5 posts tagged “art”

Patients at work: Member Nancy on being her own boss

Posted January 10th, 2017 by

We recently launched a blog series about patients who’ve started (or are gearing up to launch) their own businesses, sparking a discussion around how to manage your health without giving up on your career goals.

Say hello to Nancy (@spicerna), who sat down with us to discuss how she finds a balance between living with bipolar I and expressing her creative side through her art. Nancy chatted with us about the kinds of projects she likes to work on, and why it’s important for her to be her own boss: “I need a job where I am the boss every day. There is an unpredictable nature about the illness…not a day that goes by to where I am not making judgment calls to maintain my health.”

Can you tell us a little about yourself and your diagnosis experience?

I have struggled with symptoms of Bipolar I, since I can remember. I really noticed the ups and downs in the teen years. And at age 16, I had my first psychotic break, (1 out of 5 breaks in my life.) I have always been an overachiever and had big dreams and goals for the future but the combination of everything that I needed to succeed broke me. My body and mind couldn’t handle it. There was never a balance of my life. I never took a break I was a workaholic. I slept just 3-4 hours a night most nights. I had as many successes, as I did years of crash and burn.  It was just hard for me to work a mainstream job. I can’t do deadlines very well, stress triggers Mania. I was in complete mania working a full-time job and going to school for 7 years of my life then in a complete depression for 8+ years as I worked each day to recapture my life. Since I had 5 times of extreme psychosis. It wears on your body. I just had to begin plans to do a 180*. I was choosing the path to the most resistant and not enjoying the ride along the way. There were many things that I was doing wrong. I needed the balance, peace of mind; love for myself and to not live in extremes.

I have a certificate in residential planning and I planned on having a career in kitchen and bath design but that is high stress and the 180* was to find that my hobbies and being an artist is more of a goal and where I should be headed now. If I could make that work and market it to make some income. Then I can kill two birds with one stone I could have my success and support myself and take care of my illness at the same time.

I need a job to where I am the boss every day there is an unpredictable nature about the illness there is not a day that goes by to where I am not making judgment calls to maintain my health. I have to take many brain breaks clear my mind. That gets in a way of a full time every day job.  So to work at my own pace is crucial. So I can work around my mind.

How did you first get into making art? What are some of your favorite projects?

I started cross-stitch at age 8 at the same age I would draw in 3rd grade floor plans of my favorite houses that we vacationed at. In high school I took drafting class. I was very into residential homes and design. Through school I loved anything design and art related and at age 12 I determined that would be my life goal, I wanted to get into homes and design the plans for them. Well that idea evolved and now the goal is to be an artist and create art for people’s lives. It took a long time to make that distinction. I guess that is part of the process of the journey.  My cross-stitch was an obsession growing up. I made over 45+ pictures most of them were gift to friends. By working with my hands and heart it was a release to use the needle and thread, very healing. Then after a while after I chased after my career for a while I realized that I wanted to get involved with other mediums so with no money for school I began to teach myself using YouTube for advice other mediums, to illustrate for cards and create paintings. Wherever my ambition will lead. I am interested in paper, wood and fabric. I am defiantly in the experimental stages, working on many different projects to see where that may lead.  Right now, I am drawing and gravitating towards architectural element and gardens.  The sky is the limit.

Where have you been able to sell your art so far? What are your plans for growing a business out of it in the future?

I was making and illustrating some cards for people around me I would go to market and sell my cards just for the experience and wow they sold like hotcakes and had some people pay $10 for one card and there were orders for batches of 12 cards for Christmas and finally I just got warn out with all the work and found better ways to market my cards. I have one idea to sell and make good money buy illustrating my cards then making copy’s at the printers then selling or making silhouettes on the Internet for Cameo cutting machine sell the rights to the company and then when people buy my silhouette on the web I get paid a percentage I liked that idea. All of this is going to take me a long while to manifest I am becoming an expert in my own field so I am gauging down the road. 

How does living with bipolar affect your creative process?

When I am in mania my mind is racing the world it is so much deeper and broader and I have so many ideas. I have so many ideas but there not concrete. On the meds I struggle with similar issues as in mania; plus to focus, concentration, comprehension, low energy. I do think clearer on the meds but the symptoms never go away. It takes much strength to break down and be in the mood to do art so I am surprised when I look over my work and see so much progress.  So maybe once a day do a little bit. It is hard when your mind is choreographing dance songs in my mind and you know how to make that happen but all the details of the work and learning everything to piece that together. I don’t have energy for that. But it goes through my mind. All I know I can do anything I set my mind too there is just isn’t enough time for it all in this lifetime. Sometimes I think that I have the illness to keep me down to earth instead of a balloon flying off into the universe I have so much internal power.

