Lots of people have been getting in touch recently asking for Crohn’s or IBD advice after being first diagnosed and I suddenly thought it would benefit others to write down my entire Crohn’s story – warts and all, from start to finish (well, to present!), for World IBD Day today. I was diagnosed at the age of four, and now at the age of 25, I’ve experienced A WHOLE BUNCH OF STUFF, including lots of abdominal surgery (yes, I’ve had a ileostomy) and medication. I sincerely hope that documenting some of my experiences may help others suffering from IBD, those who have just been diagnosed or just want to understand more about the illness. It’s a confusing and ever changing illness and I must stress that every single person with IBD is individual. What works for one person won’t work for another – there is no IBD ‘path’ – you just have to carve your own story! (So basically, don’t freak out if you’re newly diagnosed and reading this!)

So let’s start with diagnosis, and to be honest, I can keep this pretty brief, seeing as I was four years old and I really don’t remember much! I was on holiday with my family in Wales, when my parents noticed I was getting extremely pale, not eating, losing weight and going to the bathroom A LOT. On one horrible morning when my mum asked me how I was feeling, I told her I was losing blood. I went straight to a hospital in Wales, where I was admitted and quickly transferred over to an expert gastro unit in Oxford, where I was diagnosed with Crohn’s Disease. And that was the start of my IBD journey! I should add here that Crohn’s Disease is an autoimmune disease – it is your immune system malfunctioning.

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Let’s ignrore my questionable haircut and my brother’s weird face. On steroids in primary school

In simple terms, the body eats away at the digestive system, causing inflammation, ulcers and bleeding anywhere along the digestive tract. I was at my sickest as a child; I remember countless birthdays and Easters spent in hospital. My first treatment was steroids, which sent me completely bonkers and made me put on weight faster than an inflating balloon. My disease was ravaging my large intestine, and although the steroids worked for a short time, as soon as my dose was reduced, I would start to flare again – big time. I went through cycles of mesalazine, azathioprine and infliximab, but nothing would calm my angry insides.

When I was coming up to about ten years old, I went on my first liquid diet. By this point, the conversations about having to remove my large intestine had been floating around for some months now. It was pretty clear that the disease was extremely resistant– it wasn’t responding to any medication. The liquid diet consisted of drinking cartons of Elemental 028, a nutritional drink designed to be absorbed instantly into the body, with your gut having to do absolutely zero work. As I was about to enter puberty,

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I thought I wore it well tbf. At school age 11

I was required to consume even more of the liquid to ensure my growth wasn’t stunted. It was physically impossible to drink the required amount, and so I would sleep with a tube that went up my nose and into my stomach and the rest of the liquid would be pumped into my body. In the very early days of the liquid diet, it was so traumatising having the tube passed up my nose that I didn’t want to take it out – so I went to school with it. The psychological battle was immense, but the liquid diet was my most effective treatment yet.

Alas, a few weeks after I started eating again, the Crohn’s returned with vengeance and at the age of twelve, I had an ileostomy formed. By this point I was practically begging them to take my large intestine out – I was tired of being constantly sick and living this half life in and out of hospital. Still being so young, they were reluctant to actually remove it all, and hoped that bypassing it via the ileostomy would help it heal. It did not. Nine months later I was back under anaesthetic and had my entire large intestine removed – with the exception of a tiny bit at the rectum. This tiny bit of intestine turned out to be my saving grace. Due to the mechanics of the colon, because I still had that little bit left, there was a chance they could reconnect my small intestine with the end of my large intestine and a chance I could be bag free in the future. To be honest, I think this is what got me through. Although I was desperate to feel better, nothing could prepare me for the emotional and psychological difficulties of living with a bag whilst I was going through puberty. A teenager is self-conscious enough as it is right – without having to worry about part of your intestine sticking out of your stomach! The three years with an ileostomy are a blur now, but it dramatically changed my quality of life. I finally had my life back. I was able to function – I was able to go to school everyday. I was able to hang out with my friends. I didn’t have to take drugs, I could eat what I wanted and I wasn’t at the mercy of my disease anymore.

