Monday, November 28, 2016


I went to see a new doctor a couple of weeks ago, and for the first time I saw the medical record from the last year.  Seeing that huge stack of papers, gave me some perspective of what I had been through since my diagnosis.  As the doctor asked me questions, he kept glancing at the stack and finally said "it is obvious you have been through a lot in a small amount of time."   I was already nervous in this appointment and that really sent my emotions over an edge where I wasn't thinking terribly cognitively.  So when he suggested adding something to my treatment plan, I just smiled and nodded.

I didn't ask second level questions, because when I am stuck in the the limbic part of the brain, the prefrontal cortex isn't getting a lot of blood flow.  When I finally settled down and was able to give Adam a call, he asked me second level questions that I didn't have answers to.  I researched the drug online and had to make a decision.  I needed to gauge how I was feeling lately and determine if the possible side effects and my previous experience with similar prescriptions were worth an experiment.  

I feel a lot of times I live in two different worlds, two different approaches to healing the body, two different desires.  Some doctors focus on comfort and wanting quick results.  On the other side of the coin are doctors that are wanting to dig a bit deeper, take some more time and focus on the entire body.  Both sides focus on relieving the major complaints, both approaches are useful.  I tend to want to dig deeper, to change my lifestyle and see progress happen over time.  However it was time to acknowledge that I had hit a plateau, that I was getting about 4 hours of sleep a night and even though that was a huge improvement from a couple of months ago, it isn't a good amount when working to heal the body.  

I picked up the prescription with a lot of trepidation, and picked a time to take it in case I did have some bad side effects.  I needed to find a way to gain some certainty, to understand what the trepidation was about.  What was I so worried about?  

I asked Adam a simple question: "Will you take care of me?"  It seems like a silly question, maybe even slightly insulting because he has stood by me through so much.  However it is still a fear, the gremlins that whisper to me "that I am not good enough for him, that my condition makes me less valuable."  Adam is extremely patient and always lets me ask that question and talk it out with him.  He knows it is not an insult or based on previous experience.  He understands that it is something I need to be reminded of constantly, and even though it is frustrating to him, he is kind enough to listen.  

What Adam didn't realize about that conversation was that it was also addressing an experience I had when I was really sick.  It was a hard time for me, traveling and feeling like I wasn't being taken care of.  I felt like I had to keep pushing, that I had to act well, that I had to keep showing up or I would be left behind.  Because I felt left behind, my filters created this story that I wasn't good enough to travel, to accept help and to be loved.  The reality was when I first started to have flares, I didn't have language to describe how I was feeling, and most importantly I didn't know what I needed.  I was so focused on wanting the pain to stop, I didn't know what I could do.

In a year the biggest skill I have gained is when I ask Adam to take care of me, and he follows up with "what do you need?"  I generally have an answer.  Sometimes I need to sleep, sometimes I need to be left alone, sometimes I need someone to hold me while I cry, sometimes I need a break from cooking or other chores.  I am no longer stuck in that space of I don't know what helps.  That was a horrible state to be in, to be helpless, to not have language or experience to know better.  It doesn't mean I was bad then and I am good now, looking back at a year ago, six months ago I realize how many things I have learned that do help.   It doesn't help with the pain, it doesn't help me sleep at night it gives me peace to know there is always something that can be done, to know it will change and it is really okay to ask for help.  

So maybe in the end I am not stuck between two different worlds, maybe I am the peace that exists in between them.  

Question to consider:  What skill have you really made progress in, in the last year?  What do you have experience and language for that previously made you feel helpless?

Sunday, November 27, 2016

Sunshine Sunday

Here is to spontaneous adventures that lead to insights and my lovely husband that makes things happen!  

Monday, November 21, 2016

Where the magic happens...

Where does the magic happen?   Where does the transformation happen?  Maybe it happens in the dark.  Adam and I enjoy going to magic shows.  We watch them and discuss them with very different eyes.  Adam is very good at spotting slight of hand and misdirection, where as I notice the patter, the rhythm, the lights and the whole stage.  It is amazing the different types of tricks that "fool" us, the ones we cannot figure out.   Adam loves to figure out how the trick is done, and I hit a point where I love the mystery. 

This is a pattern for Adam and I, it makes sense why I love Chemistry and he loves Physics.  I hit a point where I accept there is some "magic" and he wants to keep going and zooming in.  However in other areas of our lives we are the opposite.  When is comes to health for example, I am extremely zoomed in and aware, honestly I want to control my health.  Adam is much more trusting and accepting that things will work out.  I would love to blame this tendency on my current condition but that is not true.  The necessity of keeping food journals, and tracking symptoms has made me zoom in even more, but I have always had a tendancy to be easily thrown off balance when it comes to health.  

That tension right before the scales tip, before the pendulum swings is the moment that magic happens.  It is that dark place that is difficult to put your finger on, that place that is impossible to show.  It is that place where you are lying in bed and decide to face the day or cover yourself back up with your blankets and shut things out.  It is the place where you don't know how you keep going but you do.  These moments are the ones that I feel a lot of the time, having to accept and trust that can and will do something, having to accept that it is okay to say I won't do something and refining those choices to be true to myself.  

I spent the last couple of days alone, and when I crawled into bed at night I felt the darkness, the emptiness of the house that I no longer fill.  The vacancy left by Sterling and the temporary vacancy left by Adam traveling.  Honestly it sucked, I cried every night and I made the commitment to sit with my feelings, to write, and to explore the darkness.   This is how I showed my gratitude for that vacancy, to allow myself to grieve for a life that is in the process of transforming.  To accept that I might still feel like I am in the dark, but that is exactly where the magic happens.  It is not about changing the darkness but understanding its purpose is always to bring me back into light.  

