Wednesday, 28 November 2012

In My Face

Just feeling kinda crappy today.  Like it's always staring me in the face.  Too much time to think I guess.  Actually it's not even that...I'm not really sure why I feel so crappy.  I've been doing good mostly, but this past whole week has been tough.  Constantly trying to feel motivated, to not think about the what if's.  Feeling kinda lonely....doesn't help when I am not working.  But at the same time it's stressful to think about working.  I just can't seem to win.  Just feeling sad. Thinking about what it will be like to have to inject myself with meds everyday. I guess it will be staring me in the face even more then. I consider myself pretty strong when dealing with issues, but this is hard...really really hard to have a great attitude all the time.  To not feel sad, depressed, just sucks.  Just one of those weeks I guess.

Monday, 26 November 2012

Our System

I finally found out that I can receive coverage, or at least 80% coverage, for my meds.  What is so frustrating is how hard it was to figure out.  The hours on the phone, the number of times I had to call back to the same place, yet talk to someone different to finally get the correct information.  I couldn't access the right information on the internet, our benefits company couldn't access the right information from Pharmacare.  I finally phoned for the second time to find out that they could possibly cover it under some Part 3.  Why can no one access that info?  Especially our Insurance Provider!??

I have been on EI for 7 weeks and still not been paid!  Thank goodness I'm not a single mom who needs the paycheck...Now!  I can't receive any help from EI in the fact of retraining for a job because I am on sick benefits and the goal is to get better.  Well news flash you don't get better from MS.  So I need to get laid off and then I would need to guarantee that I could work permanent full time...which is impossible to do.  So there is no help there either. 

I am thankful for our "free" healthcare but some parts of our system desperatly need help. When you really need something how come it is so hard to get?  And why so expensive!?  $20000-$40000 a year!!!  Even at 80% that's still a ton out of pocket..

Monday, 19 November 2012

Slowly But Surely

Today I had my appointment at the MS clinic in Winnipeg.  I feel like I am SLOWLY getting closer to answers.  I still don't know any more than I did before I went.  I had to do more tests in his office.  The same ones I've done before in different doctors office.  Went for MORE blood work and a repeat of the stuff I already had done.  Then was told that "yes" once again I have MS.  Thank you for telling me for only the 3rd time now!  Finally I think we should be getting somewhere!  I have ANOTHER appointment in about 3 weeks to talk about the different drug options, only to realize that we may not be covered by our insurance.  I pray that that is not the case or else...we will have some bigger issues, especially if I'm unable to go to work.  That would be a HUGE cut for us financially, like lifestyle changing.  Anyways that's a lot of ifs right now and we will hopefully find out tomorrow morning, so that isn't too long of a wait. 

Matthew 6:34

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Saturday, 17 November 2012

Mind Games

You take two steps forward, only to realize in the morning that you've gone one step back.  One step forward....two steps back.  Back and forth.  Just when I think things are getting better and I might come out of my relapse, I wake up and it's another step backwards.  Still waiting to feel normal.  Thought I was doing really well, but now today my hands are worse agin and I feel a bit off kilter.  Not as bad as before but still a step backwards.  It's been over 2 months now.  Maybe it won't ever get better....

Wednesday, 14 November 2012


Yesterday my oldest was picked up from school because he got the butt end of a hockey stick in the eye and the school wanted us to take him to the doctor to get checked because his pupil wasn't dialting properly. What you must know is that with 3 boys we have been to the doctors NUMEROUS times for one thing or another! Needless to say I was not too worried, but thought that this was gonna give him a black eye at most.  Once we were at the clinic, the doctor proceeded to do a bunch of tests, checking for this or that. Cole was complaining that his eye was stinging and that now things were getting blurry. The doc continued to check for stuff.  He put drops in his eye that made it sting more, swabbed it, plus numerous other things.  Then he told us that we needed to go to the hospital because he couldn't see his eye properly and they needed to give him some drops in his eye that they didn't have at the clinic.

