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.

*********************************************************************************

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.

*********************************************************************************

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 

A Vanishing Mist...

"Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

- James 4:13-15
                                                                                                                                                                                                               

I am probably the worst at setting big goals and pushing my own agenda to carry out "my plan". I've talked a lot about it. It's a problem that I'm working on with God. (Work in progress.) I can relate a lot to the people James was scolding in the verses above. 

I like having a plan.

I feel safe with my plan.

I'm a planner by nature.

But this week in the last 36 hours or so, after learning that my Grandmother passed away, really puts these verses into perspective. Sometimes life does not play by the plan.
                                                                                                                                         

My accomplishments, degrees, plans, though meaningful and purposeful, don't change the fact that I (we) am but a "mist that appears for a little while..." 

For some reason, I can tend to forget that truth sometimes. I forget that vital piece of knowledge when I make my long term goals, or write in my planner (with ink) what I'm scheduled to do for the upcoming days, months... I even have a cardiologist appointment made for the year 2020.

Tomorrow is NOT guaranteed & I should live and love like it's true. (This does not mean I should lose my mind and do whatever I want... but TRULY live and love because Jesus set me free.)

I'm not a procrastinator, but I am someone who (as mentioned earlier) can get so caught up in making plans that I can sometimes forget about here, now and today. Forgetting the question that James asked, "What is your life?" 

What is your life? 

What is my life?

Making plans and having goals is not a bad thing, but my plans a goals are not only what this life is about. 
                                                                                                                                                                   
Seriously, go tell someone you love them, that you're proud of them, and pray for them. 

I terribly miss my grandmother (beyond words), and through her passing I was given the reminder to not take tomorrow for granted as if it is automatically guaranteed. 

Dealing with the death of someone you love is not easy. But as I process this, I'm thankful for her life and thankful that God is right here helping my family through this.

Love you & missing you, Grandma. <3333

The Valleys, the Mountains & Delaware.

We (the fam and I) had a pretty normal weekend for us: Played outside, I had my third IVIG treatment Saturday afternoon, I made steak, we planted some basil in a cool plant box thing, and I tried to pop yet another wheelie (keyword is "tried").

It was a good weekend and I was able to finish the IVIG treatment without a major migraine. (Also, both myself and Toddler were no longer dealing with sinus infections.) We were finally back on top of our mountain.

 It's nice up on that mountain. We haven't been on that mountain in almost a month.

That was Monday, yesterday. About 21 hours from right now.

Right now, we're back in the valley.

It's muggy, humid, and hot and it makes me have the "stress sweat" that those Degree Deodorant commercials talk about (it's a real thing for those of you who are confused).

Toddler and I both woke up grumpy as can be. The AC didn't kick on and we woke up because we were hot. Sure, it was only 74 degrees in the house, but to us (I have a medical reason and she's two) that's SUPER uncomfortable. But, I handled it. I got her up, grabbed a cool towel, turned on the AC, grabbed a fan, and my mommy game was strong.

I was on a detour on my mountain, but still there hanging out.

Then I got the voice mail from a bank all (allllllll) the way in Delaware , saying that I needed to call back right away because my bank account was being hacked.

??? (WHAT?!)

I've never been to Delaware. I'm not even sure where Delaware is, to be honest.

I called the bank back exclaiming (trying to maintain some composure with cranky Toddler clawing at my face the one time I'm on the phone), that "I have never been to Delaware," "I have no account there," "Heck-NO! I'm not giving you my social security number over the phone because I don't know you," etc etc etc... for almost an hour.

Through all of this, I was still trying to hang on to that mountain top. Trying desperately to cling to that happy-high,  while my wheelchair was being pushed to the edge.

But then I forgot to check the weather forecast before going outside.  And if you have Multiple Sclerosis, one of the more common issues a lot of us deal with is good 'ol heat sensitivity . For me, exposure to a hot shower often leaves me more weakened than I was before the shower, which isn't a big deal because I shower before bed and Husband is always willing to help me out (he's a cool guy).

 But Michigan's heat is a nasty, heavy, humid heat that makes my body (brain, mouth, vision, etc.) go haywire.

I could tell and feel that things were going downhill. My thoughts weren't as clear, I couldn't talk, I stuttered, I was a mess and the more I realized this, the worse everything became. Part of me hopes that others saw it as well, because I hope I don't appear that way on a good day/moment (#realTalk).
                                                                                                            

With everything that happened, in the valley or on the mountain top, the one thing I need to remember, remember, remember (like how I breathe and blink) is, God is there both high and low.

One of my favorite song lyrics from the song, Hope Now ... "how quickly I forget I'm Yours" (by Addison Road).

I'm sitting here freaking out and praying, "God, I seriously am NOT in the mood for all this today. Yesterday was such a good day , I haven't had a good day in such a long time and "poof" it's gone. GAHHHHHHH!!!!"

And the truth is,  I know that whether I am on a mountain top or deep within a Michigan-style humid valley, God is right there.

