INvisible Beauty In Pain Artist Spotlight & Interview | Suzanne Stewart

The INvisible Beauty In Pain campaign’s fifth artist spotlight is Suzanne Stewart

Suzanne Stewart is from Canton, Michigan and has been a Chemo/angel and a patient health Advocate, since 2005. She has also been a fundraiser, blogger, writer, event planner & Mentor for RSD/CRPS & Chronic Pain, since 2007.

Check out Suzanne’s interview below:

When did you begin your career as an artist and what inspired you to pursue art?When did you begin your career as an artist and what inspired you to pursue art?

(SS) It was the 3rd year into my life with chronic pain. I was on an overnight trip with my husband & daughter. We found a small country store that had some beads and string. We got some little whale beads and made bracelets. It was great quality time spent together. I realized how relaxing it was and at that time I’d just started being a “chemo-angel”. I needed mail able gifts to send to people with Cancer. That’s when I started “Support In Jewelry”. I found hand painted ribbon awareness beads and started a website online and made jewelry for every type of cancer.

Then in 2007, I got worse and acquired the most painful chronic pain disease known. It’s called RSD/CRPS. Reflex Sympathetic Dystrophy aka Complex Regional Pain Syndrome. I started making all types of jewelry in support of all different illnesses. I donated it to different shows, conferences etc. I sold it and gave the funds raised to a non profit org. for the disease. In 2013, my CRPS went systemic or full body. It’s’ severe and inside of my whole body. I also live with R.A., O.A. and several other pain illnesses. I have a very hard time even making one item now. But I still try to do raffles, donations and random drawing fundraisers. I have one going right now for CRPS awareness month.

Do you have a chronic invisible illness?

(SS) I have several very painful and life altering Invisible illnesses. My disability started first with being approved for SSDI for PTSD, Battered Women’s syndrome and CKDII, in 1999. In 2002 I was diagnosed with a TBI & was in brain injury rehabilitation for 3 years. I was diagnosed with multiple injuries and had many surgeries. I have Dysautonomia/POTS and a dual chamber pacemaker. I had a heart attack and CVA, along with 9 surgeries.

In 2007, I was diagnosed with CRPS s/p foot surgery. Later in 2013, after a heart surgery, my CRPS which spread to systemic/full body CRPS. I found out that I have O.A. and R.A. along with Combined Immune Deficiency Disease, Degenerative disc Disease, multiple herniated, bulging discs in my lumbar & cervical spine and Arnold Chiari I malformation, which causes horrific spinal migraines. I have 20+ painful Invisible illnesses, but the last one that I will share is that I also live with a connective tissue illness called Polyneuropathy in Collagen Vascular Disease (it is = to EDS type 4 Vascular).

How old were you at the time?

(SS) My first time being diagnosed with a chronic pain, Invisible illness was after that car accident in 2002. I was 40 years old, recently re-married and had finally found my soul-mate (in 1997); and I had two teenage daughters.

What lead up to your diagnosis (symptoms, dr visits, etc) and how did you find comfort through art, painting, singing, writing or being creative?

(SS) A man ran through a red light and hit my char. When I awoke, my life was forever changed. I had never known chronic pain before that time. Since this accident, I have had many surgeries, multiple injuries & visited too many physician specialties. I had 8 years of PT/OT and 3 yrs. of TBI rehab. I was diagnosed with CRPS at my post-op check up following surgery on my right foot. It spread to both feet, legs, knees and then later to full body, systemic. It’s inside of my chest and my GI tract and now I have Gastroparesis due to the CRPS.

I went to my Hematologist office and they had colored pencil art classes for free. I tried going and enjoyed doing that. I started my blog “Tears of Truth” I had been an Artistic Interpreter for the Deaf. I was in 2 Sign Language, choreographed performance groups. I love ASL and doing artistic interpretations of inspiring songs. I love to perform them even for myself, when I’m physically able. I even make You tube videos of inspiring songs that I do to American Sign Language.I have to learn the words first now, because I have 2 hearing aids since the brain injury made me Hearing Impaired. Then I started making jewelry as a way to be creative. I found ways to use my creations to put a smile on a cancer patients face, to donate to charities and to raise money for non profit organizations.

