JOYFUL WORKERS highlights people who created new lives after chronic illness and/or disability robbed them of careers or opportunities.
Cam's Joyful Work- author, pet sitter, Reiki practitioner and wedding celebrant
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I'm Cameron Auxer, creator of Pajama Daze. It’s high time I wrote about what led me to my Joyful Work!
I had a number of careers and jobs over the years, mostly in media but also in community health education, and of course, the jobs that just paid the bills - working in a laundromat, at a residential boarding school in rural Australia, at a few universities, and freelance writing and photography. In 2004, I made the decision to finally make one of my dreams come true - to become a Naturopath. I quit my job, moving from rural Australia back to the city, and started attending a school for Naturopathy. I had such a passionate obsession with natural health and healing that it was an easy curriculum, though I admit that the chemistry class had me sweating a bit.
At the time, I was also assisting a community in rural Western Australia to create a non-profit group to fight a giant multinational company that was poisoning the people and the land and using slippery tactics to manipulate residents impacted by the pollution. Talk about stress. Between the meetings, the submissions to the government, media interviews, a new relationship, not to mention going to school at the same time and having my car stolen, I could feel the tension making my body, especially my chest, feel tight.
As we wrapped up a community informational meeting one weekend, I felt a tingly sensation go across my chest and down my arms, and then my arms began to feel heavy and painful. Thankfully, I had read a newspaper article the week before about women experiencing heart attacks differently than men. I told my partner, "Take me to the hospital; I think I am having a heart attack." Sure enough, I did. It was mild, diagnosed as Prinzmetal’s Angina (a form of vascular spasms that can cause mild heart attacks), and I was eventually sent home. A couple days later, it happened again, but this time, it felt like an elephant was sitting on my chest as I laid on the couch. Back into the ER I went, spending the night in the hospital, and was sent home with an order from my GP for a stress test to be done by another doctor. A few days later, during the stress test, my chest began to hurt. I informed the doctor, but he insisted I keep on going. I did, but finally had to stop. He wouldn't listen to me. I knew I was having another attack and he just thought I was being a hysterical woman. Back to the ER again, and, yes, I had had another attack. I ended up in the hospital, having an angiogram that showed my arteries clear but spasming, so the spasms caused the attacks, but it looked like I had also had a spontaneous coronary artery dissection (SCAD), as well. I was put on heart meds, which helped, but I continued to have low-key chest pains.
I moved in with my new partner out of necessity, and it didn’t take long for me or him to realize that something was very wrong with my brain. I could remember that I had asked a question but could not remember hearing an answer. I would ask the same question over and over. I knew I was frustrated, but according to my partner, I was very angry, too. This short-term memory loss, which was most likely due to lack of oxygen to my brain during the spasms, lasted for two months. It slowly got a bit better over time. I finally was able to take my final exams for the semester at home with a notary attending, but I cried through the tests because trying to remember what I had learned was like trying to wake up out of a nightmare. Somehow, I managed to pass, but the struggle was too much. Heartbroken, I quit school and gave up my dream.
The whole episode did something else to my body: who knows what or why, but I ended up with serious chronic fatigue that would continue to plague me for 10 years and continue to relapse on occasion to this day. I moved back to the States three years after the attacks, a couple years after my mother died, to look after my father, though I was still suffering from the fatigue and chest pains. After a week staying with Dad, until I could find my own place, I had heart attack number four. I was put on long-acting nitroglycerine by a local cardiologist in hopes of putting the kibosh on the continuing discomfort, but that just made my migraines worse. After an extensive search for a specialist who did research into women’s heart disease, I found a cardiologist in Pittsburgh who put me on an amino acid, L-arginine, that fixed the spasms. I am constantly monitored, even though my arteries and my heart have behaved. But it became apparent that I had to avoid stressful situations as much as possible, as that’s what seemed to trigger the episodes.
I spent a lot of time in bed or on my recliner when I wasn’t at my father’s house assisting him. I got active on social media once I discovered that there were other people dealing with chronic illness like me, and I made valuable connections that provided both support and friendship while being isolated much of the time. I wanted to give back to that community and came up with the idea for this website, Pajama Daze.
The heart specialist had also discovered that I had noisy pulsations in my carotid arteries. After an MRA, he determined that I had a rare, incurable disease called fibromuscular dysplasia (FMD), which is visibly seen in twisted and tortuous arteries, and has also been found to cause problems with connective tissue throughout your body. The gene variant that causes it is also associated with Ehlers-Danlos Syndrome. Finally, I learned why my joints were so wonky and painful, and where the dizzy spells and migraines I had for years could have come from. But I also learned that SCAD is also associated with FMD. I was able to find a program at Mass General in Boston that was doing research into FMD, so I started traveling there twice a year to see the team of doctors that monitored my condition and treated the FMD with the same medications that I required for heart health. Fortunately, I had family in the Boston area with whom I could stay.
I was not well enough to work during those years, so was living on Social Security Disability. Even when the chronic fatigue got better in 2015, I still had my limits with energy and my memory, and I knew that I needed to avoid stressful situations. I had a brainstorm and reached out to the people who had contributed submissions to the Pajama Daze website, and pitched the idea of creating a book together that told the story of our chronic illness journeys, plus essays about how we make our lives with chronic illness better. Thirty-one contributors provided their stories and essays. I wrote my own material and some of the content for others who were too ill to handle it, as well as editing the material and putting it all together into a book. Three years later, When Bodies Break: How We Survive and Thrive with Illness and Disability was published.
That was 2018. I had just moved to New Hampshire several months before to be closer to family after my father died, as well as having easier access to my health care through Mass General Hospital. The first day I arrived, I learned that my sister, an MS and chronic pain patient, had taken her life because of not being able to get pain medication. Two weeks later, I was diagnosed with a tricky breast cancer and started chemo and targeted drugs soon after that. Radiation followed. Once again, I was spending a lot of time in bed. It took a year to recover from the side effects of the treatments. The grief still hung around.
As I started to feel better, regaining some energy and getting more plugged into my new home – a tiny town in the mountains that was a virtual vortex of creative energy, offering an endless supply of things to see, do and learn – I realized that I needed more income than Social Security and the little bit of money my father left me that I was living on. There were so many things that I wanted to participate in, but that takes money. And New England is not a cheap place to live. Full-time work was out of the question (I was 64 at the time and aging was beginning to add to my health challenges, including arthritis, degenerative disc disease and pain from Ehlers-Danlos). I was bound and determined that if I had to work again, out of necessity, it would have to be: 1/something that I could handle physically with my pain and fluctuating energy levels, 2/something that I loved and that brought me joy, and 3/something with which I had experience.
I had already been a writer most of my life, so I knew I could continue to do that whenever I wanted. I had been doing Reiki for almost 30 years at the time, so perhaps I could do that to make some extra cash. But then the pandemic hit. Lots of time confined at home, once again. It also meant lots of time to think. I realized that I had some good experience under my belt doing house and pet sitting for friends. That was something I truly enjoyed, and I was very good at doing it.
I started plotting what I needed to do to start an actual business as a pet/house sitter. I realized it required very little overhead and I could take on as much or as little business as I wanted or was able to. I took an online class on pet first aid, offered by the American Red Cross. I was able to find insurance online that covered both house and pet sitters. I had some business cards made and I created a brochure on my computer. When people started traveling again during a slowdown in Covid cases, I posted about my services on my town’s Facebook page. It didn’t take long to build a thriving business. I have been in business for over 2 years now, and I love it. I focus on making my clients’ lives easier and to give them peace of mind. One client told me I was the “gold standard” of pet sitters around here. I already have bookings in February through May of 2024! I take new clients on occasion, but I get booked up pretty fast. However, I have learned to leave time for myself in my scheduling and to give business to other pet sitters when I need a break or am fatigued or unwell.
Pet and house sitting is an easy business to manage. I keep track of income earned with copies of the customers’ receipts, mileage with my calendar which shows when and where I traveled and with my Maps app which calculates mileage for me, and I keep receipts of all my expenses, including food I eat on-site. I give it all to my tax accountant and let her figure things out. I manage my bookings with my calendar app on my phone as well as a daily planner, which I keep in sync together. I keep a file of information forms that clients fill out with all the pertinent info I need to know about the pets, their home and how to get in touch with them while they are away, plus emergency contacts. And when I need more business, which doesn’t happen often because of return customers and word-of-mouth, I just post my availability on my town’s Facebook page and I usually get a response!
I hadn’t planned on becoming a pet sitter initially. I was hoping to make weddings my business and pet sit on the side. When my niece asked me to be the celebrant for her wedding, I became an ordained minister through Universal Life Church. I have performed two family weddings, and what JOY! Tell me, what other job can you create where there will be a party waiting to happen when you get there?! As my pet sitting business boomed so quickly, I realized that weddings would have to go onto the back burner, but I hope one of these days, perhaps when I need to slow down or discontinue the pet sitting, I can make a business out of celebrating the union of people who want to share their lives together.
I also had a little job as the Reiki practitioner for a lovely spa for a while. I love helping people feel better. They’ve come to me with many different ailments and various emotional upsets. When they tell me how much difference my treatment made for them, THAT gives me a ton of joy! Plus, when I give Reiki, I also receive it, so I get a real benefit of comfort and healing, as well. But bookings became sparse, so I ended up providing my services on-call, which sometimes interfered with my pet sitting business. As the economy continued to tank, my bookings for Reiki disappeared at the spa.
Because of my hip and leg issues, I can no longer do dog walking as part of my business, and as I age, I know that it will get tougher for me to carry my belongings to and from my clients’ homes, before and after a sitting job. Reiki I can do sitting down and it is very passive. I hope that when I can no longer do pet sitting, that I can do Reiki in my own studio.
I feel I have more control of my life - my well-being, my financial health and my time – owning my own business. And the joy I feel, being able to cuddle and care for beautiful creatures as I pet sit, helping someone in pain to feel more comfortable with Reiki, seeing the book I published on a book store’s shelf and hearing how it helped a reader, or celebrating a couple’s commitment to each other, is the biggest reward of them all. Always look for the joy.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
I'm Cameron Auxer, creator of Pajama Daze. It’s high time I wrote about what led me to my Joyful Work!
I had a number of careers and jobs over the years, mostly in media but also in community health education, and of course, the jobs that just paid the bills - working in a laundromat, at a residential boarding school in rural Australia, at a few universities, and freelance writing and photography. In 2004, I made the decision to finally make one of my dreams come true - to become a Naturopath. I quit my job, moving from rural Australia back to the city, and started attending a school for Naturopathy. I had such a passionate obsession with natural health and healing that it was an easy curriculum, though I admit that the chemistry class had me sweating a bit.
At the time, I was also assisting a community in rural Western Australia to create a non-profit group to fight a giant multinational company that was poisoning the people and the land and using slippery tactics to manipulate residents impacted by the pollution. Talk about stress. Between the meetings, the submissions to the government, media interviews, a new relationship, not to mention going to school at the same time and having my car stolen, I could feel the tension making my body, especially my chest, feel tight.
As we wrapped up a community informational meeting one weekend, I felt a tingly sensation go across my chest and down my arms, and then my arms began to feel heavy and painful. Thankfully, I had read a newspaper article the week before about women experiencing heart attacks differently than men. I told my partner, "Take me to the hospital; I think I am having a heart attack." Sure enough, I did. It was mild, diagnosed as Prinzmetal’s Angina (a form of vascular spasms that can cause mild heart attacks), and I was eventually sent home. A couple days later, it happened again, but this time, it felt like an elephant was sitting on my chest as I laid on the couch. Back into the ER I went, spending the night in the hospital, and was sent home with an order from my GP for a stress test to be done by another doctor. A few days later, during the stress test, my chest began to hurt. I informed the doctor, but he insisted I keep on going. I did, but finally had to stop. He wouldn't listen to me. I knew I was having another attack and he just thought I was being a hysterical woman. Back to the ER again, and, yes, I had had another attack. I ended up in the hospital, having an angiogram that showed my arteries clear but spasming, so the spasms caused the attacks, but it looked like I had also had a spontaneous coronary artery dissection (SCAD), as well. I was put on heart meds, which helped, but I continued to have low-key chest pains.
I moved in with my new partner out of necessity, and it didn’t take long for me or him to realize that something was very wrong with my brain. I could remember that I had asked a question but could not remember hearing an answer. I would ask the same question over and over. I knew I was frustrated, but according to my partner, I was very angry, too. This short-term memory loss, which was most likely due to lack of oxygen to my brain during the spasms, lasted for two months. It slowly got a bit better over time. I finally was able to take my final exams for the semester at home with a notary attending, but I cried through the tests because trying to remember what I had learned was like trying to wake up out of a nightmare. Somehow, I managed to pass, but the struggle was too much. Heartbroken, I quit school and gave up my dream.
The whole episode did something else to my body: who knows what or why, but I ended up with serious chronic fatigue that would continue to plague me for 10 years and continue to relapse on occasion to this day. I moved back to the States three years after the attacks, a couple years after my mother died, to look after my father, though I was still suffering from the fatigue and chest pains. After a week staying with Dad, until I could find my own place, I had heart attack number four. I was put on long-acting nitroglycerine by a local cardiologist in hopes of putting the kibosh on the continuing discomfort, but that just made my migraines worse. After an extensive search for a specialist who did research into women’s heart disease, I found a cardiologist in Pittsburgh who put me on an amino acid, L-arginine, that fixed the spasms. I am constantly monitored, even though my arteries and my heart have behaved. But it became apparent that I had to avoid stressful situations as much as possible, as that’s what seemed to trigger the episodes.
I spent a lot of time in bed or on my recliner when I wasn’t at my father’s house assisting him. I got active on social media once I discovered that there were other people dealing with chronic illness like me, and I made valuable connections that provided both support and friendship while being isolated much of the time. I wanted to give back to that community and came up with the idea for this website, Pajama Daze.
The heart specialist had also discovered that I had noisy pulsations in my carotid arteries. After an MRA, he determined that I had a rare, incurable disease called fibromuscular dysplasia (FMD), which is visibly seen in twisted and tortuous arteries, and has also been found to cause problems with connective tissue throughout your body. The gene variant that causes it is also associated with Ehlers-Danlos Syndrome. Finally, I learned why my joints were so wonky and painful, and where the dizzy spells and migraines I had for years could have come from. But I also learned that SCAD is also associated with FMD. I was able to find a program at Mass General in Boston that was doing research into FMD, so I started traveling there twice a year to see the team of doctors that monitored my condition and treated the FMD with the same medications that I required for heart health. Fortunately, I had family in the Boston area with whom I could stay.
I was not well enough to work during those years, so was living on Social Security Disability. Even when the chronic fatigue got better in 2015, I still had my limits with energy and my memory, and I knew that I needed to avoid stressful situations. I had a brainstorm and reached out to the people who had contributed submissions to the Pajama Daze website, and pitched the idea of creating a book together that told the story of our chronic illness journeys, plus essays about how we make our lives with chronic illness better. Thirty-one contributors provided their stories and essays. I wrote my own material and some of the content for others who were too ill to handle it, as well as editing the material and putting it all together into a book. Three years later, When Bodies Break: How We Survive and Thrive with Illness and Disability was published.
That was 2018. I had just moved to New Hampshire several months before to be closer to family after my father died, as well as having easier access to my health care through Mass General Hospital. The first day I arrived, I learned that my sister, an MS and chronic pain patient, had taken her life because of not being able to get pain medication. Two weeks later, I was diagnosed with a tricky breast cancer and started chemo and targeted drugs soon after that. Radiation followed. Once again, I was spending a lot of time in bed. It took a year to recover from the side effects of the treatments. The grief still hung around.
As I started to feel better, regaining some energy and getting more plugged into my new home – a tiny town in the mountains that was a virtual vortex of creative energy, offering an endless supply of things to see, do and learn – I realized that I needed more income than Social Security and the little bit of money my father left me that I was living on. There were so many things that I wanted to participate in, but that takes money. And New England is not a cheap place to live. Full-time work was out of the question (I was 64 at the time and aging was beginning to add to my health challenges, including arthritis, degenerative disc disease and pain from Ehlers-Danlos). I was bound and determined that if I had to work again, out of necessity, it would have to be: 1/something that I could handle physically with my pain and fluctuating energy levels, 2/something that I loved and that brought me joy, and 3/something with which I had experience.
I had already been a writer most of my life, so I knew I could continue to do that whenever I wanted. I had been doing Reiki for almost 30 years at the time, so perhaps I could do that to make some extra cash. But then the pandemic hit. Lots of time confined at home, once again. It also meant lots of time to think. I realized that I had some good experience under my belt doing house and pet sitting for friends. That was something I truly enjoyed, and I was very good at doing it.
I started plotting what I needed to do to start an actual business as a pet/house sitter. I realized it required very little overhead and I could take on as much or as little business as I wanted or was able to. I took an online class on pet first aid, offered by the American Red Cross. I was able to find insurance online that covered both house and pet sitters. I had some business cards made and I created a brochure on my computer. When people started traveling again during a slowdown in Covid cases, I posted about my services on my town’s Facebook page. It didn’t take long to build a thriving business. I have been in business for over 2 years now, and I love it. I focus on making my clients’ lives easier and to give them peace of mind. One client told me I was the “gold standard” of pet sitters around here. I already have bookings in February through May of 2024! I take new clients on occasion, but I get booked up pretty fast. However, I have learned to leave time for myself in my scheduling and to give business to other pet sitters when I need a break or am fatigued or unwell.
Pet and house sitting is an easy business to manage. I keep track of income earned with copies of the customers’ receipts, mileage with my calendar which shows when and where I traveled and with my Maps app which calculates mileage for me, and I keep receipts of all my expenses, including food I eat on-site. I give it all to my tax accountant and let her figure things out. I manage my bookings with my calendar app on my phone as well as a daily planner, which I keep in sync together. I keep a file of information forms that clients fill out with all the pertinent info I need to know about the pets, their home and how to get in touch with them while they are away, plus emergency contacts. And when I need more business, which doesn’t happen often because of return customers and word-of-mouth, I just post my availability on my town’s Facebook page and I usually get a response!
I hadn’t planned on becoming a pet sitter initially. I was hoping to make weddings my business and pet sit on the side. When my niece asked me to be the celebrant for her wedding, I became an ordained minister through Universal Life Church. I have performed two family weddings, and what JOY! Tell me, what other job can you create where there will be a party waiting to happen when you get there?! As my pet sitting business boomed so quickly, I realized that weddings would have to go onto the back burner, but I hope one of these days, perhaps when I need to slow down or discontinue the pet sitting, I can make a business out of celebrating the union of people who want to share their lives together.
I also had a little job as the Reiki practitioner for a lovely spa for a while. I love helping people feel better. They’ve come to me with many different ailments and various emotional upsets. When they tell me how much difference my treatment made for them, THAT gives me a ton of joy! Plus, when I give Reiki, I also receive it, so I get a real benefit of comfort and healing, as well. But bookings became sparse, so I ended up providing my services on-call, which sometimes interfered with my pet sitting business. As the economy continued to tank, my bookings for Reiki disappeared at the spa.
Because of my hip and leg issues, I can no longer do dog walking as part of my business, and as I age, I know that it will get tougher for me to carry my belongings to and from my clients’ homes, before and after a sitting job. Reiki I can do sitting down and it is very passive. I hope that when I can no longer do pet sitting, that I can do Reiki in my own studio.
I feel I have more control of my life - my well-being, my financial health and my time – owning my own business. And the joy I feel, being able to cuddle and care for beautiful creatures as I pet sit, helping someone in pain to feel more comfortable with Reiki, seeing the book I published on a book store’s shelf and hearing how it helped a reader, or celebrating a couple’s commitment to each other, is the biggest reward of them all. Always look for the joy.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Whitney's Joyful Work - artistic photography and volunteering for a non-profit (Indigo Wings)
My name is Whitney and I am an artist at Indigo Wings. Indigo Wings is a non-profit that provides opportunities for disabled artists to become more financially and vocationally independent.
