Lupus is a chronic, auto-immune disease in which the body's immune system forms antibodies that attack healthy tissues and organs. If left untreated, lupus can be serious and even life threatening. Here I share how I am using my artwork and learning music to navigate me towards a simple goal of daily peace~

Bright Bird

Bright Bird
scroll way down to view my Hawaiian photos and don't forget to feed the fish!

Sunday, March 31, 2013


~ last June 2012 I flew off the 3 back steps and landed on my head, shoulder and ribs. This resulted in a  compounded concussion, severe bruising of ribs, shoulder and head and vertigo. I could not move my head without violent vomiting. I was then heavily drugged for 2 weeks. They wanted me to just sleep, but that had to be sitting up. Try looking straight forward and do not move your head and now do something, anything. Go ahead try it, what you gonna do? Also the number one rule with healing a concussion is no caffeine or alcohol. I was now out in the country with my dog and being my very own detox center! But believe me I felt like I  had the worst hangover ever and moved like a sloth. It was great comfort that Gracie never left my side for those first two weeks. I would reach my hand out to touch her constantly.
After the first week I began my first vertigo therapy treatment at the LMH Hospital in the Kreider Rehab unit under the care of fabulous Stacia Bone. A year earlier my mother had suffered from loose crystals in her ear canal. So I was familiar with the issue at hand and yes, it sounds weird that if the crystals in your ear fall off then you got problems. But google it, it is true!
Now my 61st birthday was coming at the end of the month and my son Hagen and his girl friend Nikola were planning to get me a 'ukulele. So we had been researching the size and style that would be just right for me. In fact we found THE one on Amazon. Paul decided he wanted to check out Mass Street Music and so while I was in treatment he was off. When I came out of treatment there he was in the waiting room with a gig bag in his lap with a new concert mahogany Kala 'uke inside it. Mass Street Music had matched Amazon's price and even had the very same 'ukulele we wanted.
But, I was just trying not to throw up! The treatment involves rolling and most people vomit during it. I was so proud that I had not but strictly was not allowed to move my head at all for the next 24 hours while my newly replaced crystals re bonded to the hairs in my ear canal.
So after going back home I was just so out of it. Paul left. I looked at the new 'uke. I have never played an instrument. So I sat down at the computer and since I could not even look down I held up the key pad to the iMAC. I typed in You Tube and pulled up 'ukulele strums. Then I scooted back since I couldn't see clearly and picked up the 'uke and started to strum following along with the video. This was the first connection I felt between my mind and my body since the accident.
Since the concussion had changed my eye sight I couldn't paint. Paul took Gracie out for her business until I was more steady. I could not drive yet. So being stuck inside at home I began to play the 'ukulele learning off of You Tube tutorials. After a month or two I found out about getting a scholarship at the Americana Music Academy in Lawrence. That hooked me up with my 'uke teacher Linda Tilton. She has the ability to challenge me without overwhelming me. I am sure her easy approach is what is keeping me stoked about playing. I was even in the Christmas music program for the Academy playing and singing on a stage!
One important issue arose when Paul bought the ukulele that day. Even though he checked with our son Hagen to see if it was okay as he stood there in the music store, it stole Nikola's thunder. You see this was a little bond she and I had developed after her parents had given her a ukulele. I kept asking if she wanted to sell it... she thought she should just get me my own! So I always think of Nikola when I play and I hope she feels that all her good intentions are received daily. It was very crucial in my healing that I was handed my 'ukulele at the time that I was. Lucky me all around for the families effort in a great gift.
I now have a second 'ukulele. Got my eye on a third even.....  and I know that playing them is healing my brain in a way that gives me more cognitive function in everything I do. The most noticeable improvement is in my memory. And at my age that is very cool!

~ here are links to:
Americana Music Academy, Lawrence, KS

Mass Street Music, Lawrence, KS

Friday, March 29, 2013


For years I have enjoyed orchids. They are easy to grow and in Hawai'i the climate permits them to grow wild. So a good trigger to promote that simple daily happiness around you is to be sure and have these or what ever flowers you like close at hand. This winter my orchids have been thriving in the sun in the back room of this small farm house. Everyday I see them and that triggers me to stop and take a moment to take them in. I feel good that I am growing them, I can run for the camera and shoot pics of them and I touch them. Sometimes I also get flowers once a month from Trader Joe's when I go into KC for my monthly food run. There is a variety I like that lasts gorgeously for 3 weeks! It is the best $3.99 that I can spend on myself. I am worth it even though I am totally poor ~and I can say that because I know some of you understand living on disability too ~ this is a management of my illness that is just as important as taking my meds. And they are easier to swallow ...Bahahahaahaha...
One cool thing about the local farmer's markets is that there are great flowers to buy when in season and you are supporting local growers and their families too. Even if I can only afford one flower, it is a real gem to bring home and set in a special place to enjoy.  *you can scroll down to an earlier post titled The Good Triggers and see more of my experiences and suggestions for more positive ways to cope.

