I remember what Christmas used to mean when my kids were little.
It meant staying up late to wrap gifts and hide them under the tree while Santa ate all the cookies. It felt like we barely hit our pillows before the kids were awake and ready to demolish our hard work. My husband so couldn't hang with me. See, my picture was next to the word "insomnia" on wiki. I was used to waking up with our son every hour or so for the first 6 years of his life that I could be up and ready to take on a 10hr day at the snap of a finger...or at the gentle tug of my blanket ;-)
Now that the kids are 14 and 15, it's a little different. First and foremost, the kid that used to wake up constantly? Now sleeps like a rock. Second, our daughter is kinda over the baking-cookies-Christmas-Eve thing, which my husband is sad about. Third? We went through a complete financial collapse a handful of years ago. It's really only been the past 6-8 months or so that we've gotten to our feet. Christmas has been provided by my family, our church family, friends, and neighbors. Not just Christmas, but the occasional groceries, gift cards for gas in our cars so we could get back and forth to work, random gifts of things like movie passes, tickets to hockey games, and invitations to stay at friends' vacation homes for free so that we could take our kids away overnight...all blessings that others have provided out of their love for us and the incredible goodness of their hearts.
Merry Christmas.
So this morning, as my daughter and I got up to share some breakfast, we couldn't help but feel that familiar chill in the air of our house. The difference this year? Is that I turned up the thermostat and the heater came on. And the oil tank is full of oil that we were able to purchase.
Merry Christmas.
The opening of gifts? No, not this year. Because when I asked my kids if there was anything they wanted, they looked around with that searching sort of expression, then shook their heads. My son, the talker of the two, asked, "is it weird that I feel very...I don't know...content?" He just wanted others to have gifts in lieu of whatever we would have gotten for him. My daughter is equally content. She decided to bake cookies for her friends and knit random pieces out of yarn that she found in her room. She's calling them 'scarves', but they're probably only long enough to fit guinea pigs. No matter. As she knits, she smiles. She doesn't even realize it...
Merry Christmas.
To us, Christmas is an every day kind of experience. But we couldn't have felt it in the way we do today without the times of trial. Kind of like how ms has made me value and appreciate my abilities in a way I never did before. I think it's safe to say that most people get up and drink their coffee without understanding what a blessing it is to...taste it. For me, I never know if I'll actually taste it until I try it. If I can't, which has been my story much of this month, it's just warm liquid. But today? I can. And my goodness is it delicious :-)
Merry Christmas.
If anyone needs scarves for their guinea pigs, let me know. They're really quite beautiful.
You know, I'm not sure if it's the reaching + the placing + the lifting + the bending + the up/down of the head, which is connected to the neck, which has an abundance of holes in it...but grocery shopping is NOT kind to me. Never has been. And some trips to the store are more difficult than others.
Tonight was that night.
It was one of those times in which we found ourselves out of everything. And I mean everything, not those awkward moments when the husband says, "there's NOTHING to eat in this house!" because we're out of, like, peanut butter.
Anyway, this was not a trip for my little cart. No no. This had "large cart" written all over it, as well as a list my family had written on an envelope...front and back.
By the midpoint of the store, this was pretty close to what I was seeing:
And my thought process? Similar. Picture this...in my brain:
Thankfully, I knew exactly which aisles I needed to visit, as well as the approximate locations along the rows and columns and blurs of grocery items.
1 hour and 45 minutes later, I was dragging my cart to the check out line. Wobbling. Slightly swaying. Highly confused.
...really need that 'not drunk - ms' t-shirt if someone could get. on. that.
I unloaded my cart by pretty much stacking things atop one another, carefully avoiding eye contact with my cashier. It's almost like when your car isn't running properly? And you're approaching the stop light, feeling it wanting to stall? So you just kinda...keep going? Yeah, that's what I was doing. But with groceries.
I then loaded my $312.56 worth of cheaply, plastically bagged-ly groceries back into my cart, slowwwwwly pirouetted (is that even a word, or is that like 'plastically bagged-ly'?) to my handle bar, and set out upon the lengthy walk to my car.
Each step was a gift. Even the one where I tripped on those stupid concrete inserts with the bumps that like to eject items from your cart. My large cart began to feel even larger. Ginourmous, even. Like this:
You should also know that I do this thing where I get really close to my car and let go of the cart so it rests against the back and I can easily load the hatch. Well, tonight I kinda misjudged the process and let my giant cart go a little too early. No. Way too early. The cart-which-runneth-over picked up a bit of speed and...
WHACK!
...right into the back corner of my car. The force even shook my car a little, as well as drew the stares of a woman walking by. Know what? Don't judge, lady. Because you didn't have to push THAT around the store for almost 2 hours.
But it doesn't stop there.
I unloaded the cart much like I did inside the store...by throwing the bags on top of one another until the cart was empty. By that point, I was doing that "I must think everything through 3x before carrying it out" thing that I do in those rare occasions when my brain goes tornadic.
Started the car. Is this thing on? Yeah, it's running, right? Turned the lights on. Wait. Why's it look dark inside the car? Did I turn the lights on? :::look at dial on stick::: Or is this on? No. That's off. Okay, okay...that's on. It's dark outside, so it's supposed to be dark inside the car. Okay, foot on the brake. Put the car in reverse. Foot on brake - check. Look down to make sure we're really in reverse. Yep, totally in reverse. Wait. Is this thing on? Yes. Okay. We got this. Wait, who is 'we'? We. Me and you, ms.
Every process is like this. Until this lifts, that is.
Respect the grocery-induced ms brain fog, people...'cause the struggle is real!
A high schooler taught me that phrase so that I'd be cool ;-) Now you can be cool, too!
MS and I went to jury duty today. Jury duty at County court. Which is in a busy city. With parking garages and parallel parking. And lots of one way streets and lanes that randomly end with little notice. Don't forget functional railroad tracks.
