Tuesday, October 10, 2017

Canary in a Coal Mine

It has been almost exactly 2 years since my family hosted the screening of The Forgotten Plague by Ryan Prior.  Today, Unrest previously titled Canary in a Coal Mine has made its itunes, Vimeo, google play and Amazon debut...this roll out after an impressive run across the globe in theaters and winning an award at Sundance.  So please check out Unrest that link gives you all the info you will need. 

There is more to say, more to write, but to be honest I'm tired.  I am grateful to those warriors fighting everyday for advocacy and recognition so it can turn to funding and treatments.  Seems time is going to quickly and I am racing against it - like we all are in one way or another.  Thanks again everyone near and far and I've met along the way...we don't get the journey we always ask for we make the best out of the one in front of us - one step at a time, some days better than others.  

Tuesday, August 29, 2017


Perfection is a malady of the soul.


I wrote what is below the second quote the night of the eclipse and saved it not sure I would ever post it.  I often use this blog as a journal and this particular one I knew I may need it in the future.  I hadn't expected how quickly that future would be.  I wrote it to remind myself when days, plural, like this past weekend have come along to find some solace - not in other's experiences but my own.

I have said before I am very grateful I am not prone to nor ever suffered from clinical depression an insidious silent disease that also falls in the invisible category.  I have tried very hard to be mindful to the best of my ability to delineate between being sad about dealing with an illness that has paradoxically no answers or cure yet hundreds upon hundreds of possible treatment protocols versus what someone suffers from with clinical depression.  The madness that there are no protocols mainly due to lack of research because for so long no one was believed.  Thus we all are left to follow anecdotal patient based cures that can make one question everything they have tried and think they have never tried enough.  Often I am in the position of waxing and waining between a new normal of stability and say is this good enough to possibly risk a treatment that could take you back to days when you were immobile day after day?

This past weekend I had a glimpse into what clinical depression may feel like - for me it was a darkness and despair that I had not felt since I lost my grandfather at ten years old.   When I lost him without warning I felt as if I lost a part of my soul.  This weekend the grief felt familiar; a visceral pain.  It was consciously knowing something will give but having no power to make that change.  The scariest part for me was that I could not hear about anyone else's joy; which is something that normally comes quite effortlessly for me.  I could not hear their pain either but mostly their joy when I felt so much joy had been withheld from me.

This pain was not brought on by my illness, but like everything in my life the claustrophobic nature of this illness, lack of outlets, comfort food, a long walk, etc. magnified it to a breaking point.   It was a pain I knew I had to be with while others helplessly watched.  I knew there was no one that could bring me back except myself,  yet I was not sure I wanted to come back.  In some way I needed this pain, I could no longer continue to pretend that this life feels like enough yet I could not keep fighting other non existent battles that are pointless and trite.  The fight I normally have or the compassion to let things play out I wanted none of that…I needed to feel the pain to get to the other side.  This mental, emotional and physical pain deserved its space; what scared me was how long would it require.

On top of this was the cruel irony a mere two weeks ago I had said to my doctor I think I am on my way I can feel getting better only for the next day to collapse in epic fashion.  This past weekend it was the perfect storm, the water was too hot, the specific circumstances felt to mean and then like a bullet the last 8 years or more of this disease shot through me with a force that shattered me whole.

You know what I have learned the most about living with a chronic disease - is you WAIT.  You wait out the storm.  You hang on for the next second until it becomes the next minute until it becomes the next hour until it becomes the next day and you then do it all over again and wait for yourself to come home.  I'm not there yet, but I'm knocking at my front door.

Thank you all in advance…I write for myself and I write for anyone else out there living with this disease, another or feels misunderstood.  But mostly I'm trying to write in the spirit of the book I got in the mail today "The Subtle Art of Not Giving A F'ck, by Mark Manson.  As for Yates well if you get to the end of the story, like the Monster at the End of the book…I'll tell you why...

This week and a half my sailor's mouth has reached an all time high.  This illness has tested every last fiber of my patience.  I have been confused about treatment options and the added pain literally and figuratively of a compounded acute situation has left me in a dizzying array of insanity.  I reflect on how awful this week and a half has been and may continue to be for awhile;  yet on the flip side how absolutely hilarious it has been in its calamity.  The knock out drag out humor that has accompanied the frustration of inhabiting this vessel that seems to follow one rule; don't follow the rules.

It is like this illness is an epic bad road trip that has taken me through ditches and flat tires and a tank that only knows one level empty.  We have barely made it up mountains and careened through valleys and somehow I am still here.  I am still here and I am okay.  But I am here because of the people that have sat shotgun; oh wait wouldn't that be nice - but I'm not driving…so apparently I am still here in-spite of everyone being bat shit crazy behind the wheel!  This was not what I had envisioned when I hoped I would tackle a brave enough life to take the road less traveled; but it is the road I was given. I often would do anything to give it back and that is what brings me to tonight…the moment of grace.

