THIS IS MY STORY . . .

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Jun 29, 2016
Hello friends!   We are home!   My parents and I actually got home on Monday the 20th, and I'm just now blogging. :/  The United Mitochondrial Disease Foundation symposium in Seattle was an amazing first time experience!  Yes, it was rough as well because I hardly got any sleep which in turn made all my mito symptoms worse...but, the conference was hopeful and encouraging, too.   I wish next year's was going to be on the west coast again, but it's actually going to be held in Virginia!   I could say loads about this year's conference and take up all your time, but [...]
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Jun 7, 2016
Last Thursday, I had my hip MRI arthrogram.  Before the actual scan, I was taken to Radiology, and the doctor injected a combination of saline, adrenaline, two types of contrast, and long-acting lidocaine all into my left hip joint.  The needle was very long! :O  They used long-acting lidocaine because they said that contrast really upsets the hip joint a couple days after the MRI.  The numbing medication took away my hip pain completely which was so nice. :)  Sadly, after it wore off on Friday, the pain has since doubled, and I can't move my leg well at all. :/   Yesterday, [...]
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May 31, 2016
Well, guys, I beat my record for the most appointments in one month.  I ended up having a total of 19 appointments this month, not 16 like I thought it'd be..  This month wore me out.. :(   On June 4, 2011, I graduated from high school.  June 4, 2016 is just around the corner.  It will be 5 whole years since I graduated...  5 years.  It's hard.  I'm still doing the same thing---seeing doctors, going to weekly appointments and physical therapy, taking numerous medications and supplements, sleeping 16-18 hours a day, hooking up to IV fluids every day and IV nutrition every [...]
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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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May 9, 2016
Would appreciate your prayers!  I know I've said this before, but this journey just gets harder and harder...  I often wonder what will happen next, but I'm reminded to take each day as it comes.  The Lord is full of grace, and I will lean on Him.   Ever since February, I've been dealing with sharp hip pain.  My left leg gets stuck and doesn't move well because of this hip issue.  Nothing is helping...not even continuous physical therapy. :(  I followed up with my Orthopaedics specialist this morning, and he now thinks I likely have a torn labrum in my hip. :(  I have to [...]
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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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Apr 6, 2016
Last Wednesday, I had a follow-up with my pain dr. The IV ketamine I was able to receive in the hospital last month helped the nerve pain so much, but as soon as it was stopped upon discharge, the pain ramped up again. :( Unfortunately, getting IV ketamine in the clinic is not an option currently due to insurance issues, but my pain dr. is working on this! In the meantime, if insurance pre-authorizes it, I will be switching to an even stronger, anti-convulsant pain medication. I'll also be getting another bilateral lumbar sympathetic nerve block which is a procedure where the doctors [...]
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Mar 24, 2016
Hello all, I'm sorry I've been MIA here!  I'll just cut right to the chase. :) On February 26th, I started dealing with vomiting.  We didn't know what was going on, and my GI specialist was unsure if this was due to worsening GI dysmotility. I had 3 more episodes of vomiting and dry heaving, and very early in the morning on March 8th (around 12:00 am), I began experiencing a fever of 101 degrees, terrible low back pain, severe chills, headache, and heart rates over 150 bpm.  I was taken by ambulance to Legacy Emanuel ER because OHSU's ER was filled to the brim, and they couldn't [...]
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Mar 3, 2016
Wow, it's been a whole month since I last posted here.  Did you miss me? ;) February was very rough, and I'm glad I can now look back on it. Here are all the latest appointment updates.  Beware, this is super long!!  If seeing doctors was my full time job, I'd be rich. ;)  For those on facebook who already read my "mito" update, just scroll down to pass that one. :) Mitochondrial medicine (posted Feb. 16th): 1. My hypomagnesemia is related to the mitochondrial disease---a lot of his patients deal with the same thing and need daily IV fluids with magnesium just [...]
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Feb 5, 2016
Hey guys, Just wanted to post a short update for you.  Thank you for continuing to pray for me. :) My magnesium dropped AGAIN even though I'm receiving extra magnesium in my daily IV fluids!  Something's clearly not right. :(  Yesterday, I was given an additional 250 ml bolus of magnesium, so I was on IV fluids for 6 whole hours.  My GI team referred me to OHSU nephrology to make sure I'm not losing Mg through my kidneys..  The clinic already got back, and I'm blessed to be able to see a Portland Monthly "Top Doctor" in nephrology.  My appointment with her is on the [...]
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