Thursday, May 25, 2017

Looking for the stable ground

Here I am in the doctor's office, taking another chance.  This is a really difficult thing to explain, the uneasiness of trying something new.   It took a number of months to get this appointment, this chance at "the best option."   Words that I have heard so many times in my life, not even related to interstitial cystitis, also related to infertility, to migraines, to pelvic pain and irregular bleeding.   

In my most recent follow up with my specialist, I was full of gratitude and relief that something was helping immensely.   That all the different treatments, tests, physical therapy and diet modifications had resulted in an upward trajectory.  Considering where I was a year ago, still in and out of the emergency room, this has been a huge change.  As I was catching up with my doctor and emphasizing the improvements in my life, I hesitated.  I thought do I even mention anything, do I even ask for help with nocturia?   Or do i count my blessings, and stay on this treatment?   

I was taught to be grateful for what I have, to realize how much worse it could be and to not ask for too much.  But still getting up to pee three to four times a night on average is a little disruptive to a sleep cycle.  So with my heart pounding, I asked what else could be done.   I asked if there were more ideas.  

I was left with the best option, regular weekly visits for three months for my tibial nerve to be stimulated and hopefully my nervous system slowly reprogrammed.  I was given some literature to look over and decide.  I had two months, to consider, to weigh the options, and to research.  To go over the worst case scenario over and over, because that is how my brilliant mind works.  Not focusing on the best case, but the worst case.  (Still need to practice changing my focus over and over again.)

However it wasn't until a few days before that appointment that anxiety really started to set it.  Remember I had spent two months going over the worst scenario over and over.  As the appointment loomed closer, that seemed to be the mostly likely scenario and finally the only scenario and I felt completely trapped.  I had just proven to myself how easy it was to reprogram my nervous system, that all the research and focusing on the worst case scenario and narrowed my vision, my perception and my belief of what was possible.  

So why?  Why this belief in the worst case scenario?  Because when it comes to my health, I would rather live in disappointment then be disappointed by something not working out.  Being disappointed hurts, it stings and reinforces this idea that that there is something wrong with me. But why chose to live in that state?  What was I doing?   

Yesterday, I spent the day reexamining the literature.  Deciding to look at the best case scenario, deciding to look at the whole spectrum of possibilities, and still the anxiety is there but the disappointment is gone and that is when the knowledge that everything changes shines through.  That belief that I always find my way back to, that it will get better, that it continues to get better and I continue to learn and live.   This is not that shiny place of everything is sunshine and rainbows, this is the stable ground of being able to observe, be open and patient.  It is a solid place to move from and to return to.  

I sit here feeling the pulses in my leg and trusting the path will continue to change, grow and evolve, that something much larger then me is weaving the tapestry and even if I end up being disappointed it will all lead to better service.  


Question of the day:  When is the last time you let yourself believe it was going be alright?  Do you find yourself entering situations already disappointed as a defense mechanism for vulnerability?

Monday, May 22, 2017

The last 30 pages

Almost two years, I have been working on filling this journal.  I started it when I went to Greece and it seems fitting that I finished it right before I head back to Greece.  This journal explores yoga teacher training, 40 rules of love, the Daoist Precepts I accepted as a Priest, discussions about some scriptures and the last 30 pages are what I hope will be the start of my book.  

It might be more accurate to say those last 30 pages are what it took to convince myself that I have a story worth sharing, that there is some wisdom in it that I have gleamed and that someone out there might benefit from hearing it.  

It is easy for me to write, I have countless journals that I have filled with my journeys, but it is a different game for me to say. I think there is some wisdom here, I think someone can benefit.  Writing is a state changer for me, it is a way that I gain perspective and sometimes it takes years.   It has taken almost 30 years to change my language about something, and I was surprised what started to come out when I finally admitted maybe I have something of worth to offer.  To accept that something from my own life, not some knowledge I have read about, not someone else's story but my own is worth sharing as much as the other people's lives I value.  

How do I reflect that in my life?  It is one thing to come to that conclusion, it is quite another to live it.  It is a journey of bumps and bruises, that I can't predict.  For now, it means that I will continue to work on this book for as long as it takes and I will notice the opportunities to share my own story instead of someone else's in my everyday life.  

So thankful for reading and supporting my writing all of these years.  The little bits of encouragement I get every so often, help keep me going and sharing.  Love you!

Question of the day:  How do you reflect your own beliefs in your life?

Monday, May 15, 2017

Animal Lessons

The day Adam and I got the keys to our old house, we took Sterling over to show him his new home.   We were so excited to finally have a backyard to play with him in, we imagined that he would be just as excited.   Adam and I had this equation in our head, outside = more space to play with his ball = happier dog!   So we took him to the backyard and let him explore for a little while and then brought his ball out.   Sterling looked at the ball, ran to the door and sat to be let inside.   In the 10 years that he lived in that house he only played with his ball outside once, and it was a shocking moment.  

Sterling had a lesson to teach us that day, let go of of those equations and expectations.  Sterling was happiest inside and so we made space for him to have his own "ballroom."  Because watching him play with his ball was the most amazing thing in the world and if he wanted to play with it inside, then that is what he got.  

Adam and I went to say good bye to the house, look for any last things we wanted to grab and to bless the house for the next owners.  We have both needed some space to process the grief of selling the house, saying good bye to Sterling and grieving the people that we were that day when we threw the ball out for Sterling and he went the other way.  

Maybe that day Sterling was telling us "hey humans, think bigger, dream bigger and when the grass is too itchy it is totally okay to move on."  That house saw a lot of joy, a lot of heartbreak and a lot of change over the years, and none of it was really based on that original equation x = happiness.  Sterling, Adam and I made that space a home, and so we are taking the best part of that house in our hearts and with us for the rest of our lives.  

I can't know if I would be a happier person if life had worked out differently, but I do know that there is a Force much bigger then me leading me to my life's work.   I am happy, it looks nothing like what I expected, given a big backyard to play in I decided I was better suited to learn how to play in all the spaces, not just the ones that are expected.  

Question of the day: What lessons have your animals taught you that you will carry in your heart?   

