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.

"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. 

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.