New Struggles

"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world."

-John 16:33-

Dear friends,

This was a hard post to write. I had 2 rough appointments recently…both just a few days apart—one with my primary care physician and the other with my neuromuscular neurologist. I broke down and cried a lot at each of them. 😭 It doesn’t seem like I’m improving with time, so my PCP recommended that I be seen at the center for complex diseases in Seattle, but we found out they don’t take insurance (in addition, the very specialized autonomic neurologist also in Seattle that one of my other doctors referred me to doesn't take insurance either).. 😔

My doctor always shows such compassion (very thankful for him!!), and he explained that something needs to be done because I’m continuing to struggle even more. I’m starting to experience brain fog which has been difficult. If I’m searching something online, I suddenly forget what I was looking for. More than a few times now, I said something to my family, and they told me I already brought “that” up. 🥺

My elbow joints have been so achy and painful lately. We don’t know if this is related to a slowly developing issue—the rheumatologist said sometimes symptoms can gradually develop before it becomes a full-on autoimmune disorder, and she said to watch and pay attention to any new symptoms.. I still have the second opinion with a different rheumatologist in late June..

On top of all this, I began experiencing terrible muscle spasms in my low back muscles which wake me up in the morning. 😔 The neurologist said this is called “spasticity” and is a muscle control disorder characterized by tight or stiff muscles and an inability to control those muscles. I’m not able to get quality rest at night due to these muscle spasms as well as the frequent central apnea episodes that occur (detailed in a previous blog post). 😞

My nystagmus has also been simply horrible and always occurs now with mild activity (it used to just happen with sepsis or when a “mito crash” was brewing). If you are curious what nystagmus is: it’s like seeing the world through a very shaky camera lens, and your eyeballs oscillate back and forth horizontally. The brain fog and nystagmus is happening because my brain is not getting enough energy due to the mitochondrial depletion. The pain in my legs has also been very hard to deal with (especially at night), and this, too, is caused by my nerves/muscles not getting sufficient energy. 😢

We’re trying to manage these difficult symptoms with medications and all sorts of supplements, but it’s still so rough. 😭

My neurologist said degeneration is occurring. Had a difficult discussion with him about what to do. I already receive a 4 hour infusion 5 days a week, but he wants me to receive another half a liter of IV dextrose and run it quickly over 30 minutes.. He hoped to add a specific amino acid to each bag, but we found out my infusion company can't supply it or even order it which was so disappointing.

Very weary and exhausted fighting this mitochondrial depletion syndrome day after day with no reprieve. 🥺 This July will mark 15 years of fighting mito and all my other diagnoses. Please pray for supernatural endurance to keep persevering. Pray that I will lean on the Lord, draw strength from him, and not lose heart. I know this is just a rough season I’m in which will hopefully pass, but it’s hard while in the thick of it. Trying to remember that the Lord carried me through 15 long years, and he will do the same for the next 15.. ❤️

This passage from 2 Corinthians comes to mind, and I really resonate with it:

“For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again.” -2 Corinthians 1:8-10

So thankful Jesus is with me in the midst of all this suffering. Could you please also pray hard that the Undiagnosed Diseases Network through Harvard will accept my complex case and work to find the gene mutation responsible for this worsening mitochondrial depletion? If a mutation is found, then I could potentially be enrolled in clinical trials! The UDN has a 40% acceptance rate, and I should hear the final decision in 2-3 months..

Thank you so much for your continued love and prayers, friends. 💚