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An Introduction to Lyfebulb Ambassador, Dane Johnson

Dane Johnson is a Natural Medicine Practitioner specializing in gut health. His expertise was established through his perseverance during a life threatening battle with Crohn’s Disease. He now runs a company and a non profit which aims to empower those dealing with Chronic Auto Immune Diseases. He is a recognized Motivational speaker, Actor, Host, Life Coach and leader in the natural medicine community. He looks to work with brands which embody like minded efforts and help build a stronger tomorrow.

Dane attacks Crohns/Colitis through his program – S.H.I.E.L.D. – he believes it’s not just one thing that creates a healing effect but everything combined. He loves to say Healing starts in the mind and the great energy always prevails! He uses a variety of nutritional plans and personalized plans to meet each specific persons needs.

To learn more about Dane and his journey, check out this podcast!

Pinup Model

Photo by Autumn Luciano

First of all, let me say what an honor it is to speak on behalf of all of my hardcore femmes with IBD out there. When I had my first surgery, I couldn’t stand the thought that anyone could understand what I was experiencing. I felt very isolated. I grew resentful of anyone who claimed to understand my position in life. I owe a great debt to supportive women in the IBD community, for it is through them that my resentment passed and became acceptance. For anyone struggling with these feelings, know that you are not alone.

I was diagnosed with Ulcerative Colitis in January of 2007. At 17, I had absolutely no way of comprehending what that meant at the time. Looking back, I envy my own naïveté at the time. In many ways, I think it saved me a great deal of emotional agony. It wasn’t until after my first surgery in 2011 that I began to understand that Colitis was a very destructive, very permanent diagnosis. I thought I knew what “tired” meant. I thought I knew what dying felt like, prior to my first surgery.

With four years of flare-ups under my belt, I was no longer a candidate for Remicade. My lymph nodes were swelling, and a major concern was Lymphoma. Imuran, steroids and various other medicines I can’t recall, were also no longer options. Immunodepressed and exhausted, I was 22 and living with a houseful of my closest friends. After several trips to the ER, I was greeted by a surgeon who coldly explained that I could either have surgery or die within the next few days. She left the room after explaining that I would “Never feel normal again.” And that I would have to get used to it, which would be hard for a “Pretty girl.”

Let’s be real. I was far from feeling like a pretty girl. I was on steroids for senior prom, and my boyfriend at the time (now husband) had to nair my back so I didn’t look like a chipmunk. I had bloated until my skin hurt, broke out into acne hell, and now I was expelling blood at a rate that was both horrifying and fascinating to my doctors. I was already pretty used to not being a pretty girl. I was the girl who cried watching the Olympic gymnasts because they could move.

Pinup 2Photo by Autumn Luciano

Three surgeries, a surgeon change, failed j-pouch, two ostomies and an astronomical amount of pain drugs later, I came out on the other side. I do mean that literally. I had lost 40 pounds and weighed a mere 90 pounds soaking wet, fully clothed. You could count every bone in my body, and the surgeries had ravaged my once adorable tummy. I didn’t just have a thigh gap, it was the Grand Canyon. My hair had fallen out from lack of nutrition, and I could barely walk to the bathroom, only feet from my bed. My skin was sallow and pale, my body was limp and fragile. But I was alive.

Being pretty was the last thing on my mind, I felt like I had been thrown into battle without armor. You didn’t make it out pretty, much less alive, without armor. But I did.

 

Being who I am, with some authority issues, being told what I couldn’t do was a challenge. After waking up every day for a year thinking you might die, nothing seems beyond your reach. So I started to play again. I ran, I worked out three hours a day and started to kick box. I taught dance at a summer camp. I got married. I started killing it with my dream job. I had a normal life.

Pinup 3Photo by Steven Jon Horner

It wasn’t just good enough to have a normal life. (Even though that was all I begged for all through my surgeries. Just a chance to be normal.) I wanted so much more, being finally capable, three years later. Looking at my body, and knowing that it hadn’t really been mine for nearly 10 years, I wanted ownership of it again. I had eaten well, I had trained it, groomed my muscles and rewarded years of struggle with a strong and healthy body.

Pinup was an unknown universe to me at the time. I had grown up with a love of old things, partially raised by my grandparents. It was well known that I enjoyed dressing in vintage clothing, and I had begun experimenting with my hair and makeup. I was starting to feel like myself again. Blow drying wasn’t exhausting. Getting ready was fun again, not a daunting tedium.

