Thursday, December 27, 2018

Permission Slips


One of the things I love about Brene Brown is this idea of permission slips.  It seems like such a silly notion at first to write yourself a permission slip to do something or to be something.  But I have found it helpful.   Part of the reason it is helpful for me is because it helps me really articulate where my struggle is, and sometimes it comes down to I am looking outside of myself for authority or permission.  I look outside myself the most when I am really scared and don’t want to put my skin in the game.  I want to know that someone will stand with me, will believe me and that I won’t be abandoned.  This feeling comes up a lot with doctor visits or even visits with other health professionals. 

I begin with the disclaimer “it sounds crazy, but this is what I feel.”   Or sometimes I minimize the pain and sensations, sometimes I sound very unsure of myself and every statement comes out as more of a question.  Very slowly over these last few months, I have had to learn to be more honest, I have had to make things statements and not questions, I have had to accept that the only way through this is to share what I really feel, how it is really affecting me.  I have had to refuse to back down when I am challenged “you don’t look like you are in that much pain.”   I have had to educate doctors and nurses about the difference between chronic pain and acute pain.   I have had to put the question out there: what would you do with your precious life if you lived with this pain?  Would you act miserable and take it out on everyone?  Or would you do your best to notice the joy and blessings around you? 

All over you can find information about how chronic pain changes someone, how it can affect anatomy and physiology.  The thing is, it never goes away.   Sometimes it is minimized and becomes background noise, but it is never gone.  My body, mind and spirit have this constant drain on energy and resources.  Even with all of that, I want to have the best life possible.  I used to fight when the pain got severe, I would push myself until my nervous system finally figured out a way to shut me down.  It was an exhausting fight, always swimming against the current, fighting to be something I wasn’t.  One day I finally gave myself permission to rest, to not tackle any chores, to not apologize for sleeping through the afternoon, to watch TV all day if I was enjoying it and to play video games. 

It was the first day that I was able to be at peace with being in pain and being sick.  I had to keep coming back to that permission slip.  I had to put down all the stories that things would fall apart if I rested.  I had to continue to put down those stories the next day, when dishes had piled up in the sink and when groceries were scarce. I had to tell that little voice that was saying “see now you are paying for resting, there is more work to do now;” to shut the fuck up.  I had to learn to trust that everything would still be taken care of, even if it didn’t happen at that moment.  I needed to become more creative and learn to do things in a different way, not planning and scheduling every moment of my day. 

I needed to stop listening to all the voices I had internalized that kept telling me there was nothing wrong with me, that I was faking, that it isn’t possible.  I needed to trust my own senses and experiences.  For example, sometimes it feels like my leg is on fire, it is hot, there are sharp stabbing pain on the surface of the skin, jolts of electricity shooting up the legs and thankfully I can look down and see my leg is not on fire, it is not in any danger.  But I still feel it, it is truly mind boggling, but I feel it. It is part of my experience in this one precious life.   If I have learned one thing from years of physical, emotional and spiritual pain it is that life is precious, and I want to live the best one possible for me. 
 


Question of the Day:  What do you need to give yourself permission to do or to be? 

Thursday, December 20, 2018

My heart is okay....


The Dao arises in the study of the heart….

Last week I had a stress test and I made lots of jokes about it.  Internally I was holding the space of knowing it was important to continue to check on my heart and the fear of what if this is the test that finds something.  After monitoring my blood pressure for three weeks, taking a minimum of five measurements a day I was worn out.  I wanted to put down the constant monitoring and measuring, trying to find a pattern and explanation.  I wanted to be able to change my focus just a little bit.

The other fear was not being able to perform, was wondering how my right leg would be able to keep moving long enough to get my heart rate up.  Fears of falling, fears of not being “tough enough” to complete the test.  I kept telling myself that I am not the first sick person to take a treadmill test, that doctors know how to work with people.  I suspended all the horror stories I have heard from people about doctors and nurses yelling at them.  I kept my focus on moving, on breathing and as silly as it sounds keeping my eyes open.  Using my eyes to inform me of what I was doing, where I was and to reinforce that it was only a few minutes of my time. 

I got through it, it certainly wasn’t pretty.  Adam had to speak for me and help answer the doctor’s questions while my body recovered.   We continue to rule things out and for a moment I got a sigh of relief.  For a moment I was able to say to myself “my heart is okay.”   The leads were removed from my chest and it felt like no time passed before my skin was scrubbed and a heart rate monitor was attached to me.  It suddenly felt like a lead weight on my heart. Memories came flooding in from Adam’s hospitalization earlier in the year, my months spent working in the Heart and Vascular Institute, family member’s heart attacks.  I wanted nothing more than for 2018 to be over.

I wanted the clock to strike midnight and wake me up from this year, and tears started to spill from my eyes for days.  I held on to the bright spots of the year.  Two came to mind, meeting up with Adam in Las Vegas, taking a short vacation to relax and see a show.   The other was being able to attend a friend’s wedding, right before I was hospitalized. As I held on to these bright spots, tiny little flickers came to remind me that I am loved.  A friend’s visit in the hospital, going to the movies with family, seeing the mountains and lavender fields, Halloween spent with friends and seeing the lights on the Riverwalk to name a few.  The tears still came, and the sadness felt overwhelming. 

I couldn’t change my focus, I could simply hold the spectrum of light and dark.  I couldn’t imagine how to celebrate Christmas or the end of the year and that was okay.  I took a picture of me and the heart monitor.  I told myself maybe the celebration is simply removing this device at the right time and going for a swim.  I reminded myself how many people are cheering for me, especially on the days I am too tired.  I reminded myself how amazing this technology is to be able to monitor and record my heart, and how much further technology still must go.  I smiled.  

Question of the day: How will you celebrate this year: the rises and the falls?  How will you carry yourself into 2019?





Sunday, December 16, 2018

Doctors.....

