Monday, January 30, 2017


It's 11pm on Monday, January 30th and it's quiet.  Yes quiet in my room, but more importantly quiet in my body.  Unrest, formally Canary in a Coal Mine just premiered at Sundance and its name change is perfect. We are never resting, despite often being in bed.  This is the first time I have felt that quiet since New Year's post.  Thirty days of constant fighting.  It's a silent fight on the outside, unless of course my asthmatic cough starts up, otherwise the cacophony of symptoms hide behind my skin.

Beautiful Moon and North Star

My help left me.  The help that said she wanted to keep this job forever just a few months ago "resigned" laughable using such a big fancy word when she really fled.  Knowing the chaotic mess that would bring to me, my family and my health.  I think I still need more time to go into what happened; betrayal, confusion, concern and unfortunate clarity when someone is not who you thought they were.  Or perhaps they were and then due to situations unknown became someone unrecognizable.  So now I feel like my own house is like going a new year of boarding school.

My parents have extended their stay, while I found people to interview.  Settled in on two people to share the four days.  Christine is still with me, my life line.  Last week the new people "trained" aka followed my mom and Christine and it is an emotionally difficult situation for me.  When I get use to someone and comfortable and enjoy them I suspend my reality that on some days I'm Lady Mary, a snobbish aristocrat being doted on for no reason but of course who wouldn't want someone to comb their hair?  Then somedays I'm a pain in the ass pop star that can't be alone and is in need of an assistant because they are too lazy to get up and turn the light off.  But in the beginning, the looks of new people trying to understand my bizarre reality shines a spotlight on how this is so not normal.  It makes me uncomfortable, it makes me scared for the future, it bursts my fantasy and reality smacks me in the face.  It is humbling and uncomfortable for all involved.  And it is a necessity.  That is what I hate.

Sweet Baby

My parents leave Thursday.  The new people then had today thru Wednesday to be here with "back up." Today we needed the back up.  Despite my warnings about scents, and the person today prior never having any today the scents entered my room before she did.  I had a particularly rough time around 6am up a bit itchy and hot and uncomfortable.  And that's all it takes, one little thing to set the body into a full blown blaze.  I ignored it at first.  Tried to eat my breakfast as she was downstairs.  Then she came up to ask if I needed new juice and I asked if she happened to forget and wear perfume.  No - nothing.  Then I said laundry detergent, no use unscented….and then what about drier sheets.  Bingo.  Oh my goodness I just washed this yesterday.  And I said, you have worn really cute sweaters before I bet you don't put them in the drier.  Bingo again.  So she went and took the sweatshirt off, by now I've begun to cough.  Get it the Fuck together is ringing through my head.  Begging my body to chill the hell out.  I open my porch doors, sit outside and she comes back and I still get a whiff of something….are you sure there isn't something else, maybe hair spray.  Bingo again…oh no I did do a dry spray leave in conditioner.  Yep okay strike two.  Now she's apologizing as my lungs clearly are congested.  And she needs to go home and I say just come back after we get back from the doctor.  I am now doing my nebulizer.  Mentally and physically exhausted.

I eat my ham sandwich, yogurt, raisins and a cookie. Have a Coke.  We drive to the doctor.  I've done a new medicine, another post, and she does a color puncture treatment since we think I'm too tired to try the blood treatment today.  I get back home - all I want is silence and my bedroom.  My helper is back - sans all the scents and I can hear her downstairs.  And here's the thing I really don't want to talk anymore.  No need to apologize, it just is what happens.  And I can tell my parents are worried that I'm not sure I'm sold on this fit so they begin to both separately tell me about how she went and got unscented products.  Or did I realize her son who just had the baby is moving to Houston…and finally - the bitchy sick person comes out….

I don't care.  I really don't fucking care.  I have so little energy for people I already know, for myself, for getting through the day right now all I care about is can she take care of the house, my dog, my food and that's it.  It sounds very unlike me for those that know me.  But I'm tired.  I am tired of being scammed by people that take care of me, tired of being concerned about their problems when I have friends and family that I can barely give my energy too.  Enough; stop with the hard sell.  I know this is super stressful, you are leaving in 3 days and I will need to deal.  It is not ideal but it's my life.  And I'm tired of pretending this is all so glamorous.  That's how I survive.  But today, I'm tired and I have just had enough.  My parents will leave, the two new people will be here like it or not I will be grateful I have help, grateful I am in Phoenix for the winter, grateful if I have a good hour, and I will just have to deal even if it isn't the perfect fit.  It is not fun being dependent upon others - it downright is miserable.  But I am lucky we can afford them and I will adapt, period, end of story like it or not.

