“For the loved ones we’ve all lost, for the families that we can still save…let’s make America the country that cures cancer once and for all.” This powerful statement from President Obama came just under a year ago, as he gave his final State of the Union Address. It was then, he announced a nationwide Cancer Moonshot initiative – an initiative with the end goal to cure cancer!
At the charge of this initiative we have Vice President Joe Biden. VP Biden has had a very personal connection with cancer. In May 2015, he lost his son, Beau, to brain cancer. Beau passed away at the very young age of 46. He was a lawyer by training, and joined the Delaware National Guard in 2003 serving as a major in the Judge Advocate General’s Corps. In 2008, he was deployed in Iraq – during his father’s run for Vice President.
Vice President Biden explained how the Moonshot is not necessarily a time bound campaign. It’s more than that. “The Cancer Moonshot is a movement that lives in communities across the United States and the world — and it will live long after we leave office,” He continued, “Mr. President, we can’t afford for it not to, because the need is too great and the promise even greater.”
Cancer Moonshot Summit
June 28th, 2016 the Cancer Moonshot Summit was hosted at Howard University in Washington D.C. Not limited to this location, mini-summits were held at more than 270 locations across the country. At this summit, VP Biden, along with over 350 researchers, oncologists, data and technology experts, patients, families and advocates, would come together to discuss the goal to double the rate of progress in cancer prevention, diagnosis, treatment and care.
Huge strides have been made in cancer treatment over the last year. One method in particular has been immunotherapy.Immunotherapy is a method of treatment using one’s own immune system to work smarter and harder to combat disease. There are a variety of different immunotherapy treatment types, but one in particular that has shown hope this year is called monoclonal antibody drugs (anti-PD1 or anti-PD-L1).
This targeted therapy can be used on it’s own, or in combination with other types of treatments. The specific drug, Keytruda (generic name pemrolizumab), is one in particular that has been used to treat a variety of different types of cancer. This type of drug targets specific sites or proteins, within cancer cells. The pro to this is that it targets bad cancer cells and leaves your bodies normal cells alone, unlike traditional treatments like chemotherapy and radiation, that can actually hurt the rest of your body, while trying to get rid of cancer cells.
In October 2015, Keytruda was FDA approved to treat non-small cell lung cancer. Just over a year later in October 2016, it was approved as first-line treatment of certain patients with metastatic non-small cell lung cancer. This means, it is not only an approved treatment method, but it is actually the first option – as opposed to traditional treatments like chemotherapy, radiation and surgery. With this drug’s success, it is being used in new clinical trials for other cancers, like mesothelioma.
This is a huge feat, and goes to show that emerging treatment methods can really make a difference in how those with cancer are being treated.
To Infinity and Beyond 2016
Inevitably, along the way to finding a cure for cancer, there will be hurdles and barriers. Luckily, the first year of the Cancer Moonshot initiative has proven to be successful in terms of rethinking how we currently view and deal with cancer. More efforts will be put into technology, data, diagnosis, treatment and prevention. Eventually, the work being done can bring us to a cure. Along the way, the Moonshot will be bringing plenty of benefits to those affected by cancer!
Here is a wonderful guest post and interview with Debbie Rosas, a Health Activist who has received many WEGO Health Activist Award nominations for her work in creating the Nia Technique. We thought this would be an opportunity to learn more about what the Nia Technique is and get to know a bit more about why Debbie is such an inspiration to her community. Thanks to Jenny Block for writing this post – it was fascinating to hear about Debbie’s journey toward advocacy and this new way to seek healing and self-empowerment. –Amanda
Debbie Rosas, Co-founder of Nia Technique
By Jenny Block
Debbie Rosas spent her childhood plagued by illness – eye, ear, nose, and throat infections; severe allergies; debilitating migraines; psoriasis and eczema from under her arms to her hands; a tumor that required removal when she just two months old. She could go weeks on end without being able to see, hear, smell, or taste.
She was diagnosed with learning disabilities, a speech impediment, dyslexia, and labeled “slow” when it came to learning. She didn’t want anyone to touch her. She grew to feel out of touch with her body and even disgusted at the sound of her name, which she associated with being called out of class for “special” classes.
It’s hard to imagine that if you meet Rosas now. Teaching, training, writing, speaking, and impossibly in shape. What changed for Rosas? Getting in touch with her body through movement. It started with a class in an all women’s exercise studio, which inspired her to design an aerobics program of her own and start Bod Squad, which ultimately led to her co-founding the Nia Technique.
Her early health issues, Rosas said, is “why it became so important for me to design Nia in a fluid, body centered, sensory based, creative way. Why it was so important to me that Nia leave people feeling good about themselves, not only good about their body, but good about who they are, excited about the possibilities available to them. I can feel now, all of my feelings. I can use my mind, my body, my emotions, and most of all, my spirit.”
Maybe there was something better that wouldn’t injure people, Rosas thought. Maybe there was something that would actually give people more than a physical workout. Plus, she says, “I wanted to take off my shoes, so that the movement could be better grounded and the feet could benefit.”
The turning point was a visit to a dojo where Rosas realized that she didn’t really know how to move her body. Co-founding Nia was all about discovering what movement really means – to our bodies, to our minds, and to our spirits.
“Nia is founded in the idea that fitness meant not only physical but emotional and spiritual well-being, and that pleasure and joy rather than pain and guilt produce lasting results, NIA carved new ground in the field of fitness by combining aerobic movements with T’ai Chi and other martial arts, ballet, modern and ethnic dance, and yoga. It’s the antithesis of slaving at the gym.”
Here’s Rosas on being a health advocate.
What’s the best part about leading your community?
