Tuesday, 24 December 2013


Thinking about last year.  What was it like?  Very different.  This time last year, I was in the middle of a relapse, unable to write, clean, cook (properly).  I don't really remember how I got through making Christmas dinner, but I did.  We were struggling.  With a recent diagnosis, adjusting to one income, (as I wasn't receiving medical leave), paying for meds, and just overall life.  It was hard on everyone.  Our friends and family showed their outpouring support through many ways.  We were in a valley.  A valley where the mountain seemed almost unsurmountable.  I obviously found this extremely difficult but so did everyone else around me.  And that's what I forget sometimes.  How does my MS affect those around me?  Especially the ones close to me.

Do they forget? Maybe at times but not completely.  I see it in my dad especially.  We don't see each other often since he lives in Thompson but it's the goodbyes.  There is always a moment where he wants to find an answer.  To have a reason as to why this is.  As a mom I can't really imagine what it's like to be in my parents position.  What if it was my kid?  What if they got sick?  Maybe I can imagine, but it's not a very comforting thought.

Which brings me to Christmas.  How you ask?  Well Christmas is a time to be thankful and to remember what Christ did for me.  How did his mom, Mary, feel watching him be hung from a cross.  Yes Christmas is about Jesus' birth but without his birth we wouldn't have the salvation we can have if we choose.  I have comfort through Jesus and I hope that during this season you can take time to reflect and see the freedom and peace you can have through Jesus too.  And remember the reason for the season.

Thursday, 7 November 2013

Starting from Scratch

In my last post I stated that I was starting my journey again but the right way this time.  What I didn't realize that day was how literal that comment was actually going to be.

I say a new neurologist yesterday.  My last one was awful and never discussed anything with me and brushed off everything I said!  This one was amazing!  I was at my appointment for over 2 hours which is more than double of any other appointment I had ever had. 

As he was doing all these tests on my he made a side comment of how I should've been left handed.  Now that might not seem like much but that was HUGE to me!  My right hand functions but for me it's definitely not the same.  For him to notice that right away and not dismiss it like the other neurologist was such a relief.  I asked him if it would get better and he was very truthful and told me that at this point not likely.  I'm okay with that.  I just wanted someone to understand. 

He then proceeded to tell me about my latest MRI.  Long and short is that I have very few lesions on my brain and they are older ones. My spinal cord however is not so fortunate.  I have new lesions, bigger ones, and at the time of the MRI two of the spots were "active".  His concern is that the spine only has so much room that it can afford.  And the really bad news is that the meds aren't working.

I've been taking them for almost a year, and for nothing.  Now I have to start all over with a new kind.  I decided on Rebif.  It's taken 3 times a week with skin irritation that looks like bruising that lasts from a week to months.  At 3 times a week I will probably always have what looks like bruises.  Next is that I need to take a 12 hour Tylenol before and after every injection as it causes flu symptoms of fever, chills, and aches that last for 12-24 hours.  This again is 3 times a week.  This lasts for 3 months and then you are weaned off of the Tylenol over the period of one month.  If after that I still have flu symptoms I have to try a new drug.  The last two also cause flu symptoms which is why I had chosen Copaxone in the first place.  It had almost no side effects. 

With this I also need to have blood work once a month for 6 months and then every 6 months after that because it can cause liver issues and affect your white blood cells.

So when I said I was starting over I definitely did not have this in mind.  It's a huge setback emotionally and physically.  I'll be starting this in the next 2-3 weeks so if I look like crap I probably feel like it too.

Sorry but I'm feeling kinda ticked about the whole thing.  Ahhh maybe my next post will be more encouraging. 

Monday, 4 November 2013


Through it all I've never been broken until now.  Broken before the Lord.  Sorry that I've cut him out.  Trying to fill life with stuff.  Hockey, Facebook, coffee.  If I was busy I never had to really deal with it.  Mad, confused.  Looking for meaning, purpose.  Trying to figure things out on my own.  Yes I've had high moments, but that's all they were.  Moments.  Knowing what I should be doing.  How I should be feeling and acting, but never really making God the center.  It kind of feels like I'm starting all over.  But this time I'm gonna let God help me.  So I'm asking you to pray for me while attempt this journey a second time.  The right way.

Tuesday, 22 October 2013

It's Been A Year

As I look back to beginning of my blog it's easy to see how far I have come.  This past weekend marked a year of being officially diagnosed with MS.  I'm thankful I was busy that day.  Thankful I didn't have time to think about it.  It's still in many ways a haunting day, a day you never forget.  You never forget that feeling of hearing those words, of having your life change.  In many ways it's like the day your first child was born, or your wedding day.  They are milestones and you never really forget how you felt in that moment.  The only thing is that it's not a happy joyous memory.  It's a memory that as of right now still brings pain and sadness.  I'm not sure that will ever change, but then again there are many things that if you would have asked me a year ago, I wouldn't have thought they could change either.  But they have.

I've learned my limits.  I sometimes push too hard.  I sometimes can do more than I think I can.  My kids have started to adjust.  I've stopped feeling sorry for myself....most of the time.  And I see just how far I have come.  My life is different, others may forget, but I have hope and I will not let myself forget how far I come in this journey.

Monday, 23 September 2013

The Things I Know

Sunday was a good day.  I had two people who came up to me and told me I looked great!  Yup that was a nice way to start the day! LOL  But that wasn't the only reason it was a good day...I realized or was reminded of some truths that I know.  What are those truths?  God made me. Well duh you say!?  No but God made ME!  As an individual he put thought and effort into making me!  And I am fearfully and wonderfully made.  Psalm 139:14. 

This isn't something that I often think about, but even this wasn't what struck me the most.  God has a plan and purpose for my life.  What is that?  Right now I don't know.  But here's the kicker...His plans for my life NEVER changed just because mine did..........He gave me talents and gifts and I still have a life that belongs to him.  I don't know what that plan is, but I need to prepare myself for it and search for what God wants me to do. 

I've put limits on myself.  Being apprehensive to commit to things because I'm afraid I will let people down.  That I'll have bad days or weeks and will have to back out of those commitments.  I've never let this disease tell me I can't do something at all but I have let it stop me from making anything a permanent decision because of the "what ifs".  I need to ask God what he wants me to do and trust that that is the best plan for my life.  My gut tells me that it's something more than going back to work to just make money so we can have more stuff, but then again maybe that's just my desire right now.

I also know one more thing and that is through Jesus I have can have peace.  That is something that no person can give me. 

Philippians 4:7 NLT
Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

Thursday, 5 September 2013

Am I Going Back To Work?

This time last year I was a couple days away from having my life change.  This time last year I was at school with my colleagues, sending my kids off to school for another school year, enjoying the last of summer.  But two days later I ended up in the hospital for a week, had surgery to have my gall bladder removed only to wake up with numb fingers, which quickly escalated into what I now know as a major MS relapse.  A month later I had an official diagnosis and it's never been the same since. 

