Wakey Wakey!

30 Sep

Yes they are:  Vicodin earrings

I slept until 8:45 am.  This is a bit of a record for me.  So much a record that it brought my husband up to bed to poke me, making sure I wasn’t – you know.  

This is one concession I maketh to thee o’ MS!  Not setting my alarm for 7am so I can get up and hit the day.

Maybe it was the Vicodin?

Okay, so back up a bit.

For the last month – I can’t even believe it has been a month that I have been living with degrees of this shit – I have been going through a relapse* (see note).

What this has meant for me:

  • The MS Hug – which is a Bullshitty McSunshine term for feeling like your ribcage is being crushed
  • Extreme Fatigue – and I am talking like fah-to-the-teege.  Example:  I was laying on the couch one day and my wonderful Tim was chatting about some such thing (probably the Yankees or Occupy Wall Street). He asked me a question – and although I heard it, understood it and probably could have sorted out an answer – I couldn’t even bring myself to answer him – physically couldn’t.  Then, I conked out for a full 2 hours.
  • The Laryngospasm –   This could be a contender for Most Favorite New Symptom. It is exactly what it sounds like – my larynx – out of goddamnmuthafuckin nowhere – seizes up sending me into Hackfest 2011™Hackfest 2011™ is the main contributor – that and significantly labored breathing due to afore mentioned Bullshitty McSunshine “hug” – to securing the Vicodin.
  • Numbness/Tingling/Weakness – Standard fare for my MS.  It is hard to describe this symptom to the uninitiated. My friends have been able to wrap their heads around this description I offer:  you know what its like when you wake up and your foot, leg or hands are asleep?  Annoying isn’t it?  Can’t shake that feeling, uncomfortable, maybe a little painful, itchy?  And for crying out loud you can’t use the thing (leg, hand).  Okay, now imagine that doesn’t go away.
  • No Sleep Till Manhattan – Enter Laryngospasm, the hug, labored breathing (and resulting anxiety) and Andy was getting some of the worst sleep ever.  Sleep.  I can’t tell you how important this is to me.  It isn’t just that my bod needs it to try and get well – my brain needs it.  I start to fall apart mentally when I don’t get proper sleep.  The depression I am feeling – another symptom of a melting brain – and from the Prednisone (see next paragraph) – becomes exacerbated by the lack of meaningful sleep.

The Cure:  So I am now taking 60 mg of Prednisone a day.  I started off with the rip-roaring dose of 80 and am reducing as the days go on.  This was the option I chose vs. the IV steroids – which would involve going into the hospital for a couple days and that wasn’t an option.  I have had the IV before and although it has benefits (quick 2 -3 days vs. weeks on oral steroids) it has its drawbacks (burned my veins – acky).

In the words of Rick James “Cocaine (he meant Prednisone) is a helluvah drug.”  Say it funkmaster.

The Cure has its drawbacks too – racing heart, sweating, insomnia and if I can juuuuuust stay on it long enough I have a shot at growing a lady beard.

Fingers crossed!

TODAY’S AGENDA:

  • Short Walk
  • Nap (s)
  • Reassess
  • Putter
  • Watch 3 – 6 hours of 30 Rock
And I will cap this off by saying – I am LUCKY.  I get to get up and putter, take a short walk, putter again.  There are about 350,000 of us in the US with this Thing.  Many, many more far worse off than me.
______________________________________
A relapse is a clinically significant event (meaning that it has outward signs and/or symptoms) caused by an MS lesion on your brain or spinal cord. It is either a worsening of symptoms that you already have, or the appearance of new symptoms. Relapses are also referred to as “exacerbations,” “attacks” or “flares.”
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5 Responses to “Wakey Wakey!”

  1. Michelle September 30, 2011 at 3:31 pm #

    You are my new Funkmaster.

  2. akopsa September 30, 2011 at 5:11 pm #

    we want da’funk…xoxo to you…a

  3. TCM October 1, 2011 at 11:42 pm #

    Wait, wait! Because The Cure is so amazing, don’t forget that you may also get painful acne like you haven’t had since you were 17 under that Lady Beard. And you might also gain 15 or 20 pounds, which does wonders for a self-esteem that may (just may) be under duress. But as the fatigue fades, The Cure may also give you a burst of energy such that your windowsills will be cleaner than you have ever dared imagine. So there’s that….

  4. akopsa October 2, 2011 at 2:58 am #

    I forgot about the crippling acne – and the weight gain! I can’t. It’s just unspeakably glamourous.

Trackbacks/Pingbacks

  1. Glorious | Andy Kopsa - September 30, 2011

    […] took walk today (which is kinda a big deal for me these days: read all about it here) and came across this near Grand & Mott Rate this: Share this:ShareRedditTwitterFacebookLike […]

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