I have one caregiver here that is family, Christine.  I have one back in WI that just checked in on me.  I have 30 days unttil my family returns.  That means 9 days with Christine and grin and bear the rest.  Who knows these two may become just as close as the others, but I'm not there yet - this is not an arranged marriage or a dating site or a best friend app.  This is someone I need to just do the job, not take my energy with chit chat.  It's a hard job.  People don't think that when they start.  But it is a balancing act and you are also watching someone who is not well - and that is stressful.  So when the new care giver left she started in on maybe tomorrow will be a better day or hope you feel better or a blend of that and I just looked her dead in the eye and said I've been dealing with this for over 8 years.  Tomorrow will be a version of today.  And she sweetly said I get it, will see you tomorrow.  And as she left what I said in my head follows...

Today I have lost my ability to sugar coat - so please don't do it for me.  It puts undo pressure on a situation I have done my best to be the best patient I can be yet despite many good things at the end of the day, I haven't driven besides a mile from my house in 3 years, I haven't eaten at a real restaurant in almost 4 years, I haven't been out of the house besides the doctor except a handful of times, and the list goes on…so please I know it's well meaning and hopeful to come in and cheer me up but really it's cheering yourself up- cheering me up is knowing I have food in the refrigerator upstairs if I get in trouble.  It is making sure my room is exceptionally neat.  It is making sure you put waters next to my bed.  It is being quiet when I'm not responding.  It's respecting that I have a life, not what it use to look like, but a life and your job is first to do the job and then well then who knows but lets just start there.  And I know it is counter intuitive and difficult - that's what I told you when you started.  I'm not always the most pleasant of peaches…but I do my best.  What I know for sure is she seems kind and thoughtful and this hasn't nothing to do with either of these caregivers.  It has to do with needing something I don't want to need.  It has to do with for the second time being stolen from people I trusted.  It has nothing to do with them; and everything to do with I just want this to be over.  And new people remind me I'm not even close.

Well just because she's so darn cute !

But at 11pm there was this glimmer of quiet that ran through my body rather than the chaotic hum.  I went downstairs and fed Sophie a late night snack without being short of breath or weak.  I brushed my teeth and it didn't feel exhausting.  And I just sat upright in bed and enjoyed the peace.  I've had decent moments in the last month but they are moments of pushing through.  The effortless feeling in my body, that is a gift that got me to grab the computer and put it down for myself.  So I can whisper to myself on the bad nights…it will pass.

Monday, January 16, 2017

Someone Else to tell You…thanks Jamison

I have a few blogs pending…and came across Jamison's and thought…this says a lot of what I want to say and have limited energy to do so.  So thanks Jamison…took words out of my mouth.  I have to say I am grateful I have never gotten as bad as Jamison's illness…however it feels like living on a teeter totter never knowing when that jack ass friend of yours is going to drop you from the top.  However, I can not take care of myself, meaning eating and caring for my dog alone anymore and that will put fear through your veins…especially when your caregiver just "resigned" via text with no notice.  That's a whole other story.  Let's just say I've never truly hyperventilated like yesterday afternoon….

So here's to Jamison.  Oh and check out his T-shirts…send me a pic if you buy one.

Jamison Writes. com
Jamison writes

Tuesday, January 3, 2017

Ocean Photographs

My mom found the album with the pictures from the Ocean.  I haven't seen these probably since they were taken, and it's just as I remembered.  Thank you all for reading, commenting and supporting me and my efforts to share my journey with this illness.  Love love love. H


Mom's best friend Mimi
Me and Mimi.  Got to love the Dr. Scholls

The little wild one and pink gingham leash
Hearst Castle
Full Circle.  My sister's baby shower - to my knowledge none of
my nieces or nephew ever wore it ….

Into The Mystic - Van Morrison

We were born before the wind
Also younger than the sun
Ere the bonnie boat was won as we sailed into the mystic
Hark, now hear the sailors cry
Smell the sea and feel the sky
Let your soul and spirit fly into the mystic
And when that foghorn blows I will be coming home
And when that foghorn blows I want to hear it
I don't have to fear it
I want to rock your gypsy soul
Just like way back in the days of old
Then magnificently we will float into the mystic

Sunday, January 1, 2017

Deep End of the Ocean...