Thursday, March 28, 2013

You can now view my artwork in a more enlightening presentation on my wesite. Go to:

Enjoy and mahalo!

 Jennifer Joie Webster

Monday, March 18, 2013

I'm back

   After an accident June 1st, 2012 that left me with a 2nd closed head injury and concussion vertigo I am making a post in over a year I think.  The summer and fall 2012 was spent sleeping pretty much. During the year the highway 59 moved a mile behind east of us in October and Gracie has begun to show signs of growing up. She likes to burrow under blankets to sleep, bark for what ever suites her requests and isn't shredding Paul's bed sheets lately......she also sleeps more. But she still needs lots of exercise and it has been a long winter all winters go.
Another issue for not posting is that the blog spot format changed and I just today had wonderful help from my son Hagen on how to get into my blog again. Thanks!
I have indeed learned that sometimes I just do not enjoy writing about SLE Lupus. But that is a common issue with health. Just tuff through it and try not to let it get you down, yeah?  My best advice to those of you is to focus on all the positive that you can gather in by any means. Just be happy any way that you can.
Then, I know there is not a big following here for reasons of not getting out there and getting connected. I will be creating an ART J'shui site and moving my art work there. It has taken me 3 years to get my art photographed and the files ready to print. This year 2013 I plan no art gallery shows, just exploring other art interests and painting for me and hopefully selling art too! Gracie is giving me that look....... I'm waiting 'Mom'..... yep, it is nap time.==naps are important! Just look how she has grown up! The Sophia Loren of Dals!

Friday, April 13, 2012

a 'nother day in Kansas, life is way more different than my isle. nuf said. I want to go home. I have tried, but the longer I am here the more my health fails me. THAT is why I left Kansas in the 1st place. I am still in touch with my friends at the Lupus club in sunny Honolulu and also my family there, Al and Dean. But, it is far from living a daily life in Kansas and I long for life in Hilo and hearing the happy coqui frog.
Now I have a pup in tow. Soon she tests for her CGC ( Canine Good Citizen) and then onto her therapy dog test after a year of training. It is relentless but well worth it . Every week I see progress in my Gracie. and I have a wonderful trainer in Nan @ Puppy Love and the Jayhawk Kennel Club. The best training are the people on the streets that when I say "she is training, please ignore her"---they get it and do so. Gracie has a special trait where she offers herself to smaller breed dogs and small children by laying down with out a command, accommodating herself. Some dogs do this, others don't. Next stop is therapy dog!!! Go Gracie-pooh!  I would love to work with her with the disabled, vets and the Lupus stricken.
Back to the new crisis for me at hand. My blood pressure is up and down. I think it is my longing for my home. Or age. Or just wanting to not be here at all. Also family pressures here with an aging parent is exhausting, but I have a new handle on it thanks to the EMDR training. Too many monsters from the past. You know what I mean. I try to live in the moment as best I can. But my mother likes to stir the pot of the past. And that just doesn't work for me when Lupus is triggered by stress. When you have Lupus you want the daily world we pass through to be calm.
I have two art shows this year. So lots of prep/ framing/ painting and stress and then there is the up keep on my Tuffie Jeep. On SS Disability it is hard to find the money to keep a vehicle on the upgrade. Especially if it is also your home!
Sometimes I wish I had stayed on the isle of O'ahu and just figured it out. But life there is brutal if you have no family support system. In 2007 the islands began to fold, then 2008 the economy crushed the island way of life. So much was lost in business going under and I too lost my three jobs one by one. But I do look at the good in being here now; I am painting more and now know that I can use it for better health and donate to good causes. The only thing is there is never any money being an artist, but  that is who I am.
As for Gracie? Her job is me. She is my life line for all that matters. If you were to meet her and look into her green -gold eyes it would be very clear to you. She is such a comfort that none can bring but her own sweet self. AND she guards too! Such a deal!

Saturday, January 7, 2012


   A new watercolor titled Meet Sophie was just mailed to Oregon. There it will be a surprise  from Cathy Little to her husband Rod. Cathy and I have reconnected on FB and are enjoying our newest friendship. She too is a lover of animals and life and after seeing my pet portraits that I relentlessly post here and on Face Book she asked me to do a painting of one of their favorite kattys, Sophie, a creamy Persian. When you first see her with her scrunchy face she looks angry or stuck up? But Cathy filled me in on the Sophie with in; a very sweet little tiny katty that was so gentle. She even found a bird and just cared for it in the yard never harming it until they could help it. She explained what a great picture it was how Rod, a big 6'2" and over 200lbs guy would carry this little 6 pound katty in his arms.
 While painting her from a small snapshot photo I got to sense this little one better.  It felt like she was right there helping me have her be seen. Sophie passed away a while back and left a very big hole in her owners lives.
So, Meet Sophie.....