Wednesday, May 10, 2017

What can you hear without noise?

I have spent a lot of time, thinking, planning and dreaming about the moment when the pain would completely go away.  I dream about running again, the brain fog lifting, being able to drink orange juice, having more energy...all kinds of silly things.   It gives me hope, to know there are still plenty of things I want to do that I am not able to do right now, it means I have room to grow and there is still an enormous amount of passion left. When I work on my book I imagine what it would be like to be work uninterrupted without so many trips to the bathroom.  I dream about the day my husband can touch my back without wondering if it will make the pain worse.  

Monday I hit a desperation point, a flare that seemed to not be easing up or responding to treatment left me exhausted and drained.  I was sobbing on the floor simply from sorting laundry, it was hard to lay down and be comfortable and moving was not helping.  So I asked my acupuncturist if there was anything that might help, and he prescribed me an herb.   I drove to pick up the prescription, meticulously measured out the correct amount with my little electronic scale, dissolved the powder in hot water and swallowed the bitter tasting concoction.  

I sat down on the couch, and shortly tears started pouring out of eyes.  It took some time for my mind to process and register that the pain level was dropping.  The tears of gratitude and relief continued to fall for a little while as all the noise died down.  I wasn't numb, but the screaming stopped.  That miraculous moment in which the pain went away had arrived.  

What did I do?  I didn't jump down for joy, I didn't immediately grab my shoes and go for a run.  No I stayed on the couch for a while and listened to my body, the screaming might have stopped but there was still a lot to hear.  My body protested any more movement, not because of pain but because of exhaustion.  My body was more exhausted then it had ever been, running half marathons, traveling for 48 hours straight, backpacking, conditioning for sports, even that time I had mononucleosis, I had never felt anything like this.  

I mention a lot about the amount of mental focus it takes to live with chronic pain, but I had little appreciation for the toll it takes on my body.  Each and every part of my body has been working so hard to keep me going, to keep me upright, smiling and growing. So I grabbed my heating pad and crawled into bed to take a nap, to rest, to thank each and every cell for working so hard.  To thank each and every bit of me for not giving up, my will might be what gets me out of bed each and every morning, but my body works to keep me present.   

It is amazing when the noise gets turned down how many different things I felt in my body.  I could feel my ankle throbbing from where I had twisted it the day before, I could feel that my abs were sore from working out, the most miraculous thing was being able to BREATHE.   Being able to take a full breath without aggravating the pain, feeling the rib cage expand, the diaphragm and pelvic floor move, is a gift.  So I welcome my respite and instead of running around chasing after all those things I dream about I enjoy the gift of this breath and moment. 

Question of the day: What gift did you receive today?  What gift can you give back to yourself? 

Monday, May 1, 2017

1000

I have several drafts of this post, I wanted it to be so many different things.  However, nothing felt quite right, all the ideas, all the words felt like a mask to hide behind.  

I have been awake since two in the morning with painful bladder spasms, adrenaline pumping through my body, and a little bit of screaming and a lot of crying. The crying is more about the emotions and the stories that come up, the pain will pass.  A few days of an extremely bland diet, some extra care and I will begin to see the light.  

It is the stories that stay, because it is the same ones that come up time and time again.  What did I do wrong? Really, I am asking, how do I avoid this pain?  How do I avoid the pain of being alive?  

I don't.  It is not an option, because among the hours of pain, at the same time there are moments of joy.  Feeling the warmth of my husband's hand, having him hold me, both of us feeling vulnerable and wanting nothing more in the world then to stop the pain and knowing it takes time and skill is actually a moment of joy.  Moments of wonder and awe watching snow fall at my parents’ house.  Going to bed early because I hit a wall and peacefully fall asleep.  Laughing with strangers about awkward medications and doctors’ visits and making new friends.  

At about four in the morning, I started writing.  At some point I became a writer, or I accepted that I have always gained perspective and healed through writing and reading.  So today, I will accept that there is an enormous amount of wisdom in my story and my experience and I will start to organize it all into some sort of book.  I am being vague, because I have many outlines and ideas, but today I will decide to just start, not thinking, not planning but doing that thing that terrifies me and really putting it all together.  

I just keep asking myself what is the focus?  Where do I point the compass and allow the adventure to unfold?  I have spent over five years working on changing my focus, reprogramming my brain to look for all those moments of joy and beauty and maybe it is time to just keep that focus of dynamism, of flow and change.   

Changing my focus allowed me to see the moments of joy in pain and the moments of pain in joy, however lately my focus has been on noticing both, appreciating and embracing both sides, and noticing the time when everything settles and is peaceful.  Vulnerability is about being open to all of life's experiences, it is about staying in the moment and realizing this too shall pass.  

Question of the day: What wisdom can you accept about yourself today and share?  You can tell a loved one, write it down, tell a stranger or even take a few moments and tell yourself in the mirror.  Appreciate all that you have been through and all the wisdom your experiences have brought you, own it.  It is your journey and your wisdom and your opportunity to serve the people around you.  

Monday, April 24, 2017

Year Four

Year Four's focus was about finding my voice.  When I wrote those words shortly after returning from Greece, I wanted to find my voice as a teacher, transform the wisdom I had received in my years of study and use my own experience to teach others.  I immersed myself in teaching as much as I could, at one point teaching 9 classes a week.  

I think this is the case of be careful what you ask for.  The voice I ultimately was forced to listen to, was my that of my body.  To learn that pain is a message and sometimes that message is "stop."  I got to learn how uncomfortable it is to be sit in a doctor's office and say "it is not getting better."  I had to learn that it was okay to give my pain a voice and descriptions so that i could figure out different methods to treat it.  I also learned the silence of people's lives moving on when you feel like you are standing still, the silence of no longer being able to do the things you used to be able to do and people falling away.  There is a silence within change and transformation, the silence of someone else when you start saying "no."   

This was a really difficult year to look back on, because I wanted to compare and be able to say I am physically better.  However I read the post about what it is like to take 20 pills a day, and mentally found myself counting how many herbs and supplements I am still taking.  I found myself calculating how often I still reach for medications.  Then when I read the post about insurance not covering a treatment and being in that same situation now, it feels like no progress has been made.  

