Time for an MS update. Last Friday I had my first Briumvi infusion. In my mind, I would get it and start feeling better immediately. I was wrong. I met with my neurologist today and learned that what I received was only 1/3 of the first round.

The first infusion is the smallest portion, allowing them to take it slow and see how my body responds. The next one, in a couple of weeks, will be a higher dose. That does make me nervous, but I can do it. In a strange way, I feel like natural birth prepared me for this season. When I was pregnant with Z, I devoured pregnancy books. I wanted to learn everything there was to know about having a natural birth. It became a passion. I learned how to prepare, relax, and push through (no pun intended). While infusion treatment for MS isn’t the same at all, many of the tools I gained 18 years ago still apply. I’ve been doing my best to research and prepare. I know how to breathe, how to calm my body, and most importantly, I know I can do hard things. This is temporary suffering, and I believe it will be worth it in the long run.

The first infusion itself went smoothly. I knew I had people praying and fasting around the clock for me, and I truly felt the presence of the Holy Spirit in the room. I also had an incredible medical team caring for me, and J was right by my side. I did experience the flu-like symptoms they warn about, but overall it was calm and uneventful.

Saturday was different. I woke up feeling like I’d been hit by a train. This was me after getting out of bed.

It felt just like the flu except just a warmth and no fever. I was managing okay until that evening, when the vertigo returned. I took a children’s chewable Dramamine, something I’ve taken before, but this time it immediately started burning my tongue. Panic set in as I double-checked the packaging and realized my tongue was swelling and becoming numb. I called the after-hours UC Health line, chugged water, and spoke with several nurses and a doctor who monitored me over the phone. Slowly, the irritation went down.

There’s no clear explanation for why I reacted that way to a mild medication I’ve used in the past. Because Briumvi is an anti-CD20 monoclonal antibody that depletes B cells, it shifts immune balance. This can potentially disrupt regulation and cause exaggerated hypersensitivity reactions to emerge. My med team will keep a close on it as I receive the next infusion. Thankfully it’s just a mild reaction and not an allergic one.

I tried to rally the next day and celebrate Christmas with my side of the family, but it wasn’t easy. I was juggling a variety of symptoms and slept in the guest room some of the time. I did love seeing my family, watching kids play, and even the snowfall helped lift my spirits.

By Sunday, I stayed home from church but was grateful I could watch the message, baptisms, and Z playing keys on the livestream. Later, we decided to watch a Christmas movie while wrapping presents.

I felt guilty that I couldn’t help wrap so J handed me the gift tags and asked if I could write the names. It was a small job, but I was just happy to contribute something.

As the movie played, I noticed the closed captions were suddenly hard to read. A blurry spot appeared. I glanced around, trying to decide if it was the TV or my eyes. It was my eyes. I tried to ignore it, but the blur turned into something that looked like pixelated TV static.

We paused the movie, and I tried to explain what I was seeing. Z was convinced I was escaping the Matrix, which honestly sounded pretty cool, but I decided it was time to call the after-hours doctor again.

While I waited for the call back, the “blind spot” grew larger. It was in both eyes. I was terrified and in tears. What I saw looked like a kaleidoscope in a crescent shape filled with bright, unnatural zigzag lights—taking up almost half of my vision.

When I finally spoke with the doctor, I struggled to describe it, but she immediately knew what was happening. I wasn’t having a reaction to the infusion, and I wasn’t going blind. I was experiencing a migraine aura. I told her I didn’t even have a headache, but she explained that an aura can occur with or without pain.

After about 40 minutes, it passed. Relief washed over me. I had to break the news to Z that it wasn’t, in fact, the Matrix. Still, the kids were excited to learn I had an “aura”—which, believe it or not, is the actual medical term. A visual aura is a temporary sensory disturbance that can include flashing lights, blind spots, or zigzag lines that move across your vision. It’s caused by a wave of electrical activity in the brain’s visual cortex and typically lasts less than an hour. It can anoccur without a headache, known as an acephalgic migraine. Wow, I am learning so many new medical terms and phenomena. I think I’m good now. No more please.