I don't know about you, but one of my biggest coping strategies - developed over the course of 14 very stubborn years of living with ms - is "habit". Like a Wonder Twin power, if you will. For instance, I grew up in the area in which I reside. I park in the same row at the grocery store and the gym so that I don't lose my car. If I can't find a spot in that row? I leave. I know about how far the restrooms are at any place I go, which translates into knowing exactly how long I can (or can't) hold it. Ya heard?
Take me out of my little town, my office, my grocery store, or my gym? Well, let's just talk it out...
Google said today's drive would take 43 minutes, so I left 1hour and 15 minutes ahead of my arrival time. What Google didn't account for was sun glare, road construction, school buses, and the fact that every single person in the world was driving to work at that hour, though none were in any particular hurry.
While that brightly shining sun poses difficulty for each and every one of us on a morning commute, it (along with any extreme brightness or darkness) borders disaster for me. The reality is? My eyes do not adjust very well since the flare of the early 2000's. By the time I reached the city, about 5 minutes after I was due to report for duty, I could only see a few letters on the street signs. I was so busy trying to solve the Wheel of Fortune puzzle at each intersection that I didn't notice the lane closure up ahead. At that point, I had 2 choices...#1) be even later, due to the miles of cars who got the memo and were actually in the correct lane...or #2) get back in touch with my inner drag racer.
#2 ;-)
Parking garage was next. Fellow ms'ers with eyes like mine! What's the most exciting thing we can do when our eyes are seeing nothing but white spots? If you said, "drive into darkness!"...you are on my level!!! By God's grace, and only that, did I get my car into a space. I parked on a floor that was fairly empty so that I didn't risk putting black pinstripes down the sides of any fellow motorists.
Fast forward to entering the courthouse, where the elderly security guard with the gruff tone was barking at us to put our car keys and cell phones in the bowls prior to placing our purses on the conveyor belt. As I approached, I couldn't help but feel that it was my duty to not just be considered a juror, but to make this guy smile. So I said, in all my outward snark, "where are you goin' (with my keys and phone)?" To which he stopped, stared, threw me a half smile, and said, "to hell, maybe!"
Winning :-)
From there, I had to be escorted to the marshalling room (because I still had the ginormous white spots in my eyes a la flash bulb and could not read). Apparently, I was walking directly into a court room and that sort of thing is frowned upon. A very sweet attorney saw my near-tastrophe and guided me to safety.
My eyesight slooowwwwly returned in the marshalling room, where facebook kept me company and a select few jurors pointed and laughed at/with me for my interactions with the security officer, or maybe for the fact that I needed to be taken to the proper room, or maybe because I decided that a bottle of water did not qualify under the "no food or beverage allowed in this room" designation, but I didn't want to get into trouble, so I concealed it in my purse and drank it that way. Because come on. That ms thing that randomly grabs me by the throat makes me kinda thirsty.
:::another perfect opportunity for the "I'm not drunk, I have MS" t-shirt:::
The rest of the day was rather uneventful. Thank You, Jesus. Until it was time to leave.
The parking garage? Yeah, about that. I never looked to see which floor I was on, so I had to stop the elevator at each floor, get out, walk up to where my car would have been, had it been the proper floor...rinse and repeat.
I finally found my car, but the spaces that were open on each side of me? Weren't anymore. Not only that, but I was parked in...both cars over their lines and within approximately 6 inches of my car. No matter. The diagonal parking made it possible for me to squeeze into the one rear door. I began utilizing this strange combination of twisting and pushing and pulling and stuffing myself into the slim opening of the rear door. All I could think of was that time I got my head stuck in the wrought iron railing when I was a child. Mom had to put Blue Bonnet margarine on my ears. How embarrassing it would be to get stuck in my own car door - and not by the ears? I doubted that anyone at the security booth would have butter, and I was positive I wouldn't want it if they did. Alas, despite my laughter and resulting weakness, I found enough leg strength to push myself through the door. That's when I realized I was not alone. A woman had witnessed my sheer brilliance and...cheered for me.
I don't know what to say, people. I just keep it classy ;-)
I couldn't make this stuff up if I tried. Thus the title of my blog.
...you wake up at 6:30am with a burst of energy and drag a laundry basket full of towels that you can't see over the top of down 2 sets of stairs and get those in the washer and then come upstairs and unload the dishwasher and get the coffee on and preheat the oven for hash brown potato patties and whip the eggs up in a bowel for french toast and....you bend your head down to test your body to see whether or not today is another day of hanging out with your BFF, L'hermitte...but he isn't there. Neither is the gaggle of spiders that had been crawling all over you. And that little guy with the sharp object? Nope, he's not hanging out on your left shin anymore. The belt around your neck is gone, just like the vice in your chest. And you must have kicked your blanket of depression off the bed at some point last night, because it's not tangled up all around you.
I had that awkward moment this morning. And yes. That's pretty much what a single thought sounds like in my 200mph mind.
I suppose I can consider this flare gone, at least for this moment in time? Looking back, I realize it had been around for a few months. I tried everything that my medicinally challenged body can do to speed the "get outta here already" process along, but failed those as well. I ate and drank my dark berries. I switched from coffee to green tea + honey (GASP!). I tried, desperately, to exercise. For the first time in 14yrs of life with this very unwelcomed guest, exercise seemed to make matters worse. Walking hurt. A lot. Riding a stationary bike was better, but made everything vibrate before going numb. I couldn't recover for days and, by recover, I don't mean "let's do that again". It was more like "let's just sit nice and still".
Just this week, someone at work had asked if I'd lost weight. I politely smiled, thanked her, and said I hadn't noticed. Total lie. I haven't lost weight, but I've certainly lost a great deal of tone and strength. As complimentary as she intended to be was as hard as her kind comment hit me. I'm so used to an invisible disease and I've always liked it that way. Looking fine on the outside and fighting an inner war suits me just fine. But now, someone saw that my clothes aren't hanging off of me in the same way. What looks like weight loss? Is atrophy.
