Monday, August 29, 2016


We live in a world surrounded with social media, advertisements and the desire to always be more then what we feel we are.  Life moves very fast, and there always feels like there is more we should be doing.  I tend to feel like I will get left behind and be replaced because I am not able to keep up with such a fast moving society right now.

I was walking through the grocery store last week, remembering how good toast tastes.  I was looking for something to help settle my stomach and a bit of comfort food.  I found myself grabbing the usually veggies I eat because I have that pattern and looking longingly at the bread.  I started thinking about the foods I eat now and wondering what might satisfy that craving of bread.  Mostly I wanted my stomach to settle down, I wanted to feel better and at some point in my life toast was the magic cure all for nausea.  

Times have changed and there are other things that help me with nausea, so I focused on those.  While I haven't had much of a reaction to gluten the few times I have had it, I have learned it is better not to experiment when foundations are already low.  

The flip side of that is when foundations are low is when I am most aware of all those temptations.  Whether it is lack of sleep, a hard day of work, or just lots of little pebbles of stress, there is a tipping point.  That is the point and the edge where willpower feels exhausted and skill becomes a necessity.  The skill of knowing thyself, I didn't get bread because I know it does not makes sense when I am not feeling well to add more unknowns in the equations.   If I had chosen to get bread, it would have been because it made sense to me that it would help with the nausea.  Neither choice is wrong, it is simply a matter of understanding myself and identifying what I need.  

A couple of months ago I had a bad reaction to some medication and got extremely sick, and honestly was not able to even stomach any other food then some toast.  So Adam went out and bought me some bread, because I didn't know what else I could eat.  It made sense.  

The next time you find yourself eating something or buying something you "shouldn't," ask yourself "does this make sense?"  Being able to understand what you want, what you need and the context of the situation have helped me approach temptation with much more clarity.  

In the last year, I have changed my lifestyle, what I eat, what I wear, what I do for fun and it is not the first or last time in my life that things will change.  I am no longer the bull in the china shop, velocity and force are not terribly useful when it comes to my health.  So it will remain one step at a time, and I will continue to learn patience and trust even while I feel like the world is passing me.   

Question of the day:  Look back at a moment when you gave in to temptation and felt guilty about it. Zoom out of that moment a little bit by taking out the emotion and look at the context and the outcome.  Did it make sense? Did you learn something from it?  

Saturday, August 27, 2016


I have been getting a lot of support an encouragement from friends about my writing lately.  It has been awkward for me to hear from people that have been reading my writing for a while now, to hear people tell me that what I write about make sense, to have people thank me for being open about what my journey and experience have been like.  For most of my life I have wrote things down, it has been a helpful process for me to gain clarity and understanding.  However I never thought my writing was anything unique, that I had anything to say of value.  

I decided to challenge that belief and all the voices in my head that were telling me people were just being polite and kind.  I decided to apply for a writing position, and anxiously waited to hear back.  Based on the title of this post, it surely comes as no surprise that my application was not accepted at this time.  

When I saw the rejection notice, immediately all those voices started screaming "we were right, you have nothing to offer."  I did the only thing I could think of, I started writing.  I keep writing through the tears, so forgive my mistakes in this post.   I have nothing to offer that specific company, at this specific time right now and I may never be a professional writer or even a "successful" writer.  But it is not going to stop me from writing, from sharing.

There is a saying "when you feel discouraged, encourage others."  I don't feel like encouraging others right now, because I don't know what I would say.  By sitting down to write, I am encouraging myself, I am reminding myself that there is value in what I have to say.  My writing has been rejected before, many, many times and I am still writing.

It hurts and those voices have more fuel to say hurtful things to me.  Here is the proof that I can feel discouraged and still write, that I can feel hurt and still keep going.  I made the mistake before to stop writing and sharing, so today maybe I will make a new mistake.  

Question of the day: How do you respond to discouragement?  

Tuesday, August 23, 2016

Words and their meanings...

I struggle with language a lot.  I struggle with definition of words (just ask Adam about the "Petulant horseman of the apocalypse"). As I figure out what my diagnosis means to me and how to describe my condition to people when they ask, I find myself being very confused about terms like sickness, illness and disease.  