I forced myself to zoom out.  My flares no longer confine me to bed for days, I am constantly improving and figuring out what is necessary to take on a daily basis and what is necessary when I start to feel a flare.  Yes, Adam and I are trying to determine if a treatment is worth it when insurance doesn't cover it.  There is no guarantee that my nerves will respond, or even that there is an issue with my nerves; so where is that voice to help guide me right now?  

That is the voice that I have cultivated a relationship with not just in year four but also in year five.  That little inner voice, that requires silence, patience and trust.  That is the voice that reminds me to zoom in, zoom out or change the focus.  It is the voice that sometimes has to scream to get my attention, it is a voice that I resent sometimes and yet it has never left me.  Finding my voice was much more about listening to myself then speaking, the first step is hearing and accepting the message for what it is.  The awareness has to be there before language can form.  

Question of the day: What can you listen to today?  What is not being said in the busy, noisy lives we live?

Thursday, April 20, 2017

Year Three

Year three both started and ended with photos of Sterling, and it seems appropriate because the focus of that year was healing.  That little pup taught me so much about healing and brought me so much comfort.   He was my reminder to go easy on myself, and I rarely listened.  

It is really hard for me to just look at the theme of healing encompassing just that year.  Because as I was flipping through those pages something really stuck out to me, the pattern of achieving, of quickly getting over something and maybe not quite getting through something.

That year continued the travels heading to Amsterdam, Oregon, New Mexico, China and even back to Nepal.   I just wanted to keep going, and had no intention of stopping even when my body started screaming at me.  I started training for a half-marathon and eventually took a break because of my doctor's recommendations.  I found myself headed into surgery with an optimistic attitude that in six weeks I would be running again, the pain, the irregular bleeding and the worry would disappear.  I wanted my recovery to be miraculous.  However somewhere miraculous meant it had to be immediate to me and that was a one of my follies. 

Released from my doctor's care I started running again, and sped up my training because I had a half marathon to do.  I had to prove to myself that I was better, that my health was not as important as those goals.   So that third year ended with a trip to Yosemite and the beginning of the disillusionment that I had "healed."

The journey of that third year is not about redemption and victory.  The story isn't over, I am still in that arena of my health at the end of that year.  Sometimes things don't happen quickly or on that "miraculous" timeline that I was confused about.  However a number of years later, having lots of bums and bruises regarding my health, I can say that I finally get that my health is worth more then those achievements or short little victories.  I would not change those lessons, and I am still in that arena everyday of learning to heal, and be there for others.  Year three will continue for the rest of my life.  It wasn't a challenge to be completed in a year, it is a calling for the rest of my days, that is the miraculous recovery, embracing my health.  

Question of the day:  Why do we think we can come up with a better plan or timeline than God?

Sunday, April 16, 2017

Year Two

In year two I decided to focus on inspiration.  This was a much less focused goal, and something I am working on right now, finding and fueling that inspiration.  Inspire, that act of breathing into, the act of receiving divine breath, guidance or purpose. Inspiration is about exciting the spirit, finding and discovering the things that lift you up.  

That year was filled with me trying new things and even retrying things I hadn't liked in the past.  I left my job and started volunteering with the advocacy center.  I did crazy challenges like 33 things before 33, no TV and even 100 days of hand standing. I completed my first mud run in the freezing rain with the help of my teacher.  Adam and I did some updates and long overdue changes to our home.  We also started and stopped the adoption process, deciding in the end it wasn't the right decision for us.  

The thing that really sticks out about that year, one thing that I found that really lit my soul on fire was traveling and exploring new places.  That was the year Adam and I both started to say "YES" to traveling, to stop waiting for everything to be perfect and just find out what happened.  It was also the year that I started traveling by myself, that first trip to Nepal was life changing for me.  

Looking back at that trip and how fast everything came together is mirroring exactly what is going on now. I am going back to Greece for a little retreat.  This will be my first time traveling internationally alone since my diagnosis and the longest trip I have taken in a long time.  My health is the best it has been in a long time, maybe even better then the first time I went to Greece, because at least I am in touch with what is going on.  Still I have fears.  Going through that second year and seeing the photos from Portland, Chicago, California, New Mexico, Boston, Canada, Nepal and Spain reminded me how healing traveling is for me.   That second year is still inspiring me that I can travel, it just might look a little different and I don't get to eat all the chocolate anymore.  

Year Two was also about throwing away that old blueprint, trying new things and a lot of "beginner's luck."  It was about breathing life back into myself and taking the breath that was offered.  

Question of the day: What inspires you?  

Thursday, April 13, 2017

Year one



Counting down to 1,000 posts and over five years of writing, sharing, photographing and learning.  I listened to people recommendations about how to celebrate this accomplishment, and then I back pedaled.  I tend to minimize my accomplishments and not want to make a big deal out of things I am actually proud of.  I tend to armor my heart up, instead of offering my heart and seeing what happens.  This is when I know something is truly precious to me, when I only discuss it with a few individuals and I hide from the rest of the world.   I stopped writing, I had this fear of hitting 1,000 posts.  

This morning I woke up and looked at my count, and decided the truest way for me to mark this was to look back at each one of the years individually.  So I went into the office and grabbed the books of my blog from the first four years.  I opened that first year page and tears began flowing.  This is what I was avoiding, not the memory of the pain, but the idea that I actually accomplished that goal I set for the first year.  The fact that with that first post I changed something in my life, something I continue to practice to this day.

Trust me the pain still hurts, there are some wounds that never seem to completely heal.  Those wounds and heart breaking journey of fertility treatments lead me to seek more joy and appreciate the moments in my life.  It forced me to look around, to try new things and to return to a path I had long abandoned.  So maybe it is good that some wounds never completely heal, because that helps motivate me to continue moving forward, to not stay in that place and accept that everything changes.  

So I picked up that book documenting the first year of my blog and let the tears fall and when they stopped, I was open to discovering what happened that first year.  WOW!  There is so much that happened.  Adam and I started learning yoga and more importantly we really learned the importance of playing even when life is rough.  We learned things that helped recharge us instead of numbing.

