Saturday, October 14, 2017

Welcome Back Winter

Today, Shelbie had to go up to the Teton Valley to find the perfect spot for a location photo shoot on Monday.  I took the day off from work and drove her up there and her friend came along too.  It was such a beautiful drive. 

The farther we got from home, the more I could breathe.  I love that within an hour from my house, you can escape into a world where pine trees and aspens kiss your forehead with the reaching rays of the sun; even on a snowy day.  It was so beautiful near the top of the Tetons.

Pine trees were made for snow.  I love how they carry the weight of  the snow, branches that were meant to bend but not break.

We could almost touch the clouds
We shared our view with these guys...

I have been working at a break neck pace throughout the summer and even though I am still so far behind, it was nice to spend some time with Shelbie and her friend.  I miss being with her.  We see each other every day but we never just 'see' each other.  I didn't realize how much I miss just being with my kids so today was a healing kind of day. 

We got home around dinner time and took Little Miss swimming.  Shelbie adores her sister.  The boys do as well but they couldn't be with us tonight.   They are so good for each other.  I'm glad that she can still be part of the kids' life even through the ups and downs and changes that happen.

 Tonight, her mom came as well.  Yes, to many it may seem odd that two ex-wives would be kind to one another, even spending time together. There was a day when I'm sure neither one of us thought this would likely happen but life is too short for contention.  It doesn't just happen.  It takes two people willing to let the past go and find some common, peaceful ground.  What I love is that Little Miss is surrounded by so much love her in life.  She has this network of caring, amazing people, all with her best interest at heart.  Little Miss has been good for me too.  So, it's forgiveness and peace for the WIN!

Little Miss, Shelbie and Shelbie's friend Yolo...


Thursday, October 12, 2017

Lost and Found

From September 29th, 2016, I wrote this on my Instagram page with the following picture....
"There is something so intriguing about the lost and forgotten.  The dying but not yet dead.  
To watch something come alive again is a fascinating, albeit overwhelming process
but therein lies the purpose. "

This was a lost and forgotten house I was asked to design in the Teton Valley.  It is a small home that has been in a family for several generations, I believe it was built in the early 1900's.  Two winters ago, a pipe burst and water filled up that home throughout the winter and spring.  It seemed that no one had noticed.  The entire house fell apart, mold took over, it seemed a total waste to the family.

I'm sure many discussions were had if the house was even worth salvaging.

So, the process began last fall.  I worked with a great contractor and together we made this house come to life.  The left side pictures were where we stripped the walls down to the studs to reveal wood that had been over taken by mold and grime.  We arranged to have every stud and brick blasted with baking soda and crushed walnuts.  It stripped off the old and made the wood and brick beautiful again as is shown on the right side.

Baking Soda and Walnut blasting

A view from the kitchen down the hall to the bedrooms

From there I measured the existing house and designed a plan to create a new space to allow this family the opportunity to gather again.  All the dashed lines are the walls we removed.

upstairs level
 The new main floor plan and attic plan

Look at it now!  It is hardly recognizable from where it began. 

Kitchen to the front door

Living room

Master Bathroom

This is the same littered upstairs hall from the first picture.

From the kitchen to the bedrooms

This house has become a beautiful retreat at the foot of the Grand Teton Mountains.  What remains are the bones of the house, the soul, the memories from so many tender family moments.

I love my job.  I love seeing the creation of light and space.  I love the possibilities, the way lines on a page can one day breathe life.

In life, I love to find the lost and forgotten and help them feel found.  I love to polish off the sharp edges, clean up the spirit, bring light to the dark corners of a soul and remind them and maybe even the world, that they do have value and they are worth the investment of time and tender care.

This house has been an ongoing reminder to me even an archetype, of the world in which we live.  So many people around us have been forgotten, a little tarnished; broken.  People come and go from our lives, our paths cross and weave into one another's journey and we either find the precious parts that retain their Heavenly value, or we can't see past the damage, the way life has bent them and misshapen them.

Find the souls that have been lost.  See the light that remains.  Feel after the bones of their soul and sit for awhile, witness the goodness.  It's there.  Lost but now it's found.

Tuesday, October 10, 2017

Today, we did this...

My kids reminded me of this last night and I knew I had to change my attitude this morning. 

Sam spent most of the night with the room spinning.  He spent most of the morning and early afternoon on the couch trying to keep his dizziness at bay.  It was only affecting him when he exerted any energy but he got up anyways and went to his 8 hour shift at work without complaint.

