Saturday, March 11, 2017


Biltmore Sprite

I need to trim my fingernails.  I've been telling this to myself for about a week.  I look down and think my niece would say first thing if she saw me, "Heather you're nails too long."  Funny, most 4 year old girls you would think like long nails.  Not her.  But I don't paint them.  I don't like polish on my fingernails' toes always.  I'm not sure if it's the fatigue or depression keeping me from the nail clipper.  It seems like a momentous task. I haven't been out much.  Canceled the doctor on Monday; I was so dizzy or lightheaded the thought of riding in the car made me nauseous.  When I talked to my doctor by phone she said just try moving a little.  My mom's college friends were in town and they were at the resort pool; so with the steady resolve of going to a doctor appointment my care helper drove me the 3 minutes and waited in the parking lot.  I got a lot of smiles and cheers.  It felt exhausting and demoralizing and apathy all at once.  I put on a good smile, a red suit and fancy sunglasses and returned the feelings of joy that my mom's friends extended.  But I didn't feel it, I faked it...This use to be my domain; queen of the fancy.  Now I robotically made it here, get in the water walk a little, swim a little, and get out and look from the pool to the main entrance thinking you can make it back.
You would think it would elevate my mood.  I hadn't made it to the pool all year yet.  It seems to do just the opposite; because there is no momentum with this illness.  Just because I made it today means nothing for tomorrow.  In the evening my legs ache with abandon.  My body doesn't want to eat.  The food, same food I've been eating for 3 plus years now I can barely glance at.  I should be grateful.  I made it to the pool…the should's they get you every time.

I talk to my friend on the phone and tell her this feeling of depression is new and I don't like it.  It's my birthday, it is looming in front of me, I normally love my birthday…but this year turning 45 just reminds me that I thought this would be over by 45 not still in the thick of it.  And nothing feels luminescent as I glance forward.  I'm aging; which means my parents are aging; and my beloved dog is starting to clearly show the signs of her almost 14 years.  The next day I text the same friend and declare, "I'm going back to being a glass half full person, the half empty is a drag and it's the same amount of water."  Or something like that…maybe if I declare my optimism it will be forced to comply.

I was watching the pre-game show for the Bucks, and one of their stars Jabari Parker had just completed the second knee surgery in 3 years.  Means of his three year pro career 2 he will have been sidelined for…and he said "the glass is half full" and I laughed to myself.  Okay, you and I have that in common.  Then he went on to it being bigger than himself and God only gave him this challenge for a reason and he's going to come back a better player.  And that's when it gets to me…the choice to work hard and get better.  Now there are no guarantees he can work really really hard and maybe this second injury he will never be the player he could have been.  But the act of working; that's what has gotten to me…how do you work hard with an illness that punishes you for trying.  What am I trying for?  Have I gotten so use to being sick I don't even know how to be well?

All I know right now is around 6pm I got up and got the nail clippers and trimmed my nails.

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.

Disqus for Festzeit