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Lymphedema follow up.

2/28/2020

3 Comments

 
      My last blog post was 12/04/2019  and it was two days before i had lymphatic bypass and lymph node transfer done at the University of Chicago.   Many of you know the long story leading up to that but I have been getting a lot of people asking me how is it going?  

I have to say i have been a bit disappointed.   It was a hard surgery and for 4 weeks i wrapped my arm like i was a mummy and my arm was much much better in terms of volume.  I could not wait to STOP wrapping and assumed that was the end of it.    Get a sleeve and move on .    NOPE

I have become an expert in Lymphedema and it is a bear of a problem that is so not understood.   

Amazingly i have found two people here in the Grand Valley that have chosen to be experts in this field.  I did not know they existed.  At first i made a commitment to wear a compression sleeve for at least 6 months.  It does not seem to do much but I wear it.  I have spent about $1000 dollars in garments.  Two sleeves for daytime and 1 for night time.  I have been discouraged because once i stopped the enormous wrapping that did not allow me to wear clothes ( for 5 weeks). the swelling just seemed to return.  It is better than it was but it is now where i hoped it would be

This disease is a beast.  It is chronic and progressive.  I am so grateful that my case is milder than many .  Doctors do not know about it.  Insurance companies do not know about it.  

  I have returned to full on exercise and i am grateful that i have strength and flexibility.   My husband thinks it is improved but i am not convinced.  

Today i met with a massage therapist who is very well versed in lymphedema and she gave me so much hope.  Tonight it feels sooo much better.   What i realize is the surgery was not a fix .  It may help but i still have to maintain the practices of decompression and manual lymphatic massage.  ugh.   

It also is not just about fluid but about the inflammatory response that happens and I am learning the complexity of this disease.  interestingly for the first time there is a medical treatment ( medicine)  that is showing promise.  mucinex (guaifenesin)  of all things. I am not a person to take medications but i am starting it tonight because as i understand the trapped fluid becomes thick and gelatinous and will not move so this may thin it and help it move. 

I am so appreciative for those that have reached out to see how I am doing. It has been a bit discouraging but what i Know is that there is not a cure but a movement in the right direction.  I am committed now to doing this manual lymphatic massage therapy weekly for a while.   Of course it is not covered by insurance but so it goes.  

I am grateful that i have found a couple of local people who have chosen to be experts in this field.   I am also grateful that I have full range of motion and strength of my arm and that I do not have this in my trunk or legs which many do.   I am also thankful for all of the people here that have supported me and reached out asking for an update

No it was not a cure but a movement in the right direction and i realize the long term commitment i have to make , mucinex, sleeves. massage therapy and maybe future surgery, yoga and whatever may come.   we will see...

This is an art site but ...  it involves other important things too.  xo


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3 Comments

Late night Southside

12/4/2019

2 Comments

 
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I have arrived safely in my airbnb in Hyde Park Chicago.   As many of you know I have been referred by my favorite Grand Junction plastic surgeon to a surgeon here in Chicago.   Dr Chang is one of the experts in the exciting new procedure of micro lymphatic surgery.   

I have lymphedema from the lymph node resection i had for breast cancer 7 years ago . It has created some seriousl health challenges and I have done all the recommended conservative measures to try to treat it.  . After appealing Rocky Mtn HMO for the last year, I was able to get them to approve part of the surgery and there is a portion that i will be paying.   The surgery is scheduled for this Friday am.   check in time 5:30 AM.  It is predicted i will be in the hospital for 3 nights

So today i started my travels to Chicago.   I had some anxiety because often the route from Grand Junction to Dallas to Chicago ends up with some serious delays or  turnarounds.    Tonight the travel was on time,  planes we not full so there was  ability to spread out and I arrived in O'Hare at 10:30,  half our early.  I was on a roll.  Got my uber.  Only took about 40 mins to get the the air bnb as there was no traffic and he dropped me off at the airbnb.  Nice looking brownstone.   