I came to the conclusion, while slouched like a blob in my desk chair, that this may just be my new "normal". MS-y, depressed-y, fluffy, saggy, and kinda weak. I had a lengthy conversation with God, which went pretty well, considering the fact that I was totally content with my pity party. As a result, I was reminded of all my "can do"s. My thoughts moved from my MS-y limitations to my family, friends, and the amazing stuff my kids are doing...all that they're becoming. I knew my weekend would be stellar. Breakfast with a friend! A special Saturday night worship service! Hang-out time with my daughter! My son's playoff hockey games! I realized that I have too much to look forward to...too much to give thanks for...and there's simply not enough time to feel depressed-y about some atrophy. And that it's okay not to accessorize my work attire with necklaces. Because with that belt-across-my throat sensation, I'd rather throw a necklace than wear it.
See? I got over myself. With the Lord's help :-)
But? I suppose waking up this way means it may be safe to try and get back on the horse. I'll definitely need a stool and lots of handles with which to drag myself back on, but...I suppose trying is the only option...
I had such an overwhelming response to my last post that I thought I'd do a quick follow up :-)
(thank you, really...)
My son went to the dance. Well, maybe we should refer to it as "the sit and talk", because that's what he said he did. And you know? He *loved* sitting and talking with his beautiful friend.
...yet another thing he struggled to do years ago. Hold conversations with peers.
In fact, he and I will occasionally joke about the one instance, during social story homework, where his inner sarcasm peeked through. It nearly caused me to wreck my car with both of us in it.
The story:
When did a mother (who worked a full-time-plus-over-time job, not-to-mention-dragging-MS-around) squeeze a portion of that homework in? On our 45 min drives home from therapy appts. I would slide the bottom of the ginormous packet under my thigh, quickly look down at it to read, and send a question his way. Exhausted...he would process, sometimes longer than others, and present his answer. We would then discuss whether or not that was the best response. I recited the following question:
me: "Bud, did you hear me? Can. a. hot. dog. be. angry."
him: "...yes."
What?
I was shocked. Stunned. Trying to think of ways to help him understand that hot dogs did not have emotion, though maybe they should? Who are we to judge? I stared into my rearview mirror with mind blown wonder...and drove off the road. But. Once I got the car back on asphalt, removed my heart from my throat, and regrouped...I mirror checked once more. I saw his face, pointed out his window toward the beautiful scenery we were blessed with on these appts, and saw something even more beautiful. His smile.
me: "so you're kidding?"
him: "...yes. What kind of question is that?"
me: "dude..."
While his struggles are behind him and I give the Lord all praise and glory for every ounce of healing, I can see the abundant blessings that came out of the journey. The hours he spent with therapists at that facility gave me hours of hermit time in their chapel. I didn't fit in with the other moms who clipped coupons for hours on end and talked about their homemaking responsibilities. They just reminded me of who I wasn't, so I went to hang out with my Lord...where I always fit in. Another blessing is the very close relationship my son and I have. He will not hesitate to talk through things he is experiencing as a teenager. To 'check himself', if you will. He is all the more in tune with the emotions of others. He is empathetic, nearly to a fault. Most importantly, he recognizes the Lord's hand in his life.
Some of you have asked what therapies we did that helped. We had done many, but the program that helped bring about his healing was through The Family Hope Center:
I'm not saying it's quick, easy, or the cure-all for everyone...I'm saying it worked for us. In addition, certain facets of the program helped restore function to my left side after a particularly evil flare. Thankfully, help and/or healing come in so many packages and God is the ultimate multi-tasker.
The money shot:
And this is the limit:
Be blessed, friends :-)
Romans 8:28 And we know that in all things God works for the good of those who love him, whohave been called according to his purpose.
The 'book' is always prompting..."What's on your mind?"
'course, the first thing I think of when I see that sentence is, "holes?"
BWAHAHAHA!
:::shameless ms joke:::
In all honesty, what's on my mind is...
...how there's so much heavy stuff going on right now for so many amazing friends.
I'm. talkin'. HEAVY.
You know what that's like, right? When your nightly conversation with the Lord starts off with tears. And you find yourself blasting right past the praises and just simply muttering..."Lord, where are You in this?"
That was me this weekend. Head feeling as if it was 152lbs, sinking down into Pillow (capitalized, because my pillow is proper), tired and sore eyes closing. Body buzzing. Electric shocks in shins. Gigantic MS hug across chest wall. I decided that I was done talking after that one, simple sentence. I was so over it.
With eyes closed, I began to 'see' things play out on the back of my lids. Things that had happened over the course of the week.
I saw hurting friends smiling as they greeted each other with hugs. The teary smile of a friend who received a home-cooked meal from someone who knew they could use a break. The joy in a friend's face as they tucked a surprise grocery gift card into an envelope and contemplated just how to plant it anonymously for a friend who's fallen on hard times. I saw a kid choose meekness when she had every right to make a different choice, and I heard the way her behavior affected the hearts of the grown ups who witnessed it. I saw my daughter's smile as she informed me that she hasn't had to take her rx meds for the inflammatory condition she's battled for 3 very long, very difficult years. Apparently, she's not in pain anymore.
not. in. pain. ANYMORE.
Wait. What? For real? You're amazing. Seriously.
(that was me to God...)
I opened my eyes for a second and noticed my son's outfit hanging on the closet door. It's for his first school dance.
Ordinarily, this may not be something a mother would get emo over? But it's totally emo for me. I closed my eyes again and the replay of his earlier struggles began. The hospital rooms. The diagnoses. The lengthy list of "you need to face the fact that he'll never be..." 's. The years of intense therapies. The people we formed life-long relationships with along the way. The blessing of the Lord's provision when we ran out of money. This boy's astounding perseverance. And his full and complete healing...
