It's been just over a year now. And I have been horrible about blogging which I want to change. So, I will.
Many people ask how I'm doing. I try with all that's in me to stay positive. With that being said, I am going to try and give an honest lowdown, (Is lowdown a word, and if so, is it one word or two? Just askin) I had a really great summer. I spent lots of time with my grand kiddos. They have a way of making everything better. They lived with us for about 6 months. It was a treasured time. It was a time where Jami and I really bonded in a way we had not before. We laughed, cried, and cried some more, talked (though I wish we would have talked more) watched trash television, went to the pool, (many times); basically she and the kids got me out of bed doing. What a great blessing. The house has been very quiet since they moved out.
Anyway, back to how I'm doing. I can't quite remember if it was the end of July or August. It doesn't matter. My toes and feet started turning all these funky colors. It was kind of cool having a built in rainbow! But I knew something wasn't right. And it wasn't. after taking a biopsy of my toe, it came back that i had auto immune vasculitis, whatever that is. The doc was quite concerned as it could go to major organs, and that wouldn't be good. When he said I had to up my prednisone 8x's, Tears started streaming. He also put me on yet another heavy duty auto immune suppressant. It made me really sick so I wouldn't take it. The trade off is worth it to me. I want to live while I'm living even if it means taking a few years off my life. So far so good. Other things that have been going on. I have numbness in the right side of my face and mouth. Speaking of mouth, something is going on. Heat and cold really hurt it. Chocolate makes that all better. It makes everything better! One thing that is really hard on me is my what I call brain freeze. In my mind I have always been so funny and witty, (Come on. You know it's true!) words would just come to me. Not now. I can't think of the most simple of words. I taught a relief society lesson a few weeks ago. I used to do that kind of thing rather easily but I totally bombed this time. Someone commented after that they had heard me teach before and that she knew I used to be able to. I wasn't in the least bit offended. It's true. And I can still play a mean piano! Sometimes. Though I never play anymore.. It takes me all day to accomplish fairly minor chores like cleaning the kitchen and family room. It took me hours with many breaks. But I did it. Right? I get out of breath and my heart races. My oxygen hasn't been as good as it was the beginning of the summer. But that's ok too.
More than anything, I get down sometimes. Especially lately. I have a dear friend who has a disease similar to mine. I read her updates daily. She has such an incredible attitude. She is 80 lbs now and has pretty much round the clock care. She has lost her hearing in one ear, and the other is having problems. She wasn't expected to make it through last year. She still goes on. She has a productive life doing small projects as she can. I get sad and scared when I read her updates. I fear that that will be me in the future. It's not the dying that scares me. It's the living on and on like that. As I told Curtis, I don't know how to be a spectator.
I am still fairly new into this whole sick thing. Nils asked me last night if I feel like a well person with sick days, or a sick person with good days. I said the later though I don't really know yet. I dream of great runs or doing other things I have always loved to do. In the morning between the time of being both asleep and awake, I think, I'm going a run. It's such a beautiful day. Then I wake up all the way and reality hits me.
So my goal is to set goals, to find passion in my life, maybe to be a well person with sick days would be the way to go. Yep, that's what I need to do though I feel even as I'm typing, that that isn't an honest answer.
Thank you all for your continual love support and prayers for me and my family. I'm ok and it is my favorite time of year you know!