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Posts from the ‘Guest Diabetes Blogger’ Category

Why We Revolt: An Interview with Dr. Victor Montori

The founder of the Patient Revolution is Dr. Victor Montori, a leader in the Knowledge and Evaluation Research Unit at Mayo Clinic and an endocrinologist at Mayo. Dr. Montori is interested in how knowledge is produced, disseminated and taken up in practice — and how this leads to optimal health care delivery and patient outcomes.  His book, Why We Revolt, has just been published, and he’s here today to talk about the how, why, and necessity of a patient revolution.

Disclosure:  For the last few months, I’ve been proudly involved as a board member for The Patient Revolution and have contributed to some of their editorial endeavors, so I’m invested in this organization.  But not just because it’s something to do.  I’m invested, invigorated, and inspired by The Patient Revolution because the people involved are making a difference now instead of kicking the can of careful and kind care down the road.

Kerri: Victor, last time we spoke here on SixUntilMe, we talked about the evolution towards a patient revolution. Well now the Revolution has arrived. Can you tell me a little bit about the inception of the Patient Revolution?

VM: The Patient Revolution is the coincidence of two lines of thinking and doing. On the one hand, the Warburton Family Foundation whose focus is to promote better care through better patient participation in care and the KER Unit, a Mayo Clinic research group that has been working for more than a decade in advancing the science of patient-centered care. As the ideas came together, it became evident that a new nonprofit, The Patient Revolution, was necessary to advance this mission. We advocate for nonviolent action, one focused on conversations at the clinical, regional and national level to turn away from industrial healthcare and toward careful and kind care for all.

Kerri: And in the last few weeks, you’ve released your book, Why We Revolt. Why do we revolt, and what is the book about?

VM: I had to write this book now. I believe that our healthcare system has corrupted its fundamental mission and has stopped caring. This book argues that greed is a basic reason for why people sometimes get care by accident, other times the are treated with unintentional cruelty, this because of care for people like you, not care for you, you being missed. We need to turn away from such industrial healthcare and toward care that is timeless and elegant, that notices each person in high definition and treats them as one of our own by clinicians working in a system based on love and solidarity. This is why we revolt. This turning away cannot result from a bunch of incremental reforms; it needs a revolution.

Kerri: What was the writing process like?

VM: Each chapter has its own pain, its own pleasure, its own reason for being. My biggest fear in writing this book is that its content would be ridiculous, and among the chapters the two most at-risk are Love and Timelessness. To speak of love in healthcare seems so removed from the day-to-day experience of industrial healthcare and the technical orientation of much of its workforce, everyone more or less convinced that they show up to work to do a job. Yet, we must reclaim love between fellow humans as a fundamental part of the reason and the way we care for and about each other. Time stands in the way of almost any good idea about care. Lack of time is often cited as a barrier. Yet, I don’t know why we cannot imagine care that is timeless, not that each visit would have infinite duration, but where there is enough time for it to grow thick, to fly because it does not move, because we are caring or being cared.

Kerri: What section or chapter are you most proud of … or perhaps most terrified of?

VM: I am getting notes from patients, stories they want to share in which they use the words of the book. This is how i want people to feel – ready to share their stories, with stories and conversations the nonviolent tactics of this revolution. Some have re-experienced pain as the book reflected their experiences of “care” and that has given me pain. But others who I have never met have felt heard, seen. From their notes I also have learned that people have found common ground with the values and feelings I disclose in these pages. It is as if readers are forming a community with this writer and with each other. Well, this are the seminal moments of what I would hope will be an unstoppable movement for careful and kind care for all. Each of these responses have made me feel enormous gratitude, moved by their love, and overwhelming responsibility to take this further until we can surprise ourselves with our success.

Kerri: Who should be reading Why We Revolt? And why?

VM: I dedicated the book to my sons, and they are teenagers. My hope is that by the time we are finished they can take patient care for granted, and regard industrial healthcare as an aberration, a historical accident of greed. I think clinicians and patients, caregivers and policymakers, citizens and managers, but mostly young people, not yet bit by the cynicism virus, and dedicated to work for a better world, perhaps students of the helping professions. I hope this book will give them a vocabulary for the fight, and elicit the stories that make all the difference.