Debbie: I think the best part is the opportunity to embody somatic leadership. Everything that I do in Nia is meant to enhance the physical experience. Leading from the head or the emotions is one thing. But leading somatically is a very different experience. I have to perceive body language, what I conceive, thoughts I have, I have to separate my emotions from the people I’m leading. The have the opportunity to work on this in all aspects in my life. To lead the body’s way is the most imp thing. I know how to do that on the dance floor. But to do that in an interview or in front of a camera, I et to apply all my sensations scientist knowledge. My body leads me.
What has been your proudest moment as a Health Activist?
The moment I realized that I was smart that my body was smart, that I could read the body, that I could comprehend sensation in my body, that was a proud moment for my body. I grew up thinking I wasn’t very smart. My spirit had been beaten down so much. I had such a loss of self-esteem and self-respect. I had to reclaim it after I left High School by figuring out how I learned. There was an intelligence no one had taught me to listen to – my body
What has been your most challenging?
Dealing with people’s concrete attitudes and beliefs about the body, about their body, and about the potential of the human body. It takes a lot to move a mountain when people’s attitudes and beliefs are that people can’t heal. Or they practice self- degradation.
It takes a lot to shift that. People dedicated to live in pain instead of choosing pleasure, that’s a big mountain. People conditioned to not express themselves emotionally, that’s a big mountain. Being expressive and having the body heal itself, all of those things are taken away from people depending how we grew up.
We feed the brain information and that’s what the brain relies on. The problem then is that we always respond in the same way. People are afraid of something new and that becomes a poison.
Is there anything you wish the general public knew about your health community?
I wish they knew that we’re not woo woo and we’re not silly and crazy because we want to have a good time and follow pleasure not pain. From the outside something that looks easy just shows the power of the body. I wish people knew how intelligent and deep this work is.
People need tools to deal with stress. The way of the body is how to do that. The way of the body and of the human spirit. Sadly we need disasters to bring that out. We’ve forgotten the goodness. When we say no to pain and yes to pleasure, we find the path of least resistance.
How do you raise awareness?
You need to educate people that the way of the body is to be aware. It’s not about raising awareness as it is about bringing people into the body. Awareness means when you connect people to sensation, when people live in their body as their laboratory, then people are using the gift of the body, the ability to be aware, to notice. We call that body literacy. Read sensations of the body and make healthy choices.
What can others do to get involved?
Go to a Nia class so that you have a sensory experience of what the Nia program is about. Go online and sign up for the newsletter to get access to a class and the workshop every month. Go online and look for any one of the special workshops that provide more than the class. Purchase a DVD to try it out on your own. Search nianow.com and read the personal stories to see how Nia can add meaning and purpose in your life. And if Nia’s not for you, you’ll know and you can seek something else out. Take one minute a day and do a movement.
What’s next for your community?
The expansion of the training staff from 14 to 60 trainers so more people worldwide can offer Nia. The trainings are great not just for teachers but also for people who want to learn about the body.
And in January 2013, we’re launching a new training program called The Body’s Way designed to provide people somatic understanding of their body
In February 2013, we’re launching an hour-long workout called 52 Moves, based on 60 second intervals to improve movement skills and enhance conditioning. It’s perfect for the beginner as well as an accomplished athlete.
What are your goals for your organization and what are you most looking forward to?
The long-term goal is to expand the special application of this work for healing, short and long-term illnesses. Nia will be 30 in 2013. Over the past 30 years we have used this work with children and people with cancer, MD MS, arthritis. Since it’s self directed, it can be applied to almost anything. It creates an improvement in function for almost everything.
What do you do when you’re not advocating?
I explore what it means to live my life in a body as a spiritual, creative being. I really seek to reach a potential that allows me to feel like I am using every single day and moment for evolving myself into the best human bring I can be. I apply all the things I talk about into my life. I’m dealing with something now that could put some in a tailspin, but it gives me a chance to live my faith without worrying about tomorrow.
In this post, Health Activist Jane Waterman chronicles her experiences with the depths of depression and living with invisible illness while pursuing ambitious career dreams. Her struggles are difficult to read but relatable to those who have lived with unresolved symptoms and painful side-effects. Though her journey was not easy, it is a testament to the process of healing and the work that goes into maintaining hope and finding solace. Thanks Jane, for bravely sharing your story with us. –Amanda
My Beautiful Career
By Jane Waterman
[Trigger Warnings: depression, self-injury, suicidal ideation]
I was not yet out of undergraduate school when I was visited by the first of many invisible illnesses. An introverted and isolated girl, I completed my honours degree in Physics in 1988. With a dream of becoming an astrophysicist, a PhD was the next logical step. However, beset by major depression, I knew I wasn’t ready for the challenge. It was time to enter the “real world”.
In 1990, I was training to be a meteorologist, a side-step from my envisioned beautiful career, and newly married to my first boyfriend. At a mid-year celebration, I contracted food poisoning and spent the rest of the year wracked by nausea and abdominal pain. After the requisite diagnostic tests deemed my health “normal”, the GP sent me to the psychiatrist.
I finished the training, but was unable to work due to my physical and mental distress. In 1991, two young men I knew committed suicide within months: one had chronic fatigue syndrome; the other, depression. My decline started in earnest. I began years of drug treatments for depression (my physical maladies were dismissed as something I’d have to learn to live with). In hindsight, the regimens of increasing dosages, switches, and combinations of psychiatric medications led to side effects that exacerbated my illnesses.
Even though I secured a dream job as a support scientist in 1992, I felt broken, and isolated myself from family and friends. Over the next couple of years I survived a drug overdose, had brief hospitalizations and was dismissed for more drug therapy. My new marriage fell apart. I felt consumed by inner rage. Whenever it leaked out I controlled it by directing it at myself. I began to scratch my arm with a blade. I didn’t know what self-harm was. All I knew was the feeling of immediate relief from the pain locked in my brain and body. It was the only way to ease the tempest: ironically, to help me pass as “normal”.