I couldn't help but think that I'm glad the nurses called yesterday to keep him on two more weeks of restrictions.  As hard as yesterday was for him to digest that news, today it made sense. 

Spencer made it home tonight.  He was able to secure two video jobs so he's here for a couple of days.  I'm just glad to see him.  It's hard to see him still sick but in his usual fashion, he shows up everyday, ready for whatever comes and doesn't complain.

Shelbie too, continues to power through her work day.  She has to stop to rest often and she is still having days with seizure activity that wipes her out but she has accepted this new normal and gets through.  We have begun the weaning of her driving privileges.  I let her drive very short distances in the neighborhood but anything longer, one of us will take her or go with her.  She has two really good friends who have been going to all of her photo shoots on locations.  It has not only helped in our driving situation but no one even asked them which is a tender mercy.  It just seems to work out and they enjoy watching her work and even helping with props and making kids smile.

So, I couldn't let my own kids who are constantly getting up and moving on, show me up.  I hobbled my way back to the gym on Monday afternoon and I made it there again today.  Most of my joints are taped and braced but I'm determined to not let this flare in my AS or Lupus be the end of me.  I did however, have to wear my statement shirt just because...I think I'm so funny.

Monday night at work, my boss was there late.  She is taking care of her husband who has advanced staging of bone cancer, so like all caregivers, she works crazy hours sometimes, to get the work done.  She was talking about her challenges and difficulties and how to manage when doctors say...'Well, your blood work looks great!' even though they are puking up blood and can't breathe...they get sent home.  We swapped stories and it felt so good to share each other's load and realize how much we understand each other. 

She asked, "Do you ever just feel trapped?"
"Trapped?  Do IIIIII ever feel TRAPPED?  Like a Chilean Miner!"

Sometimes, all you can do is laugh and then cry and then laugh-cry about your situation.  I guess sometimes all you need to do is show up.  Be willing to show up and make the best of it.  It is really hard for me to face the future right now but I'll give it my best.

On a bright note...I get to make a visit to the dentist tomorrow afternoon.  You know what that means don't you?  A little down time with some happy gas!  Yep...everything is going to feel just fine tomorrow at about 1 pm.  Ha ha...Just let me have 25 quiet moments...that's all.

Monday, October 9, 2017

Rules of life

Think back to when you were little.  It didn't take much more than 4 or 5 years into life to realize that you were separate from your parents and life presented itself with all sorts of rules.

At first, the rules were simple but hard all the same, because we are 4.  It takes a temper tantrum or two or three and several melt downs before we realize that we are different and separate emotionally, from everyone else around us and we have to play by the rules.

When a 4 year old is hungry, hunger is their whole world and they have a very hard time trying to understand how, in the midst of their melt down, you aren't hungry and melting down as well.   They soon learn that there are better ways to handle their emotions. They begin to play by the rules, obey and fit in to the culture around them. Soon, the world begins to make sense.

I usually play by the rules.  Playing within the rules is where I am pretty content and comfortable.  Sometimes, chronic illness changes the rules mid-game and then what?

Well, that's when it's easy to revert back to age 4 when my whole world is upside down and hungry and I don't understand why yours isn't as well.  Alas, in the end, life is experienced alone, if we're being honest.

Today, I am being forced to play by someone else's rules and I'm just not happy about that.  Our GI basically refused to send orders to our surgeon here.  She said it's too complicated and she doesn't trust him.  It's not like she was doing the surgery herself, some general surgeon was doing it in Utah.  I went back and forth with the MA about her response. I even suggested our surgeon would send all the tissue and samples to pathology in Utah so her people could examine it all.  After I was certain that the rising contention was getting me nowhere,  I said to the MA.  "Can you just listen to me for one minute?  I just need to be heard... Does it make any sense to ask a sick person to wait on a test for 2 months because a doctor just thinks finding any other solution for scheduling is too complicated?"

"No, that sounds like it will be hard." He said.
"Yes, I'm sure my son is going to have a really hard time when I call him to tell him you won't even begin to look for a solution until his scheduled surgery two days before Christmas and then I'm sure no one will be working through the holidays, so it will be mid January before any answers begin to surface.  I wish I had the patience to tell you and the Doctor just how hard this is actually going to be but you probably don't care."

We went around and around and basically, even if I bring him home to do the surgery, she won't even see him until after Christmas.  They won't make room in her schedule at all.  So, there is no getting around this.  I'm so miffed. Oddly enough, it was the GI doc, when the kids were little who made me leave the State of Utah and move all our records to Boise where we had an amazing GI doctor, until the kids grew up.

