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

New MRI's and A Day in the Life...

Ok, this is all launching later than expected, but hey; with MS you learn plans change...frequently. Just pulling out of a ten week long infection (sinus and bronchial) that took 4 antibiotics, 3 doctors and a whole lot of prayer to finally cure. I am finally feeling normal!! The last antibiotic, Levaquin, was a heavy hitter where I was dealing with extreme fatigue and full-day nausea...like morning sickness without the cute baby in the end. It made me so appreciative and so grateful for the good days.

The problem is increased numbness. A visit with my favorite neurologist led to a fact-finding mission. She knows I'm a girl who likes a plan, so a plan we made. I will get new MRI's on Monday, May 21st (to kick off my birthday week, ha ha) to see if the MS is active again or if the numbness is a side-effect from so many antibiotics and a prolonged infection. Infection is a big NO if you have MS because it messes with your already less-than-stellar immune system. I was so shocked to get "normal-person sick" because I'd been perfectly healthy for over a year. I thought surely my vitamins and healthy eating would protect me forever, but that wasn't the case. Following the MRI scans will be a delightful nerve conduction test--I'm not even commenting on this one yet.

MRIs are still so weird and unpleasant for me. Wish me luck tomorrow!

So, in case you are wondering, here is what a day in the life with my MS looks like. Remember that MS is different for everyone and changes throughout your lifetime. Here is life today...

I wake-up early throughout the school year. In fall and spring, when it's not as cold, I'm up at 5am to walk. Right now, I'm rolling out of bed closer to 6am because of the last couple months.

In the summer I'm up around 7am-8am and leave for an hour or so hike or bike ride. I LOVE IT! I can't regulate my body temperature, so once the temperature is around 85, I cannot be exercising in it. I'm fine to run errands, walk around until about 95 then I have to be inside. It's a pain, but I've learned heat makes me numb, stupid (cognitive fog), sluggish and I can't cool down. Likewise, cold is an issue. Cold, for me, is intense pain, shaking, can't warm up. Stupid MS. Obviously I need to live somewhere with a constant 75 degrees. Hawaii anyone?

Alas, I digress--back to mornings. I'm sore, a little stiff, but limber-up pretty quickly. I pray, stretch out my neck and move my feet around a lot to make sure I have sensation before I get up. I mean, I did have a good 6 weeks without feeling from my calves down back in 2016, so you can't blame a sista for checking. I give thanks I can walk--like for real, I don't take it for granted. I have a lot of body awareness and do a quick scan to make sure everything is normal.

This matters because MS symptoms come and go--daily, even hourly. However, if a new symptoms stays for 48 hrs, you might be looking at a relapse and that's a big deal.

Let's be real, I was kinda weird before. Now I just have a fancy title to go along with it!

I do my business, get ready for school, wake the kids and make a morning smoothie. Right now I'm into Dr. Axe's Bone Broth Keto Chocolate Protein Powder with almond milk, spinach and ice. Weird, but I dig it. Right now I drink it on the way to work while Em drives me (she has her learner's permit and I have found I'm cool with being the one to be shuttled around).

Teaching. I'm so in love with what I do, it's ridiculous. I just have to pace myself. If I have a busy teaching day (physically or emotionally), I'll need to have a quiet evening and vice versa. I feel good when I move, so I do try to move around as much as I can when I teach.

On cooler days, I immediately walk when I get home. In not-so-cool-times, I try to walk in the evening. I also do weights/posture workouts every other day. One day, the pool in my backyard will be finished and you'll find me swimming each day too. I also try to stretch before bed.

I've learned I have to have time to decompress whether it's a walk, reading or praying. When I get home each day, I'm mom and a busy mom. I'm shuttling kids, being involved with them, cooking meals (although my kids are great to pitch in here), helping them with homework, etc. They just know if Mom is tired, she needs to sit for a bit. Self-care is a thing for me.