In 1994, an online friend introduced me to cognitive therapy and a good therapist in town. My new psychologist talked to me. He gave me the tools to return from the edge of madness. Through years of intense loneliness, and chronic fatigue from my undiagnosed physical illness, I felt someone believed me enough to want healing for me.
I loved my job in computer modelling, but despite my achievements I was plagued by worthlessness. Lacking self-trust, I checked my work for mistakes repeatedly, likely due to an undiagnosed obsessive-compulsive disorder. In bad flares of brain fog, my self-mistrust grew. The checking became paralyzing. It was difficult to finish things, and I kept checking things that were finished. I started getting passed over for promotions.
Emotionally, I felt raw around people at work – there were few others in my life. Some manipulated and exploited my illnesses. As someone who’d always had trouble expressing emotions, sometimes I’d take unscheduled breaks and go for walks, just to cry where no one could see me.
I spent more time at the local clinic and found a few locums sympathetic to my distress. One offered to write me a note for 2 weeks’ stress leave. Although I never took her up on it (workaholism being an ingrained family trait), I felt such gratitude to have been seen.
In 1997, I developed a relationship with a beautiful soul in Canada. I investigated transplanting my career and was accepted for a PhD in 1999. Through my marriage, I also became a parent to two teen girls. With the love of my new family, I hoped I could navigate graduate school at last.
After changing countries and leaving friends, grad school was exciting and terrifying. In my first semester, a bully on faculty seemed to delight in giving me failing grades, and then after more hours of work, giving me the grades I deserved. Grad school fed into all my fears of imperfection. My compulsive checking worsened, and my supervisor would at turns praise me highly and then question my lack of progress.
After researching my symptoms, I suspected I had lupus and asked to see a rheumatologist. In June 2002, he diagnosed me with Sjogren’s syndrome and started me on Plaquenil. What should have helped me merely led to more side-effects. I became suicidal. The self-harm that had been mostly controlled, re-emerged. I compensated by indulging my OCD tendencies and cleaned our home for hours each day, often at the expense of my school work.
I had a name for my illness, 12 years after it emerged, but after years of trying alternatives to Plaquenil, I found none that were effective or I could tolerate. By 2005, wracked with doubts and exhausted, I left my beautiful career on disability. I knew the stress of applying for disability benefits would finish me.
Over the years, I’ve done a lot of healing work, but skirted the roots of my illnesses. I found an amazing counsellor in 2010, who taught me about metta (loving-kindness), and mindfulness-based techniques. I began to receive the messages my wife had given me for years: that I was lovable and could love myself. It takes time to erase old tapes, but I’m giving myself that time.
Now, in 2012, I’ve begun my next beautiful career: writing and advocacy. Although I still have difficulty facing the world, I’ve found power in words. I now believe it’s not only okay to talk about it, it’s important to let others, including my younger self, know the compassion of sharing: of being heard and believed.
Even with exhaustion and pain, I’m grateful to have times like this when I can sit and share my message. You’ll make it. You’ll find things you are passionate about. You’ll make mistakes. You can forgive yourself and go on. There are beautiful things on the other side, and even if you end up where you didn’t think you’d be, you’re in exactly the right place.
Jane is a blogger, artist and advocate at Blackbird at Night (http://blackbirdatnight.com). Jane grew up in Australia, before joining the love of her life in Canada in 1999. At 46, Jane has lived through and with many challenges including depression, dissociation, Sjogren’s syndrome, endometriosis and PCOS. These challenges have necessitated several reinventions. When not eking out her time and energy as a freelance technical writer, Jane chips away at her dreams of being a “real” writer of novels and inspirational self-help books.
This post explores a taboo subject of death. Through Ms Rants’ calm, thought-out perspective – thinking about death becomes less scary, less forbidden and feels “okay.” As a part of the human experience, death is a constant. In her post we see why discussions of death have a place in our world – not only in our families but in our health communities. We raise awareness, break down barriers, and expose what’s been hidden when it comes to our lives – why not think of death in the same way? Thanks for musing with us, Ms. Rants! –Amanda
Thinking and talking about death
by Ms. Rants
I think about death a lot. Well, maybe not a lot. I don’t know. “A lot” is one of those relative terms, and I have no idea how much anyone else ever thinks about death. It’s not something that’s considered “appropriate” to talk about.
When I was a kid and I’d be bored on my walk home from school, I’d sometimes have daydreams about some guy jumping out from behind a house and coming after me. In each daydream, I’d find some oh-so-clever way of escaping and getting help. In some of them I was also protecting my younger sister. Every time, I succeeded. So thinking about death, for me, is like that – sure it could happen one of these days, but I’m not usually thinking about causing it, just the possible responses to it.
Technically my illnesses are not fatal. My doctor says that they could shave a few years off my lifespan, but looking at my relatives, there’s a fair chance that, even with a shortened lifespan, I should still make it into my 80s, and probably even into my 90s, so that’s never worried me. Still, a few years back I had a rough spell for several months and I could feel the life draining away from me. I didn’t feel like I was dying immediately, but I could feel the years being cut off the end of my life. It was like someone had poked holes in me and my life was draining out, slowly but surely. I don’t know if that’s what was really happening, but that’s how it felt. I thought about death a lot at that point.
Sometimes I think about suicide. I’ve never considered actually committing suicide, but I have wondered what would happen if…. I’ve thought about the least painful way to do it. I’ve thought about who would find me. I’ve thought about the reactions of my family and friends. Considering the reactions of my loved ones has always been enough to make suicide a non-issue for me. I have to admit, though, that if they weren’t around it might be different.