There is an extraordinary part of this illness when you are not in the storm of survival or hit the wall of surrender; in these rare times of quiet and peace everything slips away and you are left with what is right in front of you; and tonight for as far as the eye could see all I saw were all the people that have stood next to me and picked me up again and again when I didn't think I could do this life another day.  Tonight I was graced with this  extraordinary feeling that often feels as rare as yesterday's eclipse and it's beauty and rarity takes your breathe away.  I currently feel like the historian of my own moment because I know it is fleeting, I know that the chaos will not magically disappear tomorrow and I need this recorded so I can look back and say you saw it...the clouds parted and like a scene in the movie where time stands still or a near death experience and your life flashes before you - it all flashed before me and I was left in my living room bathed in grace.  I was messaging three people simultaneously, my phone was ringing with one of my best friends and while I was writing this one I stopped to answer the call of another.  And it all was so clear, like the meditation I do with my friend Cara it was the glitter in the snow globe gracefully settling to the bottom and when it did all I had was clarity.

That clarity was an image of someone was holding out a silver platter and giving me a shot to take this illness back and as I reached for it I knew I could not take it.  Even if I could, I would not despite it being something I have wished again and again for...  In this moment tonight in every cell of my being I knew if I had the opportunity to accept that platter I had to give back all the relationships new and old in the form they are now and that is a sacrifice I wouldn't be willing to make.  I am certain of little, however there is no denying the certainty of the sliding doors of this new life changed the path of the people in it.  Does that mean all of my relationships are perfect, come on now this isn't a fairy tale and it would be boring as hell if they all were.  In this moment despite this beautiful silver platter a fingertip away I just could not grab ahold.  The oddity of this is it did not feel like a tease or a cruel joke, it was a chilling awareness in the depths of my being that the person holding that platter would need to walk away.

I can't explain how badly my intellect wanted to take it.  I imagined what it would be like to be able to take my nieces and nephew by myself for an adventure.  I was back in an instant staring at the Mediterranean's deep blue waters and radiant sky.  A thousand things flashed through my mind as I sat in silence at this mythical image and then sent them away.

To date this is by far the most humbling and awe inspiring feeling of empowerment from someone that more often than not feels powerless.  This dreamlike experience lasted perhaps a nano second maybe fifteen minutes...I have no idea time was suspended just as reality.  It was a moment where the air changed and a chill runs through you and then you snap back.  It certainly doesn't mean I would like to continue this pot hole filled road; but for a moment at least I didn't want to throw that platter in someone's face and say it's about time...

This illness has changed the dynamics of every single person in my life - not by choice but by reality. All illnesses are not an island, your illness careens through every person in your wake…and I have found for myself;  being the one afflicted it is also my responsibility to accept those changes.  I don't   alone own the grief, the sadness the heartache…everyone you love and that loves you shares in that and they will all deal with it not always the way you had hoped or desired but it is theirs too and you have to find a way to accept that, absorb that and make peace with it or I have found anger and resentment are your only rewards.

As I am attempting albeit quite clumsily to wrap up this post as clear as a bell Yates pops into my mind.  I am no literary scholar, embarrassed to say have never read Yates, yet after googling some quotes Yates and I seem to be on the same page right about now for the preface of this story, not in talent but in emotion.  So this one goes out to all the literary giants that would most likely be rolling their eyes at the pedestrian nature of a blog and something about that makes me laugh and feel small, not small as inferior but small in that eclipse kind of way - that for a moment we were all the moon.

Sunrise of the Eclipse

My mom and aunt with epic Eclipse Patience on the Cloudy Day

Thursday, August 3, 2017

The B in EG

Storm is brewing
Note: I had this in the draft pile for awhile, thought better to put it out there when the B in EG had gone quiet for awhile...

I'm an absolute raging bitch inside of my head right now…and not proud of myself also to my lucky care giver of the day my mom.  I would like to be angry at everyone and everything but really there is no one to be angry at except this god damn illness and it doesn't fight fair.  You can't yell at it without screaming profanities at yourself.  So what do you do and don't you dare say meditate unless you are the 15th reincarnation of the Dalai Lama.  Yell at your friends, nope that doesn't work as two of them wanted to come by today but you weren't well enough.  Yell at your doctors, the one that called in twice to check on you this week when you called because couldn't get over a bad hump.  Yell at whom…who the fuck is there to yell and scream and say I hate everything and everyone because yesterday this god for saken illness gave me 2 hours of freedom….2 hours where you and your mom headed to Nordstrom..where I was out in the real world like a real person that didn't look or act sick at all.  I had finally succumbed and used my walker.  I have had the walker for over a year…and I didn't bring it back to WI.  But my dad's friend was out in Phoenix and grabbed it for me and so there it has been in back of the Explorer that my dad graciously keeps in my driveway here despite I never drive.

