I...

This post won't be for you.  It's not even for me really. It just ... is.

I feel defeated.
I feel pain.
I feel sadness.
I feel anger.
I feel stress.
I feel lost.
I feel scared.
I feel confused.
I feel unsure.
I feel untrusting.
I feel numb.

I need my life back.
I need my kids to be ok.
I need new tires on the truck.
I need my husband not to be deteriorating daily right in front of us.
I need to dig down deeper than I ever have to find the strength I didn't know existed.
I need to be the mom my kids deserve me to be, the mom I used to be.
I need to not be afraid of the worsening ataxia and the looks of sadness in his eyes.
I need to not be so far in the red by mid-month every single month I consider desperate things.
I need to make sure that Jeremiah's getting the best care he can.
I need to make sure that I provide the best quality of life for him I can.
I need to trust that this will all be ok and remember that I am not alone.

I want to remind you life is precious - embrace it.
I want to remind you time is so fleeting - hold on to it.
I want to remind you, you're not alone- look around you.
I want to remind you to find the blessing in the curse - pray about it.
I want to remind you children are so innocent - LET THEM BE!
I want to show you there is kindness in the cruelty - just find it.
I want to lead by example that we must find positives in our day - they're always there.

I will hold onto love.
I will keep perspective.
I will embrace reality.
I will cherish smiles and memories.
I will always be thankful.
I will always pay it forward.
I will always be true to myself
                                    - even if that isn't the most popular or likable.

It's hard

The long stark white hallway has an odd smell I just can't quite place.  I listen to my footsteps echo down the corridor, my tennis shoes making their own separate sounds.  I guess a fake leg doesn't sound the same as a real leg when walking.  I can't help but be taken back by the beauty that surrounds me at the Saint Mary's campus as I make the somewhat long trek from the patient drop off to the Domitilla Building. Thoughts swirling around in my head, fleeting from very relevant thoughts to totally random.  I find comfort in seeking out the small details that most wouldn't notice.  That woman had silent tears streaming down her face.  That person was clearly in pain you can't see.  The snowflakes on the windows in the garden area froze perfectly along the grids.


I want to write here more.  I see so many people when I'm out and about and nearly every single one of you has commented on how much you enjoy reading my words.  Which feels so good. I am the eternal analyzer.  I need to hear something and digest it and consider it and all the possible scenarios, and outcomes before I "talk" about it.  This situation with Jeremiah has quickly become my Achilles heel.  Be torn by what I know to be true in my head and what I feel as emotions in my heart... watching what I can not see, but only feel.  Seeing what I hate and missing what I love.  The turmoil inside of me that is inexplicable simply due to the fact that I feel like we are on a maiden voyage.  And for the history of this family, we are.  We have faced many things - miscarriages, cancer, amputation, surgeries, house fire, pediatric epilepsy, high-risk pregnancies and more.  But this... this feels like the biggest.

I am also the "protector". I feel as though I see people's best qualities despite the ugly ones they may be showing off.  And while that sounds like a great quality it actually feels more like a downfall.  I want to keep everything "nice" and make sure everyone seems "happy" and I want to protect the image of what I think we are in my mind from the rest of the world.  I also have some empath qualities and so when someone says something to me, it hits deep, even if it wasn't that big of a deal.  And so I have been working very hard at sheltering the world from my family.  Or maybe vice versa.  I have not shared much of the hardship or the ugly.  I always answer with "I'm doing good" or "I'm doing alright/ok"  And that is just not true.

I am not doing ok.  I am miserable, stressed, exhausted - both mentally and physically. I'm scared, unsure of anything anymore and stuck in a constant ongoing hyperactive analytic state with every situation I can possibly think of.  I feel alone and lonely, even though I am almost never ever alone - even when I need to use the toilet. I only get to shower if I give up something else that needs to be done.  Like sleep or dishes.  I feel overwhelmed and frustrated. I feel misunderstood.  And most of all, I am beginning to feel angry.

Jeremiah had his in-home nurse evaluation visit last Monday. It lasted three hours and there were more questions than even I could handle.  She was kind, helpful, and very polite and understanding.  It immediately felt like a huge weight off my chest.  She said that Jeremiah would be eligible for some PCA help here in the home and that would help take some of the constant caretaking off of me.  She said she would recommend that we begin to check into assisted living facilities to decide what we want for his long-term care based on the progression of the disease.  She called back today to tell me that he does qualify for long-term care under our insurance policy and they would help pay for most of that expense, and he also qualified for PCA care at a max of 1 hour and 15 minutes per day, because the state does not recognize mental issues when assessing PCA qualifications.  She stressed starting the assistive living process.

Friday we went to Mayo for another big day of tests.  He had his MRI, was seen at wheelchair clinic to start the process of getting him an electric wheelchair.  We also saw his neuro team again.  Jeremiah misunderstood their first line of, "The MRI looks good!" because good to them meant something totally different than it did to him and we spent the next hour explaining that a good MRI to them does not mean he is going to be all better, that he will make a full recovery or any of the other shreds of hope he has been clenching tightly the last 7 months. The doctor looked at him point blank and said, "you will not make a full recovery.  You have to much damage in your brain." He explained that while Jeremiah might have the mentality of a five-year-old, and they can use behavior modification and medication to get him the mentality and thought process of a seven-year-old, then that is a success to them because they improved him.  But I am still married to a mental seven-year-old.

