Wednesday, July 25, 2012
Tuesday, July 24, 2012
i heard him tell me that i am more anemic now than when i started this whole journey 3+ years ago
and then i asked him to print out the numbers for me and there they were...
lower and lower
i'm at an all time low.
and that's pretty darn low people.
i heard him tell me that i was making my life more difficult for myself by being on a liquid diet and that there is no reason to not eat whatever i want to.
he told me that my reactions to food have nothing to do with my colitis and i have a different disease that is causing the flares and the love affair i have with the bathroom.
he told me that the side effects to the remicade were not good and that it wasn't working since i'm not in remision and so i wouldn't have to take it anymore.
the call was made. the remicade was discontinued.
just like that.
a gut wrenching decision that took me so long to accept was so easily reversed.
i found this disconcerting. even though i don't want to take the medication i still was rattled by the ease of the decision.
that was after i described my recent symptoms and side effects and he asked me
"are those known side effects of the medication i put you on?"
does he not know? does he not know?
this was not some easy going medication. remicade is serious stuff.
i just think he should know.
just know what you are giving to people who are trying to trust you and trying to get back to living.
he spoke about the waste of money it was to eat organic and how there was no difference between the two
and i tried to explain that i grew my veggies and my mom in law provided me with kefir
i wasn't wasting money i felt like i needed to say
i'm trying to get my life back.
i felt like i needed to defend myself and i'm not good at defending myself and i cried hot tears at this point.
"what's kefir" he asked?
and then proclaimed no difference between raw goats milk and store bought cow's milk.
he was full of proclamations
and no answers
and i felt like i was frustrating him because i'm not responding to the treatments the way i should be and i'm not improving no matter how many prespcriptions we try.
the next one's are all in the research stage and i whispered
"no thank you, i'm not really into being researched on"
and finally, he looked me up and down and said
"you're not really sick. you don't have a fever or malaise do you?"
and i reilized this relationship was over.
i cried all the way to the beach.
and then i let the wind and the waves wash away the anger and the confusion and the hurt and the shame.
when owen got home from work i asked him if what i heard was true
"did he really say those things?" i asked him,
wondering if maybe i was misunderstanding and too upset to be accurate in what i was taking away from the visit.
i think i was secretly hoping he would say yes.
yes, i did hear wrong and here is what he said...
but owen shook his head,
looked at me with great sadness in those hazel eyes of his because he had been there with me and he knew, just a little bit, how hard that whole visit would have been for me.
and again i'm staggering.
not under the weight of loving words though, like last week.
just under a weight.
i looked up the definition of malaise this morning.
check it out..i think it describes how i've been feeling pretty accurately.
i guess my outside's just don't look like my insides so i can trick people still.
should have worn my pj's and not done my hair.
maybe then he would have taken me seriously.
Monday, July 23, 2012
Saturday, July 21, 2012
went to see Dr. Cindy again
and booked a follow up appointment
drank coconut water instead of a caffeine loaded Refresher
even though i love the new sbux drink i know it has too much caffeine for me
went to 2 appointments with a new naturopath whom i feel very comfortable with
today's session felt like therapy but i think i'm okay with that
loaded my fridge with healthy greens while creating garden baskets.
normally, i send it all to others but now i am going to keep some for me
walked barefoot in the garden
journaled 2 days in a row
recognized that i have made alot of progress these past 3 years and i am capable of more
created a canvas to remind me to keep going when the days get tough
Friday, July 20, 2012
my journal has sat blank for about a month
this space has been quiet for most of this week and last.
my art supplies are still neatly tucked into the cupboard where April lovingly arranged them when my house was love bombed.
my emotional walls have been being reinforced with the morter of pain and confusion and despair.
the sun has been shining
our family is tightly knit these days
and up until a few days ago i even had kept up with the house.
the garden at the farm continues to blossom
there have been times of sharing and laughter
bumpy truck rides to the estuary
late night fires and just the right amount of mojitoes to share.
but in my heart and my body and my mind and my soul
there was only pain.
and i couldn't talk about it or write about it or create about it.
i temporarily lost my voice and my hope.
oh how quickly we slide when we let go and allow the physical pain to win.
when we let go of what we need to do to keep on going.
i'm still figuring out what i need but i know that at the very least
i need to be in nature and i need to write and i need to speak through my journal and art because speaking with my voice is tricky still for me.
my voice gives away the inner pain and anger and sickness so i prefer to keep silent when possible.
