Finally.... A Plan!

I finally got through to my neurologist!

We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options.  He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time.  I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.

Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no.  It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further.  While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:

His name is Dufresne, and I painted him on Sunday.  So I haven't completely lost my ability to make good art, and that's comforting.  It definitely wasn't the same, and painting on the black background certainly made it easier.  I'll have to re-teach myself to paint on light.  Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it.  I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours.  I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!

Well, here's hoping that I won't have any active lesions when we take a look in April/May.  Fingers crossed!
Love, MSloan

MSminds Chat - 3/16/2016

I found another chat on Twitter today - this one is called MSminds! 
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)

Q1) Has MS had an affect on your mental health?

Yes and no.  I have always suffered from depression and anxiety, but it definitely has spikes.  It hit a huge peak right before my big flare that got me diagnosed.  However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation.  Saved me a lot of pain.

Q2) What has your experience of mental health support from healthcare professionals been like?

Surprisingly good, at least as far as my MS is concerned.  My first neurologist asked me if I wanted to be put on an anti-depressant.  It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety.  I initially said no - but knew that I needed to do something.  I told her, "Actually... actually yeah, yeah I do need an anti-depressant.  Thank you."  Best decision I ever made.

Q3) What do you do to boost your mood?

 I have started writing a "Positivity Blog," every single day.  I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow.  Really is starting to help.

I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."

Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?

My blog!  http://itoocanlovemyself.blogspot.com/

Q5) What more could be done to educate MSers about looking after their mental wellbeing?

Let them know that there is nothing scary about medicating for depression/anxiety/etc.  I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).


Thank you all, this is a really important topic!  I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan 

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

Keeping A Record

I have been on a path of healing.

My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness.  It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again.  As an artist, that's very painful.  But I'm trying to move forward, and not stay stagnant with my feelings.

Facebook can be an excellent record keeper, did you know that?  As I have been getting older, I have become less whiny in general over my circumstances.  But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were.  Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea.  I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months!  As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record.  And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.

I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal.  This book describes me and my experience to a T.  I  feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.

I hope you find your healing as well.  Love to all,
MSloan

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.