Health · Perspective

Invisible Symptoms

Today I’m filling a chair. That’s virtually it. At work, I’ve answered the phone (a lot), taken messages, updated the website and made a to-do list. But…. much of that to-do list will just have to wait for tomorrow. My brain is altogether exhausted.

When a brain is tired, one might think it’s from being a contestant on Jeopardy or perhaps sitting at an important round-table business meeting. Today, my brain is fatigued from a main platter of MS with a side of crazy female hormones. Friends, that’s a bad combination!

Last week, my husband and I trekked to Denver for my annual neurology appointment. Overall, I’m doing very well and MRI-land is completely stable. We both love being active and outdoors, so in addition to the yearly neuro appointment we spent the day in Rocky Mountain National Park.

I met with a new-to-me neurology NP for this appointment the day after our hike. This was the most informative appointment I’ve ever experienced. Perhaps this was because she had a medical student with her? The med student actually performed the physical exam (the works – walk on toes, follow finger, tell me when the vibration stops on your foot…). With each test, she explained whether my results were “normal” or “typical of MS patients.”

My three biggest concerns were addressed. Two of these, I’ll talk about here. Numero Uno is fatigue. I found myself needing 20-40 minute naps a few times a week this summer. If you read my previous post about our summer activities, you’ll see a constantly on the go schedule. Who had time for naps?!

Guess her prescription. Seriously, just guess…

It was to…. TAKE NAPS. Her exact words were “a nap can do more for you than any medication I could prescribe. You need to take the guilt out of getting rest.”

She explained that where the lesion is on my spine, I have a “loss system with invisible symptoms.” When my brain contacts my legs (and thankfully they still do), my legs hear the request as a whisper and they SCREAM back. It takes my body more energy to do things because the lesion slows down communication.

When my legs SCREAM back, it comes across to the onlooker as over-reactive reflexes. This was my second concern. My feet and legs have such a touchy reflex that spin class is difficult. As my body heats up from exercise, they become even MORE over-reactive!

Her response: “Get used to it and be happy about it.” Well…. alrighty then… She further explained that I should be ecstatic that my legs and brain are communicating. I guess that means that I’ll strap my feet into my spin bike and just roll with it (pun intended).

After my physical examination, she told me that I’m doing all the right things. I’m drinking a plethora of water daily and my nutrition is good. Continued exercise and guilt-free sleep are my  prescriptions in addition to the Tecfidera.

When I relayed this information to a nurse friend of mine, her response was that it was refreshing to have a medical professional NOT push medication. Instead, she recommended I go back to the basics of self-care: sleep, exercise, and water.

Thus, I have. I napped both Saturday and Sunday. I exercised in some form 6/7 days last week. Water? Always 90-110oz a day.

I can’t reverse the damage already done, but I can make sure I’m doing everything possible to prevent progression.

Much love — Jen

Faith · Family · Health · Love · Parenting · Perspective

Long Hiatus

Back to writing. This has been a goal for months. Cue the triumphant music!

Shortly before this long writing hiatus began, my life was increasingly frazzled by anxiety. I’d been battling this for months… basically the majority of 2018. After suffering a couple actual legitimate anxiety attacks while my husband was away on a trip and then (quickly after) chosen to sit on the jury for a brutal murder case, I sought help from my family practitioner. She helped me get chemically back on track with the assurance that with a very small amount of anxiety medication, my already strong coping skills would kick back in.

She was correct. I stopped wanting to run away from my family. The crazy sweating, racing thoughts, and desire to be alone stopped! My coping skills like reading, exercise, washing dishes, etc… were able to climb back to the surface and work their magic.

Good thing those stopped because baseball started for my son in March and ran thru July. Even after 4.5 straight months of baseball, he was disappointed when it was over! I ate more hot dogs in those months than I have in my entire life. We started the season wrapped in blankets wearing gloves and ended it sweating thru tank tops and shorts. Totally worth it!

baseball blog
Pee Wee District Champions!

