22. I am a reader.

If someone picked up my Kindle, they would wonder about my mental state even before all of this started.  I read a LOT.  But my choices of books range from trashy romance, to historical, to self help, biblical, teacher books, to children’s books.  I’m all over the place with the different choices of books I like to read.  Recently, in one of my romance novels, the main character was told that “your life is too loud”.  This describes my life from the tips of my toes to the top of my head.  We haven’t updated the blog simply because our life has been “too loud”  lately.

Again, the whole goal of having a blog is to create awareness of chronic pain, raise funds for research, and teach our own children and our former students how to navigate through the “yuck” or the loud phases of life.  I don’t feel like lately I’ve been navigating all too well, simply because I’m really sick of this. It doesn’t seem to end and it's a time suck and I’m the main traffic control officer. 

A few months ago, when Roger was coming off of the heavy duty medication, we requested to get a baseline driving test.   Roger went and took the test, and at that time, his reaction foot speed was not the greatest so he had restrictions placed on his license.  While we don’t disagree with restrictions, we live in a rural area.  When we talked to our resident, she shared that she did not know where we live, as she hadn’t traveled in that direction. So, with her suggestions made, he couldn’t drive to appointments, the gym, the store, etc.  So, after Roger “graduated” from his PT, OT and speech goals, he recently retested and passed that driving exam with flying colors.  But, for someone who is supposed to be under reduced stress……wouldn’t it have been easier to make the restrictions somewhat suit where he lives?  This would have been just a minor switch.  During the time before his test, we were researching selling our home, me taking a leave of absence, and a whole slew of other fun options. No stress here, just peace and quiet.

We also met virtually with a geneticist at the Highly Regarded Medical Facility (HRMF) who reviewed his file and notes and feels that he doesn’t have HSP or SPG7 because he doesn’t have spasticity in his legs.  While he does have other symptoms present for SPG7, because he doesn’t have spasticity, she felt that he simply is a carrier for HSP/SPG7 and has something else. So, now what? Do we go to the HSP specialist?  We called the neurologist at the Highly Regarded Medical Facility (HRMF) to schedule our appointment in the spring (as we were directed to do) and check on the clinical trial we signed up for. After spending the rest of the day on the phone, they have no record of him needing to see us in the spring and the clinical trial (insert your own comment about political climate and decisions being made impacting medical trials) is on hold.  I’m starting to think we never really will find an answer and will simply just treat his symptoms.

Some of you have asked specifically what symptoms Roger has and why we started seeking medical answers over 3 years ago. Roger today is different than last summer, which is a good thing.  We feel like we are the closest to “normal” that we have been.  Today we find that he is struggling with leg pain, is weebly wobbly at times, fatigued, and at night and in the morning, struggling with cognition issues or “foggy”. His long term memory is fantastical and his short term memory is great, unless he is asked to multitask or is tired. He struggles with quality sleep. At times, his sleep test will show REM sleep disorder and other times it has shown mild sleep apnea.  Most people, including family members, today don't see a difference.  If you were at my house last summer,  you would have seen a MUCH bigger difference (and many of you were justifiably worried).  Last summer, as he was coming off a whole slew of medication, he was not remembering names, including names of people he should know.  We both struggle with frustration, with each other and ourselves.

My mom heart and house is full as our oldest moved home to do some clinicals before residency.  Our youngest moved home today to have surgery and finish out the remainder of her year of college online. My mom heart hurts for her as this year isn’t what she planned and hasn’t been the easiest for her physically, socially, and emotionally.  Her dad is sick, she’s been recently diagnosed with Celiacs, and now will have surgery after missing half her sport’s season. (Jake would argue by the way that cheer is not a sport.) I’m thankful that her cheer team, her cooperating teacher, and others have lifted her up and I’m learning that sometimes when you aren’t expecting it, you are going to find those bright spots in your day to “keep you keeping on”.  (See photos below).

As Jake said to me after a rough day recently, “Life just keeps on life-ing”.