Monday

Got to relax with my family yesterday.  We went shopping for a bit, and I sat in the lawn and trimmed a few flowers back until I got tired (doesn't take much).  It was nice to get outside though, but even the smallest things make me exhausted.  I was shaking like a leaf when I came in; must be the steroids or the nutrition imbalances.  If I miss juice boxes, I get all weird too.

I'm still on 30mg of prednisone until Thursday, when we have the big Northwestern day.  Mom will take me downtown to see Dr. Gonsalves, Dr. Taft, and Beth.  Pat Jarot will help my dad with the kids until Adam comes home from work, which I'm thankful for.  I had my weekly blood draw this morning; last week's results look ok, so I think I'm getting in all my nutrients ok which is good.  I drink most of my boxes between 7-7, so I don't get reflux at night.  With 7-8 boxes, it's very manageable, just lots to lug around everywhere, with gatorade and water in tow.  It's becoming more routine though. 

I was up with Lucy for over an hour in the middle of the night, so it's been a long morning.  I'm glad I shower at night, or else I'd be even worse in the morning.  I drove the kids to Mom and Dads, and am here resting today.  I took Drew to the Dr. with me for my blood labs, to ensure he didn't have bronchitis.  So far, so good.  We're going to hold off on the flu shot though; he's got enough to deal with.  He's still very much into mommy doing everything for him.

I hope to cut back on the Zanax this week, before Thursday's drop on the prednisone, and increase the muscle relaxing program from the psychologist.  She really wants me off anxiety meds and to manage this mentally, as the year ahead will require much better management of stress and keeping my GI tract calm as we do food trials.  It's weird not knowing what will happen with each med change, but things are getting better every day.  I look forward to not being so tired, but maybe the reduction of Zanax will help.

It's been nice starting to feel better; I'm sure by the holidays I'll be back to my old self and looking forward to new food (with some nervousness of relapse, but ready to move ahead).  I do miss food more and more each day, but am grateful to be stable for now!