get what you need...

My Friend Dr. Forrest Beck's Book
Cultivating the Fine Art of Selfishness

It's hard to ask for what you need.  Perhaps it's the biggest lesson I have learned if I look back with nostalgia on the last year.  You learn how fragile love is and sometimes mistakes we made way in the beginning set you up for success or failure without you even recognizing it.  That is the hardest part, sometimes it is just too late, and that would be the saddest love story of all if you didn't take the lessons from the past and try and right those wrongs.  I am slowly learning that asking for what you need is perhaps the least selfish of acts.  I will get back at you in 2014 and let you know...

I am not very good at saying good-bye, in fact in a world filled with enough pain to "fill this planet" there is rarely a situation that I can point to malicious intent and lay down the gauntlet of forever shunned.  Perhaps it comes from living a life a bit less than you had hoped for and understanding how hard I try every day to do my best and acknowledge that I am pretty sure most others do too.  Maybe they don't succeed or even fail miserably, but I don't doubt that most people are kind and good and when they go to bed at night they ponder the mistakes of the day and try their best not to repeat them tomorrow.  Most of us hardly need others pointing out our failures, thanks though, I've got that covered all by myself.

I guess if I could wish for anything this coming year it's forgiveness.  I know living with this illness I have a sensitive barometer for happiness and sadness.  When those that I love are in pain or suffering I find it difficult to shield myself from those ills.  I have learned again and again that I have no place for ill will, it brings me down more than it ever would those that it is directed at, and perhaps those that we want to direct our anger and disappointment in if we could dig a bit deeper and see through a lens of compassion we could empower someone rather than tear them down further.  When kindness isn't necessarily earned I believe that is the time when it is most necessary.

May you get everything you need in 2013 and perhaps if you are lucky everything you want.

teaspoon of sugar...

 My sister watched Mary Poppins so many times that our VCR tape finally broke; I couldn't have been more relieved.  Especially the depressing scene with the feed the bird song even as a young child I saw the pain in that song.  However, wouldn't it be nice if a teaspoon of sugar would solve all of our problems.  Perhaps it makes the medicine go down, if only medicine could fix all of our ills.

dancing penguins...

This holiday has been leaps and bounds of progress but like Mary Poppins it felt a bit like jumping into the chalk drawings that offer a temporary escape and then reality comes back and you realize you have made strides but there is a long way to go.  I am so grateful that this year I was so much better than last, but it is always hard when all of a sudden you can't really get out of bed and you close your eyes and wish you could jump through sidewalk drawings in the street and stay a bit longer.  Or just take that big carpet bag with everything you needed and fly away.

jumping

Proud...

The Holidays are a super-sized version of where you are at in your life sometimes.  And sometimes all it takes is four little words to make it all worth it..."I am proud of you..." okay, I guess that was five!  I have an amazing family and support group, and that has all expanded since I decided to get out from under the "shame" or "insecurities" of this illness and began to start living truthfully.  Living honestly rather than pretending I was my old self and masquerading my way throughout the day.  It's scary and hard to come to terms with this new life, but the energy it was taking to pretend it didn't exist I have now found was even more difficult.

I went to my Aunt and Uncle's for dinner this evening, and last year a complicated stressful situation of dodging foods I couldn't eat was a simple fix...I brought my own food...and you know what...no one cared!  That is the thing about our own lives, we tend to expand the impact of what we are dealing with in our mind, and when we step back and are honest about what our limitations are and what our fears or anxieties are you have begun to strip away a bit of the power those little voices of doubt have over you.

This year, I changed my flight at the last minute due to my health being in a poor place on Thursday and a blizzard that was impacting our airport.  I then preceded to get a treatment on both Friday and because my doctor is so dedicated and wanted to make sure I left as strong as possible on Saturday.  From the treatment I raced home, finished packing, made some food and got to the airport.  At the airport I found someone to help me carry some of my things and Sophie and I did the oh so fun security etc...I got in to Milwaukee at 12 am...and headed home.  And for the past three days since I have been home I hosted at my house twice and went to my parents and my aunt and uncle's .... I participated in Christmas.  While I was at my parent's house my 4 year old niece spontaneously came up to me while I was alone in our den, and she climbed on my lap, wrapped her arms around me and said, "Heather, I missed you when you were in Arizona." And it broke my heart a bit; yet made the sacrifice all the more worth it.  Because I was present in that moment, and my treatments though took away time give me quality.