And there lies the ugly part of all of this.  That we have been together for something like 16 years, and we had worked so hard to get a strong marriage and family we were both proud of and the rug is ripped out from under us again.  AND we have to face the fact every single day that we won't get it back. There's no amount of therapy or understanding or facing reality that will bring him back to the place he was mentally just a few months or years ago.  And watching him struggle with basic human skills daily is taking a large toll on me.  I no longer feel like the wife. My husband can't remember details about when we met and started dating.  He confuses things about our wedding day.  He gets frustrated when he can't recall the children's birthdays with ease.  He gets angry when he stumbles on his words or says things that are awkward and uncomfortable.  He can't comprehend most of what I am saying just in general conversation and we are both painfully aware of it on a regular basis.  Mentally and emotionally we both just lump things together and pretend they are fine.

In front of others, he expends literally any energy he might have to put up a front and make sure they don't see how bad he is.  Most of the family thinks he "looks pretty good" or "seems like he's doing better" and in reality, I know that he has succeeded in fooling them.  He has recovered his mess ups and accepts the excuses that people make when he is odd.  He has always been witty and can laugh at himself and those two things aid him well in this journey of not letting people see the real situation.  He won't tell people when he is hurting, or exhausted or when he wants to be done.  No, he keeps pushing himself with a smile and a story for anyone who will listen, and then when we get home, literal hell breaks out.

He is short tempered, he snaps at the kids,  at least half of us are crying every day.  The other half are angry and want to be left alone.  It's tense and stressful here. Because he doesn't understand that when he thinks he is talking nicely, he is actually yelling in a pissed off tone.  And when he thinks he is being funny, he's actually hurting your feelings.  He has glimpses of his old self, and I used to treasure those and look forward to the next time I would see "my husband".  Now they feel like a fewer and far between reminder of what we are all losing.  The hardest part is those who love him and are still in denial or not fully aware/understanding of what his reality really is.  And I accept some responsibility for that.  But more importantly, I wish people made it a point to know.  If they love him, they have a right to know what is really going on.  And unfortunately, I do not have enough hours in the day to personally answer everyone's questions and fill everyone in on all the details.  And sometimes, I simply do not want to. Because it hurts.

I worry. About his future. Mine. Our children's.  My sole mission has become to protect their memory of him as a father and a husband to me.  Because he is simply too good of a man to let the MS rob his children of who he really was to them.  And what he really was before the MS ravaged his brain to what he is now and what he will become in the future. I know what you are likely feeling right now having read all of these words.  But I ask you push that sadness out and fill yourself with love and happiness.  Because even in the storm, we all still have blessings.  We all still have love.  And we especially are shown each day how blessed we are by a community of support from those who genuinely care.  If you've asked how you can help, and I have been standoffish or offputting - don't stress, I am slowly becoming open to the help. I simply want to find the right avenue and time for your help.  Pray to whoever it is you pray to.  For there are so many around you that need it.  ❤

Reality

So - a few things first - If you read something, anything from me, and you think it would help someone, please share the post.  Everything we ever go through is only worth it if something good, helpful or positive can come from it.  Next... I had to put this all on the back burner for my own self.  I am the analyzer.  The one who needs to consider multiple scenarios and thoughts before I decide what to do.  I'm not impulsive and I consider my words to carry the most weight, because well, I can't carry much with this fake leg and all.  😆

Speaking of this fake leg...I make it look easy.  I know.  I'm not boasting or bragging.  I'm not "proud" of that - its just the reality of it.  When I was facing becoming an amputee there were many things to consider.  Basically, you can choose function or looks. I knew right away I was always choosing function because I don't much care about looks.  So I worked very hard to become the highest functioning above knee amputee I could be.  I do things like walk more than I should. Lift things I shouldn't.  Climb things I shouldn't.  Push mow the lawn.  I say shouldn't not because someone said I can't (if you know me, that will make sense) I say shouldn't because every single thing I do comes at a price in regards to my leg.  Every single day there is a physical currency for wearing my prosthetic and pushing my body physically as much as I do.  And every single activity or event, I know I have to pay a price for participating in that event. So things like mowing the lawn in one day, indulging in all of my sister's wedding festivities, or climbing the Elba tower, I know I'm going to pay for those dearly.  And I am willing to pay.

That being said, the smaller fees of daily life are usually not so much.  But now that I do all of the tasks of two adults in the household, the smaller daily fees are collectively becoming much more expensive.  I am now dealing with physical fatigue of my leg,  skin break down, irritation, sores, and even open skin.  Any amputee or medical persons know this is particularly risky for me because those things quickly lead to other issues. I tell you all of this NOT for your sympathy.  I appreciate the sentiment but I can do nothing with that.  I tell you simply as a frame of reference for an understanding.  I would LOVE to be able to physically handle being an above knee amputee, the daily life chores, 4 kids AND my physically disabled husband. But alas, I can not.  Not without ruining my own self.  So when I say we have had to give up some of our family traditions, it's not because I was not willing to find a way to make it work. It's because I just can't.

