What’s Up With Me

I’m sitting here feeling emotions so strong that I might be overwhelmed by them. I know that I am nowhere near the worst part yet. I can’t face my fears head on and I can’t run fast enough to escape them. I am just going parallel to them for now. I know there is going to be a place down the road where my path and these fears are going to converge.

I am so tired of running this race with death. For the past 6 years, I have had the constant fear of my husband dying, because of his neurological condition. I have been slapped in the face by my own mortality the past few years after my diagnosis of Systemic Lupus Erythmatosis. I think my case is going to be the long drawn out chronic condition, but I know a bad case of some infection could wipe me out. Just when I seemed able to travel along with death for a piece, companionably, my Daddy has been diagnosed with cancer.

He has always been the one who would make things right in my world. When I have run out of options, I can go to him for advice and help. My Dad and Grandpa are/were ministers, so I have relied on them for spiritual guidance as well as the practical kind. I’m gonna be on my own now and I don’t know who I am going to rely on.

I do not know if I am strong enough for a world where my husband or my Dad no longer reside.

I found an old photo of my parents, when they were young and full of promise and did a scrapbook page. You can see it here.

Christmas Blessing or Curse?

We had our family thing on Christmas Eve this year partly because my daughter planned to go with her fiancinators family on Christmas Day, and because my brother was originally supposed to be in for the weekend. He had to change his plan because he got stuck in Chicago making a run in his truck. One of the things I HATE about Thanksgiving and Christmas is that even if I do the cooking, someone else always has a reason why we should do it when they want to. I would be perfectly happy to eat a bologna sandwich under the tree but my husband thinks Christ and the 4 Horsemen of the Appocolypse will come if we don’t have the whole kings feast for Thanksgiving and Christmas and he got worse about it after his mother died. Not that he didn’t insist that we have our own dinner when she was alive. My Mom wants to make the dinner but is not physically or mentally capable of doing it and so makes these grandiose plans and at the last minute, I have to try to pull off a hail Mary pass in order to have some sort of meal.

This year, in the midst of this my spoiled daughter told me she wasn’t going to do anything for her brother for Christmas because he was not nice enough to her to deserve it. I had a hard time not blowing a gasket. I mean, I do alot of stuff for my family without respect to who deserves it and when we get right down to it, we are all undeserving of the good things we get and we usually don’t deserve the bad things that happen to us either. She seemed to have at least a pretend change of heart after I told her I sorta felt like my life must have been a wast if all of the things I did for her because I enjoyed doing them and enjoyed seeing her happy left her feeling that I only did things for people when they deserved them and that was what she learned from me.

Of course, I know that isn’t the example I have set for her, she just needed a knot jerked in her tail.

December 24th, I woke up hurting all over and feeling like I had not even enough energy to breath. I guess the stress was making my Lupus act up pretty bad. I didn’t need to butI was almost too depressed to get out of bed Chritmas Eve and start all of that family togetherness. I didn’t need to put on any blush, because I had a nice Lupus rash on my cheeks. Oh, well maybe a little eye shadow and mascara would remove the corpse like pallor. Once I forced myself to do it, it turned out much better than I hoped for.

Everyone had a nice time, ate well and enjoyed their gifts and I felt like my life wasn’t so wasted after all, seeing their smiles.


I feel like crap this week. I am slowly tapering off my prednisone dosage.  The whole experience with it has been bad. They make me feel much better, but I had a BIG weight gain. I went from a 14 up to a 20, which I have never been in my life.  My hair quit falling out and I quit having rashes. I didn’t have as much joint pain. Those are all good. I also had more energy and did not feel as weak. Now that I am coming off of them, I feel much worse.

I think I will just ask the doctor to keep me on a low dose.