How I haven't broke (yet)

I am often told, "you're so strong".  But guess what? I feel anything but. I'll share some of my "secrets" to how I keep it together as much as I do. Which let's be real honest, some days is not very much at all.  I mean some days I have laundry done, dishes done, supper ready, kids and hubby cleaned, dogs played with and other days I keep finding pretzels all over my floor, I don't know what that is on my shirt, and there's toilet paper garland at about the 2 1/2 foot eye level because she thinks it's just SO fun! (She's so lucky she's cute.)

The biggest thing I can say and will always say is a mindset.  This is by no means easy.  It takes determination and constant awareness and honesty with yourself about where you are at mentally and what you need to do better.  And you'll never stop doing this.  It's a daily, sometimes hourly thing for me.  But the more you do it, the easier it becomes.  To start, read some self-help/improvement books.  There are several.  And most of the ones I love are geared towards direct sales, but can totally be applied to life in general.  Some of my top picks are:

    
(Side Note - those are affiliate links. Which means if you buy from clicking here, and then purchase as normal, I actually get a percentage of the purchase from Amazon.  So that's awesome too!)

Alright, so you got the books, now you have to read them.  Not a reader? Most if not all of them are available in an audio version or Kindle if you are techy. I prefer a physical book.  Nothing beats feeling a book in your hand and the smell of new pages! But there are no excuses here - read the books! Can't afford them, borrow from a friend or hit up your library.  (We still have those!!)

Which leads right into the next secret, accountability. You have to find a way to be truly accountable.  This means total honesty, even in the ugly parts. So if you have a bad day, slip on your diet, don't do something you said you would, you have to own it.  It's totally liberating. You are human. You will slip up.  Just the way it is. So however you are going to be accountable, a close friend, a journal, --whatever it is to you, be honest about it.

Next secret, Embrace it all. We all focus on "The Big Picture" or only the highlights and good times.  When in reality, the little things are just as important if not more.  Life is short. And nothing is promised except taxes and death.  So you have to find a way to find joy in the mundane.  And it starts by unplugging for a period of time. Trust me, just try it, for a while.

Which you guessed it, my next "tip" - don't try something and give up.  Giving up will always be the easier way. But nothing changes unless something changes.  Dr. Phil says you don't just try something for 2 weeks or 30 days.  If you really want to change, and it's really important to you, you try it until.  Until you reach your goal. Until you change your ways.  Whatever it is you're working on.

Next - take life as it comes. All you REALLY have to deal with is today.  No matter what.  Bill is due next week and you have no money? Loved one is terminal? You have a big surgery coming up? None of that is happening today.  So today, you do today.  Make small steps today to improve today.  And then tomorrow.  And work from there. 

And about today, today is 24 hours. And a lot can change in 24 hours.  So if 24 hours is too much and too hard to process and handle.  Then take 12 hours at a time.  Can't do that either? That's ok, because you're being honest! So then take one hour.  Sit down and honestly say, what do I need to do THIS hour to survive this? And then do that. Maybe that is talking to a trusted friend.  Maybe it's crying.  Maybe it is sleeping.  Sometimes, truly and physically surviving is all that we are capable in that short time frame, and sometimes, that's ok.  After you survive that hour, ask yourself what you need to survive the next hour. And before you know it, you will have done what you think you can not.

My last "secret" is to find the fun.  There is always joy and fun in everyday life.  And if you can't find some, make some. Because I'm telling you, no matter what is going on in your life you have SO many reasons to still smile.  And if you don't think you do, I honestly implore you to find some help.  Because the dark hole you are standing next to is a deep one that is hard to crawl out of alone. Go take a silly snap chat picture. Go sit at a park and listen to the children playing.  Sit in the grass while you feel the sunshine warm your skin.  Find some joy!

We often forget to deal with what's in front of us first.  We can't just go run a marathon tonight.  We have to train and learn how to run a marathon, even though we all know how to physically run.  Life is no different.  Train to be the best you for life.  And don't stop training.

Find the good

I have not posted in a while for a few reasons. One, I have been REALLY busy trying to juggle appointments for Jeremiah, work, and the kid's pre-school goings.  That said, I also didn't post because it was easier to avoid it somewhat.