I don't feel like I remember I used to feel, I kept looking back to the past like it was some sort of "gold standard".  I kept looking at a distorted past to compare and from that illusion decide how I feel and how I thought I was doing.  This means I am still struggling with feeling and honoring my body as it is now.    

For example, I was at my physical therapist office last week, and she released me from care.  She was amazed at the "transformation" by body has been through in the last ten months, with two different therapist with different techniques.  She kept telling me "you must feel great, there is so much more mobility in your spine, in your pelvis, just in the entire body."  I really didn't hear her at the time.  

However while I was driving home, I kept hearing what she said.  I started to consider what she was telling me.  I keep looking to the past for a measurement of how I am supposed to be, of what healthy looks like; I keep thinking about all the things I am not longer choosing to do and realizing those choices helped me get here.  Keeping the discipline of working out, stretching, resting and being ruthless about what I eat and don't eat lead me to that moment.  To a moment where someone who puts their hands on people all day, and asks them to move and use muscles is able to say that my body has "transformed."  I finally heard her.

I took the time to allow that to sink in, to really appreciate her world and understand where she is making that statement from.  When I was diagnosed I was never promised I would be able to eat oranges again, that I would be able to do all the same activities I enjoyed before; my doctors, my therapists, my friends and other healers promised that I would transform, that I would change.  My friends with experience with this condition or other chronic conditions promised me that I would slowly find things that helped, things that made it worse and eventually I would be a different person.  No one promised it would be easy or smooth.  No one said I would like it and that I would continue to experiment and learn for the rest of my life.  

So forget sick, ill or disease and let's talk about what the word Healthy could mean.  Because I can decide if I am healthy, limitations do not change my health, it has just changed what healthy looks like now for me.  If I look back to a year ago, I was teaching 6 yoga classes a week, two shifts at the advocacy center, two shifts at hospice, I was traveling, I was in this constant cycle of taking medications that were treating symptoms, and I was using food and all the activity as a distraction. Honestly, I wasn't really healthy.  My body finally got my attention and my life got to change.

What does healthy mean to me? Adam and I have time to play and relax, it doesn't matter where we are.  I have energy and the ability to do the things that truly bring me joy.  I am able to enjoy food.  I have dreams that I am excited about and feel able to pursue again (not focused on the deadline, just taking steps.).  I am able to take care of Adam, Sterling, myself and the house to reasonable standards.  I feel comfortable advocating for myself and communicating what I need.  I have the space to recover and take care of myself.  

Question to consider:  What does healthy mean to you?

Friday, August 19, 2016

Islands of Safety

When I was first diagnosed with interstitial cystitis in October I came across a book that I devoured: "The Body Keeps The Score" by Dr. van der Kolk.  The book was filled with the author's experience encompassing over 30 years of treating trauma and understanding how trauma can be stored in the body.  Reading this book inspired me to attend a trauma sensitive yoga class, because I was not ready to go back to a studio when I graduated from physical therapy.  I didn't feel very safe in my body, and unlike many times before when I have been uncomfortable with something, I wanted to change my relationship with my body.  I was curious how this type of yoga might provide a safe platform for me to get to know my body, to track sensations without commentary of "good" or "bad."   

I ended up really loving the teacher and feeling like this type of yoga was exactly what I need right now.  Last week in class. She mentioned that if sensations in the body get overwhelming, to bring your attention to the tops of your hands, or the bottom and tops of your feet.   These areas of the body can be referred to as "islands of safety,"  a lot of times when one starts to feel overwhelmed the vagus nerve is overstimulated, and so this technique brings attention away from the core of the body.   

When she said that cue, I realized how little I feel sensations in the tops of my hands.  My attention is generally so focused on my core and what are my abdominal muscles doing that I have not practiced feeling sensations on the tops of my hands.  So I have continued to practice bringing my attention to these little islands of safety over and over since that class.  Usually I don't feel the tops of my hands, and my job is to not attach any story or meaning to that lack of feeling.  

