Easy...

August 1st, September 3rd and September 13th 2013 three days, three amazing days.  My old definition of an amazing day looks so far from what is now amazing I ask myself which version is truly the blessing?  Kind of one of those "things I wish I would have done before I died" type lists people tend to share...the things is with a chronic illness those "little stop and smell the roses things, well you stop.  I would love to say the simple things that get magnified are the biggest blessings, until the trade off for noticing these things is trading in your independent life for a dependent one.  I wrote this blog a few days ago and wanted to add some pics and look it over, and then yesterday happened and I read this and feel like taking the computer and chucking it across the wall and watch it shatter into pieces to match my despair last night.  However, I will "soldier on"...which that term popped into my head after reading this fabulous post by My World...  So here we go...back to the original post and tomorrow will catch you up to the reason for the Apple hitting the wall.

Amazing awe inspiring days before my health declined insisted of something "worthy" of such a title, a great concert, a fabulous party or a city or country I had never experienced and may never again.  August 1st, September 3rd and September 13th were amazing in their simplicity of an extraordinary ordinary day that had an ease that I so rarely am granted.

This illness as I have at nauseam repeated and have read over and over from other sufferers lies in the disbelief of what is really even going on.  I also notice that we struggle constantly with explaining what this illness feel like and I realized last week after the 13th came and went and the 14th landed me crashed in bed it can be described as the reverse of the beginning of a cold or flu.  Imagine when you feel a cold or flu coming on; first your head gets a bit foggy, your brain doesn't feel quite "on" and your body just isn't yourself.  Then perhaps it gets worse, and the simplest of tasks get overwhelming, so you hydrate, maybe take a few Advil and then slosh through another day.  Finally, you decide that this little invader has become too much to handle and you succumb to bed.  You may be a bit crabby than normal or needier, more sensitive of mind when the body hurts.  So you watch some movies lie around and then begin to move to the other side of the bell curve - recovery.  And all of a sudden, without much warning as a switch has been turned off you look around and take a deep breathe and you feel like your old self again.  That is the course of an acute illness, this illness takes all those feelings and you live with them every day and once in awhile like watching a movie backwards you are granted to Easyville.

August 1st and  September 3rd and 13th for me was a first class ticket to that magical land.  That ill feeling is normal and the reverse switch went off I felt like my really "old" self again.  Everyday stuff was just that, everyday stuff.  Easy.  That's the best way I can put it, everything was just simple.  Instead of swimming against the current without waking or doing anything differently the current changed and I was floating down the lazy river.

Seriously she would do better than Bethany...no offense Bethany

The most amazing best part of September 13th was the ease of heading down to my BFF's place of work.  The day prior it just slipped out of my mouth, "why don't I bring you dinner at the station?"  Even as the words came out my head was shocked that I even suggested that.  It meant driving a bit further than I have in months.  Entering the station where once behind the locked doors little magnetic security doors (which normally gets me tense) are at every turn.  The traffic which was increased by construction and a Brewer's game.  The normal list of hurdles to cross is so long they are hard to verbalize those were the obvious ones and as each one was jumped over I was truly a track star, clearing them with ease.

Yep the "oversized" not my most flattering

The worst thing about the entire day was that when we took some pics I realized my favorite "Mindy" sweatshirt made me look about 15 pounds heavier than I am!  Oh my goodness that was the worst part of the day!  My VANTIY the WORSE PART OF THE DAY...that is f'ing FANTASTIC!!!

The next day the spell vanished but I had these amazing days, three amazing days.  My doctor said she has seen this before with her chronic illness patients, that you begin to have these days so good so different than normal that you feel you dreamt it up.

I often feel like this whole thing is a altered universe dream and I am going to wake up and a version of that show "This is your Life" with some 70's game show guy in a bad tux will appear and in front of me lies...gift certificates to all my favorite restaurants that I bet have been missing me because oh have I missed them.  I use to be Queen of Take Out and Restaurants no one takes out from.  Many Bartenders in Phoenix and Milwaukee knew me not for my drink, but for my five star restaurant orders served in to containers.  Like a long lost friend that finally returned, Houston's, Bartalotta's oh have you been missed.

