Lipstick Effect

The acute crashes due to treatments take me back to when I had mono as a child.  I didn't have lipstick back then.  This morning as I shook and kept seeing bright "stars" in front of my eyes, I trembled as I put on some lipstick hoping the facade of bright lips would make the misery diminish.  I hate self portraits, but I snapped the one with my eyes closed and there is the real me.  The me I am trying so hard to escape from, the girl on a ledge, holding it all together minute by minute when this fatigue, pounding heart, shaking hands, dizziness, nausea and weakness converge like the hot humid days of summer when you feel the storm approaching.  My mom left this morning, and I felt a bit like I was sending her off to college, it is never easy for her to leave.  However, I am stronger even in my weakest moments.  I am alone right now besides my baby next to me.  I was at the doctor and despite muscle testing positive for a blood treatment she wouldn't do it feeling I was too weak.  The burst of energy yesterday now requires patience as I am not clearing the infections as fast as we killed them off.  So instead, I rested.  She did a colorpuncture treatment and got me an herbal tincture to help clear the infection from my kidneys and spleen.

I got home and my "nurse" real life doctor friend gave me a hydrotherapy treatment, made my dog dinner, made me dinner and all I could barely do was look up and say thank you.  Sometimes that is all the energy you have is to say thank you, I am dependent upon kindness and generosity and I am lucky that I am receiving those blessings.  I am in bed now listening to my TKS playlist that normally lulls me to sleep, but I just lie here arms so fatigued that I finally willed them to grab the phone and hold it in my hand in case I needed help.  That was two hours ago, so there is marked improvement since I am typing.  Kind of like when I was scared I got glass in my eye...I posted on Facebook at 1am... I am typing therefore I can see therefore I do not have glass in my eye.  Well, here we go again, I am typing, therefore I am not passed out, therefore I am okay.

I was upset with myself earlier today because I try very hard not to put my illness above other people's unique set of circumstances or problems.  But my best friend called and wasn't feeling well, and began describing her symptoms, and many of them were what I deal with day in and day out to varying extent and at that very moment..I wasn't my empathetic self.  I wasn't rude, but I wasn't my best self.  To be fair I was too dizzy to drive myself to my appointment, too nauseous to eat more than a few bites at a time, waiting to see if 1/25 of my blood was going to be removed and shoved back in, and I don't know if this is ever going to end.  Sometimes I put on too good of a face and perhaps if she would have said, man now I know how you feel everyday...lumped the shared experience of misery together...then at least we could have discussed our symptoms together.  Instead, I felt myself trying to "one up" or "yeah I get it..."and "how do you think I feel" and that was not fair.

This is on me, no one else.  I put on a good face, an Oscar worthy well maybe daytime Emmy winning performance most days and hide behind the mask of this is just a minor bump in the road.  Even those closest to me I don't allow them to see the really ugly side of this illness.  I try my best to diminish how daunting it all is, but perhaps I am just diminishing the experience or worse diminishing myself.  Add to the fact that when I am here for treatments everything is super sized.

So to my dear BFF please accept my apology.  I am sorry.  I was snappy and I unwillingly in that moment didn't give you the support and understanding you deserved about your bad day.  In that moment I was so scared that I was going to pass out I should have said that.  But instead I shielded you from the seriousness of the moment by diminishing the seriousness and unpleasantness of yours.  Sometimes I honestly forget what it feels like to be healthy and how scary and difficult stuff that I deal with every day feels when you are not use to it...hell I'm use to it and it scares me to death.  I love you nerd and hopefully you were so tired you didn't even notice.  But in case you did, I am truly sorry.

The lipstick effect, it's a band aid on a gushing wound, but sometimes all you have is a band aid so you better use what you've got and remember that yesterday you didn't have to fake it.

Balancing Blush

Breathe and Focus on the View

The true self portrait - just trying to hold it together

Finished Product...go out and get that Daytime Emmy...