Now this is southside of Chicago.   But near the University.   I know that the southside can be sketchy.  I was so proud of how smooth everything was going.  The only problem i had was that my cell phone about died in the last flight but i was relieved the Uber driver had a charger.  Only problem is that as i got out of the uber the phone totally died.   It did not seem to be accepting a charge.  

I had my instructions.   I put the code in the box and the gate opened. I could see an apartment that was all lit up that was sure to be mine.  The door was locked and I was trying the codes but they would not work.  I looked in the streets and in the nearby apartments and being after midnight there was not much action.  an occasional car would drive by with a black man or woman.  I really needed help but noone would have anything to do with me.   I started freaking out If i could use my phone to call the manager of the air bnb i would be all set but there was nowhere to charge up.  

Feeling desperate i remembered that about 1/2 .a mile away there was a McDonalds and a gas station.  I walked 3 blocks north and a couple of blocks west and then had to go under the train tracks.  Keep in mind it  is 12;15 am ish and this  is  southside chicago and i am walking with a purse with a wallet and credit cards, a back pack with an  imac and iphone . 

  I finally got to the mcdonalds hoping i could charge my phone there but it was drive through only.  I am not racist but there was not one white person anywhere.   I was so desperate for help i went up to a couple of car windows to see if they had phones and they just shook there heads and would not open the window of their car's.  

 One lady said to go over to the gas station.   When i tried to walk up to the drive through window to ask for help the lady said stay away, back up and don't come any closer on a  loud speaker .  omg crazy!!!  So i went to the gas station across the street  and there you also could only go to a drive up window.  you could not go in and i tried to ask several people if they had a phone i could use to call my airbnb manager.  All i got were nods of no. 

I have to say i was terrified.   i had dry mouth and i started to walk the 1/2 mile  back to my airbnb.  It is a beautiful street but there was no sign of life and i had a dead phone so i could not contact the owner.   I started to think i may be sleeping on the porch of this attractive building.    When i got back to my building i saw a car sitting out front.   I approached her drivers seat window and told her it was an emergency and that i needed to get in my airbnb. 

 She did not know the owner but she did know that it was an airbnb and she CHOSE  to  trust me and offered to let me use her phone to get the right directions.   Soon i was safe inside my cozy place. 

That was seriously scary.    I realize in retrospect i should have stayed at the airport until my phone was charged but my uber driver had a charger but it did not seem to charge my phone.  walking back from the McDonalds i was praying to God to send me help.  I don't think I have every felt so alone and unable to find help.   

The kind black woman in the car trusted me and she helped me.   
she was so kind.  In fact she committed to stay until i was in the apartment . 
I have never felt so out of place and isolated in a city.  Granted it is after midnight

It is now 2 AM and i am in my cozy spot with a nice glass of Merlot feeling the need to document this incidence. 

   I was truly scared and did not know what to do
Grateful to God for hearing my prayer and sending me that kind woman

here safe and sound and comfy .  Mapping out my walk to the University of Chicago ( via President Obama's home and barber shop)   tomorrow for my preop appointments and the i plan to walk to Jackson Park to see the Osaka Japanese gardens. 
Wow what a trip tonight was .  The fear of possibilities   and impossibilities.  I have never felt like i was so out of place in my life. 

a white girl carrying a backpack and a purse and an i phone and iMac computer with credit cards.     lost and helpless. in the southside of chicago.   I truly felt what it felt like to be a total minority and i was vulnerable.   

God, thank you for sending that sweet woman who was willing to just let me use her phone so I could get indoors.  

Moral of the story,  if you are going to the southside,  have your cell phone charged before you get there.  

The sweetness and safety i feel in this condo tonight is making is a Godsend.  I am comfortable and relaxed and as it approaches 3 AM. i must find rest.  

Love to you all    

Stacia













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Gratitude

11/28/2019

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It is Thanksgiving.   One of my all time favorite holidays of the year.   

I has been small and quiet.    I am on call so close to home .   It was Kelly and Lucas and I.  At first i felt very sad about that.  But after talking to my mom and my sisters and my daughter Hannah who i will see in a couple of weeks and Keenan who is hoping to arrive tomorrow... it is all a blessing.  