Right after that call, Samuel's Cardiology nurse called to check on him and schedule his next appointment.  Knowing his 4 weeks is up tomorrow, she asked if I would hold so that the device team could review some things with me.  I was transferred to a different nurse and they gave me the bad news.  Sam has two more weeks of activity and weight bearing restrictions.  They just aren't happy yet with how his body is settling in to the pacemaker.  She didn't give me any details and honestly, I was still so upset with the previous conversation, I didn't even ask.

My boys are not happy today.  I'm not sure who I feel more sad for...  I'm not happy with our GI doctor.  I want to try to understand where she is coming from.  I want to try to understand why she thinks it's okay to have 6-8 watery stools a day, every day, for months. I want to try to understand her but I'm struggling with that tonight.  All I want, is for me to be understood.  For him to be understood. I don't really care about what she deems as complicated.

Someday, I wish I could speak to doctors about what it feels like to be a caregiver of someone with a terminal disease or three people.  I wish I could have their undivided attention and then in the most concise and succinct way, make them feel just a fraction; 1/10 of what I feel in any given hour of any given day. And...while they are feeling the weight of that...make them work the equivalent of two full time jobs that barely makes a living wage for a healthy family but crap for a sick family but still manage everyone's emotional health, keep a clean house, pay bills, make at least two well rounded meals a day and all the other daily living requirements.  I wish they could spend a week with our family and rather than read the edited, censored version of our life, live it.  See the struggle, see how we rise above and see how we can also sink so low. See  how it all just drags on and sometimes in embarrassing ways.  To see it all and how beautiful and brutal and holy and messy it can all be.  And sometimes, it's all just a little too much.


Sunday, October 8, 2017

Thanks and Giving

A table runner I made from 2014's Thanksgiving
 Tomorrow is Canadian Thanksgiving.  It has always been a tradition that my family celebrates Canadian Thanksgiving.   We usually celebrate on Sunday because I don't get tomorrow off from work.

This week, I've been conflicted about doing it.  Late Saturday night, I decided to pull it together so, it was a modified Thanksgiving feast.  I made it all happen but the pies... but ya know, nothing says Canada or Thanksgiving like some good old fashioned Texas Sheet Cake! I don't even think they missed the pumpkin and I made the most amazing cauliflower which made up for no pumpkin pie!  Just kidding!  Still...I know that 'amazing' and 'cauliflower' don't typically belong in the same sentence but seriously, my people were fighting over who got to finish the last bits in the serving bowl.  I decided to forgo the typical cauliflower in a cheese bath...I steamed cauliflower and while that was steaming, I made a brown butter garlic glaze with dill and drizzled that over the cauliflower then finished it under the broiler with a generous topping of  fresh grated Parmesan cheese.  It's pretty amazing.  I think it made the whole meal!

Each Fast Sunday, I have my Wasband's nephews and nieces over for dinner.  I love that they still think of me as their aunt and that they enjoy being at my house.  The kids all get along so well and there is nothing better than at least one Sunday night with cousins and my house filled with laughter and family fables, and jokes and games in the living room, all night long.  They are just great kids. 

We are truly a blessed family.  There is peace in my home and even in the hardest of times, there is plenty of love and laughter.  Lots of laughter!  My home is our refuge, a safe place to land, where everyone is heard, loved, respected and cared for.  The greatest and best job I have is being a mother; a daughter of God.  Taking care of the people I love is my currency of happiness, without a doubt.

Today, we really missed having Spencer home but we will see him soon enough and I always miss being home in Canada with my family.

I love that everyone left with full bellies, and cheerful hearts.  I am thankful that I could do this for them today.

For the coming week, we will focus on continuing in the spirit of gratitude and giving and trying to increase our faith as we work through the challenges of the day.

Have you ever read the official (American) Thanksgiving proclamation?  I thought it was a beautiful sentiment and one to remember as we will have another official opportunity to celebrate a Thanksgiving in the USA soon enough.

It is therefore recommended. . . to set apart Thursday the eighteenth day of December next, for solemn thanksgiving and praise, that with one heart and one voice the good people may express the grateful feelings of their hearts and consecrate themselves to the service of their divine benefactor.

Samuel Adams
November 1, 1777 (adopted by the 13 states 
as the first official Thanksgiving Proclamation)

Happy Thanksgiving to my family!


Equal and Opposite

I had no idea this week would become what it has.

Equal and opposite.  In one week, I have witnessed how incredibly spiritual life is and how we are all connected and how divine this plan of life is, yet feel the same vastness and greatness in how human and flawed I am.   Both are equal in their profoundness yet so opposite.  It creates such an unique experience.  How do you carry in your heart and mind the grandeur of spirit yet feel the gravity of suffering?

