Thursday, 27 December 2012


So Christmas went quite well.  We had a great time with Shawn's family.  Christmas Eve was when we did our traditional turkey supper.  I must say that it was a tough day.  By the time supper was done I was pooped!  I slept for a couple of hours after supper.  It felt like I had been on my feet ALL day!  I used the example of when Shawn and I used to work at McDonald's and would work all day without a break....that's what it felt like except I had only been in the kitchen the afternoon.  Christmas Day I slept in the afternoon. 

What I realize is that I can't do a full day.  I can't do a day that is full of walking around or standing up.  I get tired way too easily.  Usually I can putz around the house and sit at the rink.  A day like that still puts me to bed early and sometimes with an afternoon nap, but a person's regular day...I can't make it through.  I have to sit.  It's so hard to explain, but this fatigue thing is gonna be an issue unless I find a job that i can sit at.  And I don't want to spend all of my energy at a job and have none left for's a bit of a dilemma.

Today we are heading to the city to see a couple of my brothers and their families.  Looking forward to it!  But I think I'll nap on the way in. JK LOL

Monday, 17 December 2012

Which seed are you?

God may bend me, but I won't break.  That sums up a song I was listening to this morning.  Life is so crazy right now, so busy and I think sometimes...why do we do it?  Why do we let it be so busy?  There are times when I feel like I don't live up to the worlds expectations as a Christian.  Did I spend enough time with God?  How come we haven't been to church?  I have come to realize that it's not about how much or when I spent time with God.  Yes this helps us stay strong in our walk with him, but He isn't keeping a chart.  There isn't a certain quota we need to make.  Our job is to let Christ be shown through everything we do. 

This time of year is especially busy for us because of hockey, but I realized that there are so many opportunities that I have missed to be an example.  It's easy to get worked up during a game, get caught up in all of the gossip, to jump on a band wagon of one person or another.  I could write a book about everything I hear at that rink.  Most of the time I don't get involved, but there are times when I get caught up in it just as much as everyone else does.  What bothers me most is that most of the parents attitudes start rubbing off on their kids, including mine.  "Oh we lost cause the refs suck." That may very well be the case but our attitude is not helping or changing anything.  The only thing it does is harbour a bitter seed that grows and grows and finally it sprouts.  Once a seed sprouts everyone can see it.  I saw this weekend two things in my kids that upon reflection I wasn't so proud of.  One was a small altercation, but with a teammate. And my son was the one trying to tell him what to do.  Okay so not the worst thing, but then my next son tells me a story...

"You know that boys with the long hair that looks like a girl?  We called him the woMAN.  He checked me and told me to "suck it".  So I told him he better watch out woMAN.  He two handed slashed me and got a penalty."

My first reaction was pride.  Glad he stood up to this kid who was trying to cause trouble from the start, the kid who refused to shake hands with our team afterwards.  Glad that my son had drawn a penalty.

We all have this sense of entitlement.  That we are entitled to our opinion, entitled to what's right and fair. Do we trust God?  Do we trust that He will work things out?  That He knows better than us?  Our opinions when expressed to everyone else usually ends up in complaining and complaining usually means we're gossiping.  And gossip is that seed, that seed that eventually sprouts.  And it's never a pretty flower.  It's more like a dandelion, where those that don't know any better think it's a pretty flower, but those of us that do, know it's an ugly weed, which spreads like wildfire.  Which seed are you?  One that is a flower or one that's a weed?

Tuesday, 11 December 2012

Counting My Blessings

I'm gonna be okay.  No matter what kind of days I have, I have so many things to be thankful for.  My support system is great!  I have a family who cares, accommodates, and who ultimately are there for me no matter what.  I have a pretty good quality of life still, and I think most of my fears result in the what ifs.  So what if....?  I can't worry about that because it hasn't happened and worrying never got anybody anywhere, except down.  God loves me, has a plan for me and I will live out that plan.  I am not saying I will never have days that I am down, as I'm sure there are many more to come but I vow from here on in to fight.  Every day I wake up I will count my blessings, before I count my misfortunes.  I will try my best not to be afraid or discouraged.  That is my prayer for my days here on forward. 

