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

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!