This is a wash Watercolor style......
Nice to meet you Sophie!

Monday, December 26, 2011

Too Wet To Sign

A common artist trait is to paint the same image over and over. Well, I am that kind of artist I guess. I paint mangoes over and over. Each painting is a progression going to who knows where.
But after I had painted an oil early spring 2011 I  retook the sold painting in order to varnish it, then I painted a watercolor of the same layout. This is a 'channeled' design, which means it is my own minds image. And if you don't quite get that then I don't think I can help you!
 I have done this before; painted an oil then did it again in watercolor. When I did this I donated the oil to the new Health Care Access building  in Lawrence and that painting hangs in the farthest corner in the deepest most lost room.
 ho hum
meet Eight Lucky Mangoes~~ oil.....

Too bad, it is a sweet little oil. I suggested they sell it at auction so it would have a home.
The watercolor then of the same image was the first painting with my new Holbein paints and I was so enjoying them. Amazing watercolors. That painting I let go to an old friend.
Rats.... really liked it more than I thought.....

The Mango oil titled Easy Pick'ns is now varnished and being returned to it's new home. Nice.

And this new watercolor is looking for a home, but I am enjoying it until it moves out.
Paintings are like our kids maybe..... precious but ....really they are their own energy.

I'll sign it tomorrow when it is dry......

Friday, December 9, 2011

Flint Hills cows under the clouds.....