A few years ago I would never have uttered the phrase "I can't." I hated it.  I felt like a wimp. Like I was making excuses. Like I wasn't trying hard enough.  Now, that I'm older and wiser, I see that admitting when I know I can't do something is actually a sign of strength.  Saying no is not easy for me. I'm a people pleaser.  And I enjoy giving everything of myself to benefit another. But the real strength is in knowing your limitations.  In respecting your own self enough to know that you have to save something for you.  That you can not empty your bucket into everyone else's because then you have no more to give. 

I am not wonderful at navigating the new reality that we have been forced into.  I don't know when to make what decisions regarding Jeremiah's health.  I rely on the Lord to guide me and to speak to me in ways that He knows I will hear.  And I freely admit that I am not deserving.  That I do and say things that I know would make Grandma Taubel cringe (that's my measuring stick - would I want grandma to know that) but I am only human and I have officially transitioned to survival mode.  Gone a little bit numb to the world in front of me so as to simply survive it. 

I have not been posting here regularly because not admitting what was really going on in our life was a false sense of hope and comfort.  But that too came at a price.  And I have paid it. But I realize now that it is not benefitting anyone.

SO here is what is REALLY going on in our day today.  If you have spent any time with Jeremiah you likely have thought he looks good and you aren't sure why I have said things I have in regards to him.  I too make excuses when something seems wrong or off.  Like "Everyone forgets people's names" or "Everyone struggles with ________ sometimes" and while that is true, not everyone struggles in the way that he does.  The truth of our life is that things are progressing on the daily.  That each day he and I both notice him slipping.  Especially his mind.  

He can no longer make decisions because as his Drs have explained, the part of his brain that uses rationale and decision making is gone. His impulses are or will soon be affected - we see this come out in mood swings.  It has become very much a walking on eggshells life for me.  I rarely relax or "let my guard down" because it's not if he snaps at someone today, it's when and how bad.  AJ gets it the worst and I see their relationship breaking down.  Jeremiah admits to me that his eyes are worse, despite him telling everyone they are getting better.  His legs feel stronger (likely a false sense of reality thanks to the steroids) but that they do not "listen to what he wants".  He now struggles with basic communication.  Simple words escape him regularly.  Yesterday he could not find the word "fabric" If he is speaking to someone, he will just grasp any random word to fill in where he can not remember, and that makes for a gibberish like sentence that I can not understand what he really meant.

He has become extremely socially awkward.  Not being able to properly communiate is where our personal interactions begin.  He no longer knows what is apporpriate and what is not.  He has been diagnosed with Pseudo Bulbar Affect or PBA - you have seen the Danny Glover commercials for it.  Only the commercial does not tell you that it can take on many faces and is not simply laughing at inappropriate times. 

He can no longer remember much beyond 12-hour stretches.  So things that have happened this morning, he likely cannot recall at bedtime.  He also tells me that sometimes the hustle and bustle of our busy family life is overwhelming for him and he can't handle it.  And so the question I can not answer still hangs over both of us, now what? 

He has completed this last round of steroids. We have been referred to the brain injury clinic due to the damage to his brain from the lesions.  Based on what he reports to me I do not expect to see any improvement on the MRI at the end of the month.  I simply hope for no significant deterioration.  I worry that the medications we have pushed on him in the last 3 months have only masked the pain, but done nothing to correct the cause - but then again, that is the ugly of MS. I have no qualms about any of the staff we have worked with. I understand everything they are saying and the path we are on, even though we know Jeremiah can't.  We have been working with a specialized social worker to help me navigate through the process of getting a PCA to come into the home.  They are also forcing me to seek respite care for myself.  I say force because you know I hate having to admit I need to do something selfishly for myself alone even though I know that it is crucial to the success of my children and family. 

I want to say a special thank you to those of you who have sent cards.  And Money.  And gift cards. I HATE saying I need that help.  But you have been God's answer to a prayer.  The specific amount you have sent, or card you have sent, was exactly what I had prayed for a few days prior.  We are not on food stamps or any of the like, and yes, I know that we need to be. But that darn pride keeps me from doing this I know I should.  Anyway, thank you for being God's answer to my prayers.  I plan to hand write thank you's to all of you. But I guess I'll have to do that in my spare time.  ha!! Thank you for being our friends.  Knowing that we are surrounded by a community of love and support brings more comfort to us than you could know. 

I am not done. And neither are you.

Listen - This shit, it's hard. It is not easy.  And anyone who tells you it is, is lying.  Mental health, perseverance, even success - those are DAILY CHOICES. And I'm telling you, you can not give up on choosing joy.  Do not give up on choosing to be better or have better or do better.  It will be hard.  No doubt about it.  And you will want to give up.  But keep. on. going. 

Everyone says, "You're so strong." or "How do you do it?" Like this:
You push on.  If I feel like I am breaking - and let's be REAL - lately, that is every single freaking day lately - I tell myself, one more (day, hour, task, conversation, call, appointment, whatever) and when I get through that, if I still want to break, then break.  But guess what? After the thing I feel I can not do is done, I don't feel like I'm done.  I feel like, ok, now one more.

