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Showing posts from 2018

what if there is no answer?

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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 o…

The heart

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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 f…

courage

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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 wai…

Garden

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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 a…

Raw

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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.

Hats

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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 talisma…

Anger

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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 beca…

Results?

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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 lit…

Relationships with Symbols

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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

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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

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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

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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)

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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

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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…

Storms

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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

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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

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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

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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

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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…

Softness

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…