Orange Whip...

I was lying in bed and slowly reached for the orange juice on my bedside table.  I gingerly sat up, rested my head back on my soft leather headboard and closed my eyes as I slowly sipped my juice.  For a few minutes I was no longer here, in bed in Phoenix with this current body heavy and fighting to recover from four blood treatments in one week.  Instead my brain regressed and this juice tasted just like when I was a kid and my dad would make us a "special drink".  He would take the frozen orange juice and add more ice and whip it in the blender and serve the iced delicacy in a fancy glass. That memory diverged to his other special drink..7-Up with food coloring.  We thought it was magic, that electric blue or red iced drink, something out of Willy Wonka's Chocolate Factory.  Funny things pop in your head when you have a lot of time on your hands, time you would rather being doing something else...but your body is spent so you just lie in bed and wait.  I drift in and out of being here and letting my mind take my somewhere else...to escape for a bit.

Lucky for me those memories meandered further and sparked the voice of my cousin Tom reciting some movie line...what was it...orange crush...no that's not it...ahhh  orange whip and I started to laugh.  Of course, the Blue's Brothers, John Candy,  how could I forget.  The magic of google brought me to the scene my cousin would at random times recite..."orange whip...orange whip...three orange whips" and the two of us would be in tears laughing...he would repeat this phrase for no reason at all with no context to make it appropriate...all that matters was that it was funny...it's only 15 seconds but what a difference 15 seconds feels like when you are laughing. 3 Orange Whips

The movie "The Blues Brothers", directed by John Landis. Seen here, John Candy as Burton Mercer. Initial theatrical release June 20, 1980. Screen capture. © 1980 Universal City Studios. Credit: © 1980 Universal / Courtesy Pyxurz.

Beating Gratitude

Hearts in Nature

There are theories that we only get so many breathes or so many beats of our hearts in a lifetime...I am hoping this is incorrect.  My resting heart rate is still around 94, which is considered "poor" by all standards, especially considering my blood pressure struggles to reach 100/60 and I am not overweight.  It's a sign that my body is still stressed, still fighting off infections.  But when I see these numbers it reminds me of those creepy clocks you can get that counts down your life expectancy.  Who in their right mind would want to stare at that all day...not me.  My heart may still be beating too fast, but it is filled with gratitude.  My amazing friend here has been well, my heart is grateful.  After the third blood treatment in a row yesterday as I got home and my heart was pounding out of my chest just to get upstairs to collapse into bed, she continued to care for me.  She dealt with the cable guy, she dealt with a bed delivery, and without me asking she made me dinner and when I didn't think I could eat she gently pushed me to so I was taken care of before she needed to leave.  These are the things that make your heart swell with gratitude, these gestures of kindness, sometimes you just have to accept that it is your turn to accept the graciousness of others.  Humble, it makes you humble.

This is my simple religion.  There is no need for temples; no need for complicated philosophy.
Our own brains, our own heart is our temple; the philosophy in kindness..

My heart is well cared for these days, and although it continues to beat too fast, I am grateful that it feels loved.  All of this support and kindness directed my was has brought strength to that organ that had begun to collect pretty many scars.  When this illness started, now almost 8 plus years ago, every day I felt as if it not only chipped away at my body, every day it broke a piece of my heart.  

This Eddie Vedder video is beautiful and it speaks of how he feels his entire being changed when he had his daughter..."it changes your brain waves...your chemical reactions..."  I couldn't agree more and can not thank all of you enough for writing to me, commenting on my blog, reading and sharing...it has begun I truly believe to change my DNA.  Thank you, for you are now apart of this journey and you have made my heart stronger.

Eddie Vedder - Skipping - 

I want to comment in case people reading this are CFS sufferers...I am doing a completely unconventional treatment protocol with an extremely talented doctor.  My high heart rate is consistent with Orthostatic Intolerance that nearly 95% of CFS/ ME individuals suffer.  I have chosen not to go on beta blockers, with the blessing from my cardiologist.  However, please take the time to read Sue Jackson's blog post regarding beta blockers and how they have helped her and others.  Whatever works...that is what i say...whatever you find that works for you...In Depth Information on Beta Blockers for CFS and Heart Conditions we deal with. 

Tilapia Tears...

It's been one of those days...that you are just waiting for the one kind word or gesture or the one little thing that goes wrong and you know you will be in a puddle of despair.  It's Thursday, and my day "off" from the doctor, but all that really feels like is a really long day by myself.  I came off of a weekend that I managed entirely by myself.  Then three days in a row of blood treatments, one in which my vein collapsed so we needed to change arms, and yesterday where we needed a side arm vein so my arm was bent and my hand began dripping in sweat.  When I got home after the treatment it took everything in me to get upstairs as I climbed the steps my heart began pounding out of my chest.  I have been doing so well, this is to be expected, but never pleasant.  My dear friend had dealt with the cable guy, dealt with a bed delivery, cleaned the kitchen, made me a lovely dinner with out asking if I needed it and fed Sophie.  As she came upstairs with my dinner I wasn't sure I could sit up to eat, but she gently persisted that I needed some food in me, and nothing tastes better than a meal prepared with love.

