THIS IS MY STORY . . .

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Oct 27, 2017
Hello friends,   I recently had a long appointment with my urology surgeon at Doernbecher’s.  She explained how this is a very major bladder surgery....and I was so shocked to hear her say that this surgery can last up to 12 hours....(for example, it could start at around 7:30 AM but not end until 7:30 at night)...! :O  It’s so scary to think about, but this surgery is so needed to protect my kidneys/bladder long-term.  I never really described the surgery or even told you what it’s called, but I will try explaining it now.   This surgery is called a [...]
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Oct 5, 2017
Hey friends,   It's been over 3 weeks since I last posted, and again, there's so much to tell and to process. :(   But I will try to post an update for each medical specialty:   Podiatry~ On September the 19th, I had toenail surgery under anesthesia to correct the ingrown toenails.  Everything went well, but my toes are still bleeding/draining even now which means I have to continue soaking my feet in epsom salts.  It also hurts too much to wear shoes.  I have a follow-up with my podiatrist next week to make sure everything is healing [...]
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Sep 13, 2017
Hey friends,   Thank you so much for praying for me and my family.  It means a lot to all of us!  Your love and support really encourages me. :)   My sister had her abdominal CT scan, but aside from some incidental findings, the scan was completely normal and didn't explain her symptoms at all. :(  She saw her GI specialist who recommended an upper GI endoscopy.  That was done on the 11th.  Other than a little tissue inflammation (the dr. biopsied 2 areas, and we're now waiting for results of those), the scope, too, was completely normal and again doesn't explain [...]
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Aug 24, 2017
"If I should say, 'My foot has slipped,' Your loving kindness, O Lord, will hold me up.  When my anxious thoughts multiply within me, Your consolations delight my soul." ~Psalm 94:18-19   Hey friends,   I don't even know where to begin. :(  These last several weeks have been so hard to say the least.  I'll try to explain everything, but just a warning---this is a super long update!!   First off, please please keep my sister in your prayers!  Over the course of 2 1/2 months, my sister has lost 12 pounds, and she continues to lose one pound [...]
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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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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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