THIS IS MY STORY . . .

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Feb 22, 2017

“I choose to believe that God is good even though He doesn’t heal me.  That when life goes wrong and I suffer, He is with me.  To join with the prophet to sing “He deals wondrously with us!” even when the wonderful life I expected doesn’t turn out the way I’d hoped.” |

He Speaks in the Silence

 

Hello everyone,

 

First off, for those who aren’t on Facebook, I just want to share with you some good news!!  Last week, I had a repeat venous duplex scan to check up on the DVT (blood clot) that formed in my subclavian and axillary veins.  Well, guess what?!  The clot is completely gone!!  Isn’t that amazing?? 🙂 🙂 🙂  All the glory goes to God!  Thank you all for praying for me during these last few weeks.  I’m blessed to have an army of prayer warriors by my side!

 

Last Thursday, I had a post-op surgery appointment.  Unfortunately, my jejunostomy feeding tube that was replaced while I was in the O.R. for my port surgery a few weeks ago was not the correct size. 🙁  That is, they got the diameter correct but not length. *sigh*  So at this post-op appointment, the surgery resident replaced the feeding tube, and I had to be completely awake for it without any numbing medication. :'(  The procedure was extremely painful because my skin around the stoma (hole) was all raw and inflamed from the tube being the wrong size.  It was an 11 on a pain scale of 1-10.  Seriously! 🙁  The tube is about a foot long, and I couldn’t breath because I could feel the doctor push the tube in inch by inch.  I’ve experienced a lot of painful procedures, but I think this tops it all.  I don’t know how I’ll bear another tube change in 9 or so months….I dread the thought of it!!  But I will try not to worry about the future..  I am reminded that God’s grace is sufficient.  It is enough.  For today….for the future.

 

Since November, I’ve had a lingering cough that I just can’t seem to kick.  If I have a lot of doctor appointments and I need to wake up “early,” my cough worsens when I’m tired and I have to use my inhaler more often.  Well in December, the cough was especially bad, and I started experiencing terrible upper right back pain then.  It hurt to breathe even!  And my physical therapists weren’t sure what was going on.  The pain was way worse than a muscle strain.  But the CT scan I had for that blood clot showed what was wrong.  It turns out that I fractured a rib….just from coughing! 🙁  Wasn’t expecting that!  I’m glad for answers, though.  Based on the images, my rib is still healing..  My physical therapist said my bone mineral density is weak because of all my conditions..

 

We’re not sure what’s going on now, but I haven’t been feeling well. 🙁  I get a very achy back that comes and goes, and it worsens to the point that I need one of my strong pain medications.  My blood potassium level has also been lower than my normal, so I told my nephrologist.  I believe she’s going to add more potassium to my daily IV magnesium infusion bags to see if that helps.  On top of that, I’ve had a severe, pounding headache the last few days with nausea, and we don’t know if this is all related with the back pain and potassium issues..

 

Or is the headache from my anemia, the nausea from all the pain, and the achy back from the low potassium?  Or, is my body just now having a rough time recovering from all that’s happened the last several weeks (DVT, port surgery, San Diego trip, feeding tube replacement, broken rib, cough, etc.) and I’m going through a “mito crash”?  I almost had to go to the ER yesterday…I felt so horrible, and I still do this evening. 🙁  But I am seeing my PCP (my main PCP is on maternity leave) in evening clinic tomorrow, and I pray he can help..  Trying my hardest to avoid the ER!

 

Continuing to take it one day at a time.  I recently read something really encouraging in Joni Eareckson Tada’s newest devotional A Spectacle of Glory—“I may walk in pain, but I also walk in grace.”  So very true, and I remind myself of this often. 🙂  She also writes, “For all the many times [the apostle Paul] was distressed by his weakness, he had the supporting grace of Christ…..grace always, always meets us at our point of pain!”

Post written byKerissa

Check out my previous posts below

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2019 Mitochondrial disease appointment ...
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Hard battle. ...
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Reflections on this past year 2018 ...

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