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.