Many of you know that we went to the ER last Sunday.   He was given a series of a nerve block oral med, a 5-day course of oral steroids (that is actually 6 1/2 days but whatev - I'm not the doctor) and then he also had his pre-scheduled MS drug infusion last Thursday.

The first full day home after we left the ER was a little rough. We learned that staying ahead of the pain with meds was crucial and I set alarms to make sure that he took his meds before so we weren't trying to play catch up to manage the pain. I think that's a man's mentality - tough guy, I can handle it, but when you can't you really can't.  He obliged my requests and took his meds with little vulgarity from yours truly.

The next few days went off rather quietly for once. He was not improving but he also was not having any worsening of symptoms, which at this point, is a definite "win" in my book.  Last Thursday he had the infusion, which comes with an IV steroid and again, he tolerated that very well.  No obvious or noticed side effects.  So far we are both really liking this option.  He won't have another infusion of that for another 6 months.  Which seems scary given how ill he is, but these meds do not necessarily repair current attacks, they only work to help lessen future ones.

Then this weekend happened.  He had no steroids to take and while I didn't think it would matter, it did. Almost like clockwork, about an hour after he would have had the steroid dose, he started to have pain.  We doubled up the OTC Tylenol as instructed.  It helped some but definitely did not alleviate his pain.  The next several days the rest of the weekend was much of the same.  It seems to come on suddenly and leave just as suddenly.  He still lets out little moans but otherwise fights the pain. And it's clear on his face he is.

We also had a "whoopsie, I'm stubborn and/or too forgetful" as he had a pretty big fall the other night.  He is SUPPOSED to use the wheelchair to get right up to the toilet, then transfer safely to the toilet.  However, he likes to see if he really needs to. But he also is smart enough not to test this when I'm awake, and thus why we continue to have these lovely middle of the night occurrences.  Turns out he does really need to, and he hopefully will remember laying in the tub where he fell, waiting for me to get up and come to rescue him the next time he wonders if he really needs to do it that way.  The old saying 'better safe than sorry' was definitely lost on that one!

He's been in the wheelchair for about a month now full time.  We realized this weekend that his limbs are getting "worse" and he even struggles to walk fully assisted. It looks like watching someone fully paralyzed try to walk - the legs and feet just don't.  I can tell he is trying to move them like he should, but they end up getting dragged and tripped up.   So at this point, I really do not know what to expect in that regard.  Many have asked if we need the ramp put back up, Mayo has told us not yet.  They are still hoping and working toward mobility for him.  So again, we wait.

Beyond that, his cognitive issues have rapidly declined. He struggles for words, even less advanced words.  He can't recall the names of things and tries to just describe them sometimes. Other times he does ok conversing and as long as he doesn't have to recall any info or details, he can carry on somewhat normal. I have started calling him my storyteller because that's very much what it feels like. He needs to continue to talk even if he struggles and its hard for him.  This is true for anyone. You must try to do what you think you can not do, or you will never do it. Simple as that.  If you don't ask, the answer is always no. If you don't try, you'll never be able to.

It is painful for me to watch this unfold.  Especially when I catch a glimpse of a photo of him the way he used to be, the way he is in my mind.  The person sitting in the chair fighting to not fall asleep or struggling through pain filled eyes to just have conversations with his family is not the father to our beautiful children or the man who took my hands at the altar.  We both have agreed I'm a better patient and he's a better caregiver. I would gladly give another leg if I could take this from him.  It's so hard to watch him deteriorate day after day, and the fear of the unknown is real. No one knows any of the answers to the questions many of you have asked or the ones that repeat in my mind as I struggle to sleep at night.

I just want you to all know, the doctors are doing everything they can and we are NOT dissatisfied with the care he is receiving.  They are not giving up on him, they are continuing to fight and try different treatments, he just has not responded yet to anything.  We are still hopeful for recovery, at this point of any kind.  And I wish I could report that he has improved. But it seems any recovery he reports (Saturday he said he felt like his eyes were better!) seems short-lived and fleeting. (Sunday he told me they hurt so much he was not able to even tolerate wearing his glasses).  I hope these small victories, even fleeting, are proof positive that his body still has the ability to fight the MS.  He's far to young to be going through this and our family was already deprived of so much time to just be.