It's this time of year that I was dreading.  Hearing the never ending questions of "Are you going back to work?", "When are you going back to work?".  The answer always was I'm not, now I'm at the point of I don't think so.  It's stressful.  To have to think you may HAVE to go back, but then on one hand thinking how would that even be possible?  What's worse is the feeling like I need to explain to everyone why I'm not there.  I look normal.  I really wish there was something you could see, something to separate me from the rest of society.  I'm tired of explaining, tired of trying to come up with some answer that sounds legit enough to answer everyone's own judgment and opinion.  It's not that I don't want people to care, but ask IF you care, not because you need an answer to fill your never-ending curiosity.  It's not something I can explain and if my own family has a hard time comprehending it I doubt I'll be able to have a sufficient answer for the general public.

Saturday, 17 August 2013

"New Year"

With only a couple of weeks left until school starts I find myself trying to stay occupied.  The garden stuff is coming in and hockey camps are starting too.  I really find that September is the "new year".  Everything starts back up and life seems to gain a routine again.  I have a couple of volunteer jobs set up for the fall and hopefully that will help cover some time.  I'll probably join some group at church and hockey will fill the evenings.  I can't believe I'm saying this but I'm looking forward to winter! 

It's kinda funny but I'm starting to fall back into the routine of being a stay at home mom again.  I think I actually kinda like it.  I enjoy it more than when my kids were babies.  See I have this "Freedom need" and with the kids gone to school I can have a few hours of where I can do the things I want to without tripping over little bodies.  lol  I feel like I'm more productive and with my new KitchenAid mixer it's easier to cook things.  I am finding joy in providing for my family other than financially.  It's just taken a bit to get back to that mentality. 

Tuesday, 23 July 2013

Getting There

It's been almost a month since I last blogged and I'm feeling a bit monotonous.  I apologize if it feels that way to you to but in the end I guess that's how life has felt for me the past year. 

We had a really good trip out to Ontario.  It was very hot and humid but I got through it.  We planned a day off in between each day pretty much and even the long days only turned out to be about 4 or 5 hours of actually being at the activity.  The longest day was the one that I thought would be the easiest!  Ha was I in for a surprise!  Thankfully that was our very first day there so I was feeling at the top of my game.  I did realize that trips like Disney World or the whole idea of sight seeing and travelling will be very difficult if we ever get a chance to do those things.  It's the walking.  I can't go more than a couple of hours without exhausting myself.  When we went to Niagra Falls we paid double for parking because it was too long of a walk for me to go from one destination to the other.  But all in all it was good and I'm very thankful that I had no major issues before or during the trip! 

Since we got back I've really tried to settle into the whole "housewife" role.  Surprisingly it's been pretty good.  Maybe the fact that it's summer and the sun is shining helps.  Or maybe it's because the kids are off and there are always kids coming and going.  Whatever the reason it's been nice.  Nice to feel useful and productive.  Life definitely isn't the same but I think I may finally be adjusting.  It's a work in progress but I'm getting there.

Tuesday, 25 June 2013


In 2 more days I find myself at the end of yet another school year.  The difference this time is that I have not worked.  It has been almost a year other than 3 days in September when I thought I would be going back.  I'm not sure I'm used to the idea or not.  There are many good things but the inner struggle of not having the option to go back is hard.  I find myself wishing it could somehow work out, but then thankful that I get to be here for my boys.  It's just that in some ways I feel like things haven't changed that much from a year ago.  I'm still struggling with this whole thing and I feel like I should be past it. Will there ever come a time when it isn't hard? 

We are going on a vacation for a couple of weeks and just the apprehension of being well enough to go and wondering how I'm going to get through the longer days that require lots of walking are worrisome.  I just don't want to screw it up by not feeling well or not being able to handle the days.  I also realize that I hate the hot weather.  Hate it.  The "experts" talk about an intolerance to heat and to some extent I knew it was an issue but after being outside for a brief time yesterday, I'd have to say that Shawn is right.  I definitely can't handle the heat like before.

Overall I'd say I'm just very anxious to go.  Shawn has been working long hours and Saturdays just so we can take this trip, but it's one that we need.  We just need to get away and relax and have fun together as a family.  That's why I am really afraid of ruining it by getting sick.  It's been a while since the last relapse and I know another one is coming...but when?

Thursday, 6 June 2013

Who Wants To Have Coffee?

Yesterday I was at Cole's track meet.  It was almost a perfect day out!  I sat in the bleachers and watched.  Nothing too over exurting.  I didn't even have to drive.  I came home, made some simple supper, took my son to his new schools open house and then went out and transplanted some plants for my garden.  Then I came in and was sooo tired.  My legs ached my arms ached.  And it's something like hitting a brick wall.  I didn't think I was that tired til it hit. 

I'm not sure I'll ever completely get used to it.  Maybe I'll start to expect it, but in my eyes it was a pretty easy going day.  I was up at 6:30 though and was on the go the whole day but still.

This was the 3rd track day in 2 weeks and there are more events for the kids, just because it's June.  I am fortunate enough to be able to go to all of these things now that I haven't been working.  There are many days though that I still have a hard time with that concept.  I like the thought of being home but I like the thought of working too and it's hard to grasp my head around not having a choice.  Maybe it would be different if there were more stay at home moms.  But most people work or stay at home but have little kids.  Which is okay too but I kind of feel on the outside having kids in school and staying home. Boy I miss the hockey season already.... because it was my social life.  Now I have to work a lot harder at having one.  People aren't as readily available to help me fill my time:) 

Soooo if you're bored call me!  LOL  I will do coffee almost anytime! 

Friday, 24 May 2013

The Courage of a Man

3 days from now, it will have been a year since the doctor told me that it looked like I had MS.  I remember walking out of that appointment dumbfounded. No emotion, just unbelief.  I got into my vehicle and proceeded to drive home.  I wasn't half way home from my 4 minute drive when it hit me.  I bawled so hard it was hard to see the road.  As I write this it brings back all of those feelings of being scared.  Very scared.  The unknown is very scary.  I didn't really know what MS was but I thought I was gonna eventually be paralysed and wouldn't be able to walk or feel anything from the waist down.  It never even occurred to me that I might have other problems waist up.  I just didn't know much about it. 

I then remember picking Shawn up from work and him asking me what was wrong.  I couldn't even spit it out.  I didn't know how to say the words.  I did finally manage to tell him through more tears what the doctor had told me.  His first reaction?  I don't know what he was thinking but what he told me was what mattered even if I didn't believe him at the time.  He told me it was going to be okay and that we would get through this.  WE would get through this.  Yup a big fear was what he was gonna do.  It was a fear I didn't know was there until he said this.  And it was such a relief to know that he wasn't going anywhere.

These aren't just words that he said to me that day, but has proven to me day after day, week after week, and month after month.  I still struggle.  I still shut down and become disconnected, but he stays strong.  Having to handle the stress of providing for us on his own, picking up household responsibilities when I shut down, being involved with hockey, and the other stresses of life,  all the while not showing how broken he must feel sometimes. 

I needed to know that "he's got this".  And because of that I can feel secure, protected, and cherished.  WE are going to get through this, even if it means that sometimes he needs to carry me. 

Wednesday, 22 May 2013

Behind the Scenes

It's hard not to get angry and frustrated with our system.  I know we have things that work but there are so many things that aren't working.  Most of you hear about the symptoms and the every day challenges.  I've briefly talked about the difficulty with medication coverage etc. but what you don't see is all the other paperwork and phone calls involved.