There are times I wish I’d die. This is different from committing suicide because I wouldn’t intentionally take any action. And I suppose that in the long run, I don’t actually want to die. But sometimes, the pain is so intense or the burnout is so difficult that I just don’t feel that I can handle it anymore and death seems like a great way out. Eventually I think about how it would affect other people and I remember why I should live, but there are definitely times when living seems overrated and death seems like a peaceful solution.
Of course, like everyone else (I think), I think about the death of my loved ones. Sometimes I think about someone I love who has passed away, or someone I love who is approaching death. Sometimes I think about what I would do if someone close to me were to die and I can’t even begin to imagine how I would handle it. Sometimes I feel guilty for even thinking about their eventual death, but then I remember that death is natural, it’s a part of life, and there’s nothing wrong with thinking about it, despite society’s taboo. I feel even more guilty when I wish for the death of a loved one who has recently been suffering from a long, painful demise. She has lived a long (she calls 70-somethings “young”) and full life, and she herself has plainly stated that she would like to die now, instead of continuing this horrible decline. So again, I know that I should not feel guilty, and yet I do because I am as much a victim to society’s fear of death as everyone else.
Death is always there, always a possibility, always occurring, but no one talks about it, even when it’s imminent. Yes, it can be scary to confront our own mortality, but that certainly doesn’t help anyone. I didn’t love reviewing my parents’ wills and living wills with them, but if I should need that information one day, I’ll be glad to know what it is and where to find it. And if we knew that one of us was going to die sooner, shouldn’t we address it?
The thing is, we don’t always know when death is imminent. If we as a society can’t discuss death when we know it is approaching, how are we going to talk about it when it feels more abstract? And the answer is, we don’t talk about it. We avoid the conversation at all costs.
Personally, I do not believe in any sort of afterlife, but sometimes I wish that I did. I do not mind that when I die, it’s over, but sometimes I wish that loved ones who I’ve lost weren’t entirely gone. I wish they were looking down on me. There are so many different beliefs when it comes to the afterlife, but that doesn’t change an important fact: at some point, we all cease to live on this earth. Yes, every one of us will die. No exceptions.
So why can’t we talk about death?
Ms. Rants is a single 30-something living near Boston, MA. She enjoys ranting (often) and raving (sometimes) at her blog, Chronic Rants (www.chronicrants.com) She is a daughter, sister, aunt, niece, granddaughter, and friend. She’s had symptoms since a young age, and now 20 years later, she completely has a handle on her health. Some days. Sort of. Mostly. Ok, sometimes.
This post is a difficult one to read. It chronicles an immensely difficult experience to go through and eventually write about. Thank you to Amy K for being so brave as to go there. Even though we know that sharing is the first step toward awareness and feeling less alone – that doesn’t make it any less challenging to do so. But when we can start by saying, “This is real and something that many experience in silence” – we make a difference. Each post like the following is a big step toward breaking that silence. Hearing first-hand accounts is invaluable. If we can begin to do to provide a safe space for people to speak openly about this and similar struggles, perhaps others can begin to seek healing. Thank you again for your courage, honesty, and openness, Amy – this is a beautiful, though heartbreaking, post. –Amanda
Learning to be Okay
by Amy K, Una Vita Bella
[TRIGGER WARNING: suicidal ideation, self-loathing, self-injury.]
Thinking about tough stuff when it comes to living with chronic illness does not produce a lack of ideas. If you are reading this, it’s likely you have had to deal with plenty of really tough circumstances, pain, and heartache. The one thing I know to be true is that all of us share the human experience of tough times. It’s one thing to go through them, but it is another, different thing to talk about them.
So often we want to disguise our pain, disguise our heartache, and just push through it to the other side. All too often we keep things inside, our feelings eating at us like a cancer, buried underneath the smiles we put on for as many people as we can. And most of the time, when we keep our mouths shut, it seems to serve us well (or at least better than the alternative). But in truth, doing that only hurts more people. As humans we need to know the struggles of our peers, our family members and our friends. We need to know so that we can help. And so, I will share with you.
My journey with health issues started at a young age, but it wasn’t until my 30th year that I seemed to reach some kind of pinnacle of pain, both physically and emotionally. I had endured a very difficult pregnancy (my 2nd)… months of nausea, vomiting, insomnia, severe depression and anxiety. My body was overwhelmed by the natural process of pregnancy; it was too much. Months after the birth of my second child I discovered I had developed the pain syndrome known as Fibromyalgia and my mental health declined rapidly. Having faced depression before, I should have known what I was at risk for. But I had not faced months of pain and illness previously. I was not prepared for that! The days and weeks turned into months without relief and, before I knew it, I lost all hope and zest for life. Life felt a burden. I felt as if I were a burden to everyone- a tell-tale sign that depression was getting the best of me. The downward spiral had already begun and my descent was rapid.
I was a young mother with two beautiful children, a nice home in suburbia, and great neighbors to boot- what could be so wrong? It was that thing called pain and illness and I waved my white flag as I surrendered in the sickest way, by attempting to take my own life. What ensued thereafter is the really tough part though. Because the easy part of this story is to tell you what I already have. The easy part is sharing how I got there and why my mental health went south. In fact, I share this part of the story often because I want people to be aware that suicide and suicide attempts are a real concern for people living with chronic pain and illness. What I don’t share is the struggle that I faced in order to come back from that, the messy parts, and the toughest parts to accept. This part of the story is one that I have not told before.
