Monopoly...

I felt like miraculously Saturday and Sunday I was blessed with the "Get out of Jail Free" card.  I flew from Phoenix arriving in Milwaukee at midnight to surprise my best friend who had her third baby on Tuesday.  The bundle of preciousness was home from the hospital on Valentine's Day, and I got to see her at less than a week old.  So instead of "talking" because I am frankly too tired to form decent sentences, thought it best to show a visual of those two days...none of this would have been possible a year ago.  But that get out of free is not forever, there is always a wrong roll of the dice that puts you back.  Despite the emotionally meltdown of the intense fatigue, body aches, foggy head that arrived on Monday...I picked myself up and relished in the fact that for two days, while they were not with out speed bumps or filled with perfection, I felt normal and it was extraordinary.

Another Flight

Baby Holly 4 days old

Kate, Holly's big sister's basketball game
Not the whole game..the 6 second running through the dome!

4 points, 2 assists, 2 rebounds...

My neice's tennis lesson

This is a "normal" weekend for my friends and family, one I often just hear about or attend with such effort "I" am not really even present, just a body showing up trying to make it until the end.  These every day events make up moments, and these moments make up a beautiful life...two days...the normal being anything but normal.

Love

My favorite day of the year.  For me it's always been a day of hope.  

As a friend of mine said, a "day celebrating love, who could argue?" 

Not me!  xo xo HD

Humility is Strength

Beautiful Back Home...It's a long and winding road...

Asking and needing help is a humbling experience.  My doctor once said to me you are the most competent sick person I know...and as I read blogs and articles of others with this illness it is the great irony; extremely competent successful people stuck in a body that obeys no rules, follows no logical path and has you guessing at every turn.  Unpredictable.  I need predictable to feel safe.  But more than anything I want to be happy and strong.  And if I can't obtain strength physically, I need to work harder finding mental strength, which is difficult with an illness that often makes my pretty smart brain have difficulty reading a complex novel...thus I ended up reading Fifty Shades of Boring.  No disrespect E.L. James, but you are smarter than your books.  But you are smarter than all for figuring out how to sell books.  But I digress, the point is I spend a lot of time beating myself up for this illness and am I doing the right thing, the right treatments, and my mind can go off into a million tangents of possible solutions.  The thing is you can't look at a chronic illness day by day or you will go crazy.  I need to start looking at the totality of the illness.  And these are the facts...

1. Three years ago I barely got out of bed.
2. Two years ago I started treatments that only included hydro-therpy because I was too sick to handle anything else.
3. Last year I committed to much longer time frame in Phoenix and when I came home I played tennis
4. This year I am in Phoenix mostly by myself, driving myself to appointments when I can, not giving a damn how many veins are poked, blood is taken, stronger...I am stronger...despite Saturday not being able to move..that was Saturday.

So like all of us there are times to beat ourselves up for not doing our best and times to look at our lives in a totality and decide, no I have made progress and instead pick ourselves up.  And if we can't pick ourselves up, humbly ask for help.  You will be surprised what happens when you begin to reach out and say I can't do this alone, I need your help, I need your love, I need your shoulders.  People will surprise you and you will begin to surprise yourself.

Pay it Forward...

In Memory of Julie Forward DeMay
Can you hear us?
Photo from Julie's Blog Dated January 16th

I scrolled back to find when I wrote my initial, "thank you" to Julie.  It was almost a year ago - February 4, 2012.  Since I honestly had no idea what "tagging" posts was when I started this I know I have spoken of what Julie and her blog Cell War Notebooks has meant to me, but can not find them.  But she inspired me and gave me courage to take this blog journey when I didn't have it until I read her words..."I promise to use my gifts..."  Today is a blog-a-thon, and to be honest I am a bit ashamed of myself because I saw the FB information, but missed the "blog-a-thon" memo somewhere in there...so under the wire I am getting this in...I have a feeling Julie might actually appreciate that or relate to that feeling.

I don't like writing this...I am someone removed from the daily grief that wraps itself around loved ones where  life without Julie has reminders at every turn and yet they find away to proceed.  That invisible sheath that can at times suffocate you, knowing you must keep living your life but you are seeing it through blurry eyes and a broken heart.  Sometimes that sheath feels like the weight of the world and it's fabric is too dark to see through and you wonder how are you going to make it as it pulls you down?  And then there are the moments when it feels like a the quilt that Julie received, keeping you safe.  Or the best when it feels like an invisible hug, her arms wrapped around you when you get a little sign that you have no doubt that she is right there beside you.  At that moment you are so grateful for the time you had and you smile and you laugh at memories and then those same memories break your heart all over again.  You are only smiling and laughing because that awful phrase that you cursed..."time will heal" has started to show itself.  And you don't want time to heal, you don't want time to move forward, you want to go back in time where you can find some magic that will change this course of events.  Time may heal, but life will never be the same.  And you find a way to live a new life when the person you treasured with all your heart was taken too soon.