I feel like I could write a novel, but I'm sure if I did no one would read it so I'll summarize and hope that you all have the patience to read this. 

In the past few weeks I have had a couple of phone calls regarding government paperwork.  I sent this stuff in January to the government.  CPP was a requirement from my insurance provider right now and along with that comes LTD tax credit.  I don't receive anything from CPP but my insurance provider would be compensated.  They kind of go hand in hand. So I received a letter from my doctor saying that LTD had required more information.  Okay so now I had to mail this again in May.  4 months from when I sent it in.  Next I received a phone call from CPP wanting to have updated information on my condition.  I had to tell them that there was nothing to update.  All of the information I gave them in January was the same and if they had processed it back then and not finally gotten to it in May, that it would have been updated information.  Needless to say I lost that battle and had to drive to Winnipeg to see my doctor, who is no longer my doctor, because he moved, but was the only one with enough information about the situation to fill out the information they needed. 

Now if that isn't complicated enough please remember that in between phone calls I have to wait for a letter with the requested information and then make the appointment and drive there etc.  So I see my doctor finally and he requests for more reports from the neurologist so that they are on the same page and don't contradict each other.  I get that.  That's good, however, it is something that on a normal basis I would have to then contact the clinic here for those reports and they would charge his new office.  But luckily I have seen enough bureaucratic problems and photocopied EVERY report they gave me when we first started this process.  So I had the report and faxed it to him!

Who's still with me?  You think you're lost?  Try keeping up with all of this from my end!? LOL  It's very very time consuming and complicated and stressful.  Now here comes the good stuff.  I was denied all of it!  Why?  Because I have to not be able to do ANY job.  I can appeal of course but I now realize why most people don't...because of how much time and effort it takes.  When a person already isn't feeling well the last thing they want to do is fight some more. 

I did have a nice long conversation with the lady from CPP and in the end I asked what job would allow me to take random days off and work for one month then be off for 3 then work a month and take another 3 off.  She told me that they have to wait for my medication to "kick in" because I may not have relapses that often once it starts working.  I then asked about all of the issues I have when I am not in a relapse and how I could possibly hold down a job when I have these issues (which I won't go into detail) but she agreed and said that I could still do A job.  Keep in mind that this job does not have to be full time, can pay minimum wage, can be in a location far away from here, but if I can do it I don't qualify.  I asked what job she thought I could do.  Her answer was I could work from home and be a telemarketer and if I was to be in a mall where bathrooms were near I could sit at a lottery kiosk....

So there you have it...unless you are bed ridden and unable to talk don't count on getting anything from our medical system.  I could go on welfare though and make more than I do now.

Friday, 17 May 2013

Why Am I A Bear?

It has been encouraging to hear that people follow this blog.  Just yesterday someone came up to me and told me that they didn't want to "creep me out" but that they followed my blog and were praying for me and that I was encouraging others by doing this.  It's hard to see sometimes.  I see the numbers on the page of how many visitors there have been but sometimes wonder are people getting anything out of it?  I guess that brings me to the fact of always being real, always trying your best, because you may not see it but people are watching.

Having said that I did not have my best moments this morning.  I got mad at the kids over pop tarts. Yup pop tarts.  It's one of those "treats" for a breakfast.  I don't buy them often so when I do they can only have it every other day.  Usually there is two boxes of 12, so between the 3 of them there is 8 days worth of them, making it last about 2 weeks.  And yes you can do the math but I've double checked it already. LOL  Anyways long story short is there was fighting over someone hiding a box, someone didn't like the kind that was left so they thought they were entitled to the other kind which someone else had already cooked etc.  Then there were tears and and sarcastic comments thrown around....and I blew!  I grabbed the boxes, threw them in the recycle, told them to figure it out cause they were NEVER getting pop tarts again, and then proceeded to tell them to ASK me if they were ever going to get poptarts again.  No one dared answer and then I told them they better enjoy their last bites...because they were NEVER getting them again!  I then stormed off to my room, slammed the door and lay in bed. 

Okay so I did come out a few minutes later, but as I lay there I was thinking how I probably overreacted.  Maybe just a bit...but then I asked myself why?  Why have I been so short with them lately?  They say that MS can make you for lack of a better word "grumpy".  So was this something I can blame on MS or was this just not one of my finer "mom moments"?  I'm not sure, I don't know that you ever can tell.  It's the same for forgetfullness. When do you blame the MS and when do you say oh that's just normal, we all forget sometimes.  I guess I think it's when it becomes more prominent. 

I know I've had a shorter fuse lately and I'm usually pretty laid back so it actually is kinda scary cause I don't want to "lose it" on a regular basis. But I don't wanna make excuses for it either. I saw a video at church on Mother's Day which may be kind of fitting.  Maybe I just need a new mattress...check it out.

