Summary and requests for prayer
Hi friends and family. Camille is getting more used to her symptoms (for better or worse!) and is currently experiencing minor improvement, which feels major given how low her 'baseline' is. We are continuing to pursue treatments (there are hundreds of things we could try...) and have some potentially impactful appointments coming up. The kids have started school and work is chugging along for me. We are settling into our new life in the valley!
Prayer requests:
Camille has some upright MRIs coming up, and we are concerned they might drain her too much and cause a 'crash'. Please pray they do not, and please pray the specialists would find a structural issue that is fixable.
Self control for Camille to not do too much now that she is feeling a bit better. This is a common pitfall people encounter, and can cause a setback.
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General update and family status
Camille is 'getting used to' her illness, while not assuming that her symptoms have to stay so severe. She tries to have goals every day and her symptoms have even improved a bit! She's doing an incredible job enduring and has been able to have a bit more interaction w/ the kids than before. The kids and I used to pray w/out Camille at night, and sometimes we now go in and pray w/ her there, and she really likes that, as do I! She has also spent more time snuggling w/ kids one-on-one, which is very special.
The kids had a good summer at camps, swimming, and spending time with their family. Asher and Indi learned how to swim, and Jade has no fear in the water. She's actually sometimes more afraid of walking in the street than swimming, which is comical. They have been able to spend a lot of time w/ their grandparents and some time w/ their cousins too! We went to the beach a bit and they enjoyed that: the water, the sand, and the ice cream! And now school has started again so we're back to a tighter morning schedule and making sure homework (there is very little!) gets done in the evening. Jade is very good at stating facts and Asher and I both see the great humor in it. She should start a social media channel 'Facts By Jade'. It's quite cute. On a more serious note, God has definitely been using this time to sharpen my focus on the hope of the next life. When things are going 'well', it is easy to be content with what I have here. Since things are definitely not going 'well', it has increased my longing for what God has promised is to come for those who love him. So that is one positive thing coming out of this situation!
Summary of symptoms/status
Her symptoms have improved, generally, from where they were a month ago. Instead of being at 2% capacity, she is now at 3%, which is a 50% increase! It's a big win when your capacity is so low. However, symptoms are known to fluctuate so we aren't assuming it's only up from here. But that would be wonderful! To hear why her symptoms have improved, look at the 'Treatment status' section below.
Emotional: While there are still periods of sadness, she seems to be overall in slightly better spirits. She is enduring very well, as she almost always is.
Spiritual: Still loving Jesus and looking forward to being with him. She is praying for the kids and me (and others too, I think!) a lot and has seen God answer some prayers very quickly, which is encouraging.
Speaking: Still speaks almost exclusively in whispers, but they are often not the extremely faint whispers that they were before. She is also whispering more than she was before (probably 300-700 words per day, now). In addition, there have been a few times where her 'real' voice comes out a bit, and that is such a joy to hear. It comes out all squeaky and goes in and out, but it's so great to hear even the little bit that I get to.
Reading: I'm actually not sure of the status. I think it's mainly unchanged: can only read 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, though if it is only me she does not always wear the earmuffs. So she is able to handle more noise than she used to. Hopefully that continues.
Writing: She has not been writing because she is able to speak more, so I don't know!
Phone: Without telling me, she started to reply to some of her text messages (sneaky Camille). That was a bit risky but she seems to be handling it ok. If you were one of the ones who got a response from Camille and not her assistant (me), consider yourself a blessed soul. If you weren't, don't take it personally. 🙂
Typing: She can type a small number of sentences daily (she does not look at what she is typing) and her capacity might be increasing here. I'm not sure.
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 is able to watch a small number of short videos (5-30 seconds) over the course of the week without her symptoms getting worse.
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.
Misc: She has been doing some art. I don't know how long each session is, but I assume it is 30-120 seconds, and once a day max.
Diagnosis and treatment status
Oxaloacetate: she stopped taking this because it appeared to have no effect. This was a bummer, as I had higher hopes for this than any other treatment she's tried so far.
Klonopin: We doubled the dose because the psychiatrist was concerned that she appears to be partially catatonic. Don't worry: she's not! He doesn't know about ME/CFS but we use him to get the Klonopin prescription, and he also can't interview her well over Zoom because she can barely talk. But I figured it would be worth trying doubling the dose to see if it helps w/ her sensory sensitivity. One of the ME/CFS specialists says it can take months for the Klonopin to take effect in terms of sensory sensitivity, which doesn't make sense to me but whatever we'll try it. 😁 It's unclear if the doubling of the dose is what is leading to symptom improvements. I doubt it, but we'll experiment later w/ dose changes to get more data.
Low dose naltrexone: One specialist calls this the 'aspirin of chronic illness'. Camille's symptoms started to improve a bit after starting this (though the doctor said it can sometimes take up to 6 months to take effect, which is quite frustrating...), so maybe this is the reason her symptoms have improved. Or maybe her symptoms have improved 'randomly'. Or due to some other change we can't identify. Or maybe this is a temporary improvement. Or maybe a combination. Isn't chronic complex illness fun!?!?
We are slowly stopping some of the supplements she's taking, to see if they are worth continuing to take.