I've struggled to know what to write after experiencing such powerful, personal thoughts on the state of this country but more importantly, the state of our own hearts.  I have had a greater, deeper desire to be more loving, more understanding, more generous in how I treat others, more patient, more Godlike eyes to see the stories within strangers. 

It's a difficult yet rewarding attempt in living life with a higher purpose.

In contrast to all of that, the challenges of health have been difficult at best this week.   Here is the recap.

Sam is emotionally stronger than I have seen him in months.  He has a brighter countenance and his heart, though in general terms, better than it was, is still struggling.  I'm not sure if it's that we took our focus off the irregular rhythms or they are improving.  I'm not sure if the other problems with his heart are no longer being masked by the bradycardia and that is what we are seeing and Sam is feeling.  Sam has proven over and over how resilient our bodies can be and adjust to even the most abnormal of situations.  This Tuesday marks 4 weeks post surgery.  It will be a day of reckoning...I am already expecting Sam to push his physical limits at the trampoline park. 

Spencer is in rough shape.  Just 10 days after starting his new job, he had to quit this past Monday.  Physically, he is not managing well.  He is trying to help a friend lay tile until he can find a more permanent position.  Our GI team finally called late Tuesday and said they had a cancellation for early Wednesday.  I couldn't get down there, so Spencer went on his own, with a page of notes of course, that I emailed to him that morning. 

He has started a battery of tests already.  He has to have a several scopes but because he has to have so many at one time with various biopsies, the soonest they could schedule surgery was December 15th in Salt Lake.  I don't feel like we have the luxury to wait that long.  I called our family surgeon...because we have one, and as long as Utah can get the orders sent on Monday, Spencer will be in surgery, here at home this coming Thursday.  Our doctor is making room, as well as the hospital. It will be so nice to be back at our local hospital and see the nurses that we love so much here. 

I am so sad that he is having to face this and suffering so much.  In addition to this, he has been sick with a terrible virus that has become bacterial so today, he was back in the hospital in Utah.  It breaks my heart that I can't be there for him.

The biggest blow came to me...It was only a matter of time I guess.  I've been complaining off and on about my own painful woes.  This week, I've struggled to use my hands and shoulder.  My mobility has been terrible, in addition to debilitating pain.

Friday morning, I lost all feeling in my left arm and my fingers were purple. It was all I could do to shower and dress myself.  It was a morning of tears!  After some early meetings in the city, I came home to see my doctor.  The cyst in my left wrist is back, he drained it a few months ago but he found upon closer inspection that my joint is nearly completely gone with calcification.  The same holds true for my shoulder.  He did some extremely painful procedures on both my wrist and my shoulder.  There was literally no space within the joint to inject the steroids.  He worked on each area for several minutes before breaking through the calcification.  It was incredibly painful.  I even asked if I could go home in the gown they put me in because I couldn't get myself dressed.

I laid on my bed and cried the entire afternoon.  I was a wreck.  Today hasn't been much better and though I can feel my arm again and my fingers have color, I cannot move my wrists without extreme pain.  I slept in my clothes and wore them all day today because life's too short to change when every bone in your body aches. I didn't shower, didn't put on makeup, I may or may not have brushed my hair.  I did manage to make a trip to Walmart this afternoon and managed to see every person I know there...of course, when you look like death, that's when you run into all your long lost friends. 

I was told that this day might come.  My Rheumatologist predicted 5-7 years before I would be in a wheelchair.  I have worked so hard to keep myself healthy but it has obviously not been enough.  I probably should have tried harder to find a way to pay for the treatment of $3000 a month to put the disease in remission.

Tonight, I managed to get myself in a downright depressing place, worried about how I'm going to play the organ tomorrow at church, how I'm going to work on Monday or Tuesday or Wednesday...How I'm going to keep providing for my family, take care of them, manage the stress of daily living.  I'm worried about how it is affecting my kidneys and heart.  If anything happens to me, I don't know what will become of my kids.

I suppose the answers will they always do.  Little by little.  Monday, I will hopefully wrap up the scheduling for Spencer's surgeries, get Shelbie's PET scan scheduled and if things haven't improved dramatically for me by Tuesday, I will start a more aggressive treatment.  What that will be, I'm not sure.  Hopefully it will be something to get me moving again and look less like an 80 year old.


Tuesday, October 3, 2017

Things that can't be counted.