 I need to say this because I was that girl.  I was that girl who would accept mental and verbal abuse as if they were the norm and they were allowed.  This mantra of one more - does not and will never apply to a negative situation.  If you are being harmed in any way, or the situation could cause negative lasting effects on your life, then this does not apply. The only thing worse than staying where you KNOW you shouldn't, is staying for one more day.

If you don't know yet, or you have forgotten, I want to remind you that anything worth having, is worth fighting for.  It's worth working for. And if you think you failed, you think you screwed up, guess what - each morning you wake up is your second chance to do better.  To right your wrong. To learn from your mistakes.  Every experience in our life is either a blessing or a lesson.  Use your defeats and your trials to be the best version of you there can be.  If you are willing to do the hard stuff, willing to face the truths and work through the pain with time, then you really can accomplish anything you want to.  Don't give up, friends.  You are worth it. 

One Day

Almost a month since I last posted.  I have excuses, but they're still useless.  My little sister got married Saturday to the guy I would have picked for her.  She was a stunning bride of course and I was so honored to be asked to be a part of their day.  I had so much fun (too much fun if you would've asked me the next day) that I was actually a little bummed it was all over with. 

As a caregiver, we become so wrapped up in that role that it quickly becomes our identity.  For me, it is even greater of a struggle because I find myself neglecting my own needs as an amputee patient.  And my mental health needs as well because let's face it, that is the easiest thing to dismiss for us, right? 

Mental health will forever be a subject I am completely engrossed in.  It is such a major part of every single facet and part of us and everything we are and we do.  And it is such an important part of our physiology.  Why do we go to the doctor for help when we are injured or have strep, but refuse to get help when our psyche is not up to par? Why do we never question someone getting treated for cancer or epilepsy, but we silently put walls up when we hear they are seeking treatment for mental health reasons?

I understand that it's actually a two-fold answer.  First and obviously there is the stigma.  But for me, it isn't about the stigma.  It's much like a co-dependent substance relationship.  I know that for myself, to keep me mentally fit and at my best, I have to be very guarded with who I allow into my smallest social circle.  You've likely heard it said that if you want to become rich, surround yourself with rich people.  The same is true for mental health.  You can't improve your mental health if you are only ever around those who are not mentally healthy themselves.  It's just like a drug addict. It's SO EASY to stay there. 

I was bummed the wedding was over because I realized now I have nothing to hide behind in my own mind anymore.  I have nothing to preoccupy or distract me from something that is totally unrelated to my own family and our own struggles. I have nothing that is just mine, that I don't have to feel guilty about leaving them to deal with without me. I am feeling lost in the caregiver role.  I feel like it is the driving force behind everything I am and do now. I feel like a part of who I am as an individual, slips away with each wheelchair load, or each question. And it also feels daunting.  When I was the patient and he was the caregiver, we knew this was not going to be our life forever. We knew there was a change.  I would die and he would be able to move on.  Or I would live and get better and we would be able to move on.  But with him, we don't know what the future could be.  And that scares me.

He has now received four doses of weekly steroids.  He thinks his legs are getting stronger and will try to stand.  I remind him gently (sometimes, others not so gently) that is how he has fallen almost every single time - trusting his body when he knew it wasn't trustworthy.  He still has not regained any sensation in his right side and sometimes it frightens me how little he can control his right side.  His left side often and randomly feels "weird, but not the way the right side does." While the apparent strength in his legs does give us hope, even he freely admits he feels a bigger struggle cognitively and mentally.  I can see it wearing on him physically now too.  His eyes don't track together, he looks confused at times and I wonder if he knows what we are actually doing and if he is frightened about his confusion but is also too proud to ask me any questions.  His mood swings have been a lot to handle lately and they definitely take their toll on us all, him included.  I find the well of strength I used to dig down to refill from is quickly depleting.

I still struggle with balance.  In every way: walking on my own, 😆 being caregiver vs wife.  Being caregiver vs mom.  Being caregiver vs patient.  Being caregiver and working or "taking care of myself".  I have always prided myself on the load I can carry and my pain tolerance, both physically and emotionally.  But tonight, tonight I feel tired. Tonight I wear my frustration on my sleeve like an ugly reminder of what our daily life has become.  I chastise myself for being angry and not being stronger.  For not keeping it together better and the house in order more.  But a very new and very dear resource and friend who has literally been on this same journey told me I need to give myself permission.  Permission to mourn the loss of my marriage and my husband as I knew them, even though he is still physically here.  And that concept alone will take time to absorb.  In the meantime, I do what everyone else does - one day at a time.

Jeremiah's Update

I wish I could write something poetic, heartfelt, or even something I can smile at once I've completed it. But this post is just not going to be one of them.  And that's why its taken so long to produce.  I am finding further frustration in the situation and circumstances that slap me in the face every day.  The harsh reality of "our new normal" that never feels to match up with even our obscure oddity way of life.  Jeremiah has not improved.  He continues to decline.  And perhaps my silence here on the blog lately has been my own private acceptance of things.

