Summary and requests for prayer
Hi friends. It's been over 5 months since our last 'full' update! We have been busy, especially over the summer, but are more settled into a routine now that the school year has started.
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 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 we are trying would reduce Camille's symptoms
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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Put down that novel. Stop that scrolling. Pause that show. Because it's a long one.
General update and family status
Summer had a lot going on and it was great (and the weather was unusually mild!). The kids went to a summer enrichment program, church camps, and a YMCA day camp. They went to Legoland with my family and Disneyland with Camille's while I enjoyed blessed quiet and rest with Camille at home. We also went to the beach multiple times (I've got all the good gear now) and are becoming proficient at building sand structures that defy mother nature. The kids have spent many Sunday afternoons in my parents' pool and Jade kinda sorta learned to swim. I took them to the Pacific Park amusement park at the Santa Monica Pier, which was a great time. We also went to the Kidspace Museum, the Gentle Barn (cow hug therapy is best therapy), and the Google Summer Event. We also had a rock climbing party for Asher's birthday. Oh, and Friday night (half) movie nights! I tried to do that almost every Friday during the summer since they watch so little TV during the school year.
Camille's health peaked and then declined, but thankfully not to her lowest point, and it has now ticked back up a bit. Her voice is largely back, which is wonderful for not only her but the rest of us! And she is in good spirits almost all of the time. She is able to interact w/ the kids a decent amount, which we are grateful for. Multiple friends visited her and she was able to talk with some of them for long stretches. She asked for a letter board to put messages on. She has placed parts of the messages herself but the focus required to pick out all the letters can make her symptoms worse so the kids have helped too.
After doing a lot of reading on a particular theological topic (if I read the words kephale and authenteo one more time...), the kids and I are 'exclusive' with one church and will be joining a mid-week group, which I am very excited for. It will be great to get more connected to others in the church. I am hopeful for a community where we help each other grow in knowing, loving, trusting, and obeying Jesus.
Jade finished preschool and now all three are going to Topeka. We walk to school and I really enjoy walking home by myself after drop-off (I used to have a wild one with me!), and same for pick-up. It is a nice time of prayer and enjoying the beautiful sky and weather. In addition, I now spend less time in the car and have a bit more time to spend on my other responsibilities. Jade was already known by a lot of staff at the school, from coming to pick up Asher and Indi, and the teachers and afterschool staff really enjoy her. Also, her voice is hoarse right now and it is super cute.
I have been enjoying life and God in spite of everything going on. I am very grateful for that and for how he is giving me the endurance to keep serving my family fairly well and also do the other things I need to do. My days and evenings are...mainly nonstop. Of course I wish I could be more present with the kids and there more for Camille, but I accept my limitations and trust God with the outcome for my family. I am decently present with the kids, but not as much as I want to be. But in all honesty, the kids are doing well! They get to interact with Camille a good amount and know that she loves them so much, and they get to spend a lot of time with each other, and also with their grandparents. It has been fun to see the kids play together so much; they are creative in coming up with ways to play and it is really good for them to spend so much time together. The kids also get to do sleepovers with Mommy where one kid sleeps on the floor (on top of a mattress. Come on! Am I the kind of person who would let them sleep directly on the floor?!) in our bedroom, which is another way for them to feel connected with Camille. We are blessed in the midst of a terrible situation. And Camille is so considerate about not complaining, making me feel guilty, or asking for me to do more for her. Despite the profound suffering she experiences, she is thinking about me and my welfare. She is such a good example of how to suffer well and demonstrates the fruit of the Spirit (Gal 5) so much: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self control.
Now on to what everyone has really been wondering about. I don't have a weight scale, but I don't think I have lost the weight I gained. Might have even gained more. I am trying to eat slightly better and also hope to eventually get back on the exercise bike. It's so hard given how little free time I have, though. Eventually I want to get off the SSRI too (but don't want to rock the boat right now), which might help. If you are interested in setting up a Polymarket bet, let me know; I could use the extra cash.
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 is keeping her faith in Christ; she knows he is good despite her circumstances. She also shared with me that she has grown in how much her hope is placed in God's promises of what is to come in the next life versus this one. That isn't to say that she does not hope for improvement and healing in this life, but that's more of a "I hope it does not rain tomorrow" type of hope while her hope in God's promises is a "you can take this check to the bank and know it will not bounce because the check writer has some seriously deep pockets" capital H type of hope.
Speaking: Her voice is back! It fluctuates mainly between 50-80%, but sometimes goes higher and sometimes lower. Since June 1, her [10th,50th,90th] percentile bounds for minutes spoken per day is [5,11,16].
