An Arist with an Invisible Illness

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National Invisible Chronic Illness Awareness Week, September 14-20, 2009

What is an invisible illness? It's a term used to refer to a medical condition that isn't visible to others. It encompasses a range of conditions like rheumatoid arthritis, diabetes, asthma, fibromyalgia and many other conditions. According to the 2002 Census, approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy. Why is this important? Society expects the ill to look ill. People have preconceived notions on what a really sick person should look like, and so, people like myself, who have a chronic illness, are judged because we don't look sick.

My illness is fibromyalgia. I was diagnosed about 6 years ago. There is not any part of my life that has not been changed by this. I don’t look sick, but even on my good days now, there is always pain and exhaustion. I work in a bead store, and while my co-workers know about my illness, most of our customers do not. I teach at the bead store, and most of the students don’t know that I have fibromyalgia. I love trying to explain to someone that I can only teach once a month because it takes me a month to recover. They look at me like I have “lazy” tattooed on my forehead.

For people with an invisible illness, there is often a feeling of judgment, or lack of understanding. I myself have been guilty of this in the past. You see someone pull up and park in a handicap parking spot, and they walk away from the car. They look fine and you instantly assume that they are cheating the system, probably using someone else’s placard. Now I understand you don’t have to look sick to be sick.

My fibromyalgia causes me to have symptoms that range from extreme and almost constant pain, migraines, severe restless leg syndrome, digestive issues, blurry vision, chemical sensitivities, and constant fatigue. People with fibromyaglia have sleep issues, we don’t get into that deep REM sleep, which is the restive and restorative sleep. We start to have cognitive issues when this is going on, trouble thinking, remembering, and talking. I always mix up words. I will call a couch a “curtain”. I can usually tell by the look on someone’s face that I have messed up my words again, they always look so confused. All these symptoms and yet I don’t look sick.

How does having fibromyalgia affect me as an artist? For one thing, it’s become pretty clear that there are some things that have become very hard for me to do. I rarely work with my clay for pleasure any more; it’s hard on me. The same goes for crocheting. I love both of these crafts, but I am slowly letting them go. I love doing the wire wrapping but can’t do it all the time either, it’s almost as bad as the crocheting.

How does having an invisible illness affect me as an artist? People have this expectation of you, if you are an artist, that you should be out there selling your work. I did try to do craft shows for a couple of years after my diagnosis, but I was killing myself trying to do all that physical work. I decided to quit selling a few years ago and try to concentrate on my job. This isn’t working either. I give my job every ounce of energy I have, and then I come home and rest up for the next day of work. I have no quality of life anymore. Getting a new job is going to be difficult with my health issues, so the solution is that I need to sell my work. I can’t tell you how many times I have heard “you should go do this, you should go do that” and when I say that I am not physically capable of it, people always look stunned, because I don’t look sick. If I ever do shows again, it will only be with someone else doing the set up for me. The ideal situation is online selling, no show set up required! For now, I am trying to set up my little etsy shop and hopefully I can quit my job in a few years and work from home.

Why am I blogging for National Invisible Chronic Illness Awareness Week? Because I believe in the power of those of us that are ill. If we stand up and explain, help educate, eventually we can overcome the stigma attached with invisible illness. I don't often update my blog, but this is very important to me. Thank you for taking the time to read my blog!

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Ancora Imparo Design

I finally got off my duff and opened up an etsy shop! This will feature more then polymer clay, I have lots of things I love to make! It's starting out slowly, but I am working on it every week.

What is Ancora Imparo? It is a quote attributed to Michelangelo in the later years of his life. It means "Still I am learning". I love this, and decided years ago that if I ever did open a shop, this would be the name. I am more excited about what I might learn tomorrow then what I already know today!

Here are some pictures of some new stuff I have been working on. I have been making my own earwires, doing some wire wrapping, fusing silver and having fun!

"Burnt Offerings" and finding an old love again.