I was invited by a high school friend of my husband’s to a Retro night/Pinup competition at a local bar in the winter of 2013. I was prim, in a vintage 40s silk dress, with modest and frazzled victory rolls. I watched the girls (who were all so perfect in every way) compete, and I knew I was so in love with their culture. Everything about what they were saying and doing spoke to my core. After the competition, the musicians began to play and I noted that nobody was dancing. Since my health had been regained, dancing had become one of my very favorite things. I walked to the table to girls and leaned in over the shoulder of the dainty pin up who had won. “You know, everybody here will dance if you do.” I said, and we launched the dance floor. There I was. The very first night I had been able to do everything the doctors told me I would never do again. Dancing merrily and embarrassing the heck out of my introverted husband.

It snowballed from there. I didn’t know then that the winner that night would become one of my best friends, Ada Vice. Or that Gabbey Music, joined at her hip, would fold me lovingly into the world of Pinup. With the help of those two, and the lovely Alfie Jean, I had begun practicing the art of vintage beauty. It wasn’t until a year later that I would realize I had not only reclaimed my life, but all of the things fate stood to take from me before I ever knew I wanted them.

Pinup 4Photo by Autumn Luciano

My body has become such a beautiful thing to me. Not because it seems to fit the societal standard, I feel very much that I won the genetic lottery there. I feel that way because it has carried me through some of the most terrible and devastating things a human can live through. With more resilience that I had ever given it credit for previously, it stretched, and it shrank. It is beautiful because it is mine. Scarred, tired, radiant, strong, and mine. It is through pinup that I realized this, and I continue to model for me. For the girl who dreamed of a normal life, and got so much more.

xoxo,

Stella Swoon

Originally published on  http://www.girlswithguts.org/2016/01/14/your-stories-stella-swoon-pinup-model/

 

Girls with Guts, The Power of a Sisterhood

When we started Girls With Guts almost 4 years ago (wow!), we wanted to share stories here on this blog about empowerment. Right from the beginning we knew the power of shared experiences and connecting with other people who can related to you. It wasn’t until our first retreat in 2013 that the idea of a “sisterhood” became a common phrase when used in relation to Girls With Guts. The best part about this term being used in conjunction with GWG is that we (the board) didn’t associate that term with ourselves, but it was you, our clients who started referring to yourselves as a sisterhood.

I consulted a lot of sources on the meaning of a sisterhood for this post and this is what I found:

Merriam-Webster defines a sisterhood this way:

1a :  the state of being a sister  bsisterly relationship

2:  a community or society of sisters; especially :  a society of women in a religious order

3:  the solidarity of women based on shared conditions, experiences, or concerns

When I asked my friends this is what they said:

“A collective, global community of women supporting, empowering, and backing each other up.”

“Group of women who support each other.”

“With a common thought or to attain a common goal.”

“Love, support, and honesty.”

“The Shared experience, common voice, and innate bond.”

“Love, support, understanding, non-judgmental. Open communication. Not intentionally hurting one another. Trust. Solace. Forgiveness. Acceptance.”

Wow! That is some powerful stuff! The resounding commonality is that a sisterhood is a support network of women working together. “A solidarity of women based on shared conditions, experiences and concerns.” That sentence alone could practically be our mission statement. Girls With Guts is based in the idea of supporting each other, sharing experiences, loving one another, and most importantly empowering each other through our diseases. The foundation of what we were built on is that women have a different journey than men do when it comes to IBD (and life in general). Women are taught from a young age to fight against each other as opposed to supporting each other and that is something that we are working adamantly to change. But we need your help! I encourage you all to look at your interactions with the women in your life. All of the women in your life, not just your IBD friends, and consider if you are building them up and if they are doing the same for you in return. It’s no secret that I am a modern day feminist and believe strongly in the power of a sisterhood. Girls With Guts would not have gotten this far if it wasn’t for the sisterhood of my friends and family, as well as our wonderful clients who created the sisterhood we have here. Girls With Guts belongs to you, it is yours. It is your gift and responsibility to make sure that it stays a supportive and nurturing space.

For me, sisterhood is beautiful thing because we create it and therefore we control what it looks like. I am apart of a few sisterhoods that are supportive, encouraging and full of love. In the end, I know that a sisterhood is what I make of it, what I put in is what I get out and all of that jazz. It is an entity based in honesty, it’s free of judgement and negativity because that is the energy that I put into it. Much like most of life, and Girls With Guts in general, it is your journey and you will get out what you put in. This not only encourages us to take care of ourselves but also one another. In a sisterhood, we are also responsible for our sisters.

