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.

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.

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.