A question that is common for me to hear is: “why don’t you just go to a doctor?”  Unfortunately, because of my journey I hear judgment in that statement and it immediately puts me on the defensive.  When someone asks that I hear to many different things.  I hear: you are lazy.  I hear: you are making this up.  I hear: this is simple and what is wrong with you.  Those are just some examples. I have been working on my own reaction to that statement and trying to find ways to help people understand.  Because I know people mean well, and maybe that is not coming from a place of judgement but curiosity.  It is still a really difficult question for me to field.  However, with Adam’s permission I am going to use a story from his experience to help illustrate sometimes it is about finding the right doctor.

Adam is a very physical person, he loves movement and stretching himself to his limits.  He enjoys learning new body mechanics and different ways to condition the body against the wear and tear he puts it through.   It has been inspiring at times to watch him grow and in the beginning, I was immensely jealous of his progress and how quickly and easily he gained strength and awareness.  There are times we joke about him running away to join the circus because he has really gotten into hand balancing. He spends a lot of time putting weight into his hands, he spends a lot of time conditioning and taking care of his wrists. 

Things happen though, and his wrist began to hurt.  His wrist began to hurt so much that it was interfering with normal everyday tasks.  Reluctantly, he made a doctor’s appointment, with a sports medicine doctor.  He went to the appointment; some x-rays were taken, and the doctor spend a few minutes examining his wrist.  Adam felt more apprehensive when the doctor asked him to describe “handstanding.”   But he explained his practice, how he cares for his wrists hoping the doctor just needed information specific to what Adam was doing.   In the end the doctor told him to stop handstanding, that he had permanently changed the bones of his wrists. 

I watched Adam sink into a little bit of a funk, understanding what it is like to be told to stop doing something.  I subtly encouraged him to find a new doctor, to seek a different opinion.  I treaded very lightly, watching to see when he would be more receptive.  Eventually I sent him the name of facility that I was watching because they use physical therapy to handle acute and chronic pain.  They specialize in myofascial release, they seemed to have an amazing understanding of working with muscle imbalances and they also worked with professional athletes.    Adam called to make an appointment, still in his funk. 

At that appointment the consultation went in a different direction.  The doctor had worked with professional hand balancers, he understood the mechanics of the stress that puts on the wrist.   He was able to identify the imbalance and weakness that was causing Adam to hurt.   Throughout the appointment the doctor was even able to identify what hand positions Adam had “over-trained” in the beginning to cause some of the weakness.  Adam was given exercises to do, and physical therapy.   In less than a month Adam is back to balancing on his hands again, working to strengthen the right muscles to put his bones in a better position.   He is working slowly and carefully but is back to doing what he loves. 

Therefore, I keep looking for the right doctor, for someone that can put things together for me.  This is why I started to work with a patient advocate to find me better doctors and to organize my medical history in a useful way.  Because I too want to get back to doing what I love. 



Question of the day:  What kind of doctor do you look for?  


Monday, December 10, 2018

what if there is no answer?


I had a huge breakthrough this weekend.  One of those breakthroughs where you spend a lot of time crying and then you pick yourself up and step into the unknown.  I hate the unknown, I feel anxious, jittery, itchy and I want to go for a run.   I want to shut myself up in a cocoon and ask someone to wake me up when it is over.  

I can’t shut myself in a cocoon, and no that was not the breakthrough.   The breakthrough is that this illness is not my fault.   I know that might sound like a no brainer and completely obvious.  However, to me it has not been obvious, every where I go something triggers me to believe this is my fault, that I have complete control over this.  Something tells me I am not doing enough and that if I change …... I will get better. 

I have this tremendous gift, I read people’s intentions, I look beneath the surface of what they are saying, and I approach everyone with grace.  To me this feels like bragging, but it is a very important part of this breakthrough.  The beautiful side of this gift is that I can sit with people in extremely difficult and stressful situations.  I can look past someone’s behavior in the moment and reflect something beneath the surface.  The other side of this gift is when people want to help, I read that intention and accept what they offer.  However, what they are offering may not be helpful to me and I have a difficult time putting things down, I take it apart just to make sure it isn’t for me.  I hold on to garbage way too much. 

I know this about myself and so when I am not in distress, I need to be very mindful to put things down.  I have ways of ritualizing that and taking care of myself.  That process has not been working and I thought it was because all the statements below were true.  Distress makes things very cloudy.  Right now, I am very much in distress and processing hopefully temporary losses but losses still the same.  I have been going through a huge spiritual crisis (honestly, a little tired of those), a physical crisis and an emotional one: all three worlds.  This weekend it was clear that part of that crisis is me holding on to bullshit. 

I must let beliefs go, meaning go and unfortunately, I don’t have something to replace them with yet.  I can’t just embrace something that is not true to me because it sounds good.  I was clinging so tight to the bullshit because that emptiness and vacancy scares me. Usually it is best to build a new house first before tearing down an old one, I haven’t been able to do that.  I am tearing down a house to its foundation and trusting they way to rebuild will be revealed through this process. 

How do I do that?  How do I tear down these beliefs without replacing them?  I trust the foundation I built, I trust those people who are closest to me and I trust the way will be revealed.  By finally accepting that some people hurt me, that people say stupid things out of ignorance and accepting I am going to die one day.  Intuitively every human being knows death is coming and yet so much time and effort is wasted hiding that truth.   This manifested in me with denial of my illness and accepting other people’s denial and discomfort.  Every time someone suggested something that would fix me, I tried it and then beat myself up because it didn’t work.   I was trying to bargain my way out of this illness and shame spiral, because I would do anything to stop it.  I am not going to bargain my heart anymore, I will not deny myself joy and comfort because our society believes suffering extends your life. 