This morning i went to gratitude yoga and It was the most perfect way to start the day.   It was a very physical practice with alot of balancing poses.   It was also a very emotional practice for me.   Thinking about gratitude and what is beneath that.   For many as well as myself there is alot of messy stuff.    Like the forgiveness that you wish for for that thing you said or did.   the grief for that person that has not arrived at the family table.  and the tendency to feel lonely for those you miss deeply.  For that loved one who's health is failing that that empty nest that is not empty :) .   But Lucas is at the table and for that i am grateful.   

 Matt encouraged us to look at those feelings.  the grief, the sadness, the regret and the resentment, the pain and the loss.   It is about being human and it allows us to feel that we are alive.  

Our experience with gratitude and grief and sorrow is ours.   It is unique to each of us and it is what we as humans are obliged to feel.  It was so amazing to sweat and to bow and to reach for those feelings and to take them in and let them go and to above all else be grateful for those experiences.  And how grateful i am for the ways that my body carries me.    My body has been so good to me and my health is vibrant.  

today has been a beautiful and simple thanksgiving day.    My cup is so full at the moment.   

Sending love to all of my friends and family.   This is thanksgiving 

May we feel balance in that which we give and that which we allow ourselves to receive

With Love,

​STACIA

​



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The lotus

10/3/2019

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It has been 6 months since my last blog post and i have not been super active at painting or posting during this time.  I wanted to share this painting that i am completing .   It will be hanging at the Grand Valley Yoga Festival this weekend in Palisade.   My dear fellow yogis and friends have orchestrated this second annual festival out of passion for yoga, for community and for the tragic rates of suicide in our part of the state of Colorado.  Suicide rates in this Grand Valley are disheartening and heartbreaking.   

All proceeds for this yoga festival go to suicide prevention.  I am so happy that I was asked to provide a painting to hang at the festival and it will be in the silent auction.   This is a painting about resilience.  It is very large 48x60.  It is a lotus which is a sacred flower in yogic traditions.   
So what is it about this mysterious blossom that people find so enrapturing? Its colorful bloom is an obvious suspect, but the lotus also has a life cycle unlike any other. With its roots based in mud, it submerges every night into murky river water, and—undeterred by its dirty environment—it miraculously re-blooms the next morning without residue on its petals.
Although cultures have their own interpretations of this daily process, there is a general consensus among ancient texts that it symbolizes spiritual enlightenment and rebirth. The lotus stunned people with its ability to dip into the grime and revive itself unscathed—an incredible daily cycle of life, death, and a sudden immaculate rebirth that can only be described as spiritual. It is no wonder the lotus is associated with such celestial symbolism—the flower simply defies logic.

I pray the essence of this lotus and the resilience of blossoming from the mud can trickle out to those in the community that feel hopeless, beat up, defeated.  There is always the potential for rebirth and resilience.  May we all support those that need us.  May we recognize those who are in need of support and inspiration and may we have an impact on the rate of suicide in our communities and beyond.  

thank you for tuning in .  Thank you to Elizabeth , Bryan and Lori for asking me to be part of this amazing festival 
xo
love
stacia


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speaking your truth

6/6/2019

1 Comment

 
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Do you sometimes feel a heaviness in your heart?  Is it hard to talk about the hard stuff?


I have and I do.   It is for me. 

  Today I came home from work and then a transition meeting for Lucas.  I feel there has been an assumption that since Lucas was in high school he is done growing.   I am not referring to physical growth but to growth in comprehension, expression and skills.  I do not agree and feel that he needs a more therapeutic environment then the one that he is in .  They need to expect things from him and encourage him. I believe he is capable of ongoing growth.

 Transitioning him next month to a new program will inconvenience us and our work schedules but I feel he deserves the chance to grow. 

I came home with a heavy heart.   Until i talked to my dear friend Alane from Maine.  Thank you Alane for listening with an open heart which you always do. 

There have been a few things that i have kept as a deep secret for many years. It is very difficult to me to speak about the things that are the most painful to me.  I am not sure why.

Several patients presented with "things" that dug deep to my heart and feelings today.    There is a reason.