        Back in May of this year Marty Olson and I went into the flint hills to soul search and paint plein air. ...and we accomplished both. We also were struck by the clouds all day and painted them. At the end of the day, about 5:20pm we were driving into Manhattan, Kansas---where I was indeed born in June 1951 during the great flood, yep water baby me!--- I commented on the sky. I turned and said to Marty "I wonder who is under those clouds" and we went into town and ate a great meal Jamaican style at one of Marty's favorite haunts! Man is he fun to travel with!
~~~ the next day I learned that a tornado had struck Joplin MO. uhhh ohhh. That was the direction we painted and watched as the day wained. Holy Cow!

Two paintings have come out of that day. The first one is the actual plein air one I did as we sat under a tree out at the state park. I titled it Under the Clouds and it is indeed framed and for sale. See the Horizons show menu tab.

 The second painting just finished in November is Flint Hills Cows that I rendered from a photo collection I took while we drove through the flint hills. Actually it is my first cow painting and is waiting for a forever home. As a child I rode cows on my Grandparents' farm as they never got me a painted pony of my owney.

 Such a fateful day for so many.


Here is Gracie as a 10 week old puppy..... 'cept she isn't in Hawai'i, she is laying in the laundry room floor in the sun in Kansas! I chose this image of her to use for this painting. I then changed her and made her a black and no patch on her face and put her onto a beautiful lauhala mat under fronds of tropical foliage..... which she also has in her mouth! Gracie is a patched liver Dalmatian.
 The reason I made these dog image changes is that I wanted to do a true representation of a Dalmatian as this painting is being donated to the American Dalmatian Club for the research fundraiser in 2012. It will be nationally bid on with all the other entries to raise money for health research in dogs. The top 20 will be in competition for the cover of the annual publication too!
This painting is a watercolor 16 X 13 unframed.

This is my actual photo used of real patch puppy Anticipation Bodacious Gracie Green Eyes!

Wish us luck! Go Gracie!

In The Garden

   Recently I finished the first of two paintings owed toward the purchase of our little Dalmatian puppy Gracie. After 2 weeks of email negotiations we settled on the images of the two dogs, Waverly, who is actually Gracie's mother and Lucky who is her litter mate brother.
The watercolor painting is larger (unframed 16 X 20) since it contains two dogs. I had to scale the dogs together as they were from different photos and then we also wanted the tulips behind them. I opened up the eyes of the dogs from the photos because photos are hard to translate to art work and can look odd. Waverly is sitting on the stump with the geraniums behind her and Lucky is in the bed of ivy. The rest was up to me and I just faded the background using several images of the very beautiful gardens in Georgia where they live.
I can easily say the dogs were the easiest part! And the spots on a Dal actually forms the shape of the dog so having the spots correct is a must! But, I have not used a soft faded painted style in my work so I was on the phone to my dear friend Marty relaying my work and progress and gathering his input. He is great because he always calmly states that I always figure out what I want in the end and pull it off.
 So I just need him to record that for me so I can like play it daily..... maybe you should get one too! HA!

 As I worked this painting I really enjoyed how much Gracie reflects her mom in her.
Great fun, WHEW, now I am preparing to do one more painting for the other breeder and I have one I want to do of Gracie.

Gracie you're almost paid for!!!

Thursday, September 29, 2011

Big Mahalo

Recently the Horizons Land and Spirit show ended and I had such a good time meeting new people and getting fed back on my newest art works. I spoke at the Guild monthly meeting and was totally shocked that it was a packed house and people actually came from out of town. Whoa... I thought  no one would come and I would go home and watch Two and A Half Men. Well, surprise surprise.
I am very grateful to Linda Barantski for her nurturing and guidance in this show and all the other artists comments and delightful enthusiasm in the gallery.
Also I want to thank Tony and Kay Kugler for their generous Kugler Vineyard wine donation for my reception. I was so happy for their continued support that when I learned of Kay getting a new kitty I did a watercolor of her. She is just so pretty and Kay named the painting Calico Queen. Thus, my first cat painting!
And big kudos to Marty Olson and my son Aaron Miller who came and actually hung the show with me. I do plan on bribing them heavily for the next show! HA!
 Big Mahalo ya'all.

Thursday, August 4, 2011

Priority changes

When you become stricken with any illness you naturally make changes to your routine as to what gets done and what doesn't. Like getting a cold or the flu you decide if you feel bad enough to call in sick and not  going to work. Errands? nah. Stay home in bed? Camp out on the couch in front of the TV? Don't do the dishes? Somebody else take the dog out....... it all changes. Did you even know how much you did in a single day? Wasn't it nice how you felt good OR didn't feel so bad all over? 
 You ask yourself as you lay there in a heap.....and just when do I get to be me again? The day drags, the next one comes, slowly you get over whatever virus you picked up from a friend or the office or the grocery store.

Now imagine just getting worse. Imagine every symptom increasing and new ones beginning. The doctor that you always felt pretty good about looks at you like you are such a faker. We won't even mention the nurse rolling her eyes as she leaves the room. How could you have ALL these symptoms? He sends you off to a specialist. 
For me that was the best thing my primary care doctor did for me. He knew I was in territory that was beyond his scope of testing. He had an idea that I might have Lyme disease and passed me off to who I believe to be the smartest Doctor I will ever encounter. And when even he couldn't come up with a clear diagnosis he sent me packing into the KU Medical Center and yet agreed to be my primary care doctor because he had interned with the KU Med center doctor that was now treating me. This was the luck that got me way further down the path to leveling out my illness. I had two docs that actually knew how to communicate to each other. It was the best security blanket I have ever had!
As I got better and was given a diagnosis, which is a mental relief beyond all my fears to know what illness I was fighting, I settled into a life of constant change. Lupus changes inside you and sometimes takes off into a new direction. But, after this first flare -as it is called in Lupus, I was different in my viewpoint of the world and what was important to me. My priorities had been changed. This is quite common in people who have been through a serious illness, say cancer or an accident. The act of being so debilitated gives the patient a new perspective to live by. And it did for me too. When at the worst of my first Lupus attack if I had just a few minutes in the day to do 'something' I didn't clean house. And I was a Felix Unger from way back!( The  Odd couple show in the 60s) Well, having two kids brought me down a few notches, but I always liked orderly and clean in my life. Instead I would go out to my Koi fish pond I had built a few years earlier and sit. Listen to the water bubbling. Heavenly sound. Watch my fish, pet them even. Feed them...  admire the beauty of the plants I was tending. I just enjoyed my life in that moment. Lupus gave me a real special gift. I learned to live in the moment.

I remember when I was hosteling in Hawaii for three weeks I stayed at the Wood Valley Dali Lama Buddhist temple of Nechung Dorje Drayang Ling on the Big Island. Before I was to leave I went up to the house the last evening where I could do some laundry and the two monks in charge of the temple invited me into have some dinner with them. We had a great conversation. We had spoken earlier in my three day visit there and they knew I had Lupus and that I was looking for a healthier place to live. Kansas has an environmental trigger that sets off my Lupus. My really smart doctor has twice said to me that I will have a longer healthier life outside if Kansas. Well, that did get my attention.
The food for dinner was absolutely the best I had ever eaten in my life. Perhaps it was blessed? But I explained to them how lucky I was. That got their attention. If not for having gone through the ordeal I did in my first flare I would have never been able to change my mindset to the perspective I now have. So many things changed in this new outlook, this new vision I saw of me in this world. Loosing my health was so sad. I gained a new love for time and how we use it. I learned that many people in my life really are not very nice no matter how they present themselves and to recognize the ones that are just good souls. 
I remembered how much I loved nature. I learned how to see life and feel it. It became apparent to me how much we just waste and are so unconnected to enjoying the simplest things as we just walk through our days.
Luckily for me I can still tap into this. I can be feeling like crap or frustrated or angry or sleepy and I still stop dead in my tracks and notice the most wonderful little things-- hearing chimes or the light of a sun ray or the texture of a tree trunk.
palm tree photo

 well, this sounds all hokey, for real. 
But it does come out in my artwork! At least I think so. And so some  have told me. I try to show a softness to my images. I want to capture in my paintings that first feeling as when you look at something and it snags a hold of you and takes your attention. It isn't so consciously that I do this, I rather 'feel it' as I paint. Maybe I am tapping into that energy aura beauty of the world. I know I have no pain when I am painting or at least I should say that I have no connection to my pain, I have just the focus on my work. 
simple watercolor titled Aura of the Flower

That is why maybe, if you have Lupus it would be good to find that thing that you connect to--- are passionate about as they say-- and prioritize it into your life.
palm shadows on steps photo

Tuesday, August 2, 2011

The bad and the good of a choice made

Ah, the choices we make. No matter if they are hasty or thought out carefully we eventually get older and then wonder what we were thinking or are so happy about the choice we made. My valuable lesson is not to beat myself up about some of the choices I have made. I do and I have and I am really trying not to.
In all honesty that is a great attitude to adopt if you have Lupus or any other health issue where stress is key way into the mix.
The choice I made in 1987 to join my oldest son in his Tae Kwon Do class was to later become the trigger for me to become auto immune.  To explain, Lupus needs a trigger to be set into action. This trigger is a trauma you suffer. It can be emotional, like the sudden death in a family or it can be physical such as a car wreck. In my case it was both. You can read this in any Lupus book. Which is a great help now after the fact right? How was I to know that I was one of those people predisposed to getting SLE Lupus? Would I have done TKD if I had known? And please note that the Docs won't say it out loud, but the knowledge here is that Lupus is hereditary.
So what was the trauma that triggered me? After 12 plus years of horrible injuries and emotional stress involved of doing a very aggressive martial art the real clincher for me was my master hitting me with a bamboo sword in Kumdo practice so hard that my arms were black with bruises. (and yes, I was wearing double layers of protective gear and I did go in for X-rays) My theory is that he being newly married was taking his anger at the bride out on me. I made a point to show her the bruises even though he asked that I hide them. After he repeated this bashing the next practice I never went back. I was 5'1" @ 100 lbs. and this Korean instructor was in his 60s (meaning old enough to use self control) and over 200 lbs of body building on steroids solid muscle.
So here is the physical trauma and you are thinking why this situation over the other injuries? Throw into  the situation the mental trauma of having a trusted person assault you. Actually my therapist pointed this out to me.
 duh Joie.
All those years I blamed myself for putting me into the position in the first place. I can hash this around in my heart and mind over and over. It isn't going to make my Lupus disappear. And it is my take on the situation anyway.
Let's go forward to my learning Taiji (Tai Chi). Ahhh the soft martial art. Actually said to be the most powerful of all on its highest level, but for you and me just the slow breathing happy one. Like doing one of the Yoga forms, Taiji is going to help you in your life and with your Lupus. It will be a good choice. Now you have to make the good choice of choosing the right instructor for yourself. Don't call me, you are on your own!

Now lets look at the situation I walked into yesterday. At a local Merc I ran into an old towney that knew me in the days when I was doing TKD. He said "are you still beating people up?" I stammered out a "no" being suddenly thrown into the past like 25 years. He said it 3 times. "yeah but you used to beat people up..." On and on. Wow, that is all he knows of me. I walked away feeling bad. And that trauma pain I previously spoke of was suddenly back in my chest. I felt rather assaulted or shame -on- me and then BINGO!.... as I was driving away I remembered!
 It was Tae Kwon Do training that saved my life in Hawai'i when I was beaten and raped while in a cast up to my knee and using crutches. Whoooa. What a great choice I made to instinctively use my training that I had learned while beating people up.
Yeah, I know. It is back to therapy for me and you need to find a Taiji or Yoga class......

Sunday, July 31, 2011

Why a puppy you are asking.....?

Earlier this year in January and again in March, Paul and I had to go through the dog owners final act of 'putting the dog down'. We lost two dogs in 2 months. Beautiful black Dalmatians named Rocket and Lucky. In the Here's Gracie posting I explained that we tried to live with out a dog.
 yeah, right.
But a puppy? At the new age of 60?
~~~and as I type this she is under my feet chewing on what ever her mouth touches as I entice her with the actual chewing of those knotted cotton rope things, a big one, really nice...great colors too...