I see it, Lord. I see the pictures in my mind. I recall holding his hands, staring into his gaze, and assuring him that, "I know you're in there...and I'm going to get you out". I recall my collapse, totally not to be blamed on MS, when he announced to me that "somebody lifted the clouds!" The achievement of milestones began. His medical file sits on my desk, covered in dust. We don't need to travel with it anymore. Not since the pediatrician stared at me in disbelief and penned the following word:
"recovered"
Anyway, he's going to the dance. And yes, that's a banana phone he's talking on. Because he's funny, that's why.
...that's what's on my mind. The understanding that heavy things happen, but the assurance that blessings are everywhere throughout them all. The promise that God is in full control. The peace that comes from that knowledge.
Thanks, Lord, for giving me the play-by-play of my thoughts for just this past week. Maybe this is why the husband can't get on my level, because when I look at him and ask him what he's thinking? The answer truly is...
Sunday mornings are always times of great reflection. The house is quiet. The coffee is steaming. And my 'Elevation Worship' Pandora station is on...just loud enough to where I can hear the words.
My mind - yes, the 200mph one - gears up for the service we'll head off to. And the fun things we'll do as a family, even if that means simply watching tv together. Basically, Sundays are my favorite days :-)
...which is probably why this Sunday started out a little too sappy for the likes of me.
See, I've got this pesky flare that doesn't want to let go quite yet. I have to say ms is definitely an interesting condition. I mean, not everyone can say they have stabbing pains in their shins, vibrations in their feet, electric shocks in their face...and could seriously just sleep through every bit of that. MS is the condition that loves me back. Why just last night, I got a hug from it - in my chest. I stood there for a moment and wondered if that squeezy pain was cardiac in nature, because I never felt that near my heart before. But? I decided I was too tired to go to the hospital. I literally thought in my mind, "if this is a major medical emergency, I'm seriously too tired to have it." This. This is what 2 weeks worth of constant-yet-random pains will do to my mental capacity.
You all feel me.
Fast forward to Sunday morning. Today, the present tense. First day of fall - or 'autumn' for the proper folks - my favorite season. Steaming coffee. Gentle, chilly breeze outside. But...I'm worn down by these shooting pains. Feeling so over it all. Bending my head down to see if the L'hermittes sign is any better. Meh. Maybe a little, it all blends together right now. Feeling annoyed. Actually, feeling like I don't have much tolerance left. Asking God when this will be over with because it's not fitting very well into my life. Asking if I can please hurt tomorrow in lieu of today, because COME ON! Sunday is my favorite day! Click 'play' on the worship station and try to focus my mind on what's most important. And hear the following:
"...all who hurt with nothing left, will know that You are holy. And all will sing out hallelujah!"
Enter that awkward moment when you try to fight the fact that your eyes are doing that waterish thing. Sniffling. Swallow down that giant lump in throat. I'm so not crying...until I hear:
"Shout it. Go on and scream it from the mountains. Go on and tell it to the masses. That He is God..."
Enter full on tears. Staring down into coffee, quickly looking up so as not to get tears in it and water down the caffeine. Finding that, suddenly, I have a little more 'tolerance'. I realize that today is going to be another painful day. But in a few minutes, my family will be awake and carrying on about their morning with no idea that mommy was absolutely and completely losing her stuff just before they came downstairs. The basset hound knew, because he tried to lay on my foot and I was all, "seriously??? Do you not know I have a knife in that ankle and my foot is vibrating like a lawn mower?" Poor dog. Looking at me as if I'm an extra special kind of crazy.
:::deep breath:::
I will sing it in my heart. He is God. He is my strength and my comfort. I can do all things through Him...
And now I'm called to settle a disagreement between my kids. See? I really don't have time to devote to medical issues.
Be blessed, people. Know that I lift all of us up when I ask the Lord for a little extra measure of physical tolerance today. Because I do...
Sunday, September 15, 2013
My kids. Oh how I treasure them...
Sometimes, I wish others could see what I see in them. Or know what I know of them.
Like how my very quiet and shy daughter wakes up early every single day so that she can help with housework. What she doesn't finish in the morning, she takes care of when she gets home from school. No one knows this, because she never complains about it. To her, it's simply a humble, loving service to her mother.
Like how my outgoing, charming son reaches for my hand every time we're walking somewhere together. He's taken on mocking stares and has had comments thrown his way for it. "Mama's boy" and assorted jokes about how he should "be a man". He doesn't care. He smiles at me, reaches out and says, "gimme that hand". It's not that some of those comments don't sting a little...it's just that he puts me before himself.
What I see in my kids is resiliency, strength, and perseverance.
They've seen me fall. Bad. They've witnessed the nasty reactions to my shots. They've watched me go through flares. They've wondered why I was blinking repeatedly and not realized it was all because I couldn't see them very well. They've experienced my intense struggles with knock down/drag out migraines. They've heard me sliding myself down the stairs in the middle of the night in the attempts to drive myself to the ER.
What I know of my kids is their compassion and their strong faith in the Lord.
Because each time they've seen me fall, they've come to see if I was alright. Each time they saw me flat on my back after taking a shot, they sat with me in support. Each time I've come down with a migraine, they've tucked me into bed. My son even gave me his most prized, stuffed dinosaur from his days of toddlerhood during a particularly nasty migraine. It's name is "The Headache Dinosaur" and it takes away my pain. Why? Because my son said it does. That's why. And, as he places my Headache Dinosaur next to me with each headache, he always says, "God will get you through this..."
Sometimes, others do catch a glimpse of what I see in them. What I know of them.
Like when someone tells me about a beautiful lesson my daughter prepared for discussion during a chapel event at school. And how she has chosen specific scriptures to share with her classmates as reminders of God's love and faithfulness.
:::I cry:::
Like when a coach tells us that our son was referred to as "everybody's favorite player" during his hockey draft. And his skills are not at all what they're referring to. Or how a mother of an opposing, female soccer player tells me that my son is a gentleman, because he softened his play as they both battled for the ball.