This makes me feel extremely vulnerable to share, but I believe it will do me good and I hope to speak to someone out there.  Because I know I am not alone in hearing these statements, I am not alone in feeling ashamed of who I am, I am not alone in feeling misunderstood and unseen.   Here are some of the statements and meanings I have been carrying that do not apply to me.   There are more, but that work, and sharing is reserved for people in my inner circle.  The people that have been telling me this all along and believed in me much more that I could.  

I am not sick because of something I did or didn’t do.
I am not faking it.
I am not too sensitive or over reactive.
This is not a result of not doing my physical, emotional or spiritual work.
This is not a result of talking about illness or death.
This is not remaining unresolved because I am enjoying the benefits of being sick.
This is not about seeking attention or sympathy.
I am not weak or stupid.
I am not lazy
This is not the result of traveling or exploring new places
This is not my fault
This is not a punishment for something
This is not going to make me into a better person.   (I do that with my choices, regardless of the stimulus not because of it.)

Question of the day:  What belief can you put down today to make it a little easier to breathe?









Thursday, December 6, 2018

The heart


I sat down to give myself a treatment, as I do before each treatment, I took the time to focus on what was going on and what my body, mind and soul needed in these moments.  I did my best to set down the narrative of fear, confusion and frustration that I feel like things are getting worse.  I asked myself what it really looked like and meant to me to feel loved and safe in these vulnerable, open moments.  Then I did my best.

As I laid down to recover and reflect, I set aside my desire to go back to “normal.”  I asked myself a really difficult question, how do I still live my best life if I never get “better?”   For the first time in months it seemed like a possibility that I could rectify my heart.  That I could find a way to live a meaningful, giving and beautiful life just the way I was.   I could see the first step, but more importantly I also saw the two steps ahead that I kept jumping to to force my heart to open. 

The heart cannot be forced to open, and sometimes the tools I use feel like forcing something to me.  I wanted to get through this challenge as quickly as possible, I spend all my energy sorting through different tools and trying things.  I have been using all my intellect to try to solve a puzzle without enough pieces and sometimes even trying to solve the wrong puzzle.  This does not make me stupid, weak or lazy.  

I have still been caught in the trap when …...  happens I will be happy.   When …...  happens I will be worthy of being loved and cherished again.   No wonder my heart was hurting so much and why I felt like I couldn’t cope anymore.  In a weird way I was making the fact that I was a human being cause to be unloveable.  Human beings get sick, they get sick in terrible heartbreaking ways, they get sick when they haven’t done anything wrong.   I still can’t comprehend it, I have seen it so much of my life and it is still heartbreaking, it is scary and isolating. 

I have been sitting with all these thoughts (thank you Jenn for helping put some of them to more articulate words) when Adam and I went to a holiday concert.  Honestly, Christmas is not my favorite time of the year when things are not going smoothly.  But I love lights and music, the music might make me smile or cry but there is something very comforting about hearing music in a church.  I went with no expectations, well maybe one that Adam would be by my side. 



I had just reached my limit in terms of energy and we were just about to leave when the minister got up to speak.  We immediately sat back down, because it felt to rude to not listen to his message.  He started to talk about how polarizing the holiday season is, when you are happy it is a magical time of the year but when you are hurting it feels like salt in an open wound.   He urged people to be compassionate to where people are, and to listen.   We stayed for the next song, and my heart opened just a little bit.   My heart reminded me that no matter how rotten I feel, no matter how much I am afraid I am losing my sanity and mind it keeps beating.  My heart keeps beating with love and compassion for those around me as it has always done, but right now that heart is playing just for me.  It is cheering for me to put one foot in front of the other to come back home.  To come back to that place where spirit is heard, and everything is accepted, loved and cherished.  “The Dao arises in the study of the heart.”

Question of the day:  What or who inspires you to accept yourself?

Monday, November 19, 2018

courage

I grew up thinking that other people must not feel fear like I did.  I grew up thinking that fear was so paralyzing for me, other people must not feel it.  I grew up thinking that fear was an enemy, that it needed to be conquered.  I watched, for ways to conquer fear, anxiety and feeling weak.  

Courage has nothing to do with recklessness or being numb.  It is about doing something anyway, it is about making a choice.  Courage has nothing to do with the cards that we have been dealt, it is about playing the hand that is given.  Still, I have a hard time stepping free of those shackles created from ignorance.

It feels like a lot of the people around me are dealing with some epic challenges.  Partly for them and partly for me I share this.  

I feel disoriented, sitting on the couch drinking my tea.  It is difficult to hold my head up, the blood pressure cuff is in reach and I put my attention on the familiar sounds and sensations.   The reading is way too high, it must be a mistake.  I wait a few minutes, sitting practicing biofeedback and it is still high.   The apartment is silent, Adam is asleep.  Panic starts to set in, do I go to the doctor?

Twenty minutes have passed, the disorientation continues and I try to call Adam. Carefully I stand up to go wake him up.  I need another opinion, I need someone to help with perspective.  I feel my vision going, but I know the way to bedroom.  I wake Adam up.  He is groggy and unable to fully grasp what is going on.  We sit, taking readings every fifteen minutes.  It starts to go down, slowly but still hypertensive.  We explore options, urgent care, emergency room, telephone a doctor... my panic starts to build until a decision needs to be made.

As I go to change clothes, Adam is silent, inexpressive.  I reach for his hand but it feels just as silent and inexpressive.  In that moment all the boundaries come crashing down.  I see all the doctors that have not been helpful, I hear words and phrases: sensitive, weak, panicking, wanting attention...  Every nightmare comes to visit and I curl up in bed to gather myself back.


This is moment where I feel so much rage.  Rage that I feel this way, that I can’t control it and that I still don’t understand what is happening. I curl up tighter, not even being able to find words to express what it is like.  

I call and make an appointment, my voice cracks and I forget my birthday a couple of times.  But the receptionist is kind and asks for details to get me an appointment sooner.  I keep reaching for a hand to steady me.  