Thank you, Dr. Montori, for helping pave the way for conversations about careful and kind care.  For more about the Patient Revolution, visit their website.  For more about Victor’s book, you can get an overview here and buy your own copy on Amazon.  

And if you’d like to share your healthcare experience, or your perspectives as a patient or clinician, visit the Patient Revolution website and get involved.  

Guest Post: Until Next Time, FFL.

Leigh Fickling was at the Friends for Life event this past weekend in Falls Church, VA and this morning, she posted about the power of FFL and of the green or orange bracelets given out to attendees on her Facebook page.  I asked if I could share her post on SUM, and she was kind enough to say yes.

Take it away, Leigh!

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The armband.

I remember laying in the hospital bed with Ava almost five years ago and looking at her little arm. She was three. Her arm and wrist were full of IVs and she had on a little tiny hospital arm band. The nurses scanned that band every time they came into the room. Blood sugar checks. Scan. Insulin shots. Scan. Vitals checks. Scan. It was an armband that broke my heart. I couldn’t believe that she had been diagnosed with diabetes and couldn’t imagine how we we ever go on. I laid in that hospital bed and held her hand and never felt more alone in my life. I was suddenly in a place that was unfamiliar and I was afraid. I took a picture of our hands and have that picture burned in my memory still to this day.

I remember moving over to the big blue mom chair in our hospital room and turning to Dr. Google. I didn’t know anything about diabetes but I knew the Google would know plenty. One of the first links that appeared in my search was for Children with Diabetes. Sounded like a good hit, right? I now have a child with diabetes. I followed the link and went to the webpage and found the information that I needed. Forums. I had no idea that the Facebook groups even existed yet but found people just like me in the CWD forums. Newly diagnosed. More seasoned parents. Providers. Peers. Support. I spent hours that first night reading as many posts as I could possible read. Learning. Writing down questions. Looking at my tiny daughter and her armband. Wishing that it would all just go away.

It didn’t. And, it might not ever.

Flash forward almost five years to Friday. It was time for another armband. This time I ran to the people giving out the armbands. I couldn’t wait for the registration table to open so that I could grab my bands and put them on our wrists.

This time, the arm band gave me hope. It made me smile. It made me laugh. And, cry. Instead of being isolated in a hospital room and feeling alone, I was with several hundred other arm bands. Parents just like me. Kids just like Ava. First timers. Old timers. Grandparents. Babies. The circle of diabetes life and we were right in the middle of it bound together by green and orange armbands.

Third grade is hard. Work is hard. Life can be hard. We don’t give up but we do occasionally get down. Who wouldn’t?

I think that I underestimated the power and magic of the orange and green band. The healing power. The friendship and companionship. Speakers at the top of the field giving hope about the future and tips to make it through until we get there. Kids that have screamed and squealed and run through a convention hall with absolute delight. Hair that smells like chlorine. Lips stained with sugar free fruit punch. Hugs and hand holds and elbow bumps. Lunches with moms just like me. Alarms ringing and one hundred people clutching their bags ready to offer glucose. Personal stories that ring true with everyone. Amazing session. Supporting vendors and exhibitors. So much food complete with little accurate green carb counts.

I think that my pancreas battery was running low.

Thank you Jeff Hitchcock and Laura Billetdeaux for helping me to recharge. This weekend. These Friends for Life. This is what diabetes is all about. Thank you and the entire team for giving us armbands that mean so much at times when we need it more than ever.

As we drive back home today, our armbands are still bright and intact. As the days fade, they will lose their bright colors but will still be a reminder that we are not alone. We are in this together. In a circle.

Until next time, FFL.

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Leigh lives in Durham, NC and is mom to 8 year old twins, Ava and Davis. Ava was diagnosed with type 1 diabetes when she was three years old. Leigh’s day job is the Director is the Disability Management System at Duke University and Health System, and her other job is to be Ava’s pancreas.

Until next time indeed, Leigh.  Thanks for letting me share your perspectives, and for everything you do for the diabetes community.