So let's go back in time to 1999 I think. I was sick. No one knew what it was. Some of the symptoms were fever every day, chest pains, diarrhea, stretching and breaking tendons, blood vessel ruptures under skin and in my eyes, sores in my mouth, extreme pain if touched, extreme pain to move, extreme fatigue to the point of only being able to lay still and just breath shallow, sudden falls- just collapsing, cognitive speech effects, nothing came out right my speech was so garbled, loss of muscle control to the point that I couldn't get the fork all the way to my mouth to feed myself- it would just fall and hit the plate loudly...I had so much all over physical pain that I thought I was dying any moment.
Me? I was a National Grand Champion in Tae Kwon Do and in tip top shape and now I could barley walk or even breath.
The testing began. Every week a new test and the wait and the negative report back. They were looking at Lyme disease. We had dogs, dogs have ticks, I lived in Kansas where there are lots of ticks. Lyme is a hard one to catch as the window of the positive for it is very small. More weeks went by as I hung on day to day. No, sometimes minute to minute. I have heard people say there is no way to live daily with pain at the above 10 level. Well I did and so do others. What are you going to do? There is no stopping it. There is no understanding it. You are trapped in a body that is in constant agony. Of course you have to live with it!
I had a huge crusty rash on my arm. I talked my Doctor into doing a biopsy--- told him he needed the practice anyway and after all it would be numb, right? One of the nurses said when he was out of the room that it was a Lupus rash, she had seen it before. I had never heard of Lupus. The biopsy told us nothing. Another negative. In this time 1999 there was no actual blood test for Lupus.
Now after 3 months of testing in this way my Mom happens to casually mention that once a doctor had told her that she had Lupus. She hadn't said anything because she ."...didn't want that to be what I had..". Yeah I still clench my teeth at that one.
I was sent to the University of Kansas Medial Center in Kansas City, Kansas. Whoaaa the testing starts all over. Now the focus is on MS. Months go by. I am still alive and wondering why.
The week after Christmas and before New Years I am on the futon in the living room for the night.
The first thing the KU Med center does is give me anti-depressants. I never take them. Now they know that the depression from constant pain is a biggy, but I know I cannot take them. I hate drugs, and my body is allergic to most and I do not believe in them. I think they make your mind worse. The chemical imbalance in my brain cannot be adjusted by these drugs. Period. Now... Paul had alcohol in the house from xmas gifts --we seldom drank in those days HA!-- and I have narcotics. Hmmmmmm.
As I lay there I am done. I am ready to move on. I cannot do this anymore. I am emotionally numb. My dogs are there with me on the futon. No one is home or they are sleep. No one knows how I feel. I feel like my relief is just a moment away. I am totally resolved and it is all good. I just have to manage to get up and take the drugs and drink the booze.
Picture two fifty- five pound black Dalmatians laying on top of me. Lucky is in the front and she puts her nose just under my chin. Her eyes are open and she just sighs as she lays there. Rocket, the alpha dog, is on my legs and she looks around Lucky's body into my eyes. uhhhhhh ohhh. They know.
I tried to move my legs. I have a hundred and ten pounds on top of my one hundred pound body. Lucky shifted a bit but not to let me up she pressed down on me. Her black nose is cold on my skin and her breath is so warm with it. Her big deep brown eyes just watched me.
I would open my eyes every few minutes to see her starring at me. She pressed her chin down onto my collar bone as if to tell me not to even think about getting up.
I fell asleep.
 I woke up. I was fine. I looked at the dogs still there. Dalmatians have a way that they smile. They jumped up ready for food! Of course! Life goes on.
After this the Med Center puts me onto Lupus drugs saying that if I improve then they know I am auto-immune. I feel like a guinea pig. The Steroid drugs work. I slowly get better. I learn more about Lupus and make diet changes. At that time it had now been over a year.
My dogs saved me.
I never said anything about this night to anyone until years later after I moved to Hawai'i. I think my family was surprised. They never knew how bad I really felt. During that year I refused to go to the hospital because I did not want to die there in a strange place. Because I soldiered on they just didn't have to think.

