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