On the flip side, does the process of making art help your manage your health?

Art is passion: it is metaphysical and spiritual. It takes you places. Color, and creating: helps release your mind. It keeps me occupied, during this life we call on earth.  It take’s skill and the process of learning, growing and creating that specific look is a life long job so fascinating to find.

I can manage my health by getting to a place to where I feel at complete peace and feel like I am doing my calling in this world. I feel depressed and moody if I am not doing that. I need Art in my life.

Do you have any advice for others with chronic illnesses who wants to start their own creative businesses?

Do it for fun first for years then add the buying and selling part. That is what I am doing? I feel more prepared to sell my work that way. Do your research about the business end and start with small classes to help you understand the business world. Become and expert first and then the process will be less stress on you. Owning a Business is a risk and you want to do what you can to succeed.

Most of all love you and have some faith. There is power within your heart that is just waiting to break through. Believe in that every moment of every day. Love yourself first and foremost and love others around you. Give to them in increases the harmony. Don’t get trapped in the hole of oppression and burden, get out!! Then you can succeed in all area of life and be ready for your own business.

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Patient Advocacy: An interview with artist and activist Regina Holliday

Posted November 22nd, 2016 by

Regina Holliday wears many hats. She’s an artist, activist, speaker and author, and she’s painted hundreds of patient stories on the backs of jackets in an ongoing art project called The Walking Gallery.

Through her art, Regina promotes better care, treatment and transparency in healthcare. She’s been an advocate of PatientsLikeMe for quite some time (two of her paintings hang in our office!), and shares our belief that patients and their providers should work together as a team.

Today, we’re sharing a recent interview from Regina Holliday’s Medical Advocacy Blog. Check out what she has to say about the role of a patient advocate, the importance of choice in healthcare and the impact art can have:

“It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article.  It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts.”

 

How would you define the role/responsibilities of a “patient” advocate?

The patient advocate can be defined in several ways.  Sometimes this is an official staff member in a facility.  They can operate as a patient navigator or customer service operative.  In the best scenario, their job is to help the patient understand the processes and options in care within the facility.  In the worst scenarios, the patient advocate operates as a tool of damage control to damper litigious action of distraught family members.

Sometimes the patient and family hire a patient advocate from a registry like the AdvoConnection. In this case the advocate may be a nurse, a doctor, or a trained and experienced caregiver who helps the patient while hospitalized or at home. They obtain medical records, ask questions, keep notes, help patients make their own difficult medical decisions, and review and negotiate medical bills.

Often the patient advocate is a close friend or family member who is not paid for their service. This advocate provides many of the same services as a paid advocate, but often is learning on the job. Occasionally they have a background in medicine, and use that knowledge to great success helping the patient ask the right questions and get appropriate care at the correct time.

Finally, there are patient advocates focused on policy.  I am often classified among this category, although I prefer the term patient activist.  A patient advocate focused on policy attends local, regional, state, and federal meetings to provide a patient perspective in policy decisions.

*(This is by no means meant to be an exhaustive definition of a patient advocate. Just how I define it in response to this question.  There are several other resources out there to learn more, like this one.)

** (Additional edits were made on 10-5-16 to clarify the responsibilities of patient advocates in relation to the AdvoConnection.)

You do a number of these sorts of speaking engagements and presentations around the country. Are there some unifying themes — clear trends — you see, common ideas that many people share about their worries or attitudes toward health care? Patient safety? Patient advocacy?

I have been attending medical conferences and public meetings for the past seven years. In that time I have watched HITECH legislation morph and change.  Patient access to data at stage one of Meaningful Use had budding teeth and at stage two it got poor fitting dentures.  I have watched the ACA become the law of the land, only to see constant steps to repeal it.

I watched the concept of patient engagement grow from a demand in small healthcare meetings, to a hashtag on twitter  (#patientsincluded), to trend of conferences inviting patient speakers.  I hoped that the next step was true partnership in decision-making and design.  Sadly, of late I have often heard that “patient engagement” was out of fashion.  We are now onto MIPS and MACRA and massive ACO’s.

