Monday continued on like Sunday; 20mg still made me feel awful. I went to my parents in the afternoon, in the worst condition. I could barely keep from crying. I was regurgitating the juice boxes and the effects of the prednisone were miserable still - even 4 days being at 20. I sent a message to Dr. Taft, but didn't get a response. I knew I would talk to her Tuesday at 11, so I figured I would wait. I also called Dr. Gonsalves' office too, to determine what was best to do. I called Dr. Gordon, and she increased my xanax (Northwestern is not happy about that - but my pulse is over 110 ALWAYS), and I need something to help manage these horrible symptoms.
Monday night, I had only had 6 juice boxes (2 short of goal), but by 7pm felt pretty decent, and helped get Drew ready for bed. Lucy was up again in the middle of the night, making the nights continually difficult and it impossible for me to get back to sleep.
Tuesday morning, I dropped to 15mg. I was hoping to do this so that I could be at 10 by Thursday per the plan. Big mistake. I was a mess on Tuesday. I was in tears on the phone with Dr. Taft, and met with my primary care (who basically said he couldn't help me; and wants me to see a psychiatrist). I went over to my parents and just spent the afternoon talking with them. I could only get 5 juice boxes down - the regurgitation was so bad. I tried even a bit of the neocate formula, but that didn't sit well. I called Dr. Gonsalves again, and left a second message as no one returned mine from Monday morning. They pushed my prednisone back up to 20 mg. I feel I've backtracked, but I've got to get back to feeling good before we can keep going. I'm just a mess right now.
Adam tried to get Drew ready for bed last night, and Drew screamed his head off while I took care of Lucy. It was horrifying to listen too. Drew wants Mommy to do everything for him, and he goes nuts if he doesn't get his way. It's really adding to the anxiety. We also started Lucy on rice cereal yesterday, in hopes that she'll start sleeping through the night soon. Of course, she took well to the two servings yesterday, but I was up with her at night. She was wide awake after drew went to bed, so we were up until after 10 trying to get her to go to sleep.
This illness is a pain in the ass. I so want this to be done - I want to be off the prednisone, have a good scope, and get back to eating again. I want God to take this burden from me, so I can be with my family. I want my kids to behave and not act out so it doesn't add to my stress of everything else. It's been a difficult several days to say the least. Please continue to pray as will I. God's will be done.
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