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