I start my meds within the next week and I have so many unanswered questions revolving around work that need to be answered this week, but I will take this one day at a time.  I only have one life to live and I'm gonna live it for the One who created me and ultimately knows me better than I know myself.

I hated this song as a kid but the words really apply...

When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.
Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.

Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by.

When you look at others with their lands and gold,
Think that Christ has promised you His wealth untold;
Count your many blessings. Wealth can never buy
Your reward in heaven, nor your home on high.

So, amid the conflict whether great or small,
Do not be disheartened, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.

Thursday, 6 December 2012


Waking up and getting up are a challenge.  Every morning I just want to lie in bed.  Depression?  Maybe....Although I don't know why...I feel happy sometimes, but not real happiness, just the kind that you put on for the day so others don't think you're weird.  I don't call back my friends, I don't initiate conversations....I don't even want to be anywhere but at home. I feel like crying most of the time.  I get mad at the kids easier. I don't even want to admit that there is an issue because I feel bad enough already for my family feeling bad for me!  Shawn is probably stressed too but I don't want to even ask about that for fear that if he is stressed I will be more stressed!

I'm supposed to go back to work in less than a month, but yet I know I don't feel right yet.  I have afternoon naps and go to bed way earlier than I used to.  I get up later too.  I have an appointment tomorrow to talk about the different meds.  Do I want to inject myself one a week or once a day?  I think off hand the once a day med is better but I would rather only have to stick myself once a week.
Oh and then there's Christmas!!  I love Christmas... I do.  That probably is least worrisome for me because everyone will be home then and I won't be so alone and have so much time to think.

People are always asking how I'm doing and for once I would like to say "GREAT"!  I feel like I'm always being negative.  "Oh all right. Getting better. Ah. Ok." 

I just feel like a different person.  Usually I'm a fly by the seat of my pants kinda person.  It takes a lot to bother me.  Now I feel like I'm the negative, no fun, always worried kinda person.  And I don't like it. I just don't know how to fix it. 

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!

Friday, 26 October 2012


Reality is tough.  So many people have so many opinions and ideas.  They come with huge hearts, wanting to help and give insight as best as they know how.  Figuring out what my reality is....well it's a process. 

I have learned over these past few weeks that you can't run from everyone and you can't close your ears.  I can however look deep and search what is best for me.  There are so many ideas and possablilities of things that "might" work or help but in the end I need to come to those conclusions on my own.  Yesterday was a day of reality.

What is my reality?  What is the reality of MS?  There is no cure.  No way to make it go away.  I can try different methods such as vitamins, massage, physio, chiroprator, etc. to help with circulation and symptoms but that's all it is....trying.  There is no guarantee.  Everyone is different.  It may help relieve symptoms or it might not. Am I willing to try?  Sure I am.  Those are things worth trying.  Trying some John Doe's concoction for only $99.99 is not!  Or flying to Timbuck Two for some miracle surgery!  There are drugs out there that help people stay in a relapse mode.  But that is different all together.

I saw the neurologist yesterday and I will have to start going to the MS Center in Winnipeg to talk about these different drugs.  I am classified in the Relapse Remitting category, which is about 80% of people diagnosed with MS. Yesterday, I found that my reality is that I have to wait for my symptoms to go away.  There is no known drug that can fix me while in a relapse state.  So here is where I learn patience.  He told me there is nothing I can take to make the numbness go away, or bring strength back into my hands, or keep me from being dizzy.  I just have to wait.  So I will try a few of the ideas, one of them being to continue taking the Vitamin D and Alpha Lipoic Acid, as well as try some physio to help keep my muscles from tightening.  I also was blessed with someone offering to give me a couple of massages to try and help with some circulation.

Most people when they relapse have one or two new things happen, mine however is quite a few due to the number of new spots.  So right now I need to be patient and wait.....that is my reality.

Isaiah 40:31

But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.

Monday, 22 October 2012


It's been a couple of days since I last blogged, but it's been pretty busy around here this weekend and a lot has happened.  For one it is a lot harder to type because my hands are even worse...if that's even possible.  I can't feel the spaces on the keys and the range of motion is less.  So I'll keep this one short.