Guest Post: Until Childhood Cancer is Extinct

Kate Olivia Rhoades was a sweet and clever little bird who I never had the honor of meeting but we loved regardless of distance.  She was diagnosed with leukemia when she was 26 months old.  And when Kate died, we mourned for the little girl whose smiled cracked the world right open.  Since Kate’s death, I’ve watched my friend Lindsay advocate through the pain of losing her child, determined to make a difference for kids diagnosed with cancer.  Today, Kate’s beautiful mom is visiting SixUntilMe to share the story of Kate, her cause, and how we can step outside of our diabetes bubble for a few minutes to make a difference in other places.

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I am so grateful to my friend Kerri for inviting me to share my story on Six Until Me. While not my first guest post here, it has been quite a while and quite a lot has changed for me since I last wrote.

Like Kerri and like many of you, I myself am a type 1 diabetic and I blogged several years ago about the struggles and joys of achieving “optimal pregnancy wellness” to carry a baby safely and to term while dealing with the pesky and high-risk nature of a diabetic pregnancy. I’m proud to say I (ok, WE) were successful and a safe baby was had.

But. My story doesn’t end there and diabetes is not the only disease that would invade my home or my family. Because after having that healthy, perfect baby (girl!) just about six years ago, cancer came calling. Childhood cancer, to be exact. Like a thief in the night, childhood cancer invaded our worlds by taking over the body of my 26 month old precious Kate Olivia.

When Kate was diagnosed with leukemia in 2013, my eyes were opened to the harsh realities of pediatric cancer, the severe lack of government funding and the overwhelming mis-informed public. Childhood cancer is NOT rare and our children were being diagnosed and dying at an overwhelmingly alarming rate. Nor is childhood cancer cute bald kids celebrating at Disney World with celebrities like Jennifer Aniston and Drew Barrymore cheering them on from the sidelines. No. Childhood cancer was nothing at all like it was pictured in the St. Jude’s commercials or the Light the Night ads. Childhood cancer was my two year old learning how to say “chemo” properly instead of “juice box.” Childhood cancer was my baby vomiting from the toxic poisons we pumped in her blood to save her before she’d even gotten her first cold. Childhood cancer was fever-watches, missed play dates, canceled holidays, fear, more sedations in her two years of treatment than most people will get in a lifetime and WEEKLY chemo for two years.

And then … once again like a thief in the night, cancer came calling again when my daughter DIED from a relapse of her cancer four months after completing treatment and just 15 hours after we learned it was back. My eyes were opened once more … this time to a purpose and a calling that we, her family must fulfill.

Kerri asked me here today to share my story and to raise awareness about childhood cancer … and to represent our smart, clever, funny, beautiful and forever four year old Kate Olivia Rhoades, our sweet girl who had a highly treatable type of cancer yet died anyway. I am writing to you all today to represent the countless number of her friends currently in treatment and who have also died because our government, our society, and our leaders don’t find them worthy of better, less toxic treatments. I “go gold” and raise awareness in the month of September, officially recognized as Childhood Cancer Awareness Month, to represent the countless children worldwide, but right here in our very own back yard, who are dealing with adult strength chemotherapy, life-threatening side effects that can last decades after treatment is done and the toll it takes on their precious young lives and futures.

Childhood cancer is NOT rare and it’s NOT fair. It is the number one disease killer among children and one in five children diagnosed will not survive. And mostly…I am writing today to plead with you to learn more about the countless types and varieties of cancer that make up childhood cancer and learn more about itswoefully underfunded past. And then? Get involved … help us raise awareness. Help us make noise so that we can be that change we wish to see in this world to re-direct its future.

Because our children deserve our best, not our leftovers.

Until Childhood Cancer is Extinct.

  *   *   *

Kate’s Cause lives here.  And Kate lives forever in the hearts of those who love her.  September is over but the need to raise awareness and change the future for kids with cancer is a life-long pursuit.

Guest Post: Giving Birth to Violet as a Woman with Type 1 Diabetes (Part 2)

Today is part two of Ginger’s guest blog about the birth of her second little bird (part 1 is here). While this post takes a bit of a dangerous turn, things did work out okay!  (And if you’re a woman with type 1 diabetes who has had babies, is curious about having babies, or wants to read about other people and their babies, check out Ginger’s latest book, Pregnancy with Type 1 Diabetes!)

