4 years of MS, Neuro Rehab and Acceptance

This is long past due, but here we go!

November 30th marked 4 years of MS. My annual MRI's showed zero progression--which is a blessing! I'll take that!

I've been on Tecfidera since July, and after a hellish start, the medication seems to be working and my MS symptoms are minimal. Unless symptoms surge, I'm on twice a year visits and annual MRI's.

However, I had fallen a few times this Fall...on hikes, going up stairs, in the hall of my school, lol--mercifully no one saw that one! Falls are serious with MS because they can indicate progression. When I saw Kelsie, my Neuro PA, she said that because my scans were clear, it might just be an MS symptom and I could benefit from Neuro Rehab to help the PT's there pinpoint the issues and give me tools to walk better and stave off further problems.

On Neuro Rehab

Enter Anrqiue and Nanette--I couldn't have asked for two more kind, understanding, rock star physical therapists. I did about 6 weeks in NR from Jan-Feb. where I gained serious tools for the future.

They work with MS patients and the level of their understanding was astounding. Because I look normal, appear chipper and healthy, most people don't get the struggle, but they did. It wasn't my walking gait that was off, it's managing fatigue. MS fatigue is a beast. Evidently fatigue is also an RA thing, so I have a double-whammy. When I get tired, I get sloppy and I fall. From changing how I hike (the Anrique 15/5 method is my new go-to--ask me if you're curious), to how I walk, to how I stretch--I've made some big changes that are helping me. 

It was really humbling to be there. Neuro Rehab is where neurological patients are sent, so whether it's stroke recovery, TBI or life-long disability, that's where they go. Oftentimes I was the youngest and/or the most able-bodied there. I saw patients with disabilities do the most amazing things, I saw stroke victims learn to walk again. It made me profoundly grateful and in awe of what the human spirit can accomplish. They inspired me. Being able to walk is a gift that I never want to take for granted again.

On Acceptance

I'm confronting some larger issues. I feel a lot of shame and embarrassment because of MS and now, RA. I don't like being the sick one; I don't like having to walk slower (I used to be the fastest walker/talker); I don't like taking the elevator; I don't like people looking at me like I talk about having a disease for sympathy or attention. It's been a lot of work to accept that I have a disease that isn't going away. In fact, it might progress and I do have symptoms to manage every day. It never, ever stops. 

But, it's ok.

It's ok that I adjust as needed. It's ok if no one understands. It's ok to slow down and take care of myself. With the recent diagnosis of RA (see below) and major, major challenges on the home front with my kids, I feel like my dreams have shifted a bit. My ambition is tempered right now, and that's ok too. I think this is one of the most difficult seasons of my life, but I remind myself that this too shall pass and I'm going to be ok.

Yes, I'm still teaching high school and it's my calm in the storm. It's the one place where I feel less stress, fairly competent, and pretty happy. I get asked if I'll retire on disability. Nope:) I feel my health is not negatively affecting me at work and teaching gives me purpose. It's my life-calling and I really love it. 

On RA (sigh)

Speaking of ok, I'm now a triple threat: MS, Hashimoto's Thyroid and now a diagnosis of Rheumatoid Arthritis (RA).

There's not an eye roll long enough to sum up my feelings here.

However, I also feel incredible relief because a lot of things now make sense. 4 years ago the intense joint pain/fever/fatigue/nausea that would come and go without pattern was what I deemed an MS "flare". My neurologist was a little iffy about that and said that join pain usually isn't an MS thing because it's not neurological. This led me on a path of trying to figure it out.

The joint pain sickness is what keeps me home, why I cancel events, why I feel sick, why I might have to spend time in bed on vacation (I hate that one), and continues to give me a lot of grief.

My amazing internist and I have tried to figure this out. Based on join pain, we fixed my thyroid, balanced my hormones, but still the pain and symptoms persisted.

Dr. Paradela looked at in October and said, "We've got to send you to someone smarter than me." Lol, is there anyone smarter? Doubtful.

She sent me to Dr. Pickrell, Rheumatologist, from SLC who visits St. George. Paradela assured me he's the best in the business and would figure this out. 

Sure enough, mercifully a week later, I was sitting in front of Dr. Paul Pickrell. He was sharp, funny and talked a mile a minute--I loved it. As I started to tell him my symptoms (which are so weird and sporadic that I felt a little crazy) he just nodded his head and rapidly felt the joints on my hands and feet.

He confidently told me I met all the markers (intermittent joint pain accompanied by fever, severe flu-like symptoms, fatigue) for a rare form of RA called Palindrome Rheumatism. It tends to be found in MS patients with Hashimoto's thyroid. Sigh.