What do you feel is the most challenging aspect of your career as an artist?

(SS) Pain gets in the way now due to R.A., O.A. & the CRPS, along with the lesions that come with it. It really hurts to create now. I can only do one or two items a couple of times per year. Before 2 yrs ago, I made several items in a week. I still have several items that I’d made before I had to really slow down. As far as my Artistic Interpretation of uplifting/inspiring songs; this is challenging because I can no longer hear the words with the music. I have to learn the words and then put the music on and try to get it all together with my fluent ASL skills.

How does chronic illness impact your process as an artist?

(SS) I am unable to create whenever I “feel like it” inside of my head and my heart. I have to make my jewelry when I’m physically able. I can only do a little bit at a time. Also, my hearing impairment impacts my ability to do artistic signing to songs. The chronic pain and hearing impairment keep me from doing the things I used to love to do. But I still try to do what I can do and when I can do it.

What (if anything) have you found/ done that has improved your symptoms?

(SS) I’ve found other ways to be creative. I write and have become a columnist for a pain newspaper online & I write in my blog. I’ve written poetry that’s been hung in the Detroit’s Renaissance Center for Domestic Violence awareness month. I used my creative side as a “distraction” from my pain. It helps sometimes to use distractions. I love to do Artistic Interpretation of uplifting songs. Sometimes I even do it just for myself and my own needs to be uplifted.

How open are you with friends & family about your illness & symptoms?

(SS) I am open about my illness but sometimes I try to hide the pain when it’s possible, from my adult children and baby/toddler grandchildren. My husband of 20 years, always knows and can see the pain increasing. He can see it in my face, my demeanor and the way I start to speak & act differently.

What was the worst advice that you followed?

(SS) When my G.P. told me to start taking Fentanyl lollipops. I ended up being on them from 2005-2014. One day in December 2014,at my G.P. appointment; he told me it was his last day. I was lost with no place to go. I was afraid and then nobody would fill that script. I went through withdrawals and was so very ill for at least 6 weeks. It was very dangerous because I’d had a prior heart attack and a stroke. But I did it and I’ve made it and I never once “craved” them. My body got ill because it was dependent, but I never got a “high” and I never cared about taking them, mentally. I found a qualified pain Dr. and he’s helping me now.

Outside of art, What is your favorite way to cope with your life as a spoonie?

(SS) I love being on my special ‘lazy boy’ chair, with my cat, Luna and just being home with my husband; along with “hanging out” online with my social media friends. Also, whenever possible, I try to go for coffee, lunch or dinner with our friends. I love to write stories, passionate pieces and poetry.

What is it that inspires you to keep going, despite your illness?

(SS) What inspires me is the fact that I have outlets and I get to help others like myself. I love to be able to talk someone out of sadness/despair because of their pain. I also am inspired by getting to be married to the very first person who ever truly loved me. Inspiration comes from the feelings inside of us and the choices that we make. I like to feel love and to give love, that inspires me

What is one thing you’ve learned about yourself since your diagnosis?

(SS) I’ve learned that I’m not a “cry baby” and I’m stronger than I ever thought possible. I’ve also learned that the things that I thought could not do anymore, just need tweaking. I can still do some of those things, but just a bit differently.

What is the most important piece of advice you would give to someone newly diagnosed with an invisible illness?

(SS) Get information, be educated in your disease(s). Find similar friends that will not bring you down, compete with you to be “sick” but friends who are true, loving and kind. Stay away from the people who bring you down. Keep being positive even when it gets difficult.

Is there anything else you’d like the readers to know?

(SS) I’m almost totally unable to physically create this jewelry anymore. The pain in my bones, nerves and joints just won’t allow it. I still do the best that I can. I keep trying every now and again. If I get an idea, I try to hold onto it, until I can act upon it. I also found and use my other creative tools. I’m a blogger/writer,a mentor and I hold onto dreams. I try to keep awareness and support going for invisible and very painful illnesses. I try to be a “glass half full” kind of person. I founded and am administrator for 3 support groups online for Invisible Illnesses, CRPS and an International CRPS support group. I’m in the midst of obtaining a donated room to hold “in person” support groups monthly at a local hospital. I’m excited about that.

