Summary and requests for prayer
Life in general, and Camille's symptoms specifically, have been stable! She has had her best 4-month period since moving to the Valley. And she's trying a new treatment soon: anesthetize nerve bundles to reset the nervous system!
Thank you to everyone who sent us a card! I was able to give Camille one to two cards a day starting in early Dec and going all the way through early January. Opening them was definitely one of the highlights of her day.
And thank you to everyone who has visited us, reached out to us, prayed for us, or offered help in other ways. It means a lot.
Please pray:
For continued good spirits for Camille and me
That the kids would be able to trust that God is good even though he hasn't healed Mommy
That Camille, the kids, and I can develop deeper relationships with those at our church
That I can continue to carry out my roles w/out burnout (husband, caretaker, parent, employee, etc)
That the treatments, notably the stellate ganglion block on Jan 26 and Feb 9, would reduce Camille's symptoms, especially her seemingly-neurological ones. I will be fasting and praying both of those days that God would grant the treatment to be effective. I invite those of you who are of the fasting-and-praying persuasion to join me.
That Camille would have a complete recovery
That our hope would be in Christ and not recovery or even improvement
Yes, the last one is in tension with the prior two
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General update and family status
Hello friends and family. I hope the holiday was kind to you.
If you made a reading goal for 2026, feel free to count this post towards it.
Things have been stable here. School is normal. Work is normal. Camille's symptoms are stable. She experienced some improvement 3-4 months ago and this improvement has sustained. She is able to engage in conversation more than before. This is huge. It's wonderful for the kids to be able to talk w/ her more and be silly a bit, and I enjoy our evening conversations. Her fatigue is not nearly as severe as it used to be: she has gone in our backyard (French doors from our bedroom) for 100 days in a row and has even started walking to the couch and staying there for a bit when the house is quiet. She's funny: even when it was pouring rain she would briefly step outside in order to continue her streak. 😂 For reference, there were months where she was only able to speak in whispers and only for 5-10 minutes a day, and there were month-long or greater periods when she did not step outside her room a single time! So this has definitely been the best 4 months she's had since we moved to the Valley. On the other hand, she's dealing with boredom a lot now. Before, she felt too awful to be bored, but now she has the bandwidth for boredom. Replace the shackles of struggle with the handcuffs of hardship!
Jade started sleeping in Indi's room. At first it was a special thing but it became an every night deal. It is very sweet. My parents recently put together a bunk bed for them, so now they're bunk mates! While I'm writing this, they are sleeping in the top bunk together. 🥹 Lately, Indi has continued to be her super creative self with drawing, outfits, dance shows, etc. Jade does whatever Indi does, but is also learning to play a bit on her own. She is also extremely good at being loud. Her default speech volume is "yell". Asher is happy reading, doing rubiks cube, watching and playing chess, etc. The kids still have a deep state conspiracy to make it near impossible to find food that all of them will eat. We haven't had any serious sickness in the family, which I am so grateful for.
I joined a mid-week group w/ my church. The kids come with me and the church actually pays for a babysitter. We eat a meal together and then talk about the sermon and how we are 'doing', and pray. It's been really nice to connect w/ other adults in the church in this way and I'm looking forward to continuing it, and also developing relationships with people outside of the midweek group, which has already happened a bit. Camille has been attempting to develop connections w/ people in the church too by sending some of them voice messages. It is so impressive how dedicated she is to being as involved as she can be given her severe limitations. She is such a good example of doing what she is able to instead of not even trying because she can't do things to the level she would like to. I really admire her for that.
And now, I've kept you waiting long enough: I went for my annual checkup and have gained even more weight. I am now 16% more than my typical weight. But, the gloves have been taken off. The gauntlet has been thrown down. In other words...I bought a scale. What you are about to witness is the most anticipated faceoff since the Jake Paul - Mike Tyson Netflix special. In fact, Netflix contacted me about airing my fight but I said their network isn't NC-17, and this is going to be a slaughter.
I have a systematic, scientific method style plan, layering on tactics at set intervals (subject to change):
Eat less (and maybe eat better) for 3-6 months (diet)
Exercise bike for 3-6 months (exercise)
Stop the SSRI (chemical)
Will Chris be overcome by the travails of life, or will life bend its aged knee to an opponent the likes of which it has never seen? Tune in for updates.
Summary of Camille's symptoms/status
Emotional: There are definitely ups and downs but she is in good spirits 90-95% of the time, which is very impressive. I don't know how she does it, but am grateful God has given her this grace. We laugh a lot together and have a really good time.
Spiritual: She has been able to dwell on the Scripture I read her and that has helped sustain her. It's a joy to hear her talk about how awesome Jesus is.
Speaking: Voice level is usually at 80-100%! Since the last update, her [10th,50th,90th] percentile bounds for minutes spoken per day is [7,14,25]. For her previous update, it was [5,11,16]. That is a % increase of [40%,27%,56%]!
Listening: Since the last update, her [10th,50th,90th] percentile bounds for minutes listening per day is [13,20,35]. For her previous update, it was [11,16,25]. That is a % increase of [18%,25%,40%]!