Albert Einstein said, "Not everything that can be counted counts and not everything that counts can be counted."

You count the hours in a day, the days in a month, the months in a year. You can count calories, your money, your chickens, even before they hatch!   But what does all that accounting count for?

We count and manage the things that we can measure, the tangible things of life.  We tally the score and size someone up according to the numbers.  To count anything other than the concrete things we can see and measure, seems a lot like herding chickens.  We can say, "I love you THIS much!" and spread our arms out but what is that?  How much is 'this'?  Intangible things are often immeasurable, fleeting, circumstantial, seemingly small; a moment of joy here, a little bit of love there.  By not measuring the abstract, we remain in a state of survival, just getting by, fitting in to the numbers game.

I recently heard about the country of Bhutan and what I heard piqued my interest.  Bhutan is a tiny country that sits between China and India.  For almost it's entire existence, it has been a monarchy and a country that has barely survived.  The King, in 1972 was a 17 year old boy who inherited his position when his father died.  On a trip to India, shortly after he began his reign, he was asked about his country's Gross Domestic Product.  In response, he asked why people are so caught up in measuring the success of a country by something that misses so much of what is important.  He suggested that a successful country starts with happy people.  He started a movement called the Gross National Happiness which has been slow to catch on, with exception of Bhutan.

Over the next several decades, he took the country of Bhutan from a struggling to survive place, to a country of transformation. He learned to balance the material value of things and the non material value.  Just a few years ago, it became the newest democracy in the world and did so without retaliation, revolts, rejection, coos or bloodshed.  They have done away with the GDP and developed a matrix for measuring the intangible things of the country.

The young King learned to place more value on the people in the country than anything else.  He created the intangible conditions for happiness to occur or in other words...a habitat for happiness.  He developed a "currency of happiness."  He cares about how the people in his country feel about the way they spend their day.  He cares about their well-being.

As parents, we count the scores on the spelling tests and depending on the outcome of that number, a conversation about attentiveness, hard work, importance of studying ensues.   Parents count what they can measure.  They throw themselves into the tangible things of school.  Parents count the stats on a football field, baseball scoreboard, the dance ribbons and whatever else we find that measures the success of our offspring.

As humans, we continually measure one another against a yardstick of ourselves; how others measure up to our standards, as if that counts for something important, a documented success...or failure.

All this counting and accounting to keep things and people accountable has turned us into a distant, fearful, angry, disconnected society; adults and children alike.  There are more lonely people, surrounded by millions than we have ever stopped to consider.   Do you know how I know that?  We face more angry people in this country who lash out for reasons that make no sense; from food preferences to political partiality...Angry, violent people are lonely, scared people who have lost their way and sense of belonging in this world.

Just like a country stuck in trying to survive, a person can not be transformed until the things that count are being accounted for.  A lonely person...or in other words...all of us...are just trying to survive.  Very few of us have need to be concerned with Maslow's suggestion of basics like food, clothing, shelter; no, we struggle to the get more simple, loving things met...Belonging, Safety, Security.  That's where the rubber meets the road or better yet, when bullets intrude in the innocent lives of people passing us by.

So, we wake up one morning, roll over and check our phone, that keeps us so well connected to things we can count, and the color drains from our face when we read that over 500 people have been injured and nearly 60 dead, in a shooting spree by an older gentleman, maybe somebody's grandpa who is addicted to gambling because at some point, you will do anything, engage in any addiction just to numb the real feelings of isolation, sadness, fear, and loneliness.

On second thought, on some basic level, we are all starving.  My neighbor is probably starving for attention in the form of a visit...not a casserole. I actually don't even know her name. Do you have a  friend, the one you traded babysitting with maybe, who really just needed to talk but it was time for Little Miss to get to dance class so you rushed right off?

Welcome to your new world! Where everyone is running scared. Starving for something. Where no one wants to admit we all have an insatiable hunger to be understood.  Where egos fight for elbow room and edge God out.  Where a thumbs up suddenly means something valuable.  Where we send out smiley faces after patronizing posts because Heaven forbid anyone was unkind, yet passive aggressiveness rules the day. Where nothing you can count, counts at all. Count all you want but nothing is going to change.

One person does make a difference.  One person, who loves that one person who seems so angry, bitter, depressed, negative...makes one less lonely person in this world and a culture of happiness and love and belonging begins to evolve.   Why do we have to judge so harshly when we are all just trying to survive? Literally.

How many more violent outbursts, Facebook disputes, egotistical moves to gain one up from your neighbor will we watch and engage in before we can be counted on to change the direction; to begin creating a habitat of Happiness, a society of safety, security, belonging?

