THIS IS MY STORY . . .

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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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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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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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Mar 16, 2018
Hello friends,   My family and I recently got back from an amazing vacation in Orlando, Florida!  I shared this on FB, but for those who didn’t know, a very kind friend and his wife wanted me to “make a wish,” so I chose Disney World/Universal Studios since I’ve never been there, and my family and I all had the most wonderful time!!!   The weather was so beautiful, the food was amazing, the parks, rides, and shows were all so very fun, and it was just so nice being able to get away from weekly doctor appointments and all things medical-related.   Anyways, this [...]
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