I’d love for you to write in the comments what a sisterhood means to you and why it is powerful.

Originally published http://www.girlswithguts.org/2016/02/17/the-power-of-a-sisterhood/

My Journey

My name is Shayna.  I am a 35 year old woman living in the Boston area.  I spend my days working as a second grade teacher in a small town outside of the city.  When I am not working you will find me with my friends and family enjoying beach trips, traveling, cooking, shopping, reading, attempting to be a runner, taking photographs, laughing, AND navigating my journey with IBD.

I have the Inflammatory Bowel Disease (IBD) known as Ulcerative Colitis (UC).  Ulcerative Colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.  What information is left out of that definition, is that UC can be a very silent, private, embarrassing, and invisible chronic illness.  I was diagnosed with UC when I was 18 and a brand new freshman at the University of Massachusetts at Amherst.  I was so excited to go to college and be away from the small town I had grown up in.  Instantly I made great friends and pledged a sorority.  Life was fantastic and I really was enjoying my first year away from home.  But around November I can remember waking up one morning in my dorm and feeling awful.  I knew something was NOT right.  I had a fever, pain, I was running to the bathroom constantly, and my stomach was so distended even a light touch hurt.  I was so embarrassed by the never-ending diarrhea I didn’t tell anyone what was going on, not even my mom who is a nurse and who I always went to if something was wrong.  At one point after weeks of suffering I started to withdraw from everything.  I stopped going to classes because I couldn’t make it from one building to another without having to stop at a bathroom.  For the first time in my life my grades dropped and I just couldn’t keep up with the work.  I no longer wanted to hang around with my new friends and sorority sisters, and would spend my nights and weekends in bed watching TV or sleeping for an abnormal amount of time.  Only due to sheer desperation I finally told my mom what was going on.  Within days after telling her she had picked me up at school and I had an appointment with a gastroenterologist (GI) doctor and a scheduled for my first colonoscopy.

On the dreaded scope day I was scared and the awful and miserable prep medications didn’t help at all.  Luckily because my mom worked at the hospital where the procedure was being done they allowed her into the procedure room with me and she held my hand the entire time.  I remember being conscious and the doctor taking one look at my large intestine and announcing that I had Ulcerative Colitis.  In that moment my mind and the world around me went still.  I couldn’t hear what was being said.  All I could think was:  what is Ulcerative Colitis?  He must be wrong?  Not me!  At some point I looked at my mom and she was crying so I knew this couldn’t be a good thing.  We went home that day with some medications that I knew nothing about and started to research IBD.  At the time there was very little information about the disease and the options for treatment were scarce.  I can remember sitting with my mom and making her promise not to tell anyone about my illness, not my grandparents, my aunts, cousins, sister, or friends.  I felt embarrassed because I had already convinced myself that I had caused this and it was my fault that I had this disease.

Over the next four years of college I spent most of the time trying to hide my illness from roommates, friends, and professors.  If I was sick instead of calling the doctor or letting a professor know that something was going on I just stopped going to classes.  I would shut out friends when I was sick and sometimes just go home without telling anyone.  I didn’t take my medications responsibly and truly believed I could live without them.  It was extremely difficult to live the life of a college student and manage a disease that I knew nothing about and wasn’t willing to accept.

Finally after years of failed medical treatments and many, many hospitalizations we reached the point where surgery was the only option.  In 2004, at 24 years old, I underwent major surgery to remove my colon and create an internal pouch called a J-Pouch.  A J-pouch is an internal pouch to hold stool that is created from the last part of the small intestine (ileum) and attached to the anus or the remainder of the rectum. The terminal ileum is sewn back onto itself to form the shape of the letter “J.” This pouch functions as a replacement for my large intestine.  This surgery was done in two separate stages and during the first stage I received an ostomy.  An ostomy is a surgical procedure, in which an artificial opening is made to permit the drainage of waste products outside of the body.  The recovery from this surgery was extremely difficult.  I felt very alone and as though I had no control over my body.  This external bag was not an easy thing to deal with as a 24 year old female.  I felt so different from my friends and was envious of how different their lives were from my own.  BUT with the support of my family I made it through and after 13 weeks the second stage of the surgery was performed, my ostomy was reversed and my J-Pouch was connected.  Surgeons and doctors told me that these surgeries would CURE my disease and I was so excited to start living my disease free life.  Years later I found out that this statement about being “cured” was sadly not true.

