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.

Star Wars

Today, I got a call from my neurologist.  Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.

My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones.  This is not a good sign.  Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!

I have done a little research on the drug they are going to put me on next.  Let's learn about it together!

1) What is it?

The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post.  I hope you find it mildly amusing :)

Acthar is called an Adrenocorticotropic hormone, or ACTH.  It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better.  I don't feel good about that, but let's move on!)

2) What makes Acthar different from the steroid injection treatment?

Acthar is not a steriod, but it acts something like one.  It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.'  You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems.  Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS!  It basically tells your immune system and inflammatory response to STFU.  It is essentially a natural steroid.  It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.

Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot.  It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg.  You have to give this drug to yourself in a syringe for a number of days when you receive it.  I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over.  I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now.  I haven't told him yet.

It will be a fun ride for sure.

3) Why do you need this drug?

You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated.  I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU.  That is where Acthar comes in.

My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option). 

4) Okay, so it should halt the progression.  What are the downsides?

It can cause wicked bad mood swings.  There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks.  General body swelling is another side effect.  This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.

I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break!  I hope this helps someone out there get a better idea of what is up ahead.  I will continue to update as a know more.  Thanks for listening.

Let's hope Admiral Ackbar isn't right this time...

Muted

Depression is not a presence of sadness.  Rather, it is more an absence of joy.

I am steeped in quite a pit of depression right now.  It is somewhat seasonal, and I can't say I'm surprised, but it is coming at a very bad time.

I had another MRI about a week ago, and the insurance didn't cover the brain, only the cervical/thoracic spine.  Those are apparently clear, but then it doesn't explain why I get the shocks when I move my neck forward.  And does this mean that my neurologist can't get a report on the brain, even though they took the images?  How does that make sense?  If I had to sit in the MRI machine for 2 hours and have a bruise on my arm as a result of a botched infusion of the gadolinium, don't I deserve to know what the heck is going on in my brain?

I'm supposed to start Gilenya next week.  I was supposed to start it today, but didn't find out until the end of last week that I needed to have a lot of pre-tests done before.  Called by the neurology MA - 'You will be hearing from this nurse to get them scheduled.'  'Okay, thanks, I will get them set up.'  Wait a few days, hear nothing.  Call back about the eye test - still no word.  EKG and blood test?  Still nothing.  Call the neurology MA again, feel like I get in trouble for not having it done.  But you told me they would call me?  Okay, I'll find a place to do it.  Okay, we'll move the start date a week out.  You know I'm supposed to move here right?  Okay, I'll wait to hear from them.  What's that?  That eye place doesn't want to do that test, they need to refer me out again?  Okay, I'll wait.  Oh, now you say I have to set up the other tests.  Fantastic.  I'll do that - oh, wait, no, on the day those are set up the nurse finally calls to get them scheduled at a different place so I don't have to pay for it.  Well, seeing as I'm broke and now have bills to pay, sure I'll take you up on that.  Haven't you done this before?  How am I supposed to know how this works?  Okay, I'll do that then.  Eye test today.

Did I mention I'm graduating tomorrow?

I am so unbelievably stressed out.  I feel like I'm having another exacerbation in the middle of all this.  I am having the MS hugs so frequently that I don't want to eat, which makes it worse.  I'm not feeling as tingly, which is good, but that changes by the hour.  I feel like crying all the time, and finally started now that I'm not at work.  I finished my internship yesterday, and now I have to jump right in to finding a place to live on the other end for my new job.  The new job!  It starts in a month.  I am not ready.  I need a break.  I have no time for a break, now I have to pack to move.  I have no energy.

This feels like a spiral.  I can't get a hold of anything.  There are so many things I want to get done, I need to get done, in the time before we move - and I just can't find the time to do it.  Now my husband keeps asking if I'll fly out to California to find a place to live soon - when am I going to do that?  Why do I have to do that by myself?  Oh yeah, because I'm broke.  Because there's no good way to end up in this situation, but this particularly sucks.  I have no one, I feel so alone, I feel like there are so many people in my husband's life who are not uncomfortable asking him how he's feeling but no one wants to find out how I'm handling it.  So, as a result, the few times I do get asked I end up lying - "I'm doing okay, it's stressful but I'll get through it."  "I think if God wants me to learn something, I better learn it fast, haha!"  "It won't help me get better to sit and feel sorry for myself about it.  Yeah, good for me.  I'm doing well."

Well, here's a confession for you, bloggies.  I'm not handling this very well.  I am depressed beyond belief and cannot bear to think about another poke and prod in the next few days.  I put on a brave face for all these medical tests, but I HATE needles.  I have been doing really well with all of it, gritting my teeth.  But I don't want to be put on a drug that will force me to inject myself every day.  I can't fathom having to do that, but that's where I'll be, since Gilenya is basically just a band-aid until my next neurologist puts me on something stronger.  This is terrifying, I feel weak and unprepared for life.  I spent so much money and time being told that I was destined for great things, and now I feel like giving it all up.  I feel like running away.  HA - running.  I made a running joke.  Get it?  Because now that I have had this last exacerbation, I can't feel my feet anymore at baseline.  Makes running really difficult.  HA HA HA HA HA.

This bloody sucks.  I graduate tomorrow and I don't even care.  I want my family to celebrate without me.  Why do I need to be there again?  My wedding was a cheap bust of a party, so I have been 'planning' a grand graduation celebration ever since.  The MS diagnosis really screwed that up, because now we don't have the money, the friends, the space, etc.  We are going to have a backyard barbecue at my mom's house, decided yesterday.  She is upset that my dad will be there.  It's a family event.  My husband is graduating too, so his giant clan of a family will be there.  They all have small children.  My mom has dogs.  It's turning into a mess really fast.  I don't want to go.  I want to run away, I want to see the new Hiddleston movie again, I want to pretend that someday a good looking British man will look at me and tell me that I'm pretty.  I don't want to feel like the ugly reflection I'm seeing lately, with dark blue-circle eyes from no sleep and poor diet.  I can't afford to eat better, I've had my last paycheck.  I feel like an observer in my own life right now, unable to tap in.  Why can't I tap in?

Thanks for listening, bloggies.  Until next time.