My daughter had 6 weeks of a coach pitch/ t-ball combo in the mix as well. The kids had us hopping all summer. Something at the ball field Monday, Tuesday, Friday, Saturday (all day) and Sunday evenings means that this mama is investing in better lawn chairs next spring. It’s on my Christmas list. The kind of lawn chairs that fold up and have hydraulic shocks — the deluxe model – will be worth the cost.

We took a family vacation to South Carolina in June to visit family and introduce the kids to the Atlantic Ocean. They flew for the first time. Nerve wracking for me, but honestly, they gracefully handled layovers, a diverted flight to Charleston and tarmac time due to a storm, turbulence when our pilots squeezed us into Columbia’s airport before the storm hit again, and security when SOMEONE put an open water bottle in my bag unbeknownst to me. (eye roll)

family
Family in South Carolina

After a flight to Las Vegas in March, my spine/ lower back started to hurt. After solid scoldings from my family practitioner, husband, sisters, and a nurse friend, an MRI revealed a bulging disc at L5 – S1. This is actually a relief given my MS history. I was flippant about how serious this was until I stopped being able to move without pain. Up, down, walking, sleeping, standing… it was all painful. I started Physical Therapy. There it was revealed that along with the disc issue, my SI joint was also rotated. How incredibly humbling it is to go from running half marathons to not being able to walk! Anyone who has been thru PT knows that it’s a slow, meticulous battle. I graduated PT, bought a SI support band (Serola BioMechanics gets 5 stars from me!), and recently have waded back into running. It’s only one mile at a time, but as the saying goes “you have to learn to crawl before you walk.”

Mixed into the fun was VBS, fishing, playground time, family time, wheat harvest, fall crop planting, our full-time business, and many many more activities. Summer seemed to rush by. I’m not sad it’s over. It wasn’t a hustle, nor did it feel terribly stressful. It was simply FULL. Full of good memories and time spent together that we all appreciate.

Here we are now. Back to school and September is already rolling. I will try to write more regularly. I’ve felt it stirring in my mind and my fingers to get back to it.

Much love — Jen

Faith · Family · Health · Parenting · Perspective

Three Legged Race

Just in case you’re wondering if I’m still here… yes… yes I am. I wrote an entry a couple of weeks ago, published, and deleted it. I wrote last week, but after a re-read it was just too personal (see family issues below).

My crew and I just crossed the finish line on three ridiculous months of juggling all-things-life. giphy-3

Summary:

  • Busiest season at work
  • Husband/ business partner gone long-term twice
  • Multiple school programs
  • Volunteer activities at church and in community
  • Christmas gathering – then Christmas again – then Christmas again
  • Annual MS scan and labs – I always EXPECT these to go well, just anxiety.
  • Driving the mom-bus to gymnastics, 4-H, and youth group
  • Kids’ orthodontist appointments – EVERY MONTH!!! What?!?!
  • And then we slide into this past week….
    • Family issues
    • Finding out I am signed up for treats both Tuesday and Wednesday at school
    • Being called a “dirty whore” by an addict on my way into the pancake supper at church when I asked her if she needed help. Then she looked at my husband and said he’s “a good guy” and we “have nice kids.” Right…..

So there you go. It was more of a three-legged race where we were also supposed to be rubbing our bellies and patting our heads while singing Christmas carols with gusto.

Preposterous…

giphy-2

My end of the year reflection is an annual occurrence. As if on repeat, my head shakes at lunacy we’ve just subjected ourselves to. Following closely behind the head shaking is a vow that “next year will be different!”

We can only hope.

 

Family · Fitness · Health · Parenting · Perspective

Running Away from Monday

It’s been one of those Mondays where I put on my running clothes to run before the sun came up.

But I haven’t ran yet.

It began to thunder, followed by a downpour. Intermittent sharp cloud to ground lightning.

Then I had to get the kids to daycare and myself to work – still wearing my running clothes. Call it the definition of a “Casual Monday?” Perks to owning the business and staying behind a desk.

The weather cleared. I was going to use my lunch to run. But I didn’t get a lunch and ate at my desk because customers LOVE to call and show up at lunch.

Then another thunderstorm moved in.