This week has been rough, I haven't slept much and neither has Adam.  The other night I just kept asking him to take me away, to take me back to Colorado.  I slept really well when we were there, and I love to play in the mountains.  So he understood me, he understood that I am losing patience with myself, he understood that I needed to rest and play.  It is hard to rest in a body that doesn't feel "safe."   My last post I talked about how I live with this mind that is trying to kill me, however sometimes I also feel like I live in a body that is trying to kill me, which doesn't help me feel safe.  So I have been thinking about "islands of safety", in my body, in my house, and in the world.  

What is the state of safety?  How do I create more of that in my life and really let go of this story that my body is the enemy?  Because it is not the enemy, it is communicating with me and I don't speak the language very well, I just started learning about it.  Seems strange to say that I am 35 years old and just starting to listen to my body now.  

So when the time is right Adam and I will head back to the mountains, to give me a bit of respite and maybe help me really understand what "safe" is to me right now.  Because I believe I am safe, I am taken care of, and I am okay; sometimes I just don't feel that way, and I really don't like the way I feel.  

I appreciate the idea of "islands of safety,". It is useful for me to have that phrase in mind, and to look for that when I feel like I am drowning.  It doesn't make the pain stop, sometimes it doesn't make me feel less stressed, sometimes I freak out because I don't feel the tops of my hands, still I continue to bring my mind back to this idea of "safe and calm."   I might have to do it a hundred times in a minute, the mind wanders, but it helps me look for an anchor, to change my focus even if the effects are not measurable.  

Question of the day: When do you feel safe?  What is your language, focus and physiology when that state is noticeable?  

Tuesday, August 16, 2016

Waiting for Dawn

I was listening to a book today, and it brought up something.  The situation the character was facing he was able to control with his will, he was able to prevent something from hurting him, by controlling his focus.  Even though this story is a fantasy novel, and involves magic, giant lizards that breathe fire and other frightful creatures, I heard a metaphor.   The mind lies, my mind tells me lies that I am not worth it, that I am not enough, that it is always black and white, it slowly wants to kill my heart. 

However there are real threats out there, I drive in a car surrounded by other people driving cars and who knows how much attention at any given time any of us are actually paying to such a mundane activity.  I work at a place where I am thankful for the presence of detectives and police officers that are much more skilled and able to handle violence and threats when they come up.  Yet I go into both of these situations without thinking about the possible things that could go wrong.  There is some unspoken level of trust, trust that people are paying enough attention, trust that threats and violence will be able to handled smoothly and that the situation might not even come up.  

Yet it is these thoughts, these things that aren't real that have so much influence over my life some times.  When I am worn out and tired, weary, hungry, ect; it is harder to find the will.  That is when the discipline becomes so important to be free, to not listen to the lies, and it is when I fall down again and again.  It is when I am unable to see how to pick myself up, that it becomes one step at a time.  It is when I lick my wounds and retreat a little bit, however there is danger in that retreat.  It leaves me alone with my mind.   

I am a huge fan of Jenny Lawson, and she puts so much of this internal struggle into beautiful words.  She understands the grasp the mind can take and also the beauty that lies in both the darkness and light.  She has talked about how she has learned tricks and tools to not retreat into the mind, and she is also frank about when she is struggling, when she is working on picking herself up and when she needs help.  She has built an entire community of people that find a way to retreat and still reach out for comfort when they need it.  That it is okay to message your friends from a blanket fort in your living room, or ask your husband to hold you for a number of hours while you cry and scream, it is also okay to share your victories and celebrate those glorious moments when one steps back into the light.   

Those glorious moments are what shine like beacons to me when I retreat, and it takes time and patience but I always find myself going back to the light, it draws me.  The darkness might be familiar but it doesn't draw me like the light does.  So thank you to everyone who shines when I have retreated to the darkness of my mind, and to those who are patient and kind enough to wait for me to open my eyes and realize it is just thoughts and lies.  

Question of the day: How can you be furiously happy today?  What is one thing that will shine that light for yourself and others?