Jeremiah has decided to stop being stubborn to the here and now.  He has accepted the help from the therapists, and is now embracing all the devices they have recommended for him.  Don is putting a ramp back up. We will have some bars installed in the bathroom. We have moved our bedroom around and purged much of our belongs so as to give him ample space in there for the wheelchair.  We have made signs to post around the house to help him remember what he can't do alone.  We are starting the process to have home health aide come in and will also have a PCA to help as well.

Dr. Kentarci feels he would benefit greatly from in patient therapy and that is the next "project" getting him admitted to that. The reason is because he can have more focused attention on his therapy sessions.  This sounds like it would not be any different than outpatient like he is doing now, but anyone who has walked this same path, can explain that it is much more beneficial to someone in his situation.

Dr. Kentarci also wants to start a once weekly, 6 week steroid course to try to keep the inflammation around the lesions at bay somewhat. In his words he is trying to keep Jeremiah from ending up paralyzed and by us some time to get to the next OCREVUS® dose early next Spring.  We will have a repeat MRI at the end of those 6 weeks to compare to his August MRI and see where we are at then to determine what to do after that. He hopes that someday Jeremiah will have some use of his legs, but that isn't a concern right now.  We have to deal with what's happening now before we can deal with anything else.

How is he holding up? Who knows.  Honestly, his short term memory is so jacked he rarely can recall one day to the next. He confuses time a lot yet and he also confuses people and conversations.  He gets frustrated because he is more aware of his speech issues; trouble finding the correct word, trouble holding conversation, speech itself - it's all a big struggle for him and he mostly just avoids it all together.  This is extremely difficult for those of us who are around him all the time.  It's a benefit of sorts to him as he simply may not remember the last 24 hours.  So if it was a bad day, it falls by the wayside for the most part for him.

How am I doing? I'm exhausted. Mentally, physically and emotionally. I feel like I'm on the brink of a nervous breakdown and I am barely holding it together. I feel like I'm failing in all areas of my life; my business, my family, my kids, my finances... It's more stress than I could have been prepared for or even understood before hand.  I have always had the mantra "one day at a time" and I am only holding it together as much as I am because I am totally ok with taking it even one hour at a time. I am trying to get better about reaching out to those around me, especially those who offer the help.  But it's not easy for me.

The kids... well, they are amazing. And definitely each have their moments of weakness and breakdown.  Of total emotional hell where everything feels like its fallen apart beyond repair. But more often than that, they give me purpose and drive to continue to keep focusing on the future and the blessings we still have.

The news we knew

The brush finally stops, having finished its series.  Apparently, my dental hygiene is now complete.  I put it back on the charger.  And just stand there hanging my head. And breathing. Irony is never lost on me. My last post about keeping it together (Read it here if you haven't yet) was perfect timing for myself because I have had to REALLY work hard these last 4 ish days at keeping it together.  And it has definitely been that.

We were finally seen at the MS Clinic last week. His normal neurologist is gone and the soonest we could see him was September 20th.  Nope.  I asked to see the other neurologist we saw while his was on medical leave.  His soonest was September 14th.  Still nope.  So we were seen 2 days later by one we have never met before and I finally found one I think I am older than, BUT he was very nice and I felt like he was very experienced.  So maybe he just ages well.

I didn't go in there with hard questions. But sitting there watching Jeremiah miserably fail every single "test" and seeing the frustration in him, and answering the questions I was given just forced those questions out of my mouth. The things I have refrained from asking any doctor because I know... but I didn't care. What should I expect next? What is going to happen here? What is our goal? What are we working towards? What next?

The doctor was very polite and sensitive. He was also very honest that he is the newest cook in the kitchen (talk about knowing his audience!)  and things don't go as smoothly when you have too many of those so he would let our normal neurologist take the lead, but this was his opinion based on Jeremiah's case. Here's where things are at:

He likely won't recover this time. For sure not like he has in the past, but even a small recovery would be considered "a win" to them.  There's just so much damage from this attack on his brain and spinal cord. There's a lot of scar tissue and active disease still showing up, despite all the treatments he's had. They aren't giving up, and there are still some options. But that is his medical opinion given what's been done in the last 3 1/2 months and what is still happening.

As for the intense physical pain Jeremiah is having, they did put him back on Gabapentin.  If that does not provide enough relief they would like him to get some injections directly into the area at the base of the skull. They caution it does not work for everyone, but for those it does, it seems to work well.  He's been on it for a week now, and it works sometimes but not all the time. We will titrate up his dosage before we try the injections.  Our main goal I think is to find a routine that allows him to sleep through the night. Because the last few it's been like having a newborn.  He's up 3 or 4 times a night.  Thrashing all over the bed, slamming his wheelchair into everything, groaning... just a hot mess. We have joked he is the true bull in the china hutch.