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[Note from Kerri:  This story picks up where yesterday left off, with Ginger just home from the hospital with her newborn.]

… but then…when Violet was 6 days old, I woke up from an afternoon nap to a huge gush of blood rushing from my body and onto my brand new iKea striped duvet cover. (It was only $30 but I adore this duvet!)

“Roger!” I hollered to my husband, “I’m bleeding, we gotta get this duvet in the wash ASAP so it doesn’t stain!”

While he took the precious duvet to the laundry room, I went to the bathroom to clean up the blood only to find that I was still bleeding. Seriously bleeding.

I couldn’t move off the toilet without blood pour out of me and onto the floor. Meanwhile my husband was on the other side of the house with the assumption that the gush of blood was a one-time thing and very busy trying to save my precious iKea bedding.

I jumped into the shower thinking maybe I just needed to wash off thoroughly and let the blood finish…but the blood didn’t stop. It continued to pour from me.

“ROGER!!!”

It didn’t take long to realize this wasn’t going to resolve itself at home. Fortunately, our teenage babysitter Mikayla was home and came over within minutes of calling to stay with Lucy.

After filling my sweatpants with wads of paper-towel to contain the bleeding, Roger, Violet and I rushed to the Emergency room that was just 10 miles away at a smaller nearby hospital than where Violet was born.

Between home and this hospital just minutes away, the blood had fill my pants.

I was able to get a good meal of breastmilk into Violet’s belly before I was given anesthesia and taken to the operating room to see what was causing the bleeding. I didn’t know whether I was going to wake up from this operation having had an emergency hysterectomy or something less severe.

When I did wake up from surgery, already back in my room, I suddenly burst into tears.

“Why are you crying?” the doctor asked me.

“I’m just so glad I didn’t have to be cut open again!” I blubbered.

Instead they performed a simple D&C (dilation and curettage).

Apparently, my uterus had stopped properly contracting postpartum to manage healing and bleeding, and the area where the placenta had once been attached looked like a giant open wound. It wasn’t healing properly either so every blood vessel was just gushing with blood.

My uterus was also apparently filled with grape-sized clots of blood. (Why it started nearly 6 days postpartum instead of during my initial hospital stay, nobody knows.)

I’d lost about 3.5 grams of blood in that short span of time between naptime and the hospital. Another gram and I would’ve likely needed a blood transfusion. (I credit this to our awesome babysitter who came over so quickly when we called!)

Of course, I can’t prove that this was related to my feeling during the last few weeks of pregnancy that something was wrong, but for me, it was enough evidence that my uterus has probably had enough of this baby-making adventure.

Today, as I type this, Violet is about 2 months old. She still sleeps 18 to 20 hours a day (which is actually a very recent reduction from her 20 to 22 hours a day). She’s a very good eater and I’ve managed to avoid many breastfeeding-induced lows by keeping my background insulin dose about 1-unit lower than it probably would be otherwise, and taking my normal doses for meals.

Lucy doesn’t mind Violet’s high-pitched screams during the first few miles of any car-ride, and continues to tell us the baby is cute. The juggling act of two little girls’ needs would make for a good reality show: this morning Lucy pooped on the floor (because she’s potty training)…while Violet was desperately pleading for another meal on the boob…while I was making myself breakfast with the hope of getting us all out the door by 9 a.m. to make a mess at the children’s art studio in town. Don’t worry, I’d already had my cup of coffee!

(It goes without saying that my A1C has definitely popped up from 5.8 to 6.5 percent in these first 8 weeks of Violet’s life!)

Amidst the chaos, we are mostly just grateful, because type 1 diabetes has lost again at its attempt to interfere with real life. This body that can’t even produce a few drips of insulin has now produced two gorgeous little baby girls who are as healthy as any mama could wish for.

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Thank you so much, Ginger, for sharing your daughter’s story here.  Congratulations, from one T1D mama to the other!  <3

Guest Post: Giving Birth to Violet as a Woman with Type 1 Diabetes (Part 1)

Stories about moms with type 1 diabetes having babies warm my heart completely, mostly because they remind me of my kids’ birthdays but also because pregnancy and diabetes is hard work and deserves an extra WHOO HOOOO! at the end.  Today, fellow writer and T1D mama Ginger Vieira is borrowing SixUntilMe to share the story of the birth of her second child. Take it away, Ginger!

