Thursday, October 19, 2017

Staying engaged

One thing that has always bothered me, as we have journeyed through chronic illness, is the way we connect with others; or don't connect with others.  It's always been challenging and frustrating and irritating.

What I often hear is, "Well, I know I can't complain because you have it so much worse!"

Or, they ask how we are doing and after I wrestle in my head about what version to deliver, the sugar coated one or the closer to reality one, they say, "You know what happened to us?" and they proceed to tell me all about their latest battle with whatever.  I seriously listened to over three hours of someone else's health crisis this past week. We didn't connect on any level!  It was the most depressing conversation I've ever had...probably much like this blog has become!! Depressing!  Anyhow...

I never really know how to reconcile either of these scenarios.  I try to listen to them but leave feeling more lonely than when the conversation started.   I don't like comparing crosses because everyone has something hard going on in their life and our daily dealings with adversity are not worse than anyone else's.  Just different.

The second exchange feels more like a battle of one-up and I don't like that either.  I never feel like I need to compete for the worst life.  I don't want that title!

So, this week, I was listening to a man named Brady Wilson on a TED talk and he finally made sense of this for me.  I've been thinking about it all wrong.  We all want to feel connected.  Sometimes, the only way we can feel to do this is by sharing a similar story.  However, what we really need to be doing is investing in someone's story.  Instead of trying to find a common thread to stitch together some sympathy or superficial empathy, find out what, in their story, matters most to them.   Of course, this kind of interaction takes some time and investment.

He explained...

When we truly connect with someone, oxytocin is released and that increases our sense of trust and bonding.

When someone helps us see the possibilities in impossible situations, dopamine is released and we experience a renewal in motivation, creativity but most importantly, feel valued.  This is life altering information!  My biggest battle in this whole affair is feeling like we are backed into a corner.  There are no earthly answers to the problems we face.  There really aren't.  I understand that.  We are truly living on Faith and a Prayer.

I've had moments, when someone just lets me dump the contents of my tired mind, and together, we watch it spill out, all messy.  Even though, the answers don't come, sharing the worst feels less impossible. There is something about that process, after I get over feeling embarrassed and weak, that renews my hope in making it through another day.  It truly does renew a person's motivation to keep going.

Finally, Mr. Wilson suggests that when we have agency and someone believes in us, serotonin is released and we can begin to make progress.  I'm not exactly sure yet what that looks like but maybe the progress is just that you manage to keep going.

My favorite quote from him is, "People rarely leave your presence neutral.  They will leave engaged or not."

To me, this is even the best parenting advice too!  Imagine if our kids felt connected to us?

I hope I can do better at investing in the people around me.  I've certainly not been doing a very good job of that.  It's hard to put yourself out there when you have nothing but hard things to report on so you withdraw a little and little by little, there's nothing left of you; just a shell of who you once were, if you can even remember who that was.

I've been doing some thinking this week, trying to calm down after a disturbing and frustrating last week.  It helped to step back for a bit.  I was so bugged when I heard that President Trump cut off subsidies in the health care exchange.  I just had to shut down any connection to social media, I think I spent one solid day in tears.  I have since heard that maybe Congress fixed that but honestly, I'm scared to look.  I have one more week in denial before I have to face the insurance debacle head on and find a new company who is willing to take my every last dime and then some.

But then, I heard this scripture from Psalms-  "In the morning, I will order my prayer to Thee and eagerly watch."  So, for this week, I'm trying to eagerly watch and stay engaged.


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.