I struggle in my caretaker role that he is still falling a lot. It's not a situation where we do not have the right equipment or are not taking apporpriate precautions. And what I call a stubborn ass, the clinic assures me is not entirely that. They tell me that his MS has affected the part of his brain that makes decisions and common sense, so he simply does not understand safe transfer and good choices when it comes to phsyical abilities.  And then of course there are the times that he does everything right and his body simply fails him.  His legs wont move when he wants them to or where he wants them to.  It's just the perfect storm for disaster. Thankfully, we've had no major injuries and I do not need a gym membership.  Jeremiah's mom said she would definitely not want to arm wrestle me. :)

As far as treating the MS... Man... this is the ugly part of this disease I guess. They're nearing the end of the list. Plasma exchange is off the table at this point (thank GOD!) because he received the Ocrevus and that would remove that from his system as well. Since it's $15,000 ish per dose, Mayo was sure the insurance company would have issues with that.  As would we. We want to make steps forward, not back.  So what can they do? Tentatively we are thinking weekly maintenance doses of IV steroids and try to give the Ocrevus a chance to work.  (It can still be months before we would see any improvements, because MS meds do not "fix" attacks and damage already happening, it can only work to reduce future attacks)

If he continues to decline as he has so far, they want us to consider a chemotherapy. It's not one I had so I was not familiar with it or it's side effects. But the idea here is exactly like it is for cancer patients - wipe the entire body out and hope it comes back better able to fight.  Jeremiah is very vocal about being terrified of this and at this point is not even considering it.

Speaking of being vocal, he continues his speech and occupational therapy. He still has some pretty severe cognitive function.  What does that look like to others? Well, it honestly just depends on the day, the time of day, what he's been doing that day... it's VERY random.  Sometimes, in short conversation, you wouldn't likely notice any differences. But there are other times he spells his name wrong at check-in and doesn't notice it or still confuses his right and left sides. 

 We both keep waiting to figure out a new normal that works for us, but so far, we have not found what that is.  We try to remain optimistic. I look forward to the glimpses of the man I married because they are still there.  And in the moments that I see a shell of a man who is suffering, I just pray.  If I could take this from him, I would. But it just doesn't work like that.

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.  

Mom, you're doing just fine

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love." - Washington Irving

If you listen to me long enough, you'll know quotes are big for me. And this one plays in my mind like a broken record. Especially today. Growing up things were not always as easy or nice as they could and should have been. I felt like tears and crying were showing whatever the evil was, that it was winning. So around age 10, I just started to do everything I could mentally to never cry. I thought crying was perceived as a weakness. And I HATE feeling weak.

Now that I'm an adult and I know better, I still "can't" cry. I am not sure if this will come out right, but my tears are internal. My pain is inside and doesn't come out in a physical manner that others can see, like tears. It comes out in other ways, frustration, mental fatigue, severe back pain (like muscle knots and tension) I wish it came out in tears because we all need to release our emotions. All of them. Think about it. We smile when we are content, laugh when we are happy, yell when we are angry, scream when we are in pain (usually). Even an infant knows to express their emotions.

Today was a #MomFail! I had 3 alarms set because I had 3 things to do this AM. But Emma told me that she didn't need a ride because Grandma was giving her one. So my brain apparently heard, 'you now have absolutely nothing to do today but sleep in and miss every single thing you needed to get people too.' Olivia didn't get to Plainview with her sister, despite asking me if she could. Jeremiah was 40 minutes late for infusion and I forgot my wallet at home, of course, so didn't get milk for cereal at noon because that's just how we roll around here. I left the house already behind for a very important appointment with 3 kids crying, lots of swearing and Jeremiah thinking "he's fine, he can do it himself" I told him the stubborn thing is getting old and just not the time. To which he replies, "it's not my fault it comes with the last name". At least his wit is still intact 😉

My "tears" today were for feeling like I let my family down, again. For the 89.00 gas tank fill. (Gas is just so expensive! Why can't they make a car run on my family's gas, because we would be all set if they could....) For the lady at Bennett's (the grocery store in town) - I don't know who it was, Olivia wasn't sure, who paid for the kids donuts. And whoever put the $450.00 in my People's Checking. I'm 98% sure I know who you are, but the bank didn't identify you. You don't know how you helped. You kept my insurance paid and that's crucial right now for obvious reasons, and my cell phone bill paid - which again, is our lifeline right now. These are blessings, my friends. Despite all of our trials these days, we are still, so. very. blessed.

My message today is for all of you mom's out there. I feel you. You are wondering if you are doing it right. If you are a "good mom" If you yell too much. If you buy too much. If they love you some days... I'm here to tell you if you think any of those things, then chances are HIGH you are "doing it right". It's like I tell my Pampered Chef Team, if you are worried you are being too pushy, then you aren't. The salesman who is actually too pushy, never questions if they are. It's the same for being a mom. All any of us can ever do, is our very best. As long as you are honestly giving it the best effort you can, you're good. Each day, try to be better than the day before. Because forward progress of even the smallest amount, is still better than no progress at all. So if you are aware of being a good mom, then you are. 💓 And, it's ok to cry!