I have only one thing to do and that's
To be the wave I am and then
Sink back into the Ocean…Sink back into the ocean
Fiona Apple - Container

Sinking.  It feels like sinking into the deep end of the ocean.  Jacquelyn Mitchard wrote that book, I read it, but not until today did that phrase, that title feel more relevent.  I'm giving myself permission to write this while I still feel like I am swimming in the deep end of the ocean.  Most words I'm typing keep coming up wrong; typing something I pride myself in doing quite well.  Yes, I was someone that voluntarily took typing in high school during the summer.  I loved the click of the keys and the little books the had you doing A, D, E, K.  There were the sentences that used all of the letter combinations and the timer.  This is old school kids, actual paper and the back tab with the white out to correct.  I loved that class.  It took me years to finally enter the "Apple" world because their keyboard is so equally spaced it doesn't have the same feel as a typewriter.  Well after that tangent down the halls of BCHS memory lane back to the deep end of the ocean.

It's New Year's Day.  Yesterday I enjoyed two hours of bliss.  What did I do you ask?  The same things  I always do but the outside and the inside matched.  I sat on my balcony and didn't feel this electric hum that seems omnipresenct through my veins.  I didn't need to constantly monitor was I getting enough fluids with salt in it to help my blood pressure stay elevated.  I took a shower.  A long shower without fear of retaliation.  I went and brushed my teeth AFTER a shower.  See that is a lot of standing.  Normally I have this glass half full attitude and bring my clothes in with me to the shower.  And every time I get out of the shower towel around my torso bring the clothes out and throw them and myself on the bed.  I put my feet up for awhile, I cool off and I try again.  But not yesterday, yesterday I took a shower, got dressed and brushed my teeth.  I watched some tv, surfed the internet - I did nothing special but every moment of it was special - I felt like myself.  My way old back self.

The last few weeks or months haven't been anywhere near that.  A good day is sitting on the balcony and being good enough to be out of bed.  Then there is a long boring story about a blood treatment gone array, an IV, another IV and then my doctor giving something to help "thin my thick infected blood and help my kidneys detox better."  Well Saturday morning that is all I did.  By 11am I had used the W.C. about 15 times.  I called my doctor in a bit of a panic.  It did not feel like a bladder infection, no pain but constant and my head felt like it was spinning, I couldn't think or see straight.  My doctor called back about an hour and a half later…and when she did I said "Thank You." I don't know what you did to help detox my kidneys but it worked, I was miserable and now I feel better than I have in months.  I honestly don't feel sick at all.  I even got my hair cut by my assistant sitting outside.  Without counting the minutes til it was done.
My FB post New Year's Eve
10:59am first time in 2 weeks I don't feel a variety of symptoms - I will take this minute of peace and feel so grateful ! Cool and cloudy - blanket watching golfers ... it's going to be okay. Happy Blessed and Grateful New Year to All
And now today.  All I can do is tread water in the deep end of the ocean.  That phrase, kept ringing through my ears - yes that is what it feels like I'm not only treading water, trying to stay upright, I'm not just in the ocean - I am in the deep end.  The waves feel like they could take me over at any minute.  I have water everywhere that I can not drink but am so thirsty it's painful to look at.  It's a sea sick feeling of being thrashed around a body attempting to find it's footing but it can't - you are in the deep end of the ocean.  The only thing to do is wait it out.  You are starving but too tired to sit upright to eat.  Too nauseas to get food in when you do.  Your head is pounding or spinning.  One headset in with music to distract and then the counting.  I try and count backwards from 100.  Most of the time I get to 98 and get distracted and try again.  And all I want to do is sink into this ocean.  Sink and let it stop.  Can we go back to yesterday.  How can I find that peace and find it in this minute before I sink.  I feel Sophie inching closer to me, just enough to be present not too much to demand attention.  Focus, focus on that feeling.  That slight pressure that is calming.  Don't sink, 100, 99, 98, "River Lea the River Lea..100, 99, 98 …it's in my roots, it's in my veins, it's in my blood and I stain…the dog, the numbers the song…again and again.  Hydrate…sit up hydrate.  "there was something in the water and now that somethings in me and I can't go back…" Adele.  That's how I feel.  This illness is so deep in my blood in my veins I can't go back… phone is pinging.  I reply.  I always reply.  Too sick can't talk.  The feel better soon, the I'm really sorry, the check in later if you can.  Reply back - that takes every effort to reach that phone.