Dr. P ordered bloodwork and hand ultrasounds, but said I might look good on paper (of course I do, ha ha) and that sometimes the other conditions will mask PR. He said he enjoyed the validation, but regardless, I'd be diagnosed with this and treated accordingly--immediately. 

He smiled (at least I'm assuming that what was happening under the mask) and said it is totally treatable with a medication with little side effect, will give me energy, mental clarity, take away the joint pain and even throw in some weight loss. Oh, and it's an anti-malaria in case I want to expand my travel options.

I thought to myself..."is this meth?"

Then Dr. P went off about Trump letting these secret out on this wonder-drug and if everyone used it we'd run out. It's the drug that Trump pushed to treat Covid.

Yep, it's hydroxychloroquine.

Dr. P then went off on Trump and I won't lie, I loved every minute of it and nodded my head in agreement. I might have given an "amen." Y'all know I am not a fan of Trump.

Now, here's where it gets interesting. Dr. P told me his weekend gig was with Pfizer and he's a medical supervisor for the Covid vaccine trials--what, what? He told me he was on the phone with Dr. Fauci and they were having some disagreements. I was just laughing at this point. Pickrell did tell me that in trials, auto-immune disease patients had massive relapses on the vaccine, so ponder that one. 

I will not be taking the vaccine.

You've heard of the 6 Degrees of Separation from Kevin Bacon? Well, now I'm 2 degrees from Fauci. Very exciting.

Dr. P looked me in the eye and said that the 2nd week of February will be the best week of my life.

Huh? My 24th anniversary? I mean...

Evidently wonder drug takes a couple months to build up in your system and reprogram the troops.

I didn't freak out. It wasn't full-on RA, just a weird subset that doesn't cause damage and the medication would cure it. Yay!

December...my diagnostic appointment was cancelled. 

January...it was cancelled again. In a strange turn of events, Dr. P left SG to work fulltime for Pfizer and I talked to a new doctor.

I found out that Dr. P jumped the gun. I don't have PR, I really do have full-on Rheumatoid Arthritis. I'm negative factor, which is good-ish? It's another AI that doesn't leave, must be managed and can cause permanent joint damage, heart/lung issues, etc.

Because I had set it my head that this wasn't a big deal, getting a full diagnosis was shocking--not MS shocking, but upsetting..

I had a flare in January that put me down for 2 weeks. I could barely walk into my school in the mornings, had to take a couple of days off and spent that time completely dropping the ball in every aspect of my life until it passed. I was in more pain with more severe nausea than I'd ever had. I started to get very worried.

Luckily it passed. It's February 20th now and I haven't had pain for almost a month. I'm assuming the hydro-meth is doing it's job.

Current Status

Yes, the cold bothers me considerably. The desert-cold feels like a sharp knife. Because of MS, I can't regulate my body temperature and warm-up & the RA allows cold to seep into my joints and it's unpleasant. Yes, I realize I'm literally in the warmest place in America, but it's still hard for me. Heat is way easier to manage. Yes, my end-game is still to retire to Hawaii.

For the record, the second week of February was great. Justin and I celebrated in San Diego. He took me to the sea, it was lovely. We ate vegan food, went to all our favorite beaches and I didn't hurt or get sick...not even once!

What I'm worried about is having 3 diseases and I'm worried that maybe the immuno-suppression drug I'm on for MS is protecting my CNS but then pushing my immune system to attack my joints. What happens when my immune system is reprogrammed away from joints? Will it attack something else?

I'm researching and praying about perhaps stopping medicine to see if it can be managed otherwise. 

I've always been an Eastern-medicine lovin' kinda gal and I am not thrilled with being on more than one medication that is doing who-knows-what inside of me. 

I'm frustrated because I can't seem to lose weight either. Sheesh, with having so many food restrictions, I should at least be thinner, but no luck. However, the more pressing concern is feeling well and praying the RA tsunami doesn't return.

So, life goes on. My focus is on researching the next step, connecting with God to guide me and trying to be the best parent I can be as I support my kids with some very difficult issues.

If you made it to the end of this, thank you. Thank you for being my friend (some are family too) and supporting me. Thanks for seeing me despite the acronyms and believing in me. I appreciate you.

I'll continue on, as you are, and continue to have faith that things will work out and appreciate the small victories.

God bless:) 

I've gotta give a shout-out to my 2nd cousin, Katrina. We are a week apart, both teachers and both have MS--crazy, huh! Katrina was diagnosed earlier this year and handled it like a rock star. She came down in January and visited me when I was so, so sick from an RA flare. I treasure her friendship and support!!

MS cousins and friends:) 

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4 years of MS, Neuro Rehab and Acceptance

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