My next infusion is in ten days. I have more to share, but right now, I need a nap. I love you all. Thank you for walking with me through this, and please keep those prayers coming.

Today is the day of my first infusion. I am learning a lot about DMTs (disease modifying treatment) options, and I still have so much to learn. I may look back at this post and laugh at my description of the treatment plan and how little I knew. That’s okay! You have to start somewhere.

I’ll never forget the appointment where the neurologist showed me the image of my spine and walked me through the game plan. It was hard to hear because if you know me, you know I am a little bit crunchy (note the article in the sidebar).

I still eat processed, non-organic foods, but I lean towards hippie on the spectrum. So I’ve always had a very good relationship with my immune system. I took care of it and trusted it. I am the type to go outside barefoot, give birth in my own bathtub (or wherever, naturally, but that’s another story). I got chicken pox the old-fashioned way, and according to my recent bloodwork the antibodies from that are still doing their thing. I got Covid naturally in 2020 and haven’t had it since. Yes, I do believe in vaccines, medicine, good hygiene, and the reality of bad bacteria. But I’ve never really been afraid of germs. For 43 years I’ve trusted my immune system and nourished it.

Now I’m going to go into a sports analogy, which is comical because I am not, nor have I ever been, an athlete! Still, the way I see it is I’ve been playing basketball with my immune system on my team. I am confident that we could do a pickup game on the street at any moment and my immune system and I will crush it. Whatever I throw at my healthy immune system, it slam dunks. I’m so proud.

So then when I go to the neurologist and she tells me my immune system is turning on me and actually playing for the opposing team, it hurts my feelings. We’ve worked so well together! I trusted them! My neurologist has a game plan though. She says we need to bench my B-cells. We watched the tapes (looked at the imaging of my brain and spine) and she’s right. We’ve been on a losing streak. But then she showed me the roster (the bloodwork), and the team looks healthy, but they just don’t have a great strategy. It’s not teamwork—it’s a catastrophe. So she says we are going to bench the B-cells. The rest of my immune system will still be in the game and can win, but we just have to get the B-cells to stop scoring points for the other team (attacking my central nervous system) . At first I felt uneasy about letting go of this teammate, but in it made sense. So I agreed, and I’m ready to start winning again.

Now back to non-sports terms, the treatment I start today is called Briumvi. It’s an immune-suppressing drug with the highest efficacy. It’s powerful. So powerful that we have to be super careful so that I don’t get hurt. We will start slowly and monitor everything. I will have regular bloodwork and MRIs to make sure that things are going the direction we want. I know I have a mighty army of prayer warriors in my corner, and I am so thankful for that. It means everything to me because this is scary. But God is on my side.

My neurologist showed me my B-cell lab work, and it looks great! My numbers look strong and healthy. She pointed to the CD19/CD20 rows (I think) and then told me we are going to take all those specific b-cells down to zero. ZERO!

Ugh. It’s a very targeted strategy that will still allow me to function but prevent future flare-ups from wreaking havoc on my central nervous system. I will not get into all the science of it, but it’s actually pretty fascinating.

I did get a second opinion from a friend’s husband who is a neurologist that I completely trust. He looked at my chart and agreed with the treatment choice. He was very optimistic. I am also diving into natural remedies and fighting this with a healthy lifestyle.

So that’s the game plan for now. Thank you so much for being the world’s best cheerleaders. Honestly, I could not in a million years dream of a better support system. I picture all of you hoisting me in the air in victory as we beat this thing (metaphorically, of course).

I have a friend whom I haven’t known for very long, but she is so friendly, so loving, and so full of the joy of the Lord that she will make you think she is your long-lost aunt. When I hear her voice shout “Natalie!” from across the church lobby, I know it’s her before I even see her. She has a distinct, very Italian accent—it’s beautiful, and so is she. She regularly lets me know she is praying for me and my family, blessing me with scriptures and encouragement she sends through text.

Yesterday, while at a church Christmas party, I heard “Nat-a-lee,” and there was Maria’s smiling face coming over to greet me. She said, “I had a dream. I’m not usually one to have dreams, but I had this dream about you.” As she stepped closer, I could tell this wasn’t just any old dream, she had something significant to share.