Listening: Since June 1, her [10th,50th,90th] percentile bounds for minutes listening per day is [11,16,25]. She does still get sensory sensitivity quite a bit, and it leads to odd pain in her head too, which is a useful signal.
Visits: She has had numerous visits and, for some of them, was able to talk for more than 20 minutes. It's been great for her to see her friends.
Reading: She does not read almost at all, though there have been a few occasions where she couldn't resist reading a text message or, in an extreme case, an entire letter that a friend wrote her. She sure wishes she could read more.
Writing: She basically doesn't write.
Phone: She rarely uses her phone, though I can tell she's starting to improve when she is more tempted to use it. This last week she actually took a selfie w/ Indi and sent it to some family members. She went 20+ days without using her phone at all, other than to 'call' me (shortcut on home screen). She 'calls' me multiple times a day, but we don't actually talk; it's simply a signal that she would like me to come in when it is convenient, usually so she can ask for something. For example, today I forgot to bring her breakfast (it is Saturday, so I was hanging out with kids and you know how that goes!) and she called me around 10:30 to ask for it.
Typing: None
Mobility: She can walk to the bathroom easily. She has walked to the kids' rooms a few times and sometimes goes through our bedroom French doors to sit in the backyard gravity chair.
Visual Processing of Movement: I haven't heard her mention this!
Sleep: Not great but she's gotten used to it. Sometimes she sleeps a lot during the day, and sometimes not. She is doing her best to stay awake during the day so she can sleep better at night, but when she is feeling that ME/CFS fatigue (versus normal somnolence), she doesn't fight it.
Cognitive: 100% except that sometimes deep thought and concentration hurts her head, aligning with her sensory sensitivity severity. She is making novels in her head. Every once in a while she shares snippets with me, which I enjoy.
Pain: None.
Misc:
Diagnosis and treatment status
As expected, there has been no "ah, we discovered the specific thing causing your symptoms and know how to fix it!" moment.
Camille is trying a lot of pharmaceuticals and supplements that sometimes help others w/ ME/CFS, and her doctor is prioritizing the treatments based on her specific symptoms.
Her current list is below.
Supplements
Charcoal
Pycnogenol
Nattokinase
Vitamin D
Electrolytes
Glutathione
Omega 3
NAC
Magnesium
Phospholipid Complex
Pharmaceuticals
Citalopram
Naltrexone (low dose)
Pyridostigmine
Fludrocortisone
Ivabradine
Aripiprazole (low dose)
Vitamin B12 (injectable!)
Part of the strategy is to try a bunch of things in order to get some improvement and then slowly remove things. The supplement and drug companies are loving us right now, though. Camille said that she thinks there is a chance that the Aripiprazole might actually be helping! This is notable because it is the first drug/supplement that she thinks might be having an impact on the symptoms that lower her quality of life. I suspect naltrexone is also having a positive impact, but we would need to titrate it down to get more data, and we don't want to 'rock the boat'. If you are wondering how Camille and I explain why she has 'crashes' and then improvements, since the drugs and supplements don't appear to be the main factor (excepting naltrexone, which I suspect might be a big factor, and the aripiprazole she just started taking), we don't know! 🙂 They appear to come randomly, for the most part. I suspect that if she pushed herself harder she would crash more, but we are at the point now where we have enough experience, and Camille has enough self-control, to not get into that situation (for the most part).
Hopefully Camille will be able to try more treatments some time soon, including more nervous system related things (brain retraining, vagus nerve stimulation, stellate ganglion block, maybe transcranial magnetic stimulation, etc).
I also still need to send her MRI data to some neurosurgeons to rule out structural issues. This has been low priority because I suspect she does not have a structural cause. But it's still worth eventually checking w/ experts.
Side observation: she also did an extended course of Paxlovid and it had absolutely zero impact on her. I've always thought that pharmaceuticals are these super powerful things that will assuredly impact you (and to be fair, many are like that), but that has not been the case for Camille. It turns out that people can take some and they have no clear impact at all!
Another fun fact: a lifetime supply of an antidepressant costs less than a single 15-minute visit with a UCLA family medicine doctor. Chew on that.
ME/CFS Resource
I participated in multiple meetings with Congressional staff through an organization called Solve M.E., advocating for more funding for ME/CFS / long Covid research. Later, the advocacy group reported that "This year’s Senate Appropriations bills include some of the strongest support for ME/CFS we've seen in over a decade." This was my first year participating. Coincidence? I think not. 😜
But in all seriousness, based on what I have heard from multiple researchers, ME/CFS has more focus in the research community than ever before (thanks, Covid!). Some researchers are excited. I am trying to keep my expectations low, though. This might be my first rodeo, but I've talked to and heard from a lot of other riders who have been in their fair share and I intend to learn from them rather than learn the hard way.