So now there is Gracie to give that unconditional love to us and trust in me. I do not expect to ever be that down with Lupus again, but ....
Dogs are just amazing. What else can I say? We have a puppy!

* do not do Tae Kwon Do. Choose Chinese Taiji. Or become a surfer.....

Friday, July 29, 2011

Stay in touch and compare simple

This morning I got an email from a very good friend of mine named Ann Zeddies. I grabbed the phone and called her and settled in for a long conversation that just heals the bones! We met years ago and our friendship is one that has developed slowly to the point that just last year we realized how much we truly have in common. We met in Lawrence, but as she has moved throughout the country with her husband Timothy we have always kept up together with ourselves and our kids and our interests.
The point here is that we support each other and come away with a better balance to ourselves and I always feel stronger, even enriched after we have spoken. Take the time for yourself, you are worth it!

While we talked about our illnesses, EMDR therapy ( I learned last year that she is also getting treatment ) and our parents and their declines, I emailed her the picture I had of the Koi Dance painting that showed the actual reflections of the Gold and Silver leaf applied to the Mandala Ying Yang circle. She immediately suggested that I post it. She had just read my blog updates and thought it must be shown what the painting actually does.
 so here it is....
Ann is herself a published science fiction author, an accomplished martial artist with ever so many awards and the mother of four great kids. Not a weird one in the lot!
Great to have a person to bounce ideas off of and I love listening to her. 

For more information about Ann Tonsor Zeddies go to:

Thursday, July 28, 2011

the friends you need to let go...

