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, 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.