Sunday, February 26, 2012


Today has been an "ARE YOU FRIKKIN KIDDING ME?!?!" kind of day.  It's been so ridiculous I just can't help but laugh.  Mostly. The whole thing is just...crap.  It's really the sort of thing that makes it incredibly difficult to keep getting back up and trudging on.  I've gone back and forth from feeling sorry for myself to gritting my teeth, to wanting to scream obscenities, to being able to laugh about it.  It's been exhausting.

I've mentioned before that I've been having trouble with my Copaxone treatments.  The giant, angry, red, hot injection site welts have still been happening.  They're still just as bad as the first time.  I'd been procrastinating having the nurse come to show us how to do the shots without the auto-injector.  It may sound like a fairly simple and straightforward thing because we've all gotten shots plenty of times, how hard can it be?  Well trust me, when it comes to doing your own, you want someone there to show you exactly how to do it.  It's absolutely terrifying.  I had hundreds of scenarios in my head of the things that could go wrong.  The nurse came yesterday morning and I swear I almost had a panic attack.  The nurse, Cory, and I all sat at the table and went through the steps and talked about it.  My heart was racing and palms sweating.  Basically, you pinch your fat, stick the needle in, and push the plunger thing, then pull the needle straight out.  I sat there for a few minutes with the needle hovering above my pinched fat and wanted to throw up.  This is a completely unnatural thing to do!  It's absurd to me that I could actually look longingly for the comfort of the blasted auto-injector.  Kind of funny, really.  It actually crossed my mind that maybe I could just get used to the welts.  I don't know why it's so much more frightening than the first time I did the auto-injector.  Maybe it's because it was easier to forget what it actually was when it was in the bulky injector?  When you're holding a syringe in your hand and can feel the cool glass and see the actual needle, there is no mistaking what you're doing.  This is a shot.  No one likes shots.  And I'm supposed to be ok doing it.  To.My.Self.  Ugh!  The idea of the welts was starting not to be so bad at that point.  I could just wear 3/4 length sleeves or not do them in my arms at all!  Yeah!  Then I remembered seeing myself naked in the mirror the other day after I got out of the shower.  I felt really sorry for the woman in the mirror.  I'd scratched a welt on my stomach raw in my sleep.  So that was swollen, red, and now raw.  Both thighs had swollen red welts the size of oranges from that day and the previous day's injections and bruises just as big from last week's welts. So, I did it.  I poked the needle in and administered the shot (almost) like a champ.  I am pleased to report the injection site did not swell up into an angry mass of heat emitting crud afterward.  I still have about a pea sized knot there, but it's 345774984 times better and not itchy.  I did this injection in my stomach since it was the easiest.  Again, yay for fat!

Today I must have felt adventurous.  Or stupid.  I'm not sure.  At any rate, it seemed like a good idea at the time.  I decided to try administering the shot in the arm since that is a little more tricky.  My reasoning was that I'd do that while Cory's home in case I had a situation or something.  What makes the arm tricky is you have to pinch the fat and, unless you have 3 hands, ya kinda have to improvise.  The nurse showed me to sit sideways in a chair and put your arm over the back of it and kind of roll your arm towards your body so it like lays the fatty part of your arm out for you.  I made up my mind beforehand that I was going to be brave and just do it quickly and get it over with.  And I did!!  Almost immediately, though, I realized something was wrong.  My arm started twitching and really hurt incredibly bad.  Apparently, I went too far back and nicked the muscle.  Hence, the wanting to scream obscenities.  It really frikkin hurt.  BAD.  I ran around the house a few times, debating beating my head on the wall, hoping the pain would subside after a few moments.  I equate this to doing the pee pee dance when you really gotta go.  It really serves no purpose other than to give your body a distraction.  It didn't help.  Just keeping it perfectly still is the only thing that helped.  So, after struggling through breakfast, I sat on the couch with my arm propped up and a cool pack on the afflicted area and read my book.  I sat this way for several hours.  I don't even have the words to describe the pain.  It hurt from my elbow to my shoulder and the small amount of movement I could muster brought tears to my eyes.  We went for a walk this afternoon and I'm convinced I looked like a stroke patient with my arm plastered firmly to my body.  So, yes, I find that to be so completely ridiculous that I've now traded the welts for THIS?  ARE YOU KIDDING ME?!?  I was completely unable to use my right arm for the better part of the day.  This isn't even the MS beating me down, it's the treatment.  How messed up is that?  Yes, I get it, I clearly administered the shot wrong.  I completely understand that.  And that is terrifying as hell!  There is no room for error.  That little tiny needle is incredibly unforgiving.  That is really incredibly difficult to want to go back to. 

I am now able to use my arm again with minimal pain.  I called the Copaxone folks and left a message for the nurse explaining my situation.  The on call nurse called back and advised yes, it sounds like I hit the muscle.  She said if I can't pinch 2 inches I need to go in at a 45 degree angle instead of at 90 degrees.  Ah yes, I remember the nurse mentioning something about that in the training.  I thought it was a matter of personal preference, not necessity.  Ok.  Alright.  Got it. 

Now that my arm is feeling better I can look back at the day and giggle.  It's not funny in any normal sense of the word, but it's just so...the opposite of what's supposed to happen.  You get shots to protect you or make you feel better, not to incapacitate yourself.  I will try this again tomorrow and if it doesn't end in complete paralysis I will consider it a success.  That, really, is the MS experience.  It's learning to redefine what you consider a success.  It's overcoming challenges.  It's conquering demons.  It's doing the bullcrap even though you don't wanna.  It's getting over whatever hump has been thrown in your path.

So, aside from the whole "not being able to move my arm all day" thing, I'd consider the manual injections to be a success.  I now have 2 injection sites that aren't swollen, angry looking, or itchy. Woo hoo!!