I started to learn to be creative again, I started to work with glass, paint and theater.  I also got to take a glassblowing lesson which is still a highlight of life.  I really started to look for all the good things in life, and I think every negative pregnancy test helped prepare me to meet my teacher and ultimately guide me to wanting to become a Chaplain.  

There are so many good memories in that first year, mixed in with the carefully disguised disappointments and even some not so subtle memorials to people that I said good bye to that year.  At the end of that first year I had about 365 photos to make me smile and remind me how beautiful life can be even when it feels brutal.  

Question of the day:  What do you use to remind you of the beauty in the world?  When is the last time you looked through an old photo album and let the tears, laughter and joy flow through you as you traveled to another time?             

Sunday, April 9, 2017

Sunshine Sunday

A little bit about peace, is it about the environment or about the state of the heart?   This week I finally asked for help with something, I did something completely terrifying and reached out honestly and sincerely. I dropped the "I'm okay" mask in a situation where I felt like I had to be "okay" all the time.  I think I held my breath awaiting a response, because I was feeling unheard and unseen with this issue.   When the person responded she brought a bit of light into this little valley I am in right now, a little bit of empathy, and took my hand to remind me of that light.  

There is still work to be done, there is still growth that will come from this fertile soil, but I was given a bit of peace that I wasn't alone in this.   So when Adam and I finally made it to the beach, I just wanted to soak up that light and peace, gathering a bit of my resources because it is time to start climbing out of the valley.  

It feels like a great focus heading into Holy Week, to remember the resources that we have to gather and maybe even reaching out for a few new supporters.

Question of the day: What is an invitation for growth in your life, and how will you accept it?  (I tend to accept things kicking and screaming, but I am working on making those intervals shorter and shorter.) 

Sunday, April 2, 2017

Sunshine Sunday

I miss my little dog, but I am happy he missed this rainstorm.  

Friday, March 31, 2017

I stayed

I woke up in the morning and all of me hurt.  I could barely move and I struggled to get myself out of bed before giving up and crawling back into bed.  Overcome with grief and physical pain I just didn't want to move however I couldn't bear to stay there.  However I stayed.

I was left alone with my aching body and my stirred up emotions, my shoulds, my plans for the day and I just wept until I fell back asleep for a few hours.  Eventually I got up and made myself my tea and a little bit of breakfast.  I needed to move, and yet I couldn't think.  So I gathered my yoga mat and walked to a class (thankful that I can walk).  I was looking forward to an hour of nothing to think about except where to put my hand and my foot.  Where someone else would help guide me in unwinding my body.  

I placed my mat on the floor, took a sip of water and did my best to feel my breath as I waited for the class to start.  She had us start on our backs, to do a bit of facial massage and relaxation.  I could feel my breath jump up into my throat and my pace quicken as I looked up at the ceiling.  I willed my eyes shut and brought my hands to my face to follow the directions.  I pressed the first spot and tears just came flooding out and at the same time the feeling of panic, a feeling that I had to get out of that room as fast as possible.  

I stayed.  It was the longest yoga class I have ever taken.  I just kept telling myself, "stay on your mat." My breath was erratic and I was an uncoordinated mess.  When class was over again I had to force myself not to run out, to just gather everything up and walk out.  

I walked home, taking a brief detour to go by the bayou, and there I found that same grief.  The broken heart that was wanting to be taking care of.  There has been a lot of grief this year, saying good bye to places, friends, coworkers and family members.  Sometimes there has been something grand to look forward to because of those good byes and sometimes there has just been this ache, this space left by someone I love and treasured.  It piles up, and I needed some time to recharge.  

I just found myself floundering around about how to actually recharge, how to express these various griefs that built up.  I found myself in that familiar place of not being able to go back and not quite which way was forward.  It is a space I write about frequently, this space of what do I want?  Where do I put my focus?  

What happens when the answers to those questions are simple, focus on work, laundry, taking a shower and meal preparation?  That was when all of my shoulds kicked in.  The story that I needed to have better goals and focus, that simply getting through the day was not enough.  However listening to my body and my emotions that is exactly what I needed, to just focus on the next breath and allow the creativity to bloom, allow those more "important" things to come into focus instead of forcing them.  Sometimes it is okay to stay on the mat and just gather yourself together before taking that next step.

The mat is safe, it is a place to recharge, to grieve and to work out emotions.  It is a space that is okay to be and get back in touch.  It is a place where it is expected that you will wobble, learn new things and fall down.  Right now life is just my mat and it is okay if I wobble and fall down, it is okay that I don't know what to do every moment of every day.  It is the space between the notes that makes the music.

Question of the day:  What are your favorite ways to recharge and take a break?  Let us all grow that creativity together.    

Sunday, March 26, 2017

Sunshine Sunday

About five years ago I drove to meet my Godson.  I remember that drive vividly, telling myself that I could do it, that I wanted to do it, that my grief and broken heart could wait a few days.  It was clearly a life changing event. Andrew is a reminder that there is so much joy and brightness in the world even when it feels dark.  That trip and the conversations I had with my best friend during that time inspired this blog.  

This weekend I set out on another trip to celebrate his birthday, wondering if I could make it.  I had not driven that far and long in a car since my diagnosis.  In fact I was scared to do it, I was scared that my bladder would not be able to handle the journey.  In the end I made it there and back again.  There were some really difficult moments during the drive but in the end it was worth it.  

Happy Birthday, Andrew!  I can't wait to see what else your birth inspires in this world.  I already see how much it inspires your sister to be gentle and aware.  

Thursday, March 23, 2017

Starting over..

We moved a month ago, and things got pretty chaotic and unsettled during that time.  I wasn't working out regularly, made some mistakes with food and was running back and forth between two different living spaces.  Adam and I hustled to get out home ready to be put on the market and at the same time did our best to settle into a new space.  Although I still maintained some regular practices and a work schedule, I was constantly feeling like the floor was going to drop out from me.  