Magicians create a certain amount of tension and transform that tensions into applause, laughter, exclamation and other emotions.  That tension is when the transformation happens and when the prestige is witnessed relaxation occurs.   The relaxation, the applause, the laughter might be the desired goal, but that is not the magic.   Everyone you encounter in your day that you admire, that is bright and glowing to you, has their moments of darkness or tension that created the person you see in front of you.  

Question to consider: Where do you think the magic happens?   When does the transformation occur in your processes?  

Sunshine Sunday

Monday, November 14, 2016

What is being asked of me?

One of the running groups that I follow on Facebook had a photo yesterday and the caption read something like "despite being sick I finished the challenge..."   We have all seen these posts, people being proud of pushing themselves when they are sick, people working themselves to a deadline and giving up everything. On the same page I might find posts of injuries and people being mad that they have to take time away from running, that they won't get to participate in such and such event.  

I am the same way, I want to push myself to the breaking point.  I get frustrated when I am not able to do the things I want to do.  So posts like "despite being sick...." are a huge trigger for me.  I immediately launch into a story about how if they can run 19.3 miles why am I struggling with walking 3?   I don't know their story, I don't know what being "sick" means.  I don't know how long they will take to recover from pushing their body.  

I do know that I feel like I am moving slowly.  I know that after going grocery shopping and cooking a couple of meals, I usually need time to sit or lay down and recover.  I know that I tend to limit my activities to one a day because I need so much more down time then I used to.  I can logically tell myself that my body is constantly having to use it's energy to regenerate my bladder lining and heal internal damage, but it doesn't help.  Knowing all the science doesn't give me certainty, doesn't give me a mathematical formula that says "you can do this much."   I hit walls all the time.  

This past week has felt like a huge regression and this morning I felt defeated and wanted to hide in my bed.  In truth I am making progress, it just just slow and requires me to be clear to see it.  So I looked up at Adam this morning and told him that I couldn't make packing up the house a priority right now, that I need help with continuing to make my health and well being a priority.  That I have applications for residencies I am working on, and that is my other priority.  In addition to helping to take care of Adam, I only have room for so many balls in the air.  While I braced for Adam's response, since this weekend I was focused on getting stuff down for the house.  He simply said "I am happy you see that, I was wondering how long it would take you to put something down."  One gift of this condition is that priorities quickly become clear.  

So I offered the ways that I can contribute to packing up the house without feeling so much pressure, because moving to a smaller, easier to care for place is important.  I just need to be clear on what is being asked of me in this project. It would take too much energy for me to take apart furniture and move it downstairs.  But I can work on the smaller projects like fixing sinks, planting flowers and packing up glassware.  

The grieving process is still ongoing, as I continue to accept that there are things that do not make sense for me to do right now.  That it is not about desire, passion or will; it is just something that I need help with.  In this culture we gain so much significance and praise for doing things by ourselves.  Maybe it is time to start praising the people that are asking for help too.  Because honestly, asking for help has been the hardest lesson for me during this illness.  Honoring my body, mind and spirit and acknowledging that I will not be able to do the things that mean the most to me without a little help from the people in my life.  

Question of the day:  Can you identify something in your life you would love some help with?  Can you take a step to identify someone that is capable of helping you and start that conversation?   

Sunday, November 13, 2016

Sunshine Sunday

I had to chose two this week.  This guy right here keeps me wanting to live life to the fullest.  It doesn't matter how that changes he wants nothing but the best for me.  

Monday, November 7, 2016

Permission slips

Anyone else remember permission slips?  I would take one home for my parents to sign and then I would be free to go on field trips, or participate in extra activities.  Permission slips were this piece of paper that offered freedom and play.  So when I was listening to Brene Brown discuss writing yourself permission slips it seemed like a fun idea.  

"I give myself permission to rest."

"I give myself permission to play."

"I give myself permission to accept that something is near and dear to my heart."

"I give myself permission to fail."

It might seem a bit silly, who needs to ask for permission to look after their own needs?   I probably don't need permission, but written words are a bit of a talisman for me.  Having something in my pocket, that I can feel and touch, that can bring my focus back is something I need right now.  

While I was writing myself permission slips, I got really curious about why some things are so difficult for me.   Why it can be so hard for me to rest, when I know the benefits of it?  Why do I push myself on the days I feel good, what would happen if I used that day to really rest and play?  

This comes back to those same gremlins, the gremlin of not being enough, the gremlin related to being judged and found wanting.  How do I face those gremlins?  How do I approach those fears in a way that strengthens me?  Because right now, I do worry about what other people think.  I do wonder when people read my writing, that someone is deducing about me.   How do I get clear about that?

I need to get clear on the people who's opinions actually matter.  The people that are honest and vulnerable with me, the people who can raise me up or bring me back to earth.  These are the people that have seen me at my best and worst and love me because of who I am, not some image I project.  These are people that have earned my trust and that I trust with my stories.  So I created a sacred little space on a piece of paper and wrote a few names down.  

This little paper gives me permission to not let other people affect my worth.  To create a boundary, between what I do and who I am.   Because I welcome critiques and help with what I am doing, I have also been letting it affect my worth and how I see myself.  I have been letting the external image drive me, and as someone that is drawn to the allure and illusion of perfectionism, that is a destructive motivation for me.  

I can aknowledge that what people say and do can hurt my feeling, can make me feel proud or bring up all sorts of emotions.  I am not those emotions and the majority of people I interact with on a day to day basis do not get a say in my value and ability to contribute.  

Question of the Day: Take some time to write some names down on a small piece of paper, take some time to get clear on who's opinions really matter to you and who you are just pandering to or trying to please.  Does this exercise create some freedom in your life, or free up some energy?