Showing posts from 2018


I have spent hours hammering nails into this latest piece 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 lit…

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 sche…

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 f…

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 thin…

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 m…

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…

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 deci…


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…

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 q…

Comfort food

Before I started the AIP (Autoimmune Paleo) diet I took a little bit of time with some comfort food.  I have done elimination diets before and it kind of sucks.  I have always been surprised by the emotional upheaval involved.   For me this involves feeling anxious and easily irritated, which makes it a difficult change for Adam as well.  
Previously I tried a gluten free and sugar free diet before a trip to China.  I felt pretty bitter and upset during that time, it felt unfair that all of these tasty foods exist.  This diet was just an experiment and not necessarily for health reasons.  I clearly didn't keep it up but in that month I learned a lot about how much I enjoy certain foods but also what foods help keep my emotions grounded and which ones numb me.  Sometimes this has to do with the amount of a food, but it was interesting to observe how food helps numb my emotions.  
Then I did the Interstitial Cystitis diet, this one was a Godsend.  I had figured out that food aggrav…

Starting Place

I have heard that it is helpful to take photos of yourself and watch how things change when making lifestyle changes.  It is helpful to know where the starting place is and for me visual differences are sometimes harder to argue with.  I took these before photos a few days before starting the AIP diet.

I went back and forth on this decision, since I am not doing this diet in an effort to lose weight or improve my physique. I am curious about how I stand and carry my weight, in these photos you can tell that I have more weight in my lift foot.  Because this was a low pain day, it shows me that I still lean to the left when it is not necessary.  I am curious if this diet affects my skin tone and acne breakouts.

But here is the thing, I want to know how this diet affects my health.  I am curious how the fatigue changes, right now I can leave the house for a few hours a day before I need to rest again.  I am curious how the brain fog changes over time (it might get worse at first).  I wan…

Time to get to work

There is this pleasant little stream called denial, eventually it gets too shallow to float and yet I continue to splash and play in the stream.  I tell myself just a little more rest, it is not that bad, it will get better.  Then comes a moment when it is time to wake up to what is before me.

I wish I could say it was in the doctor's office and he asked me to flex my foot and pull back my toes and my foot didn't move.  Everything except my sight was telling me that my foot was flexed and the toes were pulled back, and so I concentrated harder my foot didn't move.  Eventually my foot moved, and I looked at Adam with fear.  I described to him as "you know when you are filming and you think you nailed something, but you go back and watch the tape and your body wasn't doing what you thought it was doing?"  "Or when someone gives you an assist in yoga and you think, oh my knee was bent."  It was mind blowing. 

I wish I could say it was that moment when…

New skills

Pain is a great teacher, it continues to teach me about myself.  It sucks and I am ready for it to leave.  When I was a toddler I started to get migraines, I would scream my head off until I was exhausted and fell asleep.  The first migraine I had was when I was five, I remember screaming so loudly.  I was in a dark room and a soft bed but I kept screaming and screaming.  Then there came this thought, maybe screaming makes it worse? 

I stopped.  I got really quiet and noticed that the pain changed, and I still wanted to scream.  This was the moment that I made the decision it is better to be quiet about pain.  Which makes sense with migraines that are aggravated by noise, lights, etc... This does not make sense with other pain, and yet as I reflect on my life pain needed to hit some exterme threshold before I will communicate with another person about it.  (I used to pass out because of my menstrual cramps, and it still took years for me to say something other than "I have bad c…


I was recently talking to someone and they told me that I over identified with my pain, that my desire to communicate it was just a way of feeding the pain and make it bigger. It is a terrible thing to hear from someone that your illness is your fault, which is how my inner critic took the message.Maybe she is right or maybe I need to find some way to communicate this hurt, to be able to really look at it and let it go.
Recently things took a turning point and I am struggling to hide the physical pain.My walking has become unsteady and unpredictable, it is embarrassing and inconvenient.Right now, I have no idea what the future holds except a trip to see another doctor.
Instead of me sitting down to a cup of tea and describing in detail what the pain feels like, let me tell you what I am grieving, what I have lost.It might be a temporary loss or it might be a permanent loss, the grief is there.
I have lost confidence and trust in my body. Yesterday I needed to stand up in front of som…