I am still in a bit of that in between time, leaving one thing behind and walking towards something new.  That little bit of tug of war, this is where I want to go, but back there is where my needs were met.  We lived in the same house for over 10 years, and it is easy to forget how long it took for that place to feel like "home."   Was it the point when we started hanging up photos?  Was it when we bought a couch and some furniture?  Was it the first time we heard Sterling running around at night trying to find us?   I wanted some sort of metric to decide "it is going to be okay."

Even though I was ready to move out of that house and into a move space there has still be a lot of grief, a lot of giving things away and saying good bye that I didn't expect.  Added to that feeling is the uncertainty of a new space, the intimidation of decorating, of changing things around and transforming into something new.  It is a gap, it is an uncomfortable place where I just need to keep going, keep adjusting the compass to what I want.  

This week I have really made it a point to find time in my day to do a regular physical practice, to go to a new class or sit down and relax in the new apartment.  Just sit, don't worry about blank space, or that it is still a mess, or that I still can't remember where my socks are.  This morning I went for a walk, I am a bit ashamed to say it has been a while since I went for a good long walk out in nature.  After about a mile, my muscles were protesting, and my breathing was labored.  So I turned around and headed home.  

Knocking me out of my stories was this beautiful peacock.  It had to jump out in front of me to get my attention.  I watched it twirl in the driveway for a few moments and found one of those moments.  That moment when it feels like you arrived somewhere, that something let go, that the miles to go don't matter.  Maybe this will be one of those moments when this new space starts to feel like home, or maybe this is just a gift of being present and realizing the floor is not going to drop out from under me. 

Question of the day:  What can you find in your day that tells you the ground is stable and supportive?

Sunday, March 19, 2017

Sunshine Sunday

I feel like this week should be remembered, it was one of those weeks were everything was going to fall into place and we would be able to stop putting so much salt in the wounds of the past.  However it didn't work out that way, it was a rough week full of bumps, bruises and a lot of hard work.  

At the end of it all Adam and I are celebrating the fact that the house is completely cleaned out, we have a couch in the apartment, we started hanging up some art and photos and we got to have a long overdue date.   Honestly, it has been a rough week and I want a week to sleep.  When it is difficult to enjoy the ups and downs of this rollercoaster life, I am extra thankful for moments like these.  

Wishing everyone some time to treasure those moments of peace and harmony this next week.

Thursday, March 9, 2017

Worth

There is a parable that appears in the Gospel of Matthew that has frankly always irked me.  I am going to summarize it really quickly, and forgive me I am far from a biblical scholar.  The parable of the generous employer.  The employer hires farm workers to help with the harvest at different times of the day.  At the end of the day all the workers line up and every man receives the same wage.   Every man no matter how long he labored, receives enough to feed and take care of himself and family.  

Because I am not a biblical scholar, I will leave the interpretations of grace, generosity and redemption to them.  However I was thinking about this parable a lot yesterday while I was lying in bed.  I had hit a point of exhaustion and needed to rest.  There is a lot going on right now and I left Adam to handle a lot of things, and I felt worthless, useless and selfish for taking time to be in bed. 

I started thinking about this parable differently, what if all the workers are just different aspects, different expressions of myself.  Sometimes I show up bright and early and work the whole day and some days I am glad to sleep in and work a few hours.  But I value that person that works the whole day so much more then that person that needs to or even chooses to spend time resting, relaxing or resting.  At the same time both are expressions of me, both are me and if I truly want to live my life like I am valued and love able, I need to accept and embrace all of those expressions of me.  

What does that look like?  How do I change that internal dialogue that constantly comes back and tells me my illness makes me inferior to who I was before?  How do I stop that comparison?  I have no idea.  Attempting to change that internal dialogue, that constant chatter is something that evolves slowly for me.  That being said I have learned the best way to change that internal dialogue is to make different choices, even if it is for a moment.  It adds up and slowly those little gremlins dissolve into the light.  

At that moment when Adam asked what he could do, instead of going into a rant about how I felt worthless and apologizing.  I simply said "please, take care of the house in such a way that I don't need to worry about getting it ready for painting."  Magically, Adam got up and headed to the house to take care of moving furniture, removing screws, remaining pictures and all the other little things.  Magically things got done and handled and no one fell apart.  Yes I still got to spend the day with that internal dialogue but I knew that making that simple choice would start to shift it.  

That one simple choice gave a voice to my worth, and acceptance to the fact that I am not simpy worth it on the days I labor all day.   My worth doesn't change and it is time I started to be my own generous employer.  

Question of the day: How can you honor an aspect of yourself that you don't typically value, even if just for a moment?  

Sunday, March 5, 2017

Sunshine Sunday

During this recent move, Adam and I have been letting go of a lot of things.  Moving to a smaller place, means that we had to prioritize what we are using, what we need and what can be passed on to someone or some place else.  I make it sound so simple, so cut and dry.  It has been a ton of work and a ton of emotions.  

So when I stumbled on a few of my old baby blankets today I spent quite a bit of time in tears.  Every so often Adam and I find things we had put away for when we have children.  Through this process we have been gifting some of those things away, realizing that torn up book probably isn't worth keeping and various other choices.  When I found these old blankets, Adam told me it was fine to keep them if I wasn't ready to let go of them.  

I sat with that for a long time.  I imagined the future finding these blankets again and feeling old wounds ripped open, instead of being able to fondly look on these blankets.  So I told Adam about my blankets, and decided to gift them somewhere.  Maybe it is not about letting something go, maybe it is about acknowledging that these things are meant to be used, and allowing them to be passed on to someone.   

Maybe instead of letting some of these items go, we are passing them on to continue to be used and treasured.  

Question of the day:  Is there some salt in an old wound, that keeps irritating you?  Can you reform that story and look at that person, place or thing differently?  Can you see the true nature of it?  

Thursday, March 2, 2017

I am not alone

A week before I left, I searched for every reason to cancel my trip to the Spoonie Collective retreat.  I was in the middle of a flare, we were moving in about two weeks, I had important interviews the week I would come back, the worry was if I came back depleted there was so much to get done that everything would fall apart.  Adam finally looked at me and said "you need to do this, you want to do this, stop looking for reasons it won't work."

