THIS IS MY STORY . . .

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Jul 14, 2017
Hi friends,   Wow!!  So much has happened, but I will just go right in and try to tell you everything..   The last week of June, I started feeling very off with episodes of nausea and severe head pain (not my "normal") all over....it even hurt to move my eyes. :(  So on Tuesday the 27th, I decided to check my temperature.  It was 100.9 degrees...I thought that was weird and wondered if it was registering correctly.  The next day, my nurse came over for my weekly blood draw and port needle/dressing site change.  She checked my vitals like she always does.  If I [...]
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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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Jun 1, 2017
Hello friends,   My family and I got back from CA on Sunday.  It was a super quick trip, but we were able to spend a lot of time together which was so special. :)   Our first two evenings there, I suddenly had terrible nausea and severe muscle weakness to the point that I couldn't lift my arms or even get up to brush my teeth.  All I could do was lay on the hotel bed.  It was even so hard to hold my phone up. :(  I couldn't help crying because it was scary.  This didn't happen at all when my parents and I traveled to San Diego in January.  I hate that I'm getting [...]
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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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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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Mar 24, 2017
"Sometimes when we get overwhelmed we forget how big God is." -A.W. Tozer Hey everyone, I'm more than halfway through my 5 weeks of IV iron infusions....but I'm still very exhausted. :(  I woke up at 4 pm today because yesterday was so rough---my blood sodium and magnesium levels were pretty low which made me so weak.  My blood sugar yesterday also dropped.....my hands shook terribly from it, and I was nauseated.  Because I had to wake up early for an appointment, the mito fatigue made me not be able to empty my bladder numerous times throughout the day which was just plain agony.... [...]
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Mar 7, 2017
"The manifestation of God's glory is not limited to miraculous healing. God refused to remove the apostle Paul's "thorn" of suffering so His grace might be seen and proven sufficient.  Though no one would choose hardships, there is no greater proof of God's power and grace than when He gives a person supernatural strength within the pain.  Such men, women, and children experience God's glory in a way which most of us know nothing.  Often this brings greater impact from God than would a miraculous healing!" ~Glory in Suffering   Hello friends,   *This update is [...]
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Feb 22, 2017
"I choose to believe that God is good even though He doesn't heal me.  That when life goes wrong and I suffer, He is with me.  To join with the prophet to sing "He deals wondrously with us!" even when the wonderful life I expected doesn't turn out the way I'd hoped." | He Speaks in the Silence   Hello everyone,   First off, for those who aren't on Facebook, I just want to share with you some good news!!  Last week, I had a repeat venous duplex scan to check up on the DVT (blood clot) that formed in my subclavian and axillary veins.  Well, guess what?!  The [...]
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Feb 7, 2017
Hello friends,   This is super long, so feel free to take a break and come back to this if need be... ;)  I'm sorry it's been so long since I've done a proper update.  Too much has happened. :O  Thank you so much for all your prayers, cards, and emails!  You fill my life with joy time and again.   Mitochondrial Medicine--- On January 17, my parents and I saw my mitochondrial specialist in San Diego.  I have now seen him in clinic 5 times.  At this appointment, he looked over all of my muscle biopsy results (the electron transport chain enzyme [...]
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Jan 23, 2017
"God is closer than your troubles and stronger than your fears." ~Joni Eareckson Tada    Would appreciate your prayers.  Today I was thrown a curve ball, and it hit me in the head...   I had 3 appointments today and am so exhausted!  I have pre-op tomorrow, a home health nurse visit on Wednesday, 2 more appointments on Thursday, and surgery on Friday!   It's been a whirlwind, and this on top of my mito appointment last week (which, btw, I haven't even had time to blog about yet.... :( ) has been rough.  The only thing I can do is take a [...]
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