However today I woke up wondering how in the hell am I going to do it all by myself today.  Kristine, my helper, has a cold and therefore can't be around me.  Minute by minute I managed.  In these moments of fatigue you need to take every task and minimize it...get eggs out of refrigerator, get butter, crack eggs, find your stool to sit on...it is fatigue so overwhelming that the thought of scrambling eggs seems like too much work, that adds a fork, a bowl and mixing to the situation.  I got through the mid-morning pretty well, then drove Sophie to the groomer. I decided I needed to see people so I went to the resort and just sat and people watched.  Then as I was picking up Sophie I could feel it come crumbling down.  I haven't had much of an appetite today, the thought of making and eating seemed like too much work.  So at about 8:30 I began to heat up the spaghetti and meat sauce and sauté some spinach...you can do this.  Then I opened the refrigerator and realized that Sophie was out of her food.  I opened the freezer and thankfully there was frozen tilapia for her...but that was it...it was frozen and that was the break in the damn and the floodgates opened.  Why, why is this all so difficult, I looked around at a kitchen full of dishes, stared at disdain at the pasta that had become dinner last night, lunch today and dinner again...I looked at my sweet dog that I didn't know how I was going to take outside...and then wondered how am the hell am I going to do this when my best friend here leaves in 5 days for Europe?  The walls just came crashing down on me and the acknowledgement that yes I am better but I am not healthy enough to manage without help smacked me in the face.  I picked up the phone and dialed my friend and she said she would be in the car and make it here in 20 minutes...no, no I am fine...I just needed the cry and the tilapia it just gave me the excuse.  Sometimes, you just need the excuse.

Little Voices

"I decided to start anew, to strip away what I had been taught." Georgia O'Keefe

To heal:
1.  To restore to health or soundness; to cure.
2.  To set right, repair.
3.  To restore ( a person ) to spiritual wholeness.

Chronic illness often robs us the ability to heal.  It is content to live in a homeostatic state that marks improvements so small they would never be statically significant.  My aunt recently wrote me an email that said, "it is like you stepped out of a time capsule and we are so glad to have you back..." I would like to say I haven't realized I have been gone, but nothing could be further from the truth.  

Goals become very difficult with this illness.  You set them and you get use to failing again and again. The moment you no longer even try to set them is the moment you have left the state of denial and are forced to redefine your hopes and aspirations...it is also the day that you longer recognize yourself.  You are someone that isn't use to failing or giving up, but your body is not cooperating and the harder you try the further you fall.  I read blogs every day and hear my cyber friends struggling with achieving goals as simple as getting out of bed.  I remember those days.  I still have those days, but along with them I am a tip toeing back into life by trying to achieve some "success" with this blog.  In my heart of hearts I achieved it the second I stopped ignoring the little voice that kept whispering to reach out, and that whisper got louder or I got stronger and I took the first step of reclaiming a piece of my soul.

Photo Credit...Christopher Marley
Artist - Christopher Marley Website

With trembling hands, as if I was asking someone out on a first date, I typed the email that was the beginning of starting anew.  And with nervous anticipation I waited to see if it would be answered.   The day I took the leap of faith to reach out to Alex, was the was moment I told myself that I still mattered.  It was the moment that I realized perhaps there is hope if not a cure, at least a movement towards repair.  I sought out Alex for her knowledge and expertise regarding writing and publishing, asking her the horrifying question of "am I good enough?"  Sharing your dreams or your aspirations can be a dangerous game and for most of us that is why we keep them for the late night musings of the unconscious mind.  But danger reaps great rewards, her honest, thoughtful and critical observations gave me the courage to strive for a goal again, to self promote, to tighten my writing, change the format, to watch and analyze "hits" she made me accountable again.  She pushes and suggests and every time she emails with suggestions or constructive criticism I get to be reminded of the pre CFS me, the hyper vigilant, over achiever that completed one goal only to find another.  She treats me like I am not sick and though I can't do things as fast as I would like or have the energy to perfect every detail; every time it makes me smile remembering...ah this is how healthy people think...I use to be one of them.  But post CFS life has taught me to just enjoy the little moments, be grateful for any little shift.   Therefore, when someone said to me, "why would people want to read it, it's not as if you have cancer," I merely shrugged that comment off and took it with no malice intent.  I replied that's not really the point now is it and it felt good to be back.

The Mating Season, Alex Brunkhorst

Bungalux website by Alex Brunkhorst
Bungalux Website, Founder Alex Brunkhorst, Post highlights artwork of Christopher Marley

Find Your Own Wings...

And you will realize that you can fly....

".. My mother used to teach me "Cinderella is a perfect example to be" but I have learned that Cinderella can go fuck herself, I'm not waiting for anybody, anymore! I'm going to run as fast as I can, fly as high as I can, I am going to soar and if you want you can come with me! But I'm not waiting for you anymore.”   - C. Joybell. C.

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