Jul 22, 2014

Last week, I had 5 appointments—all at OHSU..  I feel like I live there! lol  But do you want to hear some good news?  Surgery had a cancellation, so I was able to see them this past Wednesday instead of the previously scheduled consult appt. the beginning of August!  All the praise goes to God!  My 6th surgery (jejunostomy feeding tube placement) is now scheduled for Aug. 7th (pre-op is Aug. 5th), just two and a half weeks away!  If all goes well, it will only be a one night stay in the hospital.

I’m glad this surgery is coming soon.  I’m still losing weight again, and on top of all my other GI diagnoses, the general surgeons gave me another diagnosis called Failure to Thrive (FTT).  It’s odd to know I now have that..

The CRPS pain in both of my feet and the muscle biopsy site has been so horrendous.  I haven’t been sleeping well at all, and I often have to keep my feet over the side of my bed because sheets cause pain!  I saw my pain doctor on Thursday, and I’m just so grateful for all that he does to try and lessen CRPS flare-ups.  He wants to do another bilateral lumbar sympathetic nerve block which is scheduled for next Wednesday the 30th.  We discussed the J-tube surgery, too, and his recommendations for pain control during and after the surgery.

Next week, I also have a follow-up with my neuro-ophthalmologist, and my orthopaedic spine dr. wants to see me as well to check up on everything with scoliosis x-rays.

At the recommendations of the mito specialist and my neurologist, I recently started a bunch of high dose antioxidants and supplements—this combination is called a “mito cocktail.” 🙂  Not sure if anything will help, but it’s worth a shot. 🙂

Post written byKerissa

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