See who the fuck do you yell at when you have parents like that?  That leave a 2 year old car for you and drive their old pick up truck "just in case" you drive.  So Nora (my Mom) and I had a normalish 2 hours…yes I had my walker but it was really just a nice accessory to rest my purse. Yes under the walker seat was a cooler packed with snacks like you do for a toddler.  Yes I had been in bed until 3pm when I even thought about this jaunt.  I tried on shoes…tennis shoes that is because I'm attempting a tread mill to see if I can walk for a few minutes a day inside and I no longer own a pair of tennis shoes. We then went all crazy and made it to EverEve a store just outside Nordstrom and in about 5 minutes flat I found a pair of jeans, jean shorts, and top.  Didn't try it on, needed to sit outside the store because I was getting warm.  But when we left our little excursion I felt about the same as when we started which was amazing.

I ate a half of sandwich and my parents went out to dinner.  And then things started to pile up.  I got too tired by the time I kept taking Sophie off the bed and back on and off again and outside and feeding her that I got hungry.  And I was almost sure I could make myself some eggs, but here's the thing where it's hard for me to make food..it's the brain power.  I started, sat on my stool in the kitchen and called it…so my parents had to come back from their house over here to help.  I thought I would try and be productive and peel a tangerine…and despite it looking perfectly fine from the outside and I am the queen of picky when it comes to the food I can eat I open it to find the most disgusting black mold that I thought was a large bug ever…I thru it in the sink and screamed just as my parents were walking in the door.  Yep that was it…back to bed.
Nope she's certainly not the B

So here we are today…the B in EG…I woke up and yesterday the good part of yesterday might as well all been a mean "gotcha"…ditching a bride at the alter, telling someone they won the lottery….okay I think I'm accidentally quoting and Alanis Morissette song…well that sums it up…but far worse than rain on your wedding day…. seriously if that is your biggest problem get a fucking life.  Yes see this B is strong in this one…. None of this feels ironic it feels cruel.  How to go from that yesterday to today my head felt like it couldn't process a thing, my legs felt heavy and numb and after I was in the shower my lungs tightened up…I got dressed, did my nebulizer all trying to get 7 minutes away for my nephew's birthday party.  My mom left at noon and came back to get me…but I couldn't eat the food she made…I snipped and snapped and pretty much was a nightmare to be around…she was the only one in the path of my wrath.  I was just so frustrated.  And people try and say it's okay - he didn't even notice it was so crazy the nerf war party.  But the thing is it does matter - it matters to ME.  And the fact that it starts to not matter; the continual doesn't matter because this is your new normal missing nearly everything is a hard pill to swallow...oh my goodness I did it again...Jagged Little Pill...I swear I haven't even listened to Alanis in years.  Okay now I'm laughing at myself..

Frustrated that I should be happy with a good few hours - but it's a few hours…do you know how long the days are.  I always say people think I have so much time on my hands but when everything takes so long waiting to feel well enough it often feels like I'm racing against time.  I am always out of time; because timing is everything and I need to wait it out to get to the point where I feel well enough and by that time often I've missed what I tried so hard to make.  Thus the B in EG comes out..and for those that have been in her lovely path all too often - thank you.

Wednesday, August 2, 2017


  1. I realized after the fact...I kept writing "heals" when I meant "heel" of a shoe..
    Thinking I will leave the grammatical error  and hope it's a Freudian Slip
    Got to love accidental irony

    I hadn't read a post from Jamison in awhile; whom unlike me writes more consistently.  Jamison was a focal part of the documentary The Forgotten Plague that my family and I proudly were the first to screen in Milwaukee, WI.  Ironically, I have never seen the part of the movie that Jamison was featured in as I began to feel quite ill in the theater and left to sit outside in the quiet for awhile and when I returned his segment had been finished.  But I heard many people after say how the visual of a man in such physical amazing shape was taken down was brutal to watch.  I also discussed with the filmmaker Ryan Prior how useful I found it to be that men prominently featured in the film, as this illness is often equated with the overwrought fragile female.  So then I began following Jamison's blog; Jamisonwrites.com.  I was impressed with Jamison's dedication to writing despite I know myself that often it is writing or doing.  Writing, takes energy and it's a balancing act for my personally to weigh the accomplishment of telling my story, does that story matter, is it worth the possible repercussions?  

    Yesterday when I still hadn't seen a post of Jamison's I began contemplating if Jamison was okay, had his health taken a turn for the worse or maybe he was just taking a break.  I've been simultaneously been emotionally struggling with living in a state of purgatory.  I have moments that are decent, and then an hour or so of actual real life and getting that taste of normalcy to then be taken away each morning when someone needs to come and make all my meals is a demoralizing feeling.  I've berated myself in my head that I must be doing something wrong, or I need to shift and try something else, or maybe I'm just depressed and don't care anymore.  It is an emotional roller coaster of a mind boggling insanity.  

    While my head is going a million miles an hour, I see that Jamison published a post.  Not just any post…he had seen the sky!!!! Two years, it had been two years since he made it outside.  And I smiled to myself because the same day after two years sitting in my closet, I wore my Millions Missing heals.  A few weeks ago a friend came by and she was one of the first to post something about #MillionsMissing with her shoes and I had these shoes in my closet for two years and had said to her when you visit this summer this is silly you can have these shoes…I still don't feel strong enough to wear them.  Then I tried them on and was like damn, I really do like these…so my mom ran out and we got a replacement set for Marci and laughed and I said alright..if another year goes by I'm giving them up.  Two weeks later - the same day Jamison saw the sky, I wore my heals.  