She said, “I saw you in my dream. You were wearing a BEAUTIFUL dress.” She stretched the word beautiful out, like the dress itself was twirling and floating in the air. She couldn’t fully describe it, but she began using her hands to show how stunning the dress was.

Then she said, “And you were…”
She paused. I waited.

“You,” she said, and her hands fell to her sides.

I started to tear up as she repeated the simplicity of the dream. “I saw you in my dream wearing a beautiful dress, and you were you. That’s all I can say.”

My eyes immediately filled with tears, and I felt the love of the Father embrace me. I can’t even express how much this meant to me. As simple as it was, it was the most meaningful and impactful prophetic word I have ever received, and my friend didn’t even claim it was prophetic, but it was.

You see, I never knew either of my grandmothers. They both passed away before I was born, but I had a family friend, Heidi Lewiston, whom I referred to as Granny.

She was a warm, encouraging, wise presence in my life. She passed away in 2017.  

Shortly before that I interviewed her for my Inspiring Mom series and shared her testimony online. Another time I featured Granny on my blog was in a 2015 essay titled “Pretty Dresses,” where I shared about the significance of a pretty dress for a little girl. I adore this photo my brother took of my niece.

Elle in her baby dedication dress and my wedding dress in the background.

I wrote:
“One day, a lady from my Texas church whom I lovingly refer to as Granny told me, ‘When I see a pretty dress, I think of you.’ That was years ago, before I had children, and I can’t think of a compliment that has topped it since.”

So when my Italian Auntie Maria told me she had a dream that I was wearing a beautiful dress, it meant something. I hardly ever wear dresses. She has probably seen me in a dress maybe once. Maybe. Her retelling of the dream reminded me of Granny, and it was deeply comforting.

Then, when Maria said, “You were… YOU,” I knew that was from the Lord too.

I’ve shared journal entries from this dark season of my life, when MS flare-ups robbed me of so much—including feeling like myself. I longed to feel like me again and celebrated every small glimpse of myself that returned. Here are a few excerpts:

May 11, 2023
The morning was hard after shaking last night, but around 10:00 I started feeling like myself again. PTL.

May 24, 2023
Today was a good day. I took a 30-minute walk. I felt more like myself.

May 29, 2023
I pray that I will be one hundred percent back to myself in God’s timing.

June 14, 2023
Almost the whole day (99%) I felt like myself. just me thinking about regular stuff and feeling normal. Even if I’m stressed, sad, or mad, I don’t care as long as I’m not feeling shaky and out of it. I just want to feel like myself again. I know one good day means nothing in terms of what I’m dealing with, but I’ll take it.

July 5, 2023
It’s been 24 hours of feeling like myself!

July 10, 2023
Today was really, really great. I feel like myself.

When I have had MS flare-ups before I knew that’s what they were including now that I do, I just emphatically know this isn’t me. I want to feel like me again.

I shared this story on Facebook, but I’ll post it here too.

I received some discouraging MRI results on November 9th. It was a Sunday morning. I called my mom, who was in Sunday school. The teacher, my friend Audrey Jett, put me on speakerphone, and all the ladies prayed for me just minutes after I received the report.

The photo that showed up on her phone while they were praying was one of me wide-eyed and gleeful.

I told the ladies this is the joy and energy I pray I will have again.

I asked ChatGPT to describe the emotion in that photo. It said “the emotion is pure, unfiltered joy. It feels playful with a sense of excitement and delight—almost childlike wonder—paired with confidence and warmth. The expression feels joyful, welcoming, and infectious.”

Well, hallelujah!
That is my prayer.

When Maria said, “You were you,” that’s all I needed to confirm that God is doing it. You will be YOU. I will feel like myself again.

What a wonderful dream.

Warning: This post is a long one, and it’s extremely vulnerable. I am processing a lot right now.

It’s been a month since I was diagnosed with MS. When I received that diagnosis, my neurologist explained that I had both old and new lesions going back approximately five years. Since then, many people have asked me if I can see signs looking back—and the answer is a resounding YES.