Somehow I can put all those emotions and stories down for just long enough to make the call.  It seems they want to be picked back up and I look at the basket of misunderstandings, miscommunication, ignorance, lack of empathy and decide today I am too tired to carry them.  I wait for my appointment with this basket in my shadow instead of on my back. I am not free of the pain, but I still move forward finally accepting a hand to hold.

Question of the day:  What have you accomplished in your life regardless of what you felt?  When have you done the best thing even when it felt like the world was standing against you?

Wednesday, November 14, 2018

Garden


I have been blown away from the out pouring of support from friends and family about my last post.   I am so grateful to have surrounded myself with amazingly kind and open people.  I wanted to say that, that is not my everyday experience.  However, days like that are becoming more and more frequent, which is scary for me.  It is stressful for Adam as he does his best to juggle my health and his responsibilities and passions.  

I received a note and a gift from a friend, that took my breath away; it brought both Adam and I to tears.  Not only will the gift help bring me some comfort and peace of mind, but it helped Adam to drop some of his stress for a moment.  It is little things that mean so much, that create beautiful moments of gratitude and perspective.   Thank you! 

Why does it matter?  Because it adds to this little garden I am tending, it helps plants seeds in my mind, my spirit and body.  These seeds lie dormant and wait, wait for the soil to be watered and then they begin to bloom.  All the fear and stress that I am feeling and carrying daily provides water for the garden.  I am getting to learn what I have planted consciously and unconsciously.   Seeds planted deep in my childhood are emerging, and some of these plants are weeds.  It is ideas and beliefs that don’t apply or make sense in this context. 

But more importantly I also see flowers and trees that I have planted these last few years.  I see kind words that I accepted starting to bloom.  I hear the voices in my friends and family in these plants that are flourishing.  I see the work of the last six years beginning to show.   Right now, in this moment I can see the growth from who I was.

Six years ago, I believed that life was about what someone did, now I know it is about how something is done.  I have faced this crisis with a kinder and gentler heart than I had years ago, I have been kinder to myself.  I am still learning, I am still pulling weeds every single day, but I can see the kindness blooming.  I can see the difference acceptance makes in my life.   

I just want you to know, that each time you send me a kind word or note, each time you send me loving thoughts or prayers, it adds to the seeds in my garden. It allows kindness to bloom, it reminds me to return to the state of acceptance and living the best life.   These words strength me when I feel weak in spirit and allow me to sit in a beautiful garden when I need an escape. 

Thank you!

Question of the day: How can we continue to plant seeds of kindness in gentleness in not only our own hearts but in the hearts of others?

Thursday, November 8, 2018

Raw


It is early morning, the room is dark and warm and as I wake up, before I can even open my eyes the pain hits like a bonfire.  I feel heat, tingling, stabbing and shooting pains mostly through the right side of the body but today that horrible tingling is on the left side too.  I stay completely still, each time my breath hits my skin the pain gets worse.  Eventually I become aware of Adam’s alarm going off and his movements.  I struggle to figure out how to communicate the level of pain.  Words are difficult to find and I keep telling myself not to cry because the tears might add to the pain. 

Adam gets ready for the day, placing herbs on the bedside table.  Thankfully little communication is needed at this time.  I can feel his heart breaking as he leaves for the day.  I know he feels helpless and it is a horrible feeling.  I continue to lay there slowly moving to get the rest of my body under the blanket, the air currents feel like more fire.  I stay still until I can move, sit up and take the herbs. 

I stay still and go to my mantra, even thinking about my breath is too much.  I just keep saying “neuroplasticity” in my mind as often as I can.  Clinging to this belief that the nervous system changes, grows and evolves and so this can get better.  Maybe it should be a little more spiritual, and prayer alludes me; “neuroplasticity” is all I can manage.  Eventually the tears and groans come and I eventually sit up to drink my herbs.  The cup has gone cold and that is my only reference for how much time has passed, my eyes are still closed.

“What can I do?”  I don’t know.  At this point I have no doctor to help, I have no trust in getting help at an urgent care or ER.  I keep my focus on the little light of hope, this little door that has opened and just needs more time.  I am unable to even remember the word patience and I search for it.  Giving up I just keep my focus on that little light of hope.  These little slivers that open up and remind me that I am still being supported and that I am not alone.  I focus on that warmth that I envision like a small candle, bring it inside and hold it in my vision for as long as possible. 

This is my experience waking up with a chronic illness and chronic pain.  This is my experience after seeing lots of doctors, lots of specialties and going through many tests.   I know I am not alone, wondering what happened to healthcare.  I am not alone in having to wait months to see particular doctors.   I’m not alone in wondering how to care for myself. 

I cling, I cling to my little light of hope.  I cling to my silly mantras.  I cling to the laughter, smile and joy of my loved ones.  It is hard sometimes to see people smile and get excited about things, but it reminds me that there is still joy outside the darkness that feels so crushing today.  It is small comforts that truly make the difference and so my gratitude goes to them as I search for both the word and meaning of patience. 

Monday, October 29, 2018

Hats


I have been dealing with one of the worst flares I have had this past week.  Not only did the pain flare but the brain fog was terrible.  I was stuck in this loop of being disoriented, reliving traumatic memories and feeling terrified that life would remain like this.  The other thing that happens during these flares is I end up doing a lot of reflecting on what I believe, what I was taught and any tools that might serve me. 

I have been watching a show, and a character was attacked; it has been interesting to watch how the show how handles her emotions and difficulty with adjusting back to her work and life.  She has just been sent somewhere to rest and restore her spirits, somewhere that there is support and guidance, somewhere with light and outdoor fields to walk through.  When she was getting ready to leave she asked to put on a dress from earlier in her life, before she was so unsettled with life, love and God.  I watched this episode and I wondered what I could wear that would be a talisman and a reminder that this too shall pass, what would remind me of different days where I felt safe in my body. 