I have watched patient safety advocates work for years with very little attention paid to their cause. I was happy to see Value Based Care begin to role out, as it addressed so many concerns of these advocates.  I am saddened to hear how many attendees at conferences expound on their love for fee for service.   Or twist the intended purpose of reducing readmissions, by leaving patients in hallway for days to be “observed,” but not admitted after complications.

The most apparent trend of the past seven years is that there are powerful lobbyists in this industry that will do anything to keep the status quo alive and well in healthcare.  There are also amazing individuals, often on Twitter, (check out #hcldr), that will not stop fighting for the patient voice and the positive disruption that comes when data silos are leveled and technology is used appropriately.

Will patients ever be like consumers of other products? Outside of elective procedures or choosing a birthing place/option, how much real consumer choices do patients have in their health care? How would you like to see those avenues expanded or re-routed?

I hate the word “consumer” when applied to healthcare; it assumes we take and never give.  Partnership in care requires two-way communication.   Care is always about choice.  When we embrace price transparency, a patient can decide which facility has the most affordable MRI procedure.  When we have medical record data transparency coupled with a clinical trials database, a cancer patient can decide the best personal path for their care.  Which may include a hospice path, if that is their choice.

We have a choice right now.  The difference in healthcare is that we have to fight for that choice, whereas in retail it is expected that customer will decide which items to buy rather than the shopkeep.

Regina Holliday during a visit to PatientsLikeMe in September 2016

How would you like to see health care systems and hospitals–particularly public and teaching systems– involve patients or their advocates in meaningful aspects of care best practices, policy making and priority-setting?

Patients, caregivers, and patient advocates need to be present in meetings throughout the facility.  For far too long we have been forced into the role of lobby designers.  We ask that you invite us to take part and provide appropriate recompense for our time.  Or schedule the meeting after the workday is done at the facility.  That would be fine.  Then everyone at the table can be the unpaid volunteer that patients and family caregivers are so often asked to be.

You might want to make sure we can have those meetings next to a playroom though, so our children can play together while we work together to create new policy. Because whether you are a patient or a provider, childcare is expensive.

How would you describe your painting style and approach?

My art looks like the work of the children’s book illustrator Garth Williams and the activist painter Diego Rivera fused.  As a few people have told me over the years,  “Your work is often sweet and disturbing at the same time.”

Describe the healing benefits and/or the impact that making art that tells stories about health care can have on patients, survivors, care providers?

As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul.  It is a very nice feeling to be in the zone and at one with the cosmos.  But the creation of art could feel like a nail ramming through my hand, and I would still create.  I use art as a tool and the goal is to impact others.

It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article.  It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts.  To know this image is someone’s story. To look at the painted eyes that look into yours and seem say, “I died, and it is all for naught if you do not act.”

Are you alright? by Regina Holliday

Of all the art you’ve made–your Walking Gallery, the murals — can you choose one piece and describe it and explain why it’s a piece that you especially want to share?

My favorite piece is “Are you alright?”  In that painting, I captured my late husband Fred. He stares at me from that painting like he is still with me.  Still alive on pigment covered canvas.  Still urging me to help him, a patient.

And every day I do exactly that.

 

 

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Patients at work: Member Jenny launches online craft shop on Etsy

Posted November 8th, 2016 by

 

A few weeks ago, we kicked off a new blog series about patients who have started (or are working on launching) their own businesses. We’ll be featuring some enterprising members and learning more about how they manage their health and their career goals at the same time.

Today, we’d like introduce Jenny, (jhound), a member of the bipolar community who recently opened an online shop on Etsy called OldSchoolJenny. Jenny designs cards, scrapbooks, printable journal kits and other paper crafts with a vintage flair.

When we caught up with her, she shared about her diagnosis experience, her creative process and the health benefits of working with a passion: “Having my Etsy business gives me reason to keep going. It gives me a sense of purpose and it also brings me a lot of joy. “

Can you tell us a little about yourself and your diagnosis experience?

I grew up in Southern California in a foster home. I joined the military when I was 23 and met my husband who was also in the Navy in 2002. We lived in San Diego for the first five years of our marriage and moved to Michigan when we both got out of the service in 2006.

