THIS IS MY STORY . . .

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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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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 15, 2017
"Everything you face in your life and overcome with God's strength today prepares you for what will cross your path tomorrow." ~Joni Eareckson Tada   Hello friends,   So hard to believe that it's already the middle of January!  The year started off a little rough---I had a tunneled central line infection which began around January 1st....it was a New Year's present to me....just kidding. ;)  But by God's grace, the bacteria didn't travel to my blood and cause sepsis like last year.  The site, though, was pretty tender and starting to ooze.  My GI dr. [...]
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Dec 7, 2016
Hey friends,   Just a short update.  Since the day after Thanksgiving, I've been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue.  The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my throat (basically "strep," but caused by a different bacteria...not the streptococcal bacteria).  He said I'm immunocompromised....this is because of mito. :(  So he prescribed a week's worth of antibiotics and codeine cough syrup.  Still not feeling any better yet, but it [...]
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Oct 26, 2016
"Joy is not necessarily the absence of suffering.  It is the presence of God." ~Sam Storms     Last week, I threw up a ton again, and it never gets easier. :(  We don't know what caused it this time...but my GI dr. thinks these vomiting episodes are from my gastroparesis/intestinal dysmotility.     My feet have been burning horribly lately.  I don't know if the nerve pain is getting exacerbated by the change in weather or what.  My pain dr. did switch up one of my medications a little while ago, so it could be because that is not at a [...]
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Aug 30, 2016
Hello friends. :)   I just wanted to say a huge thank-you for all of your prayers, cards, flowers, and encouragement!  I'm so thankful for all of you.  You guys brighten up my life.   I'm sorry it's been almost a month since I last blogged.  Post-op recovery from my hip surgery and muscle biopsy has been extremely rough, and I've had to literally draw all of my strength (physically, mentally, and spiritually) from the Lord!  This month of August, I had 18 appointments on top of surgery and hospital stays.  But the Lord is full of grace, and He sustained me through [...]
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May 20, 2016
I'm sitting here in my naturopathic physician's clinic, receiving IV alpha lipoic acid which is what my pain dr. and mito specialist recommended.  So I thought I'd post a short update. :)  This is my third time here....last week, the ND gave me IV glutathione with taurine and B12.  But so far, I haven't noticed any benefit..  It's a blessing that this dr. is so close to our home. :)  Not sure how often I'll be able to see him because it's very expensive.  I asked him if he's had any mitochondrial disease patients, and he said no.  He does know about it and how bad it [...]
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Apr 28, 2016
Hello friends,   Last week, I saw my general surgeon who changed my jejunostomy feeding tube to a new one.  The replacement was so painful, and it's done while you're awake!  Basically, the doctors pull the old tube out of the stoma (hole) in my small intestine and stuff a new one in. ;)  Glad that's over!  My feeding tube is nice and new now. :)  They didn't have my tube size in stock, so we decided to try a smaller size....and it's soo much better!  The raw skin around my tube site is now healing which is a huge blessing!   All the iron labs that my GI [...]
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