Jan 31, 2018

“Faith means believing that God is good.  Even if we can’t see it today, one day we’ll look back and see clearly His sovereignty, goodness, and kindness.”

~Randy Alcorn


Hey friends,


Just checking in with a short update. 🙂


The flu season has been so bad….so other than going to my doctor appointments, I realized I haven’t been “out” since Christmas Day. 🙁  I just can’t get the flu!  It would be really dangerous with mito.  So I’ve just been staying home and hand lettering (my new favorite thing to do! 😉 )….it’s already been 4 months since I started lettering!  It’s sometimes hard to letter with certain brush pens and markers due to nerve pain and muscle weakness, so my occupational hand therapist put padding/foam on some of my pens. 🙂


I saw my nephrologist last month, and my hypomagnesemia is still bad.  It randomly drops really low which causes nystagmus, nausea, and terrible pain in my back on top of my other chronic pain.  Those “episodes” are really hard to experience. 🙁  Other than receiving my continual high doses of IV magnesium every day, there’s nothing else that can help…  Although, my nephrologist did ask if she could share my case to her colleague (this colleague no longer sees patients and only does research now….his main research focus is magnesium transport deficiencies which is what I have!).  I hope and pray he can give her some other treatment recommendations that haven’t been tried.


My right hip has been really bothering me lately, and we’re not sure if my right hip labrum is torn (which is what happened to my left hip in 2016).  So now I have to go through the same process again of seeing my orthopedic surgeon who will most likely order a right hip MRI arthrogram and a diagnostic hip steroid injection.  But, I might not be able to have all of this done until after my major bladder surgery in March…we’ll see what my surgeon says in a couple of weeks.


I’m still having a lot of central apneas even with the new ventilator that I got, so this week, my sleep specialist adjusted the settings once again.  Hopefully that helps!


I can’t believe today is the last day of January! :O

Post written byKerissa

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