Recently I blogged about starting a therapy for my Lupus called EMDR. The basis is that trauma lives in the physical body, not the mind. Well, that knowledge is like new to me and I immediately related it to Lupus. Stress and trauma are huge triggers for auto immune disorders so I quickly thought that this could be the ticket for me to a better grip on my condition. And I was correct. But it took a detour I never saw coming!
 EMDR is giving me amazing results. It is not easy to go through and that tells me that it is real. If it was easy then I think it wouldn't be real. To cover major ground quickly here I thought it was most important to be treated for some rather bad situation trauma suffered in 2008 while living in Honolulu. But from the first intro session my therapist grasped that we needed to go waaayyyyyy back in my life. And we did.

So let us go to the friends we have. I have had many friends that it was actually not a friendship at all. It was just a knowing them. I thought it was friendship just because I did know them. But, now I have reclassified that after learning what a friendship actually entails. Most of the people I knew in my life just were not stacking up to be my friends.
My Friendships are now based from the timeline of beginning EMDR therapy. The friends I have now all occurred during this new treatment--which is on going--and the old people I knew are being re looked at. The people in my life I now call my friends all have similar characteristics about them that the old known people seem to be lacking. I got it figured out now that I am 60 freak'n years old! So great for me, but what about you?
If you have Lupus you are dealing with so much. Constant pain is one that really sucks. Living in a body that is not the one you use to know and that you seem to not be in control of is alarming and scary. So you want and truly need the people in your life to be your friends.
Now you may have already weeded out a few friends; the ones that could care less about your illness and tell you that you're faking it. Yeah, well OK. They are not friends. Recognizing those not so true friends usually occurs before the actual SLE Lupus diagnosis, when you are scared and sick and reaching out and trying to understand just what is going wrong with your body. But you are not able to dump them. You just suck down their comments and go on. Am I right?
And that is fine. You have a lot going on. Let's not fret over it. But, consider this. If you think of a conversation or an event that you had with a friend and it gives you a physical pain in your chest or body...? that is trauma.
My example is a known friend that I have that never lets me have it. By this I mean she asks how I am, knowing I am stricken with Lupus, and I tell her maybe I am like this way or that and she then says that "oh, we all feel that way it is just our age". Hymph. I make a statement and she then takes my feelings and says they are not true. If I say something I am going through due to my Fibromyalgia she claims that everyone has that problem. She never lets me say "oh I feel this due to my illness.." she just strips it away and I end up feeling like I was trapped into a conversation that is really unimportant to her even though she asked me how I was. And she does it every time! So why am I doing this?
Now I say" It is complicated" and leave it at that. Most people really do not want to know how you really are they are just practicing having a conversation with you and a real friend will actually stop and listen.
Now you have to figure out your 'friends'. You are worth having real friends in your life if you are dealing with Lupus. And that trauma pain I spoke of? Well, in my EMDR therapy I made it go away. Yep! I can think of those people or events in my life and I do not feel that pain in my body! It has been released. Cool yeah?
I now have the tools to recognise and have better friends and have better support for myself.

Thursday, June 30, 2011

Here's Gracie!

On June 22 after several weeks of waiting Paul and I drove to St. Louis to meet our new pup and bring her home. She is a special companion dog for me and comes from Atlanta, Georgia being bred by Donna Truit of Anticipation Dalmatians in Tennessee.
This year in January and again in March we were greatly saddened to put down our Dalmatian girls Rocket and Lucky. Both were 14 years old and they just got too old and let us know it was time for them to leave us.
This was very stressful as many who have gone through it will tell you. We first said no more dogs! and just pretended to live. But after a few months we decided that our lives just sucked with out a dog and began to search for a rescue dog. All my applications in three states were rejected due to us being renters and not having a fence on our property. I was very down and frustrated. We kept looking at Dalmatians on line because we just love Dals and I was then recommended to Donna and we came to an agreement for a new puppy and she picked our pup out for us. I liked the name Bebop when I saw the first picture of her and Paul liked Bingo... after looking at a new picture of her on the computer we agreed on the name of Gracie and waited to meet her to see if it fit.
She is a female liver 'patch' so not a show dog, but all her markings and standards are just so show quality. The thing is she has a patch on her face instead of her ear. This is like the best patch ever as it makes her so unique and totally adorable. And it brought her to me!
These dogs are specially breed to do agility training and I would like to train her in it even if we do not compete. It is pricey, but I think I can make some of my own training equipment.
The point is that it gets me moving. I am so busy now with a new pup and painting for the next art show. Dalmatians are runners and I need to get Gracie out twice a day at least for some hard exercises.
It gets me some hard exercise too! Just what the doc recommended. And since this is my 60th birthday month what a great present to have for health, love and sharing our lives with a dog named Gracie with the green eyes!