Today is a really rough day, that word rough can have so many different usages.Let me tell you what that means today, let me tell you about the demon that rears its ugly head sometimes.Physically I have little energy, the pain has been high, there has been a lot of loss of function and I am tired. But all of that is minor compared to the lies my mind will tell.
Today I woke up to listening to my body scream and shout in protest, the past few days it has felt like my emotional body is just locked in that paralyzed scream.I take breaths to feel that, it is all I can do at this point.I make my juice, use my inversion table and do some quick physical therapy exercises. The mind starts jabbering, it tells me this is not going to get better.It tells me that if it was going to get better I would’ve figured it out.It twists what my loving friends and family have told me into painful daggers to back up the point that I am simply a burden.That I need to push harder.But there is nothing left.


I open my eyes and my body is heavy, I can feel the burning and tingling of my nerves and I just want to go back to bed.I toss and turn for a little while trying to find a comfortable position until my alarm goes off, but eventually I just get out of bed.
I am reminded of a backpacking, carrying the weight of the backpack, pushing the body to get to the next campsite.Those moments when the legs are so tired it takes intense concentration to move.When the only thought becomes just take the next step, that is how I feel this morning.Except there is no backpack on my back and I haven’t been hiking ten miles.I slowly cut up my celery to make my juice, send Adam a good morning text and measure out herbs for my tea.
I share with Adam that I was upset about something, that I still felt misunderstood.That is a so difficult to explain to people that do not see me on a daily basis to understand how it feels to be in my skin.How much intense mental work it can take to keep moving, to put on fo…


I have been asked many times, “what is your secret?”People want to know how to handle pain, but the truth is very few people have ever seen how I deal with pain.When it crosses a threshold I retreat, as most humans do.I have seen that retreat as weakness.You see I walk around assuming that everyone else is in as much pain as I am, and they handle it better.(This might sound crazy to you, but it is more about how I experience the world.I experience the world through a filter of pain and I am just doing my best.)
Last night Adam and I were at dinner, and he said something interesting.He said there is no way to quantify how much pain someone is in.He said maybe I need to consider how my pain affects my life.He said “I hurt a lot from my training, but I have never been in so much pain I couldn’t walk, that I passed out, I have never even had to consider if I could go to work because of the pain I was in.” I really wanted to take this as proof that I was weak, he said he was in pain and h…


This post probably won’t make sense if you have not seen the Guardians of the Galaxy movies, so I you want context, go watch it. The post will still be here.
I happen to love Groot.It is a common tool that Adam uses to show me clips of Groot; they make me smile.Today after an awkward morning I was thinking about how Baby Groot fits in with the Guardians of the Galaxy Team.
I went to meet with my old supervisor this morning to go over my final evaluation, I put on my chaplain clothes, and nothing felt like it fit.Of course, it was raining so I just needed to get out the door, ugly shoes and all.I couldn’t listen to music or a book because driving takes far too much concentration for me now.I was left alone with my anxiety and stories about how the meeting would go.Most of my anxiety is rooted in not being able to give a timeline for my recovery or even a clear diagnosis of what is going on.The amount of blood and other samples that I have given in the past two months, I would’ve hope …


I never know, I never know what the day will hold when I start to open my eyes.I am one of those people that opens my eyes before I start to stretch into my body, I like to look around and plan. The night before I had gone over the plan for the day, make breakfast, clean, appointment, make lunch, prep dinner, write and rest.As I start to feel my body, my legs are tingling, not painful but weak.Right there, I start to get discouraged.I keep going and wake up, start breakfast.I can feel a change in my gait, I can compensate for it and adjust it, but it might get worse.
It might get better, and there are things that certainly help but I am discouraged.First thing I do in the morning is plan, I like having a plan. I want to be able to say when I can go back to work, I want to say when I will know if the medication change is helping, I want to sign up for classes and keep growing but I don’t have a time table.That is discouraging for me.
I come back to that question “What can I do…?”In t…