(yes i know...working on that one)
it was gradual i think.
but i've felt it these past few months.
the new depression, the increase in symptoms, the fatigue
i didn't do anything to reverse or halt it.
not sure that i could have so
i've allowed myself to keep falling
until tuesday night in the backyard surrounded by weeds as high as my knees
i listened to the one who knows my heart
and who loves me enough to risk my hot tears and angry initial reactions to words that while spoken in love,
still sounded harsh and judgemental and made me want to scream
"you don't really get it do you?!"
but of course, i don't scream because, well that's just not how i communicate when hurt.
and he of course, agrees. he doesn't get "it"
there is a
messy, ugly,vulnerable and oh so risky
conversation hanging in the air.
his intent is all love.
i am choosing how i hear his words.
i need to choose wisely.
i need to choose wisely.
he also feels the deep emotional pain of our journey these past three years.
he is not a passive bystander offering unsolicited advice.
he is fully commited.
self pity, the pain, the lack of control and failed progress all come crashing down all around our feet.
so many setbacks. so much disapointment. it would be understandable and easy to focus on those.
i staggered for two days under the weight of his words.
words that spoke of giving up on hope, of needing to remember that i will be well again, that i do need to take care of myself, that he misses me, that my to do lists never mention me- it only mention others and that maybe, just maybe i need to consider why i won't take care of myself. why i won't make myself a priority.
why i don't believe i will get well anymore when just a few months ago i still beieved i wasn't really all that sick despite the symptoms. my heart and head were still proclaiming "i am well..don't let my physical limitations bother anyone..."
how did it change so fast?
i reminded him that in my world, in my mind, in my heart
i have been working so hard.
but not hard enough he reminds me again.
hot tears sit on the surface of my eyelids and i am angry.
and again feel the rush of emotion.
i need to choose how i hear his words.
and i need to let down some walls
if we are going to survive.
after a few silent, agonizing moments
he does allow me the healing balm of recogizing and affirming
which i so desperatly needed at that moment.
(please see what i have been trying to do, i beg in my heart, please)
that from who i was, to who i am becoming i have indeed been working very hard.
and he showers love upon me and reminds me that this conversation is not about the past but about our future.
and that who i was, was enough. was lovely. was remarkable. was a gift to others. that who i was isn't a person to criticize and abandon.
but i'm being made into someone new
unless i stop the progress and continue to slide.
i need to look forward. not back.
i know this stuff. and it drives me crazy that what i know so well, and what i have always tried to share and role model to others feels so impossible in this moment.
he believes in working harder than we think we can, pushing ourselves to that next place.
(this is one of the reasons i love him so-
he has gone far,
quickly because of the standards he holds for himself)
right now, in this season of my life, i just believe in getting through the day. the moment.
and this is enough.
as long as there is a plan he reminds me.
"you are the queen of plans!"
he says with slight exasperation in his voice.
at least i think it's exasperation but actually it is more a relief.
he is speaking my language now.
the langauge of research, how to books, lists and learning plans and sparkly stickers.
perhaps i can use that in my favour.
the stagger began to feel like a solid walk yesterday.
i felt a shift.
a tiny shift.
and it has freed up some room
and my hope seed soaked up the nourishment.
(i will be back to this space again, daily, faithfully and it might get messy and self serving for a while as i process what the future looks like for me.
talking away about myself. my issues. my health. maybe even details. all about me it might seem.
but hey, it is my space so i guess that's okay.
thanks for journeying with me here.
and as always, comment away if you feel led..i love to know who's sharing my heart)
Monday, July 16, 2012
i didn't know this photo was being taken.
which is weird. it is strange being on the other side of the camera/iphone
me. a moment in my weekend.
this weekly Monday practice of posting a weekend photo reminds me
of just how fast time speeds by
and how we have so much to be grateful for
and that staying in the moment as much as possible really is a wise idea
the days are long
but they have been longer
the days are hard
but they have been harder.
i live a blessed life.
i need to remember this.
Thursday, July 12, 2012
i'm reminded (again) that if i continue to put one foot in front of the other
there will be progress.
i can't possibly know what tomorrow will bring and i certainly have learned that i don't control the future and the journey i am on.
i do however get to be an active or passive participant and really it is up to me.
