MS in the Time of Corona & Current Status

Time to catch up on documenting my MS journey for those of you following along with me, so thanks for reading. Lots to say...buckle-up.

Justin and I at Gunlock Falls after spring rain in March.

I'd been doing well, basically smooth sailing as we moved into COVID. Having a chronic disease that has rendered you immunodeficient has been, well, scary. I had to do some mental work and remind myself not to live in fear. It's a decision I made when I was diagnosed. There is a lot to be afraid about when it comes to MS. If the disease progresses I could lose my mobility, my career, my cognitive ability, sigh. Now a fear of catching a disease that might take me out? It's a little much. Learning to live with the unknown has been a long and painful process for me. I tend to default to fear, so I had to pull myself out and keep moving forward.

Here's the virtual Mrs. Robins with tech glasses
because I learned screen time gives me headaches.
This might have been the last good hair day I had. 

As far as precautions in the time of Corona, I did begin working from home as schools closed. Teaching online is another blog post for another day. I rocked it the best I could, but the fact is I missed my kids and I missed my teacher friends and I missed the energy I get from people. That being said, health-wise it was great to sleep in, to get those morning walk/hikes and be away from people as Spring has notoriously been the WORST time of the year for me. I think it's a combination of allergy season plus prolonged exposure to kids and just overall fatigue. I always crash during spring, heal during summer...so no complaints there. I also secretly hate to shop (and cook if I'm being honest), so I was thrilled to have Justin step-up and take care of shopping AND I did my part as a good citizen to order takeout and maybe go to Swig often, by often, I really mean daily.

Big news! For several reasons it was time to switch-up my career. When a vertical promotion was no longer an option, it pushed me to do what I've always wanted to do: teach high school English. We have a new high school in my community I've had my eye on, the stars aligned and I've landed exactly where I need to be: Crimson Cliffs High School. I'm beyond excited to recharge my passion for teaching and teach older kids the higher-level literature and writing I love the most. I am SO EXCITED! My entire summer has been prepping and I still feel like I'm not there yet, but it'll all work out. I did tell my administrator and new team about MS and everyone has been wonderfully supportive.

Spring was rough...really rough...melting into an equally rough summer.

Minor challenges: Sally, my bulldog, had cancerous mammary tumors, surgery and recovery--which was more work than I thought, lol! AND I am allergic to dogs, so having her inside for a bit was tricky. She's great--outside again, balance restored.

Master bed/bathroom remodel--It's been years coming. It will be lovely. We have relocated to Nate's room, on a smaller bed, surrounded by baby Yoda posters. All my nice clothes are packed up and I've been living in the same 3 pairs of yoga pants all summer. Project status: still ongoing.

There was sadness too as a dear friend in my ward passed this summer from a long, courageous battle with cancer.

Disappointments with cancelled events, trips, missed opportunity, not really saying goodbye to a school community I love, watching kids struggle, school ending on a weird note, national conflicts, missing connections, etc.

I've been having major struggles with my kids. Huge ones. Some are ongoing. With three teens, there are bound to be challenges, but I got hit with a couple I never anticipated and it has been one freaking rough road. I'm trusting God and tapping into all my resources to help them.

Heaven help me. Despite challenges,
they are everything to me.

I had some weirdness with health. It started with heart palpitations which were uncomfortable and scary. Was it stress? Was it Copaxone? Was it my beloved Sonic Neuro drinks? Eventually it passed but it took a couple months.

I was formally diagnosed with a speech disorder, related to MS and working in a career where I talk--a lot. I basically have vocal fatigue, short-out and have a gravelly voice. I've been doing speech therapy all summer and am hoping for a better school year.

Then, out of nowhere, I started reacting to my Copaxone shots. Not just randomly, but each time. After my night shot I'd start having muscle spasms and uncontrollable shakes. It was awful. Usually taking Aleve and benedryl staves it off, but it continued.

The numbness came back.
I've become used to a life with minimal numbness. In May, my original numbness from my calves down came back, as well as numbness in waves.

When I was diagnosed, my neurologist said she wasn't sure if I'd get full sensation back, but I did, and suddenly having that tangible reminder of what was still around was not appreciated.

My neurology team and I decided it was a sign to switch MS meds. I was discouraged. I really planned on shots for the next 30 years because Copaxone had worked beautifully with few side effects.