    See this is what this disease does to you, how can I get angry, frustrated despite my life not being close to what it was, I have never gone a day without seeing out a window.  I have gone days not stepping foot outside, but never weeks.  I have gone now three years not being able to make my own meals, but the heal day I heated up my own dinner, made it for dessert at my nephews birthday party and wore the heals that the thought of the energy of had alluded me for two years.  I wore these shoes for a few reasons, one they had been giving me the evil eye ever since Marci's visit.  Two, my brother-in-law's sister was going to be at the birthday dinner and she always rocks great shoes, so a little ode to her and three well I finally thought I could make it from the parking lot to the patio in them.  Progress, baby steps of progress.

    I had been listening on repeat to Stevie Nicks version of her song Gypsy for the Netflix series of the same name.  I delved deep into why and when she wrote it, and it's mostly about getting back to the time before she was famous and a tribute to her best friend she lost at the time and her world felt shattered.  As I listened over and over that's all I want sometimes to go back to being the Gypsy that I was before I left for Phoenix.  Living on the East side with a scarf over my lamp, a corner apartment that slanted like a ship, a walk in closet in the living room, a kitchen that was an accessory and had it's own door, when I didn't know how to make coffee had a window air conditioner and was in a city, a job and a life that I loved.  But most importantly I was in a body that I could rely upon.  That could run and run further, could eat and drink, that I took really good care of - I thought we had a bargain - apparently some virus best guess decided to come in and claim the life I loved.  And often feels it took the person that I was, that I loved.  

    So I need to dig a bit deeper and scold, aka gently remind myself that I am here - I am alive - and she remains; she just rocked a pair of heels and white shorts teetering between chic and a contestant on Miss America, but she emerged and I can only hope that she comes around again. Jamison saw the sky and I rocked my heals, we are the same disease our courses are unknown, our treatments a bunch of trial and errors, our lives renamed and reclaimed dancing between heaven and hell…living a purgatory of hope and a wish for what was...

To the gypsy that remains; 
faces freedom with a little fear… I have no fear only love

She is dancing away from you now, she was just a wish… just a wish
and her memory is all that is left of her now…you see that gypsy that I was...


Gypsy (worth a listen)

So I'm back to the velvet underground
Back to the floor that I love
To a room with some lace and paper flowers
Back to the gypsy that I was to the gypsy that I was

And it all comes down to you
Well you know that it does, well
Lightning strikes maybe once maybe twice
Oh and it lights up the night
And you see you're a gypsy
You see you're a gypsy

To the gypsy
That remains
She faces freedom
With a little fear
Well I have no fear
I have only love
And if I was a child
And the child was enough
Enough for me to love
Enough to love

She is dancing away from you now
She was just a wish
She was just a wish
And her memory is all that is left for you now
You see you're a gypsy
You see you're a gypsy

Lightning strikes
Maybe once maybe twice
And it all comes down to you
Oh oh well it all comes down to you
Lightning strikes
Maybe once maybe twice
I still see your bright eyes bright eyes
And I've always loved you
And it all comes down to you
It all comes down to you

Monday, June 12, 2017

Comfort Food.....

Cheryl Juech - This lovely badge of bravery and tulips were left on my doorsteps.  Coming from such a brave woman...humbled...grateful...and I look at it everyday.
I wanted to acknowledge to all of you that read, follow or share my blog I am so very grateful.  This current post went far better in my head but I will admit after a really bad week that I wrote it more to accomplish something...and thank you for hanging in there with me as it's eloquence is not of a standard I pre this illness I would "publish".  The pictures are the sweet kind things people do... The last two weeks I've been dangling from a cliff of sanity and I knew I had to write.  Write anything...something..have some control over the endless list of things I can't....

Sophia Dentice...this gem along with the book by the same name arrived in Phoenix this winter.  The book has fabulous music lists, an amazing story of perseverance and an unexpected story about the brother's amazing sister.

I use to be the person you loved to have at a dinner party...because I hated to cook and loved to eat.  I use to keep a revolving list in my head of my top 5 favorite meals.  The thing about the favorite meals most often as food does it's attached to the moment; hence the comfort is a combination of the people and the food.  So you need the two parts to get comfort food...the food and the people.  I could rattle off probably 50 favorite meals/dishes from homes or restaurants but a quick top 5 is no brainer...

1. Post France Thanksgiving Dinner.  I had returned from a winter break abroad in Nice, France.  The couple I stayed with, let's just saying cooking was not their forte.  The French pun was unintentional...anyways long story short I had to have "dinner" with them and they lived a bit far off the bus line to go dinner by myself and walk home and their dinners were pretty typical first year of college living on your own type meals.  Which was kind of okay...except for the restrictions that most people's refrigerators in France are about the size of a dorm refrigerator, so I really couldn't buy my own food - besides we weren't suppose too...and I was a rule follower. I didn't want to offend them by bringing my own food, and I was already clearly offending the one woman by even living with them and taking their bedroom.  I can't believe I can't remember their names...and in the era before email and facebook after I left we never had contact again.  So when I got back home to Wisconsin my friend Sandra prepared my favorite an entire Thanksgiving dinner.  Though I loved being in France, and perhaps under different living arrangements and bit older may have decided to stay awhile, as I whilst to go back now.  That meal was home...home in everything beautiful and wonderful being home means...