For the rest of KNOWvember, we will feature the biographies and the meaning behind the works of art created by and donated to the INvisible Beauty in Pain Gallery by each of the thirteen artists that submitted work for this campaign.

All works are available to be seen in person at 540WMain and are a celebration of The U.S Pain Foundation’s KNOWvember campaign which you can learn more about by clicking here.

To purchase any of Suzanne’s jewelry pieces, email Calvin Eaton at asktheglutenfreechef@gmail.com and to learn more about Suzanne visit her at about.me/suzydukettes.

INvisible Beauty in Pain Artist Spotlight | Alivia Ruiz

We are back in Rochester for our fourth INvisible Beauty in Pain Artist Spotlight.

The INvisible Beauty In Pain campaign’s fourth artist spotlight is Alivia Ruiz

Alivia Ruiz is a Buffalo-born artist, musician, and all around creative. She arrived in Rochester to attend RIT for her Bachelors Degree in Medical Illustration. After completing her degree, she decided to stay in Rochester to pursue a freelancing career, dedicating herself to her creative endeavors. She loves to sing, play piano, dive deep into mythology, write poetry, make jewelry, paint, and draw.

Her greatest source of peace and inspiration is the beauty of nature, and she relishes asking deep questions to connect with others in ways that cause them to think differently about their world and feel deeply into the beauty of who they are. Her donated artwork is called:

The Entropy of Depression
About the art piece Alivia says:
“Ever since 2012, I have struggled with depression, and the regret that comes from the missed opportunities caused by this elusive illness. My piece shows my creative self, represented by the orange figure in the center of the piece, constrained by the sorrow and lethargy that is leaking from my heart and paralyzing my hands
During my darkest times of depression, my creative self feels distorted, powerless, and in a loop of stagnancy and regret. The scenes she gazes longingly toward are the visions of her happy life coming from her mind to be manifested, but being sucked in by her sorrow and inability to act, until they disappear into the tiny black hole below her.

For the rest of KNOWvember, we will feature the biographies and the meaning behind the works of art created by and donated to the INvisible Beauty in Pain Gallery by each of the thirteen artists that submitted work for this campaign.

All works are available to be seen in person at 540WMain and are a celebration of The U.S Pain Foundation’s KNOWvember campaign which you can learn more about by clicking here.

To purchase Alivia’s artwork email Calvin Eaton at asktheglutenfreechef@gmail.com or check out more of her work on her Facebook page

INvisible Beauty in Pain Artist Spotlight & Interview | Isabelle St-Pierre

The third INvisible Beauty in Pain Artist Spotlight hails all the way from Quebec, Canada.

The INvisible Beauty In Pain campaign’s third artist spotlight is Isabelle St-Pierre

Isabelle St-Pierre alias ZAZAROXY is a french canadian artist from Quebec. She worked 20 years in Financial and Marketing of Insurance before her migraines became daily chronic. She donated two stunning works of art for the INvisible Beauty in Pain Gallery.

Check out Isabelle’s interview below:

When did you begin your career as an artist and what inspired you to pursue art?

(IS) I always had the artistic flame in me. I remember doing my first necklace with old buttons at age of four with my grandma. She taugh me knitting, embroidery, basic drawing and painting. She was the one that inspired me and encouraged me in the Art field when I was young. I began doing some Art again when I was about 30 (15 years ago…) to help me to deal with migraines: watercolor and sketching courses, making jewelry.

But my real passion for drawing and painting came back about 2 and half years now, first with Art-therapy sessions, followed by taking web classes on Creativebug.com and then going to an Art retreat in California meeting my idols Lisa Congdon and Courtney Cerruti and many other artists that inspired me and with whom I am still in contact.

Do you have a chronic invisible illness?

(IS) I have daily chronic migraines and Fibromyalgia.

When were you diagnosed with your chronic illness?

(IS) Chronic migraines were “officially” diagnosed in 2007 (at the age of 37) my Md specialized in migraines but I was having migraines since University increasing in frequency and level of pain across the years with daily frequency and first disability at work in 2004. In long term invalidity since 2012 (at age of 42), after trying so hard to combine work and an incredible level of pain occurring daily. Fibromyalgia was diagnosed in 2015; probably as a result of immobility, stress, daily neck and chronic pain.