Then there would be this buffet of all the foods that I use to love that have been taken: apples, pears, nectarines, peas, carrots, potatoes - mashed, au gratin, baked, double baked, avocados, nuts, bananas - okay you can keep the bananas...

The next table has plane tickets to all my favorite places that I dared not dream I would visit again and some new places to discover. It just goes on and on of all the amazing things I miss and push deep down and make a conscious effort that missing is just wasted energy.  But then at the end would also be a little video of all the absolutely ordinary extraordinary days that maybe no one around me even noticed how much they filled me up.  Noticing the extraordinary in the ordinary like September 3rd 2013 being well enough to watch my niece head off to her own amazing adventure - kindergarten.

joy

And I may look back at the smorgasbord of things that I desperately have missed or more importantly missed the easiest of their attainability but then I would look at myself at 8:15 am holding a cup of coffee and giving my niece that big hug and the deliciousness of it that filled my heart not only because of the excitement of her new adventure but because I was able to make it and that buffet behind me doesn't feel so powerful anymore.

I still feel strongly that I never needed an illness to show my the specialness of moments or the joy in the everyday, but there is no way to deny how much illness heightens the intensity of the every day when the every day that normally is so hard takes it's grip off an gives you some moments of ease rather than dis-ease.

I have returned to Phoenix with additional protocols that we are trying in hopes of breaking the glass ceiling towards further progress.  I am hopeful and I am tired oh so very tired and then I count my blessings and they go much deeper than August 1st, September 3rd and September 13th and I am humbled by this journey and so grateful for all that have chosen to join me.

Enjoy...David Wilcox singing You Make it Look Easy

Made it

Falling Asleep

Last night as my head hit the pillow at 9:30pm all I thought to myself was, "you made it."  As simple as that, the morning that found yourself so tired you shook, so hungry you were nauseous, so weak you had no idea how you would get through the day, you did.  I even was able to modify the back to school shopping with my friends daughter to turn into dinner at my house, movie and what better idea than to introduce and 8 year old to the joys of online shopping.  My mom had made some pasta with meat sauce and I had broccoli and luckily some cheese to add to the top for Kate.  Kate was chit chatting and asked me if I when I was little did I have names picked out for children I might have one day.  I thought about it and said, "no, actually I never did that...maybe that was a clue that I really never was going to have children." She proceeded to tell me that she wanted three girls, named, Hope, Faith and Skylar, I commented those were very good names.  As I pulled her dinner out of the microwave, I turned to her and said, "well, I can feed a child guess I wouldn't have been all that bad as a parent." She laughed, one of the few 8 year olds I know that would get the sarcasm.

We proceeded to eat and select a movie, I was vetoed by the 1972 Rescuers and we ordered Epic.  Then I made one of those oh so helpful brownie boxes and we "shopped."  Her dad and brother and baby sister came over about an hour and a half later and we finished the movie and he drove her home. As they left, I cleaned up the kitchen, took a shower, and got into bed and those words ran through my mind like a ticker tape...you made it.  I also felt an odd sense of belonging, thinking of how many other people were going to bed with the exact same thought.

I was trying to find a good "sleeping" photo and googled "head pillow"
and found this...made me laugh...seriously...