This fox was a gift from my first massage therapy client Kate Hart's husband after her quick and young passing from Gall Bladder Cancer.  Oddly I have misplaced this fox so many times and yet it reappears.  My 4 year old niece will move it for me to make sure I can see it or it can see me...which I find fascinating given she has no idea of its deep meaning to me.

2. Chithra and Neil's Indian Brunch.  I am not an exotic eater, never been a fan of spicy or unusual foods. Give me the down to earth basics.  The last place I lived before moving to Phoenix was this fabulous apartment that leaned to one side that had two entrance doors and my walk in closet in the living room.  I believe I owned maybe two pans, they were orange and heavy that my mom had bought me at TJ Maxx.  I don't think I ever used those pans.  I did not own a coffee pot. It was very "Carrie" pre Sex In The City minus $425 dollar shoes.  My neighbor across the hall was a student at the medical college and sometime into his 4th year his girlfriend, to become fiance to become married and then divorced....moved in across the hall.  I add the extra tidbits because they were from Phoenix and full circle when I first moved there for school they took my parents and I out to dinner....and then about a year later I ran into him with a very blond not his former wife on his side at the mall for a very uncomfortable ohhhh so a lot has happened in a year awkward moment.  Again, I digress...again the food leads to story.  So when his girlfriend arrived she was an amazing cook, and we didn't have air conditioning except one window unit so when she cooked she would open the second door of the apartment that entered the kitchen and I would open mine and chit chat with her while she was whipping up some amazing smelling food.  I would sit on my stool with my pristine kitchen as she explained that curry was not in fact a spice from a jar but a combination of spices.  She even had this fancy spice wheel...she tried to with no luck to teach me...again I was a consumer of other's creations and had little to no interest in the joys of cooking.  So I had been invited to a brunch party they had and don't have a clue of what I ate, just know it has forever stayed in the top 5.

Art by Taylor Rose (age 4)

3, 4 and 5....Yep I can wrap them all together in a big pretty bow....because they were cooked by the same fabulous friend.  Leah's BLT.  Yes that simple...the perfect BLT...ironically at the time I was allergic to eggs.  And we were all at a friend's "lake house" think more Nancy Meyer's movie lake house...and anyways Leah was making everyone omelet's.  As I finally unraveled myself from the Heavenly Bed way before the Westin had that motto Leah made me the perfect BLT....she went on then at the same location to make the perfect Brisket for New Year's and then at her now husband's house a year or 2 later a standing rib roast that melted in your mouth, and caviar mashed potatoes...for all you foodies out there I could go into better details but trust me...they were the perfect fancy comfort meals one could desire surrounded by amazing friends, good wine and laughter...lots and lots of laughter.

Re-telling this feels like I am 90 and reminiscing of a past life so far away that you need to give someone witness to my life.   When I re-tell these stories and I can feel how at ease my life was... it wasn't without nervous energy, a bit of drama, but it was fluid and living....and it is perhaps the worst part of this disease for me living without comfort food as I remember it. The list of foods that I can not eat is so long it is easier to list what I can.  I eat these foods over and over and every time I try to branch out I seem to get punished.  Punished is not take a benadryl and everything settles like a stirred up pond with the chaos slowly descending to a beachy bottom.  It is benadryl, inhalers, face rash...there are not one but many days of being more uncomfortable than I normally am...and thus I just can't go there anymore.

I try not to curse food, because I know there are people that are begging for it, that have no access to it, but there are many a days I feel humbly in their presence.  I have all this food around me that brings me discomfort and sadness.  The food started slowly...at first I just felt a little itchy / uncomfortable after eating....it started when we were living in Napa.  My X (who is a very good cook) in fact anyone I've ever dated knew how to cook...it must have been an instinctual survival guide....some woman find a pull to a partner on a primal level to produce children for our world...yeah I skipped that and made sure they could feed me!  Then it got odd, I kept thinking I was having panic attacks mostly at restaurants...I would get hot, and sweaty and short of breathe..and real edgy...well when you don't know you are allergic to celery salt and most restaurants use it to season it problem arises.

The biggest difficulty about being allergic to so many foods is that is a go to for people to care for you...bring a dish.  It is a mutual exchange of giving and receiving that makes everyone feel good...comforted.  This is just not possible anymore.  One of the greatest gifts I have ever gotten was when my mom had shingles and the Women's Club in Elm Grove put us on their dinner rotation.  Those meals saved my father and I...and wow how there are a lot of amazing cooks in Elm Grove.  What I wouldn't give to be the elegant sick person that someone brings chicken soup and they join me as I lament how nourishing to the self and soul their hard work has gifted me.