 I know that regardless of my previous day or how I feel that morning, I must start every by thanking God for a new day, for the strength that I have, for the mobility I have, for the home I have, for all the blessings I have. I must learn to always lean on Him to get me through the good and bad.

 I know all of this, but I quickly I forget who's I am and who I am. Anyone else like that?

Each day is a new day with its own gunk. Sometimes it's leftover gunk mixed in with the new, some days the gunk pops up from a random bank in Delaware (I need to find a map).

 I can never know what these temporal days will hold, but I do know that I'm not walking (or rolling) alone.

Life lessons are learned everyday through everything. Stop putting stock in feelings (happy or not), but put it all down for a God who never changes. (#truth)

(Rocking my cooling vest to bed tonight.)

Til Death Do Us Part...

I wrote the first part to this blog, "For Better or Worse...", with Endless Pursuit (check it out here)
 a few months ago. 

Here's part two:

"However, each one of you also must love his wife as he loves himself, and the wife must respect her husband." -Ephesians 5:33

Entering into this journey of marriage, I had no idea what to expect. I had some great ideas for what I wanted my marriage to be and what I wanted it to look like (and what I didn't want), but like most life "experiences" until you're IN it, you really don't fully understand.

As a Christian, I know that the model of marriage is one of the most beautiful things that God designed. For King & County's lyrics of, "Some sort of magic how two can turn into one..." beautifully exclaims that intimate bond between husband and wife, but as we all know staying bonded together is a lot easier said than done.

When you add sickness and the stress that comes with that, on top of the everyday life gunk... you really start to learn that in order for your marriage to survive in a world of 50% divorce, you have to fight for it. Loving each other threw the mundane parts of life and to liking each other at the end of the day, means that we have to fight for it. Movies make it seem easy to do, but reality is that it's not.

Marriage for us means praying, forgiving, giving, sharing, sacrificing, throw-up bowls, hospitals stays, medication, ice-packs on sore muscles, band-aids on toes (I have a hatred of cuts on toes), and the list goes on and on.

There is so much amazing good, but only if we continue to really push through for that. We have learned so much, but have still so much more to learn and so much more to grow.

Today, May 15,  we celebrate five years of marriage! We celebrate, we rejoice, we dance because we are thankful that we have each other as life partners on this crazy, life ride. Five years of forging two lives into one. Five years in on a lifelong journey, til death do us part.

(I love you, Husband. <3)

(P.S. Happy Birthday! :) )

Walkers & Doll Strollers.

I can still remember sitting up in my hospital bed, looking over the Doctors notes and wondering, "How am I going to be a mom after all of this?"

For whatever reason (most of which I have only shared with God and those close to me), I have been on the search of perfect for a majority of a my childhood and into my adolescent years. Maybe one day I'll write or vlog about my experience in foster care being the oldest child of a sibling group of three... but for now just know that a lot of those experiences shaped me in ways that made me strong,  while at the same time making me afraid to be weak

Afraid of imperfection.

Afraid that if imperfections showed in me, that somehow I would be loved less. That somehow, being perfect would have made my mom stay in 2001. That perfect was the solution and to never fall short of that. Coming out of The System I felt the need to prove myself as a young, black woman who did not grow up in a typical manner to everyone else looking in. I have always been strong-willed with a sense of what I wanted to do, and for the most part, I have accomplished the goals I had set forth for myself. I made it a point to do that. (I had my first job at 14 to save up for my Grand Am.)

I wanted to go to college, graduate and become a social worker (which I did, despite Multiple Sclerosis) but for what? And for who?

I was talking to a friend recently about my story; Life before MS, before the two miscarriages, before the fibroid removal surgeries... my life. And she called me something I have heard a lot in the past 25 years; An old soul.

I have been thinking and praying a lot over the last months about my purpose. I was so sure that I knew what it was and that the path I had picked out for myself was IT. But, while in the valley of MS-attacks, I have really learned that my plan may not be Gods plan. I'm learning to let go of perfection and embrace imperfection because for me, it makes me depend on God more than myself.

My thoughts of, "How am I going to be a Mom after all of this," was fear of imperfection. Fear that those looking in would point out what I was doing wrong and what I couldn't do and how I was not being a good mother because of MS and the wheelchair. Fear that I would not be good enough. Fear that I wasn't good enough.

Fear that I would not be able to be the mom who needed a walker to stand, while playing with her daughter and her doll stroller.

Fear is a great liar.

Knowing that perfect isn't the answer to my problems has been the key to unlocking me and my heart. Having faith in God and writing his truths on my heart has been what really makes me strong.

Maybe my legacy isn't going to be that of a former foster youth who made something of her life against all odds. But, a mother who prayed and pressed on in faith through trails and disease who raised a daughter to do the same.

A daughter who remembered playing with her doll stroller, while her mommy practiced standing.

Letting go of the past to press on towards the true goal in life. (Philippians 3:12-14)

I Woke Up Like This...Exhausted.