It's now 3pm.  I'm exhausted from treading water.  My head is blaring my body begging please stop - it's like being slipped a drug, it's disorientating.  Go back to yesterday.  I begin a meditation I use from a  session with a friend.  I imagine myself when I was about 8.  2nd grade. Yes it was 2nd grade.  My family went to visit my uncle and my mom's best friend in California.  My sister wore a baby pink gingham checked leash…that was not a typo.  Think it was in the abduction era.  But in this meditation, Cara, asked me to pick a place when I felt free.  That was it, the ocean.  The pacific dark blue cloudy day ocean.  My sister, sans leash, and I were wearing matching velour maroon with pink piping jogging suits.  My mom saved those, and I can't blame her.  They were adorable and it was a great trip.  Then Cara says to imagine that person that healthy person in my solar plexus.  I'm tiny but I'm still in there.  And try to stretch that little person and fit her inside this body.  Yes the sick part is big and looming and large, but that tiny, free running on the beach girl is inside and why don't we give her a little bit of attention.  I do that now.  I lie in bed, my head spinning my body aching thinking - scared.  I'm always scared.  Scared is this going to get worse- it always can get worse.  But I breathe and think of yesterday- that little girl was the big girl….she was in charge for 2 hours.  Not today, but try and find her.  Breathe her in…she is not in the deep end of the ocean.  She is on the shore, the cool shore with barefeet and running free.  That was real.  That was real when you were 8 and that was real yesterday.  And now right now the only thing to do is to be that wave and find your way in the deep end of the ocean.
Post Dedication:
For more info on Cara Lehmann / Reiki Master / Gifted and been a huge blessing and gift to me.
Cara Lehmann Web Link

Also to my parents, my mom planning amazing trips weather "stay cations " or the amazing out of town ones, my dad going with the flow, and my sister lol especially on that leash…xoxo

Saturday, December 24, 2016

Christmas Eve

The last time I spent Christmas with my family was four years ago.

Christmas Eve 2012 - Laughing
Christmas 2012 - So little
Thanksgiving 2012 - Newest Arrival
I was watching the Bucks game last night and the announcer asked the GM if it is difficult for the players always traveling during the Holidays.  And the GM said during the season every day is a Wednesday.  I couldn't agree more since I've gotten ill …everyday is Wednesday.

It makes me a bit concerned when I looked back at photos. My niece was born November 2nd 2012.  So I stayed in Milwaukee for Thanksgiving.  Then my mom and I flew to Phoenix so I could get some treatments and I flew back again for Christmas.  I didn't remember that, I needed to look at photos.  And to be honest I'm not completely sure, I'm trusting the dates from my iPhone.  It scares me a bit because that doesn't feel at all in the realm of possibility right now.  Sometimes I think I keep improving but then I wonder if I'm actually worse but I'm just getting better at this new life.

The first 3 years I decided to stay in Phoenix by myself for Christmas it was a massive relief.  It's the juxtaposition between traditions that carry on but I experience them in a completely different way.  The best I can describe is the grief that many carry during the Holidays when a place setting is empty.  You carry on, you focus on the new generation but there is an empty spot that can't be filled, it is endured.  It is filled with what was and the reality that the sadness is there because there was so much joy.

The Holidays had become something I endured.  I showed up for.  But I could no longer enjoy all my favorite foods.  I could no longer help wrap the presents, prep any food, help decorate the tree which to be honest was never my favorite but when you can't of course you miss the faux dreaded task.  Can't help clean up, the noise starts to get to me, lots of people many fighting off colds.  It's all right in front of me this amazing family and friends -all the memories of how it use to be.  And it's just too much.  So the first few years alone in Phoenix went quite well.  I have my dear helpers that make it festive when I don't feel like it.  I can FaceTime and enjoy from a distance.  It's really okay.  It's just like another Wednesday.

However, this year I couldn't shake that this is the new normal.  I think the first few years I convinced myself it was a blip…it was necessary piece of the puzzle to get well and get back to normal.  This year my youngest niece is 4, and she has no memory of me being at a Thanksgiving or a Christmas.  This year I just feel alone, but not really lonely.  This year the last week I have been so sick that getting to tomorrow as I said is really all I cared about.  Nostalgia would be asking for too much.

So I woke up this morning and was about to call my parents and started to cry.  And I didn't want to start my mom's day off with me crying.  It's early - it always gets better later in the day.  I don't feel as bad as the last 4, that's progress.  I will get stronger as the day goes on and will FaceTime with everyone.  But I just couldn't shake the Christmas Eve blues.  So I decided to call my best friend - and cry first with her and get it out of my system.  And then this happened….