Photography has always been a passion of mine, and I attended a small University to obtain a degree in Graphic Design. Photoshop allows me to take my pictures to a different level, expressing the hidden elements and highlighting detail that deserves prominence.
I was exposed to alcohol and drugs in utero. I have an anxiety disorder, depression, and a closed head injury resulting in a severe right hemispheric dysfunction with Obsessive-Compulsive tendencies, and Fibromyalgia. These issues affect me daily. I second guess myself a lot. Ordering a pizza or setting up appointments can oftentimes seem insurmountable. With OCD, I get stuck in a loop of thoughts and have to work to get out of them. Fibromyalgia causes me varying amounts of pain daily.
I live with Depression every day. My bad thoughts can overwhelm me but I’m working through them. Some days are a struggle. If only I had Situational Depression, as that can be cured. Don’t ask me “how long it will be until I’m done.” I’m working on it!
Crowds of two or more people are usually overwhelming. This anxiety has cost me opportunities. I know that you can't always avoid those situations, but they make me feel uneasy at best, and panicky at worst. Sometimes I dial myself down. I worry that people won't like me, but I’m working to accept that I don't have to change myself to please other people. Even when I was young I did not like to bring attention to myself.
I am biracial, adopted into a white family. My birth mother struggled with alcoholism and an addiction to drugs. She knew that she was not well enough to take care of me so she chose to put me up for adoption; she even chose the family. I had visits with her over the years but she passed away when I was 9. I still miss her. I wish I would have been able to know her as an adult, and wonder what she would think of me. I have had a good relationship with her family, especially her mother and father (who passed away last year). My parents encouraged this relationship because they understood how important it would be to me.
I dealt with bullying early in my life because of my background. My mother was Caucasian and my father was Caucasian/African American. I was unsure of my identity for a good chunk of my life: for some people, I wasn't white enough; for some, I wasn't black enough. All I wanted was to fit in and not get the attention. I didn't like being questioned about my race. I was told I had to choose one race or the other; I couldn’t be both. I did not want to choose, so I questioned my identity, wondering if I’d ever fit in.
From kindergarten to 12th grade I was bullied. A lot of kids would make mean comments: I got called ugly and teased for the way I talked. Middle school was really tough, and I started cutting myself. This went on until my senior year of high school, when I was also cyber-bullied. Even after that I had some slip-ups over the years. I learned that isn’t the way to solve problems and realized I was affecting others more than I knew. You can't hide something like that for long. Wearing long sleeves and pants was a way of covering it up, but some people saw the wounds and scars.
I felt a lot of shame. I was quiet and kept to myself. I was nice to everyone but people would still mess with me. I didn't tell my family and friends the full extent of the bullying; I just held it inside and kept it to myself, not wanting to burden others. I felt angry and super depressed for a long time and felt I was really ugly. I felt like life was not worth living and I was not important to anyone. I had so many pent up emotions and didn’t know how to control or deal with them. It's hard when you feel that much despair to see the light at the end of the tunnel. I felt like it was never going to get better. I felt hopeless; even though I had some friends, I was afraid they would leave me if they knew how messed up I was.
I attempted suicide multiple times.
Finding a good therapist after many failed attempts, I finally realized that there is hope. Things do get better and I am glad I'm still alive. My closest friends and some special family members stuck with me and helped me see that suicide is not the answer. Sadly, there are few good community mental health services; some people never get the help they need. My mom had to fight to help me find people who could help.
While I struggled with strong emotions growing up, and my baby brain had to rewire itself to allow me to function, I feel all of this has contributed to who I am as an artist. The way I see things is different than anyone else I know and I have the talent to give others a glimpse into my world. Not everyone can do that!
Full time employment has eluded me. Many work environments are fast-paced and can feel overwhelming. While I am a hard worker, sometimes it just takes longer for me to complete tasks. Finding work in the right environment has been difficult. I worry that I will never find a place that can accommodate me.
Indigo Wings has helped me find a place where I can be creative and express myself. I am not very good at interacting with people socially. Being able to talk and interact with people online is easier for me. Volunteering to take on the role of managing Indigo Wing's social media was good for both me and the organization. This is another way that I can contribute, in addition to my art, helping me feel like I am a productive part of society.
Photography has always been a passion of mine, and I attended a small University to obtain a degree in Graphic Design. Photoshop allows me to take my pictures to a different level, expressing the hidden elements and highlighting detail that deserves prominence.
I was exposed to alcohol and drugs in utero. I have an anxiety disorder, depression, and a closed head injury resulting in a severe right hemispheric dysfunction with Obsessive-Compulsive tendencies, and Fibromyalgia. These issues affect me daily. I second guess myself a lot. Ordering a pizza or setting up appointments can oftentimes seem insurmountable. With OCD, I get stuck in a loop of thoughts and have to work to get out of them. Fibromyalgia causes me varying amounts of pain daily.
I live with Depression every day. My bad thoughts can overwhelm me but I’m working through them. Some days are a struggle. If only I had Situational Depression, as that can be cured. Don’t ask me “how long it will be until I’m done.” I’m working on it!
Crowds of two or more people are usually overwhelming. This anxiety has cost me opportunities. I know that you can't always avoid those situations, but they make me feel uneasy at best, and panicky at worst. Sometimes I dial myself down. I worry that people won't like me, but I’m working to accept that I don't have to change myself to please other people. Even when I was young I did not like to bring attention to myself.
I am biracial, adopted into a white family. My birth mother struggled with alcoholism and an addiction to drugs. She knew that she was not well enough to take care of me so she chose to put me up for adoption; she even chose the family. I had visits with her over the years but she passed away when I was 9. I still miss her. I wish I would have been able to know her as an adult, and wonder what she would think of me. I have had a good relationship with her family, especially her mother and father (who passed away last year). My parents encouraged this relationship because they understood how important it would be to me.
I dealt with bullying early in my life because of my background. My mother was Caucasian and my father was Caucasian/African American. I was unsure of my identity for a good chunk of my life: for some people, I wasn't white enough; for some, I wasn't black enough. All I wanted was to fit in and not get the attention. I didn't like being questioned about my race. I was told I had to choose one race or the other; I couldn’t be both. I did not want to choose, so I questioned my identity, wondering if I’d ever fit in.
From kindergarten to 12th grade I was bullied. A lot of kids would make mean comments: I got called ugly and teased for the way I talked. Middle school was really tough, and I started cutting myself. This went on until my senior year of high school, when I was also cyber-bullied. Even after that I had some slip-ups over the years. I learned that isn’t the way to solve problems and realized I was affecting others more than I knew. You can't hide something like that for long. Wearing long sleeves and pants was a way of covering it up, but some people saw the wounds and scars.
I felt a lot of shame. I was quiet and kept to myself. I was nice to everyone but people would still mess with me. I didn't tell my family and friends the full extent of the bullying; I just held it inside and kept it to myself, not wanting to burden others. I felt angry and super depressed for a long time and felt I was really ugly. I felt like life was not worth living and I was not important to anyone. I had so many pent up emotions and didn’t know how to control or deal with them. It's hard when you feel that much despair to see the light at the end of the tunnel. I felt like it was never going to get better. I felt hopeless; even though I had some friends, I was afraid they would leave me if they knew how messed up I was.
I attempted suicide multiple times.
Finding a good therapist after many failed attempts, I finally realized that there is hope. Things do get better and I am glad I'm still alive. My closest friends and some special family members stuck with me and helped me see that suicide is not the answer. Sadly, there are few good community mental health services; some people never get the help they need. My mom had to fight to help me find people who could help.
While I struggled with strong emotions growing up, and my baby brain had to rewire itself to allow me to function, I feel all of this has contributed to who I am as an artist. The way I see things is different than anyone else I know and I have the talent to give others a glimpse into my world. Not everyone can do that!
Full time employment has eluded me. Many work environments are fast-paced and can feel overwhelming. While I am a hard worker, sometimes it just takes longer for me to complete tasks. Finding work in the right environment has been difficult. I worry that I will never find a place that can accommodate me.
Indigo Wings has helped me find a place where I can be creative and express myself. I am not very good at interacting with people socially. Being able to talk and interact with people online is easier for me. Volunteering to take on the role of managing Indigo Wing's social media was good for both me and the organization. This is another way that I can contribute, in addition to my art, helping me feel like I am a productive part of society.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Lauren's Joyful Work - studying marketing at college and interning in financial services
Hello! I’m Lauren Naylor, an 18-year-old who has been living with a chronic illness for over two years. Before Reflex Neurovascular Dystrophy (RND) entered my life at the age of 15, I was a pretty normal high school student, always attending classes, maintaining good grades and higher level classes, playing basketball for the school team and being an active secretary for our local chapter of Technology Student Association. My future looked very promising and felt like nothing could hold me back.
My life came crashing to a halt during a sophomore year basketball game. I had just undergone laparoscopic surgery less than 2 months before this game in and around my sternum to remove my gallbladder and unblock my celiac artery that was being pressed in by a ligament. During the game, I was elbowed in the chest, which is pretty common during girl’s high school basketball. What isn’t common is the result of that simple injury on my life, so simple I never would have remembered it. About a week after the game, I started waking up with intense chest pain. I was referred to a pain management specialist by the surgeon. But after having multiple steroid injections into my chest to try and alleviate the pain throughout the day, the pain remained. The pain management specialist referred me to the Children’s Institute of Pittsburgh after unofficially diagnosing me with reflex neurovascular dystrophy. After an examination at the institute, it was official. I have RND. I was almost halfway through my junior year of high school.
Reflex neurovascular dystrophy (RND) occurs inside your body when you have a simple injury, such as a fall, twisted ankle, or your chest is elbowed. The brain’s nervous system continues to send pain signals to the injured area after the injury is healed. The pain can last a few months, a few years, or a lifetime. No x-rays can detect the illness, as real as it is. You can very much feel the pain, but nobody can see that you’re in pain. I was told my RND will always have the possibility of flaring up. The pain will intensify during exercise and stressful situations. To me, RND, Reflex Sympathetic Dystrophy (RSD), and Complex Regional Pain Syndrome (CRPS) all sound the same in terms of symptoms. The only difference I could find was that RSD and CRPS have more physical symptoms, such as a temperature change in the limbs and skin discoloration. However, RND is also sometimes categorized as RSD Type 1.
During my junior year, I was missing school at least 2 days a week because of the pain. The other 3 days, I would either go home early or come in late. My grades suffered tremendously. Try going to school only 2 days a week and understand material that you missed because of your illness. Not fun! I lost friends because they didn’t understand a pain they could not see. A few of my basketball teammates thought I was faking the pain so I wouldn’t have to play, and I missed out on my entire junior year of basketball. I had to take online school for half of my junior year so I could still learn while at home and not have the stress of physically going to school during the week.
Following my intense physical, occupational, and psychological therapy at the Children’s Institute that lasted a little under a week, I was feeling much better! I have only had two pain attacks in almost two years. What a victory! Having a chronic illness teaches you not to take any physical activities for granted, such as walking, running, lifting things, and playing sports. It also teaches you how to sympathize with people and pain, and understand that you cannot physically see everyone’s pain.
Coping with RND can be a struggle at first. I had to learn how to breathe and work through the pain. Know the pain won’t kill you and you’re stronger than the illness. Take advantages of the days when the pain is minimal and be productive!
I love being able to wake up almost every day pain free! I am currently pursuing my bachelor’s degree in marketing at Shippensburg University. At one point, college didn’t seem like an option because of how stressful it is and the effect of that on my pain levels, plus having to physically walk to class. It brings me immense joy to be able to keep up with my active friends and run around with them without the worry of a flare-up. I also intern at my Dad’s financial company, Naylor & Associates, which is a financial practice of Ameriprise Financial Services Inc. At the office, I help digitize and file client documents, maximize printer efficiency, and digitize newspaper articles (just to name a few of my jobs). I feel so blessed to be able to work at my father’s office and gain hands-on experience without having to worry about pain restricting me.
My advice to any young person going through a chronic illness like me is to not give up! Don’t let the illness define who you are. It’s okay to modify your schooling to fit your illness and take control of your education. Not everyone will understand, but don’t let that affect your outlook on life. It helps if you can personally talk to your teachers and explain what is going on in your life. If online school isn’t an option, I’m almost positive they will accommodate you in any way they can. God has big plans for you in your life, bigger than you could ever imagine! Praise him through the good and bad days. Also, make sure to keep your parents updated on your pain levels. They care about you and want to help you! I’m lucky to have amazing parents that advocated for me when I was too young. They believed me when I said I was in pain and didn’t stop until they found a solution.
I would love to hear your story if you’ve been through or going through a similar illness such as mine! Feel free to e-mail me at any time with questions or to share your story with me. I understand what you’re going through, you are not alone! [email protected]
My life came crashing to a halt during a sophomore year basketball game. I had just undergone laparoscopic surgery less than 2 months before this game in and around my sternum to remove my gallbladder and unblock my celiac artery that was being pressed in by a ligament. During the game, I was elbowed in the chest, which is pretty common during girl’s high school basketball. What isn’t common is the result of that simple injury on my life, so simple I never would have remembered it. About a week after the game, I started waking up with intense chest pain. I was referred to a pain management specialist by the surgeon. But after having multiple steroid injections into my chest to try and alleviate the pain throughout the day, the pain remained. The pain management specialist referred me to the Children’s Institute of Pittsburgh after unofficially diagnosing me with reflex neurovascular dystrophy. After an examination at the institute, it was official. I have RND. I was almost halfway through my junior year of high school.
Reflex neurovascular dystrophy (RND) occurs inside your body when you have a simple injury, such as a fall, twisted ankle, or your chest is elbowed. The brain’s nervous system continues to send pain signals to the injured area after the injury is healed. The pain can last a few months, a few years, or a lifetime. No x-rays can detect the illness, as real as it is. You can very much feel the pain, but nobody can see that you’re in pain. I was told my RND will always have the possibility of flaring up. The pain will intensify during exercise and stressful situations. To me, RND, Reflex Sympathetic Dystrophy (RSD), and Complex Regional Pain Syndrome (CRPS) all sound the same in terms of symptoms. The only difference I could find was that RSD and CRPS have more physical symptoms, such as a temperature change in the limbs and skin discoloration. However, RND is also sometimes categorized as RSD Type 1.
During my junior year, I was missing school at least 2 days a week because of the pain. The other 3 days, I would either go home early or come in late. My grades suffered tremendously. Try going to school only 2 days a week and understand material that you missed because of your illness. Not fun! I lost friends because they didn’t understand a pain they could not see. A few of my basketball teammates thought I was faking the pain so I wouldn’t have to play, and I missed out on my entire junior year of basketball. I had to take online school for half of my junior year so I could still learn while at home and not have the stress of physically going to school during the week.
Following my intense physical, occupational, and psychological therapy at the Children’s Institute that lasted a little under a week, I was feeling much better! I have only had two pain attacks in almost two years. What a victory! Having a chronic illness teaches you not to take any physical activities for granted, such as walking, running, lifting things, and playing sports. It also teaches you how to sympathize with people and pain, and understand that you cannot physically see everyone’s pain.
Coping with RND can be a struggle at first. I had to learn how to breathe and work through the pain. Know the pain won’t kill you and you’re stronger than the illness. Take advantages of the days when the pain is minimal and be productive!
I love being able to wake up almost every day pain free! I am currently pursuing my bachelor’s degree in marketing at Shippensburg University. At one point, college didn’t seem like an option because of how stressful it is and the effect of that on my pain levels, plus having to physically walk to class. It brings me immense joy to be able to keep up with my active friends and run around with them without the worry of a flare-up. I also intern at my Dad’s financial company, Naylor & Associates, which is a financial practice of Ameriprise Financial Services Inc. At the office, I help digitize and file client documents, maximize printer efficiency, and digitize newspaper articles (just to name a few of my jobs). I feel so blessed to be able to work at my father’s office and gain hands-on experience without having to worry about pain restricting me.
My advice to any young person going through a chronic illness like me is to not give up! Don’t let the illness define who you are. It’s okay to modify your schooling to fit your illness and take control of your education. Not everyone will understand, but don’t let that affect your outlook on life. It helps if you can personally talk to your teachers and explain what is going on in your life. If online school isn’t an option, I’m almost positive they will accommodate you in any way they can. God has big plans for you in your life, bigger than you could ever imagine! Praise him through the good and bad days. Also, make sure to keep your parents updated on your pain levels. They care about you and want to help you! I’m lucky to have amazing parents that advocated for me when I was too young. They believed me when I said I was in pain and didn’t stop until they found a solution.
I would love to hear your story if you’ve been through or going through a similar illness such as mine! Feel free to e-mail me at any time with questions or to share your story with me. I understand what you’re going through, you are not alone! [email protected]
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Julie's Joyful Work - Writer, Editor, Holistic Life Coach and Meditation Teacher
I was first hit by chronic illness when I was 29. Perhaps it really started a year earlier when I took more than a month to get over a virus and was diagnosed with a post-viral fatigue. At the time I thought I was at the peak of my health. I had an active and demanding job as a Residential Social Worker and volunteered at a youth counselling agency. I was extremely fit: I did yoga every day and either swam, ran, or did aerobics about 5 times a week. I had a great social life but I didn’t sleep much! I also had a great passion for travelling. And then, suddenly, it was all snatched away. I couldn’t prepare myself a meal without feeling like I’d run a marathon and couldn’t even watch TV for more than half an hour before feeling mentally exhausted.
I was lucky to get a diagnosis as ‘Myalgic Encephalomyelitis' (also known as Chronic Fatigue, or ME/CFS) within about 3 months. At least I could slowly read up on what little was known about it. However, I got so little help from my doctors that I realised I had to learn to deal with it on my own. Things started to change for me once I allowed myself to grieve the active and fulfilling life that I had lost. Grieving lead to an acceptance that the illness could be with me for a long time, and life would have to be lived differently for a while.
As I got a little better I started attending a T’ai chi class, my interest sparked by the Taoist philosophy behind the teacher’s kind and gentle approach. I became much better at listening to my body, doing everything with an attitude of relaxed effortlessness, and working within the limitations imposed by the illness. After 6 months, I started back to work a few hours at a time. After another 6 months, I was working half time. But I knew that, even though I was doing a lot better, it wasn’t good for me to work when I was having a bad day, and there was no predicting my bad days when the rota was drawn up!
Accepting the chronic nature of ME/CFS, I resolved not to put my life on hold until I was better. I knew I just needed to learn how to live it in a different way to keep within my energy limits. I decided to leave work and go travelling again, heading off around South America. So what if I couldn’t walk the Inca trail? I could still visit Machu Picchu! So what if I couldn’t carry my backpack? I could get a taxi from the bus station to the hostel! The best thing about travelling was that I was wonderfully free to respond to how I was feeling on each day. I could do nothing on my bad days and it was very easy to pace! I had a wonderful time, and little by little my health improved.
By the time I returned to England, I had improved enough to live a relatively normal life, all be it a sedentary one. I was still unable to increase my physical activity without post-exertional malaise. I then decided to build on my Psychology Degree and take an Advanced Diploma in person-centred counselling. I knew I was good at it from my voluntary work, but had always resisted because I couldn’t imagine a job that involved sitting down all day! Now it fit much better with the way that ME/CFS dictated I live my life.
Whilst studying part-time, I worked as a Children’s Worker in a woman’s refuge and counselled in a young offenders institute on placement. I continued practising the way of being that I’d been learning through my interest in Taoist philosophy: Accepting my daily limitations, minimising both mental and physical exertion and approaching everything with an attitude of relaxed effortlessness. My health continued improving and I got a job managing children’s homes.
5 years after ME/CFS first hit me, I found myself looking down from the peak of a mountain (Helvellyn) I’d hiked up, feeling like a blind woman who had regained her sight. I knew I was well again, I had beaten this illness.
Unfortunately, that’s not the end of my story…..