:::I cry:::
Because that. That is the kind of man we are striving to raise. Let's face it, the recreational soccer league is really just not that important in the grand scheme of life. The way he conducts himself is.
Keep shining the light of Christ in all you do, kids. Do it all to His glory. No matter what this crazy life throws at you...at all of us in this family...at anyone who may come across this silly post..."God will get you through this". Whatever "this" may be.
Because I'm sitting here, comfortably nestled in my desk chair, fuzzy cat next to me, watching dust bunnies frolic under the gentle breezes of...the ceiling fan.
"Let whatever you do today be enough"
To say my house could use a good cleaning is like saying the inside of a 50yr old chimney could use a little dusting. It's an understatement of ridiculous proportions. And the lawn? That's standing slightly above my ankles.
"Let whatever you do today be enough?"
I don't know what constitutes 'enough'. I find myself searching for the things I've done today to see if they measure up to some magic line. I mean, I did get out of bed. I dragged a brush through my hair and across my teeth - different brushes. I went to work for a few hours and got a bunch o' stuff done. I even put food in the microwave and called it 'lunch'. Because lately...lunch is a victory. I often don't feel like stopping whatever it is I'm doing at work to dislodge myself from my chair, go to the mini fridge, remove it, unwrap it, and eat it. See how many steps that requires? On weekends, it's worse. I don't feel like stopping the nothing that I'm doing to even prepare it. I'm so over it. Lunch, that is.
"Let whatever you do today be enough???"
You are not helping, little phrase that keeps replaying in my mind. My husband, that guy who works 6 days a week (and has for the past 14 years), will be home in 3 hours. Yet, here I sit...observing moving conglomerations of animal hair in their natural habitat - as if I'm writing a piece for Nat'l Geographic. Mind you, the husband won't even notice the house or the grass. I think he's so blinded by my fabulousity that...no, let me be real...he's just too exhausted to notice by Saturday evening. And my kids? They do so much already. While their friends are enjoying fun things...my kids are doing dishes, helping with laundry, taking care of our pets, and writing grocery lists that I consistently forget to take with me. I'm seriously glad that they're too old to write those "What I Did This Summer" reports in school...
Hmpf. Certainly looks like a gorgeous day out there. So why is it that all I wanna do is carry this cat up to my bedroom, plop him on the corner of my pillow, lay down, and read my bible?
I realized today that I have a lot of awkward moments at the gym. How did I realize this? By having an awkward moment at the gym. Actually, two of them.
And I fully blame ms. Why? Because I can, that's why. All those copays and tests and medical reports give us certain rights...
Today started out innocent enough. I felt as if I could handle the treadmill in lieu of the stationary bike. I've not really been adventurous enough to try the treadmill for all of these months on account of how the marks on the toes of my shoes seem to have gotten a bit darker. And come on, it's one thing to trip and scuff your shoes whilst out on a walk around the neighborhood. It's a whole 'nuther to trip on a treadmill (aka 'rotating conveyor belt of moderate to severe injury'), fall, and be flung against the wall. I haven't felt particularly 'trippie' in the last few days, so I gave it a try.
I boarded the treadmill, pushed my ear buds into my ears, clipped my iThingie to my shirt, turned it on, turned it UP, started bopping my head a bit (thank you, Calvin Harris...you crazy DJ, you) and started to walk...
Within .10 of a second, I realized that the belt does not move until you actually TURN ON the treadmill. I tripped and caught myself against the handles that measure your heart rate. Unfortunately, the guy next to me totally saw it happen.
(This would've been the perfect time to use the "I'm not drunk, I have ms" mantra.)
My finale du jour occurred on the arm machine. I had pushed myself beyond exhaustion and gotten to that level of exercise where I really could not have cared less what I looked like. I slouched in my seat, wiped my face over and over, and felt as if I just kicked my workout right in the face! But I wasn't done. I thought I had one more set left in me! As I rested, I was enjoying my music a little too much and noticed an approaching man with a look of bewilderment on his face. I realized I was dancing in my seat.
(Again, not drunk...ms...)
Thankfully, the gym's slogan is "the judgment free zone". Because I've done things like...
excitedly wave at someone I thought I knew...but didn't
realize I needed to use the bathroom...5 minutes ago
walk straight into a very large man...face plant into his chest
place my bottle of water back into the cupholder of my bike...and miss
try to wipe my face with my towel...and poke myself in the eye
If someone throws a stare my way, I shall point to the wall as a reminder:
So don't judge me, fellow exercisers. Because the wall SAYS so. With an "e".
Meh, I figure at least I'm trying? Yes. At least I'm trying :-)
'Tis the time of year that we sit at end-of-the-school-year ceremonies and watch our kids magically transform from one grade to the next.
I'm pretty sure that - just yesterday - I dropped my daughter off at preschool and struggled mightily to carry my son in that ludicrously heavy carseat. Alas, they're now heading full speed into the 10th and 8th grades, respectively.
Ridiculous.
As I watched them stand in front of the audience, my 200mph mind flew through the years. I thought about holding them in the hospital, and cleaning the baby food off the wall (Mom was right, I let my daughter feed herself too early), and watching them board the bus for the 1st (and 2nd - 8th times), and all the medical stuff our son overcame, and all the awesome things they've accomplished, and how they're kinda getting old now but I'm so not...and then I began to think of the future and all the things I hope for them. Like that they'll always have an awareness of God's loving presence, and that they'll be able to go to the college they want, and have careers they enjoy, and find a godly spouse who loves and treats them with respect, and be a godly spouse who does those things, and that they'll never have their hearts broken and never have so much as a cold and never have a credit card and never go into a bathroom stall that's out of toilet paper and never have someone upset them or take their parking space........
:::you see where I'm going, and you surely feel the speed of my thoughts:::
Anyway.
While June marks the end of a school year and realization that yet ANOTHER year has flown by, quickly following comes the recognition of the year my uninvited guest moved in. 14 years ago, this year. Official dx, 10 years ago.
