Babe, your nightgown is on inside out...

The title of today's blog says it all.  These are the things that happen daily.  

This is really going to date me, but to any of you who are reading this and are old enough to have seen the movie "Splash", do you remember Tom Hanks' secretary?  She'd been struck by lightning and acted peculiar ever since?  She shows up for work with her bra on the outside of her shirt.  I often think of that scene because I feel like that could totally be me on any given day...

One day it's leaving a burner on.  Another, it's literally starting a fire while trying to cook a simple pot of instant rice.  Another day an article of clothing is on inside out.  Or I put the opened bottle of salad dressing in the cabinet instead of the refrigerator or try to fill my water bottle with the lid still on it or I hear the timer go off, but then don't actually take the food out of the oven or....the list goes on and on and on and on...

Then there is the conversation piece...I can unload the dishwasher or I can tell you what I had for lunch, but don't expect me to do both at once because my brain cannot handle recalling information and knowing which cabinet the glasses go in all at the same time.  I either have to stop talking or stop moving in order to finish one thing or the other.  If I'm talking to my husband and he gets up to scratch his back or to plug in his phone, my train of thought is gone because that's all it takes for my concentration on what I'm saying to be broken.  

Word finding is a struggle.  Some days it's worse than others, but it happens daily.  When I'm writing, the words come more easily to me.  And if one doesn't, I can google or use the thesaurus tool and more often than not, figure it out.  However, when speaking, it's an entirely different ball game.  I will have a word, and then it's gone.  I will try to recall what it was, and it's like my brain literally hits a black wall, like there is just nothing there.  It's not even that "it's on the tip of my tongue" feeling.  It's literally like I try to pull it from my brain and everything is just blackness, like I actually have the vision of a black space where my word recall should be when I try to close my eyes and come up with the word.  What almost worse is when I use the wrong word, and I have no idea I even did because my brain doesn't even recognize it...I'm a language arts teacher, lover of the written language, passionate about reading and writing and everything that entails, yet I hit this "black wall" daily.  

If you were to stop by my house for a visit, we sat on the couch and chatted, and then you said good-bye and left, I might even be able to step out onto my front porch to see you off.  You would think, "Oh, she is doing well today."  But, what you wouldn't see is that if I stood up and tried to carry on that same conversation with you, my voice would become weaker, I'd be running out of air quickly, I'd be winded and struggling to get the words out, my sentences and conversation wouldn't be as complex, my heart rate would go up, the room may begin to spin, my legs would begin to ache and tremble with nerve, muscle, and joint pain, my conversation wouldn't be as fluid.  After 5 or so minutes, I'd have to sit down because that's where I hit my threshold.  

But, I just double-checked, and none of my clothes are on inside today, so there's that...

I Can't Drive 55...(or 45, or even safely at 25...)

Yesterday I spent the day at Madonna doing my rehab therapies.  We were up at 6:45 A.M., out the door by 7:45, and I was at my first appointment at 9:30.  It was along day, as is usually the case.  I was finally finished at 4:00 P.M., then a stop to pick up our online grocery order, an online fast food order, and on our way home.  It was after 6:00 by the time we got home, and then there were groceries to bring in and put away, household tasks to do, and I was completely exhausted as is always the case after a day of therapy.  I didn't let myself nap though, because then I'd not have been able to sleep at bedtime.  Instead I wrote.  But at the back of my mind, I was also thinking about the day and the therapies I'd attended.

I shared my concern that I had not driven since February 28th with my OT.  She told me they had a driving simulator, and asked if I'd like to try that just to see how it felt to be behind the wheel again.  I was eager to try it.  But, I wasn't so excited when reality smacked me in the face.  

It started out slowly, I was "driving" down a residential street.  My only task was to drive 25 mph, using the gas pedal, and then to stop, using the brake pedal, each time I saw a stop sign.  I didn't even have to steer.  OK, easy enough, right?  So you'd think.  Each time I stopped, my perception was so far off that I was the equivalent of probably 20 feet back from the stop signs.  I couldn't get the timing of braking and distance figured out.