I'm holding back tears saying hello and I hear all this commotion in the background.  
Me: "Hi, Where are you?" 
Steph: In between scolding her two eldest children, "We are at the mall in line for Santa"
Me: "That's right you do that every year don't you.."
Steph: "Yes and normally there is no line and I forgot that with the Packer game it's a mob scene…we've been in line 25 minutes.."
Me: "Oh so you're going to leave.."
Steph: "No we're staying…" Now she's trying to round up her two eldest that are for some reason with her at Talbots.  Guessing her husband and youngest are in the line.
Me: "Oh my goodness your husband is a Saint" "I called because I needed a good cry before I called my parents and am wishing I was home…right now chilling in bed feeling not great but not horrible doesn't seem all that bad"

We both were laughing…and see just like that it can turn around.  This is not the ideal Holiday for me.  It isn't even close.  But at the end of the day I have what I need.  I have a loving family.  I have food on the table…mind you the same limited diet but I don't have to check my bank account to buy it.  I have friends that make me laugh, listen to me cry, listen to me say…how did this happen I don't think I can do it another day.  I have an amazing dog.  I have helpers that are a second family and don't let me forget that.  

Yesterday I thought all I would want for Christmas is one day.  One day of my old life prior to this illness.  And it reminded me of all the people out there that would like one more day with those they love.  That is what I wanted.  One more day with someone I loved…my old self my old life.  But grief doesn't work that way; because one more day I would beg for one more hour, then 15 more minutes, then even one more minute.  But then that silly conversation happened with imaging Stephanie at the mall and the chaos and the laughing and I thought I can do this new life one more day.  It isn't easy, it isn't what I dreamed…but I always go back to that saying we don't know what is on the other side of the mountain.  And the moments I treasure would all be sliding doors different.  And at my best I try to switch my mindset to a tip I heard somewhere which is "I get to"...

I get to FaceTime with my family.  I get to escape the winter.  I get to watch the Packer game.  I get to sleep in a comfortable bed and wake up and open presents from people I love.  And in my most optimistic moments I get to see what this challenge and this illness will take me.  Maybe no where except that it's just another Wednesday and I made it tomorrow and that is enough.  More than enough.

As I am writing this my phone rang and it was Vasil, who use to drive me to the doctor before I got full time help.  Now he takes us to and from the airport.  When my mom left two weeks ago I tried not to cry and V gave me a big bear hug and said it's going to be okay.  This is how I am so blessed.  A few years ago when I wasn't well enough to drive myself to the doctor for the first time I called the Biltmore Hotel and asked for the Valet.  I explained I lived a block away and could they send a driver over to pick me up I was short on time and this was before Uber.  Okay let's be real - I wouldn't have probably thought to call Uber. And Vasil showed up.  He emigrated from Bulgaria with his wife.  Where he owned a night club and his wife was an attorney.  She now works at a resort and he is a driver; and he is always full of Joy.  So the phone rang and he asked if he could swing by and brought me a gift from him and his wife.  This is what I get.  I get compassion, and love and the gift of someone that one day took a sick girl to the doctor and became a dear friend.  The 5 minutes I prepped for a visitor and then the 5 that I used genuine enthusiasm while he was here has landed me exhausted…and I couldn't be more grateful.  This is what I get.

This post is dedicated to my two dear friends who lost their mother's in the last month. My heart aches because yours ache.  Your strength amazes me.   And my dear friend who tragically lost her nephew who was also my old friend and colleague whom I adored watching live loud and live love.  Whatever Holiday you celebrate may you get Joy.

Tuesday, December 20, 2016

Reclaim Part 1

This idea has been in my head for the last 3 weeks.  I had this post "saved" and opened and saw it was empty.  I guess that sums up the exhaustion.  Three weeks ago I reclaimed a bit of my old self.  On 24 hours notice found a flight out of Phoenix back to Wisconsin.

I'm too tired to give the story the time it deserves.  As I write this I had my first IV yesterday since I got back.  A chelation of EDTA.  Did I mention I hate IV's.  It's the third night in a row I've woken from a restful sleep with chills, or sweats, nightmares, abdominal issues.  It's the third night being home alone at night here in Phoenix.

But three weeks ago I reclaimed a bit of my old self, my true self; and that has helped when I've been up alone and scared I remind myself that she's in there.  That is who I am - not this illness.  The person who likes to make last minute flights and move forward.  Not be still. Capable.

