Saturday, December 31, 2016

New Year's Eve

I have been considering this year a lot, it has certainly been a rough one. I was thinking back on the past couple of years, and 2013 was certainly one of the most heartbreaking years.  However I was so optimistic that New Year's Eve, I could see all the ups and downs of the years and I was excited about what the future was going to hold.

This year on the other hand I am still in a bit of limbo.  I am excited about the future, but the future is still really foggy and out of focus.  Adam and I have been planting and nurturing lots of seeds, but nothing has quite started to sprout.  This winter the focus has very appropriately been about cleaning things out, taking inventory and being quiet.

Time is a strange thing, for me New Years Eve has kind of been about tying up loose ends of the year and looking forward to the presents of the New Year.  It is difficult to do that, because this year won't be tied up in a nice little bow, too much is still up in the air.  Too many process are still ongoing.  It is almost like I am getting a lesson on letting things happen in their own time instead of when my impatient self wants them too.

Even though a lot is in limbo and I am focusing on nurturing my little seeds there are still some great plants that bloomed this year.  I became more honest about my condition and pain level, I learned to better communicate with my doctors and other caregivers, I celebrated my ordination as a Daoist priest and I became a contributor to The Mighty.  Adam and I are learning to travel and explore while at the same time respecting what I need and despite dislocated bones, sleeping a lot and crying in airports we have come back with amazing memories.

We also said good bye to Sterling.  Adam and I go back and forth still between grieving and accepting.  That is still processing, we miss him so much.  However we are so grateful for the time he was with us and how much love he brought into our lives, that will continue on.

As I look towards 2017 and see the opportunities of moving, new jobs and new adventures, I trust that the future will begin to come into focus and Adam and I will get to open some great presents in the next year.

So where is my focus?  On patience and trust that everything is unfolding at the perfect time.  It has taken a lot of experience for me to really believe that and so I am grateful for this year of change and feeling stuck in limbo.  

Question of the Day:  Expand your focus into those fuzzy areas of your life, what do you want to create there?  Dream big and allow for the creativity to flow into that area that is not quite in focus.

Monday, December 19, 2016


Adam suggested that I put a warning before this post.  I will be talking about medical treatments that might cause a bit of a trigger in some people.  Just to let you know if you decide to keep reading.

Thursday nights tend to be my treatment nights.  So what exactly does treatment mean?  I have been a little vague about this, mostly because the treatments cause people to cringe.  When I was first diagnosed I was seeing a therapist to have someone to help me talk through a lot of the emotions and things that were going on.  Even my extremely funny and low key therapist looked at me and said "why in the world would you do that?"   Just to give you an additional warning.

Once a week I deliver my medication directly into the bladder.  This involves catherization, which I do myself.  Adam and I have come up with lots of jokes and ways for me to laugh through this process, to accept that it helps and so it is worth it.  There are plenty of risks associated with administering this medication, but I haven't found any medication that doesn't have some sort of risk.  I am extremely grateful that it is a method that works for me and even if it can be messy, painful and awkward.

This last Thrusday, the treatment did not go smoothly.  I ended up having to use multiple catheters, wasting a dose of medication and feeling utterly alone.  I didn't feel like I could call someone, because I didn't know of anyone that could relate at that moment.  I felt detached from "normal" people, I wanted to protect myself and I felt this huge wall between me and that life I was still grieving.  The tears started...

Eventually I reached out to someone, and because this person is much wiser then I will ever be he simply asked me why "protection."  It is a good question.  I don't need protecting, I was not afraid of anything.  My body was responding to being poked and prodded, it doesn't know what it medicine and what isn't; so it is reacting, releasing neurotransmitters that say "WTF."   So of course my reflex is to want to know what's wrong, to want protection.  

I kept thinking about this for the hour that I am supposed to lay on different sides and make sure the medication coats my bladder.  My body it releasing a lot of "WTF" a lot of the time.  The pain is going down, I am ecstatic when the level stays at a 5 for a couple of hours.  I am so happy that I am sleeping for five hours a night sometimes, but my body still has a while to go before "WTF" is not my set pattern.

The old part of my brain wants to keep pain private, because it might be a sign of weakness.  Even if part of me accepts that I am not my illness, it takes effort and will to overcome all those neurotransmitters that are constantly being released.  It is almost like split myself in two, I need to be fully consious of my breathing and posture and at the same time need to focus on everything else.  When the pain spikes it is a not so gentle reminder to check in with my breathing and posture, which means I tend to tune a lot of things out.  That is where I am right now, learning to breathe and navigate the world.  

My heart whispers to me, it comforts me, it encourages me to reach out and it encourages me to find new ways to soothe those neurotransmitters.  My heart is the stable, calm eye of this hurricane, but it also knows there is a hurricane.  Slowly my heart is helping to establish and reinforce that new neural pattern, that I am not my pain, or the failures or the successes.  Slowly my heart will guide me to dropping more and more walls and trusting the breathing and posture will be natural.  