We don't need gun control, or pride festivals, or Black history month, or common core or a host of other things that set people above and apart.  We need more love.  We need to help each other see that we all belong to this thing called life.  We all belong here!  We all have a story, a history; something we want witnessed in some small way.  That's all it ever requires...small ways.  Small ways to really show each other we care.

Today!  Make something Count...That can't be Counted!!  Don't count your friends on Instagram or Facebook...go be a real life, in real time! It shouldn't take a sad massacre or natural disaster before we all pull together, yet here we are...again...waiting until the 11th hour to roll up our sleeves and get to work.  Let's count on each other!  Today.


Sunday, October 1, 2017

Hope and Healing

This weekend was one that many Latter Day Saints look forward to, a weekend when we can be taught by a living Prophet and Apostles of our church.   Each talk brought truth, light and a feeling of peace which is a sharp contrast to the commotion of the world around us.

I made a little refrigerator art of some of my favorite quotes from each speaker.  When the kids got home from Utah, we were able to review each talk.  If you would like a printable copy, leave a message below or text me, email, whatever, and I will forward one on.  It can be printed on 8.5x11.

This weekend was filled with healing too.  I was able to connect with a friend I don't spend much time with for lunch on Saturday.   Her call was such a great surprise and meant so much to me! We are alike in many ways.  In the evening I was invited to spend dinner with some ladies from church.  I am not a social animal, especially in groups but I knew I needed to get out and connect with someone.  Again, I was so glad that my other fellow, single mom in the working trenches of life called and made me go.

In between those two outings and overnight, I was caught off guard by passing a kidney stone or two or really, I believe it may have been a scale version of Mount Rushmore!  I thought I accomplished that task about 4 weeks ago when I thought I passed one but apparently that was not the real deal, just a teaser to the real, 754 mm stone I passed along with 7 of it's close friends. 

My kidneys have been hurting for so long, it has become something I accepted as normal. Friday and Saturday I was running a low grade fever and feeling crampy and flu-ish and pained in many ways but didn't think much of it.  About three days ago, I decided I needed to increase my water intake to see if I could get some of my inflammation under control.  I cleaned up my diet and managed to get about 100 ounces of water in each day.  I think that might have done the trick to clean my kidneys out but man alive!!  I had no idea just how painful a stone or two or three, bigger than 1 mm can feel.  Yikes.  I feel like an oyster.  I wonder how long they've been rolling around in there being irritated?  I should have kept them, polished them up, lodged them in a setting of gold!  Okay, that's gross.  Sorry.  But for real...I need to make sure I don't experience that again.

I'm kind of glad no one was home to hear me screaming like a baby and utterances that the Angel of Death would pass me by and I would survive to live another day.   And I did!!  Behold the power of prayer.

Anyways...I'm feeling better tonight.  No more fever and my pain level is back down to my normal level of constant pain I had grown to love and accept.


Friday, September 29, 2017

In the quiet

It's a Friday night and September is closing up shop and so am I least for the night.

I've had a busy day with three new client meetings and some serious deadlines looming for Monday.

The kids are all in Utah...all doing their own things.  They left yesterday so it's been super quiet around here.  I'm not at all use to being home alone with only myself to take care of.  It's a little foreign to me and not something I excel at.  My life has always revolved around the people I love, making sure they are happy and comfortable.  It isn't all bad, being alone, but there is something about having people to belong to, the warmth of another soul milling around to help you feel connected to something.  Someone.  It makes me wonder what will become of me when the kids have moved along in life and there is no one left to care for.  I try not to let those thoughts chase me for too long. 

In all of the quiet, I have been able to get a lot of work done.  I need to clear out some of these projects that are so close to completion so I can make room for the new ones.  In fact, I've had a three page 'To-Do list' I made on September 18th and I've whittled it down to just one page!  Finally!

But...the house is quiet.  Just the light at my desk illuminates the darkness, my favorite Claire De Lune  by Debussey plays softly.  I'm going to call it a night, maybe settle in with the books that sit on my nightstand, neglected; with words begging to be found.  As I sit here, putting this month to bed and preparing for the next, I wonder how we ever keep doing this.  I think about all the wishes I still have and hopes that almost feel like a distant fantasy that will only ever exist in my mind. I wonder if this is all I am meant to accomplish in life- working to keep up to the demands of this broken world.  Wondering if there is anything better I could be doing, should be doing...want to be doing.

And then I think...maybe in the quiet isn't the best place for me.  Maybe it's the chaos that propels me forward, these shadows in tow.