Sunday, June 12, 2011

the GOOD triggers

What makes our minds comfortable is a key to the depression in the struggle with pain when you have Lupus. It is all about what turns you on. The tiniest thing that makes you happy, you look forward to, you enjoy or you relax with is now going to be your new bag of tricks. A routine is what you need to develop that runs in a loop so you can keep the good vibes running in the back ground of your daily life.
Personally I get a feeling. A warm fuzzy one I guess you might call it. Or I feel a security when I do certain things or I feel like I have some control over a body I live in that has decided to jump off a health cliff and take my brain with it. What I do are simple daily things that makes me feel good..... because I feel so bad most of the time.
Here are some examples of my bag of tricks. I make sure I have them as best I can even if I travel.
*I found early on in the battle with my Lupus that I like lights. This is candles and strings of lights. So I looked up in my favorite feng Shui book the best placement and the worse placements of strings of lights in my house. Then I decorated. So in the evening or cloudy days I can plug in my lights and just be all lite up. I also have a wide collection of candles that I burn at night when watching TV and movies. When I was ill with my 1st Lupus attack I did this like relentlessly. Now, I have eased off. Some days and nights I am more 'needy' than others.
** I burn a lot of incense. Oh what a basket of delightful selections I have. But I am careful to have open windows or in a room that I am not too clogged up with it as I developed asthma last fall. And that also helps me to choose the right one for the mood or cleansing I wish to do. Sometimes I just put 2 sticks out side in the garden to lighten the chi energy around the house. I always take two sticks out to offer good energy when I go to visit my departed doggies Lucky and Rocket. By making a blessing I am comforting my mind and I look forward to it.
*** Visual colors are another real mind impression I like. So I found these lime green curtains at TJ Max and hung them in the two front rooms of the living room. When the sun sets in the west it gives a beautiful green glow. This reminds me of living in the jungle in Kahalu'u O'ahu, Hawai'i. That gives my mind a calmness that I enjoyed so much when I was living there. It is hard to duplicate the lush greens of my island home. But these curtains do the trick. Now I really look forward to that time of the day.
****Music is a must. I need lots of music and many kinds. I paint to Hawaiian music always with out fail. There is no washer or dryer going, nothing to interrupt the flow of rhythms and sounds. I sleep to music starting off to the sounds of ocean waves playing as I read before bed, then just fall asleep to it. I use to play slack key guitar so I have changed over time. I think this is natural. I stream in my favorite radio when I want variety too. In fact I know the Hawaiian traffic report before my friends do in da islands because they are still asleep due to the 4/5 hour time changes. Heheheh. When we talk later in the day they are always saying "how do you know this?" when I ask about something big happening there.
Also do not rule out meditation chants during the day that you can get. That works for me, maybe classical music works for you. There are music CDs that have a special rhythm set to them for the health of your heart or special wellness promotion.
Make a list of your special brain happy requests. These are just little things that you maybe already do, just make sure you actually do them. Maybe that special scent of a body wash is just the ticket for you. You may not be able to do them all, but you can fluctuate between them too. And I notice I do so naturally and do not worry about it. And that is important too. Just try some and see what works, if you force yourself then just let it go.

Thursday, June 9, 2011

Hagen's newest urls

My youngest son Hagen Miller has a new interview available. He also has a blog titled 'swing shift'.
Go check it out!
mahalo, the Mom

Keeping Busy

Now that the spring Hawaiian Kine show is over I was planning to return to some selfish painting to clear my head of all those paintings I think I am going to do some day.
If you missed the Hawaiian Kine show in the months of March - April you missed a packed room of happy people in Hawaiian shirts feasting on fresh pineapple, fruit salsa, scratch Hawaiian cakes, mango mojitos and Kugler Vineyard wines!
This show was the creation of my High School pal and fellow artist Marty Olson. Once Marty saw my work he simply said " you need to have a show" and that is exactly how he snared me. I was happily painting away at home and stacking up paintings in piles and rows not really looking to do an art show and put myself out there........
ahhh, but there was a catch. This year all the showings Marty is doing in his Do's Deluxe hair salon location is the theme focus of obsessions. ummmm that would be me and da mangoes I am sure..... if you know my work you know that I am happy to paint mangoes.
Marty's venue was perfect for me. The rooms are well lite and warm, perfect for my colors of works. Then there is Marty and his mom Betty. They are like the mellowest most supportive people I actually get to have as friends. It was wonderful and totally exposed me to new Lawrence artists and allowed me to show what has been in my head all these years.
Behind the scenes I have other mellow supportive people all doing voodoo to make this show a success. Am I lucky or what? I am thinking there are some forces here working in my behalf~~ spirits or people are the positive force that is keeping me busy! And now I will be doing another Hawaiian styled show of works at the 1109 Gallery in Lawrence, Kansas. The dates are the end of August through the end of September. I will get back to the exact times and maybe give you a preview!
For now big kudos to Marty for his faith in me! And mahalo to those secret squirrel people and spirits that are out there... I know you are out there...

For more about Marty Olson and his art work go to: