Thursday, January 31, 2013

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 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 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

Wednesday, January 30, 2013


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.

Monday, January 28, 2013


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 to to wrap your head around being excited that on 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 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 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 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...

Thursday, January 24, 2013

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...






Grey is winning

I am just so tired of this new normal.  I am tired of trying my best and knowing that "winning" has a completely different definition with chronic illness.  We grow up playing games to win, we take tests and try and win an A or a percentile, and these days there has become a cottage industry of "winning" against an illness.  There are rubber bracelets and insanely long walks and ribbons all geared towards "winning" the war on fill in the blank.  And for some reason, I am tired of all this winning and losing because even those illnesses where winning is alive and losing is death there are massive shades of grey in between.

I don't think I will ever "win" this thing.  The last three years I have technically been winning...but I also have traded intense fatigue, can't get out of bed all day fatigue for these crazy weird food allergies. I miss restaurants.  Of course I can go in a restaurant, have my plate flagged or eat before I go...but I just miss things being easy.  But in life there is no such thing as easy, just trading problems.  I am sure there are people out there that would say, I will trade you CFS for my Stage 4 Melanoma..and I would run for the hills.  I get that, I know that, but this weird altered life I have that is segmented and focused on trying to get well from something with no cure, no winning, and seeing if you can be the one that out smarts it...well there are days it's just plain old.  It's days when I am so use to good-byes that they don't phase me anymore that I realize my normal is far from normal.

It's f'ing lonely.  And everyone has their lonely. Yesterday I watched black thick blood come out of my veins and thought well it's right there in front of you...and I got in the car and just cried.  I cried because this is not what I thought it was going to be and I have no idea how the story is going to play out.  Then I cried not for myself but for all those out there that have the same situation or worse everyday thinking this is not how I thought things would turn out and yet find away to make "this" better than what they thought.  Am I one of those people?  Am I one of those people that make "this" better...or sit and get covered in the quick sand I am trying so hard to dig out of?  That becomes the real problem that eats away at your head.  Which team am I on?  Am I the I will win within this new normal or will I lose.  Will I succumb to being less than the best version of myself because I didn't see this life that is in front of me coming?  Isn't this what all the bumper sticker quotes are for...days like these?  So like the Devil and Angel on either shoulder, what type of patient are you going to be?  


I guess I am both...I am gray and grey and perhaps the "a" is the fighter gray and the "e" is the lonely scared shade.  I love gray, it's my favorite color and one of the few words that has two acceptable spellings...the murkiness of it's shades transcends it's phrase and proves it by it's refusal to play by the rules of "correct" spelling.  So today grey seems to be winning, but gray is the ultimate tortoise and may get knocked down a bit here and there but ends up finding a way to win.  And if you can't win, you find a new way to define what winning is...that is what I am working on. Peace.

Thursday, January 17, 2013

small victories...

I just clipped my finger nails.  Yep, that's it.  That's all I got folks, but they have been driving me crazy for about a week and today this afternoon I finally had the energy to find the nail clippers and accomplish what feels like a monumental task.  This reactive airway disease thing is a real pain in the ass.  Just like the rest of my body, my lungs like to over react to an illness, so while I am improving little things make me even more tired than before.  So I didn't file, I didn't push down my cuticles, heck I didn't even put on some lotion...but today it's all about the small victories.  Sometimes that's all we have and it has to be enough.  My friend sent me this great quote that she heard in a yoga class..."just because we are struggling doesn't mean we are failing."  I hear that and feel it loud and clear; because I am struggling.  And until that quote and text I felt like I have been failing too, thinking I should be stronger, more positive, better - just a better version of what I am right now.  I am struggling, but with friends like that how could I possibly fail.

Monday, January 14, 2013


Anyone that can find my personality and optimism please contact...both are currently in hiding and doing a pretty good job of staying out of sight.  When you are sick it seems you are often rewarded for "being positive" but yet somedays you just don't feel like putting on the charade anymore.  I am tired.  I am sick and I am tired.  I miss my old life, I miss the ease of things, I miss not living in two places trying and trying to get better.  This will pass, always does, and I'm not trying for a pity party...just honesty.  I just sometimes get so close to the light at the end of this and then something just knocks you to your knees.  As always I am mindful of all that is good and true and brings me joy...but somedays you look back and see how long you have been fighting just to get to normal and it all feels a bit for not.  For some reason it's the food that has really gotten me down.  Perhaps because this flu has left me with such little appetite and I would just love some chicken noodle soup with potatoes and celery and carrots.  Or some applesauce or a grocery list of normalcy.  I guess that is what I am missing most, normalcy.

