Thursday, April 28, 2016

Layer by layer

Something happened to me, the other day as I was working on an art project.  There was this brief moment, when I started to fall in love with the piece I was revealing.  The piece was far from finished and I haven't taken a photo of the final product, because it is part of a series of gifts I was working on for a friend.  This is a photo of all the paper I was rubbing off to make the piece.

This brief moment was not when the piece was completed, in fact far from it, I had just started the process of removing the paper, and making a huge sticky mess of water, paper and glue.  Still it was intense to have that feeling come back again, even for a brief moment.  I felt like it had been years of working with art and beads, that I was in love with my work, with what I was doing.   

The piece is not perfect, and at the same time it is perfect.  Because I was able to tap into that feeling, that craving that in some way my spirit was coming out in the work.   

As I peeled layer, after layer and the photo came into resolution, it reminded me a lot of this process I am going through with my condition.   I continue to do treatments, to take herbs, to learn more, to ask questions and I continue to fall down and get back up.  

I am still recovering from a flare that struck a couple of weeks ago now, and was forced to look at the fact that although I am making progress there might be something else that will help.   I went to my doctor, to honestly explain that the herbs, the diet changes, the physical therapy and other techniques are helping.  However I am still having a lot of trouble adding more variety to my diet, and even foods that are considered "safe" have ended up triggering me.  

It is time to go to the next tier of treatment, and while I wait for insurance approval I am looking up information about the risks and benefits and seeking out people with experience.   I have also decided to cancel a weekend yoga training I wanted to attend in May and my summer writing program trip to Boulder.   I decided that I want more time to take care of myself and learn more, and although I feel disappointed and frustrated.  I needed to be honest with myself and my capabilities at this point.  I need to continue to peel back the layers and determine how to best take care of myself, to let go of the pressure that I was feeling to move past this and get on with my life.  

This is my work right now, to move slowly and carefully.   To continue to set goals and focus on the work to achieve the goals, not focus on when or if I achieve the goal.   For me to be open to the opportunities that come up because I broaden my focus and allow the results to come into their own resolution.  To fall in love with peeling back the layers, to fall in love with the mess, the pain, the joy, the grief and eventually let it simply be.  

Question of the Day:  What are you working on in your life right now?  What fuels that work?

Friday, April 8, 2016

Celebrating tiny shifts

There are nights that I wake up screaming in pain, when I first was getting sick they happened pretty often.  Often enough that Adam eventually learned he could go back to sleep and hold my hand while I cried.   Slowly working through this process I have learned different words to use other then just "pain."  I have learned to locate what hurts in the body, and certain things that cause referred pain, which helps me figure out what might help.

This is a huge shift for me, to be able to take these signals that can be so crippling and devastating and not immediately blame myself, not immediately think I must have done something wrong.   It is valuable after the crisis stops to look back at what might have influenced the sudden change, but in the moment it is more about what will help.    

For example I have learned with bladder spasms, the most effective treatment right now is medication, a warm herbal pillow and rest.   Last night it was stabbing pain in the left kidney, which can be referred pain from my bladder, it can be nerve pain, it can be muscle spasms and other things that I am not aware of.   At first all I could do was stop screaming and try to breathe.  Adam was gently reminding me to breathe, whenever he noticed I was holding my breath.  While I was deciding if I could move, if I could see if any of the exercises I have learned would help, listening to what my body might need and what was going on.  Grateful that so many people have taken time to equip me with skills to help, grateful in the immense pain that I felt like I had options, and I was no longer helpless.  

I cried and didn't move for a long time and eventually the pain dropped just enough that I could stand up, and walk to get some water, stretch and warm up the herbal pillow.    (Someone might be thinking, why not ask Adam to grab the herbal pillow and water?  Because walking with the correct posture and stretching helps me determine what might help.   It activates muscles that can take pressure off the nerves and even if it is for a heart beat, it drops the pain a tiny bit.  It gives me valuable info.)

As I was walking to the kitchen, I thought of a book that Adam and I are listening to.  Furiously Happy by Jenny Lawson, in which she described waking up in the middle of the night in excruciating pain and telling her husband "a leprechaun is trying to crawl out of my chest."  It made me laugh, which again dropped the pain a tiny bit.  I imagined a tiny little leprechaun sneaking into houses late at night and taking a tiny dagger and poking people to see who responds.   

I eventually made it back to bed and drifted in and out of sleep.   When I woke up the pain was at about a 7, which for me is manageable, it is draining and I got to reprioritze my day because I know I will need extra time to rest.   

I don't know what it is like for Adam to watch this, to support me, I do know that it takes a toll on him as well.  I am not the only one that loses sleep, that has to change their plans because life happens, but he continues to kiss me good bye in the morning, to laugh, to play with me and to hold me when there is nothing else that can be done.   Somehow we continue to stumble through this, and support each other.  

So despite the taxing night, I feel like celebrating a little bit.  It is a huge shift for me to not immediately blame myself, it is huge for me to not feel like I did something wrong to cause this.   It is also a celebration for all the people (who probably have no clue) that helped to equip me with tools, that gave me encouragement, or that simply loved me when I had such a hard time accepting myself.  

Question of the Day: How will you celebrate with me today?  I am going to a movie with a friend, after a little nap and then who knows what else life has to offer.   Time to drink up!