The last year has been difficult for us.  I am going to share it despite my best reservations. 

Our beloved Keenan has struggled with serious addiction.  Several years ago he came to us needing our support and we brought him in to our home.  He was respectful, honest and SO helpful to us in terms of providing help and freedom for Kelly and I.  We were able to go to Italy , took several trips to Mexico and Florida and  had other weekend getaways.    

Keenan has always had a very special bond with his disabled brother.  In fact i heard from God that Lucas is in Keenan's life for a very important reason.  

Well Keenan tends to attract people of need and he met a woman that was a hot mess. We let her live with us for " a long time" and  she was a perpetual victim and was quite frankly crazy.  It turned out Keenan and she had an encounter that did not go well and he was charged with domestic violence.   He does not have a violent bone in his body and to this day I know that she lied.  

we then went a year or so with lawyers and probation and clean U/A's until he relapsed and failed drug screens.  It is part of the disease.  He chose to go to jail to most quickly get out of the "system" which in my opinion should not be considered a "justice system."

   While in jail for 6 months he ate bologne as his only protein and never had a fresh piece of fruit or vegetable.  26 cents per plate per inmate.

 We could visit him but only from computer to computer.  He was not treated as a human being and there was nothing therapeutic about it.  He had no guidance about transitioning back into life, the community .  They also had taken him off of all of his medications!

This is my son, that i love . history of heroin addiction.   Off of his replacement meds for 6 months and feeling overly confident.   several weeks ago he came to us saying that he thinks he needs to go back on which he has but it is a very slow process.  We learned long ago that within the disease of addiction , relapse is to be expected.   This for me is soooo hard .  

Today I met with several patients seriously battling drug addiction.  I see an epidemic of depression and anxiety in our young people, as well as addiction and suicide 

I do not have the answers but i feel non judgement is key.   I try so hard but sometimes get so frustrated and angry.  I pray for my son's happiness and health and for all those who struggle similarly.   I have been feeling that holding these secrets is not about being authentic and that is what i really strive for. It has been a difficult year in many ways. 

 But the beauty supersedes.     throwing this whole thing out there to the "world" is a big deal but i don't want to NOT talk about the truth.   It is time to demystify and be authentic.   Please pray .  My prayer for Keenan is that he learn and feel his true value.



It is life. it is love, it is sadness, it is sorrow, it is funny, it is ridiculous, it is incomprehensible, it is so beyond... but it is life.

xo
Stacia




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so much more than we can possibly understand

2/18/2019

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The wedding was totally indescribable.   We were invited by the uncle of the groom who owns a tailor shop where we had jumpsuits made when we first arrived.   Somehow we made a connection with him.  It started when he asked us what we thought about Trump.   I will not go into that further but it started a conversation that lead to a friendship and an invitation to an Indian wedding.   The three day event and invitation to stay in a luxury hotel/palace will never be forgotten.  The colors!!!! There are many pictures on facebook and instagram if you have not seen. 

  This trip to India has been the most exotic trip i have ever taken.  I have met people from so many different cultures.  We have had intimate conversations with Hindus and Muslims, Israelis, Scandinavians.  I love how open they have been to discuss their beliefs and perspectives.  Each have their own worries, passions and national issues of concern.    My mind is open to the many different beliefs and practices that we as humans have.   More than ever I see the thread that we each weave through this majestic tapestry of this earth we live on.  

I am struck by the human condition that has so much more in common than not.  I know that most want peace and want to discuss the issues and the world with hopes of union.   We all breathe and fear and strive and hope to see dreams that come true.   The connection that we feel with so many that we have intersected with is to me a gorgeous thing.  

Today as we drove a motor scooter through the countryside of Goa India we saw people working in the fields, standing at the wayside market shooting the breeze, sweeping the walkways, tending the storefronts.   We drove through the jungle and marveled at the coconut groves.   I love India.   It seems to bring front and center the best and the worst of humanity.   This is a beautiful place. 