While at our big family gathering one of my Uncles came up to me and said those four words..."I am proud of you..." "I am proud of you for being here..." and for all of you CFS'ers or anyone that sometimes feels like whatever they are going through no one is paying attention...there is no greater gift one can give than that of acknowledgement.

Somehow when we get older it seems that those words that we hear so much as a child...I am proud of you...begin to disappear.  You are expected to do things, behave a certain way and be an "adult."  However, maybe that is where a bit of our compassion gets lost without even knowing it and being told it tonight, I will remember once again...words can hurt and words can heal.

Happy Holidays. Photo courtesy of the 4 year old! 

December 24th 2012

Addendum...
I logged on to AOL and saw this clip and it was exactly what I was trying to say...but came from Nobel Laureate and Holocaust survivor Elie Weisel....Friendship is a Religion from his new book Open Heart

Sophia

You writing about me???

I was a little scared two nights ago.  It was well after midnight, I hadn't been able to sleep, not been feeling well and have trepidation as always if I will head out of Phoenix feeling better than I came.  And then someone said to me, "where is Sophie?" and I said that she's "lying right up against my legs..." and suddenly I didn't feel so overwhelmed anymore.  I get more comments than anything regarding this loveable and very intuitive dog.  For example, in the mornings if I am not feeling well, even if I go downstairs to get juice she will not follow me.  When I am in bed and in a bad place and someone comes to help and take her outside I need to physically remove her because she won't leave.  And now, she has begun to brighten up the days at my appointments, often accompanying me to them.

I said I was concerned about being in Phoenix alone for the first time, well alone couldn't have been further from the truth.  I have an amazing group of people helping me and though difficult to have others constantly in your space; I have learned to find a way to become more comfortable feeling sick while others are around me.  I am lucky that I am leaving on a high note, this MORNING, I actually ran an errand before my appointment.  I can not tell you how monumental that is, normally getting out of the house at 1pm for my 1:30 pm appointment takes everything in me.  I am grateful after many ups and downs I appear to be returning to snowy Milwaukee for the Holidays on an up swing.

Here is some pics for all you Sophie lovers of my baby right by my side. xo H.

Looking for Dr. D

Hmm...still waiting

Hanging While I Rest

Laying Down keeping me company with IV

I will not move...

Yep I am sitting as close as possible...know we've had a long day!

morning

I manage to get out of bed this morning and take Sophie outside before Kristine gets here to help me.  I get down the stairs which feels like a monumental accomplishment.  My body hurts and feels weak.  We walk outside to the crisp morning air that smells oddly of sweet deteregent and it takes me by surprise.  Across the driveway as Sophie avoids the deep grooves formed by the tile pattern like the little dog from As Good As it Gets.  We continue past the mailboxes, cross the main circular drive and get to the grass.  I am robotic in getting this done my brain focused only on getting back inside; then I look up.  Across the way out of an identical looking condo is a woman my age bouncing towards her car that is on the main drive.  Giving the impression that she forgot something and just ran in and out to continue on with her morning and doesn't want to be late.  Her hair is dark brown, pulled back but clearly washed and blown dried, from a distance make-up deftly applied.  She is dressed smartly and well put together, for this cool Phoenix morning.  A pretty Merlot colored sweater, skinny jeans and black boots.  She is confident in her stride back to the waiting vehicle...a purpose.  I glance at her briefly and between her movements, her build, her style, I look at her with envy and think to myself...that use to be you.  I breathe that thought in and mechanically, carefully focused Sophie and I turn back towards the house and somehow make it back up the stairs.

hmm...

think we can climb this?