My request today is this: don't take it for granted. Anything.  Hugs, reading, pains at work... all of these things are simple things that everyone, including us, take for granted because life is so busy and full.  But all of our things - even the bad, are reminders of good. Clothes so wet I have to change my bra when I get home from the little shower this morning means I was able to walk outside in the rain and have dry clean clothes to put on as soon as I arrive.  Waking up with a stiff neck? You were able to wake up and your body is still intact enough to feel that pain.  (Trust me, it sounds nice not to have feeling, but it isn't!) Your job sucks and stresses you out? You have the ability to earn money for yourself.  Kids are sassy? Great, that means you were blessed with a family and they are listening to you (probably) I could go on and on.  I challenge you to take the thing that seems like a problem, or a curse and find the positive and the good in it. It's there, you just have to look for it.

Another day...

For the first time since I started this blog, I'm not even sure where to start or what to say.  I'm exhausted.  Saturday Jeremiah spent nearly the entire day in his broken recliner.  Didn't even want to eat.  That evening I sat with him to really observe and check up.  He said he just wanted "to listen to the game, not watch" and he couldn't feel either arm.  I poked and pinched and he had no response. I asked him to make fists with each hand, and he only accomplished a sort of fist about 25% of the time.

Around 3 AM Saturday night/Sunday Morning, he used the wheelchair to get into the bathroom. When he came back from that I could tell something was wrong. He wouldn't stop moving all over the bed, even almost falling out. He was moaning in pain and there was clearly a lot of pain in his trembling voice. He managed to tell me that his neck and shoulder hurt.  I assumed he must have slept on it wrong and tried to find a knot.  He screamed out in pain as he wasn't even able to tolerate the slightest pressure.

He said he wanted to go sit in the chair, thinking sitting upright might provide some relief. about 2 1/2 hours later (around 630 AM by now) he came back into the bedroom and said he was not able to sleep at all and couldn't take it anymore, he needed sleep. He transferred to the bed where he immediately started crying out in pain.  He asked to go to the ER as the pain had spread down his chest and rib cage and it hurt to take a deep breath. I called his mom to come to get the kids and we went right over.

We got to the ER a little before 9 AM Sunday. And we would spend the next nearly 10 1/2 hours there.  They did a bunch of tests, as usual, we waited for neuro for about 6 hours.  And then again another for pharmacy as they sent his scripts to Florida.  Must be a subliminal message.

At any rate, they finally decided that the pain he is having is similar to what other's call "the MS hug" and it can be very painful.  They said he has two new and very active lesions on his C3 and C4 and that is what is causing the pain.  They told him very bluntly they do not want him on narcotics for the pain, and he would be in pain after the ER. But they don't want to mess with narcotics on top of everything else.  It's like putting a band-aid on something that needs to be fixed, not covered up. 

So he came home with a ten-day course of gabapentin and another course of steroids - this time an oral version.  He goes back in tomorrow for occupational and speech therapy.  He will go ahead with the second dose of the Ocrevus and we will touch base with his neuro team at some point this week as well to see if there is more to be done or changes to be made.  

The older two kids asked me today if dad is going to die from MS soon.  I still don't know how to answer that.. You'd think after having the same children ask me if I was going to die from cancer when they were 2 and 5 would have me better prepared for this. But it didn't.  

I also want to say a heartfelt thank you to everyone who has prayed, sent cards, shared our journey and anything else in between.  The big gestures and the small events, they are all appreciated and we are grateful.  I also want to encourage everyone to continue to pray, but to also find a small random act of kindness to give to a stranger.  You don't know how much of a difference your compliment or your buying their lunch could make.  And think of the domino effect you could be starting. 

A special thank you to those who have been supporting my business.  I can and am working by the besides these days! And it feels good doing both! Thanks again, friends! ❤

Who the heck is Helga?