Friday, August 12, 2016

Common Humanity

Compassion can be a response to others who are suffering or are in pain, and to have a desire to help.  It also begins to open my eyes to the fact that everyone is dealing with challenges, no matter how "perfect" their Facebook page looks, or their clothes or their house, there is a challenge in their life.  There is something that drives them to keep going despite those heartbreaking circumstances.  It is recognizing that we are all here to love and support each other.   There is no room for comparison, for duality, there is simply the fact that we are all human, and each one of us is walking our own path.  

However I recently started wondering if compassion could also look like wanting to celebrate someone's joy despite your challenges.  Far to often I minimize myself, my accomplishments, and brush off compliments.  I believe people are only being "nice" or "polite" or following the social norm.  I question the sincerity of compliments, I never question the sincerity of insults.  However maybe when things are going "well" in your life and people want to be around you, they want to celebrate your joy, because they see that joy in themselves as well.  It might be hard for them to feel, or even acknowledge, because the mind is caught up in the drama of their life and their current battle.  The heart wants it all, it wants to acknowledge and accept each experience, the good, the bad, the messy, the tidy.   

Sometimes I hear people say phrases that have become noise, phrases that have started to lose meaning despite the intention behind them, because the mind is creating that divide.  The mind is telling me that, they couldn't understand, that I am alone in my pain.  Maybe they just don't know what else to say, and they want to find some way to show support, to let you know that they have felt alone and abdandoned too.   In fact in that moment they might be telling you, they feel powerless to help and all they want is to let you know that things change.  

I want to know when things will change, I want that control and that knowledge.  At the same time if I knew all the answers what would I miss, who would I miss out on meeting, what experiences would I avoid?  I have learned more about myself in the last year, then I probably ever really wanted to.  I have gotten to tune into a body that was not safe, and learn to find what "safe" can look like.  I have learned that even though I have experienced the pain passing, and that there is always something I can do, I still feel powerless.  I still feel helpless and I need people in my life to remind me to breathe, to hold my hand, or to understand when it is time to leave.  

I am not sure how compassion works if one fails to recognize the humanity in each person we come in contact with.   To accept who they are, not condone their actions, but to see that they are doing the best they can, and I have been that demon or angel too.  To realize "I am that person, that identity at times."   To realize these are all expressions of humanity and to approach others with kindness and compassion, because if I am able to recognize the common ground, maybe I will be able to see what the situation needs and the mind won't create the divide.  Even when I fall down, I am okay; even when I am falling down while trying to pick myself up, I am okay, even when I am walking upright I am okay. 

I think the trap is the impression: that it is easy to be kind, to be compassionate to yourself or to others.  It is a discipline and like all disciplines, it takes time to learn, it takes patience to become competent and the tests never stop.  That is the journey, to become stronger, to learn and to quote my good friend Patrick "make all NEW mistakes."

Question of the day: Look at an event in your life, that seems to be on a loop, good or bad.  Ask yourself what was your state like during that event, were you well rested, fed, hydrated or other needs met?  Then see if you change one of those foundations, for example give yourself some sleep or take it away and see if how the event played out might have changed.   Play!   

Wednesday, August 10, 2016

Free throws

When I was a very little girl I loved shooting hoops with my dad and brother on a plastic basketball hoop in the backyard, a hoop that was so close to the ground it wasn't long before my taller brother was able to dunk and games of horse weren't the same.  Eventually my Dad put a hoop in the front yard that was the correct height, and I would spend hours in the front yard.   

I would get so frustrated because I wasn't very good at shooting free throws, so my Dad started helping me.  He told me that a free throw is the easiest shot to make in the game, because it is the same every time.  He would show me videos of the most consistent players and point out that they always held the ball in the same place, they dribbled it the same number of times, they took the same number of breaths.   He told me shooting a free throw was just about doing the same thing over and over, it was practice.    

Looking back at that lesson and all the hours my dad spent teaching me to play basketball, volleyball and softball.  He stressed being consistent, having a ritual, and not allowing the surroundings to interfere with that ritual whether I was walking up to serve at a volleyball game, going up to bat or just stepping onto the court.   It was about being mindful, paying attention to what my body was doing so that I could reproduce the action or make corrections as needed.  