I have been taking Solumedrol intravenously for the past 4 days. Tomorrow is my last day.  It isn't helping so my doctor is going to call the neurologist tomorrow to let him know.  Basically if there was any inflamation on the nerves then this would help.  I was supposed to take it for 3-5 days.  Since it isn't working I will have to try more severe meds.  The doctor did tell me that this probably means I am at a different level of MS which is not a good thing, however I still don't know what it all means.  There are still lots of questions and new symptoms such as being very tired now and having issues with my taste buds.  One day it was lack of taste, now water tastes bitter, and coffee tastes like water.  What can I say?  Just praying that we find something that helps....soon.

Saturday, 20 October 2012


The diagonis is official. I have multiple sclerosis.....I called the doctor this morning to find out if they had my results and the nurses transferred me to him because he wasn't with a patient.  I was also looking to see if he could give me something for my symptoms since they aren't subsiding, but slowly getting worse.  The doctor told me all of my bloodwork came back normal or negative and that the MRI showed new lesions on my brain.  He then told me that this "confirms our diagnosis of MS".  I was told to start meds at the hospital today and go for them intravenously for 3-5 days.

Wow was that hard to hear!  I knew it would be, I just didn't know how hard it actually would be.  I went to my bedroom and cried harder than I have ever cried before.  Thankfully my oldest Cole was at a sleepover and the two younger  ones were downstairs completely oblivious of what was going on right now. In that moment I finally asked God "why"?  Why couldn't He make it better?  He makes people better all the time.  Why not me?  I know all of the Sunday school anwers, that God has a plan and He works for the good of those that love Him...yada yada yada.  I wasn't feeling a whole lot of comfort right then and there, I was feeling hopeless.  Like any small thread of hope was gone.  It was so final when I heard those words! 

Anyways soon after, Shawn took me to the hospital and I got some meds intravenously and if the symptoms aren't getting better by Monday then I need to go see the neurologist again.  I have an IV in my hand until that is done and it is not very comfortable :)

I am writing to you now because...well...I can't sleep.  I'm not even tired.  So when I say today I mean October 19th.  

I have had plenty of time to think and pray tonight and I do feel comfort resting in God's peace.  He is stronger than I am and I need to lean on Him right now for everything.  I know some of you reading this don't know what I am talking about but I pray that one day you do.  And I thank eveyone for the indescribable amount of support you have shown me!  I really do feel overwhelmed.  I have heard from many people whom I have lost contact with, those I don't talk to on a regular basis and new people all together!  So thank you, thank you, thank you!  I try to respond to everyone but it has been really overwhelming (in a good way), but please know that I have read EVERY SINGLE post or letter you have sent.

John 16:33 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

Thursday, 18 October 2012

Losing Independence

So I'm starting to understand that this is very unpredictable.  I had to cancel my volunteering engagement at the school today.  I think I bit off more than I could chew.  The last 2 days I felt great in the morning and completely exhausted by the afternoon.  Not just sleepy exhausted but my legs just didn't want to support me and my arms are really tired.  Today it's been like that since this morning, however I've still been out and about.  Now I need to do some more running around in a couple of hours.  I hope I can get through it all.

Yesterday I lost part of my sense of taste but only for a few hours.  It was the weirdest thing ever.  And it happened "just like that". One minute I could taste and then an hour later, I could hardly taste anything and I got extremely light headed.  I'm not sure what that was all about but it's worrysome.

I'm also getting really anxious for my results of my last MRI so I can start some meds.  It scares me that new things are happening and that it's not getting better on it's own.  It'll be 5 weeks tomorrow since this new bout has started so I had a good cry last night when I went to bed.  I don't really ask God why, but I get mad and say that this sucks!  I am quite independant and asking for help is actually just too much for me to do right now.  I just can't say that "I can't do it".  I don't want people looking at me weird when I ask for simple stuff.  I've had lots of people volunteer to help out but how do you ask someone to come over and do your dishes or wash your bathrooms or cook you food??  I just can't do that, I can't....Imagine phoning up your friend and saying "oh hey, how's it going?  By the way, can you come over some time and clean up my house?"  I hate looking normal but feeling so different!

I can, "just try" but it doesn't get the work accomplished fast enough to maintain a house. 