With all of those reasons and more I embarked on a trip to Vermont, to a Chronic Illness, Wellness Retreat, hoping to find some new connections and resources.  Wanting to be a part of the Spoonie Collective and spend time learning and sharing with other people about living with complex chronic illness.  

The honesty and vulnerability that people displayed was amazing.  Being able to be honest, to be able to say things out loud that I have never said to anyone before was freeing.  I am still in this crazy process of grieving an old identity, grasping on to it and forming a new identity.  For me it has been a pretty isolating experience, I am so fortunate to have a health care team that believes me and some extremely patient people in my life.  There is nothing like getting to talk to people and say "me too."  There is nothing like hearing someone's story and saying "I thought I was the only one."  

That was the strength of this retreat, bringing together people from different places, and different parts in this process.   Hearing people share their miraculous recovery, people sharing this worked for me but I get that it may not work for you.   One of the chefs even made me a small shepard's pie without carrots, I had tears in my eyes. 

I learned how healing it can be to hear and share stories, even if they don't end with "I got better."  Each one of the people I met is still living their life, it just looks so different and they still want more.  That is the gift of this illness for me, to remind me to keep improving, to keep growing and that everything changes.  

Here is a link for the stories that people told at a live storytelling event.  I hope one of them shows you that you are not alone and there is always someone who will listen.  

Question of the day: What do you need to share today?  What is something that you haven't said out loud that has been festering around?  Maybe just say it outloud looking in the mirror, in the shower, give it a voice.  


Friday, February 24, 2017

Focusing on the sincere questions

I was in Vermont a number of weeks ago, and haven't quite processed it all, so stay tuned for a post on the Spoonie Collective and my experience.  However one of the people I met, Joseph, is the founder and executive director at The You Rock Foundation.  Grateful and curious are not large enough words to describe what it was like talking to Joseph and hearing a bit of his story.  One part of this foundation is to have people post selfies with their message and mission.   One of the signs that you can print out is "I Matter Because...."  There is plenty of blank space to fill in your answer.  

I was really glued to scrolling through these photos and reading peoples different expressions, one night when I couldn't sleep.  The next morning, I woke up and did my meditation and some of those signs popped into my head, I immediately started crying.  So my practice that morning was crying, just allowing the tears to fall.  

Later while I was driving to work, I got a bit curious about the crying was all about.  In that moment, I didn't have a sincere answer to that question; "why do I matter?"  So while I was driving I started thinking of all the possible answers and nothing was sincere at that moment either.  Hilarious that I am driving to go teach yoga and I still felt like I didn't matter.  

So why write about this?  Why share?  Because this is a place I visit often, that feeling that I am easily replaceable to the people in my life.  I no longer live there, but I visit quite often.  Why?  Because it is a part of the human experience, there was nothing to fix.  I didn't start searching for the people in my life to tell me why I matter, because I was not in a receptive place.  It would've turned into an silly argument because I wanted to be "right."  So I just explored that emotion for my car drive.  

Now it is a number of days later, and I still find myself searching for a sincere answer.  However that is when it hits me, I don't want a sincere answer, I want the perfect answer.  I want the answer that will resonate with me for the rest of my life and that I can go back to every time I visit this place.  Guess what?  There is no perfect answer, there is the answer I have in the moment, the answer that helps me start building my steps out of the dark hole.  The answer builds on itself with each step, until I climb back into the light.  Asking the question sincerely and being receptive is the state changer.

Even my silly answers for example, "I matter because I gave my husband a kiss on the cheek and he smiled;" are steps and perfect in their own way.  The beauty of the idea about why I matter, is it can be fluid and dynamic, because I am fluid and dynamic.  

I asked Joseph how he came up with those words and he shared the story about coming up with a simple and powerful catch phrase.  He came up with "You matter. You're needed.  You rock."  His foundation "is committed to transforming survivors into thrivers."  Please check out the link, watch the videos and see how everyone has a story to tell.  Maybe you will feel inspired to start sharing your own stories in your own way.   

Question of the day: Why do you matter?  Embrace all the answers that come up, don't be stubborn like me and think there is a "perfect" answer.  Every answer is perfect!

Sunday, February 19, 2017

Sunshine Sunday

House is all packed up and feels a bit different.  10+ years of amazing and heartbreaking memories, glad I still get to walk with this man through it all.  I really love him

Monday, February 6, 2017

Sometimes I am just flat out scared....

Three years ago this month, I left for an adventure.  I traveled to the other side of the world to Nepal and completely fell in love.   I fell in love with the people there, the mountains, the lake and traveling by myself.  If you click on the link to three years ago, you will see my smiling excited face.

Fast forward three years and I am preparing my first trip by myself since my diagnosis. I am going on a retreat in Vermont hosted by Suffering the Silence, called the Spoonie collective.  Honestly I am excited but I am also scared and my mind is making up hundreds of stories.  

I have searched for every possible excuse to cancel this trip and Adam keep nudging me forward.  He keeps encouraging me and telling me I can do it.  It is going to be a leap into something I am really terrified to do, everything is set up for success and I still feel like I won't be enough.  

However, I love traveling and this is an amazing opportunity.  I am so lucky to have been chosen to attend and contribute to this event.  I have been inspired by so many of the stories on Suffering the Silence, I can't believe that I get a chance to tell my story before a live audience.  I have to take this chance.  

In some ways I feel like I owe it to that person that traveled to Nepal three years ago, excited, scared and came home full of life.  I owe it to that person that loves adventures and going into discomfort.  

Travel doesn't look the same anymore, I pack a lot more stuff, and I travel with catheters and medication; but I can still do it.  Now is my chance to prove it to that stupid little mind that I can still do the things I love.  This is my chance to remember I am not defined or limited by my condition.  

Question of the Day: What do you love to do?  How can you make that experience happen this year?


  

Tuesday, January 31, 2017

Space

There is a space between making a decision and finally seeing the outcome of that decision.  Sometimes the space feels like it is barely noticeable and sometimes it stretches out and feels like an eternity.  Waiting, prepping and trusting that when the time comes I will be able to actually follow through with that decision.  