Ring

Ring.  A circle, a symbol, a beautiful piece of jewelry, a shape, part of a sport... a ring is so many things.  And like so many things in this world it means different things to everyone. To me 'ring' reminds me of our wedding bands.  When I was sick, I asked to never have my ring taken off (for surgeries and such) they would tape over it and tape it on to my hand because I think they saw how important it was for me. How much my soul needed that ring to stay there. It sounds funny, and I can't explain it, but it was a real thing for me.

Now that I'm no longer the patient, and I'm the caregiver, ring means even more.  Funny now story.  (but NOT at the time) Like 2 years ago, Jeremiah ended up losing a lot of weight, due to the MS I am sure.  His wedding ring kept falling off.  He lost it once and I was SO angry.  Because those were the same rings we had worn, the same rings we said our vows with. AND of course I had told him that it was going to get lost and until we could resize it, he should just keep it in my jewelry box.  He knew better, I guess. So the ring was lost and he was afraid to tell me.  I noticed eventually and he had to confess.  Then one random, fluke day, I was outside our house and just happened to catch it from the corner of my eye.  (after having prayed and prayed and prayed that I find it) He just HAS to put it back on.  You see where this is going.  Yup, he lost it. Again.  Only this time, he *thinks* it's somewhere maybe in the yard.  Possibly in the gutters or on the roof.  Not really sure exactly.

So, I saved up my Pampered Chef commission last year.  A little from each check so I could pay cash (being debt free is on my bucket list! #DaveRamseyFan) for a new band for him.  We got one very similar, but different colored to his original.  And he's worn it every day since.  Every time anything happens to us, we always say, what did we learn from this.  (The kids HATE that...) and I learned an important lesson.  The ring he wore was important. But it wasn't the ring itself that had meaning to me.  It was the man wearing the ring.  Seeing his ring on his finger reminds me that we are a team and that we are always better together, regardless of the state we are in.  (so far we like MN - haha)

This week has been rough for us. Monday night, Jeremiah lost the ability to walk.  He was not walking well, but Monday night he was not able to walk at all. Remember when you were a kid and you put your forehead on the bat and then spun around and tried to run to first? That's what he looked like.  It was brutal.  Last night, my sister came over and helped me keep him steady on the stool while I cut his hair and shaved him.  I helped him to the shower, where he is finally using assisted devices.  He called out for me really quickly and when I got back in, he was saying, "I can't see, I can't see anything" He has lost all vision, and very suddenly. "It just went black" I rushed him to the ER around 6 last night.  We arrived home around 2 AM this morning. In addition to his vision, he was having much more general confusion, (confusing time and directions) he was having severe impairment in his abilities. (We lovingly refer to them as the 'drunk tests'  Touch your nose then my finger, stand with your feet together, trace your shin with the opposite heal, repeat this phrase, etc)   and he was having some other difficulties as well.  (what is left, right!?)

Today we were back over at Mayo meeting with the therapy team.  He is being referred for ocupational therapy, speech therapy and physical therapy.  They'll also be prescribing him a wheelchair and other gait aids and devices to help him be more independent. The steroids he was given in the ER seem to be helping some. His mood was better today.  His vision seems to slowly be returning and he was actually awake for more than an hour today. Seriously.

Going forward, he will have more steroids every day until Sunday. He will have his new MS drug infusion as well.  He will also have a repeat MRI to track and compare from July's.  (I actually feared he had had a stroke last night...)  We will also be doing many therapy appointments as well.

SO many people are asking what you can do.  So here is my list, and it isn't easy for me to admit I need help...

1. First, pray and pray and pray some more. Not just for us, but for yourselves and those you don't even know.  
2. If you want to help us in a more material way, gas cards as we are making daily (sometimes more) trips to the clinic, and those awesome little parking ramp stamp cards.  (We are now going to have to be going between the campus') and food cards- like Jimmie johns or something near Mayo because he gets hungry during treatment and appointments.  And making sure he eats and drink has been a chore lately. 
3. I can not ask for money outright.  And saying, yes, it's ok to send a gift card still makes me feel... annoyed (with myself ...like I'm not doing my "job" as an adult I guess) That is why I say if you want to help, buy your pampered chef from me.  Host a virtual show with me. Refer me to your friends for pampered chef. Write a review for me on facebook for my Pampered Chef. I don't want to be given something I am capable of working for.  And I can work my business from his bedside while I find comfort and solace in staring at his wedding ring. Much love Friends! <3 
   

Getting all Dr Phil on ya

I'm a HUGE Dr. Phil fan.  And if you listen to his messages, you might be too.  Some of my favorites:
- "we don't burden children with adult issues.  They can't change it, they can't fix it and it makes them feel helpless" Plus, it scares the hell out of them.
- "No matter how flat you make a pancake, it still has two sides." just like everything in life.  And the truth is usually somewhere in the middle.
- "The best predictor of future behavior is, past behavior." want a new future predictor? Change your behaviors and over time, you have a new past, that predicts the future behavior you want.
And my favorite -- "In life, you generate the results you think you deserve"

Today I have an overwhelming urge to talk about self-talk.  What we tell ourselves.  Because you might think it doesn't matter.  You might think no one else knows the awful things you tell yourself.  You might think you hide it amazingly well.  And you may.  But you don't really.  Someone in your life, maybe your spouse or child, maybe the gas store attendant - but someone knows.  If you don't love yourself, how can you expect anyone else to?