So I forget that not everyone knows about "Helga".  Our 10-year-old is ... extra :) In a great way.  She loves to develop all these characters.  Sheila Spice. Olivia Flay. And Helga. Helga is the funniest in my opinion. She is an older Russian woman who has migrated to the US to live. And is learning all things American.  You can see all the personalities here:

Helga

Sheila Spice

Olivia Flay

These moments, this is why I love my life.  Because even in a fog of confusion on what tomorrow will look like, there's still plenty of good in every today! Happy Friday Friends! Enjoy!

Generations of Love

Our family survives on wit, inappropriate humor, understanding and forgiveness.  As a mom, I thrive on traditions and memories.  Some of my favorites as a child myself were with my Grandma Taubel.  I have always had inherit love and appreciation for my elders.  And I was also fascinated with their lives and their stories.  The things they had to overcome that seemed like just a foreign idea to me.  Like the great depression, a recession, buying a farm for a few hundred dollars and on and on.  My grandma taught me to live off the land, use everything you have/waste nothing and to make do with what you have.  The kitchen was our home field and she was an amazing coach.  I still to this day fondly can recall the way her hands smelled of onions or the fresh dough creation in the oven.  Or the way her from scratch soup warmed my entire body and soul on the cold winter days. (That's why Pampered Chef truly does resonate with who I am as a person!)  The way her voice sounded when she hummed "Jesus loves me" or how she held her rosary for our almost nightly rosary after supper.

Devout Catholics have many traditions.  And I love carrying on many of those with my own family today.  Using the same advent prayer card she used.  And saying the same sequence of night prayers.  Repeating her little sayings, "Upstairs, downstairs, inside and out" (that's how you brush your teeth, in case you didn't know!)   Her home was always neat and tidy, and actually clean.  She didn't keep her Halloween decorations up all year round like I do (I'm talking about the spider webs I never clean) and she always had a from scratch dessert "in case company stops by" - and company always stopped by! I loved our simple life on the farm.  It was hard work, but it was good work and fulfilling work.  I knew very young that I wanted to be just like her.  As I grew older, I realized I would never be able to be as amazing as she was, but even half the woman she was, would still be pretty impressive.

She died fairly suddenly.  We found her cancer and learned it had spread to every organ in her body.  There was not much they could even suggest and she happily accepted her ticket to judgment day.  We didn't wait long for her ticket to get punched.  From the time we found out until she passed was just a few weeks.  The timing of these things is never easy, and for her and I, would have never been enough time. She and I were just starting to go through her boxes of pictures from when her children were little, writing down her recipes, and journaling her life, to create a memoir of sorts, when she passed.  It's not done, and it never really will be now. But I still treasure what little we have.  One of the very last conversations we had, when she was still of sound mind, was this, and I want to share it with all of you.


"Amber, I don't want you to make the mistake I made.  I want you to enjoy the time with your babies.  All of it, every minute. I don't want you to worry about the mess in the sink or the fingerprints on the window.  That stuff can all wait for later. But once the time is gone, you can never get it back."   The more that I experience in my life, the more I realize that the things that make the biggest impressions on us are not the large grand gestures, but the small loving things.  I can't afford luxurious vacations or world traveling.  Even if I could afford a vehicle and college for all of my children, I don't know that I would anyway.  You learn very little when you are handed something.  You dont get the joy and the life experience from earning it.  Which means you are not able to pass that lesson on and pay it forward as easily either. I want my children to feel the pride in knowing you worked for something.  And even the disappointment when you don't achieve your goals.  The motivation to work harder next time. And the humility to know that it's ok, as long as you were honestly giving your best.  I want to give my children the same memories and traditions that I was given, that's what I want for my children.

Only Mom "fishes" like this...

Life is so funny, isn't it?! One minute, you're reaching your goals, checking stuff off the to-do list, finding a missing shoe (your own..) and the next minute you're fishing baby 💩💩 out of the bathtub and scrubbing lets-not-guess-what from the bottom of the fridge.  Yes, that is all true.  I lead a glamorous life, you guys!

