How to Be Well

Sunday afternoon I was gathering the last few things to pack on my way back to Phoenix.  It had snowed the day before; I felt this was a fitting sign it was time to go.  After this early snowfall it is hard for people to understand that the pit in my stomach was as big as the Grand Canyon and my resolve not to get on the plane was growing deeper by the moment.  I started some nervous rituals such as looking at what jewelry I should pack and the gloom and doom if something happens all my jewelry goes down with me...thus none for my nieces.  I then chastise myself this is absolutely ridiculous as I put my grandma's engagement ring in and out and in and out and back out again of the case.  Then I thought I will put it on my finger and that will answer my neurosis - it didn't fit.  So of course it was coming with me.  The sliver of a gold band was not.  Then my attention turned to my slightly swollen fingers that the aforementioned ring didn't fit and the muffin that has arrived around my waist...and vanity blissfully helped my resolve to get on the 5pm flight.  My doctors are there, the weather will make it easier to walk outside, perhaps I can fit more comfortably into my jeans.

Then I just sat.  I sat in my bed and looked out onto the snow and I sobbed.  And I sobbed and I sobbed.  And then I grabbed my calendar all swollen eyes and fingers to pack and I turned the page..as if a year ago I knew I would need a sign as it turned to December; be brave and I thought of the badge a friend had sent to me that hangs in my bathroom "I am brave."  I can do this again, I can do it because it is the best chance of next summer being more...living more.  I reminded myself that feeling brave and being brave are two very different things.  It may not sound challenging to head to sunny AZ, but it is so much more than a flight.  It is a continuation of a fight; one every year feels harder to win.

I am tired of doing this trip -this trip means this illness is still in the driver's seat; and I'm so so tired of being a passenger.   Yet I'm so grateful that my body doesn't have to push through a winter.  Every six months I go through the same pro and con list and find the list where I am out ways the list where I am headed.  There is more to write on this but for the moment I will leave it at that.  I had pulled it together pretty well; knowing no matter the little voice inside my head it was a test not a sign and I would be traveling with my parents and Sophie on the 5pm flight from Milwaukee to Phoenix.  Period end of story.  And then my niece walked in - "no one told me you are leaving today...no one tells me anything" For the love of God stab me through the heart twist and turn it and then hit me over the head.  Luckily resolve was set and I was able to comfort her rather than indulge myself.

She asked ten year old questions..."what are you doing for Thanksgiving"...oh honey nothing but that's no big deal I can't eat most of the good food anyways.  "Why can't you see a doctor here"...well soon maybe I can there is more information but these are the doctors that have helped me the most and the weather is hard on me....I said I was so sorry I thought she had understood last night that I was leaving...and then realized the suitcases were in the guest room and maybe leaving to her just meant she was heading home.  To be frank I was a bit surprised at her nonchalance attitude and even joked she was getting so grown up it was no big deal I was heading out.  A good reminder of what we say and others hear are often not the same thing.  I did the only thing I could I just held her tight, and tears silently went down my face and reminded her she would be too busy to even miss me.  This is not a vacation...this is hard.  It is hard to leave and it is hard to stay.

So here I am.  I have arrived.  My doctor has a new machine that is similar to the UV blood one that I have done before but more powerful.  That is the blood is removed and taken to the machine and honestly I don't know exactly what the fuck happens but its been helping her other patients that are living in limbo walking the tight rope and she is very hopeful it will push me to the other side.  The good news for me is that I am only going to her office twice a month so I do feel a bit like a snowbird on vacation.  So I am scheduling "outings" in as I would a doctor appointment and seeing what can be accomplished.

I have learned over the past few years of being relatively stable in this instability that pacing is my number one best treatment option.  Which is a really hard concept for those that are well to understand and very difficult to do without constantly questioning yourself could I do more - should I have done less.  I am trying to look at the next 6 months as a sabbatical - being isolated from so many friends and family there is a bit where I can breathe again.  I don't feel like I am constantly disappointing people or watching everyone live these full lives that mine use to parallel.  Being secluded in Phoenix often is less lonely or a different kind of lonely than being back home.

