INvisible Beauty In Pain Artist Spotlight & Interview | Amber Dawn Knox

The INvisible Beauty In Pain campaign’s sixth artist spotlight is Amber Dawn Knox

Amber Dawn lives in Rochester, NY and the INvisible Beauty in Pain Gallery is her first time painting in many years as well as contributing a piece to a public art gallery.

Check out Amber’s interview below:

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

(ADK) My grandfather was very encouraging and inspiring. He drew, painted, took me to the MAG, and got me into classes there.

 Do you have a chronic invisible illness?

(ADK) Yes. Fibromyalgia, Scoliosis, Spina Bifida, and Carpal Tunnel

When were you diagnosed?

(ADK) Scoliosis since I was a child. Fibromyalgia in 2000. Carpal Tunnel in 2006. Spina Bifida in 2012 after x-rays.

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

(ADK) Drawing and poetry got me through a lot, recently has been a struggle to remember to create. The piece I made for this show happened because I felt I needed to let people know how I feel lately, like I’ve been replaced, and isolated. I want to remember to create more.

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

(ADK) That it hasn’t been prevalent enough, that I don’t feel well, or good enough.

How does chronic illness impact your process as an artist?

(ADK) It has stalled it. It’s frustrating. I’ve been horrendous at self motivating.

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

(ADK) Acupuncture, Sensory Deprivation, Massage, Physical Therapy/Aquatherapy

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

(ADK) Extremely open.

What was the worst advice that you followed?

(ADK) I can’t recall anything right now…

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

(ADK) Surrounding myself with love of family, friends, and support from fellow Spoonies

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

(ADK) My tiny family unit.

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

(ADK) I cannot hold up the entire world, I need to focus on myself.

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

(ADK) TALK TO PEOPLE. Express your feelings, frustrations, hopes to people who love you, ask them to HEAR you. Get a therapist so that you can vent willy nilly and not feel like you are overburdening a few people. Access online support groups too. Ranting amongst like minded people is therapeutic in itself.

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

(ADK) I am so pleased to have found the motivation to create something for this show, and a cause so intimate to me.

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 Amber’s painting email Calvin Eaton at asktheglutenfreechef@gmail.com and to learn more about Amber visit her at https://twitter.c/ferrafemina http://ferrafemina.tumblr.com/

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 | 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

KNOWvember: Complex Regional Pain Syndrome (CRPS) | Living with Fibromyalgia

KNOWvember: Complex Regional Pain Syndrome (CRPS) CRPS is characterized by prolonged pain, changes in skin color, swelling, and temperature to the affected area.

There are two similar forms, called CRPS-I and CRPS-II, with the same symptoms and treatments. CRPS-II (previously called causalgia) is the term used for patients with confirmed nerve injuries. Individuals without confirmed nerve injury are classified as having CRPS-I (previously called reflex sympathetic dystrophy syndrome). Some research has identified evidence of nerve injury in CRPS-I, so the validity of the two different forms is being investigated.

CRPS is characterized by prolonged pain, changes in skin color, swelling, and temperature to the affected area.

CRPS symptoms vary in severity and duration. Studies of the incidence and prevalence of the disease show that most cases are mild and individuals recover gradually with time. In more severe cases, individuals may not recover and may have long-term disability.

To learn additional information and gain supportive resources about CRPS, please visit: http://rsds.org/living-with-crps/

To read about U.S. Pain’s Casey Cashman, who lives with CRPS, please visit:
http://www.invisibleproject.org/…/2015-parti…/casey-cashman/

#KNOWvember #ComplexRegionalPainSyndrome #CRPS Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) National Organization for Rare Disorders, Inc. (NORD)

Source: U.S Pain Foundation

KNOWvember: Trigeminal Neuralgia | Living with Fibromyalgia

KNOWvember: Trigeminal Neuralgia (TN) Type 1 (FACT #1)

Trigeminal Neuralgia (TN) Type 1is characterized by sporadic, shock-like pain that can last for seconds to several hours. TN Type 2 is known for continuous crushing, burning pain. There are about 4 in every 100,000 individuals living with either form of TN.

Trigeminal Neuralgia (TN) Type 1 is characterized by sporadic, shock-like pain that can last for seconds to several hours.

To learn more about this condition, visit: http://fpa-support.org/

Michaela O’Connor a U.S Pain Foundation Pain Ambassador lives with this debilitating illness.

To read about U.S. Pain’s Michaela O’Connor, who lives with TN, please visit: http://www.invisibleproject.org/…/2013-pa…/michaela-oconnor/

#KNOWvember #TrigeminalNeuralgia #FacePain

Source: U.S Pain Foundation

U.S Pain Foundation’s KNOWvember Campaign | Living with Fibromyalgia

The Gluten Free Chef Blog Omnimedia, LLC & our brick and mortar headquarters 540WMain has partnered with the U.S. Pain Foundation for their KNOWvember campaign. KNOWvember is a month-long educational initiative focusing on all things chronic pain.

KNOWvember is a month-long educational initiative focusing on all things chronic pain.

Every day during the month of November, U.S. Pain is providing the nation with information about the complex disease of chronic pain. This year’s theme is Raising aRAREness.
The campaign will focus on types of rare diseases often misunderstood and not well-known. In addition, the organization will host various FREE webinars, Twitter chats and other virtual events. Registration information will be shared on our social media platforms as well as within its official eNewsletter.

U.S. Pain Foundation challenges EVERYONE to become more educated through #KNOWvember. Information is key to education, awareness, support and proper care!

Be sure to  LIKE, SHARE and RETWEET the daily posts and upcoming virtual offerings.
The fun begins today!

Let me know if you’re going to participate by commenting below with the hashtag #KNOWvember! Let me know why you are joining our educational campaign that focuses on rare diseases this year (in honor of a loved one, to increase your awareness efforts, etc.)

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