As we were walking across the parking lot to the hospital I actually started to worry. Really worry. I thought "what if something is actually wrong"?  At this same moment Cole starts to tell me that he can't see properly and I told him that it was all okay and that anything that could be wrong would be fixed and that nothing would be permanent.  This was not only reassurring for him but for myself as well.  I had a brief moment of actual worry. What if it had been worse?  What if he lost sight in his eye because of some freak accident?  And in that moment I realized that I would take any sickness if it meant that my kids would never have to go through any kind of serious trauma. It was good to have a moment where everything was put into perspective. 

Friday, 9 November 2012

Heartache and Joy

If you have kids you know all about the difficulties of raising kids, and the enjoyment.  There are moments when you realize that you may actually be doing something right!  Without these special moments I don't know how many of us survive these 18 years and more of child rearing.

Since the beginning of this journey, I have wondered how will this impact or affect my kids?  As a parent (and I believe especially a mom), you hate to see your kids hate it. Fathers seem to have a strength about them that allows them to discipline more easily.  Mothers hearts ache just a bit more when they know that their kids are hurting. Mostly because we on average have more of an emotional makeup. 

Our youngest is in grade 3 and for the most part oblivious to the matter at hand.  When I tied his skates this past week and his goalie pads he exclaimed very loudly and excitedly, "My mom is awesome!" "She's the best!"  "My mom's a pro!" Over and over.....and over. This was slightly embarrassing and as I try to tell him to hush he just keeps making these proclomations loud and clear for everyone to hear.  What I realized was that he does not understand ANYTHING about what is going on even though we have tried to have a discussion with him.  He just thought that I was uncapable of doing this task before because he thought I simply didn't know how!  I did know how but because of the lack strength and feeling in my hands I was unable to do so.

Our middle boy is in grade 5 and as I dropped him off for piano lessons I simply asked him if he understood what was going on and he proceeded to tell me "yes".  So I asked him to tell me what he knew about MS.  He told me, "Well you lose some of your feeling, like in your hands, but you don't die from it, so it's okay!"  Straight and to the point I guess!  This is my factual and to the point child so it wasn't all that surprising.  He processess the information and comprehends the logistics of the disease or at least partly.

Which brings me to my oldest who is in grade 7, who casually made a joke in the morning about being paralysed all over when he had to carry groceries for me because I couldn't.  Well he realized real quick that it wasn't a tears came into my eyes.  At that time we didn't know a lot about MS but I knew that you can lose mobility etc.  He and I sat on the couch and he had raw fear in his eyes.  Something I will never forget...something that makes you cry even more, which is hard because you want to comfort and not have him be fearful of the unknown. I told him how the disease affects everyone differntly and joked that I wouldn't need a wheelchair until I was an old grandma, trying to lighten the mood.  I told him that it doesn't happen overnight and that there are good bouts and bad ones but that everything would be okay. Over the next couple of weeks he had a couple of bad days because he is the one who worries, but worse he is not a talker!  He keeps everything in until he explodes.

What I noticed over the next bit has been the part that gives me joy.  He was leaving the house for school and said "Bye mom. I love you."  What?  Did my ears deceive me?  This is not my lovey dovey child.  No that is the other two, but definately not this one!  Not only did this happen the one day but almost every day since!  He also came to find me in my bedroom one night because I was actually heading to bed earlier than him, to tell me goodnight and to give me a hug.  Usually I get the arm around the side or a lame version of that, but definately not a full out hug, one that he actually went searching for!  Now he hugs me randomly, says he loves me before school and actually will do chores without complaining a lot of the time.  He still fights with his brothers and he has been more irritable lately, but he's talking!  Yes it always happens to be when it's bedtime but talking.  There is a maturity in him that I believe was sparked by all of this.  I know it would have come eventually lol but I'm glad that when it comes to other people he seems to have a differnt awareness.  This is challenging because he is irritated with kids at school how they always goof around and I'm not saying he doesn't make mistakes because he does.  Even this last week he went and told a kid something that was pretty mean, but what impressed me was how he handled it afterwards.  He pulled the kid aside, and gave him a proper apology, not some quick "I'm sorry" cause he had to, but a genuine apology telling him what he did was wrong and mean etc.  He even had to apologize to an adult about the same incident and did so without us knowing.