Last evening I swam in the Arabian sea as the sun went down in front of me and the almost full moon, the one we all share, rose up behind me.   We then went to dinner and had a beautiful greek salad and wood-fired pizza.   We were told to avoid raw fruit and veggies which we have generally done.  The salad was beautiful and carefully cleaned in mineral water and it tasted divine.   One of my biggest fears was tiring of indian food and missing pizza.   That fear has taken a back seat and the indian food has grown on me though we do seem to find pizza that is  good here and there.   The seafood and coconut curries in the South of India are soooo good.  We were primarily vegetarian in the north.  The chai and tea is such a huge part of the culture here and we have managed to find very good cappuccino as well.  

We were planning to head further south to Kerala after Goa but have decided that the travel time is not something we want to do so we are staying in Goa for an extended time before we finish in Varanasi.   

We have fit in some meditation and yoga but not as regularly as we had hoped and the painting has been minimal but i feel my inspiration brewing for when i return home.   We have had weekly Ayurvedic massages ( so incredible and cheap) and are scheduled for our 4th one this evening.  

So far we have stayed well other than a minor cold that i got and gave to my sister.    Our stomachs have fared well ( fingers crossed!)

My sister Cori has been the best travel partner ever.  We seem to have several things in common. A love of adventure, narrow roads where treasures are around every corner, really finding the off the beaten track spots , comfort but not luxury , a good nights sleep and most importantly seeing that which is real India and interacting with the people.   Yesterday as we were speeding down a country road on our scooter Cori said to me  " memories to last a lifetime".  Our mother would have been horrified a little as we weaved our way around busses and cows and other scooters and our father smiled down from heaven.   The other quote of Cori's that I carry with me is when i said to her "what is going on?"  which we have said oh so many times and she replied " so much more than we can possibly imagine".  

India has a way of really making you aware of that precious facet of life.  That beyond what we we see and understand. 
There is so much that we cannot possibly imagine. 

The month is flying by.   We had a driver for the first couple of weeks which was a God send.  Now we are on our own and i think are doing a beautiful job of navigating this crazy beautiful place.  

So many times i have thought to myself pinch me.   



With love, 

​Stacia and Cori



​
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India- week 1

2/8/2019

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We arrived in Delhi one week ago.   The travel to India was smooth and relatively easy.  I think i travelled over 8,000 miles.   

I met my sister at our homestay in Haus Khas Village,  New Delhi.   We stayed in Delhi long enough to acclimate, rest a bit and to explore the surface of New Delhi and Old Delhi with Harvindar Singh (.Our Sikh taxi driver).     We bought a few Indian dresses as we travelled with little clothing.  The air in Delhi was thick with fog and smog.   We met our driver Vikram ( Viki) and took off for one night in Agra where we visited the magnificent Taj Mahal.   When my eyes landed on that majestic marble masterpiece my heart skipped several beats and my breath escaped me for a brief moment.   

There was really not much more to write about in Agra other than meeting Asma, a local 21 year old girl who lives in Agra and to whom i was introduced by a friend in Grand Junction with whom I study spanish.   

Onto Rajasthan, India.  A land of ancient history, Moguls, forts and palaces.   We visited Jaipur (the pink city) , Jodhpur( the blue city)  and next will be Udaipur where we head tomorrow ( the Lake city).   I am not sure i can begin to describe the adventures, treasures and faces we have met in the last week.  The tuk tuk rides are a great adventure.   Yes there are foul odors and they are then swept away by the smells of fresh cardamon , cinnamon , ginger and turmeric.  The sadness of the poverty dissolves into the grandeur of the palaces, the forts and the pale blue and pink cities.  The smiles on the peoples face and the hands joined in prayer.  The chanting and the humming if Hindu  prayers are heard across the city.  
tWe are taught to be wary of the Indian people.  " You cannot trust them" .  "They will cheat you and steal from ".  I am certain there is some truth to that.  But what we have pales in comparison to what they have so the cheating may amount to one dollar,  I am more struck by the sincerity and the charm and kindness of these people .    More than anything they want to help, to share and to have their pictures taken with us.   

