THIS IS MY STORY . . .

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Jun 16, 2021
  • I lettered this piece a couple years ago and never shared it until now.  I’m so grateful to God that He “does not leave us as we are.”  My earthly body is so broken from disease (more on that below), and to know that Christ will one day give me a new body—what a wonderful promise. ❤️
  • For the past 3ish weeks, I’ve been experiencing lightheadedness along with a severe, persistent headache every single day and night.  It’s been so very hard to go through as none of my pain meds have been helping much.  On top of mitochondrial disease, I have something called Wilson’s Disease which is where an overload of copper builds up in my organs (the brain and liver especially) unless I take a specific medication to block the copper.  Well, there has been a shortage of that med in the US, so I haven’t been able to take it.  We’re not 100% sure this is the cause of my headaches and other neuro symptoms, but it seems most likely as not taking the med could be causing copper to build up in my brain.  My main pharmacy told us the medication I need is still on back order.  But this past week, my parents called numerous pharmacies, and God led us to one that carries it!  So so thankful!  I would appreciate your prayers that this will alleviate my terrible headaches and other symptoms, and if not, that we will be able to pinpoint the cause…It’s just been so horrible. 😔
  • Both of my wrists have been healing pretty well from the surgeries I had in April and May (still doing weekly hand therapy), but something new is going on—there is a painful bump that is growing under my left wrist.  One of my orthopedic specialists at OHSU took a look at it and referred me for a wrist MRI as my ortho hand surgeon is booked out until July 20th.
  • On top of all this, I most likely tore my right hip labrum again (for those who don’t know, I had left hip surgery in 2016 and right hip surgery in 2018 to repair torn hip labrums). 😭  Not sure how it happened this time, but as I get older, I’ve been dealing with more joint issues from Ehlers-Danlos Syndrome (another disorder I’ve had since 2012). 😔  My hip surgeon team ordered a right hip MRI arthrogram to get the ball rolling on whether I’ll need surgery again.
  • In addition, my tongue has been getting weak…I’m not swallowing correctly from the weakness, so my tongue is pushing out my bottom teeth.  I grew up with a class 3 underbite (the most severe class!) and had to get it corrected, so this new problem is not good..  I saw my swallowing doctor, and I thought maybe seeing his swallowing therapists could strengthen my tongue.  But he said that’s the last thing you want to do with mitochondrial disease.  Since I’m deficient in energy, doing swallowing therapy would use up all my strength, and I’d be too exhausted to chew/swallow.  He said there’s nothing we can do about my weak tongue—he was so compassionate in explaining.  He agreed it’s a good plan to see the OHSU dental team to keep my teeth from being pushed out even further…but we’re not even sure if/when I can see them as the board is still reviewing my chart..
  • All my diagnoses (Mitochondrial DNA Depletion Syndrome, Wilson’s Disease, Ehlers-Danlos Syndrome, etc.) do not have cures, so my doctors can only treat symptoms.  Treating symptoms involves A LOT of medications and surgeries. 🙁
  • These different issues happened all at once, and it’s been really rough.  Each new health trial has been a test of faith.  I’m still not able to hand letter, and I miss it soo much. 😭  It just feels like yet another thing I love is gone.  I know it’s temporary, but still..  So I ask myself continually, “What does God want to teach me during this season?”
  • This verse immediately came to my mind from Psalm 37:7–“Be still before the Lord and wait patiently for him.”  Just 2 verses before this one, it says, “Commit your way to the Lord; trust in him, and he will act.”  Being still and waiting patiently before God is trusting in action.
  • As I navigate these new trials, I ask God to give me courage to trust in His plan and this path He has set for me. ❤️

Post written byKerissa

Check out my previous posts below

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April 2021 update ...
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Medical Update ...
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