Thursday, September 28, 2017


Before I get to this post, a quick update on how our world is spinning, recklessly, out of control. 

Just kidding...

It actually feels like I have a chance to breathe a little.  Things are calming way down, as they always do, eventually. 

Shelbie is doing pretty good.  It has become evident that she has started reacting to her transfusions every week so that leaves us in a bind.  These are life preserving treatments for her and facing the possibility of an ER visit every week is daunting so in my spare time, I'm going to try to figure out how we can avoid or prevent it.  If we can't come to an acceptable solution then I think it makes sense to go back to doing the big, massive infusion once a month in the hospital.  When we did that, she was sick and in the hospital for one week of the month, not weekly.  We'll see.  This weekend, she is excited to see her favorite country band, Florida Georgia Line in Salt Lake, a gift I gave her for her birthday.  Her best friend is flying in from California to go with her.  She will hang out with Spencer and enjoy some fun she has not been able to have this year.

Sam's heart is still not in rhythm.  It's so discouraging.  Again, taking the pacemaker out is not an option but this was not something we expected.  His heart is rarely that beautiful 60 bpm I assumed he would always have.  He can be sitting at the dinner table and his heart just takes off to beats over 150.  They keep saying we need to be patient.  I have some thoughts on being patient with heart problems but I'll save that for another time.  Mentally, he is doing really well.  He has come to a better place of acceptance with all this.  He has almost finished the wall he started painting in his room...I'll post pictures when it's done.

Spencer is doing better too!  Not great but he's keeping some basic foods down- rice and toast.  I have him on a low histamine diet.  He is still taking the H1, H2 histamine blockers and an assortment of other vitamins and minerals to at least improve his crippled gut.  He Snapchats Sam and Shelbie and from that, I can tell, he is less gray, a little more color in his face but he is sadly malnourished.  I feel grateful for the way I was inspired on the weekend.  It seems to have stabilized the situation.  One of my chronic mom friends did a little research on histamine and mast cells and offered some good articles for me to read.  They cited that some heart medications can exacerbate the situation and sure enough, his heart meds were listed as bad for the gut.  Again...we can't just opt out of the medications to keep his heart going so it's a dilemma.   Spencer has been really busy with three amazing video production jobs that will soon be going National! I'm so proud of him. 


When I'm sitting at my desk all day, I listen to podcasts, TED talks and whatever else I can find as sources of light and inspiration.  I listened to a good one yesterday by Amit Sood.  Here is his recipe for getting the day off to a great start.

      Before your feet ever hit the ground...

      5- Name 5 people you are grateful for and send them a silent gratitude.  In this moment, include your 8 year old self and think of someone who has passed away who you loved.  Consider how blessed you are because of these 5 people.

     3- In the first three minutes you spend with your kids, your spouse, your friend, your co-workers do not do or say anything that attempts to change them.  Just love them. Listen to them.  Belong to them.  I love, love, love this!!

     2- When you encounter a stranger, for 2 seconds before you even open your mouth to speak, wish them well.  Consider them to be one of God's choicest spirits.  They too are on a journey and not all journeys are smooth these days, for anyone!

I love these ideas.

It's so easy to feel lonely in the midst of trials that never seem to end.  People seem to steer clear of you in chronic situations.  It's easy to feel sad and bitter when you end up on the fringes but this helps to change that perspective.


Tuesday, September 26, 2017

Thinking out loud

Let's talk about something other than disease and dis-ease...

Sometimes, I think out loud when I should really keep my thoughts to myself.  Especially at work.

I'm working on 4 major healthcare projects right now, from Architecture to the final touches.  They are spread out between 4 different cities and all a different specialty so it's been a great challenge for me.   One of the projects is for an orthodontist.  He is a pretty amazing doctor.  He will have a frozen yogurt bar in the waiting room, massage chairs for the moms and dads, indoor playground, iPad bar, and the list goes on.  The theme he wants is industrial/aged look with a strong theme of 'adventuring'. Empowering kids to think beyond the box.

As we were brainstorming, I mentioned that it would be cool to have old, antique doors suspended over the treatment chairs, with color changing LED lights flooding the space with the color of each patient's choice.  Well...he loved it.  The problem is, I had no clue how to pull that off!  As if that's going to stop a great idea so I went door hunting and found these beauties.

This afternoon, a guy from the construction company brought them to my house so I can clean them up and refinish them for the millwork company who will then add a heavy crown molding to frame each door.   This guy had a dog in the back seat of his truck.  The dog was strange looking and I wasn't sure what the breed was so I asked?