I started on Tecfidera--an oral medication. First week, no prob besides flushing, which is ridiculous because I already tend to be shades of red (always) on my own. The flushing is like a stinging--like your whole face is on fire. Sucky, but not long lasting.

Flushing side effect. Like I'm not already
red enough on my own! Sigh. This one
stings, super weird. 

I did have a hilarious conversation with a very nice Tecfidera rep when I started asking exactly how the medication works. I knew Copaxone inside and out. I didn't really get a clear response. This drug seems to be mostly magical (insert eye-roll) and scientists can't really explain how it works. Turns out it kind of reprograms you on a cellular level. Too much to write, but it works differently that  Copaxone.

Week 2 (first week in July) is where you "titrate up" going from 120 mg. x 2 a day to 240 mg. x 2 a day. Matt (my oldest) had just had a wicked stomach flu. I had lovingly cared for him and enjoyed it because he's my boy and he's almost 20 and will be leaving on an LDS mission soon, it's my time to shine as a mom, as I probably won't have these hey-mom-I'm-sick moments any longer:)

I also started Keto eating that day--which has been proven to aid anti-inflammatory diets which help those with auto-immune diseases. By that night I was violently ill with the WORST stomach flu of my mortal life. I'm still shuttering when I think about the Keto food that I saw twice.

As evidenced in my blog, y'all know I do a ton to stay healthy. Consequently, I rarely get sick, but when I do? It's bad.

This was bad. I won't give you the details but I lost about 10 lbs. in 3 days, crawled up my stairs, spent time lying on the floor. Justin and the kids were good to help, but it knocked me out. It lasted a week.

Home away from home...
testing at the hospital.

My neurologist said to pull off the full dose of Tec because it can cause stomach problems as your body adjusts.

Weeks 3-4: I was weak and started having massive fatigue and joint pain...and nightly fevers. What the ?? Yes, I was tested for COVID--it's not that. I just got bloodwork last week that showed all sorts of weirdness with my liver numbers, etc. I'm worried.

This is the longest I've gone in almost 4 years without daily walks/hikes. It's throwing me off. The fatigue is so intense I can barely get around.

I'll talk to my neurologist on Monday. The Tec site says the initial side effects are rough (including possible hair loss--oh please no, I cannot lose more hair!) but if you stick with it, they'll go away and this drug is supposed to have great rates of success.

However, I'll start teaching again, soon--in a mask to try to protect myself. It's a new school, new kids, new curriculum. It's a lot.

I've been fighting discouragement. Depression is still at bay, thank the good Lord, which is a miracle to me in light of immense family relationship stress--which has reached crisis level with one child.

I didn't realize how very well I function with MS, until I suddenly am not.

I took my morning hour long hikes/walks for granted.

Finding turtles during days when I had more energy.
I'll get there again. Side note: record high of 9 turtle sightings
this summer!! They are my spirit animal:) 

I miss having energy to work out, come home and clean, run errands, parent/wife, do lesson prep, cook food, etc. That's a normal day for me.

I haven't had one of those days since June.

MS is a thing. It's not crippling and it doesn't stop me, but it has this month.

I know, I know this is small potatoes right now AND it could be 10x worse in many different ways AND it's happening in summer not mid school year. Thankful for that!

I've been reaching out to other Tec patients and reading more about how your body can adjust and, unless my liver function or white blood cell counts plummet, this all might pass. I'm just hoping it's soon.

I want to just maverick-it and go off medicine entirely. However, because the numbness came rushing back, I feel like I'm holding back a tide and it feels too risky to just try it without right now. I haven't been stable long enough.

I'm humbled. I'm choosing to have faith and not be scared about when this will pass, what school will be like, will I get COVID because I'm teaching??

I'm praying--a lot.

I'm not beating myself up for not getting done as much as I'd like to or dropping the ball or not being as involved mom as I normally am. I'm not beating myself up for weight either. Body image issues as well as a need to eat healthy is an ongoing thing for me and I'm letting go of the worry about "am I gaining or not?" right now there are things bigger than a number on a scale.

I'm appreciating the little things and enjoying what I did do that day.

I'm reminding myself that this will pass and this current condition will not be my forever.

95% of navigating life with an illness that can disrupt plans and throw you on a dime is attitude.