Most days this disease wins, or at least it feels like it does.  When I'm asked the seemingly innocent  question, "so what have you been up to" I stare back at the questioner realizing we don't really live in the same world.  I have no way to answer that in a context that would make sense - I have been up to getting to tomorrow.  That is what I am doing right now…getting to tomorrow.

Wednesday, November 23, 2016

And Then This Happened….

Can you hear me?
I'm in California dreaming about who we used to be
When we were younger and free.
I've forgotten how it felt before the world fell at our feet.

In performing it's called breaking the 4th wall.  So I'm going to break down that wall in letting you all in on how I ended up going and then getting to see the Adele concert.  As I printed out the lyrics above, I realized how they resonated with me not about a former love, but of my former self.  A few days ago I said to my mom, do you think it's possible if I slept really really long I could wake up and it would be 1995 again.  When the world was at my feet?

A year or two ago my cousins decided for Christmas their gift to their mom, my aunt, would be a girls weekend.  The place really didn't matter as much as the idea to spend time together without the distraction of children, husbands, a get back to basics girls weekend to take time once a year despite the fact they both have three children and extremely demanding careers to take the time to be together.

My cousin had the opportunity to see Adele in Chicago last year and as she is a more die hard Pink fan went with enthusiasm but not thinking she would be blown away.  Her sister, the one with the talented voice in the family, who really missed out on American Idol type shows is more in my world of die hard fan.  So with only a few concerts left they quickly put together a trip to Phoenix…yes Phoenix in August - so clearly my home was available.  They were a bit nervous if their mom - lol who wouldn't be - could handle the heat…but felt it was worth the shot.  And then BAM…Adele put out the teary hoarse voice video that she needed to cancel her second concert (one that was already a make up) in Phoenix due to a bad cold….but don't worry she would reschedule.  Yeah, no worries if you LIVE in Phoenix, but rescheduling four days before Thanksgiving not really the easiest trip to make back.  

I called my cousin on Monday, knowing their mom had just traveled to see their brother in California, to see if at least the two of them decided they could last minute come out for the show.  It turned out to be a no go.  I had asked right at the beginning if they didn't go to let me know because I would attempt it.  I felt a bit uncomfortable; I did go to the Bodeans last year for half the concert, but the venue was smaller - the tickets far less expensive, but Adele…everything quite the opposite.  My dad also mentioned it - and said he didn't mind paying above market price, because he knew I wouldn't push the issue but wanted me to have the chance.  I had thought if they did come back for the concert I for sure would scalp a ticket and attempt to go with them.  They weren't coming, so it was me and Christine for our adventure.

I printed out the tickets and saw the word "upper" and my heart sank a bit.  The night prior to the concert my whole body hurt and I couldn't keep my eyes open past 9pm.  While I was in bed I kept getting little flashes of heat running throughout my whole body…and thought for once it feels like my body is "working" to fight something off.  This was different from my normal night sweats.  I just slept and when I would startle for a moment kept telling my body - well done - fight whatever it is off because you have a mountain to climb tomorrow.  I woke up at 8am and nothing felt right.  I immediately got a rush of heat and sweat up the back of my neck and rushed to the bathroom.  This is not good.  The body pains were bad, the rush of heat kept coming and the trips to the bathroom didn't seem to stop.  I called my friend and started to cry.  I think I have the "real flu" not my normal "flu".  The smell of coffee that Chrissy brought the smell I normally crave was vile.  I called my doctor's office - I had a previous appointment that I canceled to get to the show.  My appointment was still available to do by phone.  Around 10am I messaged my other cousin who was in town with her husband's family and said the tickets are yours - I can not imagine this turning around- and don't want to waste them.  She kindly said you have 8 hours rest and see.  By 11am I couldn't' get any food in but all of a sudden the smell of coffee returned to it's blissful routine.  Okay - so if I can get coffee in this is my normal sick not flu sick.  This may be possible.

At 2:30pm I had my appointment.  My doctor recommended 2 homeopathics - one in case it was the flu  and one if it was my normal flu.  If you think homeopathy is a joke, that will be until you are prescribed the perfect remedy and feel your body respond.  By 3:30pm I could attempt a little food.  I can't tell you how many times Christine went up and down the stairs by now.  

