Hey Blog, Hey!

Seriously long time, no update or anything.

Mommy Blog FAIL!

Alright, so here we go: I’m going to write a super quick medical update, PLUS some things that were on my heart.

 *also, pardon my rusty blogging... I'll get better.

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Post rituxan, things are pretty much the same.

To answer the “what comes next?!” I see the neurologist in the summer and then we’re not sure. This drug was being used off label for the progressive ms.

The “theory” is that killing all of my b-immune cells down to zero would hopefully stop disease progression.

Keyword is hopefully.

If not, then we’ll cross that bridge when we get there.

I still deal with the same old list of damage I was dealing with before Rituxan: Example: random, patchy numbness/pins and needles sensations throughout parts of my body from head to toe. Hyper-reflexes in limbs. Poor coordination and muscular fatigue in wrist (right)/ankles/hips/some of my fingers on both hands caused by neurological damage only after a short period of time of use (muscle fatigue). Overall exhaustion is still there. Lack of balance, etc etc etc ETC (the list goes on.)

Still falling when I "walk", still trying and still getting up when I fall.

Still dropping  ALL THE THINGS like it's my job.

Eye still twitches and heat is still an enemy (I want snow. stat.)

Pretty much my body, due to damage done from the disease, simply does not do what it is supposed to do. And yes, we’re doing everything we can on our side (we know a lot about this disease, my body, treatments available, etc. We’re up to date on what’s happening.)

It’s a game of waiting and seeing. And, so we wait.

We have been asked numerous times from FRAMILY “what can we do to help?”

And at times during a crazy crisis mode (i.e. random hospital er trips) we needed things like food, someone to snuggle the cat, etc.

But as we move forward, we don’t see ourselves in a crisis and we haven’t for a very long time.

Our point , when we decided as a family unit to share our story, was not to make our life seem extraordinarily difficult or as if we were powerless at the mercy of some invisible monster that had taken control of every aspect of our family. While it is unfortunately apart of our life, it is not our whole life. It’s just a thing we have tagging along and causing some chaos until we go home. 

We’ve had peace in that and frankly we can even say that this battle has made us better. And no, we’re not going to paint a picture of peaches and daisies BUT we’re also not going to smudge a picture of doom and disaster.

Our life is being beautifully lived as we travel through the ashes. God's still good. We can say that because we know that as truth.

Sooo, with that as our backing we have answered “we’re good” or “we’re fine” because we are and we don’t need anything.

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BUT, I think we have some ways finally as to how you can “help” us if you want:

We don’t need pity, we need your prayers: we know for a fact that prayer is powerful. We are living that testimony every day. If you are feeling like you REALLY want to help us out (i.e. if you’re the type of person where “helping” is the thing you like to do), this is the #1 thing we need. On a daily basis.

More than any other material thing.

Pray that our marriage thrives, pray for our family to thrive, for our future children, for our faith to stand strong against the schemes of the enemy.

We don’t need your pity, but we do need your prayers.

Don’t feel sorry for us & don’t be angry on our behalf:

 That is not what we want or need because we make a choice to not live in that place.

And not to make light of how difficult this disease can be (we know), we can’t stay focused on how bad it is. Or how hard it is. Or how (insert negative emotion) it is.

We don’t ignore the difficulties, we just make a choice to live.

This goes with the section above but helping us is not feeling sorry for us and not being angry on our behalf. Anger solves nothing and pity is pointless.

Preserve our family unit/ team:

 Husband said something very powerful a few nights ago. He told me that we are the closer now than we have ever been before.

Our family has flow and a rhythm.

Husband works everyday outside of the home (and sometimes in his basement cave). I’m rocking mom-life with cooking, cleaning, homeschooling toddler preschooler and all the other things that go into taking care of a family.

We just do our thing a little differently.

Please don’t look at our life as being at a disadvantage because it’s not.

Please don’t see me in need of “care” like a child because I’m not.

We are learning and have learned to embrace the hard things. Allow God to refine us and mold us as we walk through the fire. Hand in hand.

As a married unit, we're understanding how important it is to "cleave" to each other. To be strong together. To really be one and what this marriage partnership is about.

We need to figure this out together. It's important. It's real life.

Help us to keep and preserve our family unit.

It’s not me or you, but it is what it is:

There will be times where I will not be able to do things. Every day, my body starts running on an empty tank around 5 or 6 in the evening (running on empty as in, the struggle becomes very REAL and I am in need of the struggle bus to pull me to the couch.)

We’re ALL ABOUT Daniel Tiger over here (and if you don’t know Daniel T, you should.)

As Daniel Tiger, my physical therapist and medical crew have stated “rest is best, rest is best” and I need to do that. (Despite the fact of me hating to do it, it’s what’s best for my body and for my family. #EnergyConservation)

Part of the equation is that most of the time “rest time” means alone time with our family just doing what we do. Maybe an episode of Daniel T and his crew, maybe we’ll play a game, or perhaps the cat will get his snuggles in… but its rest my body needs.

Also having people over can be exhausting even if I don’t have to cook or clean or entertain them.

Try to understand that it’s not me or you, but it is what it is with this thing.

So that’s it! This was not my best blog, but I’ll get back into the flow and will try to write more.

It’s good for my heart and hands (yay physical therapy!)

I seriously need a shower and will be taking advantage of Preschooler sleeping to do so. (And my brain feels like mush right now… #momlife).

Thank you to everyone for reading and love to you all! <333