Molehill out of a Mountain

I have this thing that I have mentioned before that I often get commonly used phrases mixed up.  Not only that but I have been known to correct someone when they have correctly said such a phrase so convinced by my incorrectness.  But I digress, it has been hard for me to write lately.  There is this great analogy about the "Spoon Theory" and if I am not too tired I will google it and insert it, and I had this whole story in my head to relate this "Spoon Theory" to the irony that I was unwillingly the  receiver of many decorative spoons throughout my childhood because I mistakenly decided to "collect" them from all the states I had traveled, which brought forth my grandma deciding that I should "collect" one from every place she had begun to travel.  Needless to say I ended up with a whole lot of spoons from a whole lot of places I had never been while my sister got some actual cool item from such place.  What I wouldn't do for a few extra of those spoons now, because all I feel like I am doing is "paying Peter to buy Paul" or seriously what is that phrase, I'm not trying to be ironic here for the sake of writing..."rob Peter to pay Paul...? is that it?  Well, that's the gist, I need more spoons....and not this one...thanks Brooke.

The Spoon Theory

I have found with this illness that in the beginning I fought so fiercely I unwillingly gave it more power than it deserved.  And this is my point, sometimes you need to make a mole hill out of a mountain or you will never make it to the top.  It is so easy to have this illness take over everything about me, but my life must be more than this illness.  Sure, would I do anything to go back to the old way, but that is not an option.  Much like the stages of grief you begin accepting and that does not mean losing hope, it just means not constantly mourning what use to be.  The person who helps me here in Wisconsin, the same person who brought me all the boxes of brownies so I wouldn't run out, asked me if I ever get bored?

And I thought about it, because on one hand I realized what an obvious question it was, and on the other hand how absurd.  I answered the best I could, "that is a healthy person question."  Yes, I use to not really get bored, I use to get frustrated or lust after all the things I could be doing rather than sitting here in my house like some sort of criminal on house arrest.  I use to think I was bored, but really I was just day dreaming and I found that took me to a very dark and lonely bitter place.

It is how I realized that yes this illness is overwhelming and exhausting and mentally challenging, but if it becomes everything, if I choose to make it bigger than it already is then I will stay in that dark and lonely bitter place.  I told a friend about an example.  My mom and I go to the same nail salon to get our toes done, we only go on the day when both Tina and Rebekah work.  I go to Tina, my mom Rebekah it happened by chance the first time and three years later it's the way it has stayed.  I don't get my toes done unless it's Tina, and this is why...The last time we went was about a month ago right after I returned from Phoenix.  I didn't feel well but I thought I could push it and seriously, it's just sitting there letting someone paint your toes.  But when we walked inside it was a slight bit warm, enough that I asked if they could turn the air down.  Then we sat in our booth and I could really tell I was beginning to feel light headed and uncomfortable.  A few years ago I would have fought with myself, the dialogue in my head would have gone something like this..."Don't be ridiculous, it's 50 minutes of someone massaging and painting your toe nails, get a grip.  Who cares that you are light headed and feel weak, how many people would be happy getting there toes done on a Wednesday afternoon instead of at work...honestly Heather toughen the F up, drink some Coke and smile and make small talk..." What I did four weeks ago was say, "Tina I really don't feel well..." and you know what she did..."Okay let's wrap this up and get you out of here..." no fuss no muss no sirens went off or bells pointing my direction.  No frenzy no rushing around like a code Blue just happened.  This is why I go to Tina, she gets it - it's toes, I didn't feel well, I leave and sit in the car and close my eyes.  Period.

Even a year ago had I done exactly the same thing a different dialogue would have taken place in the car as I sat there waiting for my mom to finish.  That dialogue would have gone like this.."you knew you didn't feel up to it, why did you even try, I can't even go get my toes done without a major incident.."  It would be easy to continue down that path of self and illness frustration, and I still do it often, but then I catch myself and remind myself that the other way is so much easier - it is the simple truth.  It is the reality, I don't feel well I need to stop.  There are plenty of days and things I miss out on when it's fine by me to get in a good cry or see this illness as the Everest it can be, but there is equal if not more opportunities to turn this mountain into a mole hill...and maybe that's what the hell that phrase means in the first place...

get what you need...

What a sweet surprise!