With my full health returned, my itchy feet could no longer be ignored and I spent a couple of years working half a year, then traveling around Central America the other half. But when I returned, I found I still didn’t want to resume my career. Although it had been very rewarding, I’d felt out of balance; I’d been serious and responsible all the time. I wanted to be able to laugh and experience joy on a daily basis, not just if I tried hard on the weekend. Recovering from a chronic illness taught me how precious life was, and not to put up with an unsatisfactory lifestyle.
So I started my ‘live life for today’ career. I worked as a Holiday Rep, a Ski Guide and a Ski Instructor in the winters. In the summers I worked as a Walking Guide, Group Tour Leader and Hotel Receptionist. In between seasons, I picked cherries, I temped, I ‘wwoofed’ and did whatever I had to, to get by. And I experienced joy on a daily basis.
After 7 years of full and vibrant health I made the mistake of pushing myself through a virus whilst on a brief, between-season visit to family and friends. My first day back in Spain, I was horrified to realise I had all those familiar symptoms again. Determined to look on the bright side, I thought that if I rested and put all my previous learning back into action, it might just end up being a short term post-viral fatigue. My management kept my symptoms mild, but a couple of months later I suffered a new complication which perpetuated the illness.
I was fortunate to be able to continue working in a familiar and sedentary job as a hotel receptionist, but 3 years later, after learning to meditate at a yoga retreat, I suddenly knew that I wasn’t giving my health enough of a chance, working all the hours that I did. It also became clear to me that I needed to share all I’d learned about self-help. I made the decision to leave Spain and return to my parents’ house in England in order to write my book. I started blogging as the ME/CFS Self-Help Guru and later decided to qualify as a life coach. I also took a 5 month online-training course for social entrepreneurs, as I knew nothing about starting my own business.
I’m extremely grateful for today’s technology, which allows me to run my business from wherever I can get a good internet connection. I now spend my time between England and Spain, coaching people with energy-limiting chronic illness, via Skype, to live more relaxed, balanced and fulfilling lives, despite their illness. I also run online meditation courses, and write for and edit the inspirational corners of the ProHealth website. I love the variety of my wor,k and the fact that running my own business from home means I can easily fit things around the constraints of the illness. I set my own timetable, have long afternoon rests and make sure I don’t book more than two clients or classes in any day. Balance can be a bit of a challenge when you run your own business. I find it much easier when I’m in Spain. It’s a beautiful village, I grow my own vegetables in a small plot I share with friends and regularly go out for short walks. I’m not quite so skilled at the marketing side of my business as I am at coaching, so sometimes things are still a bit of a struggle. But I have great satisfaction that I am doing what I love to do: I’ve made it happen!
When I sit down to write an article or a blog post I’m very grateful to find that the words just flow. I also feel so privileged to be able to join others on their journey to better health and happiness, and be a part of how they blossom and grow. I believe that we each have many gifts to offer, and that even when chronic illness robs us of the ability to offer our gifts in a certain way, they are many other ways we can express ourselves in keeping with our new limitations. Earlier in my life it would never have occurred to me (or my English teacher!) that I could be a writer, but that’s now a part of how I have found a new way to be a Joyful W(orker!
I’m very excited about my next group coaching project, which will be more affordable way for those with chronic illness to access a life coaching program. You can learn more on my website (listed below) on the "coaching" page (scroll down to Group Program). Can I help you take a step towards being the next Joyful Worker?
I was lucky to get a diagnosis as ‘Myalgic Encephalomyelitis' (also known as Chronic Fatigue, or ME/CFS) within about 3 months. At least I could slowly read up on what little was known about it. However, I got so little help from my doctors that I realised I had to learn to deal with it on my own. Things started to change for me once I allowed myself to grieve the active and fulfilling life that I had lost. Grieving lead to an acceptance that the illness could be with me for a long time, and life would have to be lived differently for a while.
As I got a little better I started attending a T’ai chi class, my interest sparked by the Taoist philosophy behind the teacher’s kind and gentle approach. I became much better at listening to my body, doing everything with an attitude of relaxed effortlessness, and working within the limitations imposed by the illness. After 6 months, I started back to work a few hours at a time. After another 6 months, I was working half time. But I knew that, even though I was doing a lot better, it wasn’t good for me to work when I was having a bad day, and there was no predicting my bad days when the rota was drawn up!
Accepting the chronic nature of ME/CFS, I resolved not to put my life on hold until I was better. I knew I just needed to learn how to live it in a different way to keep within my energy limits. I decided to leave work and go travelling again, heading off around South America. So what if I couldn’t walk the Inca trail? I could still visit Machu Picchu! So what if I couldn’t carry my backpack? I could get a taxi from the bus station to the hostel! The best thing about travelling was that I was wonderfully free to respond to how I was feeling on each day. I could do nothing on my bad days and it was very easy to pace! I had a wonderful time, and little by little my health improved.
By the time I returned to England, I had improved enough to live a relatively normal life, all be it a sedentary one. I was still unable to increase my physical activity without post-exertional malaise. I then decided to build on my Psychology Degree and take an Advanced Diploma in person-centred counselling. I knew I was good at it from my voluntary work, but had always resisted because I couldn’t imagine a job that involved sitting down all day! Now it fit much better with the way that ME/CFS dictated I live my life.
Whilst studying part-time, I worked as a Children’s Worker in a woman’s refuge and counselled in a young offenders institute on placement. I continued practising the way of being that I’d been learning through my interest in Taoist philosophy: Accepting my daily limitations, minimising both mental and physical exertion and approaching everything with an attitude of relaxed effortlessness. My health continued improving and I got a job managing children’s homes.
5 years after ME/CFS first hit me, I found myself looking down from the peak of a mountain (Helvellyn) I’d hiked up, feeling like a blind woman who had regained her sight. I knew I was well again, I had beaten this illness.
Unfortunately, that’s not the end of my story…..
With my full health returned, my itchy feet could no longer be ignored and I spent a couple of years working half a year, then traveling around Central America the other half. But when I returned, I found I still didn’t want to resume my career. Although it had been very rewarding, I’d felt out of balance; I’d been serious and responsible all the time. I wanted to be able to laugh and experience joy on a daily basis, not just if I tried hard on the weekend. Recovering from a chronic illness taught me how precious life was, and not to put up with an unsatisfactory lifestyle.
So I started my ‘live life for today’ career. I worked as a Holiday Rep, a Ski Guide and a Ski Instructor in the winters. In the summers I worked as a Walking Guide, Group Tour Leader and Hotel Receptionist. In between seasons, I picked cherries, I temped, I ‘wwoofed’ and did whatever I had to, to get by. And I experienced joy on a daily basis.
After 7 years of full and vibrant health I made the mistake of pushing myself through a virus whilst on a brief, between-season visit to family and friends. My first day back in Spain, I was horrified to realise I had all those familiar symptoms again. Determined to look on the bright side, I thought that if I rested and put all my previous learning back into action, it might just end up being a short term post-viral fatigue. My management kept my symptoms mild, but a couple of months later I suffered a new complication which perpetuated the illness.
I was fortunate to be able to continue working in a familiar and sedentary job as a hotel receptionist, but 3 years later, after learning to meditate at a yoga retreat, I suddenly knew that I wasn’t giving my health enough of a chance, working all the hours that I did. It also became clear to me that I needed to share all I’d learned about self-help. I made the decision to leave Spain and return to my parents’ house in England in order to write my book. I started blogging as the ME/CFS Self-Help Guru and later decided to qualify as a life coach. I also took a 5 month online-training course for social entrepreneurs, as I knew nothing about starting my own business.
I’m extremely grateful for today’s technology, which allows me to run my business from wherever I can get a good internet connection. I now spend my time between England and Spain, coaching people with energy-limiting chronic illness, via Skype, to live more relaxed, balanced and fulfilling lives, despite their illness. I also run online meditation courses, and write for and edit the inspirational corners of the ProHealth website. I love the variety of my wor,k and the fact that running my own business from home means I can easily fit things around the constraints of the illness. I set my own timetable, have long afternoon rests and make sure I don’t book more than two clients or classes in any day. Balance can be a bit of a challenge when you run your own business. I find it much easier when I’m in Spain. It’s a beautiful village, I grow my own vegetables in a small plot I share with friends and regularly go out for short walks. I’m not quite so skilled at the marketing side of my business as I am at coaching, so sometimes things are still a bit of a struggle. But I have great satisfaction that I am doing what I love to do: I’ve made it happen!
When I sit down to write an article or a blog post I’m very grateful to find that the words just flow. I also feel so privileged to be able to join others on their journey to better health and happiness, and be a part of how they blossom and grow. I believe that we each have many gifts to offer, and that even when chronic illness robs us of the ability to offer our gifts in a certain way, they are many other ways we can express ourselves in keeping with our new limitations. Earlier in my life it would never have occurred to me (or my English teacher!) that I could be a writer, but that’s now a part of how I have found a new way to be a Joyful W(orker!
I’m very excited about my next group coaching project, which will be more affordable way for those with chronic illness to access a life coaching program. You can learn more on my website (listed below) on the "coaching" page (scroll down to Group Program). Can I help you take a step towards being the next Joyful Worker?
Website www.mecfsselfhelpguru.com
Email [email protected]
Facebook http://www.facebook.com/MecfsSelfHelpGuru
Twitter http://www.twitter.com/MECFSSelfhelpGu
Google+ http://plus.google.com/+Mecfsselfhelpguru1
Online meditation classes: https://spirit.learnitlive.com/JulieHolliday
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Email [email protected]
Facebook http://www.facebook.com/MecfsSelfHelpGuru
Twitter http://www.twitter.com/MECFSSelfhelpGu
Google+ http://plus.google.com/+Mecfsselfhelpguru1
Online meditation classes: https://spirit.learnitlive.com/JulieHolliday
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Erica's Joyful Work - Creating a Non-Profit Foundation for MS Fighters & their families
I am a 36-year-old mother of 3 and devoted wife. In the past 15 years I have worked with my husband in many ventures. I have also obtained my Bachelors in Education and MBA through Western Governor’s University (which I highly recommend to anyone wanting to further their education). I was active, rowdy, full of energy and always on the go. That all changed in 2015. I noticed one day in March that my left eye was blurry, nothing major, so I thought. On June 5th (which happened to be my birthday) I woke up and could not feel the left side of my chin, gum, and cheek. It felt much like the feeling one gets when they receive Novocain from a dentist. I went to the optometrist and my blood pressure was dangerously elevated; the Dr. thought I was having a stroke and sent me to an urgent care clinic. With two kids in tow, I rushed to the urgent care clinic where a CT Scan and mass amounts of bloodwork were done, all normal. The Dr ordered a MRI of the brain and suggested that I see a Neurologist.
This is where it gets tricky: I lived in a VERY rural part of northwestern Kansas. So rural, in fact, that the closest Wal-Mart was 2 hours away from my home. I began to do research and found a Neurologist in Denver, Colorado that could see me that week. I made the three-hour trip to Denver with MRI results in hand. The Dr. found 2 lesions on the brain and suspected Multiple Sclerosis but explained that diagnosis of MS could take some time. He ordered a 5-day regimen of IV steroids, an evoked potential test for my vision, and an MRI of the cervical spine to check for additional lesions. As I faced the three-hour drive home, I called my husband, my mother and my mother-in-law and told them all the news.
The next evening my Granny passed away, at my home-away-from-home in Texas, 6 hours away. I started IV therapy the following morning and had to work with my local hospital, as well as a hospital in Texas, in order to get the 5 days that were needed and still be able to attend her funeral. I received my 5th treatment the morning of her funeral, and drove 6 hours home the next day. It was a fast and furious week, to say the least.
I returned to the Dr. in Denver on July 29th to go over the results of the evoked potential test as well as my cervical spine MRI. This would be the day that my life changed forever. There were 3 lesions on the cervical spine MRI and the evoked potential test showed not only significant delay of the optic nerve in my left eye, but, additionally, my right eye showed some delay, as well. It was a definite diagnosis of Relapsing-Remitting Multiple Sclerosis and I needed to begin disease-delay treatment as soon as possible, which meant self-injections 3 times a week…..for the rest of my life.
I was devastated and scared. How could this be happening? Why is this happening? MS does not run in my family, and prior to March, I had no other signs or symptoms. I became depressed; I was giving up. The day before I started my injections my husband said to me, “Why are you giving up already? The woman I know is a fighter and faces everything head on. You never give up on anything. I feel like you are just rolling over and not fighting.” I was so mad at him for saying that. I cried, I got angry, I thought “How could he saw such things to me? Doesn’t he know that I’m sick?” He did know, and he accepted it, he supported me, but he didn’t like the attitude I had regarding the disease. He knew I was a fighter. He was right. It took a few weeks, but one night, as I lay in bed begging for sleep, something came over me. Something had to change.
That night I made a decision: I will not let MS define me, it will EMPOWER me. The next morning, I began the process of establishing the Keep S’Myelin Foundation of Hope. By the end of the day I had 2 t-shirt fundraisers launched and a website developed. This foundation will seek to provide both financial and non-financial support to MS patients and their families. There are programs available for help with medication, but what about the expenses incurred with travel to received treatment, office visit co-pays, assistance items not covered by insurance? In addition, I hope to establish scholarship funds for patients and families to better their education and offer training for work-from-home patients. It’s still in its infancy and I have a long way to go, but I will get there. For the first time in several months I am excited and passionate about something. I have a positive attitude about life and helping others like me. My husband, who is my biggest fan, is happy to see his wife back, and continues his support for me daily. He is truly amazing.
I encourage each and every person facing adversity to discover how they can impact the lives of others. Setting up a foundation can be daunting, but registering with the state and the IRS are the first steps, and there are websites available for creating non-profit organizations free of charge. I joined grassroots.org and have gotten a lot of information there. Every effort makes a difference, big or small. I’m hoping that with continued diligence and passion I can help many others like me.
This is where it gets tricky: I lived in a VERY rural part of northwestern Kansas. So rural, in fact, that the closest Wal-Mart was 2 hours away from my home. I began to do research and found a Neurologist in Denver, Colorado that could see me that week. I made the three-hour trip to Denver with MRI results in hand. The Dr. found 2 lesions on the brain and suspected Multiple Sclerosis but explained that diagnosis of MS could take some time. He ordered a 5-day regimen of IV steroids, an evoked potential test for my vision, and an MRI of the cervical spine to check for additional lesions. As I faced the three-hour drive home, I called my husband, my mother and my mother-in-law and told them all the news.
The next evening my Granny passed away, at my home-away-from-home in Texas, 6 hours away. I started IV therapy the following morning and had to work with my local hospital, as well as a hospital in Texas, in order to get the 5 days that were needed and still be able to attend her funeral. I received my 5th treatment the morning of her funeral, and drove 6 hours home the next day. It was a fast and furious week, to say the least.
I returned to the Dr. in Denver on July 29th to go over the results of the evoked potential test as well as my cervical spine MRI. This would be the day that my life changed forever. There were 3 lesions on the cervical spine MRI and the evoked potential test showed not only significant delay of the optic nerve in my left eye, but, additionally, my right eye showed some delay, as well. It was a definite diagnosis of Relapsing-Remitting Multiple Sclerosis and I needed to begin disease-delay treatment as soon as possible, which meant self-injections 3 times a week…..for the rest of my life.
I was devastated and scared. How could this be happening? Why is this happening? MS does not run in my family, and prior to March, I had no other signs or symptoms. I became depressed; I was giving up. The day before I started my injections my husband said to me, “Why are you giving up already? The woman I know is a fighter and faces everything head on. You never give up on anything. I feel like you are just rolling over and not fighting.” I was so mad at him for saying that. I cried, I got angry, I thought “How could he saw such things to me? Doesn’t he know that I’m sick?” He did know, and he accepted it, he supported me, but he didn’t like the attitude I had regarding the disease. He knew I was a fighter. He was right. It took a few weeks, but one night, as I lay in bed begging for sleep, something came over me. Something had to change.
That night I made a decision: I will not let MS define me, it will EMPOWER me. The next morning, I began the process of establishing the Keep S’Myelin Foundation of Hope. By the end of the day I had 2 t-shirt fundraisers launched and a website developed. This foundation will seek to provide both financial and non-financial support to MS patients and their families. There are programs available for help with medication, but what about the expenses incurred with travel to received treatment, office visit co-pays, assistance items not covered by insurance? In addition, I hope to establish scholarship funds for patients and families to better their education and offer training for work-from-home patients. It’s still in its infancy and I have a long way to go, but I will get there. For the first time in several months I am excited and passionate about something. I have a positive attitude about life and helping others like me. My husband, who is my biggest fan, is happy to see his wife back, and continues his support for me daily. He is truly amazing.
I encourage each and every person facing adversity to discover how they can impact the lives of others. Setting up a foundation can be daunting, but registering with the state and the IRS are the first steps, and there are websites available for creating non-profit organizations free of charge. I joined grassroots.org and have gotten a lot of information there. Every effort makes a difference, big or small. I’m hoping that with continued diligence and passion I can help many others like me.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Grace's Joyful Work - Entrepreneur, founder of non-profit foundation, award-winning wellness expert, coach, author & motivational speaker
I lost the life I knew when I was 18.
I was almost ready to leave home to study history at the University of Reading, England. It was summer, and I was at a summer camp, volunteering when I came down with something that felt like the flu. I was feverish and exhausted and, after the sunny days on an animal sanctuary in Kent, it felt like perhaps I’d overdosed on sunlight.
In that moment, so full of light and youth, something shifted and I entered a new world: one of pain and internal awareness.
Parts of me I’d never known began to hurt. And it was the beginning of an intimate knowledge of my body and my own life.
At just 21, I became dangerously ill. Disabled by multiple diagnoses, I was left unable to walk. To type. Even sit up unaided.
Later, I was diagnosed with a long list of chronic illnesses, autoimmune conditions. Everything from my toe joints to my hypothalamus had struggles. My prognoses were dire.
And yet, I defied all of them. Earned a degree (with honors!). Built a global, multifaceted business. Launched a worldwide non-profit foundation. Am an award-winning wellness expert, coach, author, and motivational speaker.
Oracle, the DC Comics super hero says, “Don’t let the wheelchair fool you. I can still kick your ass.” Eventually, I was able to connect to this sentiment, this empowerment, to understand, fully, that underneath it all, I was still me.
Climbing out of the boxes I’ve been forced into was hard. When I first began my Trailblazing Wellness work at gracequantock.com, one support group magazine refused to publish me – their perspective was one of “all or nothing.” Their articles were a pointed pity party (Oh, poor thing, she’s so sick!) or a miraculous turnaround (Amazing! She’s all better!). Anything in between, they wanted no part of. My work and philosophy of living well in the moment, even through pain, of not postponing life until the mythical days of “when I’m better,” did not sit well within their black and white spectrum.
Because I wanted more. Because there is somewhere between desperately ill and miraculously cured: I’m living there, healing there, working and playing there...
It was winter when the doctors told me the pain, fatigue, cognitive dysfunction and muscle weakness I was experiencing were permanent. They told me, ‘no cure,’ that healing was impossible. They said to go home and try to “get used to” the pain, the exhaustion, the sickness. They left me to my own devices with a wheelchair and an infinite supply of pills. And an even bleaker takeaway, however unintentional: no hope.
I ignored their (terrible!) advice and perspectives.
At the beginning, all I wanted to do was give my body a fair chance. To remove everything that was making me feel worse and add in the things I knew my body needed to mend. I sought to create the best possible environment for healing, to see what might happen.
What happened was more healing than I could possibly imagine, a Healing Blueprint successfully developed, and a personalised, supportive healing team to blaze a wellness trail with me.
Six years later, I have emerged stronger. Brighter. Healthier. Happier. With a whole movement behind me.
Emerging from illness, I experienced my first meal. First steps. First trip outside. First time seeing the stars after years of being bed bound and housebound (I’d forgotten about the simple beauty of stars!). First business: I didn’t plan to be an entrepreneur. It was a necessity that grew out of the life I was living, and the challenges I was managing.