Things got worse before they got better. After my suicide attempt in August of 2006, I was bathing myself in shame and guilt for what I had done and for not being strong enough to get past the pain. I sat in hate and self-loathing. Also, I felt weak and small for being in this place. Weak, for being hospitalized for psychiatric treatment. Weak, for exposing my children to such pain. All of the feelings turned inward and I had nothing to do with them… Despite the work I was doing to process what had happened and the therapy I was going through, I found myself in a place that felt scarier to me than the hospital. I began to self-harm.
This is the toughest of all topics for me.
I believe I have only written about this once before, for this is the topic that carries the most shame and embarrassment with it. I don’t understand it completely. I find myself confounded when I try to explain how it happened, how it started. All I know is that for some reason hurting myself took me away from the other pain I was experiencing.
To tell you that I burned myself and cut myself with a razor blade and broken pieces of glass, is the most hideous of things for me to say. And yet, it is true. I hid in the bathroom at the hospital and at home. I snuck away at night or during times of intense stress and hurt myself. It was scary. To admit that I was capable of doing that is too much for me to stomach now, 6 years later. Somehow my pain and illness, along with previous trauma, led me to a place where that was my reality. And it wasn’t until I came to a realization that I could not harm myself any longer that the road to healing really began.
It was a slow process that began with a moment of great fear about what I had done to myself and a decision that I must stop. I realized I had to find ways to distract myself and I had to find ways to love myself again. While I was able to stop self-harming, it was an even longer process to stop self-loathing. It took months and years of practicing self-love and learning to be okay with who I am -even with mental health issues and fibromyalgia. Self-acceptance, even in spite of my body’s failures and my mind’s failures was the key. Now, I don’t so much see them as failures, but more as idiosyncrasies that make me unique. (Okay, sometimes I still see them as failures, but not most of the time!)
I want the world to know that self-harm is real. Awful, yes, but very real. It is not just a cry for attention, although attention is certainly needed. I want you to know this behavior can be found in adults, although it is most typical to occur with teenagers. I want people to be able to discuss this topic without immediately assuming that the person exhibiting this behavior has lost all control of their mental cognizance. My desire is for the world to see this behavior as another sign of pain, not illness. If you know someone who self-harms, self-harm yourself, or just want to learn more, there are resources available at 1.800.DONTCUT(366.8288) and at www.selfinjury.com.
Amy K is a Health Activist in the Mental Health and Chronic Pain communities – she has won numerous awards for Best Depression Blog and is the creator of the #MHSM (Mental Health Social Media) chat on Twitter. You can follow her work on her blog Una Vita Bella and on Twitter @abeeliever.
This is a wonderful post that speaks to an experience many of us go through — facing the decision to double-down and push through … or give up on a dream. When faced with a life-altering situation such as the diagnosis (and symptoms) of a chronic health condition – everything is effected. The path you thought you were on becomes a new journey with more uncertainty than ever before. Then there is mourning – the loss of your dreams, of the self you’ve come to know, of the life you’ve led. Sometimes this calls for some serious soul-searching. But then – new things can arise. You can find new strength within and new plans can manifest and there is space for new dreams. This guest post is by Lauren Erbach – a lovely Health Activist in the IBD community – who shares her story about her dream to complete a triathlon and her eventual decision to do what was best for herself and her body. She also shares tips for others of us wondering if a decision we’re making is the right one. Thanks for sharing with us, Lauren – and encouraging hope and self-reliance through the retelling of your own quest to do what was right for you. –Amanda
Giving Up On Dreams, Finding New Inspiration
by Lauren Erbach
I became a runner almost immediately after being diagnosed with Inflammatory Bowel Disease. For some reason, despite the blood loss, the anemia, emaciated body and new diagnosis, my disease didn’t strike me as serious at first. It was no different than chicken pox or strep throat. Okay, sure, I’ll take my medication and feel better. The thought that I couldn’t do something because of my disease simply didn’t occur to me, and I’m grateful for that naiveté. Not knowing just how bad it could get, or how much it could impact my running journey gave me the courage to start.
It started with a 5k. Then an 8k. A few half marathons. Several marathons. Before I knew it, I was deeply engrossed in the running community and surrounded by a group of incredibly athletic friends. They’re the kind of people who think training for an Ironman (a 2.4 mile swim followed by a 112 mile bike ride and a 26.2 mile run) is a lot of fun. The more I became one of them, the more just running marathons seemed insignificant. I decided I wanted the challenge of triathlon, but swore up and down I would only do a short distance race.
And then somehow, I found myself training for a half Ironman triathlon. Compared to my friends’ endeavors, this was a much smaller task: a 1.2 mile swim, 56 mile bike ride, and 13.1 mile run. It seemed like a big deal and a small feat at the same time. (I blame being surrounded by crazy athletic people.)
I selected a race. I forked over a whole bunch of money and signed up. Eight months before the race, I started training. I swam and biked and ran my little heart out. There were weeks where I was training over fourteen hours, waking up early to get in a workout before work, and bringing a bag with me so I could hit the gym again on the way home.
It was a lot, even for someone with a properly functioning immune system. It was too much for me.
A month before the big day, I was in my doctor’s office dealing with the biggest flare-up I have had since my diagnosis. It was time to go back on steroids. And despite my doctor’s reassurance that, “We can get you through this race if you really want it, Lauren.” I knew it was probably time to call it a day.
It was incredibly difficult, because there wasn’t one person who could understand it all. My doctor understood my medical condition and how to get my body back to normal. I don’t believe that he quite understood the stress that training for and racing 70.3 miles was putting on my body. My coach understood the demands of training and racing, but she did not understand my Crohn’s disease. So when it came down to it, I could ask lots of questions. I could consult with people I trusted. But I had to make the decision for myself.
I chose to quit.
It took months before I was comfortable saying that I quit. “I had to stop training,” was how I preferred to put it at the beginning.
