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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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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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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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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Dec 5, 2017
“Instead of a river, God often gives us a brook which may be running today and dried up tomorrow.  Why?  To teach us not to rest in our blessings, but in the blesser Himself.” -AW Pink   Hey friends,   I’m so sorry that I haven’t blogged since October!! :(  November was a pretty busy month with Thanksgiving and other things going on, and I was waiting and waiting to hear “the plan” from my surgeon..   Well, I finally heard confirmation from my surgeon, and the big news is, my major bladder/abdominal surgery has been postponed!  I wrote in my [...]
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Aug 9, 2017
"But I will call on God, and the Lord will rescue me.  Morning, noon, and night, I cry out in my distress, and the Lord hears my voice.  He ransoms me and keeps me safe from the battle waged against me..." Psalm 55:16-18a   Hello friends,   Wow, where has the time gone??  I haven't blogged here in almost a whole month!   It's been a busy summer as my parents and I recently got back from Seattle.  They had a wedding to go to, so I wanted to come along so that I could see my pain dr. at UWMC. :)   Oh it was so good to see him! [...]
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Jun 21, 2017
"I have learned that faith means trusting in advance what will only make sense in reverse." ~Philip Yancey Hello friends,   Oh, where to begin??   On June 2nd, I decided to try a little more of my medical cannabis chocolate because I had a pounding migraine and my strong pain med wasn't helping.  Well, I had a terrible reaction to it which landed me in the ER by ambulance.  I experienced a pounding, high heart rate, muscle jerking all over (I was afraid all the jerking was going to cause a seizure), extreme muscle weakness, and drowsiness (so bad that I had to try my [...]
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May 18, 2017
Hello friends,   Last week, I had a follow-up with my neurologist.  I wasn't expecting it, but she had a serious talk with me and my mom...  She told me that my mitochondrial disease is progressing, and because there's no cure and no good treatments (except antioxidants, symptom management, etc.), she said there's not much we can do except "keep me comfortable."  I know I've been getting worse medically....I wasn't this bad 2 years ago. :(  But to hear my doctor tell me this was really hard, and I'm still processing all of what she said.  No 24 year old should have to hear [...]
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