Tuesday, 7 May 2013



What is the meaning of suffering? Should God spare us from suffering when He didn’t spare his own Son? To be able to trust God even through suffering is a gift that is hard-won.
LATELY, I HAVE been pondering a lot on suffering, its source and its purpose. To say that God doesn’t figure actively in suffering—that He just “allows” it and then makes beauty out of the ashes—seems like a cop-out to me and lets God off the hook. Hedoes make beauty out of ashes, but that has to be only part of the picture if it is not to detract from who God is—all-knowing, all-powerful and all-loving—and make Him weak, wishy-washy or limited in some way. If He can’t protect me from suffering but rather turns it around and uses it for my good, somewhat like the good fairy in Sleeping Beauty who couldn’t remove the curse of the evil fairy so turned the threat of death into a deep sleep, then He really isn’t all-powerful or all-knowing. To say that yes, God can keep me from suffering but just doesn’t choose to means that He isn’t all-loving, right? After all, is He the God of the Bible or isn’t He?
Driven to the Scripture a short time ago I came upon Exodus 17. Interesting, isn’t it, how these thoughts can be turning around in your mind for years, sometimes subconsciously, and then something happens that acts as a catalyst, just at the right time, and it’s as if God has turned a light on. In this case it was the apparently premature death of a colleague’s spouse. The thoughts on the source and purpose of suffering that have come to me over these past few months have had such an impact on me that I haven’t been able to move on from ruminating on them, even though I have moved on from Exodus 17 in my reading. As much as I read and continue to learn, I find myself returning to these thoughts on suffering.
Several points immediately stood out to me in this passage of Scripture from Exodus. First, it was God who led his children into this place of suffering. Second, He led them into suffering while they were being obedient to Him and were following Him as He commanded them. Third, He ultimately gave them victory but it was not without personal cost. Fourth, Moses built an altar to the Lord and worshipped God saying, “The Lord is my Banner. For hands were lifted up to the throne of the Lord” (see Exodus 17:15-16).
Exodus 17:1 says that the whole Israelite community traveled as the Lord commanded them and He led them to a place of suffering where, on his orders, they set up camp. They weren’t even just passingExodus 17:15-16 Moses built an altar and called it The LORD is my Banner. He said, “Because hands were lifted up against the throne of the LORD, the LORD will be at war against the Amalekites from generation to generation.” through; God told them to set up camp. He intended them to stay awhile in this barren place where there was no water, as far as they knew, and no way to sustain life. Moses called the place “Massah” because it was here that the people tested or doubted God, saying, “Is God really here with us or has He abandoned us?”
I believe that anyone who has ever loved God can identify with these Israelites. We’ve all been there … or we will be soon. Like others, I’ve asked, “Has God abandoned me?” even though I know that He has promised that He will never abandon me and that nothing can ever separate me from his love. I know this is true because I know Him and I know that He can never lie—He is Truth. It is not in his character to lie to me about anything, the good or the bad. But knowing this has not prevented me from questioning God when suffering comes. I believe that the lesson of Job is that God ultimately desires from me the kind of faith in Him that does not become fixated on “Why?” when suffering comes but is able to accept it from his hand with an open heart. It is most often found in children, which is why Jesus said that we must become as little children in our dependence on him and our trust in him. It seems the older we get and the more we experience the disappointments of life, the more we naturally lose our capacity to trust. To be able to trust God even through suffering is a gift that is hard-won.
So the Israelites followed God into a barren place where there was nothing to sustain them. To be camped in the desert with no water was bad enough, but to make matters even worse, they were attacked by the Amalekites, who were seeking to destroy them. And in this place of suffering and death in which they found themselves not in spite of their obedience to God but because of it, they experienced the miracle of victory and the intimacy of true worship. It was not a spectacular victory like the defeat of Jericho would be, or of the Midianites and their allies, “thick as locusts,” by Gideon’s three hundred men. This time, there was no overt display of God’s power; it was a communal act of simple obedience to God in the roles He had given each one. As long as Moses, their leader, was able to hold up his hands in supplication before God, they were able to prevail against the Amalekites. Finally, when he had no more strength, those God had given him as supporters in leading the people held his hands up for him. Only then was the battle finally won. Joshua, the brilliant, anointed, and charismatic general, couldn’t win the battle in his strength or with his strategy alone; he needed to know that the leader God had provided to intercede for him was still there doing his job. And Moses couldn’t do it alone in his limited strength; he needed Aaron and Hur to support him.
It seems to me from this chapter that God doesn’t just allow suffering into our lives; rather, God has intended that suffering must come to those whom He loves. Isaiah 53:10-11 says, “It was the LORD’s will to crush him and cause him to suffer…. After he has suffered, he will see the light of life and be satisfied.” Of course this passage is talking about Jesus, but as a child of God, the Bible says that I am a joint heir with Christ to God’s promises and resources. 1 Therefore, those promises apply to me as well. Though God leads me into suffering—dare I say designs the suffering for me—I will have victory in it. I will see the light of life, my soul will be satisfied, and I will worship God.
Of course, this is not to say that I don’t sometimes suffer because of my own sin or foolishness or because of the sin or foolishness of 1 Peter 4:16 However, if you suffer as a Christian, do not be ashamed, but praise God that you bear that name. someone else. The Bible is filled with examples of those who suffered for their own sins. In the case of Job, however, God Himself says that he was blameless and upright, a man who feared God and shunned evil. And unlike his letter to the churches in Asia in Revelation, this was not followed by the chilling words, “Yet, I hold this against you.” Job did not suffer on his own account. I believe he suffered for the sake of those millions who have come after him and have learned from his experience.
Indeed, Scripture says in 2 Corinthians 1:3-4 that God comforts us in our suffering so that we in turn can comfort others with the same comfort He has given us: the implication being that our suffering can benefit someone else and therefore, sometimes we suffer for the sake of another. In John 16:33, Jesus tells his followers that they should expect suffering. But it’s important to recognize that there are different reasons for suffering, and therefore, since suffering is inevitable, one might as well suffer for the right reason (see 1 Peter 4:16).
But that doesn’t totally explain suffering and it doesn’t explain why God actually deliberately led his people into suffering in this passage from Exodus 17. Can it be that sometimes my suffering is directly according to God’s plan for me, that sometimes God leads me into suffering, that sometimes suffering is designed specifically for me by God? Is it possible that He has not just allowed it into my life but has actuallybrought me to this place of suffering in order to accomplish his purpose in and for me to teach me something about myself or about Him? Is it possible that it may have nothing to do with disobedience or God’s inability to protect me from suffering?
In fact, I may find myself in a place of suffering when I am following closest to the Master. If this is true, and I believe it is, that sometimes my suffering has come from God’s hand, according to his will and plan for my life, rather than asking how a God who claims to love me could allow me to suffer, I am reassured realizing that this period of suffering is because He loves me. He is desirous of a deeper relationship with me that can be achieved in no other way and is perhaps preparing me for the future. It doesn’t remove the pain of the suffering but it does comfort me to know that since God Himself has brought me to this barren place He is here with me. He is sustaining me and has provided for me, even when I feel that He has abandoned me; it is He who fights for me and He will give me victory. 2 Chronicles 20:15 reminds me that ultimately, this battle is not mine; it is God’s. I am the battlefield, just as Job was. And “the Lord is strong and mighty, the Lord is mighty in battle” (Psalm 24:8).
But it also seems to me from this chapter that God does not intend for us to suffer or triumph on our own, abandoned and without Exodus 17:15-16 He said: “Listen, King Jehoshaphat and all who live in Judah and Jerusalem! This is what the LORD says to you: ‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s. resources. Not only has He promised that He is with us and that He will never forsake us 2 but He has provided support for us in the form of family, friends, leaders, and the church. It is their—and our—role to provide tangible encouragement and comfort in the middle of the suffering as well as to lift up hands in petition to our heavenly Father even to the point that our own physical resources are drained. Onlytogether is victory won. God does not mean us to suffer in silence or to suffer alone. As the liturgy of the United Methodist Church says in the New Year’s recommitment service, we are to be the Body of Christ tothe Body of Christ. That is the church in action. To allow a fellow believer to face their suffering alone is to fail in our responsibility as followers of Christ and is not part of God’s plan. To refuse to accept the role God has given us in another’s suffering is to prolong that person’s suffering, perhaps even to condemn them to defeat. Even then, God is there in the suffering. But just as He has allowed us to share with Him in the miracle of creation by having children and to share in the miracle of salvation by being the messengers of his good news, so He has allowed us to share in the miracle of victory by participating in another’s suffering.
So God brings me to this place of suffering, many times for reasons known only to Him. And He ultimately gives me victory here. But I am also reminded from Exodus 17 that victory isn’t cheap, either for God or for me. It has been promised by God but it still comes at a cost. Yes, the Israelites defeated the Amalekites that day; but how many Israelites died in achieving victory? How many families mourned the loss of one they loved, perhaps depended upon? They weren’t fighting with toy weapons; this was war, and no one then was concerned about “collateral” damage. Victory costs: Jacob walked with a limp; Job’s new sons and daughters were not the same children he had lost; Jesus’s glorified body still bore the nail scars in his wrists and feet, and the hole in his side. And ultimately, victory is only possible at all because of the suffering of God through Jesus’s death on the cross. Although victory is assured for me by God, I should not expect it to be without personal cost. So then I am forced to ask myself, how much do I really want victory? At what cost?
Scripture assures me that if I persevere, I will see light and life restored. I will be satisfied with what God has done in my life and with what I have learned of his character through this suffering and I will fall before Him in worship. Through the suffering and the victory God has revealed Himself to me in a more complete way, perhaps through the wisdom of a godly friend, as Jethro was to Moses in Exodus 17. After the victory of the Israelites over the Amalekites, Mount Sinai was covered in smoke and fire. God descended among them in fire, gave them the Ten Commandments, and revealed his glory to Moses. He promised that his presence would be with Moses and that He would give him rest (Exodus 33:14). And Moses’s soul was satisfied.
None of this—the Ten Commandments or the lessons of God’s promised victory over suffering or the promise of God’s enduring presence—could have been learned if the Israelites had not first followed God into that place of suffering where there was nothing to sustain them but God, where they had to acknowledge that they were totally dependent on Him, where they were vulnerable to attack from those who wanted to destroy them.
God leads me into suffering because He loves me. But He doesn’t leave me there. He provides for me, sustains me, and gives me victory. He gives me his divine presence, his righteousness, and afterward, those times of green pasture and quiet waters where He restores my soul and guides me into the paths of righteousness—all so that I might really know Him and love Him. After I have learned to trust Him and have recognized my total dependence on Him, my soul is satisfied.
The next time I find myself facing suffering—and there will be a next time—I can say with the psalmist, “Even though I walk through the valley of the shadow of death I will fear no evil, for you are with me , your rod and staff, they comfort me. You prepare a table before me in the presence of my enemies (the victory you gave me before is known to all and you will do it again); you anoint my head with oil (you honor me before my peers); my cup overflows (I am satisfied).” Then I will worship God in the true spirit of worship. I will give Him glory as I lift my hands to heaven in thanksgiving and humbleness for God’s love and care and loving kindness to me, and I will say, “Surely your goodness and mercy will follow me all the days of my life, and I will dwell in the house of the Lord forever!”
Lastly, I’ve always thought that God’s purpose in my life here on earth is to prepare me for heaven, and that He will do whatever is necessary to accomplish that purpose, for as long as it takes. I’ve shared that thought with parents who are grieving the perilous path their child has taken, as a comfort to them. And it’s true that while we are here on earth God is preparing us for heaven—but it’s only partially. It’s kind of a “motherhood” statement: it has no teeth, nothing you can grasp. What does it really mean, that God is preparing me for heaven? What is it that makes me ready for heaven? What is the actual goal? Is it just heaven itself? Then why doesn’t God just take us all at the moment of conversion?
What I’m beginning to realize is that God’s purpose in my life while I am here on earth is not so much to prepare me for heaven as it is to mold me into the image of his Son. And that is done through suffering. If this is true, that God’s purpose in my life is to mold me and shape me into the image of his Son, then why should I be surprised when I suffer? Why should I expect that I should be spared from suffering when Jesus suffered so much? In Matthew 10:24-25, Jesus says, “A student is not above his teacher, nor a servant above his master. It is enough for the student to be like his teacher and the servant like his master.” So if Jesus was born to suffer according to God’s design, why should I expect that God should protect me from suffering? Should God spare me from suffering when He didn’t spare his own Son—even though Jesus pled that there might be another way to effect salvation— but instead, gave him up to suffering and death for us all? In fact, should I not expect to suffer even more, the more I become like him?
This is, in fact, why so many believers in generations past actually prayed for suffering or tortured themselves by beatings and flagellation. (Of course, suffering that is manipulated or deliberately provoked does not originate with God or accomplish his purpose in my life, as God is not in it.) Yet I’m afraid we have become soft and complacent in our commitment to what we believe. God molds me into the image of his Son in order to prepare me for heaven. And only as I submit to his gentle but firm hand and accept the suffering that He brings into my life can it be said of me as it was of the apostle Paul, that it is God who works in me to will and to do, according to his good purpose, so that I may be conformed to the nature of his Son, who humbled himself and became obedient to death, even death on a cross. 3
Only then will I be ready for heaven. Only then will I truly worship. Only then will I be able to hear from the Father, “Well done!” Because it’s all about the Son!
Margie Zacharias is Senior Vice President of Ravi Zacharias International Ministries and the wife of Ravi Zacharias. Romans 8:17 says, “Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” See e.g., Joshua 1:5; Psalm 27:10; Isaiah 41:10, 13. See Philippians 2:13 and 8.

