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.