Again...I should have stayed out of his business.

Turns out it was a mix between a wrinkly Shar pei and a Pit Bull.  It had a wrinkly, cute-ish face.  The dog was hanging his head out the truck window and the guy kept saying, "Face in the truck!" of course the dog didn't really care what orders his master was barking at him.

 I said, "Is your dog friendly?"
"No.  If you get close to him, he'll tear your face off. I'm not joking."
"Oh!  Wow, what a nice dog."  I didn't really  know what else to say and I realized afterwards that that wasn't the right thing to say at all because that is not nice!  I didn't say it sarcastically which is hard to imagine, I know!  These days, I just don't always get my emotions right the first time!

Then...the guy says, "Here, I'll let him out."
"NO! I mean,'s fine. (Trying to act calm but I'm not calm about dogs that want to use my face as a chew toy.) He looks pretty happy right where he is."  Not that my face is such a great asset, let's be honest, I'm still single... but I'm really attached to it and I kept thinking about the millions of dollars I have spent at the dentist this past decade, so I didn't want that hard work wasted!  The guy totally disregarded what I said!  So, now there's a wrinkly pit bull running crazy on my driveway and I'm not sure if I should pet him or cover my face.  I'm quite certain Pit Bulls can smell fear and I'm not sure about Shar pei's. Inside my head, I wanted to lay on the driveway in the fetal position rocking back and forth screaming for help.

Thankfully, I didn't have to resort to this behavior.

I was so glad when that moment ended peacefully.  My little 'pit bull' was taking a nap so he couldn't even protect me!  But if he was outside with me...that Pit Bull would have wished he had kept his face in the truck!

People are crazy and I should not think out loud because this weekend, I have to figure out how to make these doors look cool!


Monday, September 25, 2017

What I Know For Sure

This post is about what I know for sure!

  • Life is hard and getting harder.  I have I mentioned this before?  Only about a million times I think. 
  • Lupus is horrible and so is Ankylosing Spondylitis.  I'm not getting a handle on things and today has been a miserable day while I tried my hardest to work and appear like I'm enjoying a pain free life.  By noon today, I couldn't feel my right arm and I couldn't move my left wrist.   I weaseled my way onto a booked schedule for a massage.  The girl said, "I can't believe you are moving. Do you have a stressful job?"  ha ha..."Yes and Yes."  All of it...enough said.  I don't usually cry over pain but it's getting unmanageable. She was able to get the blood circulating back into my arm so it's slightly better.

  • I have officially reached the stage in life when I can do nothing but have faith and pray, this I know for sure.  I have prayed continually over Spencer.  Still no word from our GI but the over the counter medications I was inspired to tell him to take seem to helping him get a little bit of relief.  He has been taking an H1 and H2 histamine blocker, a probiotic that my friend with Crohn's suggested he try (it costs about a half a million dollars), Omega 3, B6, Vitamin C and L-Glutamine.   My theory is that he is full of inflammation and an increase in mast cells.  I learned that people with faulty autonomic nervous systems can also have a syndrome called MCAS  (high mast cells).   I know that lack of stomach acid, inflammation and abnormally high mast cells can cause that severe of food intolerance so that's what we are fighting.  The only food he can keep down are Pixie Sticks...straight up sugar.  It's probably far more serious than what I'm guessing but until the doctor calls back, this is all I know how to do.  He said he feels it is starting to help a little.  Here's praying.  Today and Yesterday, he kept white rice and toast down. I worry about the health of his pancreas...
  • I know for sure that it takes no effort whatsoever to go from confidence and faith to shear and total fear.  It's so easy.  There is probably nothing easier in life than jumping to conclusions and panic.  How fun!
  • I have a friend who isn't a member of my same faith but we have the best visits and conversations about spiritual things.   He often inquires about a doctrine of the church and says, "Teach me about this." Last week, he asked me to talk to him about my thoughts on agency.  This morning, in my continued studying about agency, I came across this thought..."We need the mortal experience here.  It is in the affliction that we are chosen."  "God does not spare us the conflicts but he consoles us in them." Todd Christofferson.   I know this to be true.  I also know we are having such an amazing mortal experience!!  (This is only to be read with a little bit of sarcasm.)  Honestly though, this was a good reminder today that all the struggle, if we struggle well, will be worth something in the end.  Sometimes, all you need is a little change in perspective. 
We are weak and tired and just muddling through but we will continue to hold tight to the belief that this is all for our experience Here to receive more There and this is what I know for sure.