What am I talking about?  Adam and I made the decision months ago to move, actually we had been talking about the decision for a long time, but we didn't know how Sterling would handle navigating a new space without his vision.  When Sterling passed away there was nothing holding us to our home, except we didn't have a place to go yet.  New jobs could potentially take us to different parts of the city.  The focus was on  tiny steps, cleaning out closets, going through stuff in the attic, many trips to Goodwill, half-price books, etc...   

Tomorrow we are making a furniture donation, and we recently moved things around to get ready for that.  There are vacant spaces in our house, it feels even larger now, we moved one chair out of our bedroom and the difference is significant.  Post it notes are coming off the walls, little notes we have left each other over the years, decorations are coming off the walls, slowly our home is becoming a blank slate again.  

I am a big fan of purging and getting rid of things, I feel lighter and better.  However, both Adam and I hit a place on Sunday after looking at apartments and understanding what 650 square feet looked like, where we were overwhelmed.  That space of feeling overwhelmed and just wanting to hide for reality allowed us to talk out our emotions and alter some of our plans.   It was an uncomfortable day, it was the day when we saw where this decision might lead and the reality of how many more steps there are until we are settled.  

I woke up Monday morning, and hid in bed for about an hour before going grocery shopping and getting the day started.  I took that space to stay cuddled up in bed, listen to Adam's breathing and try to tell myself it would be okay.  Because as much as this house no longer fits, I love it, there are so many great memories and things about it that are wonderful, but I still can't quite see what I am moving to.  Hence as Adam and I get rid of more and more things, that space I feel internally is becoming externalized.  

It is space to grow, to change and to let go.  Space, vacancy is pretty uncomfortable for me and now I see it in a lot of places in my home.  The space is also what needs to be leaped across in order to make a change.  It is leaping into a sea of possibilities and doing my best to fill the space with exactly what I want instead of just something.  It is taking the moment to pause, and remind myself I am worth patience and time.   

Question of the day: Where is there space in your life and are you taking the moment to pause, to fill it with what you want?




Monday, January 23, 2017

What does it equal?

Adam and I are going through a massive purge in our home, working to get rid of about two-thirds of our stuff.  It has been interesting going through some of the stuff that I have held on to throughout the years.  

I recently stumbled on a high school notebook filled with Anatomy and Physiology notes.  I really enjoyed that class but I couldn't understand why in the world I hung on to this notebook.  When I opened the notebook the notes on pain were dog eared.  My Anatomy and Physiology teacher had spent years researching pain, and therefore a lot of these notes were pretty extensive about which nerves are responsible for transmitting pain, and the various biochemical reactions.  However the thing that caught my eye was "chronic pain = bad."  

It was in a section of notes comparing the difference between acute pain and chronic pain, discussing the lack of homeostasis involved with chronic pain.  I immediately started laughing and told Adam apparently I held on to this notebook for years, for this moment.  A moment when I could laugh at how simple I found life, how easily I split things up into black and white.  That moment when I could laugh that chronic pain sucks, but it not necessarily "bad."   

I think it is safe to say I have a bit of experience with chronic pain at this point, so what does it equal?  I could still discuss the biochemical reactions, the nerves transmitting signals, which parts of the brain interpret those signals, ect... 

However chronic pain = pain, it is not good or bad, yes it might mean some part of the body is not functioning like it used to, but that doesn't mean it is bad or broken.  It means that I take care of myself differently then I used to, it means I have additional information about what my body needs and how to treat myself.  To be honest it also provides me motivation to move, to keep going and to continue pressing on.  I have reprogrammed my mind, I have decided that pain does not mean I am bad, and I continue to execute that program everyday.  

Sadly this is not a skill that "I can set and forget,". It is a skill that is tested time and time again, it is the skill of accepting personal authority.  No one can tell me, it is okay to push it or it is okay to rest; no one can tell me the impact that will have on my well-being.  Each and every day is a new day, and I get to decide what to do, sometimes I need to talk it through, sometimes I ask for advice but in the end I make the decision.  I make the decision which workout to do each day, which foods to eat and what to do with my time.  

The day my doctor gave me my diagnosis was pretty unsettling however at the same time I remember feeling hope, the hope that I could do something.  Hope that I could help my body, it was information that would lead me to be able to live an amazing life again.  That day my doctor gave me back my authority to relearn to take care of myself, she helped me see that I just had to gather additional data to navigate my life.  

Yes I smile through the pain and I laugh at the little jokes provided by my past because I have hope and I keep my focus on gaining more skills in taking care of myself and learning how that will help others.

Question of the day:  What is an equation you once believed that has been rewritten?  How has your personal experience expanded the world from black and white to multi-colored?

Friday, January 20, 2017

Invisible

This post has been simmering for a couple of days, a recap of the race weekend.  I didn't want to rush it and this past week has been a little bit of hustling to catch up and finding time for recovery.

The first race was on Saturday, so my alarm went off around 3:00 AM, we were supposed to be in the corrals at about 4:00, and it takes me a bit of time to get moving in the morning.  After Ashley and Adam got dressed, we headed downstairs to grab me a steamed milk and to make our way to the race area.  It was pretty chilly and thankfully Ashley had bought a blanket for us to sit on in the corral and to wrap ourselves up in.  The official start time was at 5:30, but since I was in the last corral we wouldn't start until a bit later.   Ashley and I spent the time chatting and Adam practiced different breathing to stay warm.  

We made it to the start line, heard a little banter and we started.  It took time to find a place in the crowds we were comfortable, and watched people run around us.  The race felt a bit rushed a claustrophobic to me, I didn't feel like there was much time to take in the sights.  My focus was really on finishing the race, on getting to that finish line, so my experience for the start of the race was a little biased.  

At one point in the middle of Disneyland, a bit of a panic started as someone shouted we were two minutes behind pace.  So our group started running, I wanted to get away from the crowd and the anxiety, I wanted to finish.  I was also confused because the last mile marker we passed, stated we were two minutes ahead of pace. So I ran, I ran without thinking about my breathing, or paying attention to my body until we hit the next mile marker that said we were ahead of pace.  The crowd calmed down around us, and we started walking again completely confused about the miscommunication.  Shortly after exiting Disneyland I started feeling bladder spasms.