But I did quit. I still believe it was the right thing to do. There are times in life where you feel like you are pushed to the max, but you’re not. Those are the times that you need to keep pushing. They’re the times that show you the incredible things that you’re capable of doing, if you put your mind to it.
There are also times where you need to be okay with stopping. I don’t know what would have happened if I pushed on and chose to race. Maybe I would have crossed the finish line with a smile on my face. Maybe I would have pushed myself too far past my limits in the remainder of my training and ended up in the hospital. I will never know. What I do know is that I gathered all the facts I could and made the best decision I could with the information I had.
I wish I could say that I made the decision calmly, with the clarity that I am now able to write about it. In reality, it was made over countless nights of agonizing, crying, and wondering why my body was attacking itself, when I just needed one more month of strength to get to the finish line. This was the first time my disease had stood in the way of a big goal, and I was a jumbled mess of anger, confusion, and sadness.
I am now more grateful for that experience with my disease than I am for any other. Suffering a loss like that due to my disease gave me the courage to start talking about it. What was a running and triathlon training journal turned into the blog of an athlete living with an autoimmune disease. I started wearing my “Ask Me About My Crohn’s disease” shirt everywhere. I began training with, and eventually working for, Team Challenge for Crohn’s & Colitis.
This setback turned activism into a part of my daily life. I even chronicled my decision to quit on my blog, in the hopes that others facing something similar could find comfort if they needed it.
So what should you do if you find yourself in a similar situation? Take your time. Allow yourself to feel sad, angry, frustrated, relieved – no emotion is bad – all are worth processing and acknowledging. Then, listen to your gut. Deep down, I knew it was time to allow my body to rest, but I wavered because of my pride. I worried about what other people would think, and I worried about letting myself down. It was a huge sense of relief when I finally gave in and did what I knew was right.
Best of all, it led me down an amazing path of self-discovery and activism, right to a dream job that I never knew I was dreaming about. You never know what lies ahead.
Lauren Erbach, 27, writes about her life as an endurance athlete with Crohn’s disease on her blog, Forward is a Pace. You can also find her on Facebook and Twitter. This post is based on one that originally appeared on Girls With Guts.
Today we have Guest Post on Stoptober and the challenge of quitting smoking — and how to approach it from the perspective of a loved one who wants to encourage someone in their life to quit. These are difficult conversations to have – but below are really great tips for starting the discussion and how you can help someone stop potentially destructive behavior. This isn’t a subject we’ve covered before so this is a great opportunity to learn more. It fits in really well with Tough Stuff Month. Thanks to James at Dr Ed for reaching out and sharing this post and infographic with our audience! –Amanda
Stoptober: Are you Tough Enough?
On 1st October, the UK government launched the first ever ‘mass quit’ smoking campaign. ‘Stoptober’ urges smokers to quit for the month of October, with the support of friends and family.
Our friends at WEGO Health thought Stoptober would be a great fit with Tough Stuff Month. So if you want to help a loved one to quit (or break any fear, addiction, or bad habit), here are our top tips on starting a difficult conversation, plus ways you can support a quitter, and a handy infographic on the latest smoking cessation treatments.
How to start a difficult conversation…
1. Don’t ambush, pick your moment
You need to pick the right time to broach this subject; it isn’t the sort of conversation to have when waiting for the bus, or on a night out with friends. Instead, choose a quiet time when you’re both relaxed. Try starting the conversation when you’re out walking together. You don’t have to maintain eye contact when walking, so it’s easier to get out all of the difficult things you need to say, but you can still hold hands – and provide that reassuring hand squeeze if and when they need it.
2. Don’t rehearse (too much!)
When building up to an important conversation, it’s so tempting to prepare and practice exactly what to say; but conversations never play out the way you planned them. You don’t want to nag or lecture and risk having your loved one clam up on you. You want to gain an understanding about how they feel about their smoking. So just say your bit and let them speak. Once you have this insight you can work out where to go from there, together.
3. Think about what they want
You know your loved one better than anyone. Are they stubborn? Do they react well to criticism? Or are they likely to feel attacked and become defensive? They may need time to reflect alone and in private so perhaps a written letter would work better? At least this way, you can get out exactly what you want to say without having them cut you off, or shut you down or letting your nerves get the better of you. They’re then free to talk to you when they’re ready. If not, just follow up with a simple ‘did you get my letter, what did you think?’
Now that you’re in it together, you need well informed advice about everything you can do to keep them resisting. Here are our top 10 tips:
- Keep them motivated: Many smokers say they would like to stop but don’t really want to. Make sure they are clear why they want to give up. It may be to save money, to improve health, or to protect their family. Really wanting to give up is the best way to quit
- Provide emotional support: They need people around them that will support them. As many people as possible! Get your partner to tell people that they are quitting. It could be the difference between stopping and starting again.
- Avoid ‘cold turkey’: As you can see from the infographic below, quitting cold turkey is the least effective way of quitting
- Use nicotine replacements or other medication: Every smoker is different, but cutting out nicotine completely is hard, so consider using some kind of nicotine replacement.
- Use cigarette shaped substitutes: Smoking is a physical and a psychological addiction. The feel of a cigarette in their hands may be as important as the nicotine itself. Try out plastic cigarettes, or e-cigarettes perhaps
- Use relaxation techniques: When cravings strike, suggest using relaxation exercises to help overcome the negative feelings. At the very least take deep breaths.
- Treat them: One of the immediate benefits of stopping smoking will be the amount of money saved. Make sure they spoil themselves with the money they’ve saved.
- Focus on the positive: Giving up smoking is one of the hardest things that anyone can do. Get your partner to write down lists of all the positive things that will be gained by stopping smoking. Constantly remind them of how many advantages there are to quitting
- Know the triggers for smoking: Know the situations when your partner smokes (e.g. after a meal) and help them to break the cycle.