In the past ten years, since my original J-Pouch surgery, I have undergone five other surgeries, been hospitalized more times than I can count, developed a chronic medical issue called Pouchitis, taken many medications with terrible and unknown long term side effects, been forced to go on short term disability for months at a time, and suffered from extreme pain and diarrhea because of this unremitting illness.  During my last surgery my doctors found that I also suffer from endometriosis.  Endometriosis is a condition resulting from the appearance of endometrial tissue outside the uterus that causes pelvic pain.  This diagnosis is very new to me and has now become part of my journey.

My illness is part of me every day.  I wake up with it, I eat with it, I work with it, I socialize with it, it comes on vacation with me, I go to sleep with it each night, and because this I have had no choice but to accept it and embrace MY life.  Over the years, I have learned that sharing my story is a gift.  As I opened up about my illness, I was accepted by friends, family, and even strangers who could relate because they knew someone with IBD or had IBD themselves.  I have had the opportunity to share my story with people who are newly diagnosed and I truly know how important it is for them to hear that I understood exactly what they were going through and that I survived.  It is my goal in life to continue the conversations about this very invisible illness and to advocate for myself and for the people who just aren’t ready to speak up quite yet.

I live an incredible life with my boyfriend, family, and friends.  I continue to work at what I believe is the very best job in the world as a teacher.  In spite of this illness I have done so many things…received my Master’s degree and CAGS degree, traveled all over the United States, purchased my first home, and laughed each day with the people whom I love the very most.  There were days where I believed none of this was possible, each day is hard but I AM a survivor, a fighter, and I AM stronger than I ever thought I could be.   I hope you will continue to read about my journey and begin to share your own.  When were you diagnosed?  Are you able to share your journey with others?

Xoxo, Shayna

Falling Into Place – Restarting My Life with an Ostomy

It was an exciting day as I stepped out of my car door, onto a new college campus.  It was an environment filled with more new people than I could count, and of course a jumble of emotions one cannot control.   Oh yeah, and not to mention the ostomy I was sporting along with a suitcase full of supplies and all the medications I would need for the semester.  Entering college was hard, and with a chronic illness I expected it to prove even more challenging.  Surprisingly, I was wrong.

You may be asking, “what is an ostomy?” An ostomy is an artificial opening on the stomach, created during an operation such as a colostomy or ileostomy.  It is a “new” channel for waste to exit the body during the digestive process.  It can be temporary or permanent.

My Story

I thought life could not throw me any more surprises after nearly ten years of being diagnosed with Inflammatory Bowel Disease (IBD), and of course I was wrong!  I “restarted” my life two years ago when I came out of surgery with my ostomy.  Although it has been the hardest battle, I feel I have truly won.  I have my life back, and there is nothing more that I could ask for.  I have learned that every day is a new day and what you make of it is up to you.

Attending college and moving away from home was one of the accomplishments I was able to achieve with starting this “new life.”  It was the best feeling until I got there and thought “what are people going to think of me? How do I explain my disease or do I even have to? Do people even know what an ostomy is? What if….?” The list goes on and on, and although I tried to tell myself to move forward confidently, it was only human to have these questions.

The only way I found answers was through my experiences.  I found that people are going to think of you the way you think of yourself, so be confident and kind.  Explaining my Crohn’s went one of three ways; either people were really interested and asked questions, some already knew what it was, and others were extremely confused and just said “oh okay, well feel better.” Explaining Crohn’s was easy to me.  On the other hand, I was very nervous about explaining my ostomy. To me the circumstances of explaining my ostomy were much harder for a number of reasons.  Chronic diseases can also be known as invisible illnesses, and up until I had an ostomy everything about my illness was just that, invisible.  Although it was and is extremely frustrating to explain how sick you are when you “look fine,” it is also sometimes easier to not explain at all. I was always secretly happy that no one could “see” my disease.

My new ostomy took away that invisible feeling. The clothing I wear is just like everyone else, and more times than not, if not at all, no one can tell I have an ostomy.  The toughest situations I have had were going to the beach and going out on dates. I was so worried about what I would wear, especially when it was time to hit the beach.  It took a while but I found my niche, and that would be anything high-waisted!  These clothes allow me to be comfortable and cute at the same time.  Everyone is different, I know people who go to the beach and do not cover up their ostomy, which takes a lot of guts. No pun intended.

Dates can also be hard because sometimes your date may want to cuddle up with you and watch a movie, or something like that. It is hard for individuals with an ostomy as it can take a while to open up and share your life about living with an ostomy.