What lead up to your diagnosis (symptoms, dr visits, etc) and how did you find comfort through art, painting, singing, writing or being creative?

All the symptoms I had, visits through all neurologists and doctors (so many!), emergency hospital stays, all paramedical trials (acupuncture, osteopath, chiropractor, massage therapy, etc.), all meds AND many disabilities lead up to my diagnosis. It is really hard to find the good doctor and team that will really help you. That’s why Chronic pain Associations and Patients’ communities are so important.

Making Art for me is SO healing even when my level of pain is high. For me drawing is my Meditation: it enables me to concentrate myself in my own kind of fairy world where I can release my emotions. I try to draw daily to keep my zen routine, often wearing my ice hat to control my level of pain, but I do it, I love it and I am proud of it. I suggest everybody suffering from chronic pain to find a creative activity they like and do it daily. You can begin just doodling or simple knitting, it’s so relaxing, you will forget your pain during your activity.

What do you feel is the most challenging aspect of your career as an artist?

Not comparing myself with people who don’t have health issues. I mean, I always want to do more, faster, bigger as others… but my body often says: It’s enough for today girl!

How does chronic illness impact your process as an artist?

I think you can really feel emotions through my Art, particularly in my drawings. That’s the comments I often receive. Living with chronic illness makes me more sensitive and I think it’s the positive impact.

Of course, I would love to do more Art, have my own Art & Atelier shop, go to more Art events, and sometimes it is really frustrating…but I am really proud of the progress I have made in last years and focus of myself progression even if it’s slower that I wish…

What (if anything) have you found/ done that has improved your symptoms?

(IS) It took me years to believe in that, but controlling your respiration and meditating helped me a lot in reducing the level of pain. A device called Cefaly, helps me. I wanna try restorative Yoga and more pool exercises. And very important, keep doing some simple activities with close friends, even when you have pain (up to a tolerable level of course). It’s like natural endorphins. Don’t stay alone!

How open are you with friends & family about your illness & symptoms?

(IS) I have to say that I am single, no children, with one dog. So my close family is very important for me and I stay temporarily in my parent’s home to break isolation and for help in daily activities. They are very compassionate and empathetic.

I know that my dad wishes so much that I will recover and will be like before… an energetic bomb! And secretly in my mind I have hope for that too. It is really hard to accept the “chronic” aspect of a condition, even after many years. I am still working on it and still trying finding new treatments at the same time.

My close friends are very empathetic and flexible for planning and last-minute cancelling activities. Of course you lose some friends that don’t understand your condition but you make new real friends, I can assure you.As for extended family, some coworkers and not regular friends: most do not understand what you have and judge you because it is invisible illness. I try to make the most education I can but sometimes, you have to give up and focus on persons that make you feel good. That’s what I do now.

What was the worst advice that you followed?

(IS) I think I did not really received worst advice except in 2004, a neurologist told me that there was nothing else to do with my case… I was really chocked, I cried, but the day after I was looking for another Md to help me, even if it was 3 hours from my home. I am very lucky to have parents, sister, close friends and coworkers that always wanted to help me and did not judge me.

Outside of art, What is your favorite way to cope with your life as a spoonie?

(IS) Playing with my dog Roxy. He is my best companion for 11 years. He can feel when I am in pain and can stay close to me for hours. He makes me smile when I am down and is my 24 hours friend. Animal therapy is for me the best therapy.

What is it that inspires you to keep going, despite your illness?

(IS) My family, my close friends, my dog, internet Art, Migraine and Chronic Illness community… and Me. I put Art and volunteering as focus in my life. It is SO important to still have dreams, realize them and always have projects in our life even if they seem impossible at first.

What is one thing you’ve learned about yourself since your diagnosis?

(IS) I am strong warrior! Of course I have ups and downs… but 2 years ago I really made the choice to live. I surround myself with positive, helping and creative persons; living the present moment and making my dreams come true, even if it’s hard, painful…it worth it.

What is the most important piece of advice you would give to someone newly diagnosed with an invisible illness.