Like any grieving process somedays you are on top of it an others the losses just seem to pile as high as a crash on the freeway.  I've had too much time on my hands with not feeling well enough to really even watch tv so the days have ticked by second by second just waiting for something to give.  Then I feel guilty for not being stronger or happier or more all just seems too much sometimes.  And I look around me and thought I never thought it would take this long or get this bad.  I like to take a problem and find a solution and days like the past week I am out.  I am riding on hope and faith of others and realizing you don't always have to be the "up beat" one gave me a medal when I was anyways so for now I'm just going to keep waiting.

Friday, January 11, 2013


Most of us have default emotional's where you go when you are particularly vulnerable.  Mine is scared, always has been.  As a somewhat rational adult I can talk myself down, but sometimes it's not my head that goes there it's my body.  This flu has taking me skydiving to terrified-ville.  It's a bad cough and a bunch of days of a's getting better but the fatigue that has accompanied it is knocking me out.

I got an email from a friend yesterday and you know when happy things make you sad...well that's what happened.  She wrote a few of us b/c she had gone through some old boxes and found all these letters that we had written back and forth in our college days.  And it brought me back to that time of my life and I ached for that person so badly as my mind drifted to that time I no longer recognize myself.  I wrote back to her, that we are lucky that we can look back and realize we didn't waste a minute of our twenties...we lived in this crazy utopia and we never really took it for granted.  Or at least I didn't.

We can't re-create the past and most of us grow and expand, but everyone once in awhile these friends get together and re-live the old days...they drink too much stay out too late and laugh until their stomachs ache.  And the thing is I can't do it.  I can try and tag along for an hour or so but I can't eat the food anymore, can't drink anymore, and all the sweetness seems to be lost sometimes when you have to try so hard.  I am so tired of trying.

So today...I am going to stop.  Stop trying to be different to be better to be well.  I am just going to sit in this space and find a way to find some peace in it.  Because frankly, I'm out of ideas.

Fate found me wonderful friends...Love has kept them close

Wednesday, January 9, 2013


For years with this illness when I feel like I have hit bottom, I find there is another bottom waiting for me.  I have like most suffering from a chronic or acute illness played little mental games with myself; continually pulling a rabbit out of the hat and wondering where the hell did it come from?  I arrived two days ago in Phoenix while fighting the flu.  And as I am getting ready for the doctor today I am beginning to wonder if there are any furry friends left to help me find the strength that I just don't feel I have anymore.  So anyone with some ugly multi colored scarves up their sleeves or a spare hare...send them my way.

Friday, January 4, 2013



Sometimes you just have to watch everything implode.  You can try your hardest to be kind and thoughtful and giving.  You can try your hardest to be loving and encouraging and forgiving.  You can try your hardest to be compassionate and give the best advice you can to help others.  You can try and try and keep on trying and sometimes it just isn't good enough.  Or perhaps it is good enough but it doesn't matter anymore, it just doesn't matter.  And in these moments when you feel like you can't take it one more second the chaos that is around you and the lack of control you have over it; it's a good idea to just close your eyes and breathe.  That you can control and like taking hold of the suction at the dentist, it may not be enough, but it will get you through from this moment to the next.  And the next moment after that and after that and pretty soon this awful pit in your stomach may begin to diminish.  You can look out onto the water and realize you can control the actions of other's as much as you can control the tide, and no amount of trying is going to make a difference.


Then you will do the mantra that you do when you feel so lost you will find gratitude.  You will be thankful for all that you have and all that you have done.  You will close your eyes and know deep in your heart you did all you could with the most pure of intentions.  You will find peace in the silence instead of fear ringing in your ears.  You will find lessons and courage and hope and resilience.  You will continue to try your hardest.

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