My joyful work emerged from my experiences of illness: I was 21, two weeks a bride and desperately, dangerously sick. Bed-bound and hurting, letters became my link to the outside world. Until you are sick and imprisoned in your own home, in your own body, it is hard to understand exactly how important post/mail is.
I lived for letters that contact with the outside I could only just remember, something to focus on and hope for. I made up Healing Boxes – gifts of information, support and healing goodies for friends and family. I tried to buy healing gift boxes for friends and found none in the UK. So I just continued to make my own and more and more people requested them. After a cancer scare at 22, I decided to stop being scared and start living my dreams and so my entrepreneurial journey began.
Now I'm an award-winning international wellness expert, coach, author, motivational speaker. I'm the founder of Healing Boxes CIC and The Phoenix Fire Academy. A Future Young Leader of Wales Award recipient, Entrepreneur Wales Awards and Great British Entrepreneur Awards finalist and featured in The Hay Festival, Positive News, Gala Darling, TEDx, Huffington Post and The Times of London. I'm recognized as a trail blazer by thousands of people who have seen me speak and participated in my programs. I love what I'm doing and am so grateful to be in my Joyful Work.
The best advice I never had is that anything is possible. All those things you think are impossible may be possible. Practically, a woman with multiple serious illnesses, needing full time care and who has never had a real job before should not be able to run two successful businesses from the back of beyond in the Welsh valleys. But it is so. I am living the full colour reality. Those things you think are impossible, the dream you have of changing the world, I am just waiting to see you in action. You have too little time and too much talent to waste.
The one thing I did right was to reach out and ask for help. Ask questions again and again. Be polite and say 'thank you' but ask and then act on the information you receive. When you find someone amazing, ask them for a 10 minute chat, prep your questions and ask away. Then take everything they have given you, ask for a reading list and who else you should speak to. Follow up on it all then go back and report your process. Consistency and openness are key.
If I was to give a message to other would-be Joyful Workers who are deciding to make a difference it would be to step up and begin. Launch now. It will never be perfect and the world needs the revolution you have inside you. Refine as you grow, but just grab your reasons and your let’s-make-a-miracle-team and go!
I was almost ready to leave home to study history at the University of Reading, England. It was summer, and I was at a summer camp, volunteering when I came down with something that felt like the flu. I was feverish and exhausted and, after the sunny days on an animal sanctuary in Kent, it felt like perhaps I’d overdosed on sunlight.
In that moment, so full of light and youth, something shifted and I entered a new world: one of pain and internal awareness.
Parts of me I’d never known began to hurt. And it was the beginning of an intimate knowledge of my body and my own life.
At just 21, I became dangerously ill. Disabled by multiple diagnoses, I was left unable to walk. To type. Even sit up unaided.
Later, I was diagnosed with a long list of chronic illnesses, autoimmune conditions. Everything from my toe joints to my hypothalamus had struggles. My prognoses were dire.
And yet, I defied all of them. Earned a degree (with honors!). Built a global, multifaceted business. Launched a worldwide non-profit foundation. Am an award-winning wellness expert, coach, author, and motivational speaker.
Oracle, the DC Comics super hero says, “Don’t let the wheelchair fool you. I can still kick your ass.” Eventually, I was able to connect to this sentiment, this empowerment, to understand, fully, that underneath it all, I was still me.
Climbing out of the boxes I’ve been forced into was hard. When I first began my Trailblazing Wellness work at gracequantock.com, one support group magazine refused to publish me – their perspective was one of “all or nothing.” Their articles were a pointed pity party (Oh, poor thing, she’s so sick!) or a miraculous turnaround (Amazing! She’s all better!). Anything in between, they wanted no part of. My work and philosophy of living well in the moment, even through pain, of not postponing life until the mythical days of “when I’m better,” did not sit well within their black and white spectrum.
Because I wanted more. Because there is somewhere between desperately ill and miraculously cured: I’m living there, healing there, working and playing there...
It was winter when the doctors told me the pain, fatigue, cognitive dysfunction and muscle weakness I was experiencing were permanent. They told me, ‘no cure,’ that healing was impossible. They said to go home and try to “get used to” the pain, the exhaustion, the sickness. They left me to my own devices with a wheelchair and an infinite supply of pills. And an even bleaker takeaway, however unintentional: no hope.
I ignored their (terrible!) advice and perspectives.
At the beginning, all I wanted to do was give my body a fair chance. To remove everything that was making me feel worse and add in the things I knew my body needed to mend. I sought to create the best possible environment for healing, to see what might happen.
What happened was more healing than I could possibly imagine, a Healing Blueprint successfully developed, and a personalised, supportive healing team to blaze a wellness trail with me.
Six years later, I have emerged stronger. Brighter. Healthier. Happier. With a whole movement behind me.
Emerging from illness, I experienced my first meal. First steps. First trip outside. First time seeing the stars after years of being bed bound and housebound (I’d forgotten about the simple beauty of stars!). First business: I didn’t plan to be an entrepreneur. It was a necessity that grew out of the life I was living, and the challenges I was managing.
My joyful work emerged from my experiences of illness: I was 21, two weeks a bride and desperately, dangerously sick. Bed-bound and hurting, letters became my link to the outside world. Until you are sick and imprisoned in your own home, in your own body, it is hard to understand exactly how important post/mail is.
I lived for letters that contact with the outside I could only just remember, something to focus on and hope for. I made up Healing Boxes – gifts of information, support and healing goodies for friends and family. I tried to buy healing gift boxes for friends and found none in the UK. So I just continued to make my own and more and more people requested them. After a cancer scare at 22, I decided to stop being scared and start living my dreams and so my entrepreneurial journey began.
Now I'm an award-winning international wellness expert, coach, author, motivational speaker. I'm the founder of Healing Boxes CIC and The Phoenix Fire Academy. A Future Young Leader of Wales Award recipient, Entrepreneur Wales Awards and Great British Entrepreneur Awards finalist and featured in The Hay Festival, Positive News, Gala Darling, TEDx, Huffington Post and The Times of London. I'm recognized as a trail blazer by thousands of people who have seen me speak and participated in my programs. I love what I'm doing and am so grateful to be in my Joyful Work.
The best advice I never had is that anything is possible. All those things you think are impossible may be possible. Practically, a woman with multiple serious illnesses, needing full time care and who has never had a real job before should not be able to run two successful businesses from the back of beyond in the Welsh valleys. But it is so. I am living the full colour reality. Those things you think are impossible, the dream you have of changing the world, I am just waiting to see you in action. You have too little time and too much talent to waste.
The one thing I did right was to reach out and ask for help. Ask questions again and again. Be polite and say 'thank you' but ask and then act on the information you receive. When you find someone amazing, ask them for a 10 minute chat, prep your questions and ask away. Then take everything they have given you, ask for a reading list and who else you should speak to. Follow up on it all then go back and report your process. Consistency and openness are key.
If I was to give a message to other would-be Joyful Workers who are deciding to make a difference it would be to step up and begin. Launch now. It will never be perfect and the world needs the revolution you have inside you. Refine as you grow, but just grab your reasons and your let’s-make-a-miracle-team and go!
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Victoria's Joyful Work - creating a website and charity for CRPS sufferers
I grew up in the UK in the ’80s as an only child and went through early life enjoying school, sports and music. I gained good, strong qualifications during my school career and became the first in my family to go to university where I studied a joint honours degree of Law and Spanish. Afterwards I qualified as a Barrister in 2002. I loved it but also knew it was a tough profession to get in, especially for women. While at University I fell in love with a handsome Army man who, on my 21st birthday in front of friends and family, surprised me by getting down on 1 knee and romantically proposed! We made plans to marry when the time was right. But our lives were about to take a very different turn.
After University I got a job as Head of the Law Department at a College. Passing on my legal knowledge to youngsters gave me a real buzz! I progressed to teaching law and it was there where my life changed course.
In November 2003 I had a simple accident at work, slipping down about 30 concrete stairs. No broken bones, but I suffered major soft tissue damage and possible nerve damage. I began to experience severe burning, stabbing pain in my right leg, colour changes from white to purple to black to bright red, stabbing like thousands of ice picks pushed through bone and skin, massive swelling that stretched my skin, hair loss on my leg and my head, and hypersensitivity. I felt a sense of burning as if my leg was in boiling oil then changing to freezing from ice. The stiffness of my ankle made it very hard to walk properly. I suffered from lack of sleep because the burning pain worsened at night. I was depressed. My wrists, shoulders and back were also injured. My problems remained undiagnosed by the multitude of doctors I saw, being told that ‘it was in my head’ or the ‘pain can’t be that bad.’
I thought my fiancée wouldn’t want me anymore. I kept thinking 'He doesn't want to marry me and be my carer at 25 years old! Why should he stay with a cripple?’ But he reassured me time after time that he not only loved me, but wanted to be with me and look after me. I love him so much.
Seven months later I was diagnosed with Complex Regional Pain Syndrome (CRPS). I had never heard of it before. How long does it last? Is there a treatment, or cure? I went on the internet that night and searched for answers, but there were none. I tried every treatment available at that time; medication including opiates, regional and spinal blocks, physiotherapy, mirror therapy, acupuncture, acupressure, desensitisation, short term epidural, debridement...even Chinese medicine! I just wanted the pain to stop.
After 2½ years of non-stop treatments that didn’t work, I began to get ulcers, cracks and skin breakdown from the constant massive swelling, causing a bout of non-medical maggots. Disgusting! The whole of the right leg wept so much I had to wear babies’ nappies in my toe post sandals, the only shoes I could wear, to catch the liquid mess that leaked from my leg. Eventually the doctors decided that my right leg needed to be amputated above the knee. The amputation took place on 13th September 2006. I was 27.
But 2006 wasn’t all bad: I got married to my handsome fella in Las Vegas. Finally I knew he loved me and it didn’t matter how many legs I had or whether this illness caused me to be depressed or angry. Unfortunately the stump needed revision surgery where they cut another 4 inches of bone off as I had osteomyelitis (infection of the bone). It finally healed 18 months later.
I thought the CRPS would be gone, but no. The hypersensitivity, burning, gnawing pain, vast colour changes were still there, now accompanied by phantom limb pain. I began getting bouts of pneumonia so was in and out of hospital. Because of the steroids to treat the pneumonia, my weight shot up.
In January 2014 I contracted Swine Flu while on holiday in New York. I was also diagnosed with 5 types of pneumonia in both lungs. I didn't respond to treatment and after 48 hours my husband was told I had just 20% or less of survival. I was given ECMO, where my blood was taken out, cleaned and oxygenated then returned, similar to dialysis but using your own blood. I was put into an induced coma for 15 days to help keep me alive. I survived and after being brought out of the coma I had a tracheostomy to get me back to the UK. When I returned I found I couldn't feel my only leg. I was diagnosed with Drop Foot and paralysis. I couldn't believe it! My independence was gone.
Not thinking life would get worse, in March 2014 I was diagnosed with the same CRPS symptoms in my left leg. It was after that appointment my husband and I decided life was precious and short, so we created an awareness and support website for other CRPS sufferer. The site offers a forum as well as regular blogs, newsletters and the latest information and research about the condition. I named it Burning Nights CRPS Support because the burning pain tends to worsen at night when we relax. The website and social media campaigns finally went live August 2014. People from the UK and worldwide now have a place to go to find others who understand what they're going through. It is also a space for loved ones to meet others learning to cope with living with a CRPS sufferer.
Unfortunately as Burning Nights started to move forward, at the end of November, the skin on my left leg started to break down and ulcerate. Within 1 week the front and side of my leg had completely opened up with ulcers and the weeping started AGAIN!
On 10th December 2014 I was taken into hospital as an emergency and the same surgeon who amputated my right leg eight years before told I needed an above knee amputation, otherwise it would kill me through infection or septicaemia. So, two days before my 36th birthday and ten days before Christmas, I had my second above knee amputation. What a great birthday, spending it in ICU! And I worried about the sufferers on Burning Nights and how they were doing.
I've been told I can't have prosthetics so I'm wheelchair bound. Even though I still have CRPS in both stumps and phantom limb pain in both, I feel a little happier. I don't have the weeping, smelling and ulcerating legs that caused me to be so ill.
Don’t let anyone tell you that you can’t achieve something! I love what I do now with raising awareness and you just never know who you will meet or speak to, or who will follow you on social media! My husband taught me life is precious and something to hold on to which is what I’m doing now.
Even though I am now a bilateral above knee amputee and I still don’t know the reason why I have CRPS, I am just thrilled at how sufferers have taken to Burning Nights on the forum, website and social media! We seem to be going from strength to strength and we now accept donations to enable us to meet the necessary legal criteria to become the UK’s only CRPS Registered Charity. I really can’t thank everyone enough for their support that they have shown Burning Nights.
I am currently writing my autobiography at the moment so please watch out for its release!
After University I got a job as Head of the Law Department at a College. Passing on my legal knowledge to youngsters gave me a real buzz! I progressed to teaching law and it was there where my life changed course.
In November 2003 I had a simple accident at work, slipping down about 30 concrete stairs. No broken bones, but I suffered major soft tissue damage and possible nerve damage. I began to experience severe burning, stabbing pain in my right leg, colour changes from white to purple to black to bright red, stabbing like thousands of ice picks pushed through bone and skin, massive swelling that stretched my skin, hair loss on my leg and my head, and hypersensitivity. I felt a sense of burning as if my leg was in boiling oil then changing to freezing from ice. The stiffness of my ankle made it very hard to walk properly. I suffered from lack of sleep because the burning pain worsened at night. I was depressed. My wrists, shoulders and back were also injured. My problems remained undiagnosed by the multitude of doctors I saw, being told that ‘it was in my head’ or the ‘pain can’t be that bad.’
I thought my fiancée wouldn’t want me anymore. I kept thinking 'He doesn't want to marry me and be my carer at 25 years old! Why should he stay with a cripple?’ But he reassured me time after time that he not only loved me, but wanted to be with me and look after me. I love him so much.
Seven months later I was diagnosed with Complex Regional Pain Syndrome (CRPS). I had never heard of it before. How long does it last? Is there a treatment, or cure? I went on the internet that night and searched for answers, but there were none. I tried every treatment available at that time; medication including opiates, regional and spinal blocks, physiotherapy, mirror therapy, acupuncture, acupressure, desensitisation, short term epidural, debridement...even Chinese medicine! I just wanted the pain to stop.
After 2½ years of non-stop treatments that didn’t work, I began to get ulcers, cracks and skin breakdown from the constant massive swelling, causing a bout of non-medical maggots. Disgusting! The whole of the right leg wept so much I had to wear babies’ nappies in my toe post sandals, the only shoes I could wear, to catch the liquid mess that leaked from my leg. Eventually the doctors decided that my right leg needed to be amputated above the knee. The amputation took place on 13th September 2006. I was 27.
But 2006 wasn’t all bad: I got married to my handsome fella in Las Vegas. Finally I knew he loved me and it didn’t matter how many legs I had or whether this illness caused me to be depressed or angry. Unfortunately the stump needed revision surgery where they cut another 4 inches of bone off as I had osteomyelitis (infection of the bone). It finally healed 18 months later.
I thought the CRPS would be gone, but no. The hypersensitivity, burning, gnawing pain, vast colour changes were still there, now accompanied by phantom limb pain. I began getting bouts of pneumonia so was in and out of hospital. Because of the steroids to treat the pneumonia, my weight shot up.
In January 2014 I contracted Swine Flu while on holiday in New York. I was also diagnosed with 5 types of pneumonia in both lungs. I didn't respond to treatment and after 48 hours my husband was told I had just 20% or less of survival. I was given ECMO, where my blood was taken out, cleaned and oxygenated then returned, similar to dialysis but using your own blood. I was put into an induced coma for 15 days to help keep me alive. I survived and after being brought out of the coma I had a tracheostomy to get me back to the UK. When I returned I found I couldn't feel my only leg. I was diagnosed with Drop Foot and paralysis. I couldn't believe it! My independence was gone.
Not thinking life would get worse, in March 2014 I was diagnosed with the same CRPS symptoms in my left leg. It was after that appointment my husband and I decided life was precious and short, so we created an awareness and support website for other CRPS sufferer. The site offers a forum as well as regular blogs, newsletters and the latest information and research about the condition. I named it Burning Nights CRPS Support because the burning pain tends to worsen at night when we relax. The website and social media campaigns finally went live August 2014. People from the UK and worldwide now have a place to go to find others who understand what they're going through. It is also a space for loved ones to meet others learning to cope with living with a CRPS sufferer.
Unfortunately as Burning Nights started to move forward, at the end of November, the skin on my left leg started to break down and ulcerate. Within 1 week the front and side of my leg had completely opened up with ulcers and the weeping started AGAIN!
On 10th December 2014 I was taken into hospital as an emergency and the same surgeon who amputated my right leg eight years before told I needed an above knee amputation, otherwise it would kill me through infection or septicaemia. So, two days before my 36th birthday and ten days before Christmas, I had my second above knee amputation. What a great birthday, spending it in ICU! And I worried about the sufferers on Burning Nights and how they were doing.
I've been told I can't have prosthetics so I'm wheelchair bound. Even though I still have CRPS in both stumps and phantom limb pain in both, I feel a little happier. I don't have the weeping, smelling and ulcerating legs that caused me to be so ill.
Don’t let anyone tell you that you can’t achieve something! I love what I do now with raising awareness and you just never know who you will meet or speak to, or who will follow you on social media! My husband taught me life is precious and something to hold on to which is what I’m doing now.
Even though I am now a bilateral above knee amputee and I still don’t know the reason why I have CRPS, I am just thrilled at how sufferers have taken to Burning Nights on the forum, website and social media! We seem to be going from strength to strength and we now accept donations to enable us to meet the necessary legal criteria to become the UK’s only CRPS Registered Charity. I really can’t thank everyone enough for their support that they have shown Burning Nights.
I am currently writing my autobiography at the moment so please watch out for its release!
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Website: www.chronicpaincrps.com
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If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Chris's Joyful Work - creating a pill holder company
I realized recently that I’ve been sick for more of my life than I’ve been healthy. Twenty years ago I was starting my Freshman year of high school; I was 14 and loved to play soccer and softball and do normal teenage girl stuff. Then one day things started to change, and I had no idea that someday I’d be almost 35 and the words Myasthenia Gravis would be as familiar to me as my own name.
The first time I noticed my buddy Myasthenia, I was at the mall with one of my best friends, and I’m sure we were trying to find cute boys to talk to. Emily and I are still friends to this day, and when we’re together we laugh a lot. So there was laughing and talking and more laughing….so much, in fact, that when we walked by a mirror, I noticed that I couldn’t smile. That’s right, I couldn’t smile. What the heck?!? We figured we were just having too much fun, and that my face must be tired. Which it sort of was, but it’s not exactly normal for your smile to wear out.
Some time went by, a few weeks maybe, and then I was at school and really conscious of how hard it was to move food around in my mouth. I couldn’t remember if that had always been the case and I just never noticed, or if it was different. Then I was playing the piano and my pinky finger wouldn’t move to reach an octave. By this time, I had a feeling something might be going on, but I still hadn’t really talked about it.
A few days later, I saw a commercial on TV that asked “Do you sometimes have trouble moving parts of your body?” And I realized, YES, I DO! According to the ad, I had multiple sclerosis. So that’s what I told my mom. Can you imagine your 14-year old daughter coming to you convinced she has MS? That was the start of my diagnosis, and I was fortunate to have an absolutely amazing neurologist that figured it out fast.
Once we knew what we were dealing with, it didn’t really get easier. I was taking Prednisone (which gave me a triple chin that was particularly fun in high school) and Imuran, along with a medication called Mestinon. I was at the doctor’s office almost every day after school reviewing how my meds were working and doing strength tests. When I was feeling strong, I could actually raise my arms above my shoulders, or lift my head off a pillow, definitely not the standard I was used to. My mouth was affected more than anything else, and it was years before I smiled fully again (but I did)!! A lot of the time I couldn’t swallow and I’d choke on my saliva. Even talking, which is one of my all-time favorite things to do, was too hard, I’d slur my speech.