I have what is called Relapsing-Remitting Multiple Sclerosis (RRMS). This form of MS involves flare-ups or a relapse of symptoms, followed by periods of partial or complete recovery (remission). Before I knew it was MS, I called these flare-ups “episodes”.

Here is some information I found on BrighamandWomen’s.org-

Relapses—often referred to as “MS flare-ups”—typically come on quickly, developing over a few hours or days, and last a few weeks. Symptoms may last as long as two months.

The relapses I describe in the following journal entries lasted from April 2023 through August 2023. I use an app called Daylio to track my mood and health, and I also write a very short journal entry there each day. Last night, I went back through my app and copied every entry related to these mysterious episodes that I now know were MS flare-ups.

Altogether, the entries totaled over 3,000 words—pages and pages of documentation—so I’ve done my best to narrow them down. It’s only a small fraction of what I journaled, but it gives a glimpse into my world with undiagnosed RRMS. I put the symptoms I was having in bold and the excuses I made to try to dismiss them in italics.

April 17

This journal entry is for yesterday at 2:50 pm through today at 12:30 (and maybe beyond). I had horrible episodes back-to-back of trembling and anxiety for 11 hours. It’s the worst thing I think I’ve ever experienced. I would do anything to get my old life back. I went to the ER, they think it’s supplements. I thought so too, but now I’m shaking again. Maybe I’m just cold. Anyway, this is so horrific I can’t even begin to explain how awful I feel.

April 21

1:02 pm I am having a full blown panic attack in the Dr office and I am mad again and feel defeated again. I told Jeremy and my mom I’m fine so now what!?!!! I’m clearly not fine but I want to be more than anything in the world!!!!

May 12

I do get some tingling in my legs, but it’s not happening now and it’s nothing major.

May 22

I had a great day! Everything was fine, but then I felt pressure in my ears, muscle tightness, and warmth like before. BOOO. It started about 30 minutes ago (around 8:30 pm), and I’m writing to distract myself and get through it.

Update 9:15 pm: I am still shaking. I have to pee a lot from drinking so much water. Maybe that’s stressing my body more than usual. I also have a weird taste in my mouth—this always happens during my episodes. 😣

9:56 pm: Thank the Lord, I appear to be coming down from the terrible sensation. Hopefully the worst is behind me.

I’m just writing it down to document but woke up at 12:00 am shaking. Gripped with that creepy crawly feeling. 😢 It makes me sad because I am on my medication. I am trembling and I feel nauseous . 

May 23

I had really really bad sleep. I was up until about 4:00 am weaving in and out of consciousness trembling. Always upper body not so much my legs.  Today was so hard because of my relapse or whatever you want I call it, so I’m really scared and on edge which perpetuates ANXIETY. Ugh. Viscous cycle.

May 27

I am very happy to report that today was a good day. I felt slightly tingly at times, but I’m not going to freak out about it.

June 5

Unfortunately, I did have some shaking last night. It was real and intense, but I was so tired and took melatonin, so it only lasted about ten minutes. That’s good news.

June 9

 I’m really thankful to be feeling like myself again. I am hardly thinking about my episodes or hormones at all.

Update- at about 9:00 pm at life group I was sitting at the table listening to my friend talk and I felt slightly warm and light headed. I was so uncertain about what was happening! My ears did the thing and I thought for sure I was going to have an episode. I don’t even like thinking about it because it made me scared and confused. I am documenting it though just in case there is any significance. Hopefully just a weird fluke that was really all in my head.

  Update 3:25 am unfortunately and I really hate admitting this but I had some weird feelings tonight so I’m not too surprised. I got ready for bed and then dealt with an anxiety attack when I went to bed. I feel a lot if trembling/tension in my neck right now. I’m sure I’m probably just overly tired. The blankets feel cold at first so I have a theory that that is a trigger.

July 2

It’s been 10 days since a true episode. I’ve shaken briefly here and there, but without the ear fullness or weird taste, so I don’t count those. I’m aiming for three weeks, that would be a record.

July 3

I think my old issue of ear fullness is back, which makes me a little dizzy. I was really not myself for a couple hours.

July 23

 I know I’ll be okay, but sometimes my brain gets foggy and I feel jittery or my breathing feels off. I hate that.