(i so want to be an active participant..i so do, and i think i am)
on those days where the blanket is heavy and the hope bird sings so softly i can't hear her i need to remember the daily discipline of staying in the moment, watching the shifting sky or seasons and remembering to put one foot in front of the other.
the sky is such a constant reminder that whatever we are facing right this moment will change. the sky never stays the same.
and neither do our circumstances.
on the days when i am warmed by the sun and my mind is clear and my heart is full and i easily notice the songbird, i can recharge, remember, process and prepare for the next hard days.
i think this might be vital.
allowing the dark days to be dark.
accepting the moment instead of panicking or treating myself harshly
and then filling the light days to the very brim with goodness. recharging.
storing up treasures right?
accepting that i can't always be flying high with energy and optimism is key to getting through the harder moments.
remembering that around the next corner, the very next moment, the next day, or week
(or years sometimes)
there will be joy.
there will be exactly what i need.
i love that i am beginning to be a part of a story that has deeper chapters.
there is a maturity that comes from long, dark walks in the deep forests of our lives.
and the eyes that i am developing are becoming better and better at seeing the beauty just around the corner.
yesterday when i was in the garden i wandered the paths and stumbled upon these hollyhocks
they bloom from the base up and because the garden is new to me
i often come across plants that i didn't know were there.
they are stunning and currently hidden deep down in the foliage but oh how majestic they will be when they bloom full up to the tip top!
that's alot like us right?
we are blooming!
and oh how majestic we are!
Wednesday, July 11, 2012
that i am going to give Astilbe a place in my garden because it really is quite lovely after all
that i have a dear new friend whom i don't know very well at all but she sends me emails with wisdom and love from a monk named Henri that always seem to say exactly what i need to hear
and have i mentioned
that i don't think i planted the garden as intensively as i should have but that is okay because it is a new venture and these things happen sometimes.
lately, at least for yesterday and today the fog has lifted from my hazy brain.
i might mention that this follows a very dark day where hard words were spoken and tears flowed and i didn't know if i had indeed given up hope after all.
have i mentioned that our chickens each are laying an egg every day now!
that's 6 eggs a day from our little back yard chicken coop.
have i mentioned that when my house was love bombed two weeks ago the feelings that washed over me were ones of gratitude and relief.
gratitude for the gifts of time and hard work and relief that i found the spaces of my house that were lost.
i should mention that right now my kitchen counters are so messy there isn't a clear spot but i would much rather be typing this list than loading the dishwasher. i am grateful that i have the energy to think about loading the dishwasher today.
that is worth mentioning.
many days i don't.
have the energy that is.
have i mentioned that there are dragonflies and butterflies and woodpeckers in my back yard.
this makes me happy.
Tuesday, July 10, 2012
there seems to bbe a shift today.
it was a very very good day.
today my body cooperated with me and moved freely as the sun warmed it
and my muscles moved a little more generously.
there was dreaming and planning and implimenting that happened today.
we are setting up a summer campsite and i can imagine the evenings spent there
together under the stars.
tonight is date night with Owen and i am anticipating a long conversation that will take place on a patio somewhere warm
today was a very very good day
Sunday, July 8, 2012
Friday, July 6, 2012
to really know how i am doing deep down inside one needs to look no farther than the kitchen.
there is a very delicate balance that goes on when i cook what i cannot eat
my relationship with food up until my colitis journey began was fairly benign.
i ate whatever i wished, minus a few allergy issues.
i didn't really love food. i ate because i was hungry. or just because.
i didn't appreciate the deeper connections that are forged over a shared plate.
i didn't reilize that food is so much more than feeding hungry bellies.
it feeds the soul. it connects individuals. it invites company and companionship. it bridges gaps in relationships. it forges new friendships.
food sharing allows for heart sharing.
food binds us together.
i like connections and i love a well spread table. i have been known to host a decent party and i love giving gifts.
those gifts often take the form of food.
so today i am thinking of this topic because i said yes to a potluck.
this is a loaded situation for me because this invitation comes at the end of a long week of flares, dehibilitating pain and a liquid only, as a means of staying out of the hospital due to pain, diet.
