THIS IS MY STORY . . .

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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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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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Apr 26, 2017
"It is a glorious thing to know that your Father God makes no mistakes in directing or permitting that which crosses the path of your life.  It is the glory of God to conceal a matter.  It is our glory to trust Him, no matter what." ~Joni Eareckson Tada    Hello friends,   I'm so sorry it's been more than a month since I last blogged! :(  To be honest, the last several weeks have been very rough....   Long story short, I had yet another ER visit/hospital stay at the beginning of April because of issues with my port, neurogenic bladder [...]
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