July 27

Tingly legs freaked me out, but overall it was a good day. I’m thankful I’m not as bad as I was in April.

August 6

Hands shaking. Body felt jittery.

August 8

I had regular stress feelings and body aches, but none of the weirdness I’ve had for the past five months. Praise God for this breakthrough. I would be so happy (and admittedly confused) if all the shaking and panic were finally behind me.

That was it. After August 8th, it was behind me for a couple of years (for the most part).

When I did my 2023 recap on Messy Mom, I mentioned that season and wrote:

“I still don’t even have a diagnosis, but I am thankful that whatever was causing shaking, anxiety, insomnia, and heart palpitations from April to August is gone now. Praise God!”

Arghhh. I hate reading that because I thought it was gone. I was actually in remission and living with undiagnosed MS.

I’m sharing this openly because I know there are people who have experienced the same thing. You rejoiced in healing, only to find yourself back in the same place again. I don’t have all the answers, AT ALL, but I know that God is good and never fails.

2 Corinthians 12:9–10 says:

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me”.

I felt I needed to share. Maybe it helps someone recognize the need for medical testing, or helps someone feel a little less alone, or gain a better understanding of what living with an autoimmune disease can look like.

Honestly after all I’ve been through I am truly grateful to finally have answers to what was causing all of those mysterious episodes. I am also thankful for a peace that passes understanding.

First off let me just say I am feeling a lot better than I was at this time last month!

However, to be transparent I want to document the disruption this disease has caused me over the past 5 weeks.  I want to be able to look back one day and see how far I’ve come. Here are the top ten things I have missed out on no thanks to MS.

1. One day to feed the world picture

We love participating in One Day to Feed the World. Every year we give to Convoy of Hope and I know it’s not about a photo op at all, but it’s something we enjoy promoting. It’s a worthy cause and we are all in it together as a family.  We all got new t-shirts on October 5th. I even got a photo of Elle and her friend that day.

However three short weeks later I went to church had a flare up so I couldn’t do a photo and I had to have Z drive me home. It was awful.

2. Volunteering at Child’s Hope International

I had volunteered to go with our kids’ ministry to pack meals for people in Eswatini with Elle, but I was unable to because of MS. My friend swooped in to take Elle so I am glad she was able to serve but it still makes me sad that I wasn’t there with her.

3. SJ’s special OVV banquet

This one really breaks my heart. I RSVPd to be apart of this special event for OVV. It’s been months in the making. SJ is helping spread the word about what OVV can do for kids with hearing loss.

They showed some really awesome videos of SJ at different stages of learning how to talk (I will have to share them on here sometime). I am thankful that my mom could take her and she kept me updated via text giving a full play by play all night.

4. Nate Bargatze 

 I already shared about missing this comedy show so I won’t go into all the details. I am very happy that my parents went and had a great time. Was I jealous? Totally! Was my heart full hearing all about my mom’s wonderful experience? Absolutely!

5. Halloween with the kids

We don’t even celebrate Halloween, but I am one of those christians that loves to see my kids dressed up and go be a light in the darkness. This was my first year to miss that and while I did manage to get some photos from friends of them dressed up I really missed getting to take my own photos.

Elle was a fairy princess, Ezie was the Hallow Knight, SJ and and her friends were Strawberry shortcake characters.

6. Sending Christmas cards (but hang on there is something in the works!) 

Typical healthy Natalie would already have Christmas cards in the mail by now. It’s my thing! At first it was looking like we wouldn’t get to send any at all this year, but we managed to pull something off and I am actually SUPER excited about it.

7. Job/side jobs

I’m throwing two in one here because I have had to take 13 sick days and counting at work. Before now I had never taken a sick day unless I had a doctor’s appointment and that was rare. I actually love my job and have missed it so much. I got the sweetest cards from my students though. They may not look like much to others but I know their hearts and they are meaningful to me.

I also love doing photography and thankfully I have managed to squeak out a couple shoots when I felt okay, but editing has gone much more slowly. I can’t spend as much time looking at a computer. My eyes get tired when I have to focus too much and some photo sessions I had to cancel altogether because I was physically unable to do them.

