THIS IS MY STORY . . .

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Dec 31, 2020

Dear friends,

 

First off, I can’t believe I was able to write this on time, unlike the previous few years!! 😉

 

Secondly, this past year has been full of hard change—not just for me but for everyone.

 

In the middle of January, I had foot surgery to remove a vascular malformation that I was born with (I had it removed in 2010, but it grew back because it’s genetic).  Since it was on the bottom of my right foot, it caused a lot of pain to walk.

 

A week later after surgery, I noticed that the central line in my chest had a hole in it.  Because of my renal magnesium wasting (my kidneys can’t hold on to magnesium due to the mitochondrial disease), I require daily IV infusions.  So, just 2 weeks after the foot surgery, I had surgery to pull out my old central line and place a new one.

 

Soon after that, I caught C-DIFF (an infection caused by a toxin-producing bacteria in the GI tract).  It happens often in immunocompromised patients who were in the hospital and had strong doses of IV antibiotics for surgery (which definitely explains why I caught it!).

 

I was in severe pain all over (neck, chest, and foot from the 2 surgeries and my abdomen from the colitis caused by the infection).  I was constantly in tears because it was so hard to experience all this on top of my daily chronic pain and everyday mitochondrial symptoms. :’(

 

The pandemic started the next month, and you know what happened then.  Not much was known about Covid, so state lockdowns began.  Everyone had to start wearing masks.  My phsyical therapy stopped for several weeks, and doctors began doing “virtual” appointments.

 

The next month or so, I suddenly started experiencing severe, unrelenting muscle spasms in my back.  I’ve never experienced anything like this. 🙁  It’s hard to explain what they’re like.  My back muscles are rigid and cause so much pain.  I still have them to this day, and we now know this is caused by my Mitochondrial DNA Depletion Syndrome.  My new neurologist in Seattle said he sees this often in neuromuscular diseases.  My orthopedic specialist and my pain drs. started me on a medication called Baclofen.  I’m thankful it helps somewhat, but it does cause side effects, especially blurry vision.

 

In August, I had a bad “mito crash” and was hospitalized for 10 days.  We think it happened due to doing too many activities that require a lot of energy (in addition, I had a very early virtual appointment with my San Diego mito specialist and had to wake up about 5 hours earlier than my normal).  We also think it’s because I had those 2 surgeries so close to each other (both were under general anesthesia which is always difficult for mito patients).  That and the C-DIFF infection was really hard on my body.

 

Anyways, that hospital stay/mito crash (which included a scary anaphylactic reaction to an IV medication) was so hard to go through physically.  And, it’s hard to believe, but I’m still recovering from it. 😔   Still doing physical therapy and occupational hand therapy for the muscle weakness.  I actually sprained my left thumb last week from the weakness and now have to wear a hand splint that my hand therapist made for me on Tuesday.  You never realize how much you use your thumb until you can’t use it anymore. 🥺

 

In November, I had my one year follow-up with my neuro-ophthalmologist at OHSU.  I have an eye disorder from the mitochondrial disease called Progressive External Ophthalmoplegia which is basically paralysis of the external eye muscles (the ones that help your eyes to move).  She noticed that both of my eyes can’t look to the left or downwards (it used to just be the left eye). 😢  I’ve been noticing lately that my eyes can’t move those directions (I don’t think people would notice it if I didn’t tell them).  But this news was really hard to hear, and I’m scared that I’ll lose even more movement (like looking to the right) down the road. 😔

 

So, as you can see, a lot has changed physically.  And so much else has happened on top of that—the pandemic….racial injustices and division in the U.S….elections….fires in different states….and much more.

 

But, do you know what (more specifically, who) hasn’t changed in the midst of all that?!  Jesus.  He is the same yesterday, today, and forever.  His promises haven’t changed and neither has his character. ❤️  That’s what I’ve been clinging to this very hard past year.  And I hope you’ll hold on to that truth with me as we head into 2021, another year of unknown.

 

Happy New Year, friends.  I love you and am so thankful for your prayers these last 12 months!! ❤️  May we all keep trusting in God and His faithfulness no matter what happens!

 

P.S. Do you want to hear some fun/good things that happened this past year?? ☺️

 

1. Even though it was challenging because of my eye paralysis, I was able to read 25 books this year!

 

2. I started learning Italian when the pandemic began.  Still going strong! 😉  A dream of mine is to visit Italy one day! 😊

 

3. I also picked up my violin (after not playing for 8+ years!) and started playing duets with my sister like the good ol’ days!  Yes, I was rusty and it hurt my fingers due to my neuropathy, but the pain got a little better…and just like riding a bicycle, the muscle memory of remembering how to play came back fairly quickly!  We played almost every day, and it was such a gift from the Lord. ☺️🎻  Sadly, I haven’t really been able to play since the hospital stay, but I hope I can soon!

 

4. Last but not least, when in-person church services had to stop due to Covid, my pastor came up with a great idea!  He gave me different verses specifically on trust, and I hand lettered them.  He then sent a verse out each week to the church for families to print and hang up in their home!  Many emailed and told us the verses were a huge blessing and encouragement to them. 💕

Post written byKerissa

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