THIS IS MY STORY . . .

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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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Jun 6, 2018
“When the storms of life hit, they almost always appear stronger to us than God’s word.  It is crucial for us to remember that our perceptions can be deceptive.  When circumstances strike fear into our hearts, the questions we must always ask ourselves is, where is your faith?  What God wants is for you to trust what He says over what you see.” ~unknown (I took a screenshot of this quote months ago and can’t remember who wrote it.. 😅)   Hey friends,   On June 4th, 2011, I graduated from high school.  That was seven years ago.  7 whole years. :(  It's been [...]
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May 1, 2018
Hey friends,   I’m sorry I haven’t posted in a while!  It’s been a pretty rough two months.. :(   The last half of March, I started experiencing severe, cramping abdominal pain, terrible nausea, distention (I looked pregnant! :( )....and just felt really unwell.  The abdominal pain started happening every few days to every single day.  Pretty soon it hurt terribly to eat (much worse than the usual pain from gastroparesis) and drink water. :(  Even pushing meds through my jejunostomy tube caused pain right away.  I lost weight and felt really weak.  Everything [...]
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