THIS IS MY STORY . . .

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Nov 2, 2019
Hey friends,   Just wanted to check in with a medical update.  Thank you so much for your continued prayers for me!  I’m so grateful.  The past few months have been a little rough since I last posted, and I’ve had to just take it one day at a time and lean on the Lord for strength.   At the end of July, I doubled the dosage of one of my nerve pain medications because the small fiber neuropathic pain in my hands and especially in both feet/legs has been so very bad. :’(  Doubling the dose helped the pain somewhat (a little relief was better than nothing), but [...]
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Sep 15, 2019
* I shared this on Facebook and Instagram but wanted to post it on my blog as well since some of you here aren’t on social media. 💚 *   I originally had the background of this in blue, but then I remembered that today starts Mitochondrial Disease Awareness Week 2019!  So I of course had to change it to green. 😉  You know how diseases have a specific color/ribbon (gold is for childhood cancer, etc.)?  Well, green is for mito. 💚💚   To bring more awareness, I just wanted to share a little about how Mitochondrial DNA Depletion Syndrome affects me which is the [...]
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Aug 16, 2019
Hey friends,   First of all, I’m sorry it’s been so long again since I last blogged. :(  Last month, I had my mitochondrial appointment in San Diego—traveling and the trip in general was hard physically (more details below), so when we got home, I had terrible nystagmus and other rough mito symptoms.  And then, 2 weeks after that, I had an appointment with my pain doctor in Seattle.  So it’s been pretty busy!   I also never mentioned here that I got a little job in January.  I am a hand lettering artist with a company called Punkpost (you can look at their [...]
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Jun 8, 2019
Hey friends,   So hard to believe we’re already halfway through the year! 🤯   A lot has happened medically since I last blogged, so here’s a little update...  It’s been pretty rough lately. 🙁  So I just wanted to thank you for continuing to pray for me.  Your prayers definitely keep me going. 💚   About 2 months ago, I got diagnosed with hypoparathyroidism which can also occur with mitochondrial disease. 😔  I’ve been experiencing numerous symptoms—there aren’t really any good treatments for it, so I have to go back and see my [...]
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Mar 25, 2019
Hey friends,   It’s been almost 3 whole months since I last blogged.  SO much has happened. :(   This will be incredibly long, but I just want to document everything so that I don’t forget..   On January 25th, I came down with a scratchy throat and congestion.  I thought it was turning into a cold, and I was a little bummed since it’s always harder for me to recover from sickness.   Well, Sunday evening (the 27th), I suddenly started experiencing a fever, chills, severe low back pain, high heart rate, and more.   Because I have a [...]
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Jan 3, 2019
Dear friends,   As I look back on 2018, it brings back so many emotions and memories....  But, I see God’s faithful hand throughout all of it once again.   There were many joyous and happy times....like when my family and I were able to spend 10 amazing days at Disney World/Universal Studios Orlando in February (a very, very special gift from some dear friends).  It was such a memorable trip.     But less than 6 months after that, I experienced one of the hardest things I’ve ever gone through—my body going into septic [...]
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Nov 12, 2018
Hey friends,   It’s been exactly 2 whole months since I last posted---I’m sorry I haven’t kept you in the loop lately!   In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood).  My central line site was really tender and oozing a little.  So my GI specialist quickly started me on a 10-day course of Doxycycline (a very strong antibiotic I’ve never taken before).   Well, 2 or 3 days after I started the antibiotic, I came down with a cold (an antibiotic side effect that can happen).  It took me more than 16 [...]
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Sep 12, 2018
Hey friends,   It's been more than a month since I last posted....and sometimes, no news DOESN'T mean good news. :(  This will be extremely long, but I want to document everything to remember....so here goes!   About 24 hours after my hip labral repair surgery on August 10th, I went into septic shock (there are 3 types of sepsis: sepsis which I’ve had twice, severe sepsis, and septic shock).  Everything happened SO fast, and it was so scary and tramautic to experience. :'(  The Rapid Response team was called because my blood pressure got dangerously low, I had a [...]
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Jul 25, 2018
Hey friends,   I’m sorry it’s taken me so long to write an update on how my neurometabolic appointment in San Diego went!   Been trying to pull all my thoughts together on what we learned at the appointment.   After updating my mito dr. on all that’s happened since I last saw him, he is thinking more and more that the POLG gene variant that was found in my whole exome sequencing is the likely culprit that’s causing my mitochondrial DNA depletion.   According to the NIH genetic reference site, POLG “is a DNA polymerase, which is a type of [...]
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Jul 2, 2018
Hey friends,   I got my MRI arthrogram results, and it shows that I do have a right hip labral tear. :(  So now I’m waiting to hear from the surgery scheduler to schedule orthopedic hip surgery.  Have to get insurance authorization first.  Can’t believe I have to go through the same process once again—-hip surgery was incredibly rough.... :(  I couldn’t bear weight on my affected leg for 2+ weeks, I had to use crutches, physical therapy twice a week was so very intense to try and prevent scar tissue from forming in the joint, and so much more...   Once I do [...]
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