How we Bloom

But friendship is the breathing rose, with sweets in every fold.
- Oliver Wendell Holmes

Roses and thorns are parts of the same plant. Somehow though, some people are concerned mainly about the roses. The rose is not on the plant for more than a week, but the thorns are there forever.
Roses are teaching that the beauty of life will bloom, once you have taught yourself the lessons given by living with the thorns.” 
― Grigoris Deoudis

THE TIME CAME WHEN THE RISK IT TOOK TO REMAIN TIGHT IN THE BUD BECAME MORE PAINFUL THAN THE RISK IT TOOK TO BLOOM'
― Anais Nin

August 1, 2013

Today was a perfect day.  That is a perfect day in this new normal.  It still had a bunch of barriers and obstacles, but I managed them, and I had a sense of peace.  Normally perfect days make me a bit nervous, I guess I wouldn't be an inherently anxious person if they didn't and there in lied the beauty of this perfectly not so perfect day.

I woke up and knew it was the last day of swim lessons and multiple times opened my eyes to think there is no way in hell I can get there.  And then this little voice said, just sit up.  That is how we will see, just sit up nothing more expected manage this moment.  So that is what I did, I sat up in bed and got my bearings and then there was the whisper...hydrate.  So I followed, I didn't question, I didn't try and process all the steps in between me and these "early" lessons to see my niece and nephew, I just followed.  Back in bed, juice with salt, hydrate and wait.  I kept glancing at the clock and saw the minutes tick by and I willed myself to not be defeated.  Get dressed, brush teeth.  Okay, I have no idea who this little voice is inside my head, but again I will follow.  And now as I glanced at the clock, it was inching towards 10 am and I knew I still had a number of steps to complete but I forced myself to go back to the baby steps.  I had made chocolate chip pancakes last night for diner...shh my niece thinks I had "vegetable pancakes" so I knew I had those I just needed some protein.  So with my stool by my side I sat and made the eggs, and the clock ticked closer to ten, I just breathed.  It takes 5 minutes to get there and if you only see one minute you have succeeded.  And then there was that calming voice that told me I already succeeded because I felt good enough to try.

I made it to the last ten minutes of her lesson and stayed for the next 30 of my nephews.  It was a perfect cool summer day, and I made the mistake of sitting in the sun of a minute which brought on an intense headache.  But I moved on.  I got home with groceries my mom stopped and got for me and felt dizzy and weak but not panicked.  This will pass.  Bed.  Bed, juice, a bit of coffee and wait.  So that's what I did.  As the day went on I was lucky enough to have a visitor and a hydro-therapy treatment.  I managed to clean the kitchen with my "left to right" technique.  I start at the left side and start doing what I can and if I make it all the way to the right mission accomplished.  Again, these tiny steps that competed a process.  I had the dinner that I made the other night and was lucky enough to be cleaned up by someone else.

Then was the decision, it was 5:30 pm, what I really wanted to do was go to the pool.  Lie in this crisp non humid summer air, read a book, maybe run into someone I know...normal I craved the perfection of normal.  This is where for any one with an illness it gets tricky, you have had a really good day is it worth it?  Will you pay the price if you push too far?  And I determined the price was worth it.  I got to the pool and texted a dear friend I see very rarely on the off chance she would decide this night was also too good to pass up; despite probably a busy day at work, making dinners, picking up children, all the "normal" tough stuff of a mother.  About a half hour passed and in she walks, still wearing "professional" attire with two children in tow.  As we hugged, I said "what a nice surprise, I just texted you..." and she said, "you did?"  I repeat, a perfect day.

This is what now fills me up, these are the random surprises I don't enjoy when I am in Phoenix.  This was a perfect day, and I may pay for it tomorrow and perhaps even the next day, but today I felt like I lived rather than got by and there is no greater gift than that.  This summer it may seem to the outside that I am not that much better because my activities have perhaps decreased, but the difference no one can see is that sense of peace and being present that has eluded me for years.  I have the ability on good days to actually feel present, not count down the minutes or seconds until I can take the plaster of paris mask off my face and get to bed, my body screaming that the sounds, the conversation, the sitting up is all too much.  I have been given moments of calm in this ever changing storm, and I am so grateful for every moment of it, it is the gift that this illness put on a silver platter - the awareness of what it feels like to be well.