I went to my closet and stared for a long time.  I was more struck with the feeling of wanting to be rid of some of my clothes and the commitments they represented.  Then my eyes fell on my Priest’s robes and jackets and I felt so unworthy.  As much as I want to run from that feeling I stayed with it, I really wanted to understand why I felt that way in this moment.  Eventually, I went to lay down and rest, still not understanding what message was being carried and what needed to change. 

Then I had a dream, there were twelve hats on a shelf and more than 12 people in the room.  All around me I could hear the chatter of why each person wanted the hat, and what they would do with it.  I pulled more and more into the corner of the room as far away from the shelf as possible.  Slowly I watched people take a hat, place it on their head and leave the space.  Until there was one hat and the chatter had stopped, the room felt more crowded.  I woke up with that feeling of being in a crowded space. 

Here is what I learned about my beliefs, that I see love, help and compassion as limited resources.  That I believe at any time Adam is going to look at me and have run out of love for me.  That I believe when I need help and comforting that it means I have nothing to offer to others or even myself.  Admitting where I am is a start and then I take steps towards the place I want to live from.  For now, it means I need to trust that people understand when I cancel, that people are okay with me stuttering and being confused sometimes, that people will understand that I need to rest and that a time and place will come for me to put on my robes again. 



Question of the day:  What helps you to remember how loved and cherished you are when life feels like a rollercoaster? 

Monday, October 22, 2018

Anger


I named this blog changing the focus, and it has served me well.  It has opened me up to seeing the world differently, and it has taken a lot of work.  However, changing the focus is not the same as ignoring what is happening, it is not the same as color coating a difficult situation.  Changing the focus can be as simple as asking myself what I can do when I feel frustrated by all the things I am not able to.  But it does nothing to change that frustration, I still feel it. 

I feel a lot of emotions and many of them I am quite comfortable with, however there is one that I continuously run away from.  Even to the point of lying to myself that I don’t feel it or that I will simply focus on the multitude of other emotions I feel in moment.  I run away from feeling angry.  I would rather feel any other emotion except anger from myself or from others. 

I formed my ideas about anger early on, anger was equal to violence and pain.  It was certainly not something that little girls felt.   The emotion itself became villainized in my psyche.  It has taken me a lifetime to get to this point of being ready to look at anger, to look at how I misidentify it, how I run from it and how I might use it.  I expect this will be another lifetime of work. 

Here is where I start, I called a doctor this morning and was told to return to my referring doctor that I needed a different specialty.  I felt furious and while I was shaking I said “okay,” hung up the phone and just tried to feel it.  Immediately I could feel other emotions come up to distract me, to protect me from this feeling I fear, helplessness, unworthy, sadness, exhaustion and frustration to name a few.   I tried to get back to that feeling of anger, to try to learn what that felt like in my body, where I felt it; other than the shaking.  Then the mental chatter started; “What good is it to feel anger?  What can it be used for?”  I had no desire to yell at the office assistant at either doctor (since I needed to call my referring doctor).   I didn’t even know what to do with the feeling.

My body settled into that helpless feeling and found a use for that anger was revealed.  It was nothing more than to say to myself I am worth being taken care of and I will continue to make calls, research and do my best to find that care.  The anger provided some energy to break me out of that downward spiral.   To make that phone call to my doctor, let some people know what was going on and to eat lunch.   The anger faded away, or maybe I just repackaged it; I am new to this. 

Reflecting on this short period of time, I can see all the different ways I run from anger, just because I don’t know how to use it.  Even in the last six months whenever someone says, “Aren’t you angry?”  I tend to shrug and say it takes too much energy to be angry. With my closer friends I will say “who would I be angry with?  Is there someone to blame?”  Because my pattern is to blame myself and so anger is not helpful.   Today I will say I feel it, it is deeply buried and brings tears to my eyes; but healing must start exactly where I am.   For me it will continue with a book to learn better language and to understand how anger feels in my body.    


Question of the day:  In what way has your anger served you in advocating for yourself or others?

Tuesday, October 2, 2018

Results?

I have spent hours hammering nails into this latest piece of...it is the second attempt to make such a piece and it is not done yet.  Still I have hammered over 200 nails in its creation even though some of those went into a piece that was an absolute disaster.  It has been a big learning opportunity, and I hope I have learned some lessons that will serve me well into the future.



That is the way of it, sometimes we get simple things on the first try and sometimes we don't.  I try to remind myself of this as I prepare for another doctor's appointment today, to receive results from my EEG.  I try to remind myself that there is always something to be learned from information and it hasn't all been a waste of time.

I will tell you, readers that I have a pretty pessimistic attitude about Western medicine right now.  I feel frustrated and let down.  Heading into this appointment I have thoughts "they won't find anything just like all the other tests."  I have a little voice that says "what if they do find something?"  This is the voice that troubles me a bit more.  Because I have lost hope that this is something easy to fix, with each test things look more and more complicated.  It is a terrifying space to sit in, the unknown. 

I lean on my friends, perhaps very heavily at times like this.  Sometimes Adam or another friend has to convince me I am worth the time and effort, that there is an answer and hope.  Sometimes I wonder if they believe that, because I don't always see it.  I spend too much time trying to understand my worth and how to measure it.  Because I feel sad that I am not working, that I turn down invitations to events, that my schedule is based more on doctor's appointments than anything (4 this week alone.) and that I feel like I can't love those around me enough. 

I have been truly blessed with the friends and family I have in life.  They continue to surprise me with their support and encouragement.  I am so grateful for them, and I feel regret that I am not able to do more to express that love I have for them.  They have been able to love and accept me in some of my worst moments.  It hasn't mattered to them if I am too weak to get off the bathroom floor, if I stutter and confuse my words, if I am in so much pain I can't handle noise or if I am my smiling calm self. 

That is what I will carry with me into this appointment and into the unknown, those kind words, the hugs and the love that I have received.   That is what gets me through the terror and to the other side.  Thank you all!