(last night i almost went, imagining the pain medication numbing my body for a brief hour or so, but really, it was too much work and the flares always pass and well, pride still dictates my willingness to put myself in the hands of the medical community.)
i am grateful for the invitation. i am grateful when my friends treat me as they always have. with invitations to events that i will not be able to fully participate in.
it is possible i am even excited for this evening and that is rare these days being i am currently wearing this heavy wool blanket of depression.
so, what to make.
i choose bruchetta. it seems fitting
being i love to garden and cut and mix and keep ingredients as true to their nature as possible.
and bruchetta also makes for a lovely photo opportunity.
yes, i sometimes create things just to take a picture.
cute, yes? or just weird?
i'm okay with either opinion.
the balance is this.
if i am in a place where i understand that my colitis is just what it is and there is nothing i can do to change that at this moment then i can cook and smell and observe and enjoy company and companionship while sipping my kefir
when i am angry or feeling hopeless or self pity about my condition then i am unable to be content with what my body needs.
(not that i've really figured that out yet, but i'm trying)
i want. i crave. i sneak. i ignore my body. i indulge. and i pay.
oh i pay...mightly
and occasionally the reilization that i can't eat anything is so intense that i can't even be in the room with food.
so i hide. i isolate. i say no to invitations. i shrink.
and i don't cook.
the kitchen remains quiet and i avoid it.
today is a cooking day.
and a connecting day.
and a grateful for invitations that i feel brave enough to accept day.
Thursday, July 5, 2012
it all comes full circle.
i am where i am on this journey for a reason
this experince or combination of experiences are not happening "to" me,
they just are. they just are moments on this journey
this is hard to remember sometimes but i must not forget.
i believe i am being watched over and cared for and am not abandoned or alone
and that this journey is laid out for me and it has an ending that is perfectly perfect for me.
(these razor clam shells remind me of angel wings)
there is beauty everywhere. i have not forgotten how to find it even though i think i have. my photo journal of my day reminds me that i have not lost my way.
every moment has a gift. a tiny gift some days, a ginormous gift other days.
the secret is to notice. always to notice.
then the day isn't wasted.
the moment isn't lost to the pain and the confusion and the despair.
the gifts always comfort and propel me forward
just one step at a time and before i know it
the day is done and another one is anticipated for tomorrow
tomorrow is always a new day.
a fresh start.
but first it is so vital that i stop and honour today.
all that there was for me
and hopefully all that i shared of myself
makes today remarkable
and filled to overflowing with gratitude and gifts.
Wednesday, July 4, 2012
it feels like the words i speak don't make any sense and they certainly don't match the constant coversation that is going on inside my head. i sound much smarter in my head and then when i open my mouth to have a conversation, or share an opinion or a thought,
i just feel jumbled and mumbled and stupid.
i can see why depression leads to isolation.
it feels like even though everything that is happening around me is bright and beautiful and amazing and blessed, it doesn't really make a difference.
there is a heaviness.
it's the blanket that gets spoken about in books and TV commercials regarding depression.
i recall hearing about this feeling of having a heavy wool blanket on top of you all the time
and it would feel dead weight and smothery.
turns out "they" were right.
and wet wool blankets are not only heavy. they are stinky too!
this depression of mine feels as though the days are soo long but also soo short because in my mind, i have accomplished nothing but in my body i have run a marathon.
how is it that walking up the stairs can feel like the hardest workout ever?
i never thought any of this were possible. it wouldn't happen to me. it can't really be that bad can it?
i am truly amazed at the rapid transformation that has overcome me and i am so ridiculously self aware and somewhat "educated" about such conditions that my inner dialogue is like a counselling appointment gone bad. or on speed. not sure which.
it sucks though.
did you know that food tastes flat. the sky looks flat. the ability to create art has all but disappeared, the sweet strawberries look so red and inviting but i can't really be bothered to try them.
this is not complaining.
it might sound a bit like it but honestly it is more a complete confusion and astonishment that this is what has happening to me. and i don't seem to be able to do anything about it.
there's another one of those stories i had only heard about and not really understood.
the inability to do anything about it. the need to let it run through and work its way out the other side.
i can positive self talk and rest and honour and be authentic about depression all i want but it would appear that until it has finished here, there is no leaving.
this suprises me.
surely i can talk, walk, pray, feed, medicate, journal or deep stretch my way out of this condition.
apparantly not because i am too tired and unmotivated to do any of those things.
i had to walk up the stairs this morning and am now done for the day!
oh life. you are teaching me so much.