Wednesday, February 15, 2012


Tonight I ran into a friend from way waaay back.  The encounter, though brief, was something I didn't know I even needed, but now I know I did.  It brings tears to my eyes and chills down my spine to recognize that this blessing was over a decade in the making.  I haven't even seen him in over a dozen years.  He was the roommate of a guy I dated.  A few years ago he discovered we both played in a local darts organization and we corresponded a few times and are friends on Facebook.  A few weeks ago, he bumped into my husband at a dart event (I wasn't there) and he and Cory chatted and my MS came up.  Come to find out he has it too!  I never knew!  He seems so...normal!  He was arriving tonight just as I was dropping Cory off for darts and I am at a loss for words to describe the impact seeing him had on me.  I have spent countless hours reading message boards and blogs and informational websites and articles written by and about people with MS and it's freaking scary, man!  The disease is a nightmare for a lot of people.  And that's what I'm reminded of a lot when I go searching for something seemingly harmless.  So, seeing this man driving himself around, getting around on his on two feet without any hindrances, looking all!  Yes!  That's what I needed!  I needed to see with my own eyes that MS people can look just like everyone else.  I needed to be reminded that even if bad spells come, they can pass.  I needed to be reminded that sometimes out of our heartaches can come blessings. 
This MS thing has caused me, my family, and my friends a lot of heartache.  I don't know what it will be or how long we'll have to wait, but I'm certain something good will come of this one day.
I had to chuckle a little as I proof read this.  As I got to the end of the first paragraph it reminded me of those clips you see on National Geographic of someone holding a mirror in front of a monkey and finally the monkey realizes it's herself in the mirror.  That's exactly what that experience was like, honestly!  It's like finally seeing myself and realizing I still look all normal-like.  Hey!  Maybe I'm ok too!

Saturday, February 4, 2012

A weight has been lifted!

I had my annual brain MRI this week (results are pending).  As I was laying there, I thought back to my first MRI experience and how much has changed since then.  There have been so many learning experiences along the way, some more painful than others.  We have bumbled along, backtracked, crashed, and beat our heads against the wall countless times.  There's no road map for this and even if there was, I'm positive we'd have thrown that away and blazed our own trail.  So, here are a few nuggets I've picked up in the last 18 months: 
  • Doctors are human and will be wrong now and then.
  • Never, ever, ever, EVER go to a specialist alone, even if you think it's just a routine visit.  Just don't!
  • Laughter really is the best medicine, just not while you're trying to hold your tinkle.
  • Not everyone in the health care system actually cares.
  • Sometimes you have to throw a fit to get people to listen.  Make sure you mean what you say.  And be prepared to apologize.
  • If you're a patient in the hospital, accept the fact that you WILL be embarrassed.  They know it, so just embrace it and move on.
  • Doctors don't always have all the answers.  "We don't know" will just have to suffice.
  • Don't ask "what's that smell?" in a hospital.
  • It really and truly can get worse.  I promise.  It can also get better.
  • It's OK to tell a doctor no.
  • If you and your doctor can't effectively communicate, find a new one.  He/she is the one with the knowledge and should be willing to listen to your questions and answer them without putting you off.  Remember, YOU (and your insurance) are paying him/her. 
  • You can be hopeful and realistic at the same time.
  • It's OK to feel sorry for yourself now and then.  It's not weak.  It's human nature.  Grieving for oneself should be expected.  Just make sure you pick yourself up and move along.
  • Take care of yourself as well as you'd take care of your children.  They need you!  You're capable of more than you think!  Don't underestimate yourself.  Ever. 

We're in the middle of a big change right now.  Let me preface this by letting you know I am a fairly predictable person.  I don't like surprises.  I like order.  I like things planned out to the nth degree.  I am very cautious and make very well thought out, calculated decisions with backup plans and every imaginable scenario covered.  I do NOT fly by the seat of my pants.  But, after seven years at my job, due to a long string of ugly events, Cory and I agreed it's time for me to move on.  So, I quit my job this week.  I don't have anything else lined up either.  EEK!  This is just what needed to happen though.  We have some rough backup plans, but nothing definite.  And I'm OK with that.  I am very much at peace right now.  In the weeks leading up to this decision, I'd been extremely stressed.  I've fully expected some sort of flare up to come join in the fracas.  There was one incident about two weeks ago, but we're not sure if it's the MS, an anxiety attack, or being sick (allergies + congestion).  I had this horrible sensation in my chest and diaphragm area.  It was like I had a string around my insides and someone was cinching it.  It was excruciating.  It scared the dickens out of us.  I went on to work and eventually the pain subsided.  I'd really like not to experience that again.  I also had a migraine yesterday.  I knew that was going to happen.  I talked to my doctor about them a while back and expressed my aggravation that my migraines always happen on the weekends so I wondered if there was something in my home that was causing them.  He explained that it sounded like they're brought on by stress, so once the stressful situation is out of the way, the body lets it's defenses down and whammo!  Migraine City!  Lovely.  He also gave me a prescription for what I call my "chill pills" to kick the migraine's butt.  Use to, I'd suffer through them with a cool washcloth over my eyes for the entire day.  Now, I take the chill pill when I feel it coming and it knocks me out for a few hours and I wake up feeling human.  I'm not a huge fan of taking medications but if you've ever had a migraine, you understand it is absolute misery.  I've tried everything imaginable.  I am soooo incredibly glad my doctor gave me that.  I'm hopeful that's the worst of what's going to happen.  The stress has been lifted and I feel completely revived and like a new person.  I feel like I was living in darkness for a long time and didn't even realize it, and now I'm back out in the warm sunshine.  I'm excited!  It feels good!