Question of the day:  Where will you sit with the unknown today?  I know I am not alone in facing the unknown, it is a reality of each and every day here.




Tuesday, September 25, 2018

Relationships with Symbols

I have been taking a break from writing for the blog.  I have been struggling a lot with what kind of message to bring out with my writing.  Sometimes I feel like I whine too much about what is going on, sometimes I feel like I hide a lot of the frustrations and sometimes it makes me feel more alone to share.  I also feel afraid of what someone might think of me, labels like lazy, stupid, weak fill in the vacuous state.  But recently there have been a series of events that I feel like I need to share.  Because I know some one out there feels like they are the only one hurting, I know there is someone out there that needs that voice "I understand."

A few weeks ago I went to New Mexico to go visit my parents, it was a short and brief trip.  The day I was to leave I was terrified.  I was worried about not being able to walk through the airport, I was worried about being in pain on the plane, I was worried about food, and I didn't know when more diagnostic tests would be scheduled.  But I have missed my parents and so I did my best to pack with extreme brain fog and a kind friend drove me to the airport.

I had just gotten through security, which is nerve racking for me because I worry about traveling with so many medications.  I was sitting down to put on my shoes and admire a little dog, when some sort of alarm went off. Immediately I could feel everything tighten down and my breath become shallow.  I started to watch, I sat there and waited for an announcement, anything.  

This feels pretty selfish to admit, but my energy was focused on doing my best to figure out exits that I wouldn't get trampled moving to, in case there was an evacuation.  I kept my eyes on the security.  Three minutes later (I timed it) there was an announcement saying that an alarm had been triggered and to wait for further instructions.  Still security was moving people through the line, business as usual.  I kept waiting, I didn't want to move farther away from an exit.  Eventually they announced that the alarm was being reset.  

I slowly made my way to the gate.  My legs felt so heavy and I feel like I move so slowly.  I had just sat down and was resting.  I felt like this had been a mistake, I was not strong enough to make this trip.  Then the announcement came that our gate had been changed.  To the other side of the airport.  I almost called my parents to tell them I couldn't do it.  I walked with tears in my eyes to the other gate.

That is when I saw this:

Immediately I could feel a little of the tension release.  The Zia is a sacred symbol to me, it reminds me of home.  I have seen it in some difficult times in my life (wanting to give up during a half-marathon, halfway across the world in China when I was extremely ill, before a surgery, driving to visit Adam in the hospital).  It shows up and I remember to breathe, relax and it is going to be okay.  

I knew that this was where I was supposed to be and that I could make this trip.  There is no magic spell, I was still in pain and anxious but I knew that something in the universe was telling me "Lenore, we got you.  We hear you."   I have spent so much time with this symbol and I am so excited and grateful when I see it, moments like these remind me there is so much more.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy." -Hamlet

Question of the day:  What ways have you observed in your life that the universe communicates with you?

Wednesday, September 5, 2018

tight little ball

Warning:  This post talks about pain, body functions and vomiting.

Wednesday I started to feel exhausted, I was nodding off during a visit with a friend and later in the day I was worried I would fall asleep driving to a acupuncture appointment at 6.  I spent most of the day resting, reading and sitting on the couch. 

Thursday I opened my eyes and thought "maybe if I just move around..."  I could feel paralysis and pain settling into the right foot, but sometimes getting up and moving helps.  I got out of bed and walked a few steps before I fell.  Then I picked myself up, shrugged it off and kept going.  I was bringing Adam some supplements to take and I almost fell again, I caught myself.  He asked if I was okay and I said "I'm going back to bed."  The day progressed from there, I struggled through browning some meat and getting veggies thrown in the crock pot before crawling back into bed.  Each time I needed to get up, I was shocked by the amount of pain I felt shoot through my leg.  I was limited to water and bathroom for the rest of the day.  (I was in so much pain each time I needed to pee that I actually considered for a split second just inserting a catheter for the rest of the day.)

By the time Adam got home, I was exhausted and unable to handle walking.  He served me some dinner and went to workout.  A friend came over to help do some bodywork on me.  I have never been so grateful before to have someone work on me.  He was able to get some movement without increasing the pain.  I was able to settle into bed to sleep. 

Luckily Adam had the day off on Friday because he was able to help take care of me.  We were able to go see some friends for a few hours before I just needed to be in bed.  I was frustrated.  We continued to eat the stew I had made for the next few days and almost every meal. 

Sunday morning I wasn't feeling much better and emotionally I was a wreck.  I made some breakfast of bacon and greens, then I got sick.  I just started vomiting.   I couldn't take it anymore.  I didn't know what to do.  I don't have a doctor that I can call, because they don't know what is wrong.  Going to the emergency room hasn't been terribly effective.  I am working my butt off and I don't know what is helping and what could be making it worse. 

I couldn't eat that stew for one more meal and I just wanted toast.  This is the point where I decided that AIP was not working for me right now.  Adam got lunch for us later at a Persian Restaurant (they have freshly made bread) and we tried to regroup.  I am still trying to regroup. 

I am a tight little ball of pain right now.  I'm scared and exhausted.  This is so hard because I want to say what is working, what is helping.  I want this grief to go away, I want to minimize it.  But here it is and I don't know what to do. 

It has been a week and the pain has gone down, I was able to make it to the pool for a little while.  I was able to get some laundry done but I am mostly in bed, curled up.  This will pass, and maybe my doctor's appointment will offer some new ideas; but maybe it won't.  Maybe I will continue feeling blind, making my best guess and leaning on my friends for support along the way.  Because I am eternally grateful for their support, they keep me going on my darkest days and my brightest. 

Question of the day:  When life becomes too much what have you done to set the reset button?  Physical activity was so helpful for me to find that reset button and give me a moment of peace, now I have small little art projects to keep my hands busy and my mind focused. 