These memories came up last night and today as I really weary.  I no longer wanted to eat my usual meal, honestly I didn't particularly want to eat or do my evening stretches and when I woke up in the morning, I did not want to get out of bed.  I honestly did not want to go to the effort of making my tea, doing two hours of working out, making breakfast and then heading out for the day.  I kind of just wanted some pizza and chocolate.  

Changing my diet has been one of the most difficult things I have done.  I had a ton of leverage, it is worth my health to change my habits and what I eat, but there are times I wish I could grab that piece of pizza from the break room, or nibble on that piece of chocolate samples at the grocery store.  My consistency and persistance are the grace through this condition, the will to get out of bed and taking one more step, one more exercise, one more green smoothie or one more bite.  There is so much unknown about my condition and so much experimentation to still go through, however it is paying attention to my body, being aware of what I am doing that is going to put me in the best position to make those free throws.  

So just like my Dad told that little girl to pay more attention to what I did when I made the shot, than when I missed.  He was reminding me to store the successes in my body, to keep those muscle memories, to focus on being present, to focus on what I was doing and not was happening around me.  I now tell myself to focus on my health, to remind myself that I am slowly storing successes, that I am rebuilding that relationship, and to stop paying so much attention to the noise happening around me.  To accept that my health is worth it, it needs no explanation and there are so many more things that taste good besides pizza and chocolate.  

Question of the day: What rituals do you have through out your day?   What is something that tastes better to you then pizza or chocolate?  Mango has been one of my favorite treats lately, looking forward to being able to eat them again in a week.  

Friday, August 5, 2016

Letting go of self-definitions

I am slowly continuing my journey through Kristen Neff's book.  I say slowly because it is incredibly difficult for me to actually do the exercises and not just read through them and move on.  As one friend responded when I told her about this book "I never do the exercises."   That is a lot of what I do, I like words and language and knowing things, it is not easy for me to stop reading and give the exercises time.  For this exercise I am looking at a trait that I often judge myself for having, showing, displaying, feeling, thinking and all the other things.

This week has been a lot of ups and downs, I have really been uncomfortable with my current flare, impatient with lack of relief, and really impatient with lack of knowledge.  However one comment kept coming up again "I am weak."  I was apologizing to Adam over and over because I felt so weak and I needed his help moving around a couple of times.   He accidentally dropped me once because my legs just were not able to support me and he wasn't able to gauge what was going on and I wasn't able to communicate very well.  I said this over and over when I needed to take more of my medication then I like to, because I was miserable.  I chose not going to yoga so that I could give myself a bladder treatment, and I apologized again for being so weak and not being able to push through.   

Before I began exploring the questions to ask myself about the trait, I just wanted to figure out what does "weak" mean to me.  Why have I latched on to that word at this time?   I think it has a lot to do with me feeling like I let people's expectations down.  Expectations that I don't even know if they exist. It has to do with me not quite feeling at home or safe in my body, and so it brings up feelings of powerlessness and weakness.  As I talked about in my previous post, I am learning to listen to my body and it in a stage of transition and change right now, which is not comfortable.  

The first questions in the exercise involve how often is the trait displayed, what circumstances bring it out and am I still me whether or not the trait is displayed.   The thoughts come up very often when I am dealing with a flare, and the fact is I am weak in someways, my body is reallocating resources to repair my bladder lining, to process the additional cortisol and other hormones released in the body and so I may not have the resources to get through my entire workout, drive or see people.  I mentioned this in my previous post, about picking battles I want my body to be taken care of, not win battles with my mind.     

For me this process of understanding these traits that I judge myself for and beating myself up for is coming to terms with where is the root.  Maybe it is acceptable to feel weak and display that trait at times?   Maybe my body is telling me "be gentle," and here I am increasing the cortisol and other hormones because I feel ashamed and disconnected.   

At any given moment thousands of feelings and thoughts pass through my body and brain, which ones get latched on to, are the ones I act on.   Sometimes those feelings are just because of the path of least resistance and I have practiced being shy, small and lonely; however sometimes those traits are useful and it is important for me to understand what is going on, so that I can leave the judgement behind.  Adam doesn't judge me because he sometimes has to carry me, I don't judge Sterling because I have to carry him, so why judge myself? Yes it is inconvenient and sometimes I grumble about carrying Sterling, but I understand he is old and having trouble moving around.  Adam grumbles at me sometimes, but he is still there to help.  Why judge myself for acting in way that is appropriate to the situation?  