Every other night, I pull out my auto inject and do a shot. I put a warm towel on the injection site to heat my skin (thighs, hips or tummy). I prep the shot then. Next, I do the injection (slight sting), wait about ten seconds and slowly pull out the needle and stick an ice bag on it. Nate usually clips the needle and I head to bed. More on my Copaxone routine to come.

No cure, but I can't give up. Still me...just me with a weird MS thing:)

Do I think about having MS every day? Yes, every day, no exception. It took me a good year to accept and embrace it all and I have battled some depression along with way.

What does eating look like? No more emotional eating. Everything must be planned, I rarely eat on the fly--I just can't. I plan meals in advance and use FitnessPal when tracking carbs. See "My Treatment Plan" for all the exciting details.

What are flares vs. relapses? Flares are like a brief surge in symptoms. I have one around every 3 months. I don't know why. It starts with painful aches in my hands, then I have full body joint pain and usually end up in bed. For me, a flare feels like intense flu and it's quite painful. I can't eat much and have to be down. One day is usually horrible, then I can ride it out. Flares last about a week or so for me. They are a stark reminder of what my reality could be. They are scary and humbling. I am trying to figure it out, but right now, I just don't know.

A relapse is a new symptom or increased symptom that stays longer than two days. It can be a sign your MS is active. Relapse prevention is what my life centers around. I'm hoping my MRI tomorrow shows that I have not relapsed.

A basic overview. I'm grateful that I don't deal with most of these. Some I have had in the past (muscle spasms, itching, etc) but my nutritional changes seemed to get rid of them.

What are my daily symptoms? 

• Numbness that comes and goes. It courses up and down my legs--especially when I sit. It feels like electricity or little bugs crawling. It's annoying, but not painful. If I do too much without downtime. Sometimes I feel like in my hands and on my face. Not often, but when I do, it freaks me out.
• Balance--I am not too tipsy, I have just found I have to pay more attention when I am walking. I can't really do treadmills, it's the only thing that throws my balance. I'm trying to run a little, but it throws me off too. I can't really whip my head around quickly or I feel that as well.
• Fatigue--I walk a tightrope (go ahead, cue the "Greatest Showman" song). It's a very careful balance of diet, vitamins/supplements, water, exercise, energy to feel good most days. Some days I have to lay down, some days I don't walk up stairs, some days I don't have it in me to go out. Most days I feel alright though, which I'm grateful for. Frankly, the cognitive balance to do it all is exhausting sometimes, but I can balance and that's a gift.
• Bowel/Bladder--I'll spare you the deats here, but it's a balance here as well. Having a BM is a big deal and I can't hold it like I used to:) Plus, I'm officially "in my forties" (ugh) at the end of the week...so, yeah.
• Temperature Regulation--if there was a "Most Annoying Symptom Award" it would be this one. As I explained above, I basically can't regulate myself so any temperature change, to me, feels gigantic. This also means I have to plan my outside time carefully and I'm an outdoors kinda girl, so it cramps my style. I have found that wearing tank tops (gasp) when I am active outside as well as cooling rags help with the heat. Don't judge me. In the cold, I'll have a crazy amount of layers on, don't ask if I'm pregnant. 
• I also hate it when I say I'm hot or cold and people respond "well, it's not"...well, it is to me. As my neurologist said..."it's all in your head." This means that my body can't logically tell if I'm really hot or cold or not--it just responds. It's weird, annoying, but mercifully manageable. 
• Eye Pain-now, I'm lucky because I do not have any optic nerve issues. However, if I squint, it kills my eyes. I also can't use my preferential vision for more than a second as that hurts too. Sadly, I've had to put my photography hobby on hold because of the eye pain. My last couple photos shoots were not great and the pain after was intense. So, for now, it's just my iPhone and I:) Again, no blindness or vision loss, so thumbs-up on this one! 
• Emotional: I do deal with situational depression and anxiety that comes and goes. It's usually not too intense and only the people closet to me can see it. So far, mindfulness, mindset, and my faith help me through this part of it. If I seem off, know that it's never directed at a person--it's something inside of me. 

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New MRI's and A Day in the Life...