When there is a language barrier , hands to the heart, eye contact and Namaste says it all.   Everyone you meet uses it.  It is sooo very amazing

It is a country of dichotomy .  My sister Cori and I have been invited to return to Jaipur for an Indian wedding.  We have tweaked our itinerary just a bit to be able to attend it.  Oh the people you will meet along the way.  You never know what the next day will bring.   

To have this time, this space and this time to share with my sister.   For that i am grateful.  Thank you to those who are following along with me on this dream come true to incredible India 

with love,

​Stacia
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why India?

1/20/2019

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A patient asked me " what is it that you hope to get out of seeing India?"

It is such a great question and i was not exactly sure how to answer.  

India has been a place that I have wanted to experience for many years.  As i contemplate the question I am beginning to understand what it is that I want to understand.   I think it is the extremes of beauty and ugliness,  joy and sadness, clean and dirty, ups and downs.    

In my life i have experienced the joys and the sorrows and i believe in the yin and yang of life.   I also love color and visual beauty whether it be landscape,  art or the expressions in a person's face.    I do feel that India is going to be visually moving in so many ways.   

I feel like I have been so organized planning this trip for the last year.   The last week  was a SHIT SHOW  Packing at the last minute.   Finding a bag has been my biggest hurdle so far.  I have returned multiple bags.  They are either too small or too large or too heavy .   I love to travel light but for some reason travelling to India so far feels like travelling heavy.  I hope to shed pounds as I go.  Tonight i packed and repacked and i am still not thrilled with my bag.   I feel like that is part of the thing.   
travelling in India breaks my usual rules. Every one i talk to who knows this country says   stay flexible.  Do not expect things as you expect them. 

 Travelling in Italy we travelled so comfortably  with a small carry on backpack.   This is a different adventure that has started already.  Handling frustration and  overwelm.   That will be a key for us.

So be it. My bag is large.   It does not have wheels, it is heavy..  But the odd thing is is that I do not think i have overpacked .  I feel like this is going to be  just one of the many double sworded, unanswered mysterious questions that I will have in the next month.  

I need to shut my eyes and sleep .

One other thought.  I have been thinking about this trip with my sister Cori.  What an incredible opportunity we have to spend a month adventuring together.  I think about when i was born, she was the only child i knew as she is just about 2 years older than me.  My other sisters are younger. 

I am very tired.  I have worked hard.  I am ready to relax but have a very long journey which starts tomorrow at 5:30 am . If you want to follow along go to staciabaker.com and sign up .   If you are so inclined, reach out to my love Kelly Baker who is holdign down the fort with our high needs son while i am gone

i am so grateful for the support.   Next up is we will be on the beach in Mexico.  

Buenos noches amigos. 

with Love, 

Stacia

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lack of painting motivation!

12/19/2018

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It is a thing!   I hear it from all artists.    When i look at what i have painted in the last 6 years my mind is blown.  Yes it is true that i have been  prolific.  I believe i will be again .  and if I am not i know that I will still be painting.    My motivation to spend time in my studio has been obscured by other things.  

My family.   I feel like I have made some amazing strides with some family issues that really really matter.  In my yoga practice I have learned that you must tend to the root which is what i have been doing.  

My finances.  Leaving for a trip to India for a month in just over one month from now I have worked extra in my true job.  Being a physician for me amazingly has been one of the most satisfying jobs I could have ever dreamed of.  I know not all doctors feel that way but I do.  I LOVE MY WORK .    I truly do.  I am working every day in the upcoming month of January to bank some vacation time so that when i am in India I will not have to go totally without pay.  Thank you Craig.  

I honestly feel very fulfilled and happy i just have not been able to share the quantity of art that I may have shared in years past.

My dear teacher Ardith Goodwin ( who by the way is one of the most amazing artists that i know ) calls it FWELL. that means to allow the space and time for the well to fill.  I know that is what i need.  I will return to my paintings.  Right now i paint here and there but it is more about filling my well.    Please stay tuned. 

And if you want to follow my India blog sign up at wttps.staciabaker.com
Adventures and creativity abounds.  omg

​


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October 04th, 2018

10/4/2018

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