I gave Sophie a bath tonight.  It was a wonderful feeling that I was able to take care of her in that way.  She normally isn't a huge fan, but she was quite docile I hope because her skin is a bit sore and it felt good.  However the reality is that she is more fragile.  Oh don't get me wrong she is feisty - ask anyone besides me that dares to try and pick her up.  Our time is limited that is not in question - and I can only hope that its some mystical sign that she will leave me when I am well.  It's fanciful thinking but one I've thought of a lot; this past summer I have needed to care for the ever present companion.  She is tired; and I only too well can empathize.  Love.  I had intended this post to be completely different than what came to be...til next time. xo xo

My favorite book that helped me cope with this crazy illness is Toni Bernhard's How to Be Sick.  I am just praying that soon I will re learn how to be well.  How to Be Sick 2nd Edition

xo xo 

Empty Hand

Nada

I had some pictures to share, but my aol isn't loading…cue the "AOL" jokes….but the picture was or will be if I get it loaded of an empty hand.  The Purple Pill turned into a White Pill (same drug lower dosage) which turned into no pill.  As my doctor said, now let's not throw the baby out with the bathwater, to which I replied have we suddenly been transported to 1952 analogies?  So what happened?  I got worse.  Really worse, could not move worse. What normally happens…he said normally people don't' feel anything and then start gaining more energy.

So where too now…we wait.  We are messing with my thyroid in a different way, getting more IV's more injections, still going to my other doctor, waiting on new labs…what did I do…I called my dad and sobbed.  I really can't even type right now because I still feel like crying, well liar liar I am crying.  I tell myself - I am lucky some people their drugs don't work and it means they are going to die.  This is not the case, but lately this doesn't feel like living.  Thankfully, which I never do I reached out to a FB group and a kind gentlemen replied to me he felt awful on LDN also.  It just feels so defeating…I thought I had given no hope to this little purple pill, I swore I told myself we just will see, but that hope was there and when it failed I felt like I failed too.  The expenses - some people (well my grandfather but that's another story) have attorneys on retainer, I have doctors on retainer.

Text I sent my neighbor last night

And then I cried even more last night because I binged on 4 dresses and one pantsuit…well  I shopped the way I do planning on returning.  What I didn't plan on is not being able to button the dress and getting stuck in the pantsuit.  I'm not sure what has me more upset the Purple Pill or now a physical body I don't recognize that seems to have had a conference with gravity and gravity won.  Oh right on the list of things that are bad - my muffin top you would think is last on the list but it has moved right on top.  What can I do? I can't change my diet, I can't exercise and god damn you illness now I don't enjoy a box full of Diane Von Furstenburg dresses ….Fuck it all - at least jewelry doesn't care if your tummy has expanded.

View Home

This is Vasil...He's from Bulgaria his wife was an attorney there.  He drove me one day when I called the Biltmore Hotel in desperate need for a ride.  That was 3 years ago...Vasil is family.  I left the note because what he has given me is nothing compared to a dinner at the Wrigley. 

But through it all I was driving home yesterday from an awful blood draw and Vasil was driving me and I felt so grateful.  I have a lot of people I can cry too… I've done my best to make lemonade out of lemons…hopefully I can eat a lemon soon.  If this illness was as simple as a purple little pill then we would all not be blogging and making movies, and begging for funds… I tried, I may try it again once I'm maybe stronger but I don't have the what if I had on my shoulders that I hadn't.  And maybe today I will try on those dresses and not give a damn if my once flat stomach bulges a bit - no need to throw the baby out with the bath water.

Here's a few more pictures for the fun of it...and since AOL decided to cooperate and load...

Christine and Capri who has been hanging with us on Fridays

My hysterically funny wonderful new neighbor and Wonder Women's lasso she got at a charity function

My darling

The wedding in the background that Chrissy and I spent a good half hour w binoculars
and hysterically laughing as we came up with scenarios of whom was who...

Three hours later after this was first written got the photos to work…guess I wanted to show it's not all bad there are always moments of joy and nonsense and laughter….that help with the fear and the desperation..