8. Decorating for Thanksgiving 

I did get to participate in Thanksgiving but usually I decorate, cook, bake, wear a cute apron—the whole June Clever thing. Here I am posing for previous Thanksgivings.

This year i did not cook, clean, or decorate. I just talked and ate more healthy than usual because I am hyper aware of inflammatory foods right now. I am still thankful that family time happened and that is what matters most.

9. 25th Anniversary

I did a whole blog post about this one. My big spine MRI was scheduled the night of our 25th anniversary. So while we really didn’t have any major plans anyway, we definitely had not planned for that. 

10. Elle’s birthday 

This was a big birthday for her. Not only was it her golden birthday (10 on the 10th) but double digits too. We had started party plans until MS disrupted all of that. She took it like a champ. Even though she didn’t have a party with her friends she got to go on a special date with her daddy.

As far as where things stand with my health now I have no significant updates. Insurance still hasn’t approved my treatment and so I don’t know when that will happen. I am doing my best to receive help from others and enjoy this Christmas season regardless of the obstacles. Christmas is about Jesus and Jesus said in Matthew 17:20 if you have faith as a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you. So I’m not worried about this mountain. I am going to celebrate my Savior’s birth no matter what!

I know it’s Thanksgiving, but I’m going to combine this occasion with our anniversary.

It’s been 25 years since we made the promise to “have and to hold, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish all the days of our lives.”

This month we’ve been face-to-face with the in sickness part as I’ve been diagnosed with Multiple Sclerosis. I’ve watched this man step up as a caregiver, literally walking with me, steadying me each step with his arm around me, holding me when I couldn’t carry my own weight.

When I saw my neurologist for the first time, she ordered an additional MRI and wanted it done immediately. I received the call while still in the office. The woman on the phone said they had an opening on November 4th at 9:00 p.m. and asked if that would work. I hesitated. My brain hadn’t had a chance to catch up with everything, and my first thought was—9:00 p.m.? Did I hear that right? Surely they wouldn’t start a two-hour MRI that late at night.
My second thought was—that’s my 25th wedding anniversary.

“Natalie— I think we need to take this.”
The urgency in her voice pulled me out of my daze.
“Oh yes. Right. Absolutely. Let’s take it,” I replied. We wanted the first available, and that was fine with me.

The date was set, and I was thankful. But as soon as I hung up, a nurse was calling me back for bloodwork. They were testing for everything, and they were going to need a lot of blood. All the stress had been building, and my body started trembling uncontrollably. I felt like I might pass out. The medical team was kind and doing what they could, but they had other patients to see and couldn’t draw blood in the state I was in. They offered to reschedule when I felt better. That wasn’t an option though. The doctor needed this bloodwork now.

“Can my husband come in?” I asked in desperation.

“Of course,” the nurse said. “Is he out in the waiting room?”

I nodded, and she sent someone to get him. When J walked in and saw the state I was in, we locked eyes and I saw the concern on his face. “Can you stay here with me and pray with me?” My shaky voice asked through tears. Of course he would. He held my hand, and my body began to settle down. The nurse started drawing blood and said, “He is your calm,” then smiled. “I love that. You just don’t see that kind of love anymore.”
I know how blessed I am.

So that Tuesday night, November 4th, J drove me to the radiology unit at UC Health. I slipped into a cold hospital gown and listened to the hum and clunk of the MRI while J waited outside the scanner room. A night that should have been candlelight and toasts became fluorescent lights and medical forms.

This wasn’t our first anniversary that was met with adversity. There was the year SJ had surgery and the covid year. This was the ‘in sickness’ we promised, and he lives it out without hesitation.

Since being diagnosed and dealing with flare-ups, J has bought me gifts, made me breakfast every morning, helped schedule appointments, worked remotely from a hospital, and prayed through all of this with me.

But the moment that struck me most wasn’t a grand gesture. It was a simple Sunday morning. J was running sound for service. He got there early, and since I couldn’t drive, Z brought me later. After worship, I got a text asking if I was okay. I texted back, “Yes, I’m near the back row.”
I watched him in the sound booth scanning the congregation. I kept looking at him, waiting for him to find me, and when he finally did, he nodded. It wasn’t a wink or a smile—just a man who wasn’t going to relax until he saw that his bride was okay. When his eyes landed on me, I saw the slightest relief wash over his face.