My niece Addison brought this to me on a particularly rough day.  At first I did not notice the kind words.  Your Cool (yes Steph and I laughed at that one) Your the Best and I Love You.  Broke me apart and put me together again....
(will teach her your vs you're at a later date)

As I can tell from this very short idea becoming a very long post I could write a book just on the food and the missing of it.  I block it out now, finding it's just too much to add to my proverbial plate. 

Tuesday, June 6, 2017


Me and Soph

My current care giver had asked me if I would answer a few questions for a paper she was writing for one of her classes at Madison.  I just realized as I was clearing off my desktop that I had saved my answers.  So thought I would share it.  Nothing really new but my quick first thoughts as I did this assignment.  Also thought very thoughtful of her to do.  The photos are the images attached to my friend's or family's cell numbers....figured kind of interesting...

1.     Can you describe how your daily life differs now than it did before you were affected with this illness? 
My daily life has little to no resemblance of my life prior to this illness.  The best way I can describe it is that I “think” about everything before it happens…I cannot remember the last time I just woke up and set about my day.  Most days I wake up and my first thought is I am still sick? Then I think about sitting up, think about if I am in my ranch house I can get some juice by myself.  The entire day goes like that…it’s very much in slow motion and if I want to go “do” something which may be a doctor appointment or a short trip to a friend or even someone coming to the house it is well planned.  And often despite the planning…enough to eat, enough rest, etc…it doesn’t mean it will happen.
 My idea of productive now is “did I make it out of the house” or I was able to read a novel without being exhausted or making my own lunch or dinner; which means warming up or taking something someone already made for me out of the refrigerator.
 My plans exist very in the “now” there is no way to plan how I will feel hour to hour or day to day.
However, the one thing that hasn’t changed according to my friends and family is who I Am..but I need to be reminded of that constantly…because though I feel the same on the inside my body prevents me from going to or experiencing anything in the same way.  I “make” it…about a few times a year I have this amazing day where it all disappears and I feel like I’m living a dream or waking up from a nightmare.
 My life before is I got good grades. Went to Boulder, got sick got my tonsils out felt like a million bucks transferred to UWM had a major in Psychology and a minor in African American Studies.  Volunteered at Children’s hospital, joined Public Allies of Milwaukee (similar to Americorps) worked in the inner city as an Economic Development Coordinator – did that for 2 years lived on the East side of Milwaukee traveled all over the US and London and France 3 times.  Got interested in health and economic status, went to massage therapy school while I went back to school for pre med pre requisites.  Had a massage business, lived by myself, went to school – looked at three different Naturopathic Medical Schools – Portland, Seattle and Phoenix again all by myself – not meaning alone…meaning I enjoyed doing things like that.  Decided to go to SW College in Phoenix a city I had never been too…and mostly the decision was because it had a quick direct flight back to Milwaukee b/c I had so many friends weddings and visits I wanted to be able to go back and forth for a weekend.
 Now my accomplishment is staying sane and happy with this new situation.
   2.     Upon the diagnosis of your illness, what were some of the major changes that had to take place? (living arrangements, caregiving, etc.) 
Like most people with this illness that was the most frustrating part…not getting a diagnosis that wasn’t a psychological diagnosis. I first started feeling not well about the 3rd year into school…even the first two I did notice I could not keep the rigorous schedule.  Early mornings school all day and then nonstop studying.  I didn’t know then that this was an illness I most likely had since Mono at age 11 that went into long periods of remission.  Until my tonsils out at 19 I did not realize how unwell I had felt since that initial mono diagnosis.  Eight years ago CFS/ME was still a very isolated illness, now the internet and advocate groups has changed that. 
My first bad symptoms came I did about a mile and half walk with a friend of mine for years and I started noticing when we were done I would get in my car and be shaking.  And I would go home and just crash.  I went to my school’s medical center got retested for mono but my titers weren’t very high and so I just dealt with it…I didn’t tell my friend how sick I felt, then one day we added this canal to our circle walk and all of a sudden I said I cant walk anymore.  And since we were isolated there was no way to go get a car so I would walk a few steps and then sit down and we just kept doing that.  That was the last time I went for a long walk.  I started changing my class schedule, dropped down in hours…I just adapted.  Then it just got worse and worse.  I had moved to Napa and got a job as a receptionist at a spa and couldn’t do it b/c I could not stand for more than a few minutes.  I had not been diagnosed with POTS didn’t even know what it was till 5 years later.  (Postural Orthostatic Tachycardia Syndrome…basically your heart works really hard just to stand ) I also had lost a ton of weight-I was struggling to stay above 100lbs – I had every symptom of hyperthyroid but my lab was 1/10th off so the doctor said it couldn’t be that. 
I then went to Mayo Clinic and did a million things and my longest visit was with the psychiatrist that said I had suicidal indications – and that I was depressed and anxious…. yes I was depressed and anxious b/c I was really sick and no one was listening to me…no one said “we don’t know”
I went to an endocrinologist at the medical college that asked if I was sure I wasn’t anorexic or bulimic…. after that I was done and had no respect or trust for the MD world – I found my doctor in Phoenix and switched to a completely Naturopathic approach.  She never really said “you have Chronic Fatigue” she said you are really really sick and it’s going to take a long time.  I had a chronic strep, staph, CMV and EBV infection.
I now live in 2 states b/c my doctor is in Phoenix and I can’t deal with the winters I get too sick.  I have a driver or care giver when not in Wisconsin full time.  Here at home my parents do a lot and I have help to ease the burden.  Nothing is similar.  Everything in my life revolves around this illness.
 3.     What are some stressors that you deal with now that you didn't have to worry about previously?
Biggest stress is who will take care of me.  I panic if someone isn’t on speed dial.  And financial…my illness is so expensive between alternative treatments / regular medications/ care givers and not earning an income…if my family was not or continued not to be in the financial state we are in I know I would be bed bound and far worse.  I am able to have a quality of life b/c of adjustments.

