Be Patient

I saw Dr.Lerner on Monday. His summary: be patient. He said this is the hardest stage of the game because there has been a little bit of improvement, but nothing that changes the lifestyle back to its old self (or what we're aiming for- better). I continue to rest all but 4 hours or so a day. I take a morning an an afternoon nap. I have continued to get the heart palpitations so he started me on propanal. He also wants me to get an MRI on my knee and a test on my hand because I have joint pain on both of them.

I'm continuing to read, study my Bible, watch sermons on the computer (and occassionaly trashy tv) and have recently started cooking twice a week. Grocery shopping is still really hard for me as are social situations and loud noises. I have a great neighbor who goes outside and yells at trucks who park in front of our town homes to try to protect me from the noise. That is one positive that has come from all this- a year after we have moved in I'm finally getting to know our neighbors. We got some chairs for our porch. I can sit out there while the kids climb the trees and we can meet people as they walk by. My body is still having a rough time but my mind is doing okay.

3 good days

This week I enjoyed 3 days of energy! The kids started school on Friday, so I'm wondering if there is a direct correlation between the amount of rest I'm getting and how much better I'm feeling. I'm sure there is. I still have not been doing anything except sleeping, reading, making meals (ok, reheating them) and paying bills but that is about all my body can handle at this point. It is amazing how busy I used to be and how pared down life is now. I've found I can buy most everything I need, except perishables, online. If we can fork up the extra cash I can get pretty decent prepared meals and my kids have learned to do a lot of stuff on their own. Life is a lot simpler now. I feel lonely a lot, because the major "thing" missing from my life is people. But, I am starting to hear God's voice on the subject, and realizing how rich my time talking with Him can be if I take the time to do it. So often I want instant gratification, but He offers so much more if I will just be patient.

I AM

"I was regretting the past and fearing the future. Suddenly my Lord was speaking, "My name is I AM." He paused. I waited. He continued, "When you live in the past with its mistakes and regrets, it is hard. I am not here. My name is not I WAS. When you live in the future, with its problems and fears, it is hard. I am not there. My name is not I WILL BE. When you live in this moment it is not hard. I am here. My name is I AM."
-Helen Mallicoat

Keep on Keeping on

The waiting continues. The head pressure is constant. About three weeks ago when Jim came home from work I was in absolute agony with head pain. I didn't know if I was going to have to go back to the ER. He got on the phone and started calling places nearby to try to get me a massage. Anything to try to get some relief. The only thing he could find that time of night was a 15 minute chair massage. Was it really worth it? We decided it was and I drove 2 miles to the place. When I got there the woman told me that she specialized in migraines because she used to have brain cancer and she had migraines that lasted for days so she now wanted to help people with headaches. Wow. Thank you, God, for sending me to the right person.

When I saw her again she had done some research on CF and said that the reason I feel so much pressure is because the lactic acid builds up in my body from not moving around. And then it travels upward and lands in my head. Quite a problem when I'm not able to move around to fix the problem. I'm seeing her about once a week and am able to get relief for about 2-3 days afterward. I am also trying to do about 10 minutes of stretching a day to try to get the blood flowing.

It is tough to try to find the balance between moving enough to keep my body from getting sore and too much that it gets headaches/pain. Right now I can do about 2-4 hours a day. That pretty much includes getting the kids dressed and breakfast and then off with the sitter 9-1, playing with them for an hour after their nap or movie and fixing them dinner before Jim gets home. Everyday Grant begs me to play more. I have to remind myself this is not forever.