
Sloan

MS - Instructions Not Included

When I started to not feel 'right' back in late 2009/early 2010, I had a simple thought run through my head every day that things felt off:

"I can't wait to feel normal again."

With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time.  Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.

The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past.  Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.

Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people.  I started writing fanfiction, drawing, and painting again.  I haven't painted in years, and I started doing portraiture work of all things!  Portraits are insanely difficult, but I loved every minute of it.  I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas.  It's the size of my kitchen table.)  It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department.  I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel.  I wrote a novel in 6 months for goodness' sake.

But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis.  I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.

So tonight, I'm going to try and do something that makes me feel happy again.  Tonight I'm going to start a new painting.  Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house.  I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now.  I hope they understand.

I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.

Love all.