Wednesday, 17 October 2012

Just Try

So yesterday was a long tournament, hockey and I had to get the house in order cause people were coming over.  The boys helped out for about 10 min before school and then I did some cleanup for about a half hour.  Well once I got to the soccer field and had to walk ALL  the way across (lol) I realized my legs felt like jello and I was quite tired.  I wasn't as dizzy yesterday but I did almost fall down my stairs at home.  I have to realize that I can't turn around quickly...this is the 3rd time I've done that (once was in the stands at the rink) and let's just say "thank goodness for railings"! 

A big accomplishment though, was that I got part of the bathroom cleaned.  I know I said I was gonna do it 2 days ago but I never did get that far.  I say part of it because I still have the shower, but it was a feeling of self accomplishment and quite frankly if people weren't coming over I don't know when I would have attempted it.  I probably would have gotten one of the boys to do it, but they were all gone last night and couldn't help. 

So that was a bit of an epiphany for me, that I am probably feeling a bit sorry for myself and maybe a bit depressed in the sense that because I can't do things as well or as easily as before I won't do them at all....sooo the new goal is to TRY. If I start doing things I will probably feel better, because I feel like I am being useful again.  They can be small goals, like part of a bathroom. Just look at how much even something tiny like that has helped my spirits.

Thank you everyone for your encouragement thus far.  It really has been truly amazing and I've only just begun.... 

Tuesday, 16 October 2012


This girl describes it very well. She references quite a bit (especially at the beginning) to being drunk and taking drugs but in the end she does clarify that that is the best way to describe it.  Even though you may not have had those experiences you can imagine what it would be like based on people you've seen or movies you've watched. 

My experiences are not as extreme but are all present in some form except for the slurred speach.

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Monday, 15 October 2012

My Journey...

My name is Charis Parago. I am 31 years old and married to Shawn, who has blessed me and encouraged me through it all. We have 3 beautiful boys who are 12, 10, and soon to be 8 years old. This blog spot is about my journey with what is expected to be Multiple Sclerosis. I say this because I have not been "officially" diagnosed as I am waiting on my last MRI tests.

I'm not entirely sure what my intent is by starting this blog, but I hope it helps my friends and family, by giving them a glimpse of what it is like. This will hopefully allow us to go through this journey together, because quite frankly I have no idea what to expect either.

So I guess to begin, it started in January of this year. I woke up and my legs and feet were numb. Not all of it, but down the outside and it was very symetrical. After a couple of days I went to emergency (it was going to be a few days until I could get in with my doctor) to ask what was going on. The doctor told me to go home and just wait, and told me it was probably a circulation issue. After a few more days I saw my doctor, and he asked me if anyone in my family had MS. I was like "no" and thought no more of it after he asked me a bunch more questions about different symptoms, none of which I had. He wanted to do an MRI but I suggested that it might be something with my back because I have some back problems. He agreed to order a CT scan because I posed no other symptoms of MS.

This numbness continued for a couple of weeks and then went away. However a few weeks later it came back. Then one day while I was sitting at the hockey rink I looked down and felt a "buzzing" going down my spine. This eventually was what the doctors call an "electric shock". It continued and went down my legs. The doctor called me at the end of March and when I went to see him he told me that the CT scan showed nothing. I then told him about this "electric shock" feeling and he said that I needed to have an MRI to rule out MS. He was optimistic in the fact that I didn't pose some of the other major symptoms such as vision problems. So I agreed thinking nothing more of it and had my MRI appointment in mid May. During this time the "electric shock" started to move down my arms as well and the numbness continued to come and go, lasting about 2-3 weeks each time it came on. I continued to work and told only a few people just that my legs were feeling a bit numb. Not wanting to worry anyone and not thinking that it was anything serious, I continued as normal and thought eventually we will figure this out. Maybe it was something in my upper back? Maybe it was a circulation issue?

Well this is where the story begins...On May 29th the doctor saw me for the results of my MRI and told me that I have white matter or spots on my brain and that it was consistent with MS. He wanted me to see a neurologist as soon as possible. What?!! Had I heard him right? But I thought I didn't pose any other symptoms and that was supposed to be a good thing right? It didn't even hit me until I got into my vehicle to make the short drive home. I picked up Shawn from work and then started crying. Was I going to lose my ability to walk? What did that mean for us? For my family? I know now that I was jumping the gun, but I really didn't know that much about the disease. I went home and googled EVERYTHING! Did I really have this? Could I have this? Now you have to know that when you are talking to someone in person you get a very good perception of what they are thinking, so even though I had a lot more to do before I knew if this was it, I knew it was serious. There was stuff on my brain!