(CST, I don't know if you still happen across my blog posts from time to time? But I'll always cherish the loving way in which you delivered that news. You will always mean the world to me.)
All this to say...life isn't short. It's fast! And I praise God for every moment...
subjectively unpleasant feelings of dread over something unlikely to happen
unrealistic fear, worry, and uneasiness, usually generalized and unfocused
:::Thanks, wiki, for your spot on thoughts.:::
I've been anxious for as long as I can recall.
:::I'm worried this monkey in the box will come to life:::
:::just like this one:::
Seriously?
I never knew it was anxiety, though. I mean, I thought everyone incessantly picked at their fingernail beds and worried about...everything. Most children read books with nursery rhymes, but my favorite literary work was one of those giant, hardcover medical books. And with each turn of the page, I was sure I had that illness...that symptom...and that prognosis. I still recall informing my mother, sometime around age 6 or so, that I had a kidney infection. In my tooth.
Hypochondriac, much? Mmhmm.
I'm here to tell you, some 34yrs after my self-diagnosed renal/dental...situation???...that anxiety has been a more annoying, more pervasive, and more noticeable 'uninvited guest' than MS. It's just that MS seems a lot easier to talk about. Or maybe that's just the anxiety talkin'...child of the 70's...you just don't talk about certain things and this is one of them. That's why there's no car magnet for it. If there's no car magnet, I don't think we talk about it. #carmagnetpermission
I could go on about all those panic attacks that have woken me out of sound sleep, and the fun times that invisible elephant decided to perch itself upon my chest, and the exciting times I've nearly passed out from fear, and let's not forget those exhilarating times I've ended up in the ER with my heart pounding out of my chest. Actually, I think my favorite hospital story was the one where I was in for stomach ulcers. And they had to do an endoscopy. And I began to panic as they were putting me under anesthesia...and I reached out and grabbed the sleeve of the anesthetist...and started yelling (mumbling incoherently) for her not to leave me, because I didn't want to die via some strange allergic reaction to...and zzzzzzz...and...I woke up in some new "bracelets". Thankfully, the nurses in recovery realized I was really quite okay, just momentarily terrified, and immediately set me free. Then they got me some ginger ale. Ginger ale is important to my story, because this fear of medical stuff I occasionally experience isn't completely without merit. I did have a reaction to a medication immediately following the birth of my daughter. The lights went out on me...and didn't seem to come back on for a long while. I just remember the darkness, the commotion, the elephant, the commotion, the breath leaving me...intense pressure in my thigh as someone jabbed me with something.......the lights coming...back...on, the elephant getting lighter, and...eventually...ginger ale.
...but I think I said I wouldn't go into all of that ;-)
What I'd like to do is invite you to laugh with me. Because tonight was an anxious person's "you gotta be kiddin' me" night. Allow me to explain:
Tonight, my kids had an event at school. A big event. With lots of people. And when there's an event with lots of people, especially people I love (like our school family), I hyperfocus on making sure I say hello, yet do not interrupt people's conversations + don't stand out/be noticed + don't trip and fall while hugging someone (ok, so that's MS-related).
Keep that in mind.
My grandmother attended the event, which was a huge blessing, but her mobility is such that she needed to sit in a very accessible place. Where was that place? Um. Just shy of the absolute middle of the gymnasium floor. Like this:
Just a short while into the presentation, my grandmother goes to the restroom. And doesn't come back. I was no longer able to focus on the beauty of the event, because my mind kept saying, "there are over 100 people staring at you, because you are in the middle. of. the. floor."
I got up and moved. Oh em gee...they're all staring at me, because I'm moving from the middle of the floor to...oh, yes...they're probably wondering where I'm going, just like the giant token on the Price Is Right Plinko game. I chose an inconspicuous spot near the wall where no one would notice me. A place of solace from which I could enjoy the rest of the presentation. Ahhhhhh...serenity now :-)
The art teacher was up next. As she was making a heartfelt presentation of a student's award winning masterpiece, I realized that she was describing the piece that was...
Directly. Be. Hind. Me.
:::unintentional Dr Seuss feet:::
At that moment, my mind again said, "there are over 100 people staring at you". But this time, it was absolutely true.
PANIC SET IN. Time and motion slowed down around me. My legs went weak. My heart began to pound out of my chest. I didn't know what to do and, obviously, the floor had not opened and swallowed me, as I'd hoped it would do. So I did what any anxiety-riddled, panic-stricken woman would do. I smiled and slowly maneuvered myself...right in front of a coworker?
NO!!! NOT. THAT. WAY.
My mind did this:
I then shuffled my feet the opposite way, thereby crossing the line of sight between approximately 100+ kind people (goodness gracious, that's a minimum of 200 eyes!) and the beautiful work of art they were trying their best to focus on. Sans me.
I passed it off by accessing * and re-enacting * a memory from the Price Is Right:
It worked. Humor always works. And now that it's been about 3 hours, my heart has settled down, the panic is over, and I'm pretty exhausted.
How do I cope with anxiety? Well, pretty much the same way I cope with MS. I try to focus on this:
I'm grateful that the Lord felt it necessary to speak about anxiety on several occasions throughout His Word. I'm grateful for the progress I've made from the playpen era to the 40yr-old-me era. I'm grateful for things that help refocus my heart and mind, such as prayer, the Word, and good tunes!
And I'm grateful for my family, because they keep me from taking myself way too seriously...
Jill is my friend. Jill is also my coworker, who happens to be away on a school field trip. She is perhaps one of the last remaining working women who still receives a live paycheck, rather than having it directly deposited. And I got to thinking, doesn't she kinda like...need that? A brief chat confirmed my ramblings. Indeed, Jill would most certainly appreciate her paycheck in her bank account. Seeing as how I am the processor of paychecks, live or otherwise, I offered to make the deposit. We bank at the same place. There's a Dunkin' Donuts nearby. You see where this is going.