Monday, September 3, 2018

Three things

I have been searching for ways to explain one of the ways that my brain fog is affecting me.  Then one day walking out of a chocolatier, before AIP I had the perfect example.

I walked into this place and there was a huge selection of handmade bonbons.  I felt very anxious about all of the choices, but I quickly zeroed in on three choices.

After the lady checked me out and was packing up the chocolates, she offered to put in another one for free.  I looked at her and said "no, thanks I can only remember three things."  I listed off the three flavors again.  She looked at me like I was a little insane; but it was true.

My memory has been going downhill, and I lose track of things very easily so I started to set a the goal to remember three things each time I got in the car to go somewhere.  Most days I failed, and so I stayed with three things.  I continue to test myself each time I get in the car and when I get out at destinations.  I still have trouble remembering three things.

Based on this example, one I am a little stuck on "three things,"  but I am also having a very difficult time grasping context and being able to widen my focus.  Free chocolate didn't occur to me, that I could have gotten two of the same flavor didn't occur to me, that I could've gone for four and seen what happened...lots of other responses.

I still write these things for me and sometime for Adam to help remind me what has changed, and what can continue to change and improve.

Question of the day:  Favorite chocolate dessert:

Wednesday, August 29, 2018

Weaving and unweaving

This is a photo from a number of years ago, I sat for a long time watching these monks work.  This year I wanted to go see this event again, but by the time Adam and I had gotten out of the house and handled a few errands I was too exhausted.  Imagine being to exhausted to sit or stand and watch a beautiful work being woven together.

However I think about this practice a lot, the idea of creating something just to watch it dissolve in the wind.  It is like watching clouds form shapes and then dissolve, it is one thing I have been told to do in meditation, watch the thoughts and stories dissolve. 

Right now I am working on dissolving the story that needing and asking for help makes me weak, or needy.  I am working on accepting that I am not the person I was six months ago, and keep asking myself what am i capable of handling right now. 

I took a big step in this journey yesterday and talked to a patient advocate.  I am trying to understand what tools are out there to help me navigate my life better.  I reached a point where I am having trouble managing my own healthcare.  Keeping track of doctors, working to communicate between doctors because for some reason they don't seem to talk to each other very often.  I am extremely lucky, I have this amazing support system, people offer to come with me to doctor's appointments since I have trouble following what the doctor says.  I forget, I get confused and I feel so anxious I tend to freeze and just nod my head. 

The woman I was speaking with suggest recording doctor's visits even if I have someone there.  She is always surprised the amount of information a doctor can say in five minutes.  I will start to do that.  I will work on being more transparent about my symptoms and my declining cognitive abilities.  I will keep working on telling people what is going on.

My prayer is that my journey will help others in some way. 

Question for the day:  What do you use to help you communicate with your healthcare team more effectively?  Online portals?  Recording doctor's visits?  Taking notes?  What enables you to be heard and seen?

Monday, August 27, 2018

Week 3 (Pause, breathe and reset)

Week 3 began with me getting in a car and driving up to Dallas.  I got to my destination and could barely walk, my ankle was just frozen in position, and the rest of me hurt.  Even walking around and massaging the legs didn't bring that mobility back right away.  I definitely noticed this week that potatoes made me feel worse.  My nightly sneezing came back, so maybe that is due to dairy.  My skin also got much worse, lots of cystic acne on my abdomen, and whiteheads on my face.  What I eat clearly makes a difference in my skin.   I was still struggling to eat meat, fish and seafood were okay. 

To complicate this experiment I also stopped one of the four antihistamines I take, and the brain fog got much worse.  Also my emotional stability was worse this week, however there were a number of things that added to stress.  I also had a very difficult time sleeping this week. 

It was very nice to spend three days mostly by myself to rest and recharge.  I didn't need to think about fixing dinner, I took a break from making phone calls to doctor's offices.  I started to sit down and make a list of what I can do right now and what I can't.  Some of the things are really embarrassing, I can't track more than one conversation.  I need my doctors to both write and tell me their theories, I have to write to do lists and then make more because I lose the to do list.  I need my GPS even locally because I tend to get lost or forget what appointment I am going to.   I am thankful there are tools to help me cope right now.

I also need to constantly remind myself it doesn't matter what I could do six months ago and where I am right now does not predict where I will be in six months.  I need to continue to take steps, I need to practice reading, typing etc when I have the energy.  I need to rest when I don't have the energy. 

I had a doctor's appointment with another doctor, with a different approach.  I gave more vials of blood and I am waiting for results.  He also agreed there was something going on, but a lot of the test results are right on the edge.  It was wonderful to have a doctor that was a bit more willing to explore different ideas.

Now that I am back at home, it is time to go back to the diet.  Hopefully I have learned a little more to make it a little easier and sustainable.  Plus I have a few meals in the freezer to help get me through upcoming rough days. 

Question of the day: What helps you accept a time to rest and a time to push?

Sorry about the discontinuity between swimsuits, my photographer was busy.  I just took some quick shots after being in the pool before getting in the shower. 




Wednesday, August 22, 2018

Week 2

There is a saying "seven times down, eight times up."  I lost track of how many times I have had to pick myself up, but I do it.  I learn and hopefully make changes that keep me growing and work to thriving again.  Armed with a few new recipes I started the week strong, I was starting to get sick of all the meat and tried more seafood.  My brain fog started to get worse and as my doctor's appointment approached I was having to force myself to eat.  I didn't have an appetite, and nothing sounded really good. 

Then I had my doctor's appointment.  Fuck, the test results didn't show anything abnormal (YEAH!) but fuck.  I had put a lot of eggs into that basket, I had put my hope that answers were coming and we were finally circling around something specific that would help.  I was in shock, and I couldn't bring myself to eat at home. 

It is a strange thing to be upset about test results being normal, but it is where I am.  Adam took me out to dinner and I decided this diet was not going to work the next week.  I had made a decision to go to Dallas for three days and I couldn't figure out a meal plan.  Like I said the brain fog was getting worse and then emotions complicated everything further. 

