Relapse?

Hey all.  Today has been an interesting day.

After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:

REDUCES.

It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe.  I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!

More updates to come - Love all!

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.

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.

Short Circuit

The unknown is the scariest part of this process.  When things start feeling better, sometimes they are not, as I learned recently; I thought my flare up was over, and I was finally healing and at a reasonable baseline, only to find out my lesions were continuing to spread.  Yeah, there's the big one, but there's another one as well, and now one in my cervical spine that gives me bad tingles when my neck is arched forward.

Today the sensation is just... well, numbing.  An absolutely constant tingle in the legs that is distracting.  It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same.  Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.

It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure.  I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment.  But nevertheless, it is embarrassing, and it didn't put my day off at a good start.  Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out.  Just a bummer in general.

With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better.  I have to put faith in these steroids, but at the same time, I am not so sure.  If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?

I wish I got the medical bill in the mail already.  All this waiting is driving me nuts.  I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?

An Open Letter to Unsolicited Advice

I know you're trying to make me feel better.  I think it's great if someone you know or someone you know knows someone else who tries XYZ to keep theirs at bay.  You're one of the few people IRL that knows about this problem, so of course you feel the need to downplay my 'type' and tell me that it 'isn't so bad.'

I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?

I'm not trying to be difficult, and I am not trying to feel special or more injured.  But I am not the people that you know, the people that you say cured their problem and you would never know it.  Of course you would never know it, this problem is invisible.  Have you asked them to tell you what they actually feel every day?  Did you not notice that I haven't volunteered information, or talked to you about it?

Did it occur to you that I'm not handling this very well?  Oy.  In my profession, we thrive on counseling and communication.  So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting.  I'm not bullshitting.  Who the hell would make this up?  What kind of a sick person do you have to be to pretend to have a degenerative illness?

I don't want to talk about it like that, I don't want to doom my psyche with negative thinking.  But sometimes negative thinking is the reality, too, isn't it?  Sometimes we have to consider the worst to move on for the best.  And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better.  If I could run my tingling into the ground, I would.  But I'll be honest with you, physical exertion right now makes me feel funny.  It isn't enjoyable.  And I mean all kinds of physical exertion, which is terrifying, and upsetting.  How do you think my husband feels?

I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising.  I don't know why this infuriates me so much, but it does.  It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay.  But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared.  I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning.  Because it is THAT unpredictable.  I could wake up, go to work, and feel shaky and nauseated all day for no reason.  You think I didn't try going to the gym?  You think I didn't try eating differently?  You think I didn't do everything I possibly knew how to do to make that go away?  What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.

Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified?  Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before?  I'm glad I'm not a damned surgeon, for crying out loud!  Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!

Deep down, I know you say these things because you need to feel less worried on my behalf.  That's great, thank you, I appreciate that.  But understand that right now, I just need to feel cared about, not downplayed.  The light at the end of the tunnel for school looks bleak and hard to reach right now.  And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself.  I already feel bad enough about myself on a regular basis.  I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.

....
The truth of the matter is, I don't think about it all the time.  I write this blog in the weak spots.  I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud.  I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons.  I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus.  Living with the symptoms?  Eh - it is 'not so bad.'  It is scary and horrible and uncomfortable, but it's livable.  I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people?  I am sure that when I start this drug, some things will change.  Maybe it will make me feel normal again.  Maybe I will be able to get back to the painting I worked so hard to cultivate this year.

My word for 2014 is 'joy.'  I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.

Margo

Sensational

The weirdest part of this latest flare up is the lasting sensations.

In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling.  For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates.  Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet.  Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.

It is possible that this is my baseline.  What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack.  Now I will compare future symptoms to what I am currently experiencing.  But, this could be much worse.  On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect.  Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot.  I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.

The last few days have been spent at a conference for my profession.  I planned to attend a long time ago; I am presenting a research poster.  The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down.  This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.

I talked to my coworker who also has MS and asked her when she was diagnosed.  There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist.  Her sensory absence was so bad that she would accidentally burn herself.  Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI.  I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.

What kind of lasting sensations do you have at your baseline?  Have you eventually gotten used to them, or does it still bother you?

Margo