Once that was over, I had a second "drive".  This on was to see how I did with hazards along my route.  I was both steering and in control of brakes and gas this time.  I started out needing to go 45 mph.  I immediately noticed that at that speed, the things in my peripheral vision were going by quickly, and I was almost instantly getting dizzy.  However, then I moved on to a residential area where the speed limit dropped down to 25.  That wasn't so bad.  However, there were parked cars along the route, and I was finding it difficult to go out around them.  I could't judge my distance, things began to get a little blurry and distorted, and I could tell I wasn't driving in a  straight line.  My reaction time wasn't great either.  But I didn't crash, and I made it through the residential area without anything happening.  The speed limit increased to 45 mph, and I was suddenly very dizzy.  Concentrating on the road in front of me while things were rushing along in my side mirrors and peripheral view caused everything to start spinning.  My OT immediately stopped the simulation, and had me just sit, do my breathing exercises, and get myself re-oriented with my surroundings.  

We went to the Vision Room, and she showed me a vision exercise I will now be doing as part of my home program. It will help me to retrain my brain to use my peripheral vision without getting dizzy (hopefully).  Between the dizziness and my delayed processing speed, driving is going to be a challenge...

But needless to say, I will not be getting behind the wheel of an actual vehicle for awhile yet...One more thing Covid has taken from me. 

Happy Anniversary...Half of my life? WOW!

Rob and I celebrated our 22nd anniversary yesterday.  May 20, 2000 was our wedding day, and though it was almost a quarter of a century ago, I remember it like it was yesterday.  We've been married for 22 years, however, we've been together 23.5 years.  That's exactly half of my life.  

I am 47.  I was 23 when we began working together, when we began to talk, joke around, share daily stories about our lives, chat about our kids, people we both knew, our families, and eventually confide in each other.  We became friends; close, trusted friends to each other.  We went on our first date October 30, 1998, an evening in Lincoln, consisting of pancakes at Village Inn and a quick stroll through ShopKo.  Nothing fancy, just us, spending time together, outside of work, getting to know each other even better.  From our first kiss, I knew he was my soulmate.  They say, "When you know, you know," and I knew.  But, now, a month over half of my life, now, I have been with this man.  That is crazy to me...I have now spent more of my life with him than without him.

That's not to say we haven't had our share of bad times.  We've gone through the worst, the absolute worst.  We dug ourselves out of the deepest of holes, both within ourselves individually, and in our marriage.  There is a song, "Remember When" by Alan Jackson, and it perfectly tells our story.  From, "We came together, fell apart, and broke each other's hearts," to "Remember when, we said when we turned gray, when the children grow up and move away, we won't be sad, we'll be glad, for all the life we've had..." that is our story.  No matter what we go through, in the end, it's us.  It's always us against the world.  It's been that way from that very first night.

There were times in our marriage when I would be so angry at Rob because I'd be sick, and I'd feel that he had zero empathy, zero compassion for me.  There were times I needed him to be there for me, to comfort me, and he wasn't.  I remember telling him, while hurt and angry and in tears, "When you said 'in sickness and in health' you didn't mean a word of it.  If I were terminally or had a chronic disease, I'd be on my own because you can't even help me out while I have something as small as a UTI or a sinus infection!"

When I got Covid 10/10/21 and he tested positive 5 days later, then Harley 5 days after that, it's like we lost 3 weeks of our lives.  It was all just a blur of exhaustion, muscle and joint pain, burning sinuses, coughing, shortness of breath, weakness, and misery.  But, while they recovered, I didn't.  I kept trying, I kept thinking it was just taking some time to get back into a routine, like when you have the flu for a week, and it takes two more weeks to feel all the way back to normal.  But the symptoms continued to increase, new ones popped up, and over the course of the next three months reality really sunk in.  This wasn't a case of "just push yourself and you'll make it" or "it just takes awhile to get over it" because I was having more and more symptoms, and noticing the cognitive dysfunction as well as the physical ailments.  