I spent a lot of time in the hospital that year, with a visit to intensive care for a week or so. I also had a thymectomy, where they took out my thymus gland.
I’ll fast forward: I went through high school and college doing better, but not great. My smile was my barometer, and it was never much more than a grimace. It was so hard - it’s difficult to explain what an important thing that is.
Then, a few years after college, I started to do better. My neurologist had said that people sometimes improve about 10 years after thymectomy, and that was what happened! All of a sudden I couldn’t stop smiling at myself in the mirror!!!
It’s not perfect, but I’m in a chemical remission where it’s mostly under control with medication. I freak out now when I have the slightest symptoms, because I remember how bad it was and I really don’t want to go back. I still struggle with some things, but if you met me, you’d probably have no idea. I feel so lucky every day, I really didn’t believe it was possible to feel as good as I do today. I’m smiling BIG while I write this.
So the funny thing is that Myasthenia has actually led me to a pretty exciting change in my life.
I’ve worked in big corporations for my whole career, and I recently left to do something on my own. That something was to start a small company that sells high quality pill holders to people like me that need to have their medication with them all the time. The company is called Cielo Pill Holders (www.cielopillholders.com) and the pill holders are stylish, discreet, and even crafted in the USA.
I wanted to do something that made a difference in people’s lives, and in a very small way, these pill holders are doing it! The business is built on the idea that even though being sick isn’t necessarily the greatest part of your life, the products you use because of your illness don’t have to make it even worse.
What if the pill holder you use multiple times a day actually brings a smile to your face instead?! That was the idea behind Cielo. Oh, and Cielo means sky, because it’s being outside that brings a smile to my face. Every time.
It was important to me to work with local manufacturers, and I found a great partner that made precision parts – mostly for the aerospace industry. He understood what I was trying to do, and his commitment to quality made him the right guy to work with. The other missing link was someone who could bring the design vision to life. I had done some testing and knew there was a market, but I’m definitely not a product designer. The stars seemed to align, and I met a brilliant designer, Laura Handler. She’s passionate and meticulous, and together we created what I think are stunningly beautiful pill holders.
I’m just starting to grow the business, but I’m seeing some incredible momentum. Cielo was featured on Vogue.com earlier this year and in the April issue of Good Housekeeping. Some of the products will also be available on Target.com! WOW!!
Honestly, the best part of Cielo has been connecting with people who can relate to what it’s like to have an autoimmune condition. Cielo donates a portion of the sales from every pill holder to autoimmune disease research, and I am absolutely beside myself with excitement for this!!
It’s been incredible so far, and I can’t wait to see what the future holds!
The first time I noticed my buddy Myasthenia, I was at the mall with one of my best friends, and I’m sure we were trying to find cute boys to talk to. Emily and I are still friends to this day, and when we’re together we laugh a lot. So there was laughing and talking and more laughing….so much, in fact, that when we walked by a mirror, I noticed that I couldn’t smile. That’s right, I couldn’t smile. What the heck?!? We figured we were just having too much fun, and that my face must be tired. Which it sort of was, but it’s not exactly normal for your smile to wear out.
Some time went by, a few weeks maybe, and then I was at school and really conscious of how hard it was to move food around in my mouth. I couldn’t remember if that had always been the case and I just never noticed, or if it was different. Then I was playing the piano and my pinky finger wouldn’t move to reach an octave. By this time, I had a feeling something might be going on, but I still hadn’t really talked about it.
A few days later, I saw a commercial on TV that asked “Do you sometimes have trouble moving parts of your body?” And I realized, YES, I DO! According to the ad, I had multiple sclerosis. So that’s what I told my mom. Can you imagine your 14-year old daughter coming to you convinced she has MS? That was the start of my diagnosis, and I was fortunate to have an absolutely amazing neurologist that figured it out fast.
Once we knew what we were dealing with, it didn’t really get easier. I was taking Prednisone (which gave me a triple chin that was particularly fun in high school) and Imuran, along with a medication called Mestinon. I was at the doctor’s office almost every day after school reviewing how my meds were working and doing strength tests. When I was feeling strong, I could actually raise my arms above my shoulders, or lift my head off a pillow, definitely not the standard I was used to. My mouth was affected more than anything else, and it was years before I smiled fully again (but I did)!! A lot of the time I couldn’t swallow and I’d choke on my saliva. Even talking, which is one of my all-time favorite things to do, was too hard, I’d slur my speech.
I spent a lot of time in the hospital that year, with a visit to intensive care for a week or so. I also had a thymectomy, where they took out my thymus gland.
I’ll fast forward: I went through high school and college doing better, but not great. My smile was my barometer, and it was never much more than a grimace. It was so hard - it’s difficult to explain what an important thing that is.
Then, a few years after college, I started to do better. My neurologist had said that people sometimes improve about 10 years after thymectomy, and that was what happened! All of a sudden I couldn’t stop smiling at myself in the mirror!!!
It’s not perfect, but I’m in a chemical remission where it’s mostly under control with medication. I freak out now when I have the slightest symptoms, because I remember how bad it was and I really don’t want to go back. I still struggle with some things, but if you met me, you’d probably have no idea. I feel so lucky every day, I really didn’t believe it was possible to feel as good as I do today. I’m smiling BIG while I write this.
So the funny thing is that Myasthenia has actually led me to a pretty exciting change in my life.
I’ve worked in big corporations for my whole career, and I recently left to do something on my own. That something was to start a small company that sells high quality pill holders to people like me that need to have their medication with them all the time. The company is called Cielo Pill Holders (www.cielopillholders.com) and the pill holders are stylish, discreet, and even crafted in the USA.
I wanted to do something that made a difference in people’s lives, and in a very small way, these pill holders are doing it! The business is built on the idea that even though being sick isn’t necessarily the greatest part of your life, the products you use because of your illness don’t have to make it even worse.
What if the pill holder you use multiple times a day actually brings a smile to your face instead?! That was the idea behind Cielo. Oh, and Cielo means sky, because it’s being outside that brings a smile to my face. Every time.
It was important to me to work with local manufacturers, and I found a great partner that made precision parts – mostly for the aerospace industry. He understood what I was trying to do, and his commitment to quality made him the right guy to work with. The other missing link was someone who could bring the design vision to life. I had done some testing and knew there was a market, but I’m definitely not a product designer. The stars seemed to align, and I met a brilliant designer, Laura Handler. She’s passionate and meticulous, and together we created what I think are stunningly beautiful pill holders.
I’m just starting to grow the business, but I’m seeing some incredible momentum. Cielo was featured on Vogue.com earlier this year and in the April issue of Good Housekeeping. Some of the products will also be available on Target.com! WOW!!
Honestly, the best part of Cielo has been connecting with people who can relate to what it’s like to have an autoimmune condition. Cielo donates a portion of the sales from every pill holder to autoimmune disease research, and I am absolutely beside myself with excitement for this!!
It’s been incredible so far, and I can’t wait to see what the future holds!
Website: www.cielopillholders.com
Twitter: @CieloPillHolder
Facebook: facebook.com/cielopillholders
Email: [email protected]
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Michael's Joyful Work - author, poet, health advocate/activist
A hearty welcome to Michael Fernandez, our first male Joyful Worker!
I feel as if my body has been under fire by chronic illness since the very day I was born. At birth I couldn’t digest proteins, which cost my parents a small fortune in special baby formula that allowed me to thrive. I also had a bad allergy to a sulfa medication given to me in infancy which nearly closed my airways and killed me. As my mother describes it, I looked as if I’d been boiled. Only the tip of my nose was white. She was even afraid to bring me to the ER thinking Child Protective Services might be called. From infancy until age 11, I had seven surgeries on my ear to save me from becoming deaf. I couldn't read or write properly until second grade due to hearing issues, and to this day I have terribly sloppy handwriting due essentially to not being capable of completing that portion of my education. The school had no compassion and never placed me in classes to compensate for my delay. So I am self-taught; in fact, after all the surgeries the first book I ever read on my own was Moby Dick at age six or seven.
I was seemingly fine for 3 years until age 14 when I caught the Epstein Barr virus, or Mononucleosis, which kept me bedridden and out of school for 3 months. Regardless I went back to finish with all my grades in the 90’s and completed my Sophomore year of high school without being held back, even though I missed almost all the Fall classes. I was told I’d worked through the disease at my first job. But when I suddenly couldn’t work during the last 2 weeks, everyone thought I was being lazy or just sick of working. The fact is I was far too sick to be working that whole month and I’d already worked for 2 weeks with a severe illness. Right before school started I was diagnosed and my family finally understood that I was not lazy, just very sick.
Unfortunately with the Mono came a chronic illness I’d experienced my whole life but never to this extreme - migraines. I also had cluster headaches that went undiagnosed until 2014, but was experiencing them back in high school. Even with such disabling illnesses I excelled in creativity and working with my hands, especially writing. Little did I know, when I entered college chronic illness would, yet again, rear its ugly head, this time far more seriously, something that would eventually go terminal.
In 2012, just 3 credits short of graduation, I was literally carried out of my dorm and out of college by my strong, 6'7" little brother. I was thoroughly embarassed as I’d spent the last 3 years of my college life dedicated to the sport of body building and was very muscular. I had only just stopped lifting when I began urinating and vomiting blood after every single workout. At first we thought I was taking too many vitamins or perhaps my migraines were the cause. After over 40 different medications, over 5 different neurologists and headache specialists, we finally found a neurologist knowledgeable in many areas. He tried every procedure, as well as DHE infusions (known to the migraine world). One day I walked into his office toting a cane to walk and my headache specialist asked why. With one look at my knees, ankles, hands, wrists, and feet he saw how severe the inflammation was and IMMEDIATELY called a well-known rheumatologist who specializes in vasculitis. This is the kind of man the NIH might even call for a second opinion if they needed one. His office is even on Park Avenue! This rheumatologist confirmed what the other suspected. He diagnosed me with a 1 in 1.5 million diagnosis of Churg-Strauss Syndrome, a very rare and incurable form of vasculitis that we know essentially nothing about.
I immediately went into treatment as I started into Stage 2, the eosinophilic stage, and I’d exhibited every sign of the disease except a positive biopsy which is extremely hard to get. In fact, I’ve recently been urinating pure blood. Tests indicate it’s not a simple UTI. A mass on the left side of my bladder needs to be biopsied so that it can be diagnosed. It may be cancer or Churg Strauss, but whatever it may be it needs to be taken care of. I’ve had two months of Rituxan infusions and a month of oral cytoxan chemotherapy, which failed to stop this unrelenting disease. Now I am in stage 3, awaiting a clinical trial to save my life with interlucan 5 and interlucan 10 drugs, repurposing medications usually used for neuromuscular diseases. I’d gladly serve as a test subject, as one who is willing to sacrifice for this community.
I’ve dealt with the stigma of invisible illness all my life and it’s time, now that I’m a grown man, to do something about this huge problem within the medical community. Today I work for 3 Non-Profit organizations as:
Thank you for reading about me! You can find me and my Migraine Discussions on www.facebook.com/migrainesdiscussions and on Twitter at @mff181. I am currently working on a new book, but you can read about my book of poetry here - http://www.pajamadaze.com/pjs-bookshelf/one-mans-chronic-pain-poetry-from-the-heart-by-michael-fernandez. I hope you'll visit!
I was seemingly fine for 3 years until age 14 when I caught the Epstein Barr virus, or Mononucleosis, which kept me bedridden and out of school for 3 months. Regardless I went back to finish with all my grades in the 90’s and completed my Sophomore year of high school without being held back, even though I missed almost all the Fall classes. I was told I’d worked through the disease at my first job. But when I suddenly couldn’t work during the last 2 weeks, everyone thought I was being lazy or just sick of working. The fact is I was far too sick to be working that whole month and I’d already worked for 2 weeks with a severe illness. Right before school started I was diagnosed and my family finally understood that I was not lazy, just very sick.
Unfortunately with the Mono came a chronic illness I’d experienced my whole life but never to this extreme - migraines. I also had cluster headaches that went undiagnosed until 2014, but was experiencing them back in high school. Even with such disabling illnesses I excelled in creativity and working with my hands, especially writing. Little did I know, when I entered college chronic illness would, yet again, rear its ugly head, this time far more seriously, something that would eventually go terminal.
In 2012, just 3 credits short of graduation, I was literally carried out of my dorm and out of college by my strong, 6'7" little brother. I was thoroughly embarassed as I’d spent the last 3 years of my college life dedicated to the sport of body building and was very muscular. I had only just stopped lifting when I began urinating and vomiting blood after every single workout. At first we thought I was taking too many vitamins or perhaps my migraines were the cause. After over 40 different medications, over 5 different neurologists and headache specialists, we finally found a neurologist knowledgeable in many areas. He tried every procedure, as well as DHE infusions (known to the migraine world). One day I walked into his office toting a cane to walk and my headache specialist asked why. With one look at my knees, ankles, hands, wrists, and feet he saw how severe the inflammation was and IMMEDIATELY called a well-known rheumatologist who specializes in vasculitis. This is the kind of man the NIH might even call for a second opinion if they needed one. His office is even on Park Avenue! This rheumatologist confirmed what the other suspected. He diagnosed me with a 1 in 1.5 million diagnosis of Churg-Strauss Syndrome, a very rare and incurable form of vasculitis that we know essentially nothing about.
I immediately went into treatment as I started into Stage 2, the eosinophilic stage, and I’d exhibited every sign of the disease except a positive biopsy which is extremely hard to get. In fact, I’ve recently been urinating pure blood. Tests indicate it’s not a simple UTI. A mass on the left side of my bladder needs to be biopsied so that it can be diagnosed. It may be cancer or Churg Strauss, but whatever it may be it needs to be taken care of. I’ve had two months of Rituxan infusions and a month of oral cytoxan chemotherapy, which failed to stop this unrelenting disease. Now I am in stage 3, awaiting a clinical trial to save my life with interlucan 5 and interlucan 10 drugs, repurposing medications usually used for neuromuscular diseases. I’d gladly serve as a test subject, as one who is willing to sacrifice for this community.
I’ve dealt with the stigma of invisible illness all my life and it’s time, now that I’m a grown man, to do something about this huge problem within the medical community. Today I work for 3 Non-Profit organizations as:
- a US Pain Ambassador,
- a Migraine Research Foundation Ambassador (the 1st one),
- and a Patient-Partner on the Vasculitis Patient Advisory Council for the V-PPRN led partially by the Vasculitis Foundation,
- not to mention being paid a small amount to write an article each week for Axon Optics,
- and also having started my own LLC this year, to be released in September, with a website and application (that in itself is very anxiety causing and reason for excitement!). I’ll finally be advertising through the web and print with SEO. We will be offering patients services they’d never seen before in order to manage their illness better or for their family members to become better caregivers. The best part is we can certify you through our LLC. By taking the class and learning with us, you will qualify to submit your resume to the company. We will ONLY be hiring people with a chronic illness when at all possible, and if they can manage the job, are loyal and outgoing. You see, I want to succeed but at the same time I need to help the patients who want jobs and can work from home, and don’t want to go on SSI or SSDI. I just did my first public talk in mid-July at Bayer’s US HQ and got tons of great feedback. I only hope some of my contacts will reply eventually to the plethora of email I sent out. The more sponsors my website gets the less our services will cost for patients. I want to charge as little as possible, knowing many of my fellow patients are on government assistance programs.
- Right now what is to become an entire business is simply a blog. I write 2 articles daily, and on occasion, my fiance writes from the caregiver viewpoint.
Thank you for reading about me! You can find me and my Migraine Discussions on www.facebook.com/migrainesdiscussions and on Twitter at @mff181. I am currently working on a new book, but you can read about my book of poetry here - http://www.pajamadaze.com/pjs-bookshelf/one-mans-chronic-pain-poetry-from-the-heart-by-michael-fernandez. I hope you'll visit!
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
please leave us a brief description with contact information on our Contact Us page.
Thank you!
Nathalie's Joyful Work - Painting
I got married in May 2009 in Rome, Italy. It was the best of sunny days that still brings a smile to friends and family who attended. My husband and I had made plans to start a family, buy our first house etc and things got off to a quick start when we returned home from honeymoon.
We found a house in the area we wanted to live, not too far from our friends and moved in at the end of September 2009.
In October 2009, only 3 weeks after moving house, I was putting out my recycling rubbish crates for collection and lost my footing on a single step by my front door. My ankle was broken and I lay on the ground awaiting an ambulance in the freezing cold weather for an hour whilst in agony. Around 3am the next day, I had been discharged from the emergency department with a pair of crutches (which I’d never used before in my life). I had to climb 15 steps outside our house by hauling myself up on my bottom with my plastered leg in the air.
I had follow up appointments at the fracture clinic during the Christmas/New Year period and the x-rays showed that my ankle bone had healed. The pain, swelling & colour changes, however, had not disappeared over the 2 months. I continued to visit the hospital regularly and in January 2010, I started weekly physio sessions. 8 months later, I still couldn’t weightbear on my left foot/ankle, let alone walk without crutches. I developed other symptoms, too, including memory loss, disorientation, over-sensitivity of the skin, chronic insomnia, depression, pins & needles, spasms and constant pain which was either freezing cold or searing hot through to my bones. It wouldn’t go away in spite of using prescribed opiate medication.
In September 2010, the orthopaedic consultant I had been seeing in Outpatients quietly said he thought I had a chronic pain condition called Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy (USA). I was sent to receive a nerve block 2 months later which is often useful for pain relief, but I didn’t have more than 2 hours of relief so the nerve blocks were not repeated.
I was still attending the physio sessions at the hospital and receiving other treatments such as acupuncture, ultrasound, gym work, hot/cold treatment, but nothing was working.
In 2012, I took part in a 3 week in-patient pain management course in a neuro-rehabilitation hospital. It was a relief to spend time with others who had gone through similar situations as me and knew what it was like to have unrelenting agonising pain. More physio exercises, some psychology sessions and relaxation/mindfulness lessons.
Today, I am under the care of a well-respected neuro-rehabilitation hospital in Liverpool, England. I have had more physio sessions, mirror therapy and desensitisation sessions. I am working my way through various medication plans to try to keep my CRPS at bay; CRPS currently doesn’t have a cure.
I am unable to work in the traditional sense. In my ‘old’ life, I used to work as a directors’ personal assistant in Central London, the right hand person a senior director would rely upon. These days I have the mind/memory of an 80 year old, not a 40 year old! My smartphone is my saviour, especially for the sticky notes and alarm calls.
Art has always been my passion and I’m fortunate in that my husband also enjoys spending a few hours in art galleries and museums with me in our spare time. Friends and family have often asked me if I had considered selling my paintings. The insomnia meant that I had lots of time to research the idea during the long nights. I had a couple of clients who wanted a commission including the dressmaker who made my wedding dress. It was time to bite the bullet and give things a go, and so Nathalie Sheridan Arts was born late in 2013 with business cards, emails to friends and contacts, as well as social media accounts. The website launched properly in January 2014.
I wouldn’t have been able to launch Nathalie Sheridan Arts without the support of my hardworking husband. We converted the spare bedroom into my art studio/library/office. It was fabulous to have somewhere where I could leave my work and materials overnight without having to pack away at the end of each day! Completing a commissioned painting was a true learning curve as I had to juggle my work around flare-ups and severe fatigue.
I’m thankful to have art in my life as a distraction from the pain and to give me a sense of achievement when a painting is completed.
We found a house in the area we wanted to live, not too far from our friends and moved in at the end of September 2009.
In October 2009, only 3 weeks after moving house, I was putting out my recycling rubbish crates for collection and lost my footing on a single step by my front door. My ankle was broken and I lay on the ground awaiting an ambulance in the freezing cold weather for an hour whilst in agony. Around 3am the next day, I had been discharged from the emergency department with a pair of crutches (which I’d never used before in my life). I had to climb 15 steps outside our house by hauling myself up on my bottom with my plastered leg in the air.
