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.