Question of the day:  Who in your life is safe to reach out to?  Who or what understands that you are not broken, you just need a bit of stability in the hurricane?

Thursday, December 15, 2016

Rebel Challenge

I have been feeling pretty down lately, just in a bit of a funk and honestly the holidays don't help.  While I was doing my best to write this weekend, all I could come up with were ways the holidays are difficult for me.  It didn't help with the funk.   The writing wasn't going anywhere and it wasn't helping me figure out a better filter to use, some way to change my focus.  I stopped writing and waited for inspiration to strike.

This morning I was training, and realized how close the race is.  In about a month I am going to Disney!  I signed up for 19.3 miles, the rebel challenge and I know I won't finish.  It is not kind to my body to push it that much and I work everyday to do what I can.  Honestly it is a bit upsetting, accepting my limits, I have yet to make peace with them yet.  There are days I long to go for a long run.

I was considering my tendencies and thinking it might be difficult for me to start a race (the half marathon) that I won't finish.  Mostly because I have a lot of ideas about failure, about needing to push myself, about all or nothing.  As I kept running through all my stories about failure and expectations from myself and others I came up with a different challenge.

I like a challenge and truthfully I love a rebel.  Since it is not wise for me to finish the rebel challenge I decided to make up my own rebel challenge.  To rebel against my mind and the story it tells. Because I want to and will celebrate this upcoming race regardless of what happens, celebrate that my body has recovered enough that I can walk 6 miles, celebrate that I no longer collapse in bed after a long day and celebrate that my body is getting some rest and relaxation.  

Here are some quick examples of the lies my mind is telling right now:

1. You are a failure for having to go back to physical therapy again.

2. Performance and finishing are all that matters.

3. No one is willing to be around you if you are crying.

4. You are only safe if you are small.

5. No one will take the time to listen to your real answer about "how are you today?"

6. This is a stupid idea.  (hee hee)

This is just a few examples.  How do I rebel about these lies?  Not really sure.  I can tell you what I will first play with and we will see how it goes.  This is not about seeking to prove the mind is wrong.  This is seeking to not let the story control me.  This is about me making my own decision.

Here is one example of how I see myself as rebelling against the story.  I have been seeing my physical therapist again to work out some issues that have come up.  Mostly it seems to come back to my breathing.  I tend to contract my muscles, diaphragm and pelvic floor when I inhale, it is not natural for me to relax them.  It feels unnatural to allow everything to expand as I inhale to me, probably because I have this story that I need to be small to be safe.  My body still has that pattern, I bring more awareness to my breathing.  I pay attention and slowly I am gaining more competence with a different type of breathing.  Celebrating the fact that I have something to work on that will make a difference in my quality of life. 

Question of the day: How do you want to join me in the rebellion and celebrate what makes you unique and YOU?

Monday, December 5, 2016


It feels like this time last year I was tossed out of an airplane without a parachute.  As I imagine anyone would do, I started grasping for any bit of certainty, frantically looking for that parachute.   Afraid of disaster at every turn, a normal reaction to change, it activates the survival part of the brain. Looking and testing everything because something might be out to get me.  

At some point during the year I noticed there was no more gravity, I wasn't plummeting to some untimely disaster.   I was okay, I was in pain and exhausted but if there was no gravity I didn't really need a parachute to protect me from ending up splattered on the ground.  Believe me I still felt like I was falling, I just wasn't accelerating.  It was almost like there was seen and unseen help being offered along the way to remind me to trust.  

Despite the fact that I feel like I am falling, there is no gravity.  Despite the fact that I feel like all I am is the pain, I am also the person asking for help.  Despite the fact that I feel like I am grasping at a parachute that is not there, I am still being handed tools.  

As the year progressed, I found useful tools, I tried tools that weren't useful and things continued to fall away.  Eventually it felt like there was no longer any ground as more events happened through out the year.  I was in this difficult to describe space, hence me searching for metaphors that I know nothing about, having never actually jumped out of an airplane.  It was the space where my life was different, where the future was uncertain, where I didn't put so much focus on "why?," and at the same time I was aware of the fact that it was okay.  

Of course this sounds like a wonderful linear progression, it is not.  There are still times where I am frantically grasping for a parachute, where I desperately want there to be a parachute.  I just spend a lot more of my time aware of the fact that I am okay even though it feels like nothing is okay.  

Some days I long for the illusion of being on the ground before I ever got on the metaphorical airplane. The illusion that pain is something to be fixed and that you can go back to the person you were, but who doesn't long to go back home?

Question of the day:  How can you focus on being a bit kinder to yourself today?  What in your world needs a bit of appreciation?