** there is a note from Camille at the end! **
General update and family status:
Hi friends. Camille's MRI went well! She was actually only in the machine for 75 minutes or so, but they had booked the appointment for 3 hours just in case. Thank you for the prayers. We are determining if we need to get additional imaging before sending the images to specialists for analysis. Please pray that the specialists would find something, and that it is treatable.
Things have been stable at home. The kids are in summer camp and having a good time. I'm getting a bit more time to focus on my day job and am getting good sleep. We're experiencing the Valley heat now and have started to use the pool.
Camille's symptoms are similar to before.
Summary of symptoms/status:
Emotional: There are many periods of sadness, of course. She wants so badly to not be where she is. In spite of that, she seems to be enduring very well, though sometimes it is hard to tell because she cannot communicate much, and she is trying to hold back crying, etc, for fear that it will cause her symptoms to worsen.
Spiritual: Her faith in God is still there and she so looks forward to when she will have perfect peace and joy in his presence.
Speaking: Still unable to speak above a faint whisper, but she has been whispering more than she was before (previously 100, and now 300 words per day, I estimate), which I'm grateful for.
Reading: Unable to read more than a sentence or two without feeling pain. We are hoping this improves.
Listening: She still wears her earplugs and earmuffs when others are in the house, but it seems to me that she is able to handle more noise than she used to. Hopefully that continues.
Writing: She is able to write short sentences as long as she does not look at what she is writing, and this has helped her communication w/ me.
Typing: She can type a small number of sentences daily (she does not look at what she is typing) and we are hoping her capacity can increase.
Mobility: She can get to the bathroom on her own and take an infrequent, brief, shower on her own. She has also stepped outside our bedroom into the backyard a few times and sat in the chair there.
Visual Processing of Movement: She hasn't tried to watch any videos. We suspect she wouldn't handle it, given she can't read.
Sleep: Lots of sleep and sleeping well. Probably sleeps 10-11 hours at night and then on and off naps during the day. She seems to be sleeping more during the day than before.
Cognitive: She's at 100%, which in some ways is unfortunate given her other symptoms.
Pain: Thankfully, essentially no physical pain other than some occasional headaches.
Misc: She has been able to do 30-60 seconds of drawing without her symptoms getting worse.
We are hoping that she can slowly increase her capacity over time. And of course are still praying for a full recovery, as well.
Treatment Status: She is still taking the Klonopin and oxaloacetate. Neither is having a significant effect. It's not clear if they are having a minor effect, or if her slight change in symptoms is coincidental. We might try the low dose naltrexone next.
ME/CFS Resource:
TED talk from Jen Brea about having a disease that is hard to diagnose (17m)
Note from Camille:
She typed this over the course of 7 days or so. Also, I passed this text into an LLM to clean it up and the conversation title it was given was "Faith in Suffering's Light". Quite poetic!
"To be known, seen, and understood are core desires of the human heart. Yet, I find myself with a confounding illness that keeps me isolated, barely sharing life with my most beloved. I am in deep waters with layers of pain that most could not imagine. I have asked God in a guttural cry of my soul what it truly means that He is with me always, and that His grace is sufficient...because on some days it doesn't feel like enough.
As my suffering has turned from days to weeks to months, He has abundantly answered that prayer with account after account after account. Showing me in detail His tenderness, His closeness, His love; granting me a strength and endurance I do not comprehend. This is one of the great mysteries of God, that He can use our suffering to produce beautiful things. To say I do not like my circumstances would be a wild understatement, however, the paradox of all the good that is coming out of it is invaluable.
Here are my earnest prayers right now:
That Jesus would stay my vision through it all
I can get out of this acute phase and into full recovery
That I would enjoy my victories
That God would continue to sustain Chris, provide rest, and give him wisdom with all he is carrying (He is doing an amazing job, btw)
That God would restore what has been lost, especially with my children, nephew, and niece
Now on to something lighter. Each day I try to think of good memories to keep my spirit lifted. Here are a few. Enjoy!
Remember that time:
Your hair caught on fire on your first date with Chris
When you threw a cheese party for Chris and he ate an enormous amount of cheese (not surprising). Well, the next day that cheese was still dwelling in his belly, and after a large peach pleasure from Jamba Juice, he threw everything up! (Again, not surprising :) )
All the times you've laughed so hard you cried with Alex Douziech
When you silently farted and blamed it on Jade when she was a baby, and none were the wiser :) (unashamed, and I'd do it again!)
Finally, thank you for all your prayers, messages, love, and support! They have clearly carried us through!!! Keep them coming. I desperately miss you all and love you. I leave you with my current meditation, Psalm 139:1-14.
From the center of my heart, Camille”
Psalm 139:1-14:
O Lord, you have searched me and known me!
You know when I sit down and when I rise up;
you discern my thoughts from afar.
You search out my path and my lying down
and are acquainted with all my ways.
Even before a word is on my tongue,
behold, O Lord, you know it altogether.
You hem me in, behind and before,
and lay your hand upon me.
Such knowledge is too wonderful for me;
it is high; I cannot attain it.
Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, Surely the darkness shall cover me,
and the light about me be night,
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
Photos:
Indi and I went to the LA Pet Fair. One of her highlights was getting to hold and hug a large cockatoo. Animals and soft things are two of her favorite things. Why not both at once?!
Asher celebrated his 8th birthday at Chuck E Cheese, which is actually brighter and cleaner than I remember as a child. He enjoyed the games but might have been too old for Chuck. He was very awkward during this photo op, and I don't blame him, but we appreciated that he tried to give a good smile to the camera.
Jade couldn't get enough of the giant rodent. She kept following him when he would leave the room.