I do not like writing this post.  I never shared with Julie that I had a five year battle with high grade pre-cancerous cervical dysplasia.  I felt guilty.  Just like Julie I had never missed a Pap smear and went from no problems to pre-cancer all at once.  I towed the line for many years, LEEP procedure, biopsies, Paps every three months...how did I get lucky?

I do not like writing this post.  Last week I had one of the most cherished moments I can remember.  Luka, Julie's daughter wrote me a letter.  And when I opened it and read the sweet words of a nine year old I couldn't take it.  I wasn't ever suppose to get a letter from Julie's daughter, I am the receiver because Julie is gone.  I wouldn't have known Luka if Julie hadn't gotten cancer.  So as I am so joyful and grateful that my correspondence mattered I cursed the reality of why it began.  And looked up to the stars and once again, said thank you and I say I am sorry.

So I ask fellow bloggers, even if you miss the deadline, please share her story.  I ask those that read this do more than post it on FB but purchase her blog that became a book and continues her legacy as a writer and as a mother caring for her family after she is gone.  I ask you to pass that book to someone else and have them do the same.  Julie was a force to be reckoned with, let us show her we can take her lead and get her story told.

Cell War Notebooks on Amazon
Cell War Notebooks on Facebook
National Cervical Cancer Coalition

My First Thank You to Julie - 2/14/2012

Stopped

My legs don't want to carry me so I will find another way.  But I stopped and smelled my roses and for today that will be enough.

Stand up straight and realize who you are, that you tower over your circumstances. You are a child of God. Stand up straight. Maya Angelou...

You are a child of someone's...of this Universe...which means you are loved and that is always enough.

Experiment

I lied for years.  For years I pretended I felt one thousand times better than I actually did.  I would be at a party and seeing spots in front of my eyes, light headed, and carry on a conversation with enamored enthusiasm all while the majority of my brain was focused on standing up right.  I didn't fight hard enough with the doctor that accused me of being anorexic...I fed into "if we don't understand it, then it's in YOUR head." Which the translation when you are feeling that ill becomes.."It is ALL my FAULT."

And in the past few posts that I have on more than one occasion answered the phone and then immediately replied, "no I am not suicidal..." I realized the pendulum has now swung in the opposite direction.  My posts, are not as much about how crappy it is to feel sick all the time, although they may to the quick observer seem to scream that; in my head it is really more about finding away to "succeed" when this is not what you thought you would be fighting for.  Illness and taking supplements and handling treatments, taking your dog outside, making and cleaning up your own dinner, these have all now become the ways you measure the success of the day.  And at the end of a "normal" day, you stop and think to yourself...really? really you have got be fucking kidding me...this is what it feels like to "win"?

No, not MY LIFE...this was going to be MY life..finish naturopathic medical school, head back to Milwaukee, live in anywhere looking at the Lake, start a holistic practice for the impoverished, go back to weekend Law School at Marquette, spend time working for the Innocence Project...I was going to have BIG WINS....so to to wrap your head around being excited that on Wednesday...you drove yourself to the doctor, had a difficult blood treatment that needed three veins, got in the car yourself, went to the grocery store, let Sophie out, fed Sophie, made yourself dinner, kind of cleaned up that dinner, and took your dog out again...that was a MASSIVE WIN.  Three years ago, I couldn't even get a blood treatment I was too weak.  After that when I did it was once maybe every other week, then it was getting it but sucking down sugar and food and turning my ipod to LOUD to deal with it, so yes...I have come a long way...but it is just so damn hard to wrap your head around that win.

To measure basic daily events as success.  So when it appears I am complaining about being sick, it's not that, it's coming to terms with this new success...what I am fighting for every day...to find the joy to find the happiness to find the feeling of accomplishment in a life derailed by a mystery illness, an unconventional treatment and years of being told...you are NOT sick...

Butterflies and Rainbows

So today, besides my doctor, I am going to do a little experiment...when anyone asks how I am doing I am going to lie again.  I have vented and explained and outlined for those that really know me or care to know what it is really like to have "chronic fatigue".  I have a feeling they get it now...and those who don't never will..so I am going back to lying for a bit and see what happens.  Perhaps if nothing else it is a bit of a break I need.  And back to un-editing this blog for a bit, and rambling more than necessary and well - Fuck Perfect.  And I'm feeling fine today - thanks for asking.  It's all butterflies and rainbows...

Gray skies at night...

My grandpa used to say, "Gray skies at night sailor's delight; pink sky in morning sailors take warning."  Tonight there were gray skies at night...a beautiful gray night to help with the grey day.  So I am really tired, because I was lying down and all of a sudden it came to me, the phrase is "pink skies at night sailor's delight, pink skies in morning sailors take warning..." oh well gray works for me...

january 

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