It was scary, and I felt so alone, so judged, so disgusted with myself.  But Rob stepped up.  After me being so frustrated all those years by his lack of empathy when I had a bad cold or a stomach bug, when it really counted, there he was.  He has been by my side at every appointment, through every test, evaluation, and therapy session.  He watches and learns from my PT, OT, SLP, and Neuropsych sessions.  He reminds me to use the skills they're teaching me, he monitors my fatigue level, he watches for signs that my heart rate is up, and he makes me take seated rest breaks when it gets to that threshold level he's learned about from attending my therapy sessions.  He can recognize when I'm getting dizzy almost before I do, just by my eye movement.  

Stairs are something that have been difficult for me throughout this entire time.  I get so incredibly out of breath, and my heart rate will jump up to 140-150 in a matter of seconds.  It's a goal I've been working on in both PT and OT.  This is difficult because there are stairs leading up from our basement, where our garage opens into.  There are also stairs leading up from the curb to our house.  The ones in front of our house are broken up by lengths of sloped sidewalk so they aren't quite as difficult, but the ones coming up from our basement are steep.  It is very difficult for me to walk up those without extreme fatigue and shortness of breath, as well as leg pain.  

One night, after running a couple of errands (I stay in the vehicle, as it's too difficult for me to go in and out of places), I was having extreme leg pain, and my heart rate and shortness of breath were both really causing me to struggle.  Rob and Harley went up the stairs ahead of me, as it takes me a pretty long time to go up them while trying to concentrate on my breathing techniques and tolerate the pain.  I tried to follow.  But I couldn't do it.  The pain was so intense, and my breathing was so labored, I felt as if I couldn't catch my breath at all, even using the tools I'd been taught at Madonna.  

I sat down on a spare wooden dining room chair we have in our basement and tried to get up the strength to try the stairs again.  I was trying to concentrate on my breathing and clearing my mind.  However, it's almost as if I blacked out or fell into some type of trance.  When Rob found me, I was cradling my purse in my arms, rocking forward and backwards in a self-soothing motion, hyperventilating, and had tears pouring down my cheeks.  When he put his hands on my shoulders to hold me still and stop the rocking, and to comfort me, it startled me, almost as though I was woken up and brought back to reality.  Only then did I realize what I was doing and what was happening.  

He talked me through my breathing, got me calmed down, and reminded me of my techniques as he encouraged me to make my way up the stairs.  I felt so humiliated and weak and like an invalid, but he never once supported those feelings.  He reassured me and comforted me and reminded me of all of the things Madonna has been working with me on.  

I had never imagined he would step up the way he has, that he would support me the way he has, and that he had the patience and the nurturing nature that he has shown me over the past 5 months while I've continued to have ongoing symptoms that are, at times, completely debilitating.  

Rob, this one is for you.  Happy Anniversary, and here's to many more years, no, decades, together, taking care of each other "in sickness and in health, 'til death do us part."

The Table

A few months ago there was a fire. It destroyed my uncle’s home, the home that had belonged to my grandparents, the place where I grew up. I recently learned that my aunt and uncle salvaged the huge, antique dining room table before the house was demolished.  It went to a family I have known for years, a family where I know it will continue to make memories and be full of food and laughter.
I lived at my grandma’s house for the first several years of my life, and still spent just as much time there as with my parents growing up and as an adult.  I was so relieved when my uncle agreed to move into the house after my grandparents passed away so that it was still lived in by our family.  It was devastating to me when he had the fire.  I cried for days.  Not only was I devastated for his loss of a home, his personal items, and two of his precious fur babies, but also for the loss of my childhood and the home that had been a constant in my life from Day 1.  
To know that table is in a home where it will continue to have a family sitting around it just makes me so happy, especially because it’s a family whose kids grew up with mine, a family I think so highly of for so many reasons.  I hope it creates as many memories for all of them as it has for me.
That table has been the setting of more Barbie adventures than you could ever imagine.  My cousins still refer to me as “the queen of playing Barbies”.  That table has seen everything, from my Michael Jackson and Brooke Shields dolls attending the Grammy Awards to Luke Skywalker and Princess Leia saving the universe to re-enactments of every single scene, start to finish, of Grease, and everything in between!  I cannot even count the times I set that table (plate, glass, knife, fork, and spoon, all properly arranged) or sat at it for Thanksgivings and Christmases and “cheeseburger Mondays” (which was a lunch of cheeseburgers and crinkle cut fries my grandma made every Monday for anyone in the family who was available to come, for basically my entire life.)
Well, now that you’ve all gone along with me on a trip down Memory Lane, I will end this by saying, I’m so happy it has found a place in another home, and I know it will carry many more memories for years to come!