Monday, 6 May 2013

Spring Has Finally Sprung!

It's been just over 6 months since I was officially diagnosed with MS, and it some ways it seems like an eternity ago.  I look at how far I've come, the obstacles that I've had to go through, with my family along side me every step of the way, and I can't begin to describe the change in me.  I'm not saying this in a gloating way, but looking at it from the perspective that only God could change me in the way that I have been changed.  My outlook on life is very different.  The small things actually seem small, and changing my life focus from a selfish "what's next?" "what do I want to do?" to a "what does God have in store for me?" kind of focus.  I have had to rely on Him and right now I am at a place of surrendering and asking God, "What do you want for my life?"  I haven't had a choice seeing that all of MY plans have left me lying flat on my back like a rug being pulled out from under me and I have no other option but to look up. 

I have decided to volunteer as much as I possibly can.  Where and what kind of things I don't know, but that is where God is leading me.  I have always enjoyed working with people and helping them so in this way I will be able to still do that.  There have been a couple of things that I have signed up for, one being a very small thing, while the other is quite a bit more time consuming but something that works for me by being flexible and something that I can do from home most of the time. 

Spring has finally sprung and so it has in my heart as well. 

A Psalm for giving thanks.

Psalm 100:1-5
 Make a joyful noise to the Lord, all the earth!
2 Serve the Lord with gladness!
Come into his presence with singing!

3 Know that the Lord, he is God!
It is he who made us, and we are his;
we are his people, and the sheep of his pasture.

4 Enter his gates with thanksgiving,
and his courts with praise!
Give thanks to him; bless his name!

5 For the Lord is good;
his steadfast love endures forever,
and his faithfulness to all generations.

Friday, 19 April 2013

Great Support

I am so thankful to have such a great support system.  I have my family who is with me every step of the way, and many friends who have helped along the way.  Just yesterday I was with an awesome group of ladies.  They have all signed up to participate in the MS walk and are great encouragers for me.

Just the other day a lady from our church saw the kids at school and gave 2 of them money for the MS walk and told how great it was that they were taking part in it.  It's the little things that count.  Hearing words of encouragement given to my kids is a small thing to do but means so much.

I also got to go away last weekend with Shawn and another couple we know, while my mother-in-law stayed with the kids.  It was really nice to get away for a bit.  Just to have time to do whatever we wanted and not think about all the daily stresses.

Having support is crucial!  And this communtity has been fantastic. You know the saying that when you go through hard times you find out who your true friends are?  Well I am soooo happy that the people who I thought were my friends really are!!   When I am down or struggling I have people to turn to.  What a lucky lady I am :)

Tuesday, 9 April 2013

Mountain Tops and Valleys

It's been a pretty awesome week!  I really have had a productive, feeling good, past few days.  Yesterday not so much but that was cause I had a LONG weekend.  Not really used to getting up at 6:00am for 2 days in a row. LOL  I took some steroids right before spring break and it's too bad they didn't have their full effect until after the break was over, but having said that, I now am doing pretty darn good:) 

As great as I feel, there is unfortunately always a downside.  Always some lasting remnants of the relapse.  This time it's not too noticeable, but still present.  The front of my legs, (shin area) is losing it's sensitivity.  I wouldn't say it's completely numb but there is a lack of sensation.  If I rub it or shave my legs I can't feel it.  And there is a bit of numbness in my toes, but mostly at the tips and not on all of them. 