I know what MS feels like for me. I don’t know what my MS feels like for him. But I do know he will do whatever it takes to keep me safe. Every girl dreams of a knight in shining armor to slay dragons on her behalf, and J is that for me.

He will hate these public compliments, but too bad. He’s been married to an extroverted writer for 25 years, he’ll survive.

Happy anniversary, J.
Thank you for taking care of me.
I love you with my whole heart.
We’ll make it to Ireland one day.

A week ago I was officially diagnosed with Multiple Sclerosis.

The love that has poured in from family, friends, church, and coworkers has absolutely wrecked me (in the best way). It’s so much more than I could have ever asked for or feel like I deserve. So many of you are heartbroken because you know we’ve already walked through a whole lot (remember Hope at the Threshold?). In some ways it feels wildly unfair, but I also know that it could be so much worse.

My brain keeps time-traveling back to 2012 when SJ was diagnosed with profound deafness. You’re probably thinking, “Okay… MS and deafness? What do those even have in common?” One’s a disease, one’s a disability—totally different, right?

Well, kind of but for me there are a lot of similarities.

Both feel like a bomb just went off in your life the moment you hear the word. Both are pretty rare—roughly 3 in 1,000 odds. Both are lifelong. And for us? We had zero family history and basically zero real-life experience with either one.

They’re both nerve things, too. SJ’s is sensorineural hearing loss (the auditory nerve), mine is an autoimmune attack on my central nervous system.

Both things have come a long way in the past 40 years of medical advancements. Cochlear implants and disease-modifying therapies (DMTs) for MS both showed up on around the same time—the early 1990s. I’ve never seen the original cochlear implant in real life but I know from research they had a huge battery pack, wire dangling like a Walkman from the ‘80s. Fast-forward to 2025 and SJ’s implants are sleek, Bluetooth, rechargeable, incredible. I’ve watched that technology explode in just the 13 years since her surgery.

So when the MS community keeps telling me, “Treatment has come SO far in the last 20-30 years!” I understand that. Fifty years ago there were no DMTs and no cochlear implants. What used to steal decades of life or leave people unable to walk or hear is now… manageable. Treatable. Often livable in a really full way. I know it’s apples and oranges but it’s crazy how much science/medicine has advanced in my lifetime.

Last week J and I sat with some specialists picking a medication, and it felt a little like déjà vu.

In 2012 with SJ we had three cochlear implant brands to choose from:

Cochlear Nucleus (we picked that one), Med-El, and Advanced Bionics.

In 2025 with me three high-efficacy meds on the table:

Ocrevus, Kesimpta, Briumvi (that’s the one we landed on).

In both situations we prayed, did tons of research, talked with people who actually use the thing. In both cases the future looked exceedingly bright.

You know what I hear over and over from cochlear implant users AND from people on DMTs? Almost word-for-word the same testimonials:

“It’s life-changing.”

“Most people would never know unless I told them.”

“I live basically like everybody else.”

“Yeah, there are challenges, but I hardly think about it day-to-day.”

“You’re being diagnosed at the BEST time in history for this.”

“It’s hard at first, but just wait—it gets so much better.”

Just swap “cochlear implant” for “MS med” and it’s the exact same responses.

Of course, before you get to happy live-your-best-life part there is a lot of hard work to do. For SJ it was surgery and years of speech therapy to train her brain to listen with CIs and learn to speak. For me right now it’s debilitating symptoms, doctor appointments on repeat, and trying to find the treatment that actually makes me feel like a person again. People keep telling me there’s light at the end of the tunnel. Honestly, right now the tunnel is pitch-black and I can’t see a thing. I don’t know how long it is or when the light shows up.

When SJ was diagnosed there was this weird month of limbo between the first red flag and the official ABR test. I wrote a post back then titled “Nothing has changed but everything is different.” She was still the same smiley two-year-old running around—she had no clue our world was imploding. Physically she was unchanged; we just had new information.

