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.