Purple Pill

Matrix

Here's the thing about this illness; every choice is an unknown entity and I'm not a high risk player. (Side note I  just watched Molly's Game - recommend)  I recently decided to consult a second doctor; for one reason he does concierge medicine - and hell who doesn't love a concierge I can pretend I'm at the Four Seasons doing spa medicine.  Also, because I trust him - not him necessarily as a doctor yet - him as the person which in this maze is in my opinion a pretty close tie of importance.  What I mean is I trust he understands how complicated it is, I trust he understands the emotional toll this illness takes, I trust he understands how conflicted I feel that I won't be discussing this with my current doctor and I trust he has continually evolved as a doctor since we last crossed paths.  I also trust that sometimes as my dear late friend and doctor and massage client once said, "is it a test or is it a sign?"  And I'm trusting my gut that the serendipitous way we re-connected was a sign that it was time.

But here I sit for the second night in a row with this little purple pill in my hand feeling like Keanu Reeves in the Matrix, wishing I was staring at Lawrence Fishburne with my face reflecting  in his sunglasses urging me to take the little purple pill; here's the thing there isn't another option in my left hand.  Just the purple pill in my right.

But first how I re-connected with the second opinion  doctor then back to the little purple pill.  I was helping a fellow CFS/ME patient trying to recruit attendees to the Tempe, AZ screening of Unrest that she was hosting.  She asked / I offered to contact my alma mater SCNM to encourage Naturopathic Medical students and faculty to attend.  I had heard an old colleague was working back at the school, I emailed him - he emailed me who he thought best to contact we exchanged pleasantries - period end of story.  End of story meaning my school showed zero, zip, nada, interest in cooperating with such request.  Oh, I'm sure if you ask they will pretend no one contacted them; yada yada moving on….about a month ago the same person contacted me and said, "Did you see that SCNM is HOSTING UNREST."  I replied - not shocked I'm sure they heard Univ. of Arizona Medical Center is hosting in their Phoenix location and now they don't want to miss out.  I shoot out an email to the same colleague asking if he knew who was hosting Unrest at SCNM and he said he had resigned and was back in private practice…concierge medicine and also an office in renovation close to my home.  

Test or a sign?  I don't know that's why I'm still staring at the little purple pill like its the biggest life decision I've made.  And perhaps in some weird way it is - because it feels on some level like the first decision I've been well enough to make which ironically I have my current doctor to thank for.  In the beginning this was all such a blur I wasn't really making decisions they were just being made.  I was so lost, the doctors I was consulting were worse than lost they were arrogant and wrong that for 3 years I just kept moving and being told I wasn't sick while getting sicker.  My current doctor was the first to say you are a very sick person and I believe you.  That is powerful, that is a life line and that is hard to tether away from…but I've stalled.  I've stalled and that is no one's fault and maybe it’s not a stall it’s an as good as it gets situation.   However,  my current doctor sees one path and she would disagree with the path I'm considering…and here's the catch - no one knows - the only thing that will give me the answer is to take what feels like the very unsafe untraveled road because I haven't taken it before.  It could be disastrous as anyone with this illness knows - wrong moves are like playing chess - well I'm trying to learn chess and I don't get it - but a 9 year old is trying to teach me.  Point being I'm on the safe road right now and I've been getting really good at it - and that's the unknown - is the safe road the correct road or am I missing the chance at improving by taking the back roads?

The little purple pill is "just" Low Dose Naltrexone- everyone is doing it …. but I haven't.  I'm not in a body that anyone really understands and what is working for a lot of people doesn't work for all people.  What's the risk in trying….everything.  Or that's at least how it feels.  Going against the advice of your doctor for 9 years.  I told someone the other day the old saying don't make decisions out of fear.  This is where I feel a bit catch 22…this fear it isn't made up - it's real - it has merit but it also could have rewards.  What am I willing to risk in order to gain?  I told my new consult doctor if you laid on the table the promise that what you are recommending could give me 5 years of my pre sick life.  5 years of not having to worry about what food I ingested, the opportunity to travel and have my nieces and nephew see my old life and participate fully in theirs, if I could go see where all my friends lived, if I could feel that freedom of living again or I could live til 90 like this…my gut is to take the 5 years.  That's an awful position to be put in; and I know I'm not the only person that has been backed into that corner - the one of looking at a life before and a life after…and this damn little purple pill it's not just the pill it's a new leap of faith that there is still some hope to get back what I had.

