Progressive weakness 💔

Hi, friends,

It’s been more than a month since I last posted, and I’m sad to say that my symptoms have gotten much worse.

If you missed the update, this new weakness and pain put a lot of stress on my body, to the point that I went into another rough mitochondrial crash. The week before Thanksgiving, I was directly admitted to the hospital for 7 days due to nausea, vomiting, increased pain, nystagmus, very droopy eyelids, and more..

My “mito crash” symptoms thankfully resolved after receiving continuous IV dextrose and IV levocarnitine. The hospitalist (one of the most compassionate doctors I’ve ever met) also ordered the IV steroid dexamethasone to see if it would help this unusual muscle weakness in my neck, and it did! That was an answer to prayer, but, several days after getting discharged, my neck weakness started worsening again. 😭  We’re not sure if it’s due to the steroid wearing off?

It’s now difficult to lift my head off the pillow when lying down. I truly took for granted how vital the neck muscles are for any type of movement. 🥺  I so miss being at my “normal” baseline and doing basic things like grocery shopping or even vacuuming. I also really miss creating hand lettered art like my old Christmas piece above from 2 years ago. 😢  Are you familiar with the “plank” exercise where you try to lift your abdomen off the ground horizontally as long as possible? Well, I’ve been in so much pain because it feels like I’m always doing a “plank” exercise but with my neck—it constantly aches and burns. 😭

3 of my doctors have all tried to refer me to neuromuscular neurology locally for this new weakness, but the referrals have been rejected each time. No one wants to see me due to my mitochondrial depletion diagnosis. 😢  So I emailed my neuromuscular specialist up at the University of Washington Medical Center and told him all about what’s happened. By God’s grace, my doctor moved up my appointment with him from March ‘25 to January ‘25 which is so caring and compassionate of him, especially since I haven’t seen him in more than 2 years. 🥹  Even more amazing is that he completed a fellowship in neuro-immunology at the NIH and specializes in inflammatory muscle disorders. His expertise in this area is an answer to prayer since my immune system seems to be attacking my muscles (based on a lab result that came back showing antinuclear antibodies in my blood)..

It’s been an incredibly difficult and scary time, and it’s even harder because all this is happening during the holidays. I often feel so alone, having to be bed/recliner-bound and miss out on so much. 🥺

But, despite all this, I’ve seen firsthand how God is still on the throne and is quietly working behind the scenes. Deuteronomy 31:6 and 8 has been an encouragement to me where it says that God goes with me and before me. This path is so painful, but I’m trying to remind myself that it’s not without its purpose. I may not know why this is happening right now, but I do know God is with me and will never leave me nor forsake me. ❤️

My primary care dr. is out on paternity leave until next month, so I saw his colleague yesterday. She was so kind and also very knowledgeable. She ordered the same steroid I received in the hospital to see if it will help this worsening neck weakness. If it is beneficial, she said that’s a great diagnostic tool because it tells us there IS something inflammatory going on in my body to cause this weakness..

Could you please pray that the steroids will help and also hold me over till I see the neurologist next month? If it doesn’t help, she said I may have to get directly admitted again.. 😔

Could you also pray that my neurologist will be able to swiftly diagnose the issue and come up with a plan for treatment?

Pray that I (and my family) will trust the Lord through all this uncertainty and keep an eternal perspective. It’s so hard not to worry, but I’m so grateful for all of your loving prayers and support during this trial, friends.   Merry Christmas! ❤️🎄