I did go for a walk the other day.  It wasn't very long, only to the Subway.  But as I was walking my feet and legs got number and number.  When I got there I sat down and my whole legs tingled.  They tingled for a good 2 hours after.  That wasn't something I had expected and it didn't last but just something new to get used to. 

Having said that I am still feeling decently good.  It's nice to feel excited and happy about life again.  I didn't realize how low I was til I was able to look at the valley from the mountain top.  I know more valleys are coming but right now I'm going to enjoy the view.

God graciously gives us mountain top experiences so we are able to navigate the many valleys in our lives, not so we can stay on the mountain. So, cherish these mountain top experiences, and draw from them in the valleys.  (Saw this and thought it was pretty fitting.)

Monday, 1 April 2013

Not Worrying About Perceptions

I just came back from a week long trip to Thompson.  I went there with the kids and my parents to go for a visit and to just "take a break".  As we drove the 10 hour trip, I had a lot of time to think.  On the middle of highway 6, in the middle of nowhere, I had a moment of "clarity", if that's what you can call it.  This moment basically came like the flip of a switch, but it was so clear....

I still have a life to live....

That was it.  I thought about it and as simple as it seems it was an epiphany for me.  God still has a plan for my life.  I am still here, things are different, but I'm still here.  And as soon as I realized that small and simple thought I felt joy spark.  Joy that I have not felt in a long time.  Why?  Because I made the huge step of acceptance.  It's like the moment an alcoholic finally admits they have a problem.  I finally accepted the fact that I have MS.  I have MS and it's not going to go away.  Just like an alcoholic will always be an alcoholic, I will always have MS.  Every day will be a choice.  Do I live in sorrow and self pity or do I choose to do things to the best of my ability?  Am I ready to do the things God is calling me to do? 

I don't often worry too much about what people think, but I have been struggling with this.  What if people see me and I am doing something that they think I shouldn't be able to do?  Will they think, why is she not working?  She doesn't look that bad.  If she can do (blank) why can't she do (blank)?  I guess it seems a lot more personal now.  The thing is...if I worry about what everyone else is thinking or saying, am I doing what I am being called to do?  Am I living my life to the fullest, or am I living it with boundaries set by others?

I want to tell you a small story of what just recently came about.  I came back from my trip and Shawn proceeds to tell me that he found out "through the grapevine"  that it was a struggle to get a bakesale up and running  for our family a couple of months back.  This bakesale was inspired by a friend who knew things were a bit of a struggle at the time.  EI had run out, I just started paying for medicine, we had a couple of hockey tournaments booked and just needed to get through a couple of months before income tax, and hopefully by then LTD would be kicked in and things would be okay.  Well for whatever reason the bakesale never happened, but we did find out that the perception can be "well they still have their kids in hockey so it can't be that bad".  Wow!  What do you say to that?  I knew there was talk but to hear it first hand is tough.  Hockey is prepaid, and why would I take the one thing that is still normal for my kids away?  Everything in their life has changed as well and this provides some sense of normalcy to it.  And no we aren't struggling forever, but yes this period of time was rough due to circumstances.  Well thankfully God still provided!  We had received financial support from a couple of people, we came home one day to find our counter full of groceries, and I went to the pharmacy to pay for medicine only to find out that we had hit our Pharmacare deductible and things were free until April!! 

What I want to say is that God knew our needs, and there were people who decided to trust God in what he was telling them to do, and I need to be ready to do what God is calling me to do.  If that means that people talk so be it.  I have a life to live and I have many good things I can still be doing. I'm encouraging you to do the same thing in your life.  Don't get caught up in perceptions, because only God knows the whole story.  Do what God is calling YOU to do, because He knows what He is doing and knows the outcome even before you do.  Who knows...you may even be a blessing in disguise to someone else... if you can let Him worry about how to use your blessing.

Thursday, 21 March 2013

More Steroids

I've been very fortunate to have my parents out for the past week.  I think it has helped lift my spirits in the sense that I am not at home by myself all the time with too much time to think.  I guess having my kids home for an extra 2 days because of storm days has helped a bit too. LOL

Unfortunately my symptoms haven't gone away and are starting to get slightly worse.  My left leg is pretty weak and the buzzing down my back returned yesterday evening.  I can even feel a bit of "fuzziness" in my lips.

 I have talked to the MS clinic over the past week and had to go for a urine test, because apparently a bladder infection can cause symptoms, however that came back negative.  They called again yesterday to see if things had improved but with the current prognosis things are looking a little bleak.  I was told that most relapses last 2-3 weeks.  I wish!!  Mine have lasted more like 3-4 months!  Last time I took steroids via IV for 5 days after I had had symptoms for about 7 weeks.  This time it has been 3 weeks and based on things still deteriorating I opted for taking steroids again.  Especially since I am heading to Thompson for Spring Break with my parents. 

So today I started on 1250mg of Prednisone.  I am taking 25 pills per day!  Thankfully it's only for 3 days!  Hopefully this helps and the inflammation goes down within the next week or two.  It would be nice to be able to feel the ground properly again and not feel like I'm going to fall over or have my leg give out on me every time I need to go somewhere.

Monday, 11 March 2013

It's not a "Dip"

It's not a "dip".  Last night was tough.  I wanted to throw something, hit something, scream.  Trying to ignore the truth doesn't make it so.  I'm relapsing....again.  It's just a lot more gradual this time.  If I think about the last time it was gradual too, but I was recovering from surgery and just didn't really process all of that until now.  I just don't know that I can do this.  4 bad months to 2.5 good months is not exactly my favourite ratio.  I'm just so mad and sad and trying not to shut down...

Friday, 8 March 2013

Overcoming Fear

Another new experience. I'm not entirely sure what I would call this. A "dip" maybe? It was weird because it was so gradual. I'm not sure if this is part of the whole new life so to speak or if this is the start of a relapse. Maybe it will go away and that will be that. Or maybe it progresses. Only time will tell I guess. My feet have been numb and my legs tingly. Almost like a slight vibrating...and it's almost constant. It's been like this for about a week. And I have been more tired than usual.

I'm not sure what else to say other than I am really trying to not live in fear. So much is unknown and I have been working through a lot emotionally. The past couple of days have been better, but there is still a long way to go and I know that I will still be dealing with this once everyone else has long forgotten. But God never forgets me and He doesn't give me a spirit of fear.

"God did not give us a spirit of fear, but of power, love, and of a sound mind."  2nd Tim 1:7

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."  Isaiah 41:10

Thursday, 28 February 2013

The Grieving Process

This is what came out via texting with Shawn this morning. We had a bit of a rough morning.

Charis: What's going on? I thought work was good.

Shawn: Work is fine.

Charis: Ok so if its not just me and the kids what else is it?

Shawn: I meant its not just how you and the kids feel. It isn't very often that someone wonders how I'm doing with all this. I try very hard not to express my feelings on all of this to keep you sheltered because you are still dealing with it yourself. I try to be strong but in the end I am weak too. I break, I hurt, I cry, I feel lost and very helpless.

