The Wind has Settled Down Inside and Out

January 14, 2009 Monday morning

I think this is a true confessions blog. We used to call it journaling and it was done with pencil and paper in a notebook we'd hide so no one would find it. Okay, I have better boundaries than to put all my most intimate feelings on the internet, but truth be told, the safety of anonymity that the blog provides does invite us to say in writing more than we would ever say face to face. Having said that, I am so grateful for the very few people in my life that feel safe enough to say out loud the words I am writing.

The Santa Ana winds have been blowing like crazy for the past week and I am done with them. They are quiet this morning which is why I want to write about winds settling down inside and out.

It's been a whirlwind of a 24 hours. My years on this planet, as a therapist, as a wife and mother and daughter and friend and mostly having simply lived on this planet for 50 some years and chosing to learn from living, (take a breath) I have learned and know that things change more quickly than our emotions can possibly follow. I know that when I am hit and knocked down by Lupus related stuff, that I will also be okay and regain a sense of balance and emotional stability. There are very few things in this world that really ruin a life. Yet sometimes the things that happen in the matter of a minute, an hour, a day feel like they are changing our life completely. And ten minutes or ten hours later, the emotional winds have settled and we are back into our job, cleaning the kitchen floor, running errands, walking the dog and emailing family and friends. It's the extreme feelings that are so hard for me to be okay with.

Yesterday was a day of doctors - never a good thing for me. We do as many appointments as we can arrange in a day because we travel an hour and a half minimum to our medical care by choice. But most days it is too many doctors or tests - too much of a reminder that Lupus has it's hold on my body even though I am in remission. Yet, right now, some 12 hours later, I feel emotionally okay. I am tired and sad. I am overwhelmed by the things I 'need' to do. But I am okay. How did I get from there to here? It surely wasn't planned. In fact it all happened because I spilled the soup. I spilled the soup and in that simple act, my best defense mechanisms were useless and I screamed and cried - not at the mess I made with soup but at the mess I feel my body is. I cried long, hardly audible words of exhaustion, helplessness and anger. I stood at my sink, held onto the counter and simply cried - real tears (that matters you know) real pain at not being able to control my body and hence my life. My poor husband walked into the middle of my breakdown - as if a 12 hour medical day - five hours of driving for him - wasn't enough - our toilet broke in the Master Bedroom when we got home and so he had to go get the parts to fix it - hint: It would be very difficult for me to not have the bathroom accessible as Lupus has left its' destruction in my bowels thank you so much -. Anyway, when he left I was mearly cranky and tired. When he returned I was an hysterical woman leaning over the kitchen sink screaming and crying. God Bless Him when he came in and wanted to help I told him no. He had the presence of mind to say that when he left I was mearly exhausted and spent but that now I was really hysterical - what happened while I was gone? I told him that maybe nothing happened and that maybe I spilled the soup. That was all I said and somehow he go it. He asked if he could hug me and I cried out that no I needed to cry thank you very much. So he sat in the family room close by and let me cry. Because both of us knew that crying was what I needed most. And that if we could both tollerate how helpless we felt in the moment and in the news from the doctor, that I would be okay soon. When I felt like I needed to pull it together and serve diiner, I did just that through tears and tearful exhales (what is that noise called - when your windpipe is spasming because of the deep crying yet you are trying to simply breathe or talk and it comes out in fits and spurts?). We turned on the new episode of "24" that we had recorded and watched it commercial free - I couldn't quite get lost in it which was what I wanted so I didn't feel so depressed. But once again, it was good that I didn't get lost in 24 because my helplessness brought me back to my knees with God to a place where I could honestly remind both Him and me that I am lost in the destruction of this disease and that I cannot do it on my own! I wanted Him to be a God that would listen to me and hear my cries and pleas and heal me - that He isn't that kind of a God. He never promised to heal me. He just promised to walk beside me every single minute of every single part of this disease. He walks with me even when I forget, He doesn't. He walks with me and that is the only place where I can find rest for my very weary soul - knowing He is holding on to me when I am discouraged, exhusted and wrug out. I went to bed and slept for 11 hours. That always makes the world a better place for me.

True confessions - no one knows that I have this blog. I haven't told my kids or my friends. My husband knows but he hasn't read it. I ask myself why I am not telling anyone yet. First and foremost, I want to be absolutely free to say what is in my mind and heart about this disease. And I worry that the truth is more than my kids and parents need to hear. It's already hard enough on them without going through the dips and droundings with me in real time. I also don't want to have to edit what I say so as not to upset or offend anyone - and I don't want to have to apologize for anything either. And I don't want to think about who might read what I write - I don't want to have to worry about their reactions or feelings because if my friends read this blog they will know more about my life and my disease than I have shared becasue their is a rawness that comes out when I write that doesn't come out when I am talking with someone. I simply want to be able to write what is real in hopes that somehow it will get out to you who also have your own horrid journey along this path of life called Lupus. That is the truth. I want to find you who suffer and struggle like me because of Lupus. I want to help you by giving you permission through my own ramblings to have your own ramblings - to know that I am out here struggling too - that I have many, many days that I simply feel ruined because of Lupus and that in those moments I must, I have to find a way to get through that myre to move just one or two steps so that Lupus is not taking over my life and destroying what might be out there for me this morning or this afternoon. Because when Lupus wins by destroying my day or my opportunity to connect with someone through a smile, a sweet unexpected compliment to a salesperson or a real life encounter with someone I love, Lupus really is destroying the soul of what my life is. My body is not my life. My body is simply the container that the Lord is using to house my soul while I am here on this Earth to do His bidding. My body that Lupus can destroy is only the container - it's the soup that I spilled all over myself and my stove that Lupus cannont take away. Sounds corny. Or deep. It just fits because I spilled the soup and it moved me back into owning my life in that moment.

Well, I could write so much more. But now I really must shower and dress and walk my puppy dog who is always here with me. I hope I can take the smile in my heart with me as I move into what lies ahead. I will try to remember. Spilled soup is what really matters.