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!

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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)

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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

Creativity · Family · Parenting · Perspective

Thursday Thoughts

Happiness often sneaks in through a door you didn’t know you left open.

John Barrymore

This is what writing is to me. It’s happiness. I love to write with paper and pencil. The feel of the pencil gliding over the paper soothes my busy mind. Every two weeks, I try to utilize 30 minutes of early morning devotional time to write. Words flow freely from my mind through my hand. Pieces of my soul marked in my handwriting. My middle of the night insomnia sessions are where my best thoughts flow. Will I ever write that book I’ve been dreaming of authoring since elementary school?

The journey is never ending. There’s always gonna be growth, improvement, adversity; you just gotta take it all in and do what’s right, continue to grow, continue to live in the moment.

Antonio Brown

Marriage – When I took my wedding vows, full of excitement and passion, I vowed to love him until death do us part in good and bad. I still do. I’m still promising that. It’s deeper and stronger than I could have ever imagined. What I don’t think either of us realized at that point is that we vowed to love – deeply, strongly, confidently, and with covenant – is that we might not always like each other. It is completely unreasonable to vow to like someone all the time. Sometimes, we don’t even like ourselves. The majority of the time, the real issue is with yourself. Your partner’s job, promise, and covenant is to love you thru that. Those valleys are where you grow. Look up. Valleys only happen between mountains. Start climbing.

Loving a child doesn’t mean giving in to all his whims; to love him is to bring out the best in him, to teach him to love what is difficult. 

Nadia Boulanger

Parenting – “My child is having a hard time. She is not giving me a hard time.” These words were on repeat this morning in my head starting at 4:32am. Our 6yr old woke up and needed to use the bathroom. Sleep did not find her again… and after two hours of cuddling, it was time to get dressed for school. Cue the sobs. Cue the stomps, whines, pointing, and tantrum. Deep breaths. She is not non-verbal. Her biggest character downfall is her inability to use her words to ask for help or admit when she is incorrect. It’s easier to stomp and sob. Going the tough route with her doesn’t help. She is stubborn and has to make the decision herself. When she threw her twisted sweatshirt at my feet, I refused to help her pull the sleeves out until she verbally asked for help. Her father did the same thing when she furiously swung her brush at him instead of just asking him to help her brush her hair. It was a doozy of a morning. 90% of them are nothing like this. I set a timer and told her she needed to have her fit turned off by the time it went off or she was destined for bed immediately when she arrived home with me this evening. Miraculously (tongue-in-cheek) her tantrum was over about 10 seconds before the timer dinged. Hugs all around before she ran out the door to the bus. Then her father and I considered Mimosas or Bloody Mary’s for breakfast… not really, but we both had to take our own frazzled nerves and anxiety down a couple notches before we came to work. Parenting is not for the weak-willed or faint of heart.

“I always loved running…it was something you could do by yourself, and under your own power. You could go in any direction, fast or slow as you wanted, fighting the wind if you felt like it, seeking out new sights just on the strength of your feet and the courage of your lungs.” 

Jesse Owens

I’m signed up for a spring 2019 half marathon. I didn’t run one in 2018, although I did take on a hill-filled 10K (actually 6.7miles). Half Marathon Number Five. I ran my first 13.1mi organized race a couple of months before my MS diagnosis. Now I need a goal to get my consistency back. After swearing I wouldn’t run another unless I was trained well enough to knock 10 minutes off my previous finish time, my focus has shifted. Many months of just drifting along… I’m ready to get back in the current and head for something. What it is, I’m not sure. The steady beat of my feet and breathing in and out assist my brain in sorting thoughts. We shall see… we shall see.

As you attempt to make big differences, remember to appreciate the small differences.  And remember that you don’t always have to reach the goal you set in order to make a difference.

Win Borden

Be kind today friends. Find a way to lift someone else up. Even if you are dwelling in the valley right now, reach up and out. Be gracious.

Wear the fancy dress. Tell the joke and laugh at it. Do that cannon ball into the pool. Dance in your kitchen. 


Much love — Jen

Perspective

Fatigue, Faith, and a Flaming Yam- Pt 1

Goodness. It’s been a couple of weeks since I’ve written. The title of this blog post sums up the month of August fairly well. I’m breaking this down into 3 parts simply because I need to get my kids up and dressed for church. #reallife

Fatigue has been a real bear this past month. A culmination of everything “make sure the kids have a fabulous summer” and then tack on a bacterial illness and two weeks of high dose antibiotics. Ugh. My body was DONE.

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My kids got my phone and caught me resting.

I NEVER put the blame for anything with my body on MS, but had to concede on this one. I couldn’t function or fight thru the fog to think straight. I had to change my thought process from blaming MS and those flipping lesions to accepting that this is a reason.

