Trying Again
Sunday evening January 11, 2009

I started this blog July 17, 2007 and posted for exactly two days. I started a blog because my adult children encouraged me to blog as a way to connect with others struggling with Lupus. It felt like a very foreign way to meet people and connect. After all, I'm 50, mother of five, trained in the communication arts and my kids are telling me that the computer can become a pathway to friendship since I was so housebound. Well, being that it's almost 18 months later, I clearly wasn't convinced that the blog thing would work for me. And, as life would have it, Lupus hit me hard and strong in the fall of 2007 commencing with a five week hospitalization that included an esophagectomy in November '07. There's much to tell about that experience and I'm sure I'll touch on it in the upcoming posts.

But that's not what's motivating me today. I am finally really wanting to make contact with others who deal with SLE daily. And I mean daily. You see, I'm doing 'really well' and according to all accounts I'm "looking really good" - which is all true when they remember how sick and near death I really was in 2007. I'm not that sick by any stretch of the imagination, but my body is not doing well. And quite frankly, I'm really getting tired of this routine. Go figure - all my autoimmune bloodwork is clear - that's great - Lupus is still in remission - that's six months for me - the first remission since I was diagnosed in 2003. I am very grateful for remission and for the Ritixun chemotherapy that finally destroyed the abnormal B cells so my healthy cells had a chance to regenerate. Yet daily SLE is still a major part of my day.

We had an incredibly wonderful holiday season. Our youngest child was home from college for five weeks; another child for two weeks, another for one week and the ones living close by were in and out all month. Being that last year I was barely out of the hospital and our daughter was married right after Christmas, it was a real joy to celebrate in ways we love - baking, cooking, projects, games and running around together. Today is the first day that I didn't have to do anything or be anywhere. I made myself get up at 1:00 only to return to bed thirty minutes later. At 3:00 I made myself get up and iron so as not to feel too lazy. My bed won again an hour later. It's been a day of cheezy chick flicks - no demands on my body. Yet I walk down the stairs and my body screams with pain - myofacial pain from this great disease. I didn't take my extra morhpine and muscle relaxer today because it really bothers me to have to take it daily - sometimes multiple times - just to walk without level 6 pain. I gave in at 6:00 and took the pills - I couldn't stand it any longer.

I did okay today letting my body rest after a month of more action than I can handle. I loved and cherished every minute of it and wouldn't do it one bit differently. I have learned when I really do have to stop and go to bed - often at 7:00 - and I do. And, I know when I have to stop completely until my body tells me that it's ready to go again. I didn't listen fully to my body today - I really shouldn't have ironed. I really needed to stay in bed all day long. I know that I have to see my cardiologist tomorrow which will take two hours and Tuesday we will be in Los Angeles at 7:30am for a test, followed by a post test consultation with my G.I. at 10:00 and then a treck down to San Diego for botox treatments for my migraines at UCSD at 2:00. We'll leave at 5:30am and be home by 5:00pm. Now that doesn't include the emotional impact of the news we will inevitably receive from the doctor - we know there is still a serious problem that must be dealt with - the doctors and simply trying to figure out how bad it is and what they can do. And this is remmission!!!! I am left dealing with the damage Lupus did when it was active as well as the problems that arose from taking steriods for so long.

So tomorrow, I am starting again. Starting with the next round of doctor appointments, test results and decisions of how to move forward. Starting again with daily giving my body what it really needs in both exercise and rest - committing to planning each day to take care of me first - the only exception being medical engagements. That's a huge thing - planning daily for what my body needs. I know how to do it. I know when I overdo it. And I don't always stop myself from overdoing it. I know what loneliness feels like and I am still a bit afraid of ending up lonely from the effects of Lupus, once again. I like the fact that I can start again as many times as I need to. There are so many things I really need to do .... things that are very important to me but that have gone undone because I couldn't keep up. That is where I have to stop myself and tell myself that it doesn't matter that I can't make up for all the things I didn't do or that I can't even catch up this week. What I can do is take care of me and choose one thing to do each day that will make me feel like I am catching up with my world once again.

It was sunny and warm today. God sent the sunshine to warm my soul. I didn't even get outside - the sun shinning in was enough for me. Tomorrow will be the new start of taking the best care of me that I can. And whether I succeed or fail, I will be okay. I will do the best that I can with what I have to deal with. That's what we all do. I think it's called living.