- Fill the void: One of the most difficult things with cigarette craving and withdrawal symptoms strike is not having an activity to fill the void. Try chewing gum, eating something healthy, or calling a friend.
The best smoking cessation treatments [Infographic]…
Quitting smoking is tough, but if it’s tough stuff they’re made of, they’ll get there eventually – and you need to make sure that you’re there for them until they do!
Good luck! DrEd – Your Online Doctor
These Things Happen
At 2:00 AM this morning I awakened to the text alert on my phone simply BLOWING UP! Earlier in the evening, I’d fallen asleep on the couch while watching TV with the offspring. I rolled out of my nest trying to remember where I’d left the phone so I could shut the stupid thing off. Then I saw the message.
Lexie (AKA @OneBloggerGirl), a woman I had met through Twitter and the shared hashtag #scleroderma, passed away on August 7th. She was 29 years old.
I was speechless. Stunned. Numb.
Then the text from Karen (@KarenOVasquez), a mutual friend, arrived telling me to NOT get on-line until I had called her, but it was too late. I already knew.
At 2:20 I put the coffee on and turned on the computer. By then Karen had already posted a short tribute, “A Tremor InThe Force.” I read it while the coffee was brewing. I followed the embedded link to Lexie’s blog, A Girl at a Crossroad. I re-read her “About Me” section and the posts. There were, after all, only four.
“Hello World!” May 12, 2012: “…One of my missions in life is to rid myself of such negative energy. It’s draining! Life is supposed to be joyous… a celebration even in times of misery and hardship! I want to make an impression, even if it is a small one…”
Then I grabbed a cup and called Karen. The first few minutes of the call were filled with awkward silence while both of us fumbled for the language to express something…anything…we were feeling. After a few false starts, she simply stated, “I’m angry!”
I answered, “It’s not fair!”
Slowly at first, we began putting together the pieces of the woman we knew. She was diagnoses in 2011 with Scleroderma and MCTD (Mixed Connective Tissue Disorder). Thanks to the wonders of her misdirected immune system she had pulmonary hypertension and pulmonary fibrosis, leaving her needing oxygen 24/7 and a double lung transplant.
Living In Fear…Praying For Strength May 15, 2012: “…It feels so good to be honest and to just let it be known that I am tired. Even though I’m tired, THERE IS NO WAY I AM EVER GOING TO GIVE UP! I have too much to live for. I’m not a girl who has had a lot of luck in life, but I am fortunate in many ways and I am truly blessed. I know who my friends are as well as what it means to be a friend… I have loving family members who extend the support and cheer me up when I need to smile… I am loved…”
Sometimes, our bodies just have no sense of humor. But Lexie did. She worked hard to find the humor (even if we sometimes did get a little dark) in whatever situation she was in. She was a self-proclaimed Nerd and her blog bio talked of her love of animals and horseback riding.
The last time we heard from her was August 4th, three days before she slipped away from us. She was cracking jokes about her Doc’s pants and the fact that she’d been in The Fortress of Solitude (our term for the Hospital) for over a month. Her Doc was telling her she might get to go home on the 10th or 13th. But she also said that there was no laughter in his eyes that day, only concern.
Her final Tweet to us was, “LOL! Thanks! The love keeps me strong!”
Karen and I talked for over two hours, trying to make sense out of the senseless, alternating between laughing and silent tears. Together, we tried to picture what she must have looked like. You see, Lexie never bothered to post a profile picture anywhere that we could find. The gold Twitter egg was the only visual we had to go with the woman. The, “…bitch with a heart of gold! In need of a double lung transplant…” as her Twitter bio proclaims.
“Due at The Fortress Of Solitude” May 25, 2012: “…I love the people in my life, and I know they love me wholeheartedly AND unconditionally! This is a journey I’m not meant to take alone, and it’s a journey that is by no means simple or easy. It’s going to be a tough climb, but I’m glad to do it. Now… ON TO THE FORTRESS OF SOLITUDE! Wish me well, you guys!…”
We also discussed the joys as well as the pain of being active in the Chronic Illness Community. It used to be when a friend went MIA for a week or two; you figured it was vacation, busy with kids, school, work, and life in general. In this alternate world, you wait and worry. There are “other” things that could bring about their prolonged silence. Then worry gives way to fear…Then at 2:00 AM the phone begins its Banshee’s keen.
We’ve all heard the fumbled words meant to soothe an aching soul, “Life is so short,” “Taken too soon,” and “These things happen.” And sometimes, they do. Even when it’s not fair.
Since I hung up the phone at 4:30, I’ve read her blog several times, trying to find some clue, some word of comfort. Some connection my brain could grab ahold of to make this come into focus. I have found repeated smiles at her spirit. I have found comfort in her strength and the way she chose to face her life.
A Recap of the Adventures at the Fortress June 26, 2012: “…so how do I alleviate the situation? Jokes! A sense of humor makes any situation comfortable…”
But there are no answers. Maybe someday with all the on-going research into auto immune diseases. Maybe someday in the future, but August 7th is done and gone. For Lexie and too damn many others there will be no answers.
As I went over her “About Me” again, one line jumped out at me and brought the tears back. But as I read it over and over and over, a smile started small and then burst across my face, kinda like the Sun shining during a storm. I’ll end with that quote and the knowledge that she gets her wish. Her voice will always be around to remind us all that life is indeed precious and all too short. And sometimes these things do happen. Rest well, my friend!