(IS) Surround yourself with positive, helping, emphathetic people. Join an Invisible illness community to help find resources and break isolation.

Is there anything else you’d like the readers to know?

(IS) Don’t forget you are YOU and you are NOT your illness. And don’t give up! There is always someone somewhere to help you dealing with your pain.

For the rest of KNOWvember, we will feature the biographies and the meaning behind the works of art created by and donated to the INvisible Beauty in Pain Gallery by each of the thirteen artists that submitted work for this campaign.

All works are available to be seen in person at 540WMain and are a celebration of The U.S Pain Foundation’s KNOWvember campaign which you can learn more about by clicking here.

To purchase one or both of the photographs above, email Calvin Eaton at asktheglutenfreechef@gmail.com and to learn more about Isabelle on her Instagram page.

INvisible Beauty in Pain Artist Spotlight & Interview| Katie Golden

Our second INvisible Beauty in Pain Artist Spotlight features not only an amazing person and creative but a dear friend of mine. Her name is Katie Golden.

The INvisible Beauty In Pain campaign’s second artist spotlight is Katie Golden

Katie is an photographer, writer, and blogger from Santa Monica, CA. She is a chronic pain warrior and writer for the website Migraine.com She has lived with Chronic Migraines for over 5 years and will launch her very own website http://www.goldengraine.com in December 2016. Katie graciously donated two photographs for our gallery fundraiser.

Check out Katie’s exclusive interview below:

When did you begin your career as an artist and what inspired you to pursue art?

(KG) The pieces I submitted were photographs. One of me curled in a ball (taken by Elisabeth Viilu Photography) and one I took while holding my grandfather’s hand as he lays in the hospital after major surgery. I don’t sell my photographs, but wanted to donate to this cause. I do, however, try to capture moments of my life that show the challenges I face through photos. Every year I put together a photo journal that chronicles my chronic life.

Do you have a chronic invisible illness?

(KG) I have chronic migraine headaches. I am never without some form of head pain.

When were you diagnosed?

(KG) It’s been 5 years since the attacks became chronic (meaning I have 15 or more migraines a month).

How old were you at the time?

(KG) My first migraine attack was at age 5. I experienced them episodically until I turned 30 when I had an attack that has never left.

What lead up to your diagnosis (symptoms, dr visits, etc) and how did you find comfort through art, painting, singing, writing or being creative?

I’ve been living with migraine since kindergarten. But I will never forget the day that my headache specialist told me my condition was chronic. That diagnosis came after a year of testing and multiple failed medications. I’ve kept a diary since I was in 2nd grade. I felt compelled to write even more when I was diagnosed. I thought my writing might help others understand my disease and I was fortunate enough to connect with Migraine.com, who lets me tell my story. I had an “AHA” moment and realized that pictures paint a thousand words, so I began to take photos to go along with my writing. There are so many artistic ways to make an invisible illness visible.

What do you feel is the most challenging aspect of your career as an artist?

(KG) Taking pictures has become a hobby for me and I would love to do more of it. Since I try to take pictures that depict my daily struggle, I often rely on my boyfriend to shoot when the moment strikes me. He’s a great “Instagram Husband.” He believes in what I try to do with sharing photos of my life.

How does chronic illness impact your process as an artist?

(KG) During bouts of illness, that’s when I feel most inspired to take a picture or write about what I’m feeling.

What (if anything) have you found/ done that has improved your symptoms?

(KG) Being active. Even when I’m in the hospital for a week long treatment, I get up and out of bed when I can. During a horrible migraine attack, I find that the sooner I get up and moving, the sooner the healing starts and the stronger I feel over my pain.

How open are you with friends & family about your illness & symptoms?

(KG) Once I had to stop working due to chronic migraine, I turned to writing about the disease. My family and friends read my articles and posts. They are invested in my health. I’m incredibly lucky to have a support system that I don’t have to put on a brave face for. They look out for me and I don’t have to feel guilty when I can’t make it to an event.

What was the worst advice that you followed?

(KG) I’ve been given a lot of horrible advice. Most of the time, I smile and say thank you. People’s hearts are in the right place. But I can’t say that I’ve followed any of the bad advice. I do my research, weigh the pros and cons and decide for myself what I should try or do.