Visits: She has had numerous visits and, for some of them, was able to talk for up to maybe 30-60 minutes. It's been great for her to see her friends.
Reading: She does not read more than sentence fragments, though she sure wishes she could.
Writing: She basically doesn't write.
Phone: She uses her phone to 'call' me, start tapping meditations which I set up for her, and ask Gemini questions occasionally.
Typing: None
Mobility: She can walk to the bathroom easily and goes outside every day! She has even started going to the couch some days.
Visual Processing of Movement: I haven't heard her mention this!
Sleep: She does not sleep quite as much during the day anymore. This is a part of her crushing fatigue and PEM abating. She's still working to improve her sleep quality at night.
Cognitive: 100% except that sometimes deep thought and concentration hurts her head, aligning with her sensory sensitivity severity. She stopped making novels in her head because she thought it was making her symptoms worse.
Pain: None.
Misc:
Treatment status
If a doctor simply looked at her medication regimen, she would look like a:
schizophrenic (aripiprazole/Abilify)
diabetic (tirzepatide/GLP-1)
recovering opioid addict (naltrexone/Vivitrol)
with HIV (lamivudine/Epivir)
who has myasthenia gravis (pyridostigmine/Mestinon)
and who is really into health and wellness (the many other supplements and prescriptions that she takes).
She takes 53 doses of medication a day (pictures below!). We are hoping to reduce this, both for her sake and our wallet's. I think we are single-handedly funding the pharmaceutical and supplement industries. It's not clear if any of the 53 doses of medication that she takes a day are having an impact. If any are, it is an accretive impact that is hard to pinpoint.
Camille is scheduled for two stellate ganglion block injections (Jan 26, Feb 9). We will see if that tamps down her nervous system activity, since something sure seems to be wrong there (see details below).
Detailed symptom status and how Camille's handling it
Currently, Camille breaks her symptoms down into two main categories:
crushing fatigue + post exertional malaise (PEM) (hallmark symptom of ME/CFS)
pain in her forehead and behind her eyes and a feeling of her 'brain not working properly in a very discomforting way'. She wasn't able to articulate this one well.
Fun fact: PEM is the thing where you 'exert' yourself and then feel worse for a period of time, possibly permanently. Imagine having that hanging over you whenever you 'exert' yourself! #2 is harder to describe, but I think it's the main symptom preventing her from reading, writing, looking too intently at something (sometimes she can't even look at my face...), listening to people or music or podcasts, etc. Both categories of symptoms are awful, but both have improved!
What led to the symptom improvement? We aren't quite sure, but our best guess is that #2 improved due to Camille pulling back on creating stories in her mind, and also being ruthlessly self-controlled about not using her phone almost at all. There seems to be a connection between certain forms of stimulation/engagement and her symptoms getting worse. I've said it many times and I'll say it again: ME/CFS is the most bizarre illness I have ever heard of. For some reason, even focusing her mind on creating stories makes it worse. Which is awful since that was such an effective way to pass the time. Looking at photos I've printed for her can also cause issues, and so can reading text, even a few lines of large print on a piece of paper. Etc. It's not clear why #1 improved. Maybe for the same reasons that #2 improved? It's all so mysterious and the different symptoms are most likely connected in some way. We just don't know how.
So the positive is that her symptoms have improved, but the negative is that she isn't able to make stories now, which is contributing to the boredom. Did I mention how incredible her self-control is? The cumulative time that she spends looking at her phone in a year is probably around 3 hours. That is not an exaggeration. Imagine sitting there for 2-5 hours at a stretch with no interaction and almost nothing to do, with your phone right there just tempting you with a way to not be bored, but having the self-control not to use it. It's incredible. My relationship with my phone, and my need to consume 'content', is much less healthy than hers is.
Speaking of devices, it turns out that AI even reaches the to dark recesses of ME/CFS: Camille discovered that she can interact w/ Gemini (she calls her 'Gem') and has been using her to learn about things, listen to Bible passages, listen to short bits of a podcast, etc. It has been a blessing, but Camille thinks that she was interacting too much and her #2 symptoms started to get a bit worse, so she has pulled back. She was using it to learn about different 'brain retraining' programs (I heard they've been rebranded to 'amygdula and insula retraining'). The wonderful thing is that she can do it without having to look at a screen; she interacts w/ our smart speaker.
Here is yet another example of her bizarre seemingly-neurological symptoms that I have not mentioned in any newsletter yet: her eyelids flutter so much when her eyes are closed that it looks fake. I shared a video w/ the doctor and she had to confirm that Camille was actually attempting to sleep, because it looks like she is actively fluttering them. Hopefully the SGB helps. We'll see!
Camille has also started sending voice notes to people, which has been a wonderful way for her to connect. I think she even made a few brief phone calls since the last newsletter, too. For anyone who received a voice note but couldn't play it, please let us know. It seems some iPhones can play them and some can't and I'm trying to figure out what's going on. Believe it or not, Jim (that's my name for Gemini) wasn't much help here.
