I am "managing" I guess you could say. It would be nice to feel totally normal but movement of any kind below my waist triggers my symptoms. When I wake up in the morning, I feel no pain. When I settle in for the night, I usually feel fine. When I sit down to rest, it's sometimes challenging to find a comfortable position but I can almost always get relief. I bought a new recliner rocker that fits my small frame and it's made things more bearable.
When I'm mobile, my leg starts to ache, burn, or stiffen. The SI joint in my lower back sometimes bothers me depending on my position. But I'm starting to figure out what I can do to minimize the discomfort. I called the doctor a few weeks ago about taking a medication that targets nerve pain - the generic form of Neurontin called Gabapentin. I've known about it for a long time because Ethan's been taking it, but hesitated to ask for it because I wasn't sure what effect it would have on me, making me extra tired or dizzy. But now since I've increased my strengthening routine for physical therapy, I've decided I should try it. I want to do the exercises in the hope they will give me long term stability but they really aggravate my symptoms. I try to do most of them in the evening when I can rest, like I'm doing now. The Gabapentin is definitely helping and only makes me a little tired and dazed once in awhile; I may eventually ask for a higher dose because it's taking off the edge but not removing all the discomfort.
The other thing I have that helps is a steroid cream for my SI joint. It works well. After a physical therapy appointment, I get a 24 hour patch that works the same way. I'm also still wearing my shoes all day and wearing the belt just above my hips. Another part of my routine includes doing correcting exercises after I shower in the morning; I start to feel worse leading up to that point but then I'm good to go for awhile.
As far as the big picture goes, I'm still able to accomplish a lot through my days, it's just a matter of timing. The kitchen and house get put in order, the wash gets done, Katrina's schooling continues, Samantha's plethora of needs get attended to, the girls get transported to their extra activities, dinner gets on the table, errands get run, other details for the boys get taken care of including chemo, college entrance requirements, etc. etc. We've had to make some changes including Dave helping me get groceries, hiring a house cleaner, pacing myself and unfortunately giving up some of my former life for awhile - playing keyboard for church, attending women's Bible study, small group, entertaining, and volunteering my services for various ministries.
I've realized I've gained other things to replace what I've given up. I'm writing again, which is something I haven't done in ages. Maybe I'll play my piano again one of these days which I haven't touched in ages. I've listened to some awesome sermons on my Ipod and discovered more worship tunes that have nourished my soul.
I was sharing with a friend early in Ethan's illness how hard it was for me to see him lose so much. Her son is Ethan's age and they're both graduating this year. Her son's life has been very full, including being student council president for two years at a very large school. My friend said something truly profound, that when God takes something away He often replaces it with something else. And you know what, I've seen that materialize, especially with Ethan's Make a Wish gift. Who would have thought Ethan and Bryan could do what they love to do right here at home, making awesome videos, recording songs, etc. And the same is true for me. God is replacing some of what I've lost with other good things. This entry is getting too long so I won't elaborate, but I'm thankful that I've been blessed the way I have.