I have nothing inspiring to share today.  And if it weren't for my Thrive, this post would contain multiple lines of the same letter.  From my forehead hitting the keyboard as I fall asleep in my chair.  Last week was ... a lot.  One day to the next, drastic changes.  That's how MS is. You just never know.  Things can change slowly over time and be subtle, or they can smack you in the face like a freight train.  Not the big ones, but like the kind that fit in a 5-year-old's hand - still hurts though...


Jeremiah's vision is still returning, slowly, but we take it! His balance is coming back even slower. I think, could be wishful thinking on my part. But we survive on wit and optimism here! He can walk longer distances with a gait aid if he's not worn out. And that has become our new challenge.  Him not overdoing it.  Like the other night when I said just go around the block and he walked down to the ball field instead.  (It's a Benike thing...) He said it went ok but that last 2 blocks home were a little dicey.  Men... 

We attended Corn on the Cob Days parade, which again proved to be a bit too much and he's almost been in bed since... even still.   Today we start the joys of therapy. He hates it, but I know personally how much it is needed when you're the patient. And it is needed.  Last night he needed to use the bathroom and decided he didn't have time for the chair. Tried to walk and fell right over.  Into a pile of clothes and stuff.  See, we are messy to save lives, not because we are lazy! ugh!

The kids are doing ok.  Lots of emotions right on the brink.  Our families have been wonderful in helping with them, taking them, making them feel like normal kids.  Olivia is desperate for school to start and that tells me how much they are craving some normalcy.  While I actually like having them at home (most of the time) I can understand the feeling.  I would love our boring and routine days back!

I want to take a moment to thank you.  For reading this, for sharing it, for commenting below. I'd thank you for becoming a follower, but I don't know how to install one of those pop-up thingys that asks you to follow it, yet. ;)  For your support, prayers, and generosity - we are so very blessed to be surrounded by so much love.  And I can honestly only think that his recent improvements are from those thoughts and prayers! Happy Tuesday! And here's to a poo touching free day for all of us!

Forward Momentum

Science was not my strong suit. While I really enjoyed it, I just struggled to grasp it as easily as I grasped other things, like words and writing 😆 But I do see science around me all the time.  Have you ever tried to stop something with a lot of momentum? A pool ball after being struck, a baseball bat mid-swing, maybe a dog after that squirrel. And have you ever tried to start something to move alone? Like your car out of the road when it won't start? The kid's play equipment you are SO sick of mowing around. Setting something in motion takes a lot of effort, but stopping something with forward momentum can be quite difficult.

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That's a great way to look at the trials in our lives. I will be the first to openly admit that the last week, I had several days where I felt like how much more can I handle? How do I know what a mental breakdown will feel like?  Maybe it'll be nice, I don't think they make you take care of other patients in Generose... But then I realize, that it is always much harder to start again if you have already started.  I'm well known for saying, "no, let's just get it done." when asked if I need to take a break from a task.  Because I know that if I go sit down and rest and my muscles and energy levels cool down, then so does my momentum and my drive.  This is a fine line. You can't just waste all of your energy trying to do things in a hurry. Because things done in a hurry are rarely done right.

Jeremiah's health is like that.  He's been receiving steroids since we went to the ER.  A dose each day.  And will tomorrow as well.  They seem to be helping. He reports better vision and tonight I made him push the kids in the stroller around the block.  Man, was that hard! Also a fine line between pushing yourself a little further for betterment and overdoing it! After he nearly fell down the porch twice he was excited to do something normal for the first time in a long time.

If you have talked to him in person recently, chances are he said something that didn't seem entirely right or maybe a little off.  He's still not having a ton of luck with his memory issues. Cognitively words still escape him.  He told me the meteorologist he saw in the ER made notes in his file! ha!  At least he knew that was the wrong word! His speech patterns have improved, but certain sounds put together are still hard.  He is improving on the "drunk tests" some, which is encouraging!  

We feel your prayers.  And your support.  We try to answer each message, comment, share.  Please have patience with me, I'm REALLY behind! :) I encourage you all to pray for someone you do not know as well. Pray for someone in a similar situation to you, or us, or maybe something you don't think you can handle.  So many people in our lives feel so alone.  For whatever reason.  We may not know what their struggles are, but that does not mean we can not pray for them.  Because with 7.6 BILLION people in this world, I promise, no one is alone.