4.     What are some buffers (things that ease or relieve some of the stress) that help you push through the stress of dealing with this illness everyday?
I’m lucky that I am not by nature a depressed person.  I get depressed about this illness but that is a very big distinction from someone that suffers from clinical depression and it is important people understand the difference.  Clinical depression is a horrible mental health problem but very different than being ill and being sad.
Steph Cell
You learn who your real friends are and the biggest thing is my closet friends adapted.  And we still laugh and joke and the conversation doesn’t revolve around my illness.  I think when the movie The Forgotten Plague came out that was a turning point for me I could say – watch this – I tried I write a blog which does help ease the stress – I leave it on the page but it was still hard for people to believe how sick my day to day was if they only saw me pull it together for an hour.
The biggest stress is lack of independence and privacy – and then you let it go.  The book How to Be Sick by Toni Bernhard was also a life saver – bc it was things I was already doing and see that was how others coped helped a lot.
 My dog – is an amazing companion.  Bird feeders…I’m not much of a nature buff but looking outside helps. In phoenix I have an amazing sunset view – music… Smart TV.

For me social media does not help much –it’s not what I would have found important prior to this illness so it is often just depressing and has me focusing on what others are doing rather than what is in front of me.  I can say like with my nieces and nephew whom are huge stress reliefs I can’t take them places or be the aunt I would want but what I can give them is my complete attention – and in this day to day of such a distracted world you would be surprised what a gift that is. 
Having people to vent to that don’t put too much into it – realize you have to let it out but then let it go.  I focus on what I have not what I don’t have.
 5.     How much of your stress do you think comes from the fact that you are dealing with an illness that there isn't many answers for? What does this make you wish to see in the future? 

The medical community stole years from me and I’m quite angry about that.  I know now that I needed to balance my life and large stresses my body couldn’t handle due to how long it took me to recover from my initial mono at 11. Had I known that I would have stopped way before I did with medical school etc. I also blame them for making me feel crazy rather than say I don’t know.

Then you take the internet plus lack of answers can also be a huge stress…there is no one path and you hear one person do so much better from this treatment or that treatment so you can get pretty lost and into a deep hole of trying so many things… Also if a medical community doesn’t believe you then it’s much easier for your peers not to believe you – and give you all these insane ideas to try…b/c so and so got better doing meditation. Yoga, eating organic etc…

Gosh the future…I think the traditional medical education and the system of medicine is so messed up I don’t even know ..I hope for a quicker diagnosis, that the patient is to be the best indicator of this illness…no one drops out of their life, I hope for a few medications that will help….more trials…ways to prevent.  I hope this illness can unlock the mystery on other illnesses…most of us are very sensitive to the world around us having an over active immune system for day to day scents, foods etc…and it appears this new generation of children have a lot of allergies…I hope treatments will lean towards supporting rather that suppressing and immune system.  I hope I will see it…with the online community, ME Action, the two movies Unrest which is making huge strides internationally at film festivals, and The Forgotten Plague there is progress in awareness and that is a beginning.

(As always thank you for reading.  And ugh did best I could with the spacing transferring this from a word file...also there are many more people's cell phone images I could share...and I'm sure grateful for that...)

Thursday, May 11, 2017

"typical day"

While I was lying in my towel after taking a shower I felt like I may have the words to describe what a "good"/ "decent" day so far is like...I didn't sleep that great mostly due to a shoulder situation which is different story but needless to say I have about 10-15% mobility w my right shoulder, and actually right now typing may not be the best idea...and yes I'm getting an MRI...moving on...

 I woke up about 7am went into the kitchen and got some juice.  Went back to bed, woke up at 8am and thought I'll go turn on the coffee pot.  My mom with a religious fury always has coffee ready to go.  I went turned it on and then debated...if I go back to my room it might be too much to get up again - so I sat on a chair next to the kitchen.  I didn't hear it click on so went into the kitchen and realized it wasn't set up..no big deal.  I open the cabinet and see the grounds are on the upper not lower shelf..that makes me tired the extra reach.  I go to the left drawer where I last (a year ago) saw the scoop and it wasn't there, that makes me a bit fatigued.  I look up and see it on the shelf next to the coffee cups..I grab it and the filter put the filter in and that's it.  All of these menial tasks early in the morning are too much...I debate do I finish or not ...I stare for awhile immobile at the coffee machine and go through the next steps.  How many scoops have we been doing 6 and 6 water?  That means I need to go get the water, fill it, I begin to open the jar with the grounds and like a little league baseball team with a run limit - I call it.

