Monday, 7 January 2013

New Year Update

The New Year has begun!  The kids are back at school and quite a bit has happened.  We made it through the holidays though and now it's time to take down the tree.  Yes it's still up! LOL 

So over the holidays I started taking my injections.  I chose Copaxone because it has almost no side effects but it is a daily injection.  I remember receiving the box in the mail which basically included all of the packaging like carrying cases, needle clipper, info dvd, etc.  As strange as this may sound, it was hard to see that box.  For one it was way more involved and bigger than what I thought.  There was even a box with a key to lock your meds in if you have little kids or people who might get into it.  It was just another step to saying that this is real.  I remember feeling angry as I went through it's contents.  However taking the actual needle when the time came didn't seem to be as disturbing.  A nurse from Matlock came out and trained me on how and where to use the injections.  We practiced on a special piece that was included in the package I received.  Surprisingly the needle itself doesn't even hurt, but the medicine does once it's in.  That first day was extremely mild and since then there are times when it hasn't faired quite as well and it hurts quite a bit or will get swollen and red, but that is still all normal.  So overall this seems to be agreeing with me.  What people don't know or don't understand is how this medication works.  Many people ask me if I'm feeling better now, even my own doctor asked me this question:)  These meds only reduce your chances of having another relapse.  It DOES NOT improve your symptoms!  It may help some people a bit but that is not the main reason for the drug.  It reduces the relapse rate by 30% and reduces the severity of a relapse if or when you should have one.  The downside is that it takes 6-9 months to get into your system and almost a year to really start working. 

What does that mean for me?  Right now I am on another medical leave, as I can't seem to beat this fatigue thing!  I also have lasting remnants of numbness in my hands and that worsens when I over exert myself, which doesn't take much!  I was having sharp shooting pains in my hands this past week and I get dizzy a bit when I'm overtired as well.  The problem is consistency.  There is none. 

I am thankful for a doctor who understands and is extremely helpful.  He knows what it can be like and understands that fatigue is a very real issue.  I try to make life at home as normal for the everyone and really need to work on making use of my time when I feel up to it.  Shawn and the boys have been awesome and it's a bit scary to see this as a new normal for life, but I'm sure we will adjust as we have so far. 

Right now we need prayers for finances LOL I have two weeks of EI and then I need to get approved for disability through work in order to get subsidized for the rest of my medical leave.  EI only covers you for 15 weeks.  And for the insurance company to approve our medication.  We received a $0 refund from the medication, but I am hopeful that it is just a matter of paperwork that needs to be worked out.  Having said that getting approved for disability subsidy and sorting things out with the insurance company can be a timely thing, so we need to cover our finances until that is all sorted out.

Thank you all for your words of encouragement, your thoughts and your prayers!  Happy New Year:)

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