And I’m still sitting here at the end of the work day wearing my running clothes. I’ve been wearing my “Flipbelt” stuffed with my fully charged iPod and ear buds all. day. long.

flipbelt

The kids go to VBS for two and a half hours tonight. I will be using that time to run, if not outdoors then at the gym.

I took five minutes to read about an extreme “reset diet and workout routine” that ended with fabulous results. The author of the article- who I might add was single and childless – talked about needing two hours every day at the gym.

I can’t get 30 minutes for a nice leisurely 5K.

A woman can only be functioning for so many hours of the day.

Bleh. Can I just run away from this Monday?

 

 

Family · Health · Perspective

Jelly Belly

Most days I eat a very healthy vegetable and protein based diet. But then there is a day like today where I eat jelly beans and deli ham… but mostly jelly beans.

We made a long weekend last Friday-Tuesday of my annual neurology appointment in Denver. I had the car loaded with suitcases Friday morning before work. My husband and I locked up the office at 5pm, threw the cold snack bag in the car, and headed west grabbing the kids from daycare on our way.

Other than my son either not packing or losing his entire stack of pants and shorts somewhere between home and Winter Park, our time in Colorado was very smooth. We stayed at a friend’s condo. Fishing, biking, hiking, a mine tour, a gorgeous mountain morning 5K run, and the historic Georgetown railroad filled our time. Tuesday morning, we cleaned the condo and started back to Denver. One child got motion sick coming down the pass and lost all his stomach contents into a “Brain Flakes” toy jar.

My neuro appointment went very well. MS is still stable! HALLELUJAH! Those words alone are worth the 30 minute extra wait, hitting rush hour traffic, a tire low on air on interstate, and not getting home and in bed until almost 12:45am.

Full work day on Wednesday.

Thursday was our local county fair’s first full day. My kids joined 4-H this past year. My son took a Geology box with 18 rocks, minerals, and fossils.Geo BoxMy daughter took a single stemmed zinnia flower.

Then we volunteered at the Kiddie Barnyard for two hours and ended up with a new housecat that the local veterinarian had up for free adoption. After we lost our 15 year old feline family member in December, I swore the only way we’d do it is if the potential pet met my very specific requirements.

Well… we walk in to volunteer for a couple of hours and there he is. Met every box on my checklist: 1) Male. 2) 4yrs old. 3) Litterbox/House trained. 4) Neutered. 5) Laid back.

He came with a sweet hand-written note from the person who surrendered him complete with how he likes to have his head rubbed and eating habits. He was obviously loved by his previous owner. My guess is the person either moved to a pet free rental or went to a nursing home.

Meet Sullivan – aka Sully. (This was when we first saw him, He has since been to the vet for a solid bath and his vaccinations.)

Sully

Following our pet adoption, the kids and I worked the 4-H food stand for 6.5 hours. I was the main cashier for $3000+ in food sales. That was more mental math than I’ve done in years. Doing it mentally was faster than trying to use the calculator. Needless to say, my brain was unable to function very deeply when I got home late last night.

So… here we are: A new housecat. Over a thousand miles for my neurology appointment. Projects entered in the local fair. Volunteer shifts done. Absolutely no motivation to be productive at work or at home. And one big bag of jelly beans.

Thank goodness it’s Friday!

Health · Perspective

Acceptance and a Hat

Pale. Reflective. Lacking melanin. Blinding.

My whole life-all 35 years of it- I’ve been light skinned. Not just kind of tanned or even slightly rosy, I’m a creamy shade of pale.

As a child, I had freckles. The summer would start with my nose and cheeks lightly sprinkled with light brown dots. By the end of the summer, the tip of my nose was a solid freckle and my arms, legs, and back sprayed with miniature splotches.

Regardless of the truckloads of sunscreen my mother and I would apply, I’d burn and peel. Burn and peel. Burn and peel. Burn. Blister. Peel. Blister. Peel. Back to white.

 

cousins
Me- 2nd from right with my sister and cousins at an Easter Egg Hunt – 1988

 

My sisters both received enough dominant genetics from my mom’s darker eastern European heritage to tan. I, seemingly, obtained all recessive genes and favor my dad’s side.