Charis: Because of how it affects life? Or because you are sad for me? I have asked and many people have asked me how you handle it and I have to tell them what I see which is nothing. U want me to open up yet u do not. In the end it's easier for me to know you struggle with this than to have u explode here.

Shawn: I can deal with how it affects life if we are ready to deal with it. We're not there yet. I am sad for you because of how it is affecting you and how it is affecting us as a couple and how it is affecting us as a family.

Charis: At least I know what to expect

Shawn: I have to keep it in because you don't handle when I am stressed very well. My stress means more stress for you and you have enough.

Charis: U feeling sad and upset isn't necessarily that u are stressed but I would rather see that and deal with it than it be out on the kids

Shawn: It's because I feel like I try so hard and where you are at right now has given me nothing to show it is helping. You are so sad all the time and I do things to try and draw you closer and you don't budge. Call it selfish but I am trying to bring you closer for me too.

Charis: It's not selfish. Everyone tells me that I need to go through the grieving process but to be honest I've never had to go through it and I think it's different going through it over yourself! Usually it's for someone else. I don't even know what the process looks like. How do u grieve over your own life?

Shawn: I don't know. Is it just feeling sorry for yourself for a while then accepting and moving on? If it is then you are already in the middle of it but it has to run it's course. Your life isn't over it's just changed.

Charis: Changed a lot. And I think I grieve over the things that I can't do. Over the loss of hope. I guess I always made plans like maybe I can do this later or this or should I go to school or whatever. And maybe those things never would have happened, but at least I could dream about them or think what if. There was hope and we all do that with life but now I'm not sure what to hope for or what kind of plans to make. I'm sure I will think of things but now it's almost grieving over the things that could've been. I honestly thought that I could go to Thompson for spring break. I probably wouldn't end up doing it but then I realized that that's not an option because I dont think i can drive for that long or what if I relapse while I'm there? How would I get back? It's things like that. My options are being taken away because of what ifs

Shawn: Yes and it takes time to see those new dreams through the cloudiness of life. You had time to build those dreams and they were taken instantly.

Charis:And with this disease it constantly changes and somedays can be so different from one another that its almost impossible to plan

Shawn: And finally you have spoken of what your issues are.

Charis: I have a hard time even planning for summer holidays because what if I relapse? Or what if it happens when we are gone? I'm sorry for being distant but it know that it's not you. This time it is 100% me. I honestly don't know if I could get through this without you.

Shawn: If I am with you it's not as big of deal. And that's why it isn't bad going and staying with family.

Charis: True

Tuesday, 26 February 2013

When the Novelty is Gone

I have had a rush of emotions today.  One minute I was fine, then the next I was crying, then laughing at something.  All the while wondering what is wrong with me? 

I went with Shawn for lunch and he told me that he was frustrated with me.  Why?  I asked.  "Because you just seem disengaged."  "Have you accepted all of this?"  NO! That is how I answered, without hesitation.  I haven't.  I wake up doing the same thing every day.  I stared at my needle this morning thinking how is this 1ml of medicine going to help?  I stared at the mess in the house and wondered, is this my purpose now?  To pick up after everyone? 

I told Shawn.  It's only been 4 months.  I know that seems like a long time, but it's not.  And only in the past month have I had everything finally figured out in regards to appointments, medication, work, etc.  I finally feel like I'm able to say, "This is it.  I have done everything that needs to get done, and now life goes on."  Only I don't know how.  The novelty is gone for everyone else and I feel like I'm only really just beginning.  It's like watching from a window while the whole world lives their life and you are stuck behind that glass.  Except it works like a one way mirror.  I can see out but no one can see in.

Monday, 25 February 2013

Planning Life?

The past 3 days have been somewhat of a downer.  I went shopping today with some friends and made it through while having a great time!  I really needed it.  A vacation is definitely in order this summer.  I'm not sure where exactly or when, but we all just need to get away and have some fun! 

The bottom of the sides of my feet are half numb again and my hands have had these random little shooting pains in them.  I feel physically tired as well.  It is tiring just to walk around which is why I am super happy I made it today! Even if it was only a couple of hours.

I just don't know if I can fully wrap my head around the idea of life being like this.  Always dealing with the unexpected.  I don't even know how to plan for a vacation, because I don't know what kind of condition I will be in.  I guess it's a good thing I've always been good with spontaneity, cause I think life is going to have to be lived a bit on the fly. Planning on having to change your plans.

Friday, 22 February 2013

Same old thing

I'm starting to adjust.  It's still difficult some days.  Most people work and so the days can be long and boring.  It was different when I had little ones at home.  They kept me busy and there were things we could do and places to go.  I have in a sense more free time than I would like.  I have great intentions of my house being the neatest in town but that quite frankly is a huge understatement!  The more I look around the more overwhelmed I feel.  It's not too bad to keep up with the basics but the extras!  That's what kills me!  I also need someone here to inspire me. lol  I kind of feel like a factory worker who works on an assembly line.  Doing the same old thing day in and day out.  Dishes, laundry, vacuum, cook.  Dishes, laundry, vacuum, cook.  I try to feel joy and excitement in it, but I just can't.  It's so utterly boring!  I think it doesn't help that it's winter.  I can't wait for summer! 

This blog wasn't meant to be about complaining about housework. It's supposed to let you know how much of a life adjustment it is.  And it doesn't happen overnight that you become accustomed to it.  Hockey life is winding down and then I wonder...what will fill my evenings then?  Will they be as boring as my mornings and afternoons?  It's gonna make for a REALLY long day then.  How do I stay inspired?

Wednesday, 13 February 2013

Lonliness and Guilt

I sit here and write to you at 1:00am.  The thing is, it's no different at 1:00am than it is for me at 1:00pm.  Still here with no one around.  It's a lonely time.  I have been at home for 7 months now and I still struggle with the guilt.

 I have never been much of a homemaker.  I like to be out and about and would rather shovel the driveway than drag out a vacuum cleaner.  I don't like cooking and cleaning and I find it sooo hard to motivate myself to do these things.  The problem now is that I'm not entirely sure what is what?  I have read that MS fatigue also affects your ambition and motivation.  That however, is something I struggle with at the best of times.  So how do I know what is what?  Is it just me or the disease?  I have put that theory to the test many of times.  Actually going full throttle and cleaning with the intent on working for lets say an hour.  The other day I made it 40 minutes.  My arms started to feel like lead and I was sweating.  Did I mention that all I was doing was cleaning the kitchen and picking up around the house?  So most days consist of me working in "spurts".  I clean up the dishes.  I do a load of laundry.  I pick up some stuff.  Etc. Etc.  And by the afternoon I feel like doing nothing, but.....I have the energy to go out.  To go out for coffee, which isn't exactly working.  So I need a break of the boredom here, but what do I do? 

I helped serve hot lunch at school one day, I have helped with lice check at the school and I have been asked to help serve cupcakes on Valentines Day at the school too.  Only one problem....that is the place I used to work.  So I feel guilty for volunteering and working, even though I know that those are two totally different circumstances.  I like to be involved still as much as I can.  My children attend there and will for many more years.  It gives me a connection to something I've lost. 

I feel lonely being by myself all day, yet if I step out I feel as though the world is looking at me like "what's so wrong"?  And then I feel guilty for not contributing in some way.  How do I find a balance in a small town where everyone knows you, and everyone is watching? 