I approached the teller and presented Jill's deposit slip and paycheck, on which I scratched a sketchy 'for deposit only'. My mind was totally focused on what type of coolatta I would order when the teller took the items, smiled warmly, looked them over and said:
"I'll be right back, Jill :-)"
:::I've banked here 4yrs and she doesn't know I'm Tina? That's what I get for only banking via drive-thru::
My surprise and near offense shook me from my thoughts of 'vanilla bean or regular?', but quickly traded hands with my lofty imagination. This hole-filled mind took flight. It said:
"Shhhh, self. Go with it for a moment...we're Jill! We drive a minivan! We drink diet Pepsi! We're NOT 40! We can even walk in heels! HEELS, I SAY!"
...and then it said:
"Hey. We're...healthy."
Healthy? Oh, mind. Stop it.
Honestly, I don't know that I remember what 'that' feels like. I mean, seriously...what's it like to see clearly and with perfect color? Yet, as I stood at the teller's crafty cut-out window, staring around at the bland carpet and furnishings...I didn't notice my 'eye flies'! Probably because the carpet has a pattern that resembles eye flies. It's an ms'ers dream. Or nightmare. Anyway.
My mind was having a wonderful time imagining what it would be like to be...non-Tina. I could eat my lunch without those annoying electric shock sensations in my left cheek. That vibration on the top of my head? Wouldn't. I could breathe deeply without chest wall pain. That would be really, really.....really...........nice :-)
Alas, reality struck when the teller returned to thank me and provide me a receipt for my transaction. Or Jill's. She wished Jill a great day. And out I went...
Back to being Tina. Back to the random twitching, the kaleidoscope of eye flies, the chest discomfort, the buzzing scalp, and the chicken salad for lunch that may or may not feel a lot like chewing on tin foil.
Was I disappointed? Not at all. 'Cause I'd soon have a Dunkin' delicacy in the cupholder of that snazzy, slightly dented, heavily scuffed suv of mine. And that's a beautiful thing :-)
Also beautiful? Direct deposit.
Way more beautiful? That all of this is just temporary.
I woke up this morning feeling absolutely awful. Similar to that feeling you have after you've been in a car accident. Or fall down 10 steps.
Not at all like when you fall down 5 steps or less. This was definitely a '10-step-fall' feeling.
So I went back to bed.
Back to bed on a glorious Sunday morning, as my family members woke up in happy, joyous moods. We love Sunday mornings for the time we get to spend at worship with each other and with our church family. There was a beautiful breeze blowing. The birds were singing. My hounds were laying out on the deck, sunning themselves. Everything around me was just wonderful and peaceful and perfect...
But I couldn't stand the pressure of what felt like a head the size of 5 watermelons crushing down upon my neck. I had a choice. Actually, no. I did not give myself a choice. I went back to bed and placed the burden of my watermelonous head upon...my pillow.
Why is 'watermelonous' coming up in my spell check? That's totally a word. If it's not, it should be.
You know, I used to feel guilty for laying around during such beautiful weather days. I used to feel guilty if I missed going to church with my family because of how physically wrecked I felt. I used to feel guilty for remaining in my pajamas all day. I used to feel like my family thought of me as an annoyance, or worse...lazy. "Lazy" was always a very, very bad word growing up in my family.
Know what? I'm so over that.
My near 14yrs of living with ms have taught me much. One of the biggest things I've learned? Is that guilt has no place here. Living with chronic illness is challenging enough without the additional drama of every expectation I was placing on myself.
Totally over that. Or at least I am today.
:::one day at a time mentality:::
And it's just one of the many reasons I love the second half of the Serenity Prayer :-)
I have a way of spraying myself in the eye with my hairspray, because I use my right hand to wield the can and don't exactly have the best of right-sided peripheral vision.
Dear Johnson & Johnson: Please develop a high quality, 'no tears' hairspray. Thanks in advance.
I've inherited many of my father's undesirable traits, such as giant eyebrows (and migraines and freak neurology, but who's counting?), which means there's tweezing...lots and lots of tweezing. Part of my freak neurology is that one side of my body (left) is hyposensitive, while the other (right) is HYPERsensitive. Tweezing my left eyebrow is fantastic. The right? Torturous. I know the question you're asking, "why not wax, Tina?" Well, because I had a little accident with my hot wax kit once. It involved a hand tremor, which resulted in an unfortunate drip onto an eyelash? 'Nuff said.
I have friends who can't wait for their monthly trips to the salon. Me? Not so much. The brisk washing of my hair feels a lot like someone put rolls of quarters in their gloves. I don't go until my hair begins to overtake me. At that point, the pain is worth it.
Even the shaving of my legs can be something to contend with. Remember...left side is hyposensitive, the right side is HYPERsensitive. I shave a fairly numb leg, then muster up the courage to scrape layers of skin off the other - or so it feels.
Like I said - Beauty. It's painful.
Lest I forget the times I've stuffed myself into the spandex prison commonly known as Spanx for occasional fancy events in which I wished to fool others into believing I was 10lbs thinner than I truly am, or at least that I carry my weight differently than I do. Truth is, it was definitely all there, screaming to get out. By midway through the events, I was ready to cut myself free. Anyone without MS who wonders what the "MS hug" is can just stuff themselves into Spanx and viola...there it is.
Personally, since we're all about requiring labels on simple items, like "coffee-is-hot" and "don't-throw-your-hair-dryer-in-this-bathtub-full-of-water", maybe they should sew this on Spanx:
...ya know, so people are "informed" and all.
Speaking of hair dryers, I just had to replace mine. I can tell I'm not yet used to it, because I've hit myself in the head with the barrel. Repeatedly. Again, right handed, right-sided peripheral vision/spatial awareness issue...and a slightly longer barrel than the previous one. Resulting in literal bump on head.
I'm telling you - Beauty. It's painful.