ME/CFS Resource
Note: I am intentionally not posting science-minded resources because I don't think that would be very engaging or useful. Instead, I am posting resources, often gut-wrenching because that's what ME/CFS is, that pull back the curtains of what life is like w/ ME/CFS, to help you relate to Camille a bit. Camille told me that, while many people have offered help and there is not much they can tangibly do, they can experience her suffering just a teeny tiny bit by stepping into her world through these resources. And if there is a way to let Camille know you've done that, that will mean so much to her and help her to keep going.
I posted about 'Physics Girl' (Dianna) on YouTube in a previous update. Here is more info.
Here is a video from the perspective of one of her friends (who is also famous on YouTube), when Dianna was almost at her worst (15m). It really captures caregiving, what it's like to interact as a friend, and the experience of the illness well. He ends on a positive note.
Dianna has actually regressed significantly since her incredible improvement. I believe she is now mostly bedbound again, but is not as severe as before. For example, I think she is able to walk to the bathroom, etc. Her experience is very illustrative of the cruelty of the illness.
Note From Camille
Here is a video of Camille's spoken word. It is deep, clever, and very touching. She's got more double entendres than Lil Wayne.
And here is her note:
Since our last newsletter, I have gone from four to five percent capacity to about eight to nine percent. This is huge! As I’ve been thanking God for this new welcome change, I’ve been reflecting on how different this last holiday season was compared to the one before.
In 2024, I could barely speak above a whisper. I was only communicating what was absolutely necessary. I was taking about one shower a month and inconsistently going outside into our backyard.
This holiday season, I have 75 to 80 percent of my voice strength back—sometimes 100 percent even comes out. I’ve been able to socialize for longer periods of time with a wider net of people. I take one to two showers a week (Hallelujah!) and I’ve been going outside every day for the last 87 days, rain or shine. Because if I can, I’m going to, even if it’s just to put my feet on the cold wet stone right outside my door. And for the grand finale of 2025, I spent Christmas Day at my parents' house and was able to watch my kids, nephew, and niece each open one present.
Can we just take a pause right now for a dance break? Put on your favorite jam and shake that tail feather (I know all the Sais fam is getting down and cutting a rug right now).
Seeing my progress over the last year fills my cup. But in truth, I oscillate from feeling content to still wanting so much more. I know this is only natural, but it can be a hard road to navigate. My hopeful wishes for 2026 are: an increased capacity to take in sound (I would love to listen to music again), more time spent outside of my bedroom, and more socializing and being a part of people’s lives. Who knows what blessings the Lord will bring this year? But I am hopeful and will keep on dreaming and praying.
No doubt Chris has told you about the stellate ganglion block that I’m going to receive at the end of this month. I would appreciate prayers that this treatment would be effective, and if effective, that I would proceed with wisdom and caution. I would like to avoid a relapse as much as possible. If the SGB is not effective, I’m gearing myself up to respond with strength and grace, which I would also appreciate prayers for.
Other prayer requests:
The prayer Paul prays in Ephesians 3:14–20.
Continued endurance, patience, joy, and hope.
For a clear mind; it can be a lot to be in your head all the time.
For my kids, that they would know God and love what He loves.
For Chris, for continued love and patience parenting most of the time and dealing with all the kids' cuckooness.
For our last tidbit, I’ll leave you with this: On the first day of the new year, I sat on the couch with my three munchkins and my husband. It was a great start for New Year's Day. Love you guys all! Thank you for being so supportive and wonderful.
PS: I love getting all the Christmas cards. It’s one of my favorite traditions, and it was extra special this year.
From the center of my heart, Camille
Photos and Videos
New Year's Day! A wonderful start to a new year, feeling like an old one.
The kids made her light-up angels!
Doing Jade's hair is such a sweet gift.
Precious.
New Year's Eve.
Colossians 1. "Christ in you, the hope of glory." We are looking forward to that glory.
This regimen is old. She is actually taking more now.
Camille is a champ with the needles.
Jade learned how to ride a bike! All 3 kids did it before they turned 5.
I can't even. Can you?
Celebrating something like 50 days in a row outside or something like that! Raise the roof.
Friend from our new church.
Trying out new hair, and clothing, styles.
Friends from work.
See what she did there?
This dream team represented their school at a chess tournament and medaled.
Camille went to my parents for Thanksgiving and sat in a bedroom. This is her arriving. Jade wants to help her come in.
Aunt, uncle, cousins oh my!
Christmas celebration at Camille's parents. She was able to come out and watch for a bit. Which was awesome. Her mom thinks so, too.
Mi bandita.
Fabulous.
Imitating my sister, though my sister claims she never stands like this.
Comforting Jade in Jade's room (before she moved in w/ Indi).
Indi's birthday cake!
This girl was not shy in front of the crowd. I was surprised, actually.
Old friend from our old church.
Nano banana.
My sister has helped with a couple school projects, while ensuring Jade puts in the thinking and effort! It is a most welcome reprieve for me.
Celebrating Camille's 38th birthday.
Walking down the hallway! This is always a treat.
Good stuff.
More family!
Sitting at the dinner table for 5-10 minutes. Look at the joy!