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“This time it will be simple.”

That’s what my husband and I had said to each other several times as the due date of our 2nd child was just a few weeks away. It’s not as if the birth of our 1st child, Lucy, was remarkably complicated–I felt pretty great during the last month of that pregnancy and had no swelling or other complications–but I did spend 4 days in the hospital prior to her actually evacuating the ol’ womb because our attempt at an induction totally failed. (Basically, my body was like, “Whatever. I really don’t feel like going into labor…deal with it.”)

This time was very different.

At 35 weeks, I started gaining 1 to 1.5 pounds of fluid per day. Swelling up like a water balloon just between my knees to the tip of my toes. But my blood pressure continued to stay well within the range of normal and even below 120/80 bpm, so the doctors continued to insist that I’d have a cesarean at 39 weeks and no sooner. My A1C was at 5.8 percent, and everything they could measure in a blood-draw came back fine, too.

And baby girl looked consistently healthy and comfortable. In fact, throughout the entire pregnancy, she and I had both been doing great except for super-crazy vomit-inducing over-production of stomach acid which I’d been treating since 3 months pregnant with as much antacid as my body was allowed. Otherwise, until this last month, the pregnancy had been anything but traditionally tedious and tiring.

By 36 weeks my energy was shifting dramatically between feeling like I could make it through the day and then suddenly feeling as though all I could do was lie on the floor like a pancake, trying not to cry (or sometimes crying) while also needing to chase and entertain my toddler.

By 37 weeks, I had gained nearly 15 pounds of pure fluid all within the prior 2 weeks. Everyone, including the nurses at my appointments, gasped in horror when they saw my feet. My swelling wasn’t a concern because it wasn’t in my face or hands and my blood sugar was still very normal. Personally, I think I would’ve been in severe pre-eclampsia had they made me wait another week. Meanwhile, walking through the grocery store wasn’t just uncomfortable–it was excruciatingly painful and my feet would be twice the size by the time I got back in my car.

Despite my lack of diagnosable symptoms, I felt very strongly that something was wrong. I can’t tell you what it was exactly, but like anyone with one or several chronic illness understands, there are things you can feel and know about your body when you’ve had to micromanage something as complicated as type 1 diabetes and fibromyalgia for several decades.

I felt like my body had met its personal limit of physical stress, and it was breaking down. The idea of trying to make it to 39 weeks had me bursting into tears when my husband came home from work after trying to hold them back throughout the day. You can call me a wimp and say it’s all just 3rd-trimester normal pregnancy exhaustion, but my body was struggling in ways no one could seem to measure.

I finally emailed Dr. Jones (who is now someone I might as well consider my hero!) and asked him if he and the OBGYN team would please consider a c-section at 38 weeks.

Fortunately, Dr. Jones strongly believes in “individualized care.” He was able to convince 3 out of the 6 members of this OBGYN high-risk team to support an early c-section at 38 weeks but only if baby’s lungs proved to be fully developed through an amniocentesis.

The other 3 doctors were firmly against an early c-section because on paper, I was still healthy. One doctor did acknowledge to me that I could’ve very well been in the early stages of pre-eclampsia, but again, my blood pressure was normal so it didn’t matter yet.

At 38 weeks, we arrived for the amniocentesis, nervous but hopeful. The procedure was extremely fast and simple. Dr. Jones inserted a very thin needle into my belly while watching its direction on an ultrasound screen and pulled out a small amount of fluid from my uterus. This fluid is then tested for something (honestly, I can’t remember right now) that indicates the maturity of the baby’s lungs.

Fortunately, baby’s lungs passed the test with flying colors.

My husband and I were both relieved–he saw firsthand the days where I could barely function in those prior 2 weeks.