As I was getting a saline IV today the assistant to the new doctor said okay take a deep breath in and let it out…she was afraid she would hurt me and I kind of laughed and said being poked more than once is really not a big deal.  My hand was squeezing one of those little stress balls to pump your vein up and my head was turned and I said to her, can I let go…she said yes.  I replied I suppose I should take that both literally and figuratively.  

Time to let go.  I have no idea what the right choice or wrong choice is - no one knows.  I know the reason I'm not taking the little pill sitting on my bedside table is fear.  Fear that I've handled what I've done can I handle getting worse if this backfires?  But at the end of the day I said I would try for those 5 years…there is only one way to know.

Today is the 50th Anniversary of the assassination of Dr. Martin Luther King…and as I'm writing that realize that he too said the something similar about something much bigger than himself…this illness is much bigger than myself, all of us - every single patient like many illnesses before and many unknowns have taken risks - we are our own guinea pigs right now - we are communicating the science waiting for the science to catch up to us, we have all been blessed with living the life of the promised land the life in a body that free will gave you choices and something took those choices away.  We as a community have rallied together around each other and shared our experiences - we have been marginalized, maligned, and through the collective voices of the Internet gave us a voice.   

It scares me more knowing that after that sermon on April 3, 1968 it was a prophecy to his murder, and I will go back to my dear late friend Kate Hart - is it a test or is it a sign and I choose a test.  A test do you have what it takes to dig beyond the fear of the unknown when the reward could be the removal of the shackles you have adjusted to live with.  I have no clue what the blue or red pill did in the matrix but I know this little purple pill means not giving up…choosing the road I haven't traveled that in of itself feels a little like my pre sick self.

This post is dedicated to Sue Jackson for her amazing blog Live with CFS where I re read all of her LDN posts.  It's dedicated to all the patients on the FB groups that support one another.  It's dedicated to my nieces and nephew - they give me a reason to choose the unknown.  

This post was also written with sweaty palms a pounding heart and also gave me courage to not feel so alone - knowing that others reading have been in this very same bind and others I have read gave me the nerve to try.  It's time to let go -  I swallowed the pill.

Little Curl

This is not me; may as well be
For my wish is the same
Do not read to the end of Longfellow's pen
Be happy and free and loud as can be
With no worries of repercussion 

There was a little girl,  And she had a little curl Right in the middle of her forehead. When she was good,  She was very, very good,  And when she was bad she was horrid Henry Wadsworth Longfellow (1807–1882)

She sat in her bed screaming in her head man oh man this can be dreadful.  The world she once knew no longer resembles the view she once so meticulously treasured.  A sweet aging dog wonders what has gone wrong will we ever get better?

The stories she is told by strangers unmoored by her vacant displeasure.  Do you fail to comprehend the depths of my dread and struggle to keep it together?  So forgive me but please stop telling me your displease with nonsense and trivial matters.

Oh to be just a mere twenty-three; oblivious and free of the future endeavor.  I try as I might to be sugar and spice but some days the weight takes all my strength and my patience is no longer tethered. The map I had drawn for a path til my dawn is unrecognizable and no longer of matter.

I once was a girl who had many many curls yet the one that remains is quite horrid.  I try as I might to tackle and fight but this curl keeps falling hard on my forehead.  I can still feel that little girl dancing a twirl on the green green grass of summer.  I beg her not to go, I miss her so has she disappeared forever?  No.  She is there, that is for sure, so be brave don't deter;  tomorrow she may be the one to save you.

Long December

A long December and there's reason to believe
Maybe this year will be better than the last
Adam Duritz. Counting Crows


It's been awhile.  This has been a long winter...hell it's been a long decade but this winter has been too much.  So at night when I couldn't sleep for some reason I hit Amazon music app this album came up and it was never one of my all time favorites...it's not downloaded on my ipod...but it brought me back to a time when everything was much rosier.