Don't Blink Or You'll Miss It...From my old blog "They Grow Like Weeds"

Though I wrote this original blog 11 years ago (almost to the day), the same message still holds true today, for many of us, and it's a good reminder of what really matters the most. ~ Mamareeves74 5/21/22 

May 23, 2011

     With all these graduations going on this month it really makes me stop and think because 2 years from now my son will have just graduated from high school!  Where does the time go?!  How did this happen?  It's like I blinked and this little boy riding his trike in the backyard became a young man with this life of his own and plans for his future all without me even seeing the time pass. 
     When Riley was 6 we had Harley and I remember saying that I wanted to make sure I savored every single second of her first year because I didn't appreciate it enough with Riley, didn't take advantage of that precious time.  Then, on her 1st birthday I thought, "Wait a minute!  Where did the year go?  I was going to savor every second!"  That's when I realized that the time isn't flying because I'm not appreciating it and savoring it; time just goes really fast and kids grow up really fast and husbands and wives grow old together really fast and if we don't grab those moments and enjoy them, they're gone!
     I first started taking classes for my teaching degree 8 years ago.  In 8 years I've only had I think 3 semesters off, and that's including summers.  I'm taking 2 classes this summer even.  It's kind of become an addiction, this going to school thing.  But I think about how many hours of the last 8 years I was bent over a keyboard, my back to the room, while my kids lived and played and grew.  How many hours did my husband sit on the couch alone watching TV over the last 8 years while I was typing discussion board responses and article reviews and chapter summaries? 
      When I think about it, every single day there is probably some point within the day that I have to ask one of my kids or my husband to repeat themselves because I'm reading or sending a text, reading an email,  checking facebook, or doing some other type of electronic activity whether it be by cell phone or computer.  I think about all the times I've put up my hand to stop my daughter from talking or put up a finger indicating to give me a minute and I feel so guilty.  I think about the times my husband has told me a story about something that happened at work and he's had to repeat himself because I was otherwise distracted and didn't quite catch it all the first time and I realize how wrong that is.
     Time is something we never get back.  Childhood is something we never get back. 
     I learned of someone passing away this week who is only a couple of years older than me and only a year younger than Rob.  I don't know exact details or what the complete truth of the story is at this point, but I've been told she simply didn't wake up in the morning, that her husband discovered her that way and it was too late to save her.  When I imagine telling Riley goodnight as he heads down to his bedroom and kissing Harley's cheek as I tuck her into her bed each night, or giving Rob the customary peck goodnight after a long day of work and household chores, and then never waking up to see them again it just absolutely terrifies me.  Life is short and you just never know what tomorrow is going to bring.
     So, I'm going to really try to give the people sitting next to me or across from me or walking past me more attention.  I'm going to remember that if I stop typing an assignment for a class or an IEP for work, it's not going to disappear before my eyes.  I'm going to make an effort to give the people who are with me more of me.  Whether I'm hanging out at home with the kids or on date night with Rob or having a much needed dinner out with Angie, my attention will be on them because you can't take things for granted.  One blink, and everything can change.