Yesterday was a very long day. I was up with Lucy for her nightly feeding at 2:30, and didn't get a lot of sleep. I then helped get the kids ready to go to Mom & Dad's, and was wide awake after that. So, I showered, did my hair and makeup, and got all ready to go. It was pretty exhausting just doing that, but it was nice to get made up for the NWMH visits. I left for Mom and Dad's about 9:30, and played with Drew and Lucy until Pat Jarot arrived at 11:30.
I drove downtown and Mom came along in case I got tired. I was tired, but needed to keep driving and trying new things. We met with Beth, then Dr. Gonsalves, then Dr. Taft. All were excited to see my progress and me looking more "human". I was in bad shape the last few times they saw me. Beth discussed the food trials a bit, the need to add a few more things into the weekly lab work, ordering more juice boxes, and that she wanted to see me right before we start the trials. Dr. G and her resident then met with me. They dropped me down to 20mg, which I started today. I'm ready to come down off the prednisone, as the symptoms are really hard for me to manage - the blurry vision, dizziness, heart palpitations, shakiness and lack of sleep. Plus, I just finished treating a yeast infection, and was diagnosed yesterday with oral thrush. Good grief... more meds. I'm really prone to infections lately. Dr. G wants me to call her again next week, and we will probably drop another 10mg, then drop by 2.5 each week, and be done with prednisone by Thanksgiving. Then, she wants me on the formula diet for 3 weeks post-steroids, so we can ensure the prednisone is out of my system before the food trials. Then, we do allergy testing and an endoscopy. So, it sounds like food trials will start around the new year. I'm supposed to see Dr. G in 3 weeks, but she was booked until 12/15. If all I'm doing is just dropping prednisone until then, it may not be worth going in, but it's up to her if she can fit me in. It's not easy to get in to the specialists at all.
We then went to see Dr. Taft, and she was happy with the progress. My biggest issue really is managing the symptoms of the steroids. Other than that, I feel pretty decent but tire easily (probably with lack of sleep). I talked to her about returning to work, and she wanted to make sure I gradually worked my way back and didn't overdo it. My work has been really flexible, but it's hard setting expectations when you have no idea what the future holds. This is a very busy time at work pre-holiday, so I know I'm going back to a higher level of stress than usual. I could feel the uneasiness start to set in during my discussion with her.
After that, I drove the 1.5 hours home. I was totally exhausted after that. I warmed up dinner that Pat Jarot brought over for Dad, Drew, and Adam, and held Lucy while they ate. Drew was crabby again, as he missed his morning nap. By 6, I was ready to leave my parents; I really just wanted to go home and relax. When I'm tired, it takes every ounce of energy not to lose my patience with the tantrums. Nights like that, I usually just pick him up and we get stuff done. I don't bother to reason with him or try to coax him. We got home, Drew had a snack as he wouldn't eat his dinner, Kathleen dropped off Reeses, we got Drew ready for bed, then Lucy, then I did the dishes, and I went to sleep at 8:30. Adam stayed up late to watch the ball game; it amazes me when he says how tired he is that he won't go to bed early when he can. I guess it's a guy thing to watch the world series.
This morning, Lucy slept until 4:45. Since she didn't nap at all yesterday, it was expected, but really great she CAN go from 8:15-4:45 with no feedings. Adam fed her at 4:45, and she fell back asleep after the feeding. We woke her at 6:30 to go to Grandma and Grandpa's after I got Drew ready. Drew again was really fussy and whining at everything. It's mentally exhausting.
I have indigestion this morning - no idea why, and my abdomen was pretty sore. I ended up going to the bathroom - quite a lot, and looking different than normal. My mind races... another infection? Stress of yesterday? I'm really nervous about making all the med changes, and if I'm getting all the right nutrients. It's hard not to worry, but I'm trying to be patient.
My goal for today is just to rest after yesterday. I need to pick up some new prescriptions, and I'll pick up the kids in the evening. Better to rest, as Mom and Dad leave tomorrow for a wedding and Adam and I will have the weekend to ourselves. I need to be prepared; he wants to cut the grass, so I need to get my rest to be able to help out as much as I can.
I'm grateful things are improving, anxious to know what the next several months will hold, and hopeful all the med changes will go smoothly. Just taking things one day at a time... still :)
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