It made me laugh a little at myself remembering my friends making fun of me when this guy had made me a mix tape...yes bring it back if there are any millennials reading...way back to the age of CD players with a combo tape player the dedication to make a mix tape is nothing to laugh about.  This album has two songs with my name in it. The one off top of my head is "lay me down in fields of Heather" which was from Rain King.  Soon as Heather would come on they would tease or rewind and play it super loud and we would all be howling laughing.   Irony not lost on me now the feel so alone and lie dying.  But it oddly soothes me...belly of a black winged bird...I bought a Raven painting when I first got to Phoenix....but anyhow I digress every time that mix tape was played in my car or at my apartment the howls of ribbing I can still feel how good that felt.  Laughing.  I really use to laugh a lot.  I never minded being teased - I am if you ask most people that know me often an easy target.  To keep with the theme of my name, my Uncle has a word for it.."Heatherisms"  For being quite smart I can say some really stupid things and can never get a common phrase, what are they called - be patient my brain hurts - umm like "water over the bridge"  I often get those all messed up...but anyways point being while playing this album even half asleep when Heather comes over his mouth somewhere no matter how bad I felt like my old self a little happier and a little sadder all at once but always safer.  Safety in the reminder of how I use to be and I'm still in here.


The long December.  I looked up as I like to do the meaning of the song and Adam Duritz wrote it after he had been visiting a good friend of his who had been careened by a car and she spent most of the winter in the hospital.  He was making the album and going to and from the hospital and at the end as he said as many of the songs  in the album things may not turn out great, but they may just be better than the last and that's hope. And that all felt quite prophetic as I read the story behind the album that has lulled me to sleep this long winter.  Interview transcript

I have a post it note in my bathroom in WI and it says with a bad drawing of a square dog; no idea why that was my doodle and can't now remember if it was mine or my niece had drawn it and I grabbed the paper.  It reads "remember it will pass. Dec 15th 4pm - 6pm"  That is my life; reminders that for those two hours it I felt really good and I needed that post it in the bathroom drawer that no matter how bad things seem or difficult there is some good in every day and some days like December 15, 2017 there were two hours good enough to make notes on a post it.

Rain King

When I think of heaven
Deliver me in a black-winged bird
I think of flying down into a sea of pens and feathers
And all other instruments of faith and sex and God
In the belly of a black-winged bird
Don't try to feed me
'Cause I've been here before and I deserve a little more

I belong in the service of the Queen
I belong anywhere but in between
She's been crying, I've been thinking
And I am the rain king

I said mama, mama, mama
Why am I so alone?
I can't go outside, I'm scared, I might not make it home
But I'm alive, but I'm sinking in
If there's anyone home at your place
Why don't you invite me in?
Don't try to bleed me
'Cause I've been there before and I deserve a little more

I belong in the service of the Queen
I belong anywhere but in between
She's been lying, I've been sinking
And I am the rain king

Hey, I only want the same as anyone
Henderson is waiting for the sun
Oh, it seems night endlessly begins and ends
After all the dreaming I come home again

When I think of heaven
Deliver me in a black-winged bird
I think of dying
Lay me down in a field of flame and heather
Render up my body into the burning heart of God
In the belly of a black-winged bird
Don't try to bleed me
'Cause I've been here before and I deserve a little more

I belong in the service of the Queen
I belong anywhere but in between
She's been dying
And I've been drinking and I am the rain king
'Cause I say I am the rain king
'Cause I say I am the rain king, yeah

On a side note, I want to say I've never thought I deserved more...people have said that to me being very kind that I don't deserve this.  I find it an interesting choice of words and perhaps another entire blog.  We all deserve many things - respect and kindness and patience and understanding.  A little empathy and to forgive and be forgiven.  If I don't deserve this illness there is a line in front of me so much longer than I can see of so many that don't deserve the dish they have been served, but it's the dish you get.  I also believe I just did a Heatherism...isn't there one about a dish best served cold? What the hell I'm exhausted and not going to look it up and running on about no battery power myself and computer.