School wasn’t any better. With only a couple of pale, freckled friends, everyone around me always had a healthy glow…. and the glow wasn’t just the gym light reflecting off their legs during basketball season.

Thru the years, I tried tanning beds for special events like prom. “Your body will build up tolerance to the sun” is what people would tell me. Ummm… about that….

I’d mow the yard without sunscreen on my legs- only slathering it on my shoulders, neck, arms, and face. I tried spray tanning (Ooompa Loompa!) All of my attempts to be non-reflective turned out to be utter failures.

After having a suspicious mole removed from my hair line in college, I gave up completely. Truly. I’m now a sunscreen loving, long-sleeve wearing, floppy hat, be kind to your skin advocate.

 

fishing
Key West, FL – 2018

 

Isn’t it strange how it takes awhile to accept certain attributes about ourselves? Typically, these are the characteristics on the outside- the ones we think others are focusing on. Ooooh, those judgy eyes and snarky quips that start when we’re kids dig deep and embed into our being. It takes years to work those mean, lingering voices out.

The fact is these small peer observations don’t actually make us who we are. I’m no better or no worse because I’m pale. It doesn’t affect who I am in my soul. I’m simply me packaged in a creamy shade of pale on the outside.

Simply put: Some of us are born to be in the sun. Some of us are meant to wear a hat. 

 

 

Faith · Family · Health · Parenting · Perspective

Heart Check – Thursday

A podcast I listen to starts out with a few questions from one host to another. They call it a “heart check.”

What’s in your ear?

What’s pulling at your heart?

What book is in your hand?

I’ll also add for this post (because I like food)…

What’s in your mouth?

So, Jen, what’s in your ear lately?

–Yesterday, it was my Pandora thumbprint station. I was solo in the office for most of the day, thus almost a completely uninterrupted soundtrack for the day. Eclectic, as is my taste in music, songs range from the last 6 decades and a wide variety of genres. A personal favorite is Ashokan Farewell, but that might be followed up by Rump Shaker (Wreckx’n’Effect), a song from Ray LaMontagne, the Avett Brothers, Meghan Trainor, Amos Lee, Lee Brice, George Strait, or Casting Crowns (among many, many others).

What’s pulling at your heart?

–Of course my kids and family. Anxiety. Worldwide events that are completely beyond my realm of physical connection. How can I contribute to those around me? How can I be a more patient mother, wife, and friend? After a meeting last night…. when will I ever stop being socially awkward?!!!! 30 years of socializing hasn’t made me a social butterfly. Still inept at the art of surface-style conversation.

What book is in your hand?

–I truly love my 5:30am quiet reading time. I am awake to see the sun rise quietly and peacefully. The past month, I’ve reread three Anne of Green Gables books: 1, 3, & 4. Apparently somewhere in the last 25 years, book #2 disappeared. My devotions in my study Bible are out of Psalms. This morning, I finished “365 Thank You’s” by John Kralik. Focusing on gratitude, he turned his life around one thank you note at a time. Inspiring!

What’s in your mouth?

–Like all people vainly trying to shed the winter carb-fest padding,  focusing on better food choices, I’ve been packing a bountiful amount of fruits and veggies in my daily lunches at the office. Due to my MS med, I have to hit the carbs first thing in the morning to settle my stomach. Therefore, I make my lunch vegetable based instead of building it up from bread or pasta. Almost all my veggie-based meals feature the previous night’s protein choice, aka leftovers. Makes for a lot of variety! Yesterday’s masterpiece:
salad

Mixed baby greens (thank you husband for buying a super large container of these at an amazing discounted price!)
Fresh Mushrooms
Leftover BBQ Chicken
A handful of French fried onions (the ones without whey)
Balsamic Viniagrette (I only use vinaigrettes, no dairy! But if you go this route, be sure to make your own or read the labels.)
I wash and re-use this Subway salad container daily. It’s the perfect size for my lunch bag.

That sums up my Thursday morning heart check. What does your heart check look like today?

Much love — Jen