Reality Bites

Arizona Biltmore Resort

When I first arrive in Phoenix it feels like a vacation.  I have left behind the gray fall days and entered a palm tree utopia that suspends reality for resort like living.  Then I get my treatments and reality bites.  A body waking up again from it's chronic slumber slaps me in the face and reminds me this is no Disneyland.  The pay off though is huge.  After three days of intense fatigue and post-treatment effects after today's blood treatment I felt alive again.  This is the reality, when you are smothered by this illness, you are living - but you never really feel fully alive.   So last night when my mom, Sophie and I were able to head over to the resort,  I played the part of healthy girl taking a well needed break from reality in my own little Disneyland, enjoy the "vacation" photos.

Have you been Naughty or Nice

Treated to Fireworks from our Balcony that were taking place at the Resort

Pretty Little Liar

I try and put on my best face and best attitude and say that all that matters is that I have tried my best.  Perhaps I am just a pretty little liar, as the night moved on to night sweats, body aches, fatigue so bad it was hard to reach for water and an upset stomach the endless word chronic came crashing down.  The truth is, I have no idea what is in store, all I know is this time it all seems more difficult because I left someone behind.  This illness is filled with sacrifices and lessons and joy and misery.  Somedays you have it all in perspective and are the fighter and then there are times that you surrender to the grief.  You don't give up or stay in that place of sorrow for long, but to ignore it can do more harm than good.  You acknowledge it, and move on...tu me manqué.

www.sandrapriebe.com
Sunrise over Lake Michigan 

Treatment Time

I love words and I am trying a bit harder to use them less frequently and more effectively.  I have always loved to read, loved the smell of books, but most of all I love the phrases that stay with you long after the memories of the story fade.

I arrived in Phoenix last night and had my first blood treatment this afternoon.  When I came back  home I was overwhelmed.  The reality of my life and this illness back in full view.  My appetite was lost and behind my eyes a faint headache reminded me of the fact that getting well isn't always pretty.  Then I looked out onto the balcony and soaked in this sunset and all it conveyed was hope and I thought to myself,  if this is as good as I get, as healthy as I get, this will be enough because I tried.  If these treatments offer no more improvement than what I have already gained, I will find away for it to be enough.

And I will know that to the depths of me I have tried my best.  I have tried not only to find the most effective treatments but more importantly I have tried to be my best within the often collapsing walls around me.  It has been like fighting for extra mortar when everywhere you look a new leak has sprung in the crevices of your foundation  But you can not let yourself be submerged, you will not drown, you will not stop trying.

"We try.  All of us.  We Try." Richard Ford.  Those are the last words from his book Canada, which I have not read, but seems like I should.  The story doesn't really matter that much, the end tells you the beginning.

Safety and Security

There is a little truth in all of this...hoping just a little...

My mom had a brilliant idea when my sister was younger to "rotate" security blankets.  After being embarrassed by the rag that I carried around as a young child she thought that by having three that my sister bonded with she would always be carrying a crisp clean blanket.  The plan back-fired.  Instead my sister carried around three dirty dingy security blankets.  One of my friends from grade school - she was so attached to hers that I remember the Christmas card that if you look closely enough you can see behind the green velvet dress the one arm slightly behind her back and the ragged blanket just slightly in view.

I'm heading out to Phoenix again today, and yesterday I had a rough day.  I went completely out of my comfort zone and went to someone's home for dinner.  They were so generous in spirit, and didn't make a fuss when I decided it best to not eat at all and just enjoy the company.  I was forced to bring my security with me - it was rough going but I had a hand to hold and encouragement and love.

I stopped over to my sister's this morning and saw my neice's room.  She told my mom she is trying to stay in her bed all night long so she has every stuffed animal she can think of in her bed.  When my mom asked if it worked, she shrugged - no not really - well at least she is trying.

This time the tables have turned - because I am leaving someone that with my absence feels a little less safe.  And it's hard.  This is a first for me, realizing that my leaving affects someone that I love.  It's been hard to watch someone this morning try and be stoic and cheer me on and encourage me that this is what needs to be done, but it does not go without sacrifice.  I know that feeling that is how I use to feel leaving and instead leaving now is the window to my future.  I have a hard time being around others when they are upset.  I have to force myself to shield myself from their symptoms and not physically take them on myself, since that helps no one.  So we take it one moment at a time and I know he will do well, it is always being the one that is leaving and not left behind.  And we know this is the only way - this fight for my life back it has many casualties along the way.  It's just I wish I could give him some extra security while I am gone...seems as if my niece has a few guys to spare...but then again it didn't really work, but all we can do is try our best at any given moment in time.

