THIS IS MY STORY . . .

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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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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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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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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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