To conclude, deserve to me conjures up good vs bad right vs wrong.  This is just genetics plain and simple if you ask me.  thanks for reading. it was a long ass December and I'm trying to come out of hibernation.  This was a step.

What I know for Sure

Nothing.  I got ill at eleven and life turned upside down inside of myself.  I got ill again at nineteen and everything felt like it was collapsing.  I got my tonsils out at Children's Hospital at 19 and I remember the warm blankets, waking up and vomiting ice cream and pain lots of pain.  After about 2 weeks of no talking, one of those little flip boards that you could write on with that little red plastic pen and pull up and what you wrote disappeared...after pounding "screaming" words into that after 2 weeks of chicken broth something magical happened I began to remember what it felt like to live in a healthy body.  Not from a month prior or two or three but way way back from pre eleven mono.  And then somewhere into my 32nd year it all started coming down again and this time I can't get back.

What do I know for sure, about treatments nothing.  I question my decisions my doctors my referrals myself every single day.  Because here is the thing; no one knows.  I head back to Phoenix in a few days filled with trepidation and a bit of how much longer can I do this.  People see me, I pull it together for an hour they don't see the collapse when I get home.  My mom making me scrambled eggs, me shaking in bed, only two hours later to break out into sweats.  The next day my legs feel like they slept in cement, my head too tired to turn, my body too tired to eat.  So I go again - I leave my life to try and re gain my life.

There is a wave of momentum with this illness; at least in the film, in awareness, in people's stories...hopefully it will translate to studies and treatments.  The most promising for me is looking at the cellular dysfunction.  This is how it feels and also explains the light switch effect I will call it, going from feeling like my old self for this momentary time and then as quickly collapsing to a body unrecognizable.  I will say with all the attention I have empathy for those with the big illnesses...the big C for starters, where it seems there is no getting away from it.  All the ribbons and walks and pink - see that I would find a bit claustraphobic - or a forced joining in a club I didn't want to be a part of, hell I didn't like Girl Scouts...many find comfort in the solidarity and that I get but your illness splashed on TV, stories that mimic yours but yet aren't you...I don't know sometimes that too seems to be just too much pressure.

The film I felt pressure, like why couldn't I do this illness and some amazing project.  How did this person get healthier - what should I be doing differently.  What am I doing wrong?  I shudder that we lost an advocate on the heels of this new found hope.  Because hope and awareness without cures or relief can feel for me at least like a whole lot of pressure.  I don't know what Lara felt, I didn't know her but I saw myself in her.  She created a fundraiser for the Open Medicine Foundation in honor of her birthday, just weeks before she took her own life.  She was my age.  She was a mother and a wife, a daughter and a friend.  She went to two Unrest premiere's traveling and meeting Jen.  She sparkled in her photos, she looked like so many see me, alive.  I don't know what pushed her in that moment, but it scared me.  I know how it feels when everyone is chasing different cures and some get better some get worse the demands on your family and friends the life that you worked so hard to gain slip year by year slowly become defined by these tiny little moments of success that most can't even see.  I don't know Lara but I know she did her best...in my gut in my heart I know she did her absolute best.

So I will fly West - continue what I have been doing...trusting I am making the best choices that I have learned from inhabiting this vessel for the past 45 years and maybe just maybe that switch will stay on.  That's all I really can know.  Isn't that the greatest lesson to recognize what we do not know...I don't know what is going to get me better or what may make me worse.  I just know that I have a choice - a choice to keep trying.  A choice to honor the life before this took me down and find a way to be joyful and proud of the after. 

I know to recognize moments of perfection and hold them close when so many other moments feel cruel.  Yesterday Sophie was sitting and crying under her breathe.  She normally doesn't like to be petted when she's a bit confused at night.  But for some reason last night I went over to her and put my forehead to hers to tell her best I could we're okay.  You and I this night time Unrest, we are okay.  She let me put my head to hers and kissed me above my cheek and her little sandpaper tongue swiped my eyelashes...and time stood still and I thought this moment I am caring for you as you have cared for me - I know that is something beautiful that I know for sure.

In memory of Lara Henderson
http://www.heritagechattanooga.com/tributes/Lara-Henderson

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.