Summary and requests for prayer
Thank you to everyone who has reached out to me or Camille. I appreciate the texts and Camille especially appreciates the Christmas cards! The cards are covering her dresser and nightstand.
Camille's symptoms have been stable. We are seeing a specialist and will discuss the treatment plan at our next appointment, after having done many many tests (some still incoming). The kids and I are doing well, overall.
Requests for prayer:
That we would identify issues to target with treatments, and that they would be effective
That God would give Camille supernatural endurance for her suffering, and that she would have unexplainable joy in him in the midst of it
That Camille would recover completely from this illness
Wisdom for me for choosing a church to get involved in
Time for me to be able to do all the things I need to do (getting my work done at my day job, Bible research and thinking about what I'm looking for in a church, time w/ the kids, time to exercise, etc)
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General update and family status
Hello everyone. It's been over 3 months since our last update. Camille's symptoms have been mostly stable and life continues for the rest of us.
The kids continue to do well. They really enjoy spending time with one another and are all developing in school both socially and academically. They also really enjoy spending time with their grandparents. We have had a nice holiday break; it has become a tradition to do 'sleepovers' in the family room, where the kids and I watch a movie with cookies and hot cocoa and then sleep on mats. We wish Camille could have joined us but it was nice knowing that she was at least in the same house.
I am also still in the process of deciding which church to get connected with beyond the Sunday worship gathering. I am taking it slow and have been doing some intensive Bible study, which is enjoyable. Also, I got an exercise bike and am hoping to lose the 10% of weight I gained over the last year. This is the heaviest I've ever been and am ready to make that extra weight tremble in its final moments.
Spending time with the kids can be enjoyable, but can also be...let's say "taxing". 🙂 They definitely like to talk to each other and me, which is better than them not talking enough. But it is quite a lot. They also only like a small # of food items and have conspired to ensure that the set of food items each likes poorly overlaps with the others' sets. So food is an area where I feel quite 'defeated'.
Summary of Camille's symptoms/status
Emotional: She is fairly stable but definitely has 'down' days. I try not to think about her level of suffering because it is hard to handle. I continue to be amazed by how she can keep such a good attitude most of the time.
Spiritual: Her faith in Christ is there and helps her so much. It's unfortunate she is unable to read the Bible (beyond maybe one verse, on good days), journal, or listen to worship music (well, she actually listened to two worship songs in the past 3 months, which is a big deal!). But her hope is the glory that is coming that will make even this extreme suffering light and momentary in comparison (2 Corinthians 4:17 "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison").
Speaking: She has been whispering 5-10 minutes a day and her partial voice (it's squeaky, not completely normal) has started to come back intermittently!
Reading: She can read maybe a few sentences a day.
Listening: She is still wearing earmuffs almost all the time, and earbuds at night. But she has been able to listen to people a bit more.
Writing: She hasn't tried to do this beyond writing me very short encouraging notes.
Phone: She has read a few texts here and there, but that's it.
Typing: She can type 2-5 sentences a day, on good days, if she closes her eyes.
Mobility: She can still walk to the bathroom on her own!
Visual Processing of Movement: She doesn't seem to be as sensitive to this as she was.
Sleep: She is mainly sleeping well.
Cognitive: Her cognition is 100%.
Pain: No serious pain!
Misc: N/A
Diagnosis and treatment status
We met with another ME/CFS specialist, Bella Chheda, and got many tests done (total of maybe 40 tubes of blood, plus urine, saliva, and breath samples). Several results came back abnormal but I don't know enough to judge how significant they are. We will meet with the doctor later this month to discuss next steps for treatment. It is great to have a doctor who actually understands ME/CFS. She is actually a working member of the U.S. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Clinical Coalition and is part of the Guideline Committee. She helped write the consensus recommendations published in the Mayo Clinic proceedings.
We think low dose naltrexone has been helping her, but it's hard to be confident because her symptom changes often seem so arbitrary. We've been titrating the dosage up and down to confirm, and are on the last leg of titration for the purposes of confirming that LDN has an impact. Once that is confirmed, we'll fiddle w/ the dosage more to dial in the optimal dosage. If things work out as we hope, this will be the first treatment that has an impact, one way or the other, on her symptoms!
I'm also in discussion with multiple neurosurgeons to see if we can rule in, or out, structural issues. I've sent them all the imaging we gathered and am hoping to get their official recommendations in the first half of 2025. Unfortunately, some suggest coming in for in-person evaluations to increase the confidence of their recommendations, which is difficult, especially since most of these surgeons are on the East coast. As it stands, it does not seem like Camille has a structural issue, at least one leading to brain stem compression. The main remaining potential candidate is occult tethered cord (might also look into CSF leaks at some point). She also technically has Chiari malformation, according to one neurosurgeon, but it is likely not significant enough to do anything about.
ME/CFS Resource
Here is a forum post that captures what it's like to have ME/CFS in a clever way, though I sure wish Camille's symptoms were as "mild" as this person's:
I’m coming up on a year of being sick. With an entry-level amount of experience under my belt, I'll share a few things I've learned.
You will play by your body’s rules. You won’t will anything into existence.
You will have to do less than you ever imagined. You won’t have to do anything.
You will be disappointed by people a thousand times over. You won’t have to guess where anyone stands.
You will start making juice in the morning. You won’t use sugary fruits.
You will lose most of your muscle. You won’t really care.
You won’t go on Instagram much. You will be jealous of everyone around you.
You will spend thousands on supplements and treatments. You won’t see much difference.
You will make tenuous arrangements with friends. You won’t keep your plans.
You will lean on your partner for just about everything. You won’t doubt how much they love you.
You won’t see much career growth. You will value any income.
You won’t need credit card airline points. You will convert to cashback instead.
You will accept that every metric on your smartwatch is going the wrong direction. You won’t stop wearing your Garmin.
You will drive yourself insane. You won’t drive yourself anywhere else.
You will give up 100s of tubes of your blood. You won’t trust most doctors.
You won’t need a gym membership. You will need a Netflix subscription.
You won’t plan a honeymoon to Italy. You will settle for something local.
(editor's fun fact: Camille and I were going to go to Italy for our 10th anniversary in 2020, but this thing happened you might have heard about)
You won’t get any guarantee of improvement. You will keep going anyway.
I saw this one on New Year's Eve and it's a bit closer to Camille's situation. I appreciate the dark humor, and this post helps illustrate the resilience that God has imbued so many people with. The comments section evinces additional resilience. Though, incredibly, "literal hell" is even worse than severe ME/CFS!
Note From Camille
Camille started a note but wasn't able to finish it. Hopefully next time!
Photos
I've been trying to get more photos of Camille with the kids. Enjoy!
Indi 'reading' to Jade.
Precious moments.
Imagine this creature riding her scooter across a busy intersection at 7:55am to school with two other wild ones and a parent in tow, not on Halloween. We got some stares.