It's the moments like that make me realize that we are doing something right as parents. As they get older there will be more joy and more heartache, and in the meantime I pray for lots of wisdom! 

Monday, 5 November 2012


So I've had a relatively good week.  The swelling in my hands is down.  The numbness is a bit better in my hands and I can type much better!  I have done dishes and laundry today and tied skates this past weekend.  But this blog isn't about all of that.

It's about my relationships, with God, and with Shawn and my boys. Yesterday at church was a biggy for me.  I still don't know how I feel completely about this whole thing of God healing people.  I believe He can but I don't believe He always does (at least in the way we expect).  And not because people didn't pray hard enough or have enough faith, but just because there is a purpose for things.  I don't believe God gives you a sickness, but rather allows that to happen to you....just like Job.  What I've come to realize though is that I still need to pray and ask God to make me better.  However, that may look different than my first instinct of a complete recovery.  I'm not saying God can't perform something miraculous, but healing may be in the form of my relapses being further apart or them not being as severe.  I may not know what they could look like but if I don't ever pray and ask God to help then I can't expect anything.  I guess what I'm trying to say is that I still feel like God can perform a miracle but I have a responsibility to maintain a relationship with him and continue to pray and seek out His direction in all of this.

I have been very stubborn the past couple of months.  I told myself that I would still live my life and accept what has happened but I would not worship God to the fullest, because if He wanted to He could have prevented all of this. Everyday life was good. However going to church or praying about things other than my situation was too hard to do.  How do I go to church and sing about how awesome God is and how He heals and is there for us when I don't feel any of that.  I actually was just being stubborn!  Consciously choosing to not open my bible or sing a song because if this was going to happen to me then I wasn't going to give God my all.  Physically turning the radio station to a secular station because I didn't want to hear about wonderful He is.

I was angry at Shawn for not being bothered by this more!  Everyone kept asking how Shawn is handling this and in my eyes it was almost too perfect!  I know it's a good thing and I'm blessed by him not running away or being scared of what's going to happen, but I felt as if I needed him to be bothered by it to show that he cared.  I even asked him last night if he had "even googled it all!"!!  He told me he had in the beginning and I was ticked that he didn't google it more!

Angry is how I was feeling and with that came stubbornness.  So yesterday I was broken and today I picked up my bible and didn't know where to start. James popped into my head and this is what it said...

James 1:2-8
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. That man should not think he will receive anything from the Lord; he is a double-minded man, unstable in all he does."

I believe our family needed yesterday. I want our boys to have a relationship with God and I want them to see Shawn and I have one too. We were starting to go our separate ways, letting the business of life happen and now I feel as though we are back on track.  Today is Monday and it may be a long week ahead but my focus has changed back to where it needs to be.  I know I will still have days of struggling with being angry but it is like that in any relationship. I need to press on though and fight the good fight.  As our pastor said yesterday, "I'm sick and tired of being sick and tired".  I needed to come to the end of myself yesterday so I can have a new beginning.

Friday, 2 November 2012

Small Accomplishments

So I'm feeling a bit better after the steroids.  Not nearly as dizzy and the upper body numbness is almost gone, however my hands feel the same.  But......I did up my boys goalie pads today and tied his skates!! My hands felt like they were on fire after but I did it!!! I have noticed that there is more strength in them but with that comes aching and they feel really hot after I do something.  It's still a lot of work accomplishing such small things, but it felt good to do it. 

Come Sunday I am on my own as my parents are heading back home.  I have only been on my own for about a week in the last two months but I need to find out for myself how well I can do on my own.  If it gets to be too much I do have my mother in law who is willing to come out, but I need to just see how I do on my own for a bit.

I also am working the canteen tonight so that will be another test, but I'm looking forward to it.  I slept until almost 1:00 today because I was so tired, but obviously I needed it and I knew I would be out late tonight, and so far I still feel pretty good. 

So that's it for now.  Thanks for all the support!