Wednesday I received a whole bunch of new samples to test to see if I could get formula and some juice boxes made by Neocate down. I am happy to report that I got 5 boxes down yesterday, with no burning. That's about 240 calories a box, so I was pretty proud of myself. I had acid reflux all last night; I think I drank the last box a little too late in the day. I should be an expert on this stuff when I'm done. :)
I was able to speak with the nutritionist, Beth, yesterday, and told her everything that I experienced since Friday (she's only available Wed-Fri). I really like her, and she was totally understanding. She said the reaction wasn't necessarily a surprise; she had a few other patients that had a bad reaction to the EleCare. She wasn't sure if my inflammation just can't handle the viscosity of the formula at this point (and as I ramped up, my body just started rejecting it), or if was a cross contamination with the latest shipment. Either way, she was grateful to hear from me and we discussed some different options for getting the nutrition in. She wanted me to test the juice boxes and the Neocate Chocolate and give her feedback so we could place a different order. She also said she would help coordinate any disability I needed, as my condition warranted time off work as I was still under major medications and the disease was definitely not under control and I am reacting to nearly everything in my system. She said this is definitely not unusual, and confirmed that I did the right things and contacted the right people. (I think mentally that made me feel better).
I got down a juice box this morning, and a sample of the Neocate Chocolate. I think my mouth is just plain irritated with all the stuff going down, so I feel a little more at ease that this doesn't seem like an allergic reaction. I do think the juice boxes are better able to sit in my stomach, so that may be the best approach at this time. Maybe when I'm feeling better, I'll do the mazes and search word puzzles and matching games on the back of the juice boxes :) This stuff is all for kids that suffer from EoE. It works for me in my small group of EoG patients. Makes me feel like a little kid drinking a little juice box every few hours. It's amazing how perspective can change - these boxes tasted horrible in the hospital, but after so much sweet stuff and the EleCare Vanilla being so strong and the unflavored making me vomit, this doesn't seem so bad. I don't need the lifesaver in my mouth to mask the taste with two flavors; things are getting better and my body seems to be adjusting.
I haven't slept now for 3 nights - I just lay in bed tossing and turning; completely paranoid of every symptom I feel. Weird tingles, numbness, heart palpitations, etc. I'm sure some things are probably just anxiety with trying to get my health under control. I did some work yesterday, and burned out really fast. I think I just have to be more firm and say no to doing anything. I know everyone says I should, but giving that up personally is difficult. I've given up a lot the last month, and am reaching hard to hold on to some consistency. However, I know the alternative of pushing too hard is not good, and I need to stay focused on that.
My goal for today is just to keep hydrated, try to sleep/rest, and get those nutrients in. I'll call Beth back in a bit to get an order placed for more quantity. Mom took Lucy and I this morning to get my echocardiogram done of my heart. Some EoG patients have an autoimmune response (not allergies), and it can attack the organs. The doctors want to be conservative and check everything out, which I'm grateful for. Hopefully we'll know the results of the test later tomorrow or Monday.
The Flagyl will be done by end of day Saturday (hopefully the infection will be gone), and the prenidsone will drop again next Monday. It was supposed to be the same day, but I'm going to stay on the 40mg an extra 2 days, so I don't have 2 major changes in the same day. One thing at a time... I'm hopeful some of these weird symptoms will go away, I can build up my nutrition, and start feeling better soon!
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