This time, EVERYTHING HAS CHANGED. I can’t work right now. I can’t drive. Some days I can barely look at a screen (so the fact that I’m typing this today feels like a small miracle). Before diagnosis I had one weird symptom. Now I’m juggling six—coming and going whenever they feel like it. Some moments I feel almost normal. A lot of moments I’m face-to-face with MS in all its glory.

I thought about writing the big “here’s what MS is and how it looks for me” post, but… I’m just not there yet. I don’t know what “normal” is going to look like on the other side of this. I think it means infusions every six months and then getting back to counting steps, reuniting with my students, driving my kids around, planning birthday parties, and  living a really full life. I believe that, and I know God’s plans for me are still good.

But right now? We wait.

Wait on insurance appeals.

Wait to get the first infusion scheduled.

Wait to figure out why my optic nerves are mad at me.

Wait to see how my body responds to treatment.

Wait for life to feel like “mine” again.

My sister-in-law told me she kept waking up with this song on repeat in her head and felt like God wanted her to send it to me. It’s “Always On Time” by Elevation Worship & Bella Cordero. I’ve had it on loop for days. Something about the way it weaves Old and New Testament promises together—it’s ministering to me in the deepest way right now.

Here it is if you want to listen with me:

I don’t have a big update today, just a lot of real life and a heart that’s being held. I promise I’ll share more as soon as there’s more to share. Thank you for praying, for texting, for dropping off meals, for helping me make connections with other MS warriors. One thing I do know is that I am not alone.

As I was getting ready for my new weekly installment of Senior Sunday—a trend where parents post a photo or memory of their high school senior—I found myself getting very sentimental. The more photos I gathered and the more words that came pouring out, the more I realized I couldn’t possibly squeeze it all into a Facebook status. If you’ve followed Messy Mom for any length of time, you know that I process life by sharing it. I’m a woman of many words—and even more photos.

We just returned from a road trip to New England, something I’ve dreamed of doing with the whole family for years. Vermont has always been my happy place. My parents are from there, so I visited several times as a child and a couple of times as an adult. The New England fall foliage is indescribable—so breathtaking and awe-inspiring that photos can’t do it justice. It’s something you truly have to experience for yourself.

We haven’t always taken trips in the fall, but when SJ graduated from her deaf school in 2018, all the kids finally landed on the same academic schedule—which, in our district, includes a short fall break. That year we set out for Michigan to camp under the golden leaves.

We loved it so much we camped in Michigan again the next year.

In 2020, our annual fall trip was put on hold. The world was on lockdown, and that October was the only time we actually tested positive for COVID—three of us down for the count.

In 2021, we stayed at the cutest Airbnb in Indiana, and in 2022 we explored Clifty Falls, also in Indiana.

In 2023 and 2024, we camped in or near Hocking Hills with friends.

Last year, while sitting around the campfire, I gave everyone plenty of advance notice that we wouldn’t be camping for fall break this year. For Z’s senior year, we were going to Vermont—no exceptions. I was determined, but for a while it looked like it might not happen. I remember telling J, “It has to be this year—Z is graduating, and it’s our last chance!”

J challenged me, asking if I really thought Z would never take trips with us again once he started college. I said, “Of course not, but his school will be on a completely different schedule, and we have no idea where he’ll live or how demanding his workload will be.” This was our window—and I wasn’t going to miss it.

Thankfully, it all came together. We took off an extra day of work and school and managed to visit not only Vermont, but also Niagara Falls with an overnight in Buffalo, New York, two nights in New Hampshire, and one night in West Virginia on the way home.

To be honest, the leaves were a little dull compared to their usual vibrant splendor—but that didn’t make the trip any less meaningful. Z got to meet relatives from New England, the weather was perfect, and the scenery was still stunning. I’m so grateful we made it happen.

I know I’m a total sap, but looking back over the last eight years of fall breaks makes me tear up.

I think it hits harder than the holidays will because we know college kids (or just grown up children) celebrate the holidays, but those shared fall breaks in the same school district is definitely coming to a close. I will always cherish these times. Always.