Many people who suffer from depression or anxiety are often told, 'just get over it' or 'just be happy'.  But what mentally healthy people do not understand, it isn't a choice.  They don't choose depression.  Trust me, they damn sure do not choose anxiety.  Anxiety attacks, real ones, big ones, yeah they feel like you're dying (I'd imagine) Mine are similar to what I think would happen if a stroke and a heart attack had a crack baby.  That's not funny, but it is legit physically paralyzing. My chest is so tight I can't take a breath, and because it's tight and I'm in full on panic mode, I can't speak.  But even if I could, it wouldn't much matter - what should I say? I'm just having a panic attack.  That by the way, I didn't "bring on myself" True panic attacks usually just happen.  It's not because your thoughts forced it to happen.  (although your thoughts and stress levels surely do not help anything here)

That all being said, what I want EVERYONE to understand is that the negative self-talk is so crucial to your overall life, yes, overall - not just mental health, but your physical health, your entire life as a whole, including what you do.  Hear me out here.  If I tell myself, "OMG, I'm so poor, I can't afford anything!" I will be poor and not able to afford anything.  I will subconsciously make choices that keep me in that state.  I know it sounds crazy. But if I tell myself, "I'm a Pampered Chef ROCKSTAR and I will reach all of my goals." and "I have plenty of money for all the things I need in life" I will start to see things differently. Which will change the choices I make and thus create a different result that works toward the one I want.

We have always told our kids, "instead of worrying about what you DON'T have, try being thankful for what you do have." My kids can't "compare" to many of the kids in their school.  But you bet your ass they look pretty freaking amazing next to the kid in the shelter.  Or the kid who has to walk to a lake for water. Life is really about perspective.  And how you see things will affect every single area of your life.  It's been proven. There have been MANY medical studies that have proven that what I'm saying is true.  That your mental health, and your attitude or perspective about things will domino affect nearly every single other thing in your path.

To get you started, and I hated this activity at first too - write down 10 self-positive affirmations.  When I was down and out, I actually created a visual for myself because that's how I learn. (and one of them is listed twice on purpose ;) ) I posted it in my office, in my planner, it became my wallpaper on my ipad and my phone.  I sent it to people that I trusted and wanted to hold me accountable to myself to be more positive! I'll show you mine.  But if you need ideas for what your 10 things are, google ideas.  Look on Pinterest. There are so many wonderful ideas to get you started! Then read that list.  Over and over. Read it so many times you can recite it word for word at any time.  And then once you can do that, keep repeating them to yourself. While you're driving. While you're in the shower. Or trying to fall asleep.  Repeat them while you're smiling and nodding at pre-teen drama - (just kidding, I always listen intently to my children.) You NEED to make those 10 positive things automatic thoughts. Trust me.

I encourage everyone, mental health aside, to watch these Dr. Phil clips where he explains the science behind this and why it isn't a 'choice'. (Turn up your speakers, he was sick that day!) Click Here!

After you watch that one, watch this one on how he explains how to eliminate negative self-talk

Adulting is not what I was expecting!

You know all of our obvious struggles lately or can at least guess what they might be. But man alive you guys, I still find myself screaming, "REALLY?!" to absolutely no one so many times... There are so many things that I didn't know when I decided to really try this adult stuff.  I have many examples. And I won't list names, because, I'm better than that.  And also, I can't keep their names straight anyway.

One of the things I am the most confused by is poop. In the toilet.  What happens in there? They go in, they do their business, finish, and figure, "oh, mom will be so proud of this, I think I'll leave it for her".  Or is it, "well that was so much work I simply can't extend my arm to push that little silver lever".  Or is getting out every single toy we own just so pressing they simply do not have time to flush it down?! I suppose it is my fault.  I taught them when to use the bathroom, where to go to the bathroom, how to use the bathroom. But I suppose I forgot to STRESS the importance of flushing like I stress the importance of toilet paper and then soap and water.  Parenting fails, obviously.

The same ranking on the list would be putting empty things back where they came from.  Now, our kitchen isn't THAT big.  But, in all fairness, their legs are shorter than mine.  I can see how it would require like two or three steps to go from the fridge to the garbage.  I brought this to their attention.  And I am not kidding, they have all perfected the all-important life skill of leaving barely ANY product in the container so they can say, well, it's not gone yet.

The last one, I just can't understand.  I have a shoe basket in the entryway.  Directly next to the door when they come inside.  All they have to do is place the shoes in the basket.  But I think someone must be paying them per shoe that is left OUTSIDE the shoe basket.  They have to be. Because I kid you not, the shoes never go in the basket.  I'll even go out there, and put all the shoes laying on the floor in the basket, and then I come back out and sure enough, there are all the shoes back on the floor and the basket laying next to them.

I've asked said accused of these transgressions.  And you know what they say?! "Mom, ghosts." Yup.  At least I don't question if I have an extra child named, 'wasn't me'.  Oyi...   Ghosts, can you please flush the turds, throw away empties, and leave the shoes in the basket? Please? Thanks!