THIS IS MY STORY . . .

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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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Jan 26, 2016
Hey friends, Just wanted to share some news---my liver enzymes dropped and are now in the normal range!  My hepatologist thinks I had autoimmune hepatitis which resolved quickly (must be because of all your prayers! :)  Thank you, Lord!!  He really does hear our prayers!  My magnesium level is still not where we would like it to be, but my hepatologist (he's my GI dr. for now until my main GI specialist returns from out of the country) added even more magnesium and 2 different types of potassium to my daily IV fluids which I now receive for 3 hours. He also called me last week and [...]
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Jan 18, 2016
Hey friends, These past two weeks have been super rough....still not feeling well at all. :(  We found out 2 weeks ago that my liver function blood test results quadrupled suddenly which indicates liver damage/inflammation.  The results have improved since then, but one of the liver enzymes is still higher than normal. I saw my GI specialist last Tuesday, and he expressed that he's worried about down the road.  You never want to hear a doctor tell you that. :(  I've been on IV nutrition for more than a year now, and that definitely doesn't help things liver-wise.  I'm still [...]
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Jan 9, 2016
All last week, I wasn't feeling my normal and just felt "off."  I kept losing my balance and had nystagmus/dizziness.  This past Saturday, I was feeling so bad with horrible body aches, headache, and nausea, so I ended up going to the ER to make sure I didn't have a central line infection. The ER docs followed my mitochondrial specialist's ER protocol letter, so I received through my central line a dose of IV carnitine and more than 3 liters of continuous D10 with sodium chloride and potassium.  I also had a ton of labs drawn.  It turns out I was nearing a metabolic alkalosis state [...]
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Jan 1, 2016
This year alone, I had a total of: 51 doctor appointments 21 physical therapy and occupational therapy appointments 5 MRIs (brain, cervical spine, thoracic spine, foot, and heart) 2 more surgeries (central line placement and liver biopsy) which makes a total of 9 so far 2 overnight hospital admissions 1 blood clot in my right cephalic vein 14 days of blood thinner injections 52 home care nurse visits 52 central line dressing site changes 3 sleep studies which showed worsening sleep [...]
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