 

Life Moving Forward

I am in the process of finally learning how to let go and live my life.  I have learned you do need to tell anyone about your ostomy or your scars until you are ready.  If they cannot accept you, they are not worth another second of your time.  Either people are supportive but know that your ostomy does not define you, or they are too caught up in their own lives and do not even know you have one!  Most people do not care.  What a relief!

Although many others do not mind, it does not make it easier to live life with an ostomy.  Personally here are a few tips I find to be helpful while living with an ostomy:

  • Do not label yourself as someone who has an ostomy. You are still the person you are, and the person you want to become.  Just like before, you can accomplish anything.
  • An ostomy does not limit you by any means. I have been hiking, tubing, and spent all winter snowboarding down some of the biggest mountains in New England. Guess what, during these trips I did not have to worry about the bathroom as much so I had more fun!
  • Your self esteem will change because your life is changing, but you have to get back out there because once you do you will never turn back.
  • Although at times it may seem like everything is crashing down, tomorrow will be better.  Life does get better.

Living with a chronic illness day to day is not easy, but living through experiences over time can help.  Free yourself of all the things you think you are “supposed” to be.  All that matters is that you are happy, and if you are, then you are doing something right.  College and my experiences has taught me to feel comfortable in my own skin.  Once you are, everything else will fall into place.

 

Finding Your Support System

teen girls groupI truly believe finding a support system of chronic disease “peers” is important to maintaining emotional and physical wellness.  I myself am a patient diagnosed with ulcerative colitis, and have undergone two major surgeries to have my colon removed.  Since surgery 10 years ago I have been in excellent health, and have since become an advocate for those living with chronic disease and feel strongly about finding the right support system.

When I was diagnosed with UC at age 16 I did not know anyone else with the condition.  No one in my family had a form of Inflammatory Bowel Disease (IBD) and I had never heard of this condition.  Learning about the disease explained a lot of my symptoms which had gone on for many years prior, but it did not comfort the “alone” feeling that was lingering.  While feeling “alone,” I also had an extreme anxiety and fear about sharing the “secret” of my health condition with anyone.  I begged my parents not to tell any friends or family and talked about my disease to no one.  I continued to play sports and go to high school, all the while putting a lot of pressure on myself to fit it and not be “different.”  The symptoms of IBD can be quite embarrassing and hard to hide.  The side effects of medications can cause physical changes too.  I was not fooling people, because it was obvious I was sick, but I would continually deny those accusations.

Now 29 years old, I look back and wish I could have shook myself and said- “do not be embarrassed, you did not do this to yourself!”  Being a teenager was hard enough, and I really wish someone pushed me to talk to someone.  There are SO many resources out there, and so many people who want to give support.  We need to make sure to get those connections in place.  There were times when I wanted to give up living because I felt so different and felt like the cycle of IBD flares and medication side effects were not going to end.  Most of the reason for wanting to give up was because I felt alone in this experience.  Of course my parents tried immensely to help me, but not even one doctor offered to put me in touch with a social worker/counselor or organization that offered resources to families and children managing chronic illness.  I would like to think things have improved in the healthcare system since, and especially in a setting created for children and teens.

After regaining my health, my experience drove me into a world of wanting to provide support for those teens struggling to manage a chronic disease.  My personal mission: “no one should ever feel alone.”  Luckily, I have been able to work with some amazing organizations providing support and directly impacting people living with chronic diseases.

I connected with the Crohn’s & Colitis Foundation of America when I was 20 years old.  I was thrilled to find an organization to connect with others going through the IBD experience and immediately signed up to be a counselor for their Camp program, attended their education events, and then eventually started a support group for teen girls managing IBD.  Thereafter finishing my masters program in Mental Health Counseling I was offered a job with the CCFA National Headquarters.  I joined their patient education team and was able to provide education and support to IBD patients all across the U.S.  It was the perfect fit for me and I am so grateful for all I was able to do in working and volunteering with CCFA.

As many of us do, I craved a new challenge and in early 2015 I was introduced to Lyfebulb.  I truly know and believe that our team here will positively impact those affected by chronic disease.  We are a team, we are patients, we are family members of patients, and we are trained in understanding the physical and emotional aspects that come along with having a chronic illness.  While Lyfebulb’s main goal is not to provide counseling and support services to patients, we are working hard to invest in companies that will create quality of life improvements in the near term.  And while we do that, we are also creating a patient community where we hope to hear your voices, share experiences, and together support one another.

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