Since this illness, I have become a master at knowing my circumstances.  I am like the team they set up before a President arrives at a new location.  So I had called the arena and after a 30 minute wait asked about the handicap - no stairs seating.  Unfortunately they were all already accounted for - since it is first come first serve.  She did suggest I could come at 6pm and go to customer service.  However, I know I have about an hour before I start fading.  So that wouldn't be possible.  I then asked given our seats what was the best point of entrance…South.  Okay - check.  Then I asked what time did Adele start the performance - 8:15pm.  Alright. Got it.  My concern was to bring the walker or not.  Yes, that's a story for another day.  I need it more for sitting than walking.  But add to my claustrophobia - elevators don't work -and with the stairs to get to the seat - we would have to carry it to our seat which wouldn't work.  Also the entrance nearest to the seats was not close to escalators or elevators.  So all these things go through my head.  What is best of not greatest circumstances.

So back to the day.  I'm half asleep but body aches are so bad around 4:30 decide to force myself to Epsom salt bath.  Alright things are starting to turn around.  I get out of the bath.  Chrissy brings me chicken and rice and a salad.  I can eat this.  It is staying down.  I get to turn on the Bucks pre-game show which brings me a calming routine.  I look at Chrissy and say- how is this possible.  How - right this second I feel almost normal.  How does this happen every day?  Some days I never get that normal feeling - and I don't know how long it will last.  She looks at me and says I have no idea.  And if someone wasn't here with you all day they wouldn't believe it.  I said I know - I barely believe it.  Apparently I am currently the Phoenix rising from the ashes…time will tell.

At 7pm I am hungry again.  I hadn't eaten much in 2 days - this is a good sign.  So up and down the stairs again and a half of ham sandwich, yogurt and raisins.  I have arranged for Vasil to drive us.  This way at any second if I need to leave - there is no walk to a parking lot.  No me standing by myself.  I had also messaged him saying if at 7pm it looks impossible - my cousin is definitely out - the tickets are yours.  Vasil…who well again, another story - is so kind he said - we do the best we can - you can't go in we don't go in.  But we will try.  My sister texted…Goal 1. Get there Goal 2. See her Goal 3. One song.  Okay - yes I can break it down that way.  

We timed it perfectly. No traffic.  South entrance - walk in the usher says you have 5 minutes before Hello.  Golden.  Deep breathe.  Goal 1 down.  We turn to the right and the usher said - up two flights of stairs.  Okay - I can do 2 flights.  We get up the two long flights and it's the 200 level Suites.  There is a strong fish smell they must be serving that makes my stomach cringe…We being to hear the first words being sung.  The usher said - two more flights.  Okay.  I can do two more flights.  Chrissy now has my purse.  Two more flights - Mother F'er are you kidding me…the second level of Suites.  Oh sorry one more flight.  Chrissy looks at me…and I'm like what can we do - my heart is beating so loudly I can feel it.  We get up the final flight.  Pause at the aisle.  And like okay we did it.  Enter, Hello is blaring but I'm so lightheaded at this point this is feeling more like a dream.  The usher looks at our seats …says you are the top row.  I look up at the staggering steep steps - Chrissy and I lock eyes and I say - No F'ing Way.  I can not do one more step.

Oddly, I'm not discouraged -more like you did it. Goal 1. Goal 2. and kind of Goal 3.  I say let's just go back down, I saw some chairs outside the black curtains separating the venue from the walkways.  We can just sit and listen from out there.  So we slowly go down the steps…and at the bottom I look straight ahead and see the curtain on the left has the handicap sign.  And all the rules below it.  I read the "fraud" penalties and part of me visualizes this big mistake and I am being taken handcuffed out of Adele.  But the other part is walking straight forward.  I pull back the curtain, and there is a folding chair propped up.  This section has two "disabled" seats it appears plus one for their guest.  One an obese woman on the far left and the woman in a wheelchair the far right - where we entered hence the extra folding chair.  This is one of the "no steps" necessary spots.  I sit down - take in the last seconds of Hello.  Tears well in my eyes and I lean on the metal post next to me.  Chrissy is standing behind.  Then an usher comes from the other side of the metal posts and asks if I am allowed to be here…and through Adele belting out I say truthfully.  "I called, disabled was all booked.  I have a chronic illness and couldn't get here early.  I tried to get to my seats and almost passed out - and I promise you I will be lucky if I last for more than 4 songs." She looks at me - and kindness in her eyes says - okay.  
November 21, 2016
Chrissy and Me
The rest is a bit of a blur.  The song Remedy came on and it was too loud for my nerves to take.  So Christine and I went back out of the curtain.  I saw the Usher and tried to get her attention but she was dealing with someone with ticket problems and went back then to her post.  We hear Adele chatting away and I said to Chrissy mind if we go back in.  I take my seat and then the usher comes again, and my heart sinks and those handcuffs (melodramatic I know) come to mind.  And I said - I'm sorry I tried to catch you - and she said - no I wanted to let you know I talked to my supervisor it's all good - can you just move the folding chair to the opposite side so you aren't behind the wheel chair.  The gratitude and relief I felt I can't explain.  I was free…she sang one of my favorites - Water over the Bridge.  I soaked in ever moment of Adele yes - but more importantly being in the world.  In a place with thousands of people with thousands of their own issues and in this moment the kindness of an usher - the kindness of Christine and Vasil, my doctor, my friends that kept cheering me on, there wasn't one moment I took for granted.

