Mar 10, 2015

Hey everyone. 🙂

This past Thursday, I had a neuro-urology follow-up.  I tried two different medications for my neurogenic bladder, but both caused awful side effects.  So at this appointment, my doctor discussed what needs to be done.  It looks like I may have to have surgery #9 this year in order to protect my kidneys/bladder.  She recommends this be done sooner rather than later.  It involves neuro-modulation (the spinal cord stimulator that I had implanted for CRPS pain back in 2011 was a neuro-modulation device).  So this surgery is very similar—it corrects the abnormal signals in my brain and helps the sacral nerves in my spinal cord.  We won’t be making the final decision, though, until after I see my mito specialist in June.

My neurology appointment today went well.  I updated her on all that’s been going on.  I’ve been dealing with an increase in shock-like muscle jerks, and she explained that they could be caused by many things, one of them being seizures..  If the movements worsen, she’ll have me get an EEG (electroencephalogram) to try and pin-point where these are coming from.

Regarding the low-grade fevers I experience that come and go, I’m to monitor them.  If they reach beyond 100.1 degrees, I have to let my PCP know to get this investigated further.  My neurologist said fevers can be caused by numerous conditions, and she believes they’re not from dysautonomia.

TPN overall has been a blessing.  But, it also causes something called fluid shifts which result in very painful charlie-horses!  I had over 20 long-lasting muscle cramps (sometimes each last up to 10 minutes long) all over my body yesterday.. 🙁  My GI dr. is continually trying to lessen these by adjusting the TPN infusion rates, but lately, this issue seems to be getting worse.  I have another follow-up with him in a couple of weeks.

Yesterday, my pastor shared this passage from 2 Corinthians.  It’s a familiar section of Scripture to many, but hearing it again was so encouraging.  This has been on my heart:

“So [I] do not lose heart.  Though [my] outer self is wasting away, [my] inner self is being renewed day by day.  For this light momentary affliction is preparing for [me] an eternal weight of glory beyond all comparison, as [I] look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal.” ~2 Corinthians 4:16-18

Post written byKerissa

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