Security and safety must be found on their own inside of oneself with a team around you to support your efforts.  It has taken me a long time to find my team and it has made all the difference.  Now it's time for me to help someone else find theirs.

When I use to have trouble flying, before take off I would imagine Georgia O'Keefe and her love of painting the view from an airplane...beauty, art, love, this where I try and find calmness when it's nowhere to be found.

Fearless

My writing "coach, mentor, cheerleader" has encouraged me to show more of myself...they need to see you understand you....it's a hard thing to do...where do you draw the line..how do you tell your story while not telling the stories of others...there is an art to it that i will slowly wade my feet in...but this is a fabulous post about just that by someone who took that leap of faith - courage -
This will take you to the blog...the post is called Eclipse.

Momestary

The Art of Happiness

It's the day after Thanksgiving and compared to last year I did really well.  It was also the first Holiday where the the only Grandparents at the table were my parents.  My niece got her first taste at eating at the big table and even had the small crystal glass to hold by the stem with her little pinky extended.

My parents made me a separate dinner, and it only bothered me after the fact to see the feast in front of me that I couldn't eat - the reminder when I got home of the frailty of the moment.  I had made chocolate chip muffins and in the "safety" of my home began eating it and the instant it touched my mouth my mind was confused because it tasted like a fruit.  I immediately popped a benadryl and thought I was making things up, and then later that evening it clicked...I had washed raspberries for a care package and I had dried them on a paper towel on the counter...somewhere along the way either when I made the muffin or I set it down it transferred the slight cross contamination...this is the frustration.

I'm fine a bit strung out from 2 Benadryl - and a bit congested still this morning - but overall fine.  The thing is this is the second time this week I have been less cautious.  For the first time in 7 years I missed my phone appointment with my doctor...completely slipped my mind.  She called me the next morning to answer a question I had and I asked why she didn't just call me and she replied..."I just figured you felt good."  She was right I did...the second the fact that I even decided to wash and prepare berries without a massive overly cautious dialogue in my head.  I didn't scrub the counter down - yes I got a minor reaction but in the big picture I have slowly stopped becoming so obsessed - that is hope.

You don't have to Buddhist to appreciate the Dahlai Llama - in fact that would just be a shame if you did.  I was reading The Art of Happiness from His Holiness the Dalai Lama and Howard C. Cutler, M.D. this morning, because to be quite honest yesterday I was extremely happy and sad at the exact same time.  Happy by how far I have come yet a deep buried sadness of all I have lost while being surrounded by all that I have gained, and realizing how far there is to go; not knowing if I will ever be released from all the confines this illness holds.  So I picked up this book figuring I could use some perspective and came across this paragraph and thought it related well to this blog of "hope".

Spoken from the perspective of Howard Cutler in the introduction to this book The Art of Happiness.  "By the end of our series of meetings I had given up on that idea (a set of easy instructions on how to conduct oneself for happiness)  I found his approach encompassed a much broader and more complex paradigm, incorporating all the nuance, richness, and complexity that life has to offer.  Gradually, however, I began to hear the single note he constantly sounded.  It is one of hope.  His hope is based on the belief that while attaining genuine and lasting happiness is not easy, it nevertheless can be done.  Underlying all the Dalai Lama's methods there is a set of basic beliefs that act as a substrate for all his actions: a belief in the fundamental gentleness and goodness of all human beings, a belief in the value of compassion, a belief in a policy of kindness, and a sense of commonality among all living creatures."

Hope - the possibility of attainment - acquiring that happiness despite of our circumstances.  Knowing we can only change so much, what matters is how we adapt to the changes we never saw coming.  Change as the saying goes...the only thing we can depend upon.  This illness is changing for me and I moved up my trip to Phoenix by a week because I can slowly feel the change, the subtle changes of a body regressing and I can change that - I can get on a plane and go find my hope.