Of course the neurologist appointment came a lot later and I didn't have an appointment until the end of September! Wow that seems like a long wait! On the good side, the numbness went away the beginning of June and it hadn't come back through all of summer! Oh but I had gallbladder issues and finally ended up in the hospital for a week and had an emergency surgery! Well this was in the middle of September and I have my neurologist appointment on the 24th! This gallbladder surgery is what I believe triggered my latest episode. The anesthetist came in and told me that if I did indeed have MS, the anesthetic could bring on another episode. Ok so what? Maybe I don't have it? It haven't had any numbness or "buzzing" for over 3 months now. Well I woke up and my right hand and the right side of my upper body was numb. Great!

I was recovering from surgery and went to my appointment 10 days later to see the neurologist. He asked me a bunch of questions and checked a bunch of reflexes, etc. In the end he told me that lots of what I have could be caused by other things, if they were of and by themselves. However with the combination of everything it was mostly likely MS. "I'm guessing this isn't coming as a shock to you?" he says. "Well no, but it's just different when you actually hear it," I tell him. Now what? Well now he explains the different kinds, what he believes MS to be, because no one knows EXACTLY what it is and there is no test that can be given, so it's diagnosed by saying that it CAN'T be anything else. So he ordered an MRI of my brain, and neck with a dye in it and a ton of blood work. Basically all of this as a formality. Like I said before, when you are talking with someone, you know the direction they are thinking. This was another one of those times...He was telling me that this is what it is, but we need to do the tests, because "the only way it can be diagnosed is by saying it is nothing else."

So now since then, I have had my tests and am waiting on the results. My doctor has given me medical leave and wants me diagnosed and on treatments before I return. The numbness has spread to my chest, stomach, legs, feet, left hand and my back. Different areas have different levels of numbness. My right hand and chest/stomach area is the worst right now. I can move my hand, but the strength is gone and when I do something it cramps up. Everything that you do that requires fine motor skills is a challenge. Tying laces, putting in earrings, taking a cap off a bottle, holding a pen, putting on make-up etc. Even typing this difficult and I make tons of mistakes. I am at least a decent typer so I know apporoximately where the keys are supposed to be. It's not only the numbness though, but my balance is off this time. If I stand in one spot I feel tipsy. I stumble or almost fall over when I turn around or walk sometimes. I lose my train of thinking quickly sometimes. It's hard to know if that is just normal though. LOL But Shawn tells me that it's worse. I also tire easily when I'm walking. I think that's because the feeling isn't there and it requires a lot more effort to do anything.

There is so much more to write, like how this affects my family. My boys all know and of course it is harder the older they are because their level of understanding is greater. How does this affect Shawn? My mom, dad and my brothers? Do I ask God why? Why me? Is this numbness going to go away? It's been over 4 weeks now and it just keeps getting worse. Am I angry, sad, confused? How am I handling it all? I will answer it all later, but I wanted to start with my story and how I got here.

I will tell you I have struggled a lot more this last month, since the surgery, because it's all coming to a head. People now know, it's worse than last time, it's lasted longer, and I feel like I look normal but there is struggles with everyday things. We are in the full swing of hockey and I can't stand still to have a conversation with parents because I will fall over. I can't tie my youngests skates or goalie pads because my fingers don't work and aren't srong enough. Will I be able to stand up during their games and cheer them on? Can I fulfill my canteen duties? That's a lot of standing around and grabbing things! I know that people are there to help out but I feel like I look normal therefore I should be able to do the normal things. It's an inner struggle.

I need to give my hands a break and then try to tackle some sort of house work. So far I have only attempted laundry and dishes. Today I think it will be a bathroom, but even that is a daunting task to think about. Especially when you are not left handed.

Before I go, "thank you" to Shawn, who has been there through everything. I know there is a ton of stress to deal with between, hockey, work, my surgery and this!! Also to my immediate family, who I know are constantly in prayer for me. And of course my friends (especially Andrea!!) who have allowed me to share with them, cry with them and pop in on them at any given moment.

"I can do all things through Christ who strengthens me." Philippians 4:13