I had follow up appointments at the fracture clinic during the Christmas/New Year period and the x-rays showed that my ankle bone had healed. The pain, swelling & colour changes, however, had not disappeared over the 2 months. I continued to visit the hospital regularly and in January 2010, I started weekly physio sessions. 8 months later, I still couldn’t weightbear on my left foot/ankle, let alone walk without crutches. I developed other symptoms, too, including memory loss, disorientation, over-sensitivity of the skin, chronic insomnia, depression, pins & needles, spasms and constant pain which was either freezing cold or searing hot through to my bones. It wouldn’t go away in spite of using prescribed opiate medication.
In September 2010, the orthopaedic consultant I had been seeing in Outpatients quietly said he thought I had a chronic pain condition called Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy (USA). I was sent to receive a nerve block 2 months later which is often useful for pain relief, but I didn’t have more than 2 hours of relief so the nerve blocks were not repeated.
I was still attending the physio sessions at the hospital and receiving other treatments such as acupuncture, ultrasound, gym work, hot/cold treatment, but nothing was working.
In 2012, I took part in a 3 week in-patient pain management course in a neuro-rehabilitation hospital. It was a relief to spend time with others who had gone through similar situations as me and knew what it was like to have unrelenting agonising pain. More physio exercises, some psychology sessions and relaxation/mindfulness lessons.
Today, I am under the care of a well-respected neuro-rehabilitation hospital in Liverpool, England. I have had more physio sessions, mirror therapy and desensitisation sessions. I am working my way through various medication plans to try to keep my CRPS at bay; CRPS currently doesn’t have a cure.
I am unable to work in the traditional sense. In my ‘old’ life, I used to work as a directors’ personal assistant in Central London, the right hand person a senior director would rely upon. These days I have the mind/memory of an 80 year old, not a 40 year old! My smartphone is my saviour, especially for the sticky notes and alarm calls.
Art has always been my passion and I’m fortunate in that my husband also enjoys spending a few hours in art galleries and museums with me in our spare time. Friends and family have often asked me if I had considered selling my paintings. The insomnia meant that I had lots of time to research the idea during the long nights. I had a couple of clients who wanted a commission including the dressmaker who made my wedding dress. It was time to bite the bullet and give things a go, and so Nathalie Sheridan Arts was born late in 2013 with business cards, emails to friends and contacts, as well as social media accounts. The website launched properly in January 2014.
I wouldn’t have been able to launch Nathalie Sheridan Arts without the support of my hardworking husband. We converted the spare bedroom into my art studio/library/office. It was fabulous to have somewhere where I could leave my work and materials overnight without having to pack away at the end of each day! Completing a commissioned painting was a true learning curve as I had to juggle my work around flare-ups and severe fatigue.
I’m thankful to have art in my life as a distraction from the pain and to give me a sense of achievement when a painting is completed.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
LOUISE'S JOYFUL WORK - BOOK AND BLOG AUTHOR, COACH, PASSIVE INCOME
My 21-year journey with CFS/ME and later, electro-sensitivity, has involved many ups and downs, both physically and psychologically; times of despair and times of triumph. I wouldn't be the person I am today without having gone through it. In that way, I wouldn't change a thing. However, at times I acknowledge that it's very unfair and has destroyed parts of my life.
From the start of my CFS/ME journey I've been driven to pursue my passions any way I can. I believe that a lost sense of purpose and identity impact people with chronic illness and contribute to our grief. Part of my mission is to inspire others to follow their passions and regain or discover their purpose in life.
I was diagnosed with CFS/ME in 1992. I didn't believe it at the time because I was far from bed-bound. At times during those early years I did seem to recover, and was able to travel with my future husband, and start work as a journalist. The full-time work lasted only four months before I became so ill I had to quit and move back in with my parents. I was 22.
I spent 2 1/2 years recovering at home before moving to Ballarat and starting a part-time Bachelor of Psychology degree, which I finished in 3 years, then Honors full-time in 2000. The low contact hours helped, but researching and writing a thesis (on the impact of CFS on elite athletes' sense of identity) knocked my health around.
I wanted to be a psychologist, but I still wasn't well enough to work 20 hours a week, so I applied for and won a scholarship to do my Ph.D in psychology. I was researching Quality of Life in People with CFS/ME, and I could do it in my own time.
In 2002 I traveled with my then-husband to Disneyland, Calgary and the Caribbean (the healthiest I've felt for years). When we got back I became pregnant with my daughter – our first child. We hoped I would be one of those people with CFS/ME who improved in pregnancy. Wrong! I started getting severe migraine-like headaches, ear and face pain when I used my old laptop. Previously this had been an issue with newer laptops and PCs, as well as mobile phones, but as the weeks rolled on, everything electro-magnetic caused me pain - even the car!! I thought I was going crazy, but I knew my symptoms were real! I was living a nightmare. I blogged about it here: Trapped in my body; Allergic to Electricity; The Dilemma of Pain
My CFS/ME symptoms continued, but due to indigestion and 'morning' sickness I couldn't lay down or lean back in a chair. Those 9 months, and the 18 months that followed, were my darkest period. Luckily, with my Lifeline counseling and suicide intervention training, the tiny part of me that wasn't deeply depressed realized I needed to get help. I started seeing a counselor and taking anti-depressants. The counseling helped but the anti-depressants were short-lived.
Unfortunately it all took its toll on my beautiful husband, whom I considered my soul mate, best friend and tower of strength through 12 years of illness. With many tears, we separated. I re-married too quickly, and separated from my second husband amicably two years ago.
At my sickest, I felt most of my avenues to pursue my passions were gone. I've since realized that was just a context based in grief and that I can still follow my passions.
Landmark Education gave me tools to recreate my life, empowering me to do things I once saw as impossible. I now use computers and watch TV, acknowledging that when I choose to follow my passions via these means I will get a severe headache. I've learned to deal with pain, using sleep (and sleep aids), regular massage, yoga and hot baths.
So what is my Joyful Work? This long post may give you an idea – blogging! I have an equal passion for connecting with people and making a difference in their lives. I've started coaching people with CFS. Through my blog/website – www.GetUpAndGoGuru.com – that I started in January 2013, I write about my experience with CFS/ME/electrosensitivity (and pyroluria – a more recent diagnosis that could underlie all my problems), relating that to how others can live powerfully with their own chronic illness, specifically CFS/ME.
I became fascinated with the opportunity of online business when I listened to a podcast called Smart Passive Income by Pat Flynn. Since then I have come to believe in the potential of building passive income using blogs and other online methods. As financial constraints are a major issue for people with chronic illness, I hope to be an example for using one's passion to gain a sense of purpose AND financial freedom.
In the spirit of this venture, I finished an eBook last October that I'd started writing 4 years prior, about spending quality, small windows of time with your children, titled 15 Minute Power Plays With Your Kids: How To Be A Better Parent In 15 Minutes A Day. As a mother with CFS/ME/electro-sensitivity, I've only had small windows of time and energy to dedicate to quality time with my daughter. I realized, however, that she often only needs small amounts of quality time to feel satisfied. We have an awesome relationship, despite the restrictions of my illness.
I've added to the book a huge Resource Guide to back up the 31 simple ways to spend quality time with kids, and created a website based on the book. On 24 December 2013 my eBook and website went 'live'.
For The Get Up And Go Guru, I envision: recording all my blogs as mp3s (available at this link), to be uploaded on iTunes as audio blog/podcasts; starting another podcast featuring interviews with chronically ill people living their passion via online blogging/business; writing lots of blogs; AND writing a couple of eBooks about living with CFS/ME.
How can you start blogging yourself? I suggest signing up for a Wordpress.com or other free site to see if blogging is for you. Then start writing blogs about your passions. Seek out blogging podcasts, starting with Pat Flynn's Smart Passive Income (search for blogging in the podcast section). Also BecomeABlogger.com is a great podcast and site, as is Internet Business Mastery. Eventually you can buy a website on which to base your blog. I went with Bluehost, which includes the domain name.
To get started writing eBooks, I recommend signing up for Pat Flynn's newsletter, which gives you a free eBook eBooks The SMART Way. Also, I just discovered a great site at AmyLynnAndrews.com where she has step-by-step blogs about writing and selling an eBook.
It's the ultimate irony that I pursue my passion/purpose via the internet when it causes me so much pain to use a computer. But on my journey I have decided that living my life fully, rather than fearing life and living like a hermit, is how I want to LIVE. Life as a hermit isn't a life. It is just existing.
From the start of my CFS/ME journey I've been driven to pursue my passions any way I can. I believe that a lost sense of purpose and identity impact people with chronic illness and contribute to our grief. Part of my mission is to inspire others to follow their passions and regain or discover their purpose in life.
I was diagnosed with CFS/ME in 1992. I didn't believe it at the time because I was far from bed-bound. At times during those early years I did seem to recover, and was able to travel with my future husband, and start work as a journalist. The full-time work lasted only four months before I became so ill I had to quit and move back in with my parents. I was 22.
I spent 2 1/2 years recovering at home before moving to Ballarat and starting a part-time Bachelor of Psychology degree, which I finished in 3 years, then Honors full-time in 2000. The low contact hours helped, but researching and writing a thesis (on the impact of CFS on elite athletes' sense of identity) knocked my health around.
I wanted to be a psychologist, but I still wasn't well enough to work 20 hours a week, so I applied for and won a scholarship to do my Ph.D in psychology. I was researching Quality of Life in People with CFS/ME, and I could do it in my own time.
In 2002 I traveled with my then-husband to Disneyland, Calgary and the Caribbean (the healthiest I've felt for years). When we got back I became pregnant with my daughter – our first child. We hoped I would be one of those people with CFS/ME who improved in pregnancy. Wrong! I started getting severe migraine-like headaches, ear and face pain when I used my old laptop. Previously this had been an issue with newer laptops and PCs, as well as mobile phones, but as the weeks rolled on, everything electro-magnetic caused me pain - even the car!! I thought I was going crazy, but I knew my symptoms were real! I was living a nightmare. I blogged about it here: Trapped in my body; Allergic to Electricity; The Dilemma of Pain
My CFS/ME symptoms continued, but due to indigestion and 'morning' sickness I couldn't lay down or lean back in a chair. Those 9 months, and the 18 months that followed, were my darkest period. Luckily, with my Lifeline counseling and suicide intervention training, the tiny part of me that wasn't deeply depressed realized I needed to get help. I started seeing a counselor and taking anti-depressants. The counseling helped but the anti-depressants were short-lived.
Unfortunately it all took its toll on my beautiful husband, whom I considered my soul mate, best friend and tower of strength through 12 years of illness. With many tears, we separated. I re-married too quickly, and separated from my second husband amicably two years ago.
At my sickest, I felt most of my avenues to pursue my passions were gone. I've since realized that was just a context based in grief and that I can still follow my passions.
Landmark Education gave me tools to recreate my life, empowering me to do things I once saw as impossible. I now use computers and watch TV, acknowledging that when I choose to follow my passions via these means I will get a severe headache. I've learned to deal with pain, using sleep (and sleep aids), regular massage, yoga and hot baths.
So what is my Joyful Work? This long post may give you an idea – blogging! I have an equal passion for connecting with people and making a difference in their lives. I've started coaching people with CFS. Through my blog/website – www.GetUpAndGoGuru.com – that I started in January 2013, I write about my experience with CFS/ME/electrosensitivity (and pyroluria – a more recent diagnosis that could underlie all my problems), relating that to how others can live powerfully with their own chronic illness, specifically CFS/ME.
I became fascinated with the opportunity of online business when I listened to a podcast called Smart Passive Income by Pat Flynn. Since then I have come to believe in the potential of building passive income using blogs and other online methods. As financial constraints are a major issue for people with chronic illness, I hope to be an example for using one's passion to gain a sense of purpose AND financial freedom.
In the spirit of this venture, I finished an eBook last October that I'd started writing 4 years prior, about spending quality, small windows of time with your children, titled 15 Minute Power Plays With Your Kids: How To Be A Better Parent In 15 Minutes A Day. As a mother with CFS/ME/electro-sensitivity, I've only had small windows of time and energy to dedicate to quality time with my daughter. I realized, however, that she often only needs small amounts of quality time to feel satisfied. We have an awesome relationship, despite the restrictions of my illness.
I've added to the book a huge Resource Guide to back up the 31 simple ways to spend quality time with kids, and created a website based on the book. On 24 December 2013 my eBook and website went 'live'.
For The Get Up And Go Guru, I envision: recording all my blogs as mp3s (available at this link), to be uploaded on iTunes as audio blog/podcasts; starting another podcast featuring interviews with chronically ill people living their passion via online blogging/business; writing lots of blogs; AND writing a couple of eBooks about living with CFS/ME.
How can you start blogging yourself? I suggest signing up for a Wordpress.com or other free site to see if blogging is for you. Then start writing blogs about your passions. Seek out blogging podcasts, starting with Pat Flynn's Smart Passive Income (search for blogging in the podcast section). Also BecomeABlogger.com is a great podcast and site, as is Internet Business Mastery. Eventually you can buy a website on which to base your blog. I went with Bluehost, which includes the domain name.
To get started writing eBooks, I recommend signing up for Pat Flynn's newsletter, which gives you a free eBook eBooks The SMART Way. Also, I just discovered a great site at AmyLynnAndrews.com where she has step-by-step blogs about writing and selling an eBook.
It's the ultimate irony that I pursue my passion/purpose via the internet when it causes me so much pain to use a computer. But on my journey I have decided that living my life fully, rather than fearing life and living like a hermit, is how I want to LIVE. Life as a hermit isn't a life. It is just existing.
Blog site: www.getupandgoguru.com/
Twitter: https://twitter.com/GetUpNGoGuru
Facebook: www.facebook.com/getupandgoguru
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
please leave us a brief description with contact information on our Contact Us page.
Thank you!
MIRANDA'S JOYFUL WORK - CRAFTS, NAIL ART, YouTube AND WEBSITES
Miranda Brewster - crafting out of chronic illness.
My journey began in 2001. Up until then my life had been average. I had worked as a nanny, ran an afterschool playclub and assisted in a special needs school. I had been dogged by bouts of poor health but would bounce back well enough. Then I developed pnemonia and things changed. A year later I developed it again, ending up in hospital that time, and after a jaw infection, a minor head injury and piles of stress, my health collapsed totally and I was diagnosed with ME.
I had heard of ME, and knew people with it. It was that tiredness thing, right? If only. I was unprepared for the unbelievable feeling of being put at the point of death and being held there. I had to move back in with my parents at the age of 28 and spent most of my day in bed, watching tv and sleeping.
Gradually a year of being housebound passed and I improved enough to learn how to use a computer and join an ME group. Life then took a unexpected turn, as in this group I met Nigel. We both suffered from ME but somehow we managed to be well enough to regularly fly up and down the country to see each other and finally have a small, discreet and happy wedding in 2005. We were in honeymoon mode for years.
Life had been terribly stressful due to the slow demise of Nigel's mum with early onset Alzheimer's disease, plus numerous other things going on, and I made the mistake of ignoring my illness. ME will NOT be ignored. The little health that I had totally fled and I was left in a state of paralysing weakness, severe pain and total confusion about what was going on. It came to where I could no longer go downstairs, had to have daily carers, and for some time was unable to speak, move, and had to be spoon fed and washed.
The crawl back to health is a slow one with ME but I'm now on my way. All my life I've been a crafty person, drawing, painting, beading. I've also sold a few bits and pieces at craft fayres and parties. Finding myself unable to create was stifling and frustrating. When I had moderate ME I was able to carry on with my craft; even when I first became bedridden I took up knitting, crochet and cross stitch, desperate to make things. But eventually, as the disease took a real hold, I was unable to do anything but lie there, eye mask against the light, headphones to shut out noise, waiting for the time to pass.
I am still bedridden and have yet to go downstairs, but by nurturing myself and listening to my body's needs, channeling my emotions and energies into constructive healing and recovery, loosely scheduling my day into rest, relaxation and gentle activity, I am now able to cross stitch a bit, maybe draw a little. I have also discovered nail art - YAY! I also want to learn to sew and become a real Stepford Wife in seamstress skills. Hopefully, I will be able to bead soon and pick up my knitting needles again. So many plans!
I also make short YouTube videos on my ME experience and share tips on how to cope with chronic illness. In fact, the internet has been a lifeline to me, keeping me in touch with the outside world and introducing me to many people bravely fighting illness. Seeing how others cope is a great way to get inspired; there's a wealth of information out there from so many who are willing to give.
Despite the horror that I have been through, the despair and the trauma, I have discovered that although life will never be the same again, life can still go on. Those with chronic illness have so much to offer, so much experience to give. We are brave, strong warriors and we shall continue to fight, contribute and hold up the world.
My journey began in 2001. Up until then my life had been average. I had worked as a nanny, ran an afterschool playclub and assisted in a special needs school. I had been dogged by bouts of poor health but would bounce back well enough. Then I developed pnemonia and things changed. A year later I developed it again, ending up in hospital that time, and after a jaw infection, a minor head injury and piles of stress, my health collapsed totally and I was diagnosed with ME.
I had heard of ME, and knew people with it. It was that tiredness thing, right? If only. I was unprepared for the unbelievable feeling of being put at the point of death and being held there. I had to move back in with my parents at the age of 28 and spent most of my day in bed, watching tv and sleeping.
Gradually a year of being housebound passed and I improved enough to learn how to use a computer and join an ME group. Life then took a unexpected turn, as in this group I met Nigel. We both suffered from ME but somehow we managed to be well enough to regularly fly up and down the country to see each other and finally have a small, discreet and happy wedding in 2005. We were in honeymoon mode for years.
Life had been terribly stressful due to the slow demise of Nigel's mum with early onset Alzheimer's disease, plus numerous other things going on, and I made the mistake of ignoring my illness. ME will NOT be ignored. The little health that I had totally fled and I was left in a state of paralysing weakness, severe pain and total confusion about what was going on. It came to where I could no longer go downstairs, had to have daily carers, and for some time was unable to speak, move, and had to be spoon fed and washed.
The crawl back to health is a slow one with ME but I'm now on my way. All my life I've been a crafty person, drawing, painting, beading. I've also sold a few bits and pieces at craft fayres and parties. Finding myself unable to create was stifling and frustrating. When I had moderate ME I was able to carry on with my craft; even when I first became bedridden I took up knitting, crochet and cross stitch, desperate to make things. But eventually, as the disease took a real hold, I was unable to do anything but lie there, eye mask against the light, headphones to shut out noise, waiting for the time to pass.
I am still bedridden and have yet to go downstairs, but by nurturing myself and listening to my body's needs, channeling my emotions and energies into constructive healing and recovery, loosely scheduling my day into rest, relaxation and gentle activity, I am now able to cross stitch a bit, maybe draw a little. I have also discovered nail art - YAY! I also want to learn to sew and become a real Stepford Wife in seamstress skills. Hopefully, I will be able to bead soon and pick up my knitting needles again. So many plans!
I also make short YouTube videos on my ME experience and share tips on how to cope with chronic illness. In fact, the internet has been a lifeline to me, keeping me in touch with the outside world and introducing me to many people bravely fighting illness. Seeing how others cope is a great way to get inspired; there's a wealth of information out there from so many who are willing to give.
Despite the horror that I have been through, the despair and the trauma, I have discovered that although life will never be the same again, life can still go on. Those with chronic illness have so much to offer, so much experience to give. We are brave, strong warriors and we shall continue to fight, contribute and hold up the world.
Miranda's websites
Bead jewelery website - http://mirandasbeads.co.uk
Website - http://dozydayz.co.uk
YouTube channel - http://www.youtube.com/user/the14thmoonofuranus/videos
Bead jewelery website - http://mirandasbeads.co.uk
Website - http://dozydayz.co.uk
YouTube channel - http://www.youtube.com/user/the14thmoonofuranus/videos
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
please leave us a brief description with contact information on our Contact Us page.
