Justification

I still struggle with feeling the need to justify myself to others.  I don't deal with insults or rude remarks but sometimes its the questions people ask.  I answer, but feel this need to have them understand and to agree with me.  I want so desperately to have someone understand exactly what it is I deal with.  Why I can do some things and not others.  Why I do or say the things I do.  This disease is so complicated.  Mood swings, slurred speech.  Things that you would just chalk up to being grumpy or mixed your words up (haha).  Forgetting things like meeting your friends for a date.  It's not that I don't care or that I'm caught up in my own world.  I feel like these things are getting so much worse and it's harder for me to act like myself.  There are days when I just want to stay away, to be in my own world.  But on the other hand there are days when I can't stand to be myself cause I'm driving myself crazy!

 In some aspects of this disease it feels like a mental illness.  They say it causes depression.  I'm not depressed because I have MS but there are days where I think I feel that MS is causing the depression, much like a drug can cause depression.  Don't get me wrong, I'm not depressed but I have days that I feel angry and short fused and I know it's because the MS is causing it.  It's not a conclusion you can come to overnight because you need to take in many other factors.  See there I go again....feeling the need to justify my conclusion. 

I'm frustrated and feeling pretty alone in this battle right now.  There are things that are going on in my body.  I know things aren't normal right now and if I was to have an MRI right now I would bet money that I have "active" lesions right now.  I just really really wish that I was normal again.

What does it really mean?

What do I think of research?  Do I believe they will find a cure for MS? Those are tough questions because I don't have a straight forward answer. 

People come knocking on your door. Others phone. Everywhere you go it always seems like there is some other charity or cause to give to. So what does it mean when you give to a cause?  It depends I guess. Depends if it's something near and dear to you or just an obligation or in support of someone. 

Sometimes I feel like research is futile. Cancer is still out there, Aids, Diabetes, Heart Disease etc.  But when it comes to MS it is now something that is obviously near and dear to my heart. Was it before?  Nope!  I didn't even realize what it was. It was just something I had heard of before, and I had many misconceptions about it. 

Last year I decided to start a team "Grace" to participate in the MS walk. I had never done anything like this.  Little did I know that this team would grow to over 30 members and raise almost $10,000!!  The Morden coordinators were shocked. We were in the paper, and my husband was interviewed on the radio.  And in all of that it helped me. I'm not used to having people know how I have something wrong with me. The interview with the paper and radio was something my husband did because I just couldn't tell them. I couldn't say what wrong. I felt ashamed. I felt like everyone was now staring at me and it made me uncomfortable to ask people for money. So what did I do?  I "Facebooked" it....a lot!!  What happened?  We raised a lot of money!  Even if I annoyed the heck out people! Lol. And the next best thing was was that I felt support. It was more than just the fact of people giving money. It showed that people actually cared. People I had not seen since high school, people in the community that we had only been in for 2 years gave us money from their wallets. Hard earned money that could have been used on so many other things. They gave it...to our team...in support of me. 

Research for MS has come a LONG way. More so than many other diseases. Medicine from 20 years ago has changed the course of MS drastically. So yes I have hope. And not a fleeting kind of hope but a strong hope that there will be more breakthroughs giving people back their quality of life. 

So when you give know that it means more than just the fact of raising dollars. It shows the person you care. No matter who you are or what you are giving to. It matters to someone. 

To make a donation or to join team Grace in the Morden walk go to 

www.mswalks.ca 

My Heart Breaks For The Man I Love

I'm struggling with what to call this post. In some ways the inevitable has finally happened. The walls of Jericho tumbling down may seem excessive but somehow fitting.  The mighty giant has fallen?  That too seems a bit exaggeratory.  However I hope you can catch my drift.

We've all heard the saying of when life gives you lemons, make lemonade.  That's easier said than done.  It sometimes feels like it takes the length of making wine. And hopefully when it's finished it tastes good or you waited that long for nothing. Okay enough with the metaphors. Especially since I don't even like wine.

My husband has finally let this hit him. And now he has a to take the road ahead. A road that not many have travelled. I have. It's tough. Every day is a decision. Not to be angry. To get out of bed. To put one foot in front of the other.

Asking God "why?"  I'm not sure what the stages of grief are but I know one of them is anger. Probably the biggest one that I've had to go through. Questioning God and just being plain mad!  I don't know what the days ahead look like. I don't know how to help him. I don't think I can other than to be by his side like he was for me and to pray for him. 

There were two devotions I read today (because I missed yesterday). And oh how fitting they were.

It's almost a relief to finally know that he feels something!  But it breaks my heart because I know how much it hurts. I think I know now what to call this post. 

Reflection

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.

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. 

Broken

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.

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.