“…Blogging is a great way for your voice to be heard without it being meaningless. I get to share my adventures with the world, important information about serious issues, and should anything happen… at least my voice is around to not only bring some awareness, but I get to share my opinion on a lot of things… I promise you all, we’re going to have a blogging-good time…”
* Lexie’s best friend Claire, the amazingly kind woman who let us know of her passing, was wonderfully kind enough to send us a picture of Lexie. Her smile and beauty are everything I pictured them to be. Thank you for this wonderful gift!
Today, we start off our Tough Stuff Month Guest Posts with a really powerful post. Written by Mental Illness Health Activist and writer, Stephanie Schroeder – this post offers a glimpse into her advocacy and includes an excerpt from her memoir. The book, Beautiful Wreck: Sex, Lies & Suicide delves into incredibly intense, personal topics – many of which exist curtained by silence. Through her book and her advocacy, Stephanie brings these issues to light, demystifying them through her honesty. As she shares on her site, Stephanie is no stranger to the difficulties that many patients face as they experience symptoms, diagnosis, and the never-easy journey toward self-care and empowerment.
By opening up her life to the community – and now, us – Stephanie raises awareness in such a real way. I’m honored she’s sharing her work with us. I hope that her story and the bravery it took to live it, process it, write it, and share it – will inspire you as much as it has inspired us. Enjoy the chapter excerpt – it’s captivating! Thanks for sharing, Stephanie. –Amanda
On “Beautiful Wreck: Sex, Lies & Suicide”
by Stephanie Schroeder
Beautiful Wreck: Sex, Lies & Suicide is ultimately a tale of triumph: over intimate partner violence, suicidal depression, bad relationships, worse decisions, uncontrollable mania, and a generally unhealthy life. The book is a memoir about my struggle with bipolar disorder — at first undiagnosed, and then trying to make sense of life after my diagnosis, make peace within myself and piece my life back together after it became seriously unhinged. The book spans only about 15 years of my life. From approximately age 28 to 42, I was “not me” and, in the beginning, I didn’t know why. It all became much clearer the day I was diagnosed with Bipolar I. However, my life only became more complicated by that diagnosis.
The following passage, early in Beautiful Wreck, details events from 1997. It’s a span of time I’d rather forget because it began my serial suicide attempting that ended only in 2005. This part of my book will give you a flavor of my extremely severe depression and how trapped I was in a dysfunctional, violent relationship, the first of many, because of my mental illness.
I’m obviously alive to have published the book, but it was a long road from being abused by my partner and deciding to commit suicide to where I am today: healthy, happy, writing and publishing.
Excerpt from Beautiful Wreck
As Lauren and I grew further apart, I started sleeping on the couch, leaving the radio on all night (breaking another of her rules). By then I had changed careers, moving to a corporate communications job on Madison Avenue with an even higher salary and an even more impressive title. Although I had no knowledge of PR when I was hired, the president told me I’d have plenty of time to find my sea legs. I dived in, working journalists just the way PR flacks had worked me when I was a reporter and editor.
I was a functioning depressive. A master at masking my illness, I managed to get to work and perform well during the day. But, when I got home I was in such pain, both mentally and physically, that all I wanted to do was lie down and blot out all other people as well as my own thoughts. Even taking the time I needed to deal with my own depression seemed impossibly hard.
Depressive illness robs its sufferers of enormous amounts of time and energy. As a disease it’s both active and parasitic, draining both mind and body. Depression is psychically painful, with thoughts of death and dying, and often leads to sufferers contemplating suicide just to end their pain…
[Continue reading chapter →]
Today we have an inspiration post written by Health Activist for the Autoimmune community and blogger at The Mighty Turtle, Karen Vasquez. Thanks for sharing what inspires you, Karen – I bet lots of Health Activists can relate to your story. Be sure to follow Karen on Facebook and on Twitter @turtlemighty!
What Inspires Me
By Karen Vasquez
I started blogging in 2009 about no specific topic. In fact, I even ranted about living with a fictional character, who drank all my beer that I really didn’t drink because of the medications I still take. I had no direction: I just wanted to write.
I became curious about my health, because things go in with it even I have a hard time believing actually happened. After searching for information about my diagnoses, I realized there were few blogs about patients living and adapting to life with scleroderma and/or sarcoidosis. I realized I had a few things to share. I knew it was rare to have scleroderma and sarcoidosis together, but I learned it was not unusual to have more than one autoimmune disease.
Then one day, I found Twitter and I realized I had many symptoms in common with other patients with different diagnoses. The similarities were overwhelming to me; adapting to changes; parenting with disabilities or physical restrictions; overlapping symptoms, masking symptoms of other diseases and slowing diagnosis and treatment; the short version, we all had a lot going on and we had a lot to learn from one another.
Well, I had a lot of wild, wild world of medical stories; but talking about my own experiences, though funny when I can possibly make it that way, can be somewhat soul sucking. I go through periods of writing and taking a break. My breaks started becoming longer. Not realizing it, my breaks became longer because I had slowed down interacting with people on line and in person.
I can’t tell you a single definition of what inspires me, so I will provide an example: Last week, a scleroderma patient mentioned she had pain in her wrist. While replying to her, I remembered an incident where I had pain in so many different places, I forgot about telling a doctor about a problem I was having while leaving the parking lot. Next thing I knew, a quick check of Twitter had turned into my writing of a post at nine o’clock at night. It felt good to write.
I think my inspiration is entirely selfish. I am inspired to write by people I interact with; patients or not. With one statement, question or even just a word, a patient can send my brain on a trip. My destination: some crazy rant and a decent post about adapting to what life hands me, leaving me feeling good; that I am making a difference and I am not my diagnoses. And somehow, that makes me a health activist. Yes, doing what I love makes me an activist and that makes me feel even better. I would also be remiss if I did not mention the friend who told me, “You should post something for WEGO Health’s topic this month.” Thanks Chris. Thanks for sending my brain on a journey today.