Fatigue /fəˈtēɡ/: extreme tiredness, typically resulting from mental or physical exertion or illness

Lassitude (MS Fatigue): 

• Generally occurs on a daily basis
• May occur early in the morning, even after a restful night’s sleep
• Tends to worsen as the day progresses
• Tends to be aggravated by heat and humidity
• Comes on easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities (National MS Society, 2015)

This is what I dislike most about MS, the 1:30 debate in my head of whether or not I should cancel our plans for the evening because I woke up exhausted. Even though I slept well (for at least 8 hours), I woke up feeling as if I haven't slept for days.

The dislike of this MS-fatigue is a two-parter... I dislike ,with a passion, how I can't seem to explain this to others. When I try to come up with an analogy that can somehow bridge the gap between their world and mine, it always ends with the listener having a puzzled look on their face. And questions of, "aren't you taking medication/did the treatment not help/did you have some coffee yet?" etc, etc , etc. (Followed by me trying to explain that the treatments will not stop the symptoms from happening, but that they are just there to help manage the symptoms. BUT, they may or may not help all of the time. AND that no amount of sleep can help dissolve MS fatigue or other symptoms completely. etc, etc,)

To put it simply, there isn't a simple answer, really. Though I do have somewhat of a grasp on managing symptoms and MS, it's still like being a merry-go-round (in a tornado with hands that aren't strong enough to grasp the bar tight enough.) 

I have to take this day by day, hour by hour. I have to try to not feel bad for having to cancel plans because some days, most days honestly, my body just "can't even"  with anything else other than our day to day routine. 

My IVIG nurse have me some great advice the other day... she asked me, what would I expect out of someone else in my situation. I said that I would expect that person to do their best, give the rest to God and take it day by day.

She told me that I need to give myself those same expectation. Nothing more, nothing less. (I have the best nurses :) )

When Life Throws Lemons...

Life really likes to throw sour schemes into our sweet dreams. Doesn't it?

Today was one of those days.

Husband had planned to pick up Deb, our '99 Dodge Durango, that was (FINALLY!!!)  fixed. We have been planning to sell her for a couple of months now. (She's too high off the ground to be useful for our family. Though, I will miss her sweet sound system. )

The plan was for Husband to catch a ride with our neighbor to the repair shop and stop at the grocery store to pick up some bacon and bring it home (literally) for a glorious Breakfast Feast.

I'm talking, BOMB-dot-COM, yummy breakfast, because that bacon was to be paired with some scrambled eggs, lightly buttered, toasted to PERFECTION, cinnamon swirled bread, and a cup of hot (but in my case, room temp) peach tea.

(It's a really good breakfast.)

But, 7 am came and went. Then 8 am came. And with that, the Toddler woke up (like clock-work)...And then, 8:30 came. No Husband. No bacon. No lightly buttered, toasted to perfection,  cinnamon swirled bread in view (or in my belly.) I got a hold of Husband and soon found out why he and breakfast were both MIA.

The fixed truck had died.

DIED.

He was on his way to the grocery store and Deb wasn't driving like a newly fixed truck. She puttered like a wounded, old soul. Husband (being the smart man that he is) turned back around (not far from his starting point) and drove her back into the lot where she died.

DIED.

Some back story on our adventures with Deb this year: She has had a new alternator, rear break lines, and a brand spanking new battery put into her all within a 2 month period. We've had Deb for almost three years and we haven't had ANY issues with her until 2015. Even after the three new fixes, Deb was having issues holding a charge when the battery was connected. We learned the day before that power was being drained away from bad fuses in two areas of the truck. They were disconnected and we were free to bring her home.

But when she died on her way home, after being "fixed" (again)... that was not part of the plan.

(NOT PART OF THE PLAN!!!)

Husband didn't make it home until 9:30, which in our house (and with my 'energy conservation' self) is like half of the first-half of our day gone (re-read it... it makes sense.) And, with Toddler all having a crazy energy explosion (with ATTUTUDE and huge vocabulary) we needed to get out of the house. We decided on taking her on a outing the children's museum downtown in a attempt to salvage the day, but apparently every other parent in West Michigan overheard our plan and made it their own.

It was CRAY in there. (I've never seen so many stressed out parents in one place before.)

Next, we lost the parking slip and had to over-pay for parking (grrrrr.) It was down pouring from the Heavens as if someone let the tub overflow and was like, "Meh, let it flow, let it flow..." Which then caused the sun roof of my Grand Am (Amber :) ) to leak...And Toddler particularly enjoyed trying to jump/lay down in every puddle that crossed her path.

(Soooooo NOT PART OF THE PLAN.)

....


All this to say, what happens when Life decides to downpour on your parade?

When Life chucks a bushel of lemons at your already bruised and broken-down soul?

You grab those lemons, rinse them off, and repurpose them.

I feel like my story is one that shows how God can repurpose something unwanted, ugly, and awful; into something and someone who is wanted, beautiful, and absolutely amazing. A story that can be used to help others, but most importantly a story that can be used. It may not be pretty, but God has a way of turning ugly things into beautiful things.

And, we have to make the choice to do something with the Lemons.

So, after a very eventful day full of mishaps and adventures, we end the day drinking tea with a lemon slice on the side. Repurpose it.