Summary and requests for prayer

Hello friends. Life is chugging along. The kids are enjoying school, God is enabling me to manage everything fairly well, and Camille has had her best month since last May!

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:

Note: I'm including a bit more details and humor in this post because Camille encouraged me to use this newsletter as an outlet. I like to write and try to be funny, so here you go. It's lengthy. 

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General update and family status

The kids are in their last 3 months of school. Indi turned 7. She has been learning to read and her skills are improving at a high rate. She naturally is reading text that comes across her gaze, which is a good sign! Jade turned 4. She can identify every letter in the alphabet, count well, and reason about all sorts of things. She's super cute when she talks. Apparently Asher already knows everything and has nothing left to learn. But he started taking jiu jitsu, so hopefully the other kids will put him in his place. 😜 The kids have lots of fun and get lots of love from their grandparents. Also, Indi has been asking why God hasn't healed Mommy and we have had good discussions about how we can know God the Father loves us given that he gave his son, the costliest of all sacrifices, for us (Romans 8:32), even though we do not know why he hasn't healed Mommy (Romans 11:33-34).

I'm managing everything pretty well, with a good amount of help from my parents and in-laws. Meals for the kids continue to be an issue but I did find something that all the kids like: scrambled eggs with bacon and cheese. I should probably just buy them a bucket of cholesterol. I still need to find someone to help out w/ cooking+cleanup, and probably get the house cleaned every once in a while. We trialed someone for a bit but it didn't work out for them. In lieu of paid help, I'm trying meal delivery services to outsource my cooking. Based on my experience so far, I'm not expecting them to work out, but will give them a fair shot.

I went to the doctor for a physical and discovered my weight increased by 10% since the last time I weighed myself, which was over a year ago. My weight has been about the same since I was 18 (I know, I know, lucky me), so I am considering this a challenge to see if I can get back to baseline. It will be an interesting experiment because there are three potential culprits (i.e. things that have changed since last time I weighed myself): SSRI, diet, exercise. But I am only focusing on the third one, via an exercise bike and at-home workouts. We'll see what impact it has!

Now on to what everyone has been waiting for: Camille! Her symptoms have been a bit better the last 4-6 weeks. That is not to say that her symptoms are still not severe, but they are improved, which is a very welcome change. One sign that she is feeling a bit better is she asked me to invite someone over to visit her, which is something she did not feel ready to handle for months!

Why did her symptoms change, you ask? We don't know! It could be due to one of the treatments listed below, due to peoples' prayers, due to God's unsearchable plan, due to something else, or due to nothing at all, though some might philosophically disagree w/ that last option on principle, or the religious ones on a different principle! The reason we don't know is because there is no clear link between a change in <whatever> and a change in her symptoms. That doesn't mean that there is no link; but that the link isn't clear; there might be delays in symptom changes, or symptoms might improve/worsen when multiple changes are compounded, etc. This muddies the cause-effect waters significantly. And everyone knows that muddy waters are tricky waters.

Summary of Camille's symptoms/status

Diagnosis and treatment status

Lots of test results came back, and I am not going to go into great detail, but the summary is that there is no smoking gun (I didn't expect there to be), but there are potential indications of potential issues with: small intestinal bacterial overgrowth, blood clotting (there's a good amount of literature about this link w/ long COVID, mycotoxins (mold-related), babesia infection, possible borrelia (Lyme) infection, possibly reactivated Epstein Barr virus (the cause of mono), and then some other markers and genetic variations (SNPs) related to muscle and nervous system stuff and other things I either forgot or didn't understand (though I tried to write it all down!). She also just barely meets the diagnostic heart-rate criteria for POTS, though she doesn't have the severe orthostatic intolerance that many others do.

She is now getting additional testing at different labs to double-check a lot of those potential issues, given much of the testing is so unreliable and difficult to interpret.

Significant treatment changes:

Started:

Stopped:

Near-term planned treatments:

Longer-term potential treatments:

ME/CFS Resource

This isn't academic, but it's probably fairly relatable and could be impactful if you watch it. I found out about this Well known Youtuber (channel PhysicsGirl) who got severe ME/CFS after getting COVID (5 minute video). Her follower-count has put ME/CFS just a little more in the public eye.

