The nights that the kids don't wake us up are also the nights I can't sleep. Also, why does my side pain (from my pancreas) have to happen at night too? Maybe if I stop eating and drinking at five pm, then I can sleep without pain. I'm looking forward to the celiac bundle block on April 7th. They say that should numb all organ pain for a few months. So then I'll just have to go in every few months for the rest of my life, no biggie.. Good thing my husband picked a job out that will give us the ability to be able to do this. He didn't know when he married me that I'd be chronically ill, but he's handled it better than some who do know before hand. I'm glad he can be so patient with me, the kids, my brother (who lives with us) and God, while we're in the midst of this awful trial. It's not easy but he lets me rest, cry and even whine when I need to. David Mayfield is a good man.
Saturday, March 28, 2015
Last week was a quick one! David and I both worked every day and Jonny watched the kids every day. Monday night David and I tutored a gal in high school geometry. I was impressed with what a good teacher he is. Tuesday night I was sick and slept all night. In fact, I think I slept every evening last week... I started a new medicine because the chemo was finally too much after a year and a half and it had stopped helping. My kidneys kept getting worse and my specialist consulted with another autoimmune specialist and they came up with a better plan for me- cellcept. It has less side effects and has a better chance of putting lupus nephritis pts into remission. Right now I'd just be ecstatic to have my symptoms lessen. Dr Hancock did say that I'd have to be not having any symptoms for a long time before they'd think of taking me off of it, but that remission isn't impossible. That's what I'm hoping and praying for, though I know that just because it's something I WANT, it doesn't mean it's something God has in the cards for us. I'm not mad at God for making me go though this. Even though I've been up for hours and am in pain and have no idea how long it will last. My son is four and has begun to realize that I am sick all the time. He hates it and so he tells new he is giving me healing potions, strength potions, and happy potions if he finds me crying from the pain. It breaks my heart because I don't want to be sick and I wish so badly that I could play outside with him all day and that I could be ok, so he could feel like his "healing potions" he makes me are working. I know this is his trial too, but I wish he didn't have to deal with it. David too... That's the biggest reason I wish I could get better, so I can stop watching those who love me see me suffer. It gets tiring when you know they'd do anything to take the trial away, but that isn't gods plan.