Looking good for 14 !!
I'm not angry, I'm not upset, I'm not really even that defeated.  I sit in the chair decide I can't stand the news so will watch trashy NYC Housewifes from last night and wait.  My mom gets here, feels bad, no reason to feel bad ...she waits on my like a handmaid.  She makes the coffee we watch NYC she makes breakfast, I eat...still on the same chair.  I realize it's quite nice out and go sit on my chair on my front porch.  My mom leaves for awhile.  Sophie decides to get a burst of energy and I feel well enough to follow her around the yard as she is running free around the house.  Walking around before noon, this is a big deal.  I make a mental note and don't take it for granted.   I say hi to my neighbor.   I see my sister and my niece in their driveway, I yell a few times but someone is doing yard work...I debate the walk to the fence - but it feels like to much effort.  I video Sophie and then can't find her and realize she has had enough and is in the house.  When I come in she looks at me like alright enough already back to bed…

I help her up on the bed but I'm feeling pretty decent so decide to take a shower.  Showers have gotten much more tiring without the use of my right arm.  But it still feels good, I'm not too exhausted and then somewhere after shampooing I make a conscious decision that conditioner would be too much work.  Then there is the stillness.  Much like staring at the coffee.  I feel a bit trapped.  I know I need to wrap it up but all the steps to get out of the shower I tick thru my head.  Turn water off, open the door, reach for the towel, try to put towel on without hurting arm, put small towel around hair, dry off.  So I just stand there for awhile in limbo.  Knowing the longer I am standing in warm water the more fatigued I am getting but the idea of the next steps are quite overwhelming.  So I tell myself like a band aid rip it off don't think do the first next necessary thing.  And I do.  I turn off the water....and the next steps I take one at a time.  I open the door step out, grab the towel, put it around  me and my head, already knowing brushing teeth is too much.  I open the bathroom door and Sophie is staring at me and I walk the 5 steps and lift her and crash onto my side.

She comes straight to my face, kisses my nose, licks some water off my hand...feels like she's checking on me....I lie there for about a half hour.  I'm listening to a playlist, Adele is on it and for some reason it hits me that Adele and I aren't the same age...I'm turning 45 in a few days.  This cracks me up for some reason..I have no idea why. A text brings me out of a trance to reflexively grab my phone.  I text with my aunt for a few beats.  The phone is in my hand so I realize best to call my mom now, if I put it down not sure when I will have the energy to grab it again.  I ask her to get me some lunch...which lately the most edible has been hot dog and Jimmie Sundae from Gilles.  I sit up pick out some clothes...get dressed.  My hair is still unbrushed and not in a messy bun b/c I can't tie my hair up without assistance now due to the arm.  I sit back in the chair and decide to type this and wait.

My mom arrives.  I putzed around on FB.  I've sat long enough to get up go brush my hair, bring in the rubber band and she does my pony tail for me.  Often like a petulant child I say ow or that's too low or too high...the frustration getting the better of me.  See I have a nervous habit of taking my hair down and back up that I use to do thoughout the day...not anymore.  I walk over to the dining room table where my makeup bag is and face moisturizer.  I sit on a different chair.  I can't stand to look at my face, I can feel it sore and red.  Detox reaction.  It seems to go in phases, and I know if I'm not super on top of my tincture and pills to help my kidneys detox my face has this rash.  I routinely set about to moisturize, put on some makeup and lipstick.  Back to the other chair.  My mom brings me lunch.

This is my day, this is a pretty decent day.  I have not eaten either meal in bed....highly unusual. I have a friend stopping by at 2:30pm.  I have my college caregiver having her first day today because my parents have a function downtown, leaving at 5pm so I need to have someone here to help with dinner.  I hate that idea, but I know better not to pretend I won't need the help.

I've decided to start Twin Peaks on Netflix since it's coming to Showtime.  Today so far had pretty many accomplishments that my old life would laugh at calling them accomplishments.  Lately I vascilate from ...vascilate is spelled wrong...spellcheck isn't working...I don't have the energy or quite honestly care to google it....but back to "vascilating" between a longing of my old life that is visceral in nature, as if that whole other life was a mirage and the person living it I'm not sure is exactly the same or unrecognizable.  My liver hurts.  I know most people don't know what that means, but it does it feels swollen and irritated.

It's 2:20...my friend will be here shortly.  I am going to figure out how to get the video I took of Sophie on this blog.  And that's a wrap.  Tomorrow will look similar to today.  Maybe better maybe worse...

Thanks for reading - my brain is tired and the thoughts quite uneloquent...typo...oh well...see the beauty of this illness, that's the small stuff I don't sweat the small stuff.  xo xo H

PS  This past Saturday or maybe it was Sunday...I made it to my nephews soccer game on that beautiful day...just sitting there on one of those outdoor chairs just like anyone else...

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