Within 3 hours we were in the operating room being prepped for a c-section. And this part was a much better experience than my first c-section. By the time they did the c-section with Lucy, I had been on an IV drip of pitocin for nearly 4 days, extremely sleep-deprived, and having only eaten 1 real meal (because they prefer you don’t eat while you’re being induced). During Lucy’s birth I was very pale and weak, my teeth were chattering violently as a side-effect of the epidural, and I was a tired, occasionally incoherent mess during the few hours after she was born. However, not eating for 4 days did make it incredibly easy to keep my blood sugar at 90 mg/dL that week, which meant Lucy’s blood sugar after birth was perfect.

This time, during this c-section, my face was full of its normally rosey color, and I didn’t experience any uncomfortable side-effects from the epidural. I was lucid and bright-eyed and very ready. My blood sugars had been extremely steady in “non-diabetic range” all week with an extra dose of obsession that comes with the final weeks of pregnancy. The only blip was that about an hour before we went into for the c-section, I was worried my blood sugar was dropping so I drank about 2 oz of apple juice which unfortunately had my blood sugar up around 140 mg/dL during the actual c-section.

Everyone on our team was great: the nurses, the doctors, the extremely friendly anesthesiologist named Gabe (Dr. Gabe) who chatted with me throughout the entire operation, answered my random questions and laughed at my jokes while my husband held my hand and watched them carefully cut me open to bring this little creature out into the world.

And then she was born.

Violet Isabella.

We had been telling Lucy about this baby–Baby Violet– for weeks prior to her arrival but, like Lucy, we actually didn’t know anything about her besides her name.

And here she is.

“Well, hi,” I said quietly.

Meeting your 2nd child is different than meeting the first, at least it was for me. I felt so much calmer and certain. I knew how overwhelming the moment would be having met a life I’d been growing inside my own body before that it almost felt like a normal daily experience: Here, this is the baby you’ve been loving for the past 9 months that you’ve never seen before and that you actually know nothing about.

Baby Violet. You look like a tiny little peanut at 8 lbs. 5 oz. (Not “tiny” at all but yet….so damn tiny!)

Due to that unfortunate 140 mg/dL right before the c-section, her blood sugar was actually very low, around 27 mg/dL within the hour after her birth. Fortunately it came up quickly after one nursing session because my body might be lousy at producing insulin but it rocks at producing colostrum and breastmilk. So she was fine. Everything about her, in fact, was fine.

We spent the next 5 days snuggling and cooing and nursing. She slept about 23.5 hours a day. Her big sister thought she was adorable (and surprisingly still does, more than 2 months later). My long-acting insulin dose was down to 4 or 5 units a day (my non-pregnant dose is 11 units), and my blood sugars were mostly very manageable because I was taking so little insulin.

Speaking of insulin, I’m very grateful that Dr. Jones put a note in my chart that instructed the nurses and doctors to let me decide all of my own insulin doses postpartum. This special note was the result of telling him that during my postpartum experience with Lucy, I had to sneak insulin injections in the bathroom because the doctors wouldn’t give me enough insulin! Everyone followed Dr. Jones’ note effortlessly and this made our hospital stay particularly less stressful and far more enjoyable than our stay after Lucy was born.

(I should also add that the nurse, Barbara, who was with us almost every day, was amazing and so supportive.)

There was one day where I really over-did it with physical activity walking around the hospital trying to “pass gas” so I could given permission to go home and entertaining Lucy when she came to visit us, that by that evening I could barely move I was in so much pain. (I’d also had a severe allergic reaction to the chemicals in the hospital bedsheets and scratched myself so severely in my sleep that it looked like I’d been mauled by a very cute kitten.) So we stayed 5 days instead of 3 or 4, and finally went home feeling mostly great …

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Tomorrow, come back for Part 2 of Ginger’s birth story, where things take a wild turn (but end up ok … don’t worry!).  Thanks for sharing the story of Ms. Violet with us, Ginger!  See you tomorrow!

Ginger Vieira has lived with Type 1 diabetes and Celiac disease since 1999, and fibromyalgia since 2014. She is the author of Pregnancy with Type 1 Diabetes & Dealing with Diabetes Burnout & Emotional Eating with Diabetes & Your Diabetes Science Experiment. Ginger is a freelance writer and Editor Emeritus at DiabetesDaily, with a B.S. in Professional Writing and certifications in cognitive coaching, video blogging, record-setting competitive powerlifting, personal training, Ashtanga yoga, and motivational speaking.

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