Two Years Is Not Very Long

Good morning readers,

Today marks 2 years to the day that I woke up and could not feel my left leg.  Technically, yesterday was, but this marks the day that I really 'knew' what was going on.  I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.

Something was wrong ... and I knew instantly that it was MS.  I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty.  I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion.  I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on.  It was a sad and oddly supportive time.  I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait. 

Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened).  I had Multiple Sclerosis.  I read the report describing several 'foci of restricted diffusion,' the title of this blog.

Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child.  I am 32 weeks along and she is kicking away today.  I am just as scared as I was two years ago, but for entirely different reasons.  I have a new reason to be excited for the month of March, and it isn't job interviews and trips.  It's getting ready for my Tesla.

I wish I could say that in these last two years that I have really learned a lot.  I have, but so much of it has been negative that I choose to try and focus on other things.  My mother has declined into a complete state of paranoia, frequently.  I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot.  Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.

Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband.  It's a lot of things to take in!

Love to all, MSloan

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.

Merit Badge for Demyelination

Oy.  Okay, so today has been one of those really rough days.

I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine.  Which, if you've never had to do that, feels like torture after about 80 minutes.  It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"

So I was hoping that the MRI experience would be over for this year.  WRONG.

Today, I was supposed to go in to start Gilenya.  I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process.  So I decided to go in way early just in case.  I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else.  So who else wouldn't be freaked out?

When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed.  But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.'  I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.

WHOA, hold the phone, I failed?  Let's recap.  I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right.  After a battery, got diagnosed, then treated with a 5 day course of Solumedrol.  It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway.  The 9mm lesion in my left temporal lobe is now 3.3cm.  Centimeters!!  Tripled in size.  Whoa.

Just, whoa.  How are you supposed to feel about that?

They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP.  I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half?  What a freaking nightmare!!!

Oh, and did I mention ... happy birthday to me?  OY!

Don't Move, Don't Breathe, Don't Do Anything Except... Pray

Today was a rough day.

You know what I mean, rough day?  Like, everything makes you want to cry kinda day?  It was definitely one of those days.

Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again.  We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished.  Way stressful.  So let's start the day there.

I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness.  As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things.  And of course, this morning, I had someone who was on the higher end of MS symptoms.

I truly love my job, because the people I see need me as much as I need to see and help them.  It is healing on both fronts.  But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others.  You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.

It doesn't help the heartache when they leave that there's very little you can do.  And it doesn't help you feel hopeful that your own condition won't look like that in a few years.  How else are you supposed to feel about MS when that is what you see every week?

Later today, I had another appointment with the radiologist and hour from work.  I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes.  That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.

Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.'  It's really how you feel.  And about 80 minutes in, I started to lose it, and wanted to scream to get out.  Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride.  When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI.  I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.

Obviously I made it through okay, but what a nightmare.  I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me.  Oy.

At least I grabbed a bagel on the way home.  It's Friday, right?  Until next time -