She started to get a bit better after a stellate ganglion block: "I spent 1.5 years completely bedridden. I couldn’t talk. I couldn’t listen to anything, even ambient sound. Or look at anything. I wore dark glasses. Now I can watch TV, embroider, talk to friends and walk a bit. Some amt of recovery is possible, even from a very severe state." (post)

Someone's response to the above X post hit me hard. The level of suffering for many w/ this illness, and those in their circles, continues to make an impression on me. "That's amazing! I long for this for my partner who has been bedridden nearly 2 years and effectively blind for most of that time. Conversation is not possible. I miss him so much."

Note From Camille

Chris' notes:

<note begins>

A Circus Coaster

How do I describe to you what it's like to have a complex illness such as mine at the level of its severity? This is a question I've been thinking about for months now. It is extremely difficult to describe the details of my illness. However, I have come up with a few general illustrations to give you an understanding of what I go through.

Before we get into the nitty-gritty, I must ask you to try to clear your mind of everything you know about sickness. I know this will be difficult and not done perfectly, but do your best to see these descriptions with fresh eyes. This is important because ME/CFS does not play by the rules of nature; it has its own rules, rules that have yet to be discovered. When a compass says this way is North, ME/CFS says, "I'm sorry, it's actually South. And the next day it will be East. And the next, it'll be West. But perhaps on Tuesday, it will actually be North." It is a world of Mad Hatters, appearing and disappearing Cheshire Cats, and shrinking bodies that float in their own flood of tears. So, buckle up and get ready to ride this circus coaster; it's not going to be pretty.

Have you ever seen the movie, The Princess Bride? If not, it's a fantastic movie: sword fights, a damsel in distress, a man with six fingers, and a giant who rhymes. It pretty much has everything you need to have a successful movie. But I digress. In the movie, the hero Wesley gets captured by Prince Humperdinck and sent to a torture chamber. He is hooked up to a machine that sucks the literal life out of him. At first, they suck only a few years of his life, but in Prince Humperdinck's rage and thirst for revenge, he cranks the machine up to its full capacity, sucking nearly all the life out of Wesley.

When my fatigue is at its worst, it's as if I'm the one that is hooked up to this machine, and nearly all the life is being sucked out of me. It is a feeling like I have never had before. To be even more specific, I want you to imagine that you're lying on your bed with an invisible, heavy weight on top of you. This heavy weight is pressing you down farther and farther towards the Earth, making it impossible for you to move or think. Even sleeping is a tiresome task. You cannot escape this oppressiveness. You simply just have to surrender and...exist.

As you know, my symptoms are not limited to crushing fatigue. I have extreme sensory issues, among many others that are constantly changing. One of the hardest parts about having ME/CFS is that many of my symptoms are delayed. This makes it extremely difficult to see any real cause and effect. I might be having a good day where I'm able to take a shower, take a short walk outside my bedroom into the backyard, and have a couple of short conversations with Chris and the kids. However, the next day, I might wake up, and 30 minutes later, my symptoms have overcome me, and there's no way I'm getting in that shower or saying more than a couple of words.

I feel like I am in a boxing ring with an invisible opponent: swinging, jabbing, sending my best uppercut, hoping that my efforts aren't in vain. I try to be on guard from every angle, but it's impossible. ME/CFS comes up right behind me with a hard blow straight to my kidneys. Buckling at my knees, I collapse, and I'm down for the count. But rest assured, I always get up for the next round. It may happen slowly, but I always get up.

How does one fight an illness like this? One that is so unpredictable. One that has no clear path to healing, but about a million different treatments to try that may or may not help. It is completely maddening and utterly demoralizing.

A few months back, I was crying about my very frustrating circumstances, asking God, "What can I possibly work towards with an illness like this?". To my surprise, the answer came almost instantly: "Suffering well is what you can work towards, Camille."

Maybe this sounds strange to some of you, I don't know, but hear me out. I don't know what the future holds for me, and good health is not guaranteed for me, or for anyone else for that matter. If all my hope, joy, and purpose are in my health, then I truly am living a very sad life. It has to be in something greater, something that is actually secure, because then I can have joy in the midst of my suffering. Thankfully, my hope is in Jesus and the promise that one day, on the other side of the glass, this will all be a distant memory.

Therefore, I will be an example to my husband, children, and anyone else who bears witness to my life, on what it is like to face a most terrible illness while holding on to the immovable rock that is Jesus, with grace and dignity. Now does this mean that I'm giving up on trying to get better? Absolutely not. I will continue to get up round after round. But as long as I'm on this circus coaster I will ride it well, because one day, the Mad Hatter isn't going to get the last laugh. I will.

From the center of my heart,

Camille

Photos