Thank you!
WAYA'S JOYFUL WORK - HAIR ADORNMENTS
Hi, I'm Gena "Waya" Wagstaff.
I had my fair share of bumps and bruises growing up. I recovered for the most part from the back injuries but my knee was shot. In 2004, I was diagnosed with sciatica and put on pain medication. That same year, I was diagnosed with RR-PTSD and put on meds for that. The following year, while stationed in Hawaii, I managed to break my foot driving my new manual car while wearing flip flops. I continued to work with a brace on my foot. Then I ended up with Shingles. SHINGLES! As a child, I'd had the measles and mumps, even 7 bouts with pneumonia, but never chicken pox! But, the doc said I had them at some point, or I wouldn't have shingles. Talk about excruciating pain! The pain went around my waist and up my lower back, triggering my old sciatica pain in a big way. I couldn't work while I had shingles; just putting pants on was an event! After my shingles cleared up, the pain never fully went away, especially the sciatica.
Shortly after my recovery, we were transferred to Savannah, GA. Things were hunky dory there and I managed my pain well. Then, during a beach gathering with friends, I stepped into a deep hole, up to mid calf, and re-injured my bad knee. After months of physical therapy, steroid injections and taking vicodin, the pain persisted. I was still able to walk, dance and be OCD about cleaning my house, but when the vicodin started losing it's strength, I started feeling pains I didn't know I had. My doc focused on the most painful areas: my neck, shoulder, lower back and right knee. MRIs and x-rays showed bulging discs in my neck and back and spurs behind the patella of my right knee, and chronic inflammatory bursitis. It was determined my shoulder pain was a pinched nerve. I was told to continue the vicodin, dosing more often, and to keep active. No matter how much I complained to my doc, nothing was ever done to really help the pain.
After a couple years, my husband was honorably discharged and we moved up north. By then I was using a cane to get around. Once I was able to find a local doc, I got more of the same. "Take vicodin." X-rays showed torn cartilage in both my knees now, and an MRI found osteoarthritis up and down my spine, four bulging discs and signs of Degenerative Disc Disease. I was sent to a pain clinic that gave me an epidural steroid injection in my lower back to alleviate the nerve pain down my leg. It was a horrible, painful experience, even though he'd injected several vials of lidocaine into the site. It was all for naught. By the time I had my follow up, a few weeks later, I was experiencing nerve pain on the other side, hip pain on both sides and nothing changed for my existing nerve pain. I refused a second injection and refused to return to the pain center. I just lived with the pain and it continued to get worse and spread. I started having GI problems and was diagnosed with IBS-D.
By the time a new doctor came to replace my other GP, I was in so much pain I could barely get out of bed. I stopped homeschooling my two kids and sent them to a good public school. I had even opted out of renewing my ghostwriting contracts that ended in 2010, as meeting those writing deadlines only increased my stress and pain. My new GP spent about an hour with me, learning about my history and what her predecessor did and didn't do. By the end of my appointment I was given a DX of Fibromyalgia and Major Depressive Disorder and a new RX for Cymbalta with Neurontin for the chronic nerve pain and Tramadol for the Osteoarthritis/Bursitis. She said to me "I promise, we'll get you your life back!"
Empowered with answers, and a promising new doctor, I went and researched as much as I could about my new condition. I found the Spoon Theory and discovered I wasn't alone! However, all I ever did was try to convince people that Fibromyalgia was real, tell people how I couldn't do what I used to because I'd run out of "spoons" too quickly, and commiserated with a dozen or so people all day. I still had no direction and didn't know what to do with my life or how to adjust. I was in a constant state of misery, not only for myself but for all the people who also suffered from chronic pain. Then I heard about the Chronically Awesome Foundation and their mission to help sufferers of ALL chronic illnesses, physical and mental, through support, resources and art therapy. What a great find! After all, Fibromyalgia was only part of my complete diagnosis. After following them on Twitter for a while, Jules and I connected. Through what I learned from the Chronically Awesome Foundation, I stopped focusing on what I couldn't do, I stopped trying to convince everyone that Fibromyalgia was real, I stopped worrying about not getting any moral support from my in-laws and I focused on what I COULD do, and loving the people who supported me openly.
Due to my newly found confidence, I decided to start my own business making hair adornments from feathers and beads, a choice I made that was heavily inspired by the Tayledras hair fashions in the Valdemar books by Mercedes Lackey. I can work at my own pace. I can keep being creative. I can return help to those who helped me and I feel productive again!
Now I have direction, I have something to do, something to focus on and a reason to get up every morning. I'm less depressed and I've surrounded myself with positive people, not only from The Chronically Awesome Foundation but from groups like Pajama Daze, Chronic Pain Babes, The American Pain Association, Fight Like a Girl and the US Pain Foundation. As my doctor and I continued discussing, researching and trying different meds to bring my pain down to manageable levels, we ended up with a regimen of water therapy, Cymbalta, Lyrica, Tramadol and a Butrans patch. I feel we've been about 90% successful and I'll take it! I still have to use a cane for short walks and my Jazzy power chair or wheelchair if we're going to a mall or convention. The point is: I'm feeling a lot more confident in myself and my quality of life has improved.
I advocate and support those who also suffer from chronic illness in a positive way and try to help others shift their focus from what they lost to what they still have. I'm also looking for inspiration from the people I chat with online. When I make a hair adornment piece inspired by a certain person, I let them know and make sure I mention their inspiration in the description on my website. I'm still learning my craft but I'm completely open to answer any questions relating to crafting, advocacy, support and the groups I'm part of. I'd love to share what I've learned!
I had my fair share of bumps and bruises growing up. I recovered for the most part from the back injuries but my knee was shot. In 2004, I was diagnosed with sciatica and put on pain medication. That same year, I was diagnosed with RR-PTSD and put on meds for that. The following year, while stationed in Hawaii, I managed to break my foot driving my new manual car while wearing flip flops. I continued to work with a brace on my foot. Then I ended up with Shingles. SHINGLES! As a child, I'd had the measles and mumps, even 7 bouts with pneumonia, but never chicken pox! But, the doc said I had them at some point, or I wouldn't have shingles. Talk about excruciating pain! The pain went around my waist and up my lower back, triggering my old sciatica pain in a big way. I couldn't work while I had shingles; just putting pants on was an event! After my shingles cleared up, the pain never fully went away, especially the sciatica.
Shortly after my recovery, we were transferred to Savannah, GA. Things were hunky dory there and I managed my pain well. Then, during a beach gathering with friends, I stepped into a deep hole, up to mid calf, and re-injured my bad knee. After months of physical therapy, steroid injections and taking vicodin, the pain persisted. I was still able to walk, dance and be OCD about cleaning my house, but when the vicodin started losing it's strength, I started feeling pains I didn't know I had. My doc focused on the most painful areas: my neck, shoulder, lower back and right knee. MRIs and x-rays showed bulging discs in my neck and back and spurs behind the patella of my right knee, and chronic inflammatory bursitis. It was determined my shoulder pain was a pinched nerve. I was told to continue the vicodin, dosing more often, and to keep active. No matter how much I complained to my doc, nothing was ever done to really help the pain.
After a couple years, my husband was honorably discharged and we moved up north. By then I was using a cane to get around. Once I was able to find a local doc, I got more of the same. "Take vicodin." X-rays showed torn cartilage in both my knees now, and an MRI found osteoarthritis up and down my spine, four bulging discs and signs of Degenerative Disc Disease. I was sent to a pain clinic that gave me an epidural steroid injection in my lower back to alleviate the nerve pain down my leg. It was a horrible, painful experience, even though he'd injected several vials of lidocaine into the site. It was all for naught. By the time I had my follow up, a few weeks later, I was experiencing nerve pain on the other side, hip pain on both sides and nothing changed for my existing nerve pain. I refused a second injection and refused to return to the pain center. I just lived with the pain and it continued to get worse and spread. I started having GI problems and was diagnosed with IBS-D.
By the time a new doctor came to replace my other GP, I was in so much pain I could barely get out of bed. I stopped homeschooling my two kids and sent them to a good public school. I had even opted out of renewing my ghostwriting contracts that ended in 2010, as meeting those writing deadlines only increased my stress and pain. My new GP spent about an hour with me, learning about my history and what her predecessor did and didn't do. By the end of my appointment I was given a DX of Fibromyalgia and Major Depressive Disorder and a new RX for Cymbalta with Neurontin for the chronic nerve pain and Tramadol for the Osteoarthritis/Bursitis. She said to me "I promise, we'll get you your life back!"
Empowered with answers, and a promising new doctor, I went and researched as much as I could about my new condition. I found the Spoon Theory and discovered I wasn't alone! However, all I ever did was try to convince people that Fibromyalgia was real, tell people how I couldn't do what I used to because I'd run out of "spoons" too quickly, and commiserated with a dozen or so people all day. I still had no direction and didn't know what to do with my life or how to adjust. I was in a constant state of misery, not only for myself but for all the people who also suffered from chronic pain. Then I heard about the Chronically Awesome Foundation and their mission to help sufferers of ALL chronic illnesses, physical and mental, through support, resources and art therapy. What a great find! After all, Fibromyalgia was only part of my complete diagnosis. After following them on Twitter for a while, Jules and I connected. Through what I learned from the Chronically Awesome Foundation, I stopped focusing on what I couldn't do, I stopped trying to convince everyone that Fibromyalgia was real, I stopped worrying about not getting any moral support from my in-laws and I focused on what I COULD do, and loving the people who supported me openly.
Due to my newly found confidence, I decided to start my own business making hair adornments from feathers and beads, a choice I made that was heavily inspired by the Tayledras hair fashions in the Valdemar books by Mercedes Lackey. I can work at my own pace. I can keep being creative. I can return help to those who helped me and I feel productive again!
Now I have direction, I have something to do, something to focus on and a reason to get up every morning. I'm less depressed and I've surrounded myself with positive people, not only from The Chronically Awesome Foundation but from groups like Pajama Daze, Chronic Pain Babes, The American Pain Association, Fight Like a Girl and the US Pain Foundation. As my doctor and I continued discussing, researching and trying different meds to bring my pain down to manageable levels, we ended up with a regimen of water therapy, Cymbalta, Lyrica, Tramadol and a Butrans patch. I feel we've been about 90% successful and I'll take it! I still have to use a cane for short walks and my Jazzy power chair or wheelchair if we're going to a mall or convention. The point is: I'm feeling a lot more confident in myself and my quality of life has improved.
I advocate and support those who also suffer from chronic illness in a positive way and try to help others shift their focus from what they lost to what they still have. I'm also looking for inspiration from the people I chat with online. When I make a hair adornment piece inspired by a certain person, I let them know and make sure I mention their inspiration in the description on my website. I'm still learning my craft but I'm completely open to answer any questions relating to crafting, advocacy, support and the groups I'm part of. I'd love to share what I've learned!
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
JO'S JOYFUL WORK - JEWELRY CREATIONS AND PHOTOGRAPHY
At the grand old age of 22 my life has already changed in more ways than I can count. I’ve had to accept things that most people deal with in their 50’s or 60’s but my constant companion throughout has been creativity. I’ve knitted, painted, photographed, beaded, collaged and scribbled, stuck and glittered for as long as I can remember but at 18 I started putting my creativity to different uses...namely managing my deteriorating health.
Age 19 I was diagnosed with Hypermobility Syndrome (HMS) also known as Hypermobile Ehlers Danlos Syndrome (H-EDS). This diagnosis explained a lot of things like my clumsiness, my ability to injure myself with the simplest tasks and my dislike for standing still too long. I spent the next few months obsessively learning everything I could and trying to hold on to my ‘old’ self. Despite this, from the age of 19 I had quite a dramatic decline in my health. I was a dancer, I did Parkour and I worked part time teaching rock climbing and high ropes. Now, at the age of 22, I am re-training as an occupational Therapist and using a wheelchair part time. I also have chronic fatigue and have to manage daily dislocations, chronic pain, heat intolerance and IBS (to name a few). I struggled with a loss of identity for a long time after my diagnosis and, while my health failed me, the one bit of me I still had was my creativity. I found jewelery making and passed many a pain- filled hour surrounded by buttons and beads in my own little world.
I now have much more control over my health and have stopped obsessing over the loss of ‘old’ me. I focus on the ‘new’ me and what I CAN do as opposed to what I CAN’T. Don’t get me wrong, I still miss the old me and I lost more than just my old job! But the ‘new’ me is pretty cool too. Living creatively and problem solving my way through life has allowed me to grab some new bits to add to my identity. As well as studying Occupational Therapy, I play Wheelchair Basketball for the University team. I volunteer for the HMSA, a charity that helped me through some of my darkest moments, and during one of the sporting accidents leading up to my diagnosis, I finally found the courage to tell a special someone my feelings. After a few hours at the local hospital I realised he felt the same way. Addz and I have been together for just over 5 years and without the nasty H-EDS related accident, who knows if we would have got together? Who knows if any of this would have happened?
My Creativity is still alive and kicking and I love it! My Facebook page Purl Beads allowed me to showcase my work, and shift some of my many creations to loving new homes! Working on commission pieces was a great way of stepping out of my comfort zone creatively. Jewelery making is something I have managed to do even at my worst and it’s something that will always hold a special place in my soul.
Developing my photography skills has not only given me many happy hours watching birds, bees and butterflies, but I’ve been able to stay connected with the dance & Parkour community - not as a participant but as their photographer! Living Life through a lens can have beautiful results.
I have also become obsessed with Nail Art and I use it as one of the pacing tools for managing fatigue. If my nails are a mess I’ve been working too hard and resting too little! Time for a manicure!
Social Media, like the HMSA forum, Facebook & Twitter, have helped me share my experiences and learn from others. Throughout this journey, one thing really struck me: disability might close doors but it also opens them. Some of the doors it opens are pretty amazing.
Age 19 I was diagnosed with Hypermobility Syndrome (HMS) also known as Hypermobile Ehlers Danlos Syndrome (H-EDS). This diagnosis explained a lot of things like my clumsiness, my ability to injure myself with the simplest tasks and my dislike for standing still too long. I spent the next few months obsessively learning everything I could and trying to hold on to my ‘old’ self. Despite this, from the age of 19 I had quite a dramatic decline in my health. I was a dancer, I did Parkour and I worked part time teaching rock climbing and high ropes. Now, at the age of 22, I am re-training as an occupational Therapist and using a wheelchair part time. I also have chronic fatigue and have to manage daily dislocations, chronic pain, heat intolerance and IBS (to name a few). I struggled with a loss of identity for a long time after my diagnosis and, while my health failed me, the one bit of me I still had was my creativity. I found jewelery making and passed many a pain- filled hour surrounded by buttons and beads in my own little world.
I now have much more control over my health and have stopped obsessing over the loss of ‘old’ me. I focus on the ‘new’ me and what I CAN do as opposed to what I CAN’T. Don’t get me wrong, I still miss the old me and I lost more than just my old job! But the ‘new’ me is pretty cool too. Living creatively and problem solving my way through life has allowed me to grab some new bits to add to my identity. As well as studying Occupational Therapy, I play Wheelchair Basketball for the University team. I volunteer for the HMSA, a charity that helped me through some of my darkest moments, and during one of the sporting accidents leading up to my diagnosis, I finally found the courage to tell a special someone my feelings. After a few hours at the local hospital I realised he felt the same way. Addz and I have been together for just over 5 years and without the nasty H-EDS related accident, who knows if we would have got together? Who knows if any of this would have happened?
My Creativity is still alive and kicking and I love it! My Facebook page Purl Beads allowed me to showcase my work, and shift some of my many creations to loving new homes! Working on commission pieces was a great way of stepping out of my comfort zone creatively. Jewelery making is something I have managed to do even at my worst and it’s something that will always hold a special place in my soul.
Developing my photography skills has not only given me many happy hours watching birds, bees and butterflies, but I’ve been able to stay connected with the dance & Parkour community - not as a participant but as their photographer! Living Life through a lens can have beautiful results.
I have also become obsessed with Nail Art and I use it as one of the pacing tools for managing fatigue. If my nails are a mess I’ve been working too hard and resting too little! Time for a manicure!
Social Media, like the HMSA forum, Facebook & Twitter, have helped me share my experiences and learn from others. Throughout this journey, one thing really struck me: disability might close doors but it also opens them. Some of the doors it opens are pretty amazing.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
TIA MARIA'S JOYFUL WORK - STITCHERY AND SPOONS
When I was a young girl, I had many dreams of what I wanted to do for a career. For awhile, I thought I would be the next Mariah Carey or Whitney Houston. I also dreamed of being an author, a journalist, and for a brief time, a detective.
Life, of course, has a way of throwing a few curve balls at you. I became a young mother right out of high school and instead of singing for my supper, I spent the better part of a decade in various customer service positions. After a few more curve balls, I was just getting into freelance writing and editing when I wound up in an emergency room with a myriad of painful symptoms and no clear answer.
Some would say finding out I have Rheumatoid Arthritis mere months before my 30th birthday would be the biggest curve ball of all. And for a chunk of time, I thought so, too. In the early time of battling my disease, I was bedridden and angry because of it. I turned to the internet and reached out for someone, ANYONE, who could help me understand this new life I was supposed to be living.
I found a volunteer organization that not only offered me help and resources, but gave me an opportunity to work with them. Through them I not only learned that I still had so much to offer the world, I also met some of the greatest friends I've ever known.
I learned what it means to be a “spoonie” and met other women like myself. Maybe we battled different diseases, but we all had our good days and bad days. One sweet lady rekindled my childhood passion of crafting and is a big inspiration behind my store, Feelin Stitchy, where I sell custom and original cross stitched designs: favorite quotes, Mario, Harry Potter, and many others, all in whatever colors you can dream up. Stitching is something I can do on even the worst days. If my hands are too swollen to hold a needle, I dream up new designs to start when the swelling goes down.
Another lady became like an adopted sister. Sadly, she lost her battle with chronic illness last December. However, her love inspired my pet project, Spoons 4 Spoonies. These are hand painted and decorated spoons that can be ordered and shipped nearly all over. They're meant to be a symbol of the love and understanding I've received among the online chronically ill community. Often we spoonies wish we could send our extra spoons, our extra energy (when we have it!), our extra love, to those we know who are having a down day. Spoons 4 Spoonies makes that a possibility.
I've learned a lot in the last 18 months of living with RA. I'm sure there's much more that I will learn as I continue living. But I am LIVING. I now know that just because I can't work a “normal” job, I'm not useless. I'm still a mother, a sister, a daughter. I'm also a fighter, an advocate for awareness, a survivor.
I'm at bat, hitting those curve balls right back at the pitcher.
Life, of course, has a way of throwing a few curve balls at you. I became a young mother right out of high school and instead of singing for my supper, I spent the better part of a decade in various customer service positions. After a few more curve balls, I was just getting into freelance writing and editing when I wound up in an emergency room with a myriad of painful symptoms and no clear answer.
Some would say finding out I have Rheumatoid Arthritis mere months before my 30th birthday would be the biggest curve ball of all. And for a chunk of time, I thought so, too. In the early time of battling my disease, I was bedridden and angry because of it. I turned to the internet and reached out for someone, ANYONE, who could help me understand this new life I was supposed to be living.
I found a volunteer organization that not only offered me help and resources, but gave me an opportunity to work with them. Through them I not only learned that I still had so much to offer the world, I also met some of the greatest friends I've ever known.
I learned what it means to be a “spoonie” and met other women like myself. Maybe we battled different diseases, but we all had our good days and bad days. One sweet lady rekindled my childhood passion of crafting and is a big inspiration behind my store, Feelin Stitchy, where I sell custom and original cross stitched designs: favorite quotes, Mario, Harry Potter, and many others, all in whatever colors you can dream up. Stitching is something I can do on even the worst days. If my hands are too swollen to hold a needle, I dream up new designs to start when the swelling goes down.
