THIS IS MY STORY . . .

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Oct 30, 2020
Hi, friends,   Wow, it’s been a while!  I just wanted to check in and post a health update. 😊   I’ve been home from the hospital for almost 2 whole months now which is so hard to believe.  Time is definitely flying, but at the same time, my recovery from the mito crash has been slow.   I’m still doing PT and OT at OHSU, and OT is especially hard.  Despite easy exercises that my hand therapist has me do, my arms and hands ache terribly the following day. 🙁  So we have to keep going one step back and try even simpler exercises.  My OT said it [...]
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Sep 22, 2020
Hi friends,   I just had some prayer requests again.  It’s been almost 3 weeks since I came home from the hospital, but I’m still really weak.  So in addition to physical therapy, my doctor referred me to occupational hand therapy at OHSU as it’s so hard to open/hold things, hand letter, etc. (the above piece is an old piece that I lettered more than a year ago).  I want to go back to my “normal” routine, but I’m not able to because of this weakness. 🙁  Please pray that I can get stronger and also be able to find a balance with working hard at therapy but not [...]
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Sep 6, 2020
Friends, could you please pray for me?  After spending 10 long days in the hospital, I was finally able to go home on Friday.   But it’s been very hard—I’m extremely weak all over, and I’ve also been having these horrible episodes where my heart rate shoots up, I feel hot and cold at the same time, have chills and teeth chattering, sweat a ton, and just feel plain awful.  We thinks it’s due to my dysautonomia (autonomic nervous system dysfunction from the mitochondrial disease), and it really scares me. 😔😢   Please pray that I will stay strong and trust in the [...]
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Aug 31, 2020
Dear friends,   Thank you soo much for your texts, prayers, comments, and messages on my last post.  I’m sorry I haven’t been able to respond to them, but please know that I am so encouraged and blessed by you. ❤️  It has been a very hard past 6 days here in the hospital.  Wednesday night around 1:30 AM was so scary.....after I received my first bag of IV N-Acetyl Cysteine (and the nurse was starting the second dose), my heart rate suddenly started pounding/beating super fast, I got very hot/feverish, I felt like I was going to vomit, my chest was really tight, and I [...]
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Aug 26, 2020
Hi friends, just wanted to let you know that the IV D10 infusions that I received for 5 days hasn’t helped this mito crash unfortunately, so my primary care dr. is directly admitting me to the hospital tonight. OHSU is filled to capacity sadly, so I’m getting admitted to Hillsboro Medical Center (which has recently joined/partnered with OHSU).   Here are a few things I’m thankful to the Lord for:   1) HMC has all private rooms so that means I don’t have to share one   2) my primary care dr. is so compassionate and caring and has been trying his hardest [...]
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Aug 19, 2020
Hi, friends,   I haven’t updated in so long, but I could use your prayers. ❤️  I shared this on social media last week but will share here for those who don’t know.  Last Tuesday, I was up all night with horrible, cramping abdominal pain, and I couldn’t fall asleep until after 6 AM. :(   I had an appointment with my GI dr. today, and I told him about what happened.  Given my GI dysmotility, he said it could have been a partial bowel obstruction....  We also discussed something called “intussusception” which is when the GI tract basically “telescopes” into [...]
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Jul 8, 2020
Hi, friends! How has it already been almost 4 months since I last blogged?? 😱   Well, I just wanted to come on here and share a big milestone!  Exactly 10 years ago to this day (July 8, 2010), I had foot surgery to remove a vascular malformation in the bottom of my right foot that I was born with.  17 year old me had no clue what was going to happen following that surgery!     ▫️After that surgery, my foot was never the same, and the pain was unbearable—even bedsheets caused severe pain.  My foot was swollen, turned purple/green, and was so very cold.  My [...]
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Mar 22, 2020
Dear friends,   Just wanted to post a little update.  On Tuesday, I had another DEXA bone scan to check up on the osteopenia, and then I saw my endocrinologist right afterwards.  Sadly, I have more bone loss in my hips.  And because of my hypoparathyroidism (caused by the mitochondrial disease), I’m not able to absorb calcium and vitamin D which is vital for bones.  In other words, the parathyroid gland is what activates vitamin D so that it can be used by the body.  So she ordered a bunch of labs again to check my parathyroid (PTH) level, activated vitamin D level (which is [...]
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Feb 5, 2020
I love this quote above.  I’m so grateful that (1) my suffering is not in vain and also that (2) the Lord is right there with me and for me. ❤️   I just wanted to thank you all for the cards, continued prayers, love, and encouragement these past several days.  It has definitely kept me going.   On top of the 2 surgeries I had on January 15th and 30th, I’ve been experiencing terrible, cramping abdominal pain and distention, and after some tests, I found out this evening that I have a bad infection in my intestines.  This is much more serious/risky than a [...]
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Jan 29, 2020
| The LORD is my shepherd; I shall not want.  He makes me lie down in green pastures.  He leads me beside still waters. - Psalm 23:1-2 |   My second surgery of this month is tomorrow, and we have to BE there at 5 AM. 😟   To be honest, I’m still having a hard time knowing that I have a hole in my central line and that it has to be removed and replaced.  The hole has gotten so large, and I’m scared that bacteria is getting into my blood. 😢  I feel like a ticking time bomb and am bracing myself in case I get sepsis for the 5th time. 🙁   It’s been a rough month [...]
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