My first breakdown occurred in 2004 a year after we got married. I had a severe depression that involved some serious paranoid delusions (psychosis). I was hospitalized for over six weeks and then medically discharged. My initial diagnosis was major depressive disorder with psychotic features. Although I believe I had my first mania in 2005 while my husband was deployed, it wasn’t until I had a severe mania that included religious delusions in 2008 that I received my diagnosis of bipolar I with psychotic features.

I finished college after we moved to Michigan. I have a bachelor’s degree in psychology and a master’s degree in library and information science. At various points in my life I thought that I either wanted to be a counselor or a librarian but right now I am happy working on my Etsy business. My husband just graduated from Central Michigan University in May. We have recently relocated to Adrian, Michigan for his first engineering job.

We do not to have children at this point although it is possible that we may adopt in the future (you never know). However, we treat our dogs like our children. We have two basset hounds that we adore and who keep us very busy.

How did you first get into crafting and digital design? 

I have loved crafting all of my life. My favorite activities in school were always the artistic ones. I still look back with fondness on finger painting in preschool. As an adult I continued crafting when designing and constructing cards, especially for my husband, Chris.

I started a wedding scrapbook shortly after we got married but it took me several years to complete because I was such a perfectionist. It wasn’t until I bought a complete scrapbooking kit at a yard sale last summer that I was able to let go of the perfectionism and just let my creativity flow.

As for digital design, I had a copy of Photoshop that I used extensively while Chris was on deployment. Creating digital collages was one of my favorite ways to escape the loneliness I felt while he was away. Now I just love creating digital art journal pages for people to use in their crafts.

What are some of your favorite things you’ve made?

One of my most favorite things that I have made is a framed scrapbook page that I created for Chris’s graduation. It includes some of his graduation photos and some quotes from his family members about how proud of him they are. I think it came out very nice.

I also really like the Halloween junk journal that I made for my Etsy shop. It includes lots of vintage images that I found that all include black cats. I am attached to it because it is the first of hopefully many junk journals that I will be making.

Something else I made that I really like is a scrapbook that is “all about me.” I enjoyed documenting my life in this manner and I feel that it has become a keepsake for me.

What’s your creative process? What (or who) inspires you?

Inspiration strikes in different ways. Sometimes I am inspired by other people’s creations that I find on Etsy or on Pinterest. Other times I am inspired by positive affirmations and quotes. Sometimes I can just look through my materials and find a scrap of paper that inspires me. I am also inspired by vintage images.

What has been the most challenging part of starting your own business while living with bipolar?

I think it may be having my level of commitment waiver with my mood fluctuations. Having bad days when I feel uninspired and some days when I fear that having a personal business may be a mistake even though most days I feel grateful for the opportunity that it provides.

On your Etsy profile you say that your “biggest desire is to bring art into other peoples lives and to inspire others to live their best possible life.” Can you talk a little more about this?

My initial projects involved positive affirmations because they inspire me/help me to think more positively. I was hoping they would help others as well. One of my goals is to make a mental health journal and other tools to help people with mental illness. I have seen some examples of mood journals, etc. on Etsy, but I plan on making mine not only functional but artistic at the same time.

How does your art affect your own life and your condition?

I feel that my art really helps me and helps my condition. First it helps me to stay positive and gives me something productive to do. Having my Etsy business gives me a reason to keep going. It gives me a sense of purpose and it also brings me a lot of joy. So far I have been very lucky in that I haven’t had to deal with a serious depression since opening my shop. I am hoping that when it happens I will be able to rise above and keep operating my shop. If not, it is very simple to put my shop on vacation and take a break if needed.

Do you have any advice for others with chronic illnesses who want to start their own creative businesses?

My only advice is to go for it. Don’t put it off until everything is perfect. It will never be the perfect time to start a business. Etsy is very inexpensive and it’s OK to make mistakes. I made some mistakes when I first started but it was all easily remedied.

If you do decide to go for it, my other advice is to use social media for marketing. Don’t just share information about your product but share information about yourself, too. People want to know about the creator almost as much as they want to know about the product, especially when it comes to creative work.

 

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PatientsLikeMe usability study for mobile app

Posted June 3rd, 2015 by

Designing a new app is like designing a car. Your engineer and designer may have done a flawless job, but nothing matters until the person actually steps into the driver’s seat and test-drives the product. So when it came time for us to launch the first pass at our new mobile app, called PLM Connect, that’s exactly what we did. We invited a handful of members to come into the PatientsLikeMe office and test-drive the app.