August 1, 2013...hope served up on a tray and I took all I could.

What we Share

Maybe tomorrow will be the day I feel like writing out all the thoughts that are in my head...maybe tomorrow.  I got a text from my aunt today that i need to tweet or tumble so she can figure out how to follow me...and I replied perhaps I am a writer because I am moody, have a bit of a block and to be honest wonder half the time it even matters...yep must be a tempermental writer of some sorts.  But more importantly than how I identify with writing this story of mine I reminded myself that it has brought me a sense of peace in sharing this experience that I hadn't had before and it was time to get back on the horse.  It also leaves you feeling raw and exposed, but that mirrors how this illness makes me feel most of the time; so at least if I am writing it I have a sense of controlling the dialogue.

Most mornings before I open my eyes I wonder how I am going to do it again.  It's an unconscious thought that awakens me and as I lie there with my eyes closed I tell myself, "just like everyone else out there that wonders for different reasons how are they going to wake up and manage a day that at times feels like it has more obstacles than openings, just like everyone else."  And then I don't feel so alone.

Yesterday was a beautiful day that I spent most of in bed.  I was crabby and envious as my entire family was at a golf outing and it has now become the norm that there is no way I would attend.  I honestly was feeling a bit sorry for myself and then angry as hell that I dared to be so careless with all the blessings I have.  Then like a yo-yo I shifted again to thinking, if I didn't have a bad crabby day once in awhile then I actually must be crazy.

So as these conflicting emotions raged through my brain as I was drifting to sleep this vivid memory of thirteen years ago washed over me.  I was transported back to Phoenix in a classroom at ASU.  I had decided to join the local "Toastmasters" group trying to plan out my future after graduating from SCNM.  Yep those were the days of the type A personality, medical school wasn't enough, I needed to be prepared if I was going to spend my days post graduation speaking to groups on the knowledge I would soon gain.  I don't remember the man's name, but I could see him vividly in his remote control wheel chair, his slurred speech, his life interrupted.  What courage to join a speaking group when he was so debilitated and had to fight for the services he required.  He had been shot while sound asleep lying in his bedroom.  One of his roommates messed with a gun and it went through the wall and sliced through his spinal cord literally shattering his dreams.

He told me he remembered this lighting bolt state of confusion and pain and nothingness.  I drifted off to sleep trying to remember the rest of his story.  Wondering where he was now, what he was doing? Did he have the help he needed...yet I can't even remember his name.

My bed is my haven, I am lucky that when I don't feel well it seems to be the wall of protection I need from this cacophony of symptoms.  And I thought of this young man sound asleep in his own safe haven and the moment that all shattered.  So this morning when I thought to myself how... I realized just like yesterday and more easily than that young man you crossed paths with thirteen years ago.

Tonight I walked over to my sister's house and watched a movie with my niece and nephew before they headed to bed.  Then I snuggled in with my niece as we read Sofia the First and Ariel accompanied by her "pretend" cats because she can't have a real one as she reminded me because I am allergic.  As she nestled under the ballerina sheets and leaf mobile I thought again of this amazing safe haven. Not the place we call home, but the people that make us feel like home. As I attempted to  slipped out she turned to me and said she could feel me leave, so "don't leave until she is perfectly still...that means I'm sleeping."  So on the second attempt as she was perfectly still and appeared asleep as I slithered out, she turned to me with a wry smile said, "Gotcha"  And again my mind drifted to that young man now 13 years older and hoped for him he was blessed with these moments; these perfect little moments tucked into the same day you wondered how you were going to do it again.

 From the poem The Invitation by Oriah Mountain Dreamer

It doesn't interest me to know where you live or how much money you have. 

I want to know if you can get up after a night of grief and despair 

weary and bruised to the bone and do what needs to be done to feed the children.