Monday, 4 February 2013


It's Monday and once again I'm beat!  Not just sleepy, but my legs feel like jello and my whole body is tired.  Kind of like when you have the flu and it's tiring just to walk to the bathroom. 

They say to take it easy and not push yourself or "overdo it".  Well that's exactly what happens on hockey weekends, however, I just can't help it.  I LOVE watching my boys play!  I realized that adrenaline actually keeps me going.  On Saturday I was at a tournament with Connor out of town.  Cole had a game in town, so I booked it back to town to watch Cole's game and then left right away to drive Connor back to his game which was about 35 minutes away.  When the day was finally over, it was a 14 hour day of hockey.  As soon as Connor's last game of hockey was done and I sat in the van I was bagged!  Then I got up on Sunday and did it again, knowing that I would pay the price today. 

So this isn't a pity blog, but one to just be real. To let you know how much different a weekend is.  How much more work it can be. I know I overdo it.  But the weekends are just that, the weekend and Monday is my day of rest.  I know this next weekend will be rough, because it's an away tournament and last time it took me a whole week to recover.  I think half the battle this time is knowing what to expect and being prepared for it. 

Thursday, 31 January 2013

Faith For Finances

This past month has been stressful.  Most of us have financial problems at least some point in our lives.  It is one of the hardest things I find to let God take control of.  My practical side takes over and tells me that numbers don't lie and we are where we are and money doesn't fall from trees. (Even though my children seem to think so.)  Needless to say things have been tight.  EI ran out this month.  Living on a shortened budget is difficult as it is but with hockey season and tournaments galore it gets even tighter, plus we had to factor in the cost of medicine for me, which is still the amount of a car payment even after coverage.  So add all those factors together and we it becomes a problem. 

Anyways, I had to go to the pharmacy and fill a bunch of prescriptions for the family.  $2000 worth actually before coverage.  Most of which was mine.  So I went there and guess what the pharmacist told me......?  We hit our pharmacare deductible!  NEVER have we hit that number, and with it being January I did not think that that was possible, but they do not run on the fiscal year.  It starts over again in April.  I did have to pay half still but the rest was covered.  So for the next 3 months I don't have to pay! Yay! 

Next came the fact that we were welcomed home one evening after hockey to a counter full of groceries!  I mean where did that come from?  (Yes the door was unlocked, but don't get any ideas because we are going to be more diligent with that.) 

And that's not all.  I was still wondering how we were going to pay for some upcoming tournaments without going further into the hole (seeing as we had 8 weeks of tournaments in a row), when I get a phone call from the LTD provider and they tell me I am approved and payment will come in 1-3 business days!  Praise the Lord! 

Proverbs 3:5    "Trust in the LORD with all your heart and lean not on your own understanding"

Friday, 25 January 2013


I realized something the past couple of nights.  I go to sleep afraid.  Every time I wake up in the middle of the night and when I wake up in the morning I check....check to make sure I can feel everything properly.  I wake up in the middle of the night and many times my hand is numb from the way I sleep.  (I think this happens more just because the circulation is having difficulties as it is.)  Having said that I stay afraid for those brief moments until I start having feeling back. 

The longest I have gone without relapsing is 2 and a half months.  In 3 weeks I will be at that point....I don't want to go back there yet.  I'm not ready.

Monday, 21 January 2013

Blindsided by Reality

I started thinking about last week and how it's differed so much from the past two days.  Yesterday I had a normal day.  A bit tired....yes, but not really any more than an average person would have.  Today I feel pretty good too.  I even scrubbed my bathroom, which still took me an hour and I haven't touched the downstairs one, but maybe tomorrow :)  I think about how happy I am to have had these days and even though they still aren't normal compared to how I felt before MS, I felt normal.  What I'm trying to say is that I think I'm adjusting to my new normal of good days.  Even though the good days aren't the same as they were before, they are my new normal.  It's kinda like how an 80 year old adjusts to life and knows that they can't do the things they could when they were 20.  They adapt. 

Last week was tough.  Not just because I was recouping from the weekend before but it was hard to have reality hit you square in the face...especially when I had no idea it was coming.  After the weekend Monday had come and I was exhausted.  Here I was hanging onto hope that everything would be okay because I had made it through the long weekend of hockey with 4.5 hours of sleep the first night and 6 hours of sleep the next 2 nights.  Well I was wrong....it took me a week to recover.  Things are not the way they were.  That wasn't the worst of it though.  The thing that took me by surprise the most was when I went to the doctor and was filling out insurance papers for me.  The question came back asking when I would return back to work and he said NEVER. 

Never is a hard word to hear.  I mean that's what I was there for...I was there for him to fill out forms for Long Term Disability and we had already had the conversation that in all likelihood, based on my life and day to day struggles I couldn't go back to work.  Hearing it on the other hand at the age of 31 was really tough.  I'm not even sure if I've completely processed that yet. 

The last thing that happened was only 2 days ago.  Working at my son's hockey tournament I was at the silent auction table and was supposed to fill out peoples information on a piece of paper.  I had to have my friend who was helping me at the time fill them out for me.  However, she was gone for a couple minutes and I had no choice but to attempt it myself.  I managed to write out their information as I felt them staring at me, probably wondering what was wrong.  In order to write legible it took me about 30 seconds to write their name and phone number. 30 seconds may seem short but think about it.  Even pretend how long it takes you to write your name and number. 10 seconds tops??  That was my first experience of actually feeling like people noticed something was wrong with me, without knowing what the problem was.

It's a new week and we will see how long these good days last.  I think my record is 4 so it here goes for a couple more good days! :)

Saturday, 19 January 2013

New Endeavour

Technically I should be napping right now, but oh well:)  I always seem to get great blogging ideas when I'm either driving or in the shower.  Then when I sit down to write, I can't remember what they were. LOL 

I wanted to share with you that I started a team for the MS walk in May.  I have never really done anything like this before but I find it very intriguing how you all of a sudden can become an advocate for something you knew you nothing about.  When something has entered your life you become much more aware and your heart has passion for that, whether it's something you are encountering on a personal level or something that you are going through because of someone else.  I see sides of people I never knew existed, or it's allowed me to have conversations with those I wouldn't normally interact with.  Even my kids are becoming advocates for it.  The two older boys are going to start some fundraisers for in their school, and are going to join in on the walk.  This is something that they will do on their own and for that I am excited.  It's exciting to see your kids become passionate about something other than a video game or the latest movie. LOL  So that's my "plug" for the MS walk on May 26th in Morden.  If you want to join you can go to www.mswalks.ca  and then search for a team using my name (Charis Parago) in case you need spelling, and the team name is Grace.  You can donate using the same search tools.


Wednesday, 16 January 2013

Tired ...Tired of it All

I'm tired. Tired of being tired.  Tired of trying.  Tired of feeling guilty.  Tired of being alone.  Tired of trying to figure things out.  Tired of being excited about a good day.  Tired of trying to be happy all the time.  Tired of thinking about the future and how it can only get worse and not better.  Tired of holding out on hope.  Tired of putting in so much effort for so little accomplishment.  Tired of saying..."I'm tired!"  

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:)