Camille is going to have a few more MRIs. The last one is in early Oct. Once we have all of them done, I will send the imaging to specialists, as most radiologists cannot detect the issues we're looking for (again, isn't chronic complex illness fun?! 😀). This will hopefully help us figure out if there is a structural issue. Hopefully there is, so we can address it. If not, then at least we can stop putting effort into that diagnosis/treatment path.
We are meeting w/ one of the top specialists in October. I am hoping they can help prioritize diagnosis and treatment steps. This prioritization is very important because there are so many things we could test for and so many treatments to try. This chronic complex illness space is, unsurprisingly, complex! Definitely not cookie cutter "take these two tests and then either this or that treatment" sort of stuff.
ME/CFS Resource
Did you like 'Unbroken' or 'Seabiscuit'? Then oh are you in for a treat! It turns out that their author, Laura Hillenbrand, has had ME/CFS for many years, including when she wrote those books. Encouragingly, her symptoms have improved significantly over the last decade.
She wrote a 20 minute article about her experience w/ ME/CFS: A Sudden Illness. Her symptoms do not match with Camille's except for the debilitating fatigue and the post exertional malaise, which are the hallmark symptoms, but the experience of feeling so unwell, and without answers, depicts the typical ME/CFS experience well. And of course the article is beautifully written, and won some award.
Note From Camille
Camille wrote this note over the course of 2 weeks.
My Earnest Prayers:
Chris would find a new home church/community (miss you CWLA)
The kids would make friends who are good influences
Our family would have strength and rest while they support us
That I would accept each day's capacity and work within that
For joy, peace, and restoration
Thankfulness for all of you and all the prayers being prayed
An Encouragement From my Son
Asher Ransom Morris, my firstborn, my first true love of children, turned 8 this past June. Before his debut I was not the career driven, ambitious type. I wanted to do a good job and go home. Well, after 36 hours of labor Asher was placed on my chest and my heart cracked open to make room for an unimaginable love that flooded me. I had found my ambition, even more so my calling and the world has not been the same since. So you can imagine that his birthday was bittersweet. I could not plan his party or participate but we did exchange snuggles, some tears, and a card I managed to make. At the end of the day I scribbled on a piece of paper "I hope you had a great day, read Psalm 139." He nodded his head with an okay and left the room. Asher and Chris read the Psalm, discussed it, and talked about how God can make good things happen from terrible situations, like my sickness. Asher's reply to this was, "I know something God can do for Mommy, but it's too obvious and God does not do the obvious."
God does not do the obvious; the insight of an 8-year-old. I haven't thought about it in those exact words but it's all over the Bible. Now this doesn't mean He never does what is obvious but His most powerful acts are not the obvious ones. Let me take you through 4 examples.
He uses an elderly couple who are barren to become pregnant in their 90s, making them the Father and Mother of His nation Israel.
He uses a young man who gets sold into slavery BY HIS BROTHERS, then later on wrongfully imprisoned for years, to become the second in command of Egypt. God guides him in this position to help many people during a famine... Including his family. The family's reunification is mega awkward for a hot second, but God restores their relationship through compassion and forgiveness! (Like, seriously! This story is so crazy!!)
God uses a young Jewish woman (who was an orphan btw, no high status here) to become the queen of the nation (Persia) her people are exiled in. She ultimately saves her people from becoming eradicated!
God the Father sends Jesus, God the Son, to live among us (it's already getting wild). He comes humbly as a baby and at age 30, He starts to reveal himself. He does A LOT of teaching and wondrous miracles, both showing his authority and power as God. The people are amazed, they think this must be the one to bring Israel back into power. But they have missed the mark. Instead He gets sent to die a criminal's death on the basis of political pressure. While this innocent Godman is dying a barbaric death, people are shouting, "if you're really the Son of God, come down and save yourself." Ohhh but they have NO IDEA what enduring the cross will do. He breathes His last, and the earth quakes! He has done it, He has paid the ransom for the sins of the world! This is not understood yet, life is quiet and somber for a few days. Then BAM! IN HIS OWN POWER, He comes back to life like a BOSS (WHOOO I AM GETTING HYPED!). He conquers death and sets the world ablaze with His ridiculously amazing love, offering true life, hope, and security with complete love, forgiveness, and satisfaction! This goodness is completely fulfilled in the next life, an eternity with no more pain, tears, sadness, or sickness (buh-bye CFS!), just pure bliss in His glorious presence for those who love/trust Him.
In His most powerful act, God did not do the obvious...
So what great works will He do in our story? Well, for starters, my son has some understanding that God is bigger than all we can think of or see. My husband... oh, I could write pages about my love and how he has served/cared for me and the kids. He has grown into an incredible amount of strength, patience, and compassion in the hardest of times. I hope the kids understand one day his example of sacrificial love. These are just a couple of examples of many that I'm aware of. Perhaps a great work is happening in you right now.....
I may have told Asher to read that Psalm for his benefit, but in return, he really blessed me, reminding me of God's power while we endure. Now that was the sweetest end to his 8th birthday :)
From the center of my heart, Camille
Jade and Mommy hanging out. Left: clown. Right: queen.
The kids committing to a life of adventure and uncertainty together. Jade was a little slow on the uptake.