Then the moment came when we got passed by the Pacers and I told Ashley to go on without me, I couldn't keep pace anymore.  Adam and I started walking slower and slower through the back lots.  Finally a little after mile 5, I stopped, I stopped right in front of a group of people cheering us on.  The tears started, tears for the pain, tears of gratitude because I made it, tears for pushing my body in a not gentle way and tears for the multitude of emotions I felt during the race.  As Adam and I stood there waiting for a medic, I was keenly aware of how invisible my illness is.  I kept hearing the crowd cheering us on, not to give up, to keep pushing and finishing wasn't worth the cost.  

There was nothing visibly going on with me and the tears quickly stopped.  I have gotten amazing at smiling through pain, I have learned to breathe through the pain and I have learned when it is time to stop.  Standing there I wanted to shout at the people, that even if they couldn't see I had a reason for stopping.  I wanted to tell them how hurtful it can be to tell someone to "keep pushing."  I wanted to tell them there was nothing wrong with not finishing a race, that it is okay to honor my pace.  So Adam and I talked about our favorite things about the race, we talked about the fact that each mile is an accomplishment and he thanked me for stopping, for playing with my limits and for listening to those edges.  

Sunday was a new day.  The beauty of my illness is that I never know what a new day will hold.  So I woke up again at 3:00AM and got ready for the half-marathon!  Ashley was in a different corral then me and so we spent the time waiting for the race individually.  I crossed the start line at 6:30 and with a giant smile I started walking and looking for that first bathroom stop.  (LOL, it had been a long wait in the corral tha morning).  I stopped to take a few photos, I got super excited when I saw Darth Vader and shot a brief video for my friend.  Looking at the race photos, I have a giant smile on face, just taking in the music, the sights and my breath.   

I had to stop at almost every bathroom and there was usually a line, so I sent Adam some photos.   I couldn't believe as I left Disneyland that I was still feeling great and had more in me to keep going.  Then, I saw Adam waiting outside to cheer me on, drinking his coffee, and I had to run up to him!!  I was so touched and excited to see him, that he went to the effort to look at the race map and try to estimate when I would be there.  I had a few tears in my eyes as I left Disney property and entered the streets of Annehiem.  

I crossed the 10K marker and was so overjoyed.  I knew my body could do it!  A little before mile 7, I started having some discomfort in my joints and took some time to stretch and adjust my gait.  Then I was passed by the pacers and let out a sigh of relief, surely they would be picking us up soon.  I was limping by that point and was ready to be off the course.  However I wouldn't get picked up until mile 9.   I walked 9 miles!  I walked 9 miles!  I honestly couldn't believe it, I earned that medal.  I pushed my body farther then I ever expected, no bladder spasms, a bit of muscle soreness and a lot of pain in my hip and knee.  

The person that helped me on the bus, told me he had never seen someone so happy to be "swept."  I smiled and told him, you have no idea what I accomplished today, the finish line didn't matter.  

Ashley finished, despite face planting at mile 11 with a new personal record.  We had a lot to celebrate a lot to be be grateful for!!!

The beauty of these races is the state of joy they can put you in, as long as you take deep breaths and look around you from time to time.  There are people cheering, epic music and characters everywhere, it is Disney Magic!

Question of the day:  What are you proud of today?  Take a moment to share it and don't keep it in that invisible space.  

Thursday, January 12, 2017

7 miles in...

Way back in 2014, I looked at Ashley and said "I will do it again."  Seven miles in, 10 miles in, 13.1 miles in and even shortly after the finish when some of my tendons were protesting and I was having trouble walking.   I had no idea what was coming, optimistically, foolishly, happily (all these words and more come to mind) less then a month later we signed up for another two races back to back.  I recently looked back at my journal from that day and there was no doubt that come 2016 Ashley and I would be crossing the finish line together for both the 10K and half-marathon.   

I spent a great deal of time feeling angry with that aspect of myself, that woman that imagined and believed I was capable of so much.  She made this plan, she expected my health and fitness to continue an upward trajectory.  She was in a place filled with light and was able to expand her focus to countless possibilities.  In a few months I would feel plunged into a pit of narrow focus, as health became my priority.  I wouldn't even show up to race in January 2016, though Ashley kept me with her and I celebrated her crossing the finish lines from a cozy bed.  

In June of 2016, I met that optimistic, foolish aspect of myself and signed up to race in 2017.  Though there was doubt, that certainty that I could do it was gone. Now the idea was to see what would happen, to allow myself to be open and to keep my focus on my health.  

This past week I have found myself angry again with that woman who signed me up for these two races.  I did my best, I followed the training, listened to my body and I still have no certainty about how my body will perform.  I know my limits, I know I am capable of finishing the 10K in a good solid body, I know that completing the half marathon would be too much.  But I also know that it is common for me to hit walls and need to stop.  While I was packing and starting to feel the excitement of the race I started to crave finishing both races.  I could feel that desire to prove that I was still who I used to be.  

Failure is right there, the word, not an action.  The mind lying to me and telling me that I am a failure, for not being able to complete this challenge.  The mind telling me I have made no progress, the mind wanting to keep me in a dark pit.  That is not what the darkness is for, the darkness is not place where perfection lives, it is not free from failure or pain.  Darkness a place to reflect, to recover, to take time to grow and it is a place to leave.

I decided to write her a thank you note, a note to that woman that I have the pleasure of meeting again and again, the dreamer, the creator and the faithful.  She would understand the anger, she has gone through it again and again.  She understands the pain and glory of goals, she sees the spectrum.  She understands that "success" may not equal joy and "failure" may not equal grief.  

Writing my thank you note brought light to the lies the mind is telling me, and allowed me to realize that I was feeling more than just anger.  This was never about the race, this has always been about discovering what is possible and spending time with some of my favorite people in the world on a giant playground.  The light of honoring each other's pace and our own pace and knowing that in the end we will laugh AND cry together.  

Question of the day: What aspect of yourself do you notice meeting again and again?