On a more sobering note, others from my district participated in the Congressional staff meetings w/ me and it was interesting to see people from my own area who are also experiencing the horrors of ME/CFS (or long Covid). Most of us simply shared our 'impact statements'. Some notable items that were shared are below. The suffering of those with this illness is profound. And remember, those suffering the most were not (and could not be) at the meeting!
"I was co-valedictorian, graduated summa cum laude, got my PhD at a prestigious university, and was a university professor. If overachieving could get you out of this, I wouldn't be here...I haven't yet filed for disability because I have to use my limited energy for basic care, and I am scared that spending additional energy on fighting for disability will make me worse, permanently."
"I've had ME/CFS for 50 years."
"I was one of those who, sadly, scoffed at those who said they had long COVID. I thought it was a condition of laziness. And then I got long COVID."
"Trying harder makes you worse."
A mom spoke about her daughter, who I think was 25-35 years old, who got worse and worse until she became bed bound as she tried to 'work through it' with physical therapy, etc, as recommended by doctors: "I was at a wedding and had to explain why my daughter couldn't come. A 93 year old was saying 'why can't she come? I'm 93 and I came.'" This one was the most emotionally impactful because she practically sobbed every time she shared her story (we had numerous meetings with different staffers); she was so heartbroken over not only her daughter's symptoms, but over how stark the difference in her daughter was pre and post illness and also in how misunderstood her daughter was. She also exhibited the desperation of someone who had come to realize that 'no' her daughter could not 'work through' this illness and 'no' the doctors didn't know how to 'fix' it, and that it was possible that her precious daughter's life might be permanently 'ruined'. She was practically begging the staffers, with tears streaming down her face, to fund more research. It was heartbreaking. Maybe she was the reason ME/CFS got such strong support this year!
Note From Camille
Our family has made another trip around the sun with a severe chronic illness. I had two main prayers for this year. The first: that I would be physically restored. And the second: that I would have greater joy and peace no matter the state of my health. God did not answer the first with a 'yes'. But the second he most definitely did. I have been intimately learning what still stands when all else is stripped away from you. Romans 8:38-39 says "For am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord." For greater context, you can start at verse 28 or even verse 18. We may face the most harrowing experiences in this life, but the one thing that cannot fall or crumble beneath us is the love of God and his eternal hope for those who trust in him. This truth has become more precious to me than it ever has before. As I walk and live in this truth, the flowers of my faith have produced greater joy and peace. Especially on my worst days when I am completely frustrated with anguish, God's promises are upholding me.
I wanted to express how grateful I am for all of you, and that I know it must be very hard for you to know exactly how to support our family due to the nature of my illness. Your prayers mean everything to me. In addition, reading this newsletter and being informed on my illness means so much to me. This is the only avenue in which I can currently be known and seen outside of the very small group of people that I am in regular contact with. So, thank you for taking the time to know and see me. We are so blessed by your support and love. Please continue to check in on us, pray for us, and keep us updated on your lives. Chris shares updates with me when I have capacity, and it brings me so much joy.
I love you all and wish I could give you physical hugs.
From the center of my heart, Camille
Romans 12:12 "Rejoice in hope, be patient in tribulation, be constant in prayer."
Photos
Every once in a while, Indi participates in an unauthorized sleepover. Imagine waking up and almost stepping on this first thing in the morning!
Sleeping with Mommy.
Jade got the stomach bug and couldn't keep any liquids down. Camille found a way to physically comfort her little girl.
Snuggles with Mommy.
Picture day at school.
Beyblade session!
I don't know what Jade is telling me but Indi is taking her job seriously. (Kidspace Museum)
This alpaca was chill. No cap.
Indi really likes soft things and really likes animals. So you can imagine how she's feeling here.
Santa Monica Pier.
The sand creature emerges.
This was very special because Camille was able to sit in the backyard with us.
Jade only has one hand now but she actually dealt with it better than I expected.
These bovines can warm the coldest of hearts. #hugacow
Every crag master starts at the beginning. Adam Ondra, we're coming for you.
Matching styles.
Asher was really into beards for a while, so we all got beards for his birthday.
I was playing a game with Asher and Indi and looked over to see Jade had made friends with a group of non-English speaking young adults. They played on multiple obstacles together and had a great time. I don't know who was having more fun, Jade or them. At one point while swinging, Jade's foot collided with one of their mouths and they started to bleed. I still don't know who these people were or why they were at the park. They used Google Translate to let me know when they were leaving, at which point they got on bicycles and left with a man who had the worse teeth I had ever seen. It was all very strange. But I am grateful Jade got to make more friends (like she often does).
Last day of preschool, with her teachers.
Note: Fiona let the kids do her hair. 😁