Another lady became like an adopted sister. Sadly, she lost her battle with chronic illness last December. However, her love inspired my pet project, Spoons 4 Spoonies. These are hand painted and decorated spoons that can be ordered and shipped nearly all over. They're meant to be a symbol of the love and understanding I've received among the online chronically ill community. Often we spoonies wish we could send our extra spoons, our extra energy (when we have it!), our extra love, to those we know who are having a down day. Spoons 4 Spoonies makes that a possibility.
I've learned a lot in the last 18 months of living with RA. I'm sure there's much more that I will learn as I continue living. But I am LIVING. I now know that just because I can't work a “normal” job, I'm not useless. I'm still a mother, a sister, a daughter. I'm also a fighter, an advocate for awareness, a survivor.
I'm at bat, hitting those curve balls right back at the pitcher.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
LEANNE'S JOYFUL WORK - PRINTABLE ART AND STATIONERY
I think back to life before chronic illness and I remember how go, go, go everything was. I was a busy stay at home mum and felt I was letting my career years slip away from me.
In August of 2010, I decided it was time for me to do something other than raise my two beautiful children. I'd always really enjoyed photo-editing and digital art so I purchased a DSLR camera and got down to learning the ins and outs of photography. What started as a hobby very quickly turned into a full time career! I was thrilled people were booking my photography services and I went from offering studio family sessions to doing weekly weddings.
See, prior to all of this, I had gone through periods of feeling 'not-quite-right'. I put this down to being bored and lacking motivation. So when these familiar feelings started to creep back, I became concerned. I was later diagnosed with chronic auto-immune thyroiditis. But it was ok, because my thyroid function was perfectly normal. Yet I felt so incredibly ill! My throat ballooned and along with my constant goitre, the lymph nodes in my neck were always swollen, too. It felt like I permanently had glandular fever and soon I became frustrated with my doctors for not treating the thyroiditis.
I continued working full time whilst raising two children and taking care of my home. Eventually, after a photoshoot, I'd be almost bed bound for a week or more. I was finding it really hard to edit photos because I was, and still am, suffering from migraines 3 times a week. At the beginning of 2012, I woke up at 2am, and suddenly I felt like I was in an upside down world. There were no words to describe the surreal feelings and I'd hyperventilate every day.
Clients were trying to contact me and I was sometimes going 3 weeks before getting back in touch because I simply had no energy to even think, let alone work, in my office. I got behind on delivering images and enough was enough. I had to quit the business. Another few months passed and along with severe weight loss and the hyperventilating, I noticed I felt like I had flu any time I left the house. Life became pretty isolating and I felt like I'd completely lost myself to an illness that nobody could tell me I had.
Towards the end of summer 2012, the illness went away. I woke up feeling well and, after a few weeks of being 'me' again, I relaunched the photography business. It didn't take long before it all fell apart again, and by Christmas I was behind with my clients and struggling to book any new weddings.
I allowed the business to become quiet so I could completely stop the photography. Then Print Me Prettiful was launched.
I ran a small online boutique where I sold personalised and premade printables. Alongside printable artwork, I've sold stationery that people could print themselves. My most popular sales were my Blogger templates.
Creating this type of work was perfect for me because :
1. The work was done upfront, in my own time. I designed it all in Photoshop and pop up the listings when I wanted. Many of the items were available for instant download, so the money just rolled in and I was not obliged to be communicating on a daily basis with loads of people.
2. Because the work was done upfront, the pressure was nil. If for any reason I couldn't send a customer's digital files, I had a fantastic husband who could.
3. I could be creative and stay wrapped up in my blanket on my worse days. If I didn't feel well enough to work, it was okay, because my shop was still running in the background.
And 4. My business costs were ridiculously low because everything was done from my computer.
I've learned some important lessons along the way. People don't understand chronic illness if they don't suffer with it, especially illnesses that are difficult to diagnosis. When you are working with time limits (such as editing and delivering 900 wedding images in a week) and having to be reliable, you only beat yourself up when you find out that you can't meet expectations at that time. I upset a few clients towards the end of my photography career and I understand why they were upset. I was a terrible communicator and I never delivered on time. But I couldn't help the situation I was in. If only these clients were flies on a wall, they'd have seen how completely incapable I was of performing any tasks sufficiently. I no longer have to worry about not being able to make an appointment, or having 30-odd emails from a client who has been waiting a month for their photos. I am no longer offering terrible customer service and, instead, concentrating on my health, my children and my husband.
I am really pleased that I could carry on working, doing something I love and I hope others can achieve this. too. Working completely from home is do-able! But your health must always come first, and so long as you listen to your body, you can definitely have a comfortable working lifestyle with chronic illness.
As for my own illness, I'm undergoing many tests to get to the bottom of what is wrong. Perhaps there will never be a diagnosis, but I have learned a few ways of coping over the last year. I'm now completely gluten-free, getting the right amount of rest and sleep, and have learned to be open with my friends and family. They don't always 'get it', but they have been superb and I feel encouraged everyday just for having them by my side.
In August of 2010, I decided it was time for me to do something other than raise my two beautiful children. I'd always really enjoyed photo-editing and digital art so I purchased a DSLR camera and got down to learning the ins and outs of photography. What started as a hobby very quickly turned into a full time career! I was thrilled people were booking my photography services and I went from offering studio family sessions to doing weekly weddings.
See, prior to all of this, I had gone through periods of feeling 'not-quite-right'. I put this down to being bored and lacking motivation. So when these familiar feelings started to creep back, I became concerned. I was later diagnosed with chronic auto-immune thyroiditis. But it was ok, because my thyroid function was perfectly normal. Yet I felt so incredibly ill! My throat ballooned and along with my constant goitre, the lymph nodes in my neck were always swollen, too. It felt like I permanently had glandular fever and soon I became frustrated with my doctors for not treating the thyroiditis.
I continued working full time whilst raising two children and taking care of my home. Eventually, after a photoshoot, I'd be almost bed bound for a week or more. I was finding it really hard to edit photos because I was, and still am, suffering from migraines 3 times a week. At the beginning of 2012, I woke up at 2am, and suddenly I felt like I was in an upside down world. There were no words to describe the surreal feelings and I'd hyperventilate every day.
Clients were trying to contact me and I was sometimes going 3 weeks before getting back in touch because I simply had no energy to even think, let alone work, in my office. I got behind on delivering images and enough was enough. I had to quit the business. Another few months passed and along with severe weight loss and the hyperventilating, I noticed I felt like I had flu any time I left the house. Life became pretty isolating and I felt like I'd completely lost myself to an illness that nobody could tell me I had.
Towards the end of summer 2012, the illness went away. I woke up feeling well and, after a few weeks of being 'me' again, I relaunched the photography business. It didn't take long before it all fell apart again, and by Christmas I was behind with my clients and struggling to book any new weddings.
I allowed the business to become quiet so I could completely stop the photography. Then Print Me Prettiful was launched.
I ran a small online boutique where I sold personalised and premade printables. Alongside printable artwork, I've sold stationery that people could print themselves. My most popular sales were my Blogger templates.
Creating this type of work was perfect for me because :
1. The work was done upfront, in my own time. I designed it all in Photoshop and pop up the listings when I wanted. Many of the items were available for instant download, so the money just rolled in and I was not obliged to be communicating on a daily basis with loads of people.
2. Because the work was done upfront, the pressure was nil. If for any reason I couldn't send a customer's digital files, I had a fantastic husband who could.
3. I could be creative and stay wrapped up in my blanket on my worse days. If I didn't feel well enough to work, it was okay, because my shop was still running in the background.
And 4. My business costs were ridiculously low because everything was done from my computer.
I've learned some important lessons along the way. People don't understand chronic illness if they don't suffer with it, especially illnesses that are difficult to diagnosis. When you are working with time limits (such as editing and delivering 900 wedding images in a week) and having to be reliable, you only beat yourself up when you find out that you can't meet expectations at that time. I upset a few clients towards the end of my photography career and I understand why they were upset. I was a terrible communicator and I never delivered on time. But I couldn't help the situation I was in. If only these clients were flies on a wall, they'd have seen how completely incapable I was of performing any tasks sufficiently. I no longer have to worry about not being able to make an appointment, or having 30-odd emails from a client who has been waiting a month for their photos. I am no longer offering terrible customer service and, instead, concentrating on my health, my children and my husband.
I am really pleased that I could carry on working, doing something I love and I hope others can achieve this. too. Working completely from home is do-able! But your health must always come first, and so long as you listen to your body, you can definitely have a comfortable working lifestyle with chronic illness.
As for my own illness, I'm undergoing many tests to get to the bottom of what is wrong. Perhaps there will never be a diagnosis, but I have learned a few ways of coping over the last year. I'm now completely gluten-free, getting the right amount of rest and sleep, and have learned to be open with my friends and family. They don't always 'get it', but they have been superb and I feel encouraged everyday just for having them by my side.
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
KATIE'S JOYFUL WORK - JEWELRY CREATIONS
My name is Katherine Dunn. KD or Katie are my creative personas. I've lived with chronic pain since I was 10, and constant pain since 2005. I have fibromyalgia, a lumbar hernia, disc degeneration, chronic back & sciatic pain, migraines, endometriosis, and chronic fatigue syndrome. I grew up with intimate knowledge of chronic illness. My mother has had Lupus for over 40 years, and my sister, my confidant and friend, has had migraines her entire life. I think this experience and built-in support group has helped make me stronger and made living with illness easier. I married and had my 2 children in my early twenties. That was a blessing because those were my best years! We live in the Laurentian mountains of Quebec, Canada, with our giant Wooly Husky, Balto.
Reading the Spoon Theory story (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/) really hit home, changed my perspective and opened up a whole new world to me. I met many other "spoonies" (people with chronic illness, fatigue and/or pain) and joined support groups. The volumes of support I've received online really makes a big difference in my home life!
My best tool for surviving chronic pain is my creativity, a true blessing. I use it as an outlet, and it helps me relax. Whenever I sketch, scrapbook, take photographs or make jewelry, I forget the pain. It doesn't disappear completely, but it is much more tolerable while I am completely absorbed in a project. I actually have to be careful because I can manage to sit for too long creating, and later the pain is much worse. So I choose good positions, like lying in bed, and I set an alarm to remind myself to get up and move.
I used to be a teacher, then a private tutor. Now, as well as making jewelry, I am working on my Masters in distance education, and praying I will find a job I can do from home. As someone with a permanent disability, I receive a scholarship as long as I take 6 credits for Fall and Winter session. In North America, this is a great option for people with severe disabilities.
The topic for my thesis is "developing a website to better serve the needs of students with disabilities at Teluq University." Ninety percent of my thesis has been focused on improving disability services at my university. Studies show that students that receive accommodations are more likely to complete their courses, but more than 50% do not apply. I'm hoping to change that.
I am passionate about my studies, though research and writing are a challenge with fatigue, brain fog and pain. In all honesty, the dream I yearn for with all my heart is to only make jewelry. As much as I love teaching and am passionate about disability services, I want a job I can do no matter what, and jewelry-making fills that requirement!
My daughter showed me how to make a bracelet in the summer of 2010 and I was hooked. I've been making jewelry ever since, and started selling online in 2012. In 2015 I split my shop into two because my original shop, KD Serenity Creations, had become known exclusively for inspirational and awareness jewelry. Most recently I've introduced a new line of jewelry called KDS Forever Collection, designed to last, crafted in stainless steel, sterling, pewter and aluminum. I wanted to set up a shop called Swirls of Whimsy for my purely artistic creations. My customers helped me name it.
In both shops I offer a wide variety of creations. No matter what I am making, I keep comfort and limitations in mind. For example, I create hypoallergenic jewelry for those with lupus or allergies; light-weight necklaces for people with arthritis or fibromyalgia; inexpensive pieces for those on disability pensions; inspirational pendants for those who need a boost; and many more. I try to keep my potential customers in mind with every creation. I believe everything I make is just waiting to be found by the person for whom it is meant.
I've gotten a wonderful response from my customers. I have 47 five star reviews at the time of writing. Many enjoy my personal handwritten note and the custom-made surprise gift I include with each order. The positive feedback has brought tears to my eye, and raised my spirits. They give me a sense of purpose, making me feel like, in a small way, I am making a difference.
Recently I created a non-profit initiative called KDS Serenity Project to send out Serenity Care Packages. I invite people to nominate themselves or others if they need comfort and can’t afford something nice for themselves. The packages contain a piece of jewelry, a charm, a package of "doses of encouragement" (little notes of encouragement), a Spoonie Survivor certificate and a personal letter from me. I see it as a gift of happiness and hope. People can message me on Facebook to apply. Donations can be made through my Etsy shop, KD Serenity Creations. I have set up a variety of listing with profits going to the project.
Maybe you'd like to start a jewelry-making business? The way I learned to make jewelry was quite haphazard. My daughter dragged me into a bead shop to chose beads for herself, and I fell in love! She taught me the basics of making a bracelet, and I built on that, mostly from observation. I started with a tiny mini flat nose plier and scissors, and within a week I was hooked! A few years into jewelry making, I bought a few books to fill in the gaps in my knowledge. I don't follow instructions, but it is important to find out all you can about tools and the purpose they serve. I found a great book for wire work, which is the easiest way to start. The two books I recommend most, especially for pajama warriors, are:
You can buy awesome looping pliers tools that make it easier, but they are more costly. For beginners, I recommend inexpensive ergonomic multi-tools. Here is one multi-tool and one kit that are easier on your hands and wrists:
Amazon.com: Jewelry Beading 4 In 1 Pliers Round Nose, Cut Wire, Flatten, Close Jump Rings: Home & Kitchen
Amazon.com: Cousin Precision Comfort 3-in-1 Plier for Jewelry Making: Arts, Crafts & Sewing
I'd be happy to answer any jewelry questions you may have at [email protected]
Over the past three years I have learned to live with pain and, although I still have many limits, I lead a happy life. It seems unbelievable, but I don't suffer from depression. I did years ago, but now I am proactive. I watch comedies, I laugh everyday, I pray, and I make time for myself. I even finally accepted that it is okay to watch soaps. They are a great distraction from the realities of everyday life! I have low days, but I thank God that I can pull out of them. I'm blessed with my creativity and understanding helpful family and friends!
Reading the Spoon Theory story (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/) really hit home, changed my perspective and opened up a whole new world to me. I met many other "spoonies" (people with chronic illness, fatigue and/or pain) and joined support groups. The volumes of support I've received online really makes a big difference in my home life!
My best tool for surviving chronic pain is my creativity, a true blessing. I use it as an outlet, and it helps me relax. Whenever I sketch, scrapbook, take photographs or make jewelry, I forget the pain. It doesn't disappear completely, but it is much more tolerable while I am completely absorbed in a project. I actually have to be careful because I can manage to sit for too long creating, and later the pain is much worse. So I choose good positions, like lying in bed, and I set an alarm to remind myself to get up and move.
I used to be a teacher, then a private tutor. Now, as well as making jewelry, I am working on my Masters in distance education, and praying I will find a job I can do from home. As someone with a permanent disability, I receive a scholarship as long as I take 6 credits for Fall and Winter session. In North America, this is a great option for people with severe disabilities.
The topic for my thesis is "developing a website to better serve the needs of students with disabilities at Teluq University." Ninety percent of my thesis has been focused on improving disability services at my university. Studies show that students that receive accommodations are more likely to complete their courses, but more than 50% do not apply. I'm hoping to change that.
I am passionate about my studies, though research and writing are a challenge with fatigue, brain fog and pain. In all honesty, the dream I yearn for with all my heart is to only make jewelry. As much as I love teaching and am passionate about disability services, I want a job I can do no matter what, and jewelry-making fills that requirement!
My daughter showed me how to make a bracelet in the summer of 2010 and I was hooked. I've been making jewelry ever since, and started selling online in 2012. In 2015 I split my shop into two because my original shop, KD Serenity Creations, had become known exclusively for inspirational and awareness jewelry. Most recently I've introduced a new line of jewelry called KDS Forever Collection, designed to last, crafted in stainless steel, sterling, pewter and aluminum. I wanted to set up a shop called Swirls of Whimsy for my purely artistic creations. My customers helped me name it.
In both shops I offer a wide variety of creations. No matter what I am making, I keep comfort and limitations in mind. For example, I create hypoallergenic jewelry for those with lupus or allergies; light-weight necklaces for people with arthritis or fibromyalgia; inexpensive pieces for those on disability pensions; inspirational pendants for those who need a boost; and many more. I try to keep my potential customers in mind with every creation. I believe everything I make is just waiting to be found by the person for whom it is meant.
I've gotten a wonderful response from my customers. I have 47 five star reviews at the time of writing. Many enjoy my personal handwritten note and the custom-made surprise gift I include with each order. The positive feedback has brought tears to my eye, and raised my spirits. They give me a sense of purpose, making me feel like, in a small way, I am making a difference.
Recently I created a non-profit initiative called KDS Serenity Project to send out Serenity Care Packages. I invite people to nominate themselves or others if they need comfort and can’t afford something nice for themselves. The packages contain a piece of jewelry, a charm, a package of "doses of encouragement" (little notes of encouragement), a Spoonie Survivor certificate and a personal letter from me. I see it as a gift of happiness and hope. People can message me on Facebook to apply. Donations can be made through my Etsy shop, KD Serenity Creations. I have set up a variety of listing with profits going to the project.
Maybe you'd like to start a jewelry-making business? The way I learned to make jewelry was quite haphazard. My daughter dragged me into a bead shop to chose beads for herself, and I fell in love! She taught me the basics of making a bracelet, and I built on that, mostly from observation. I started with a tiny mini flat nose plier and scissors, and within a week I was hooked! A few years into jewelry making, I bought a few books to fill in the gaps in my knowledge. I don't follow instructions, but it is important to find out all you can about tools and the purpose they serve. I found a great book for wire work, which is the easiest way to start. The two books I recommend most, especially for pajama warriors, are:
- Healing Jewelry by Mickey Baskett Healing Jewelry: Using Gemstones for Health & Well-Being: Mickey Baskett, Inc. Prolific Impressions: 9781402735189: Amazon.com: Books
- Inspired Wire by Cynthia B. Wuller Inspired Wire: Cynthia B. Wuller: 9780871162564: Amazon.com: Books
You can buy awesome looping pliers tools that make it easier, but they are more costly. For beginners, I recommend inexpensive ergonomic multi-tools. Here is one multi-tool and one kit that are easier on your hands and wrists:
Amazon.com: Jewelry Beading 4 In 1 Pliers Round Nose, Cut Wire, Flatten, Close Jump Rings: Home & Kitchen
Amazon.com: Cousin Precision Comfort 3-in-1 Plier for Jewelry Making: Arts, Crafts & Sewing
I'd be happy to answer any jewelry questions you may have at [email protected]
Over the past three years I have learned to live with pain and, although I still have many limits, I lead a happy life. It seems unbelievable, but I don't suffer from depression. I did years ago, but now I am proactive. I watch comedies, I laugh everyday, I pray, and I make time for myself. I even finally accepted that it is okay to watch soaps. They are a great distraction from the realities of everyday life! I have low days, but I thank God that I can pull out of them. I'm blessed with my creativity and understanding helpful family and friends!
Website: www.kdserenity.com
Email: [email protected]
Etsy 1: https://www.etsy.com/ca/shop/KDSerenityCreations
Etsy 2: https://www.etsy.com/ca/shop/swirlsofwhimsy
Facebook: www.facebook.com/Katiecreations
Twitter: https://twitter.com/DunnKcreations Pinterest: http://www.pinterest.com/Katiecreations/
Photobucket: http://s1272.photobucket.com/user/KatieCreations/slideshow/
Instagram: http://instagram.com/katiecreations
If you would like to inspire others with YOUR story of Joyful Work,
please leave us a brief description with contact information on our Contact Us page.
Thank you!
please leave us a brief description with contact information on our Contact Us page.
Thank you!