By Navy veteran Lucy Wong, MA, BS, Quilter, Painter, Seamstress and Disease Hater

My serious health problems began in 1987; I have systemic diffuse scleroderma, a rare autoimmune disease that affects about 300,000 Americans with no cure. It turns the skin hard and tightens the skin, and has the potential to cause serious damage to internal organs particularly the lungs. It is more than a skin disorder, often progressive in which body cells attacks its own tissues. The impact varies from person to person and it may be an annoyance with daily life or even fatal. I have used art therapy as my natural healer instead of medications to cope with chronic illness.
I served in the United States Navy and worked with countless chemicals where OSHA, Occupational Safety and Health Administration, did not exist to protect workers against them. I was in the latter part of the Cold War when I got out of the Navy in 1984. I seemed healthy but a couple years later became seriously ill. I experienced chronic fatigue and body and joint aches. Any time away from work or school, I would go to bed. I got plenty of rest but it did not help. I wondered why I was falling apart at this time.

 
I was frequently late to work because of not being able physically to get dressed in a timely manner. Also, I could not get up when the alarm clock went off. My body ached all over and my fingertips turned blue and grey all the time and were extremely cold. Cold and stress does trigger Raynaud’s and it caused me pain and anxiety from flares. It is like having mini heart attack in my hands or feet. Raynaud is caused when the blood vessels narrow and results in reduce blood flow to skin making it look blue. Most who have it feel extremely cold and finger and toe tips look pale white and have mottled pale skin of the ears, facial areas or other areas. Now because of art therapy, I have developed practical skills to handle skin problems from Raynaud’s. I can make caps, gloves and scarves to keep me warm. I use tubs of skin crèmes and lotions to conserve moisture and heat.
What should have been the prime of my life in my middle 20s, I could barely wash one cup or fold one piece of laundry before I collapsed to bed. Finally, I ended up in the hospital and could not walk and had to use a wheel chair to get around. I was unable to feed myself because all my limbs swelled up. My meals had to be prepared for me. That’s why I know ready meals delivered by local senior centers are helpful for patients recovering at home. I was on temporary disability at this time for four months and hated it. I lived at home. My sisters May and Lou as well as our Mom, had to help me.

 
Doctors first thought my illness to be in my head then after clinical laboratory tests revealed positive ANA, anti-nuclear antibody screening for autoimmune or inflammation. My family doctor consulted with the rheumatologist who had not seen me yet that I had lupus. It was because the symptoms are similar, but I was so happy to get this news. Later on, it was definitely scleroderma with hand disfigurement, thinning of skin on boney parts and shiny skin. When I was married in 1991, my husband had Tricare for Prime, military medical insurance, and the doctors at Naval Medical Center San Diego diagnosed it.

 
Often, the right medical provider is needed to make the correct diagnosis. Although, the physical symptoms were noticeable seeing my skin tight and shiny around boney areas on my hands, lower legs, face and shoulders. The disease had not progressed to the latter state so the previous doctors made the best decision with what I looked like and they probably did not have more specific diagnostic labs as now.

 
I worked for thirty years before medically retiring. It was this one job which led me to arts and crafts in 1999, I was working in the STAR clinical trial in San Diego, the study of tamoxifen and raloxifen drugs for prevention of breast cancer in high risk women who did not have cancer. Often came home stressed out, I sensed that I needed a sewing machine and went to Sear. I bought a Kenmore brand which I still use. 15 years later, I continue to do arts and crafts routinely as creative therapy for wellness. Currently, I participate with the Arizona Art Alliance program for veterans in Tempe and Mesa, Arizona. This allows me to participate in these art therapy classes and gives me something to look forward each month.

 
It is never too late to start to sewing or taking up any form of arts and crafts. I have taken pastels, painting, ceramics, painting and drawing classes because of their therapeutic and practical value. Living with a condition that never goes away, it is not uncommon for me to feel depressed. Further, when I saw what I made such as a simple peasant top or grocery bag boosted my spirits without traditional medications.

 

Prescription drugs can cause adverse effects on the body, but making creative projects is a natural way to heal and to maintain good health. It’s my choice not to take any medication. I would not smoke marijuana because I know it can damage fragile lung tissues with weaken immune system.
Over the years, I have won many awards for my quilts and wearables. I started out by taking sewing classes to make wearable arts. I took a lot of classes at JoAnne Fabrics, Hancock’s, quilt shops and more. I would buy clothing patterns for 99 cents when they were on sale and buy up to ten at a time. While watching TV, it was fun taking the patterns and cutting out the pieces. Later, I submitted my sewing tips to Simplicity pattern contests. I won free patterns of my choice. Soon after I made display items for Hancock’s store in Oceanside, California.

 

Later, I took fashion design classes at Palomar College in San Marcos, California. I learned pattern making and later participated in the yearly fashion show. I continued to sew non-stop and made prosthetic pants for the injured soldiers returning back from Iraq. When I moved to Lake Havasu City, Arizona and joined the Havasu Stitchers guild for seven years. While with the Havasu Stitchers, the guild and I made over 100 pairs of pants and I made 16 more on my own. I made caps for chemotherapy patients, pillow cases for Phoenix Children hospitals, quilts for veterans and doggie pillows. I made so much for others!

 

While living in Lake Havasu City, I took all the classes offered by the guild, the quilt shops and other sources such as a Panamá quilt cruise in 2009. On this trip, they had award-winning, world-wide quilt instructors teaching their arts and techniques. At this time, the Havasu Stitcher’s formed Quilting at the Lake, where national quilt and wearable art teachers taught their crafts too. I continued to take more classes from them. It provided me emotional stability for my health and it did not cost much.

 

When I moved to Gilbert, Arizona near Phoenix, I quilted the “Macaw Quilt” for the Arizona Exotic Parrot Rescue in Scottsdale, Arizona. I miss that quilt but it can be found on Facebook. When I was in the Navy I learned about endangered parrots and now try to create art to generate awareness and money to help them. From my veteran art painting classes by the Arizona Art Alliance, I paint birds with acrylics and put the painting on the raffle table to raise money for the birds.

 

Art has motivated me to enter into competitions and I submitted my painting “Scleroderma” to Rare Artist – Rare Disease Legislative Advocates. I was awarded a $600 stipend from them to talk to lawmakers on Capitol Hill. Last October 2015, the Scleroderma Foundation sent me to Capitol Hill to encourage funding research to cure fibrotic diseases. They target veterans like me with a rare disease or someone who has lost someone from scleroderma.

 

Not working has made it easier to care for myself. The stigma of not working and being disabled as a young adult for life has changed in our social community. Today, it is not considered a negative social stigma as much for me. It is possible to live a normal life. I constantly educate others about this and ways to create positive awareness for chronic conditions. We all have the power to make a life for ourselves. I laugh and say, “I really suffer from arts and crafter’s attention deficient disorder,” in regards to my serious and potentially life threatening medical condition. I believe that creative art therapy has helped me to live a healthier life style and to manage it well. Art Therapy is a valuable skill to practice as much as possible.

 

Art therapy is a constructive way to resolve anger and post-traumatic stress disorders and to diminish the hurt and burden from social injustices. Often, I want to paint a picture that tells a story how to conserve our environment on Earth and why we must value the animals in the wild. Also, creating the simplest project makes me feel that I am not a disappointment. I was a high achiever in my young adult life being the first in my family to finish college; that I soon found myself not being able to hold a job down. Seeing an actual Lucy creation made me realize that I was not a failure.

X