Alex (ITalkToTheWind), a PatientsLikeMe community member, took some extra time to share about her experiences testing the app in an interview. One of the features, InstantMe, is a tool on the PatientsLikeMe website that’s a simple way to track and share how you’re doing. In this first pass of the app, and since she’s become a member in 2010, Alex has posted more than 1500 (!) InstantMe updates. Not only was she extremely helpful with her feedback, but she also brought in the artwork she’s created based on her InstantMe entries. Everyone on the PatientsLikeMe team was honored that Alex brought her art into the office for us to see, and we wanted to share it with the rest of the community, too. Here’s her story: 

Alex, what was it like doing the usability testing?
It was great to come down to the PatientsLikeMe headquarters to give my personal feedback on the first pass at PLM Connect.

I update my InstantMe every day, so I’ve been very eager for an application I can use while I am away from my computer so my charts can be as accurate as possible. Throughout testing the beta application, I got to dictate my thought process step by step with the engineering team. I communicated different ways to improve the application’s features, programming and design to make it more user-friendly and to have it operate more smoothly.

I also got to tell the team what my personal wants would be for a PatientsLikeMe application. Since I am an artist, it was great to be able to talk about how the design could compliment the different functions of the application. I mentioned how important it is to carry over the community and support aspect that is available at the main site over to the application. Overall, I was trying to think about the entire diversity of conditions in the community and how they could benefit using the application, and how to make it as easy to use as possible.

How do you use InstantMe on PatientsLikeMe?
I’ve been using InstantMe religiously to keep track of my moods for five years now, since I was diagnosed with my primary condition and began my treatment process. I basically see everything I’ve accumulated through my InstantMe as a diary of my life for the past 5 years.

It is very important to me to see how my treatments, symptoms, and life events all correlate with my moods to understand what is or isn’t currently working, and what has or hasn’t worked in the past, especially in a visual way. I’ve been able to keep track of absolutely everything I’ve tried to treat my conditions including medication, herbal supplements, vitamins, diets, different therapists and therapeutic approaches, exercise, lifestyle changes and meditation.

InstantMe also gives you the option to explain “Why” you are experiencing your mood, which has been crucial to me in reflecting on the moments that seemed so difficult at the time.

Another interesting part of that feature is reviewing how my automatic thoughts have changed through my treatment process, which is also really important for someone who suffers from mood swings like I do. I react differently now to difficult life events and can see how I’ve been better able cope with stress over the five years. It’s really nice to see how far I’ve come. 

Will you share a little about your InstantMe artwork?
My work is about the disconnect that occurs with one’s experiences and personal identity over time. I make paintings and drawings using my InstantMe mood logs, and other PatientsLikeMe charts by transferring them onto a physical material such as a wooden panel or paper.

I correlate the text from the InstantMe’s to remember why I was feeling good, bad or neutral and paint symbols to represent that time period, or draw the mood logs themselves into a painted environment or memory in which I was experiencing that mood.

It’s a lot about trying to gain a connection with these fleeting moments and my shifting identity over time and learning to accept them … the process of creating the artwork itself helps me cope with my condition.

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Art as Therapy in Parkinson’s Disease

Posted October 23rd, 2012 by

Do you have a creative outlet that helps you cope with your health condition?  Here are two examples of Parkinson’s disease (PD) patients in our community who are expressing their emotions through painting, despite hand tremors and other challenging symptoms.  (See even more PD patient artwork in this inspiring forum thread.)

"Iggy the Iguana" by PD member mezzomom

“Iggy the Iguana” by PD member mezzomom

"Autumn Still Life with Mouse" by PD Artist J. Marley, who learned to paint with his non-dominant hand after developing tremors

“Autumn Still Life with Mouse” by PD member J. Marley

If you’re a PD patient with an artistic bent, we encourage you to share your work with our community.  You may also want to participate in the Parkinson’s Disease Foundation’s Creativity and Parkinson’s Project, which “exists to explore, support and encourage the therapeutic value of creativity in Parkinson’s.”  Paintings, drawings, photographs, songs, crafts and more are displayed in the project’s Gallery of Artwork, and a wall calendar is created each year featuring the work of 13 selected artists.

Notice of Copyright: The works of art featured in this post are displayed with the written consent of the artist and/or current owner. These parties retain exclusive rights of reproduction and distribution. Any unauthorized reproduction or download of content in any form is a violation of the artist’s copyright and is prohibited.