About a decade ago, when I first found I was addicted to polymer clay, I fell in love with doing filigree work. I discovered eventually I could blend my clay colors as I was extruding them, and I became even more entranced.

Shortly after this, I became a victim of a violent crime. I was at work, and a guy put a gun up to my head while he robbed us. I immediately had a severe post traumatic stress attack. I couldn't leave my house or go anywhere by myself, and work was out of the question. I sat around and thought about the incident over and over. My husband had to drive me to therapy appointments, because I thought I saw this guys car every time I got behind the wheel. After a week or two I eventually turned to my clay and my new discovery. For almost a month, I worked on these beads. While working on the beads, I just blocked everything out, and would get so caught up in them that I forgot to think about the armed robbery. That is just the way it is whenever I do the filigree work. They really did help me to heal. The beads are quite large, I really never meant to wear it. It was meant as an art piece, even though I didn't consider myself to be an artist at that time. A friend talked me into submitting them to a magazine, Jewelry Crafts, and to my amazement, they published the piece, with my instructions.

I ended up developing fibromyalgia shortly after the armed robbery (there is a connection!) and over the years, my clay went on the back burner. I spent the last 3 yrs trying to work full time at the bead store, and that didn't really leave me much energy for my clay. I was still teaching polymer clay, but rarely brought the clay out just for myself. About a year ago, I decided I wanted to try some filigree again. I remembered how therapeutic it was, sitting and coiling the strands of clay, gently making precise cuts so everything fit together like a glove. I don't know how to explain it, other then it's almost like a trance-like state.

I had been at a bead show last year, and my friends at Sonoran Beads had trays of Kazuri beads. I have a great fondness for Kazuri beads, click on my link and read about how they are created! One of the trays held a beautiful selection of muted green beads and bright deep red beads. I was drawn to them immediately. When I got home that night I started working on my first filigree beads in many years. This bead was going to be this light happy celery colored bead and looked beautiful when I put it in the oven. Of course, my temp was off, I hadn't turned on my convection oven in months. The bead toasted and turned this darker, very gray shade of green. I was disgusted at first, but the more I looked at it, the more I thought, wait a minute, it's EVEN better then before! Some of the beads I picked out had that same exact shade! Serendipity! I love that! I made more beads, and more jewelry, and they are some of my favorites to wear now.

Leaf Print Beads

Wow, two posts in two days! Can you believe it? I have been inspired by my good buddy Karen Ottenbreit, who has been working hard on getting her website up and running, setting up a blog and an etsy shop, and then jumping in and trying to figure out facebook with me. She made me feel like such a slug! So...hopefully her work ethic is going to rub off on me some!

I made a whole series of these leaf print beads a few months ago. Some of them were the colors you do find leaves in, shades of greens and browns. But I had the most fun making them in colors you don't see leaves in, aqua, pink, mauve, purple, turquoise and red. I want to make some more, most of them are long gone.

I used different leaves from my yard, and a few I snuck from my neighbors! Raspberry, strawberry, lilac and birch were all that I could find so late in the year. I am impatiently waiting for our long Alaskan winter to be open so I can add more leave print molds to my collection.

Hearts for Valentine's Day

I have been working on some hearts for Valentine's Day. I myself like a lot of texture (and I LOVE that I don't have to sand them!) but the beady folks that buy my beads tend to prefer as much bling as possible, so I created a number of beads in both styles. The turquoise bead has a cane in it that I think was made by Leigh Ross, it looks like babies breathe and I love it. The rest of the canes are mine, old ones...I can't make a small cane to save my life, so I have lots and lots of canes I need to get some use out of and this was a good excuse to get them out.

This is just a small sample of what I have been working on. Hopefully I can sell some, and if not, I will have them as inventory for the Bead Expo at the Anchorage Museum of History and Art, held in October. I haven't done a show in a many years, and I need to get back in the grove...the Bead Expo is always one of my favorites!