THIS IS MY STORY . . .

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Jan 14, 2020
Hi, friends!   My surgery (to replace my j-tube and also remove the vascular malformation in the bottom of my right foot) was originally scheduled to be done outpatient at the O.R. in the OHSU Center for Health and Healing at the South Waterfront.   But, I saw the “pre-op medicine” doctor last week, and after the appointment, she got in touch with the head of Anesthesiology and my surgeon.  Because I went into septic shock and had to go to ICU about 12 hours after my last surgery in 2018, they all agreed that this surgery should be done at the South O.R. up at the [...]
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Jan 3, 2020
“Joy comes from having a relationship with the unchanging God and transcends any trial we can face on this earth” - Jeremy Camp Dear friends,   I’m a few days late on this annual “reflections” blogpost because I haven’t been feeling my “normal” (more on that at the end of this post).   Anyways, 2019 is now over, and along with that, another decade has passed.  I have so many mixed emotions about this.   I’ve realized that it’s now been a whole decade since all of my health issues started. This recap is going to be a little long [...]
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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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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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