When I associate an image with the word Blame, it looks like a kid having a tantrum. I won’t allow this situation to lower me to that.  Honestly, in the depths of the fatigue I didn’t have the energy for a tantrum. My kids, husband and work all still require attention. This body still has responsibilities.

After a solid heart to heart with my sister and a day at a women’s faith conference, I admitted that the elephant in the room is this autoimmune disease. Even though I refuse to use it as an excuse, an excuse is very different than a reason. Many factors led to my body being worn out. Multiple sclerosis is the reason for this level of fatigue.

I’m happy to say that a week later, I’m starting to feel like myself again. I’ve hit the stationary bike twice, elliptical once, and ran my outdoor route twice. All modes of transportation are much slower than when I’m at my top. Exercise sharpens my mind and improves my mood.

I’m listening to my body.

Part 2: Faith

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!

Fitness · Health · Perspective

Triathlon

Swim. Run. Bike.

A couple of weeks ago, I completed my second indoor sprint triathlon.

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300m lap swim- this is actually only 6 down and backs in our local Wellness Center’s pool. 78 laps done in the previous weeks before I completely fried my hair with the chlorine and purchased a swim cap. Pink swim goggles and my navy one-piece- I felt pretty official! I managed to cut 1.5 minutes off my previous race time in swimming.

2mile run- Running is my jam. I like to get into a rhythm and just go for miles. However… sprinting is NOT my jam. Nerve pain and numbness in my leg plagued me most of the winter. My mileage was dialed way back. I didn’t expect the time to be good. Vomit was close to erupting, but I beat my previous two mile triathlon sprint by about 20seconds.

12mile bike- After the fall sprint tri, the organizer decided to add 4 miles to the challenge. My spinning seat wasn’t set correctly… my fault. Shredded legs and a little rub discomfort. About 2:10/mile.

Overall, I took 3rd female. I thought I would feel proud of my physical accomplishment.

Upon reflection, all I felt was humbled. Two days before this, I laid in the tube for two and a half hours. My annual MRI: brain and thoracic spine, with and without contrast- a yearly peek into my neurological system.

All stable. Nothing new. I’d have loved to hear that my lesions miraculously healed themselves. Same white dots in the same spots.

Randomly, I’ll have weird nerve and muscle symptoms. For years, I thought everybody did. Apparently not. MS does odd things.

Have you ever considered how fortunate you are to have working legs, fingers that feel, and a spine that doesn’t “buzz?” This isn’t for sympathy. These truly were not situations that I’d considered prior to about four years ago.

Humbled to be able to swim. Amazed at running. Grateful for biking.

 

Faith · Family · Fitness · Health · Perspective

I am thankful for MS because _____

“I am thankful for MS because ___________.”

This was a prompt on a MS focused social media feed I follow. It took me a moment to hone in my feelings on this open ended statement.

Before answering, I scrolled down through the many responses. They ranged from angry and bitter to grateful and inspiring. To each his/ her own on personal feelings, this chronic condition is as unique to the individual as freckles on a face.

My post was short. It has given me “perspective.” On both good days and rough, foggy brained and clear, fatigued and energetic, this condition has given me a different perspective on how to approach life in general.

Three years ago, I was going strong (albeit with a numbed right arm). I was training for my first half marathon, signing up before my diagnosis. I was pushing hard. Full of determination and pride for what I was working towards. Pride is so hollow.

The diagnosis was devastating to my family. Honestly, after researching my odd-ball symptoms, I was pretty sure that was what we were going to hear.

Fast forward three and a half years…. we’ve juggled and jumped the paperwork and financial hoops (doctors, insurance, medications). Adjusting accordingly to temperatures and fatigue levels is a daily occurrence. I’ve ran three half marathons and approximately 1300 miles. Some days are easy. Some days drag.

Perspective: My husband and kids get my energy and effort first. It’s ok to say no. My Best Yes might be to say no to outside activities, social gatherings, or work projects. What I choose to say “yes” to is done with more thought.

Perspective: It is more important than ever to make sweet lemonade from life’s lemons. Anger and bitterness multiply if I let it in. And  let’s be honest, it doesn’t fix anything.

Perspective: Compassion, a listening ear, and empathy are three of the greatest tools. I don’t know what’s going on with other people, but I can guarantee that listening without preconceived  judgement goes a long way. Not assuming that I know how someone feels or what they are capable of has been a humbling lesson to learn with MS.

Perspective: mobility- can you run? Can you walk? Can you use both hands? Can you feel with all your fingers? Don’t take it for granted.

Perspective: Humility. I am breakable. I am broken. I thank God for what I’ve learned, who I am, and what He is using me for.

Perspective: the gift of time.

I’m thankful for each and every day- good, bad, apathetic or productive.

MS is not a gift I’d wish for anyone, but the perspective it’s given me is.

Much love this Christmas season– Jen

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