Dare I move on to coloring of the hair? Just tonight, I covered my hair in purple goop that magically transformed my gray to 'light caramel brown'...all in 20 minutes. That's a long 20 minutes, so I like to do stuff like load the dishwasher while I'm passing the time. My dogs run away from me and my husband laughs. Go on and mock, people...you don't want me to let this go. Trust me. All's well until it's time to rinse - head over tub - resulting in no less than 12hrs of vertigo due to prolonged-almost-upside-down-ness. I did well tonight...only walked into the vanity once. I believe that's a new record!
Apparently, beauty isn't just painful. It's also uncomfortable. And can result in bruising.
Thank goodness for this assurance from Proverbs 31: Charm is deceptive, and beauty is fleeting; but a woman who fears the Lord is to be praised.
Did you ever just...kinda...miss your spouse? I mean, sure we live in the same house. We raise the same incredible kids. We sit next to one another in church. I cut his hair and nag him about trimming his goatee. He rightly looks away from me when I put color on my hair and walk around the house, looking a complete mess. We know what each other drives. Hey, that's important. One should never drive past their spouse and not recognize them. But something gets lost in the long work weeks. The events. The conflicting schedules.
I miss him.
And I just found out tonight, after we resolved to spend a solid hour in the company of one another...that he misses me, too.
We realized that it's been about 13yrs since we had a nice, overnight date with one another. I specify 'nice', because I had been mistaken in believing that we had other nice, overnight dates in between. I was reminded (thanks, honey) that they were not. At all:
There was that time we went out to the Cleveland Clinic for my 2nd opinion. After approximately 2 seconds of neuro exam and MRI review, the verdict was - I seriously did have MS. What a beautiful setting it was, looking out over Lake Erie, his arms wrapped around me. And me, inviting him to throw me in the lake and walk away. If that isn't romance, I don't know what is.
And the time, many years ago, that we went to the mountains. It was all fun and games 'til I discovered that ms and hot tubs don't mix. Nothing says 'I love you' like hoisting your wife up and out of a swirling steam bath, because she lost her legs. I could write a book entitled, "Things My Neurologist Told Me...Later".
Or how about our exotic time spent at a University, where I underwent a study reminiscent of a Bionic Woman tryout. I was so frustrated with that stupid game where you have to put the pegs into the wooden block as fast as you can that I nearly threw it against the wall. But I'm a lady and I keep it classy. Especially when I'm 'on a date' with my husband, who was anxiously watching me from afar. To this day, I will not play the peg game at Cracker Barrel. Not unless I can throw it in the fireplace when more pegs end up on the table than in their respective holes. My husband will not allow that.
What. Ever.
That said, we've decided that we need to make some new memories. Ones that don't include diagnoses, or loss of function, or even a series of neurological exercises...exciting as those may be. This is a Christ-centered marriage, not ms-centered. MS is not who we are.
This is who we are:
Parents who embarrass their teenaged children by taking 'self-shots', complete with strange faces and gestures. Yes. This is who we are.
(Note to self: Leave above pictured MS Challenge Walk windbreaker at home while away with husband, or new memories will look a little like old ones.)
Just as my bologna had a first name back in those fantastic 70s commercials, my 'oooooh' has a first name...and it's spelled F-A-T-I-G-U-E. Apparently, my 'oooooh' has a last name...and it's spelled L-A-S-S-I-T-U-D-E.
For those who don't know, because lots of us do: LASSITUDE—unique to people with MS.
Generally occurs on a daily basis *uh huh...
May occur early in the morning, even after a restful night’s sleep *check!
Tends to worsen as the day progresses *UH HUH...
Tends to be aggravated by heat and humidity *or forced hot air heat...
Comes on easily and suddenly *right...right...
Is generally more severe than normal fatigue *you ain't kiddin'!
Is more likely to interfere with daily responsibilities *heck. yes.
MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment.
The cause of MS fatigue is currently unknown. Some people with MS say that family members, friends, co-workers, or employers sometimes misinterpret their fatigue and think the person is depressed or just not trying hard enough.
Mmm hm. I can see how they'd think that.
Because let me tell you, I became SO tired.............. :::scratch that::: ...............fuhhhh teeeeged at the end of my work day, that I found myself foggy brained and barely able to keep my eyes open. Earlier this week, I asked my co-workers if they were suddenly exhausted. I literally contemplated whether or not there was truck exhaust coming through our heat vents in the office. But, because I had no headache or other general feelings of ick, it finally sunk in. Fatigue. Of the ms-variety. Most likely the result of fighting an illness a few weeks ago and becoming severely dehydrated. MS, for me, comes on full force after I've healed from a random sickness. I'm always left to wonder what it will bring. This time? Visual disturbance and a nasty case of the sleepies.
MS fatigue, in my humble opinion, is the suckiest of all invisible symptoms.
I battled it many years ago. How? By sleeping. Much of my day. I don't have that option now, because I'm working FT. I need to. And my workplace is awesome. But what must they think when I suddenly do my work while standing up in my cube? Or, if I forget to occasionally stand or walk away from my desk, what must they think when I'm apparently asleep with my eyes open???
Yesterday, I was working on a project that involved reading a report of company listings (small font, lightly colored), punching the company's name into the computer, and seeing if there was activity. Four hours and approximately 560 companies later, I was asleep. With my eyes open. It took every ounce of effort I had to break stride and complete a different task. Every key stroke was painstakingly carried out. I found that I missed an entire step in my task. Well, I didn't find it...my boss did. I gladly welcomed my new task, which was to be completed out in the chilly warehouse! I was doing all I could think of to rouse myself from my state of asleep/awake, inclusive of going into the restroom to jump/jog in place. Got a visual? I could barely communicate, much less intelligibly. My poor boss. That's all I can say to summarize. Just...my poor boss.
About an hour later, my shift was over and I was finally 'awake', ready to drive home. I did what I always do...call my mother. I told her what happened and how upset it was making me. Her suggestion?
"You need to start drinking coffee again or something."
This is me - ending the 17 day streak sans coffee - hoping to successfully drag myself through this gorgeous day...
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