Winter in the Desert

It rained last night.  Poured.  It smelled like home.  This has always been my favorite time of the year in Phoenix, the Winter.  It is crisp and the air is no longer heavy and hot, and once in a while you get these clouds.  We have the same ones in Wisconsin, but here you can see them for miles.  So often the sameness of the days when I lived here year round got to me, just give me a few dark days!  This is my view on the way to the doctor, I am so lucky that I don't have to fight Phoenix traffic.  I am cuddled between mountains and every day despite how I am feeling, I never forget to enjoy the views.  Today was a bonus because there were clouds.

An endless sea of clouds....

Amazing Shadows

Intersection of Hope and Faith...

When the world says, "Give Up" 

Hope whispers, "Try it one more time"

Author Unknown

Often the world is shouting at you not to give up but all you hear is the sound of your own voice.   That  voice coming from a place of doubt and fear daring you to give in and lie down.  In these moments, which there have been many, I have begun to better rely on the faith that others have in me.  

"Faith is simply the substance of things hoped for, the evidence of things..."
www.upwardaction.com

When I begin to think this is all not worth it, and I can not do this another day, I hear those whispers to just try one more time.  If it's not a whisper, it's an action.  A helping hand, a text, a note, encouragement, I could go on and on at how blessed I have been for the faith and commitment of those around me.  It is when we begin to have as much faith in ourselves as those that love us, when we look in the mirror and see through the eyes of love rather than doubt and judgement, that we can truly begin to heal.  And if hope doesn't get me to my desired destination; I have a new found faith that I will be okay. 

Unconditional Love

There is no more generous gift one can give than their faith in you...I am learning that perhaps love is the bridge between hope and faith. Nothing more, nothing less. Faith allows you to loosen the death grip on hope and the security to leap and know that you will always have a soft place to land. To all my bridges out there...thank you.

John Hiat...Have a Little Faith in Me

Dependency

If we are keeping score, considering the last eight years my health has not been good, it is safe to say the infections have been winning.  In fact it kind of has been a blow out.  Yesterday, as I kept my eyes tightly closed while my blood treatment was happening, at the end I  looked and stared at the remnants that remain.  And it reminds me of what I am fighting...these are the little nasty cohabitants that steal my nutrients, fight for my oxygen, keep me from building muscle mass, irritate my nervous system; they have in fact been ruling my body.  The fact is my treamtents are simple...get clean blood.  The post treatment reactions I have though miserable is the indication that my body is responding to this clean blood and deciding it's about time to even the playing field and start fighting back...so let me introduce you...

Epstein Barr Virus

This illness often feels vauge and misunderstood...but when I see my blood come out and look at all that is getting in my way...it helps to see to believe...I am sick...I am tired...I am emotionally spent and I am dying to heal.  I will do whatever it takes...whatever you tell me to do...I will follow.  They are quite beautiful actually, amazing really, but I am oh so tired of them.  We have co-existed long enough, and they are inhospitable roommates.  I am ready for their lease to expire, need not get your deposit back, no 30 day notice, you are disrupting the peace, so please find the exit and keep on walking.
For those just following...this is a simple explanation of my treatment

Cytomeglovirus - CMV

I am so ready to say good bye to all of you becuase the worst part of this illness is being dependent upon people.  You figure you graduate from college, work, then go back to naturopathic medical school and you will have your independence.  Then this illness strikes and you need to call somoene to come over in the morning because you can't get out of bed to take your dog outside.  You can't get downstairs to eat.  I hate this illness, I hate you EBV, CMV, Staph, Strep and Candida...I hate you for what you steal from me every single day.  I have said before to someone, I hope you are never forced to be dependent on someone, because when you are no matter how hard people try they begin to feel that they have a little bit of an edge over you.  The loss of independence and trying not to be bitter at those that help you - is emotionally draining.  I said to my best friend out here in Phonix, who has been my AMAZING nurse; "damn you must be tired of this illness too"...and she laughed and said sure at times...but then we start over tomorrow.  Yes we do, we start over tomorrow.  And tomorrow we may win.

Strep

Candida

Staph

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.