Outside of art, What is your favorite way to cope with your life as a spoonie?

(KG) I LOVE spending time with my girlfriends and their kids. Even when I’m having a bad day, they light up my life. I can get exhausted very easily and keeping up with them can be a challenge, but I wouldn’t have it any other way. And besides the kids, my girlfriends are so supportive of each other. We lift each other up. Also, nothing can beat watching the sunset with my boyfriend. It soothes my soul.

What is it that inspires you to keep going, despite your illness?

(KG) I’m a driven person. It’s in my veins. Writing and connecting with others in the migraine and pain community gives me purpose. I can’t sit by and watch the world happen without me just because I have a chronic disease.

What is one thing you’ve learned about yourself since your diagnosis?

That I can adapt. I can live a fulfilled life with chronic migraine.

What is the most important piece of advice you would give to someone newly diagnosed with an invisible illness.

(KG) You are not alone. There are so many support groups online and in person where you can talk to people who are going through the same thing.Also, finding the right treatment for you and your condition takes a lot of trial and error, which means having patience. The sooner you accept your illness, the sooner you will get to work on finding ways to cope with it.

Is there anything else you’d like the readers to know?

(KG) I believe in a balance of medication and self-healing measures. I love yoga and it has been a great way to connect with and listen to my body.When not creating art, Jeremy spends time with his family and house full of dogs or he is outside in nature looking for his next inspiration.

For the rest of KNOWvember, we will feature the biographies and the meaning behind the works of art created by and donated to the INvisible Beauty in Pain Gallery by each of the thirteen artists that submitted work for this campaign.

All works are available to be seen in person at 540WMain and are a celebration of The U.S Pain Foundation’s KNOWvember campaign which you can learn more about by clicking here.

To purchase one or both of the photographs above, email Calvin Eaton at asktheglutenfreechef@gmail.com and to learn more about Katie, visit https://migraine.com/patient-advocates/katie-golden

INvisible Beauty In Pain Artist Spotlight | Jeremy Belair

This past Sunday The First Annual INvisible Beauty In Pain Art Gallery Opening was held at my Community Center & Headquarters 540WMain. “INvisible Beauty In Pain” a collaboration with The U.S Pain Foundation showcases beautiful works of art and photography from thirteen artists who donated their works to our space. It also features the chronic pain stories from The U.S Pain Foundation’s INvisible Project. All proceeds from the peices sold will be used to further the community and awareness work of 540WMain and The U.S Pain Foundation.

I can’t even to begin to describe the success of this KNOWvember Opening Gallery. This gallery was a labor of love and the support from the Rochester, NY as well as our followers and supporters across social media truly warms my heart. I will save the details about Sunday’s opening event for later in the week. For now, I want to shift your attention to the campaign’s first artist spotlight Jeremy Belair.

The INvisible Beauty In Pain campaign’s first artist spotlight is Jeremy Belair

Jeremy Belair is a local artist from Hilton, NY. He has been involved in art his entire life, working in ink drawings, acrylic paints, wood burning and carving as well as mixed media pieces. He enjoys creating not only for his own artistic tastes and peace of mind, but also is available for customized pieces.

Jeremy graciously donated an acrylic painting titled ““Knowledge by Fire”.

According to Jeremy this painting represents:

the self awareness, and awareness of life and our world that comes going through some type of adversity. This could be recovery from an addiction, a traumatic event, or living day to day with chronic pain. It serves as a reminder that everything we go through is a learning opportunity to know more about oneself

 

When not creating art, Jeremy spends time with his family and house full of dogs or he is outside in nature looking for his next inspiration.

For the rest of KNOWvember, we will feature the biographies and the meaning behind the works of art created by and donated to the INvisible Beauty in Pain Gallery by each of the thirteen artists that submitted work for this campaign.

All works are avaialvle to be seen in person at 540WMain and are a celebration of The U.S Pain Foundation’s KNOWvember campaign which you can learn more about by clicking here.

To purchase Knowledge by Fire Send Email to U.S Pain Director Casey Cashman and to learn more about Jeremy Belair or purchase more of his art visit his etsy page at https://www.etsy.com/shop/JWBDesignsCrafts