I take this as a reminder, the body is fine, it is taking care of me.  My mind, my judgements are really what is kicking my butt right now.  Yes my body hurts, it is uncomfortable, that is my opportunity to learn and take care of it.  Being "weak" is an opportunity to explore how I have been taking care of myself, what is going on in the larger situation and understanding if it is appropriate or not.   I need to be better about pay attention to listen if it is appropriate, and act accordingly.  If it is just coming up because it is a neural pathway that is well worn, then change my focus and remind myself I am so many different things.

Question of the day: The traits that you judge yourself for having are they are true reflection of the "inner you;" do they really define who you are?   This is worth exploring and just notice how often you display the trait and how often you just think you are displaying it.  

Monday, August 1, 2016

Pick your battles

Around the time that Adam and I were married, we were eating a meal with my parents, Adam said something.  While my mouth was open to react, my mom gently touched my hand and whispered "pick your battles."   Lot of people gave me very similar advice with different words and different circumstances before our wedding.  But that phrase stuck with me, the idea that I would be spending the rest of my life with this person and I probably didn't want to fight about something insignificant.   To respond to situations, instead of reacting from a place of defense.  

Of course that is all easier said then done.  Adam and I have had some stupid fights about stupid things over the years, however there are also plenty of moments where I remember my mom's advice and drop something, handle it myself or just move on to a new topic.  

I was recently reading an article written by someone learning to life the life she wants with a chronic illness.  She was talking about lessons she learned.  One them was to learn to pick your battles, she talked about how she learned the importance of advocating for yourself, education yourself and going in and asking your doctor about random treatments you found on the Internet.  That you are the only one that knows your internal experience, and the doctors cannot help you if you aren't honest and learning for yourself.  

This weekend I saw that idea in a different light.  I am learning to pick my battles with myself.  I am learning to listen to my body and really trying to learn when it is okay to push it and when it is not okay to push it.   Because the world does not stop turning when I have a flare, and a lot of times I am guessing at decisions.  I am trying to listen to my body and predict how certain things might affect me. In reality I have no idea.   

Adam and I had plans to go out of town to visit with some of my favorite people in the entire world, and Thursday I messaged my friend and told her I didn't think I could do it.  I have been dealing with a stubborn flare for a while now, and on one hand I have been able to do more then I usually can when I flare.  However I pushed it a couple of times and ended up doubled up in my car screaming and crying with spasms.  I didn't want to everyone to drive to get together and me just have to spend the weekend in the room.  

So what do you do when you want to do something, and you feel like it would hurt you to do it?  What do you do when simply traveling to go see someone, leaves you exhausted?  I have no idea.  In this case I asked my friend how big a deal it would be to cancel, hotel reservations and such were involved. I started gathering information so that I could make a better decision.  

RIght now it is not worth battling my body and it's needs when it is hurting.   Right now it is not worth pushing it, because the stakes are even higher then marriage.  I get to live in this body for my life and I want it to be a full and enjoyable life, so I get to listen and learn what I need.  I get to learn to ask for things, to speak up when things are uncomfortable, and to feel the heartbreak of not getting to do what I want.   I was taught if you want something enough you can make it happen.  I still believe that, truly I do; the time scale is not what I thought it was and that is what I get to accept right now.  Things happen in their own time, so listen and act when the time is right.  

"Pick your battles", not only with those in your life but with yourself.   My body is not broken, I am not fighting a disease, I am listening to my body and learning ever so slowly.  I wish you all someone in your life that reminds you things happen, that you are doing your best and that you are worth patience. I forget, and it is like coming home when someone reminds me sincerely and gently.    

Question of the day: Do you need to be reminded today that you are doing your best?  Can you ask someone to remind you or can you be that light for someone else that is struggling today?  Everyone is in a storm at any point in their lives, be kind and be kind to yourself.  It is okay to ask for that comfort, it is okay to listen to that need.