Thursday

Has another full week almost gone by? The days since August 31st have blown by; I have trouble comprehending its Halloween on Monday. This year, we have simple costumes and simple pictures and that will have to do. Lucy's 6 month pictures next month won't be the nice professional ones either, but I can try to take some pictures of her in the cute outfit we had for my cousins wedding. I still feel bad not being able to make that - I had such high goals of being on the amazing road to recovery, headed back to work, and eagerly awaiting my first foods by Thanksgiving.

Last night I took a Xanax and ambien. I know they can be addicting, but I hate drugs and I'll be off this as soon as I possible can. I just need to get though the days. So, the 20 mgs just continued to make me feel like crap. I went to bed when Adam dropped us off at my parents and just tossed and turned. I went back down at 10ish for another juice box and headed back upstairs. Again, no sleep. My pulse continues at 116, my body shakes, my legs are restless, I can't focus well, I'm anxious - mostly from the pulse thing, I started another period a week early which I think caused an increase in the hot flashes and I think some diahearria and cramping - its just been nuts. I get all teary just talking about it, and wondering what God has in store for us.

My parents took my pulse and Bp around lunch and my Bp was normal, pulse was high. I left a message for Dr Gonsalves and the response was to increase from 20 to 30 mg. I asked her if this was normal and she said no. For some reason I'm the only person that struggles with prednisone and the elemental diet changes. With only 300 cases of EoG, I'm not sure that's what I wanted to hear. I feel embarrassed that my body doesn't handle the tapering and drinks better - but it doesn't. And the drinks are worse when the prednisone tapers. I know my body and it is what it is. I was soooo bummed as this sets back the whole schedule, BUT I need to be able to literally function too! I called my favorite Dr. Gordon and she agreed with the increase. She also agreed to fill out any disability stuff needed as she said I was in no condition to work. She thought I should split the prednisone out in 3 doses vs all at once so my symptoms were less in the am, and thought a gradual taper like 2.5 every 5 days was reasonable. Slow. But my body obviously needs things a little slower after nearly 6 weeks of this. She also wanted me to ramp up on the Xanax and use the ambien. She knows I need something to get through this and said she would talk to dr Gonsalves due to her concerns. I'm so grateful for her in my life - she is my best support medically right now. So, mom lent me 10mg more pred and I took it there. So, back to 30. Yep, it means food trials and endoscopy delays, but I need to feel better.

I got 6 juice boxes down which is not 7 but it's nutrition. I'm at the point of forcing it, but I do it as I need to. I drink that and a ginger ale and the rest water. The prednisone gives most people increased appetite but not me. It would be nice to crave a juice box :) My mom got Drew some Little juicy juice boxes so he could drink one with me at the table. He seemed to enjoy that - it was cute. I miss my kids, even when they are right next to me. I'm ready to get better.

I told my parents I need to do a better schedule - maybe walk around the block and read and do my relaxation 2x a day. I need to build up strength and I should start at 30 mg as dropping next week may be another challenge. My parents are awesome with the kids and taking care of them; I love seeing our babies so happy with them. I love when Lucy holds my moms face and tries to eat her nose and when Drew does his walks with my dad and he looks so small and points at things for grandpa to see. I give my parents, Adam and kids a lot of hugs - I'm so incredibly grateful for all that they do for me. We WILL get through this. I'm not setting any more timelines or goals - just letting the next few weeks play themselves out. No plans for the holidays, just keeping life open. God has His own plan for me and my family.

Thank you to all of my blog fans for your continued compassion and words of encouragement. I enjoy reading your notes and knowing I have your prayers and support. Please continue to pray that God's will be done and that I can have a much better recovery in the next few weeks. A few more months to wait for solid food trials is worth it if I can feel more like me again!