60 miles an hour to 0

I am not able to write, at this time.Looking at words and screens tends to make me dizzy, when I do type my fingers don’t necessarily work.I find that random words are spelled wrong, or I just type half a word, or sometimes only a few words in a sentence.I am beyond frustrated and I must use Adam as a proofreader for even simple things, like text messages.I can’t really read my own handwriting.However, I really wanted to share something with you all.
This past month has been terrible, I spent weeks in bed, a week in the hospital and was really scared.I left the hospital without a clear diagnosis and was forced to use my very foggy brain to put things together.Luckily, I had some clear moments and it lead me to a possible diagnosis and more importantly an amazing, caring doctor.This doctor spent over 45 minutes with Adam and I going over my entire medical history. As someone who has battled complex chronic illness for years, I am still overwhelmed with gratitude that someone took time…

Waiting for Transformation

Before I start writing I take a moment to pause, to listen to my breath and center myself.I ask for some guidance and illumination.Writing is therapeutic for me, it is one way that I start to work things out.It is one way that I claim what is going on and clarify the next steps I need to take.It sounds like this beautiful linear process.
I have been very sick, and still waiting for tests to help understand what is going on.I spent a week at home sick, a week in the hospital and I am still home sick.I am learning to eat and drink again, learning to slowly move and stretch again.It takes work.In fact, today is the first time I went outside by myself in weeks.
It is embarrassing, to go from sixty to zero and not know when I will be back to full speed again.It is frustrating, discouraging and isolating. However, it is still part of the human experience, and I am doing my best to put one foot in front of the other.What does that look like right now?
I eat very slowly, take frequent naps a…

Returning to Roots

When I started this blog, I wanted a year of pictures a year of things that made me smile.I wanted to be able to look back and remember that in some of my darkest times I still found a moment each day to smile, to be grateful, to laugh and to notice more than my struggle.It was vital to my survival.Why?Because Joy matters!
It is a stressful time right now, I am scared, overwhelmed and in this horrible brain fog.I only can see the step in front of me right now, and it feels unsure and steady.(Hence, I am up at three in the morning writing this, instead of working on my homework.)I find myself looking for the things that bring joy to my life, and I am a bit out of practice in remembering to take pictures.
Life is difficult, hard and heartbreaking; I see lives change everyday as part of my work.It is too short, loves.Those moments of joy, of peace and even calm beg to be noticed and celebrated.In the last week I have had many of those moments.I got to watch one of my dearest friends ma…


This morning I stepped onto my yoga mat and started my practice, as I inhaled and exhaled to reach my right leg back I felt this tingling, burning radiating sensation in my right foot and calf.I immediately started to adjust, engage abdominals, internal rotation, external rotation all kinds of different experimentation.The sensation increased, and so did my anger.I changed positions checking in, the sensations increased to the point that I couldn’t put weight on the foot, I couldn’t fully straighten the knee.My anger continued to build until that inner critic spoke up.
As I listened to my inner critic, and the emotions increased I paused.I started listing everything I was feeling out loud, anger, frustration, tightness, clenching, lack of support, overwhelmed, tired, worn, breathing in, breathing out, gripping, spasming, tears and as I sunk into child’s pose “humble.”From there my practice became another 10 minutes of crying and breathing in child’s pose feeling humbled.Feeling wonde…

One little word

I started this little experiment.  I wanted to figure out little ways to bring creativity back into my life.  I started journaling again, doing my best not to make it about the residency or my struggles but using prompts so it had a different focus.  Just taking five minutes a day in the morning or evening to writing something about the prompts, I haven’t noticed a difference yet.  However, I did notice that more creative projects started coming up in my life and most of them seemed like too much to do at the moment.  Until I found this one, one little word.  To journey through the year with one little word as my focus, again each month there would be prompts and suggestions but still room for creativity and exploration. 
This seemed like something I could find enough time to do, just a little time each month.  I first started brainstorming words, using some sparkly paper, because that is better.  I came down to a few favorites, I came down to a few that I NEED to be working on, a fe…