This illness most of the time you don't feel like you are truly living.  You are existing until the next moment of relief.  And for an hour I was living.  It took a lot to get here.  It wasn't the same as heading out to dinner before, grabbing a drink, rather the necessary monitoring of myself to make sure I didn't put myself over the edge. I have learned it's always best to leave before I have to.  So I gave Chrissy the look - it was after 9pm - texted Vasil and we walked a few steps down and like Cinderella my car was waiting.  While we were leaving all the ushers at the exits said - you can't leave she has more than half the show left.  And I kindly said no this was perfect.  And then they kept persisting - not being able to reconcile this person who looked well leaving a sold out sought out concert.  So I finally said, I have a chronic illness, getting here was enough and everything else was perfect.  And I got a look of recognition.  Not understanding, but understanding this woman couldn't understand, she didn't understand but she got it.

Vasil had the biggest grin when we got into the car.  We got home, Chrissy took Sophie out brought me some ice cream and I collapsed wondering if that was all a big dream - or did that happen?  I tried to write yesterday but couldn't move.  And wanted to write while it was fresh.

I know how sad my cousins were to have had this big trip planned and the reality that it didn't happen the way it was suppose to was a gut punch.  I get it.  That is how I feel nearly every moment of every day.  Whether it was getting all dressed and then being too sick to make my niece's dance recital - especially since she has huge performance anxiety and I wasn't there to support her.  Missing every soccer game of my nephews.  Missing this amazing life laid out in front of me.  That is what it feels like every day - I do my best.  I made a promise to myself a number of years ago when it was obvious people felt guilty telling me where they have been - what they have been doing - I will do everything I can to encourage people to live loud, live boldly remember what matters.  I will never make someone feel bad about an opportunity they have and I can't do.  Joy is expansive - if I can have joy for their experience rather than sadness for mine - it helps me too.  I will say food is the exception.  Since food is life and it scares me that I can't eat so many things I do ask people from refraining from telling me about their meals.

 I have gotten good at missing all the things I use to love.  Maybe sometimes I make it look to easy. The reason I do is because most days I'm so sick that missing something is too far out of my mind. The other is coping, when I start to take in what use to be rather than what is my heart gets shattered in a million piecesWhen I'm my best self I remember I've had more experiences prior to getting sick than most have in a lifetime.  I am still one of the lucky ones.  But there are days that pill is hard to swallow.

When I attended Adele, all I felt was gratitude to my parents.  There is no way most CFS/ME patients could do what I did - because they don't have full time help, then a driver, and my parents give that so freely - they didn't care if I got half way there and needed to turn back.  That's not the point in my life right now.  The point is to way the risk and rewards and try to slice out these moments of living not existing.  It is bittersweet, when I had mentioned to Chrissy all of a sudden I felt pretty well, I said wow life was so much easier.  And being at the concert and knowing that was food for my soul for so many years - and this experience so different than when I was well was also hard to swallow.  But there was so much kindness sent my way - I would be a fool not to soak that in.  My best friend texted me the next morning - when I saw your photo I had tears in my eyes for you.  That is love.  I have an abundance of love.  I am desperately lonely here in Phoenix right now.  I miss my friends, my family but I can't dismiss the family I have created here.  Vasil, Christine, Ashley, my doctor, my psychiatrist….they see every day through the 4th wall and they root for every tiny achievement. Someday that is coming downstairs and others it is a glimmer of an old life. 

Adele you are truly one big blur of gold sequins.  But I was there.  I felt my cup vibrate, the crowd yell, the lights go up, your use of the word Fuck in casual conversation, putting on a goofy t-shirt over the sparkly dress.  I interacted with the usher.  I made it up the Everest of the steps.  And I put myself first- I wasn't embarrassed to say - yes I belong in this disabled section -and that is fine by me because I am here.  

Hello From the Outside
At Least I Can Say that I Tried

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