So I "cheated."  I woke up the next day with horrible stomach cramps.  So clearly I ate something that made my body extremely unhappy.  But I needed to break from all the meat and was extremely discouraged and disheartened.  I will do my best this upcoming week to avoid certain things, but traveling and being away from home for two trips makes it difficult.  Especially when it is a last minute thing.

The diet is helping, and I will return to it.  I will post next week about how not keeping to the diet changes things, like I said this is a journey.  I am being honest about the fact that this is difficult.  For the next week it is on pause, while I pick myself up and head back into that arena.    

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”  ― Theodore Roosevelt  


This is the quote that comes up so often and encourages me.  It reminds me that life's journey is not always pretty, or pleasant; but it is worth it.  

Question of the day:  What is one of your favorite quotes that helps you pick yourself back up when you are disheartened?  I have a huge fascination with quotes, they have served me since I can remember.  It reminds me of how connecting the human experience is, that someone has walked this path before and was able to capture their journey.  

Sunday, August 19, 2018

Storms


Everyday I get up and after I make my celery juice and drink it I go for a walk.  My goal is to get to the bayou, it is just a few blocks away.  Some days I make it and some days I don't.  However the other day I walked to the Bayou and turned around and began to walk through my neighborhood.  My beautiful neighborhood, that welcomed Adam and I with open arms when we moved in.   I stopped in front of the house absolutely awed by their yard, it was beautifully taken care of and loved.  I don't know but something stuck out at me, then I noticed the sign voting it best yard of the month.  Still I kept looking...

Almost a year ago Harvey hit Houston, and people lost so much.  Adam and I left the moment we saw them bringing boats into the neighborhood.  Kind friends offered to host us, and we stayed with them for a few days; then we came back and were placed under voluntary evacuation.  We decided to stay and then the power and water went out again.  As we were packing up the car to go stay with friends again, the power came back on.  Adam and I just cried and held each other, we were exhausted.  Also, side note, I was starting my chaplaincy residency at the same time.   However, Adam and I were okay, all our stuff was okay this was a storm with some minor inconveniences.  A few blocks away....

I am standing there looking at this house and I notice tape on the windows, little pieces.  I notice there are no cars in the driveway and then I take in the dumpster.  After a year people are still working to tear down and rebuild. I start to invent this story about the family that lives there, that none of them are very handy at indoor repair but their passion is gardening.  They have hired and are working with contractors with more experience to tear down and rebuild their home. But it is still their home and they are going to take care of it and tend to it with the skills and tools they have.  It hits me how hard these owners must be working not only to get back into their home but to maintain their yard.  I cannot imagine the heartache and grief, that they are soldiering on through.  

Walking down these streets it takes a keen eye to see which homes are still waiting and which homes are back to being occupied.  As I continued my walk I considered what it must take to heal a body, mind and soul.  I thought how each one of us heals at different rates and yet each one of us can do it.  

Right now, my energy is going into eating well, aqua aerobic and having a clean comfortable home, I am working on the outside, the landscaping.  Because I must stand back and allow my body to continue to heal, I must do my best to provide it what it needs and allow it to do what it can.  Yes, someone else might heal faster, someone else might have more information about what helps and what doesn't; but storms result in different types of damage.  I don't know if I am dealing with the aftermath of a storm or an ongoing on, but I know I will continue to put one foot in front of the other. 

Question of the day: Do you have a goal that you do your best to accomplish each and every day?


Wednesday, August 15, 2018

Week One? of AIP

When I got out of the hospital in May, I remember telling my mom that I was so tired of feeling like this, I didn't care what tests needed to be done I wanted to understand what was going on.  It was time to live up to that this past week when I went in for a spinal tap.  I will have the results some time at my follow-up appointment.  Because of that procedure I spent a lot of time laying down and fumbling about at home.  

This diet is rough, I needed to go to the grocery store multiple times during the week.  I hope that will get easier with planning, but there were times when I couldn't find something and I didn't want to go to two grocery stores in one day.  I have had a couple of emotional breakdowns over failed recipes.  I am very stressed and my resilience is low at the moment.  

This week I had a number of fails.  I continued my love for chocolate, since the doctor recommended caffeine for spinal headaches.  A hot chocolate from Starbucks with coconut milk is not quite the same, but when your husband brings you one as you are recovering it was wonderful!  I also discovered through additional research that aloe vera is not allowed on the AIP protocol, which is something I use daily to help with IC.  I am happy to experiment with leaving it out, but I just opened a new bottle.  I will eliminate it after I finish that bottle.   (This is not something I use when I travel and so I know that there will not be catastrophic consequences if I cut it out for a period of time, plus if my bladder starts to bother me I will quickly add it back.)

I also ended up buying green beans at the supermarket in a moment of panic, something wasn't available on my list and I just went with a habit. I ate one meal with them and then had Adam finish them the rest of the week, I really hate to waste food.  Another fail because of habit happened at sushi.  When the check came, it had these little candies that I love.  Even before I thought my friend and I were enjoying the candy, and in the middle of chewing I said "oops."  She looked at me and laughed, saying "100% compliance, how do you measure it?"  We had been talking about nutritional studies and the difficulty with these elimination diets during our dinner. This is a demonstration of how easy it is to follow a habit.  It teaches me to be more mindful and pay attention.  

However there were successes as well.  I made this beef pumpkin stew that I was very skeptical about, however both Adam and I loved it.  It is a perfect fall stew, especially for anyone that likes pumpkin.   I also walked farther than I have since before my residency started, that is almost a year.

Question of the day:  What tools have you found to help rebuild yourself when you are stressed and overwhelmed?








Reading paragraphs

Everything feels different and I don’t know if that is okay.   What I mean by that is I don’t know if it meets other people’s expectations...