I've been thinking of the scripture story of the woman with an issue of blood. She touched the Savior's robe and was healed. I feel her so much. I'd chase Him down, crawl after Him...anything to have this gone and for Him to heal my child too. I've got so much faith man, so much. But, it takes faith to not be healed. It takes faith to trust God to show me one step at a time what I should do. It takes faith to trust that this is a learning experience and that this will pass. It takes faith to trust that I don't have all the answers and that this double whammy with one of my kids and my health will indeed resolve and pass.

So, still here, still me, still striving.
I'll post an update soon.
Thanks for reading and God bless.

Been hiking a lot with my mom, which I treasure. I have MS, she's had
multiple knee/back surgeries, so I'm super proud of what we've done
this summer. This was my favorite hike with her: Aspiration Trail.


How I love my desert home.
Looking forward to seeing beautiful mornings again soon.

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MS in the Time of Corona & Current Status

Balancing Energy: Emotional

With MS, balancing your energy is a thing.

Balancing energy involves the emotional, cognitive and physical. I'm sharing what I've learned to help not only my MS peeps, but anyone who is searching for balance in their lives.

I kind of have a couple factors working against me. Number one, I'm a Giver (or Protagonist) personality (according to the Carl Jung/Meyers-Briggs 16 personality test). If you haven't taken this, you totally should--it's quite accurate. Basically, I love people and love to make them happy, even at my own expense.

Therapy has helped me check my people-pleasing ways and learn how to say no. This has become crucial in the whole balanced life idea, but is something I have not mastered...yet! Another is that I've learned that if I have a busy day, I've got to have a quiet evening or vice versa. I can't go on full speed all day like I used to.

My kids know there is "tired" and "MS-tired". Tired is feeling a little wiped out after a busy day, like a normal-person feeling. MS-tired is bone-melting, heavy fatigue...like I might collapse on someone. This leads to time on the couch or in bed, which is irritating. Part of managing this disease is paying close attention to how I feel and knowing when to push and when to pull back.

What Does Emotional Balance Look Like For Me?  I know that I am a people person, but alone time is critical so I can regroup. I am a teacher and an involved mother. I'm around people all the time. I do enjoy it, but crave alone time each day. I have a life where I have to be "on" frequently, but it's draining. Whether it's a long walk in the early morning or even commute time in my car; I've got to have it or I can't center.

I've also learned that some people drain me, don't effect me (neutral) or boost my energy. I don't know what it is, but some personalities and people suck out my energy. It's usually people who are more negative, needy, demanding or dramatic. I will find ways to limit my time with the people and rarely confront them...confrontation takes a lot out of me too.

Most people in my life are neutral, balancing really. These are most family, friends and students. My energy is neither drained or added to being around them. A few special family members and close friends add to my energy, which I'm forever grateful for. I've found that I get an energy boost from teaching (unless it's really direct-instruction-intensive) and from deep or fun conversations. Although I'm uncomfortable with it sometimes, but when others help me in any way, it adds. My emotional self craves those types of interactions.

Meditation has helped me emotionally. I've gone through some hard things which led to anxiety, depression and inner tumult that was relentless. My therapist recommended Headspace, which is a meditation app I love!

Reading recommended books to help me feel more connected to myself also helped...a lot.
My top picks:

• "Daring Greatly" by Brene Brown (any of her books are on point)
• "The Assertiveness Guide for Women" by Dr. Julie Hanks (dynamite)
•  "Self-Compassion" by Kristin Neff (transformative), 
• "Adult Children of Emotionally Immature Parents" by Lindsay Gibson (my parents are cool, but the book helped me A LOT with the emotionally immature adults in my life).

Prayer: I've already discussed that I'm of the LDS faith and a believer in Christ. My relationship with God and my Savior is the most important thing to me. I'm lost without the peace and direction they bring to me. Making time to pray each day (whether I'm at home, driving or hiking) makes ALL the difference to me in my day and helps me cope and balance. This is one of my favorite pictures of the Savior, because it's how I feel pretty often. Drowning in something and desperately grasping for help.

Exercise: I've got to move every day--no matter what. Yes, it helps physically (which I'll explain in another post), but it clears my head and lifts my spirit. Moving for me looks like walks in the early morning, hikes, biking or swimming.

I got tired (not MS-tired, just tired-of-writing) and threw these on a wordle to show what balance looks like for me. It's good for the MS, but mostly it's good for my soul. I figured I've got to master this since I'll have a lifetime of dealing with the disease...no time to start like the present! Happy balancing to one and all!

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Balancing Energy: Emotional