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.