When I reached the age of sixteen, the ileostomy had done its job and I was rewarded with a bag reversal. Another major operation, reopening my entire 30cm scar and another scar left where the ileostomy once was, but I was completely liberated. FREE FROM A BAG! Lollzzzz but totally not free of Crohn’s. I was actually pretty healthy doing my ALevels and I secured my place at Loughborough University to do a degree in Drama with seeming ease (health wise at least!) I had the most amazing time at university, but during this time, the Crohn’s began to spread to the lower part of my rectum and small intestine, and so I was put on Humira – a weekly injection administered myself. This managed to get the Crohn’s under control, but by my second year I was struggling with repetitive obstructive symptoms. I was in and out of hospital, in and out of A & E, and it came to pass that they had to operate.

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After my sixth operation, I asked my Mum to take this to let me friends know I was ok. Two hours out of surgery, I have no recollection of this being taken!!

Again. They found and closed an internal hernia, as well as adhesions, which were causing the obstructions. A year and a half later, just as I was completing my finals, the obstructive symptoms started again and after a particular memorable experience where I lay in a hospital bed in Leicester, surrounded by my friends and boyfriend who had fled a night out to my aid, I was under the knife again. Looking back, it was perhaps the immense amount of partying (I’m only human!) that took place over these three years that led me to need these two ops. The toll to my body was great and as I was recovering from my fifth operation, I began to ask myself, would these operations EVER stop?

After recovering from this fifth op, I plodded on quite well for a while. I got myself a job at the BBC as a Researcher and plunged myself into the world of commuting and full time work. I’d be lying if I said it was easy, my body took a while to adjust to the exhaustion. After my 21st birthday, a hernia popped up on my scar. LO AND BEHOLD – ANOTHER OPERATION. By this time I was officially at breaking point with being opened up so many times. I remember vividly bursting into hysterical tears in front of the surgeon and asking him, ‘WHEN WILL THIS END?’ I like to think I am an extremely strong individual, but I just couldn’t take any more operations. The isolation of the 8 week recovery alone was enough to send me completely insane, let alone the physical shock of going through all that pain over and over again.

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Apols for the faint hearted here, but this was post my sixth op. You can see the little scar from my ileostomy too

I guess the positive of undergoing such repetitive surgery was becoming proud of my scar. It’s 30cm long, stretching from just below my chest to below my pelvis and it’s extremely visible. I wear it loud and proud now and I take the stares on the beach to mean, ‘wow – that girl must be made of steel!!’

I got to spring 2016, when I started to relapse again and I was given the choice, which lead me to start writing this blog in the first place. Sat in front of my gastro specialist, he told me I needed a quick treatment that was guaranteed to work – steroids. I couldn’t do it to my body- I couldn’t do it to my mental health! So I took on the one month liquid diet, which is where this blog was born. It was honestly the best thing I ever did and despite the mental battle, I came out feeling amazing. My skin was glowing and I appreciated the impact of what I put in my body more than ever. I reintroduced food gradually and found I was intolerant to whole food groups by keeping a food diary for weeks, which has further kept my tum happy. You can read my liquid diet journey here. In October, I learnt to meditate – a skill, which my paediatrician had tried to introduce to me during puberty. You can read more about my journey to meditation here.

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Ended up forming quite a bond with my liquid diet cartons

Since then I have taken a short nutrition course, started yoga classes and started experimenting with what I eat and how it feels in my tum. I feel so very grateful for the journey I have come on to where I am today. I whole-heartedly believe everything happens for a reason and my IBD journey was meant to lead me to where I am today. To stand tall, tell my story and be confident in who I am. Because there are thousands of stories like mine that aren’t being shared, or are being misunderstood. IBD ain’t glamorous. Heck, I’d enjoy a day where I didn’t think about my gut – but that is the reality for so many of us living with Crohn’s Disease or Ulcerative Colitis. This is what we live with and we plod on. We make mothers, fathers, partners, friends and colleagues and STILL battle the debilitating symptoms of IBD – with a smile. I dare anyone who is embarrassed or struggling to deal with their IBD to speak out, confide in a friends/family and realise YOU ARE STILL B****Y BRILLIANT. IBD will not rule your life.

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Living and loving life in Bali – wearing that scar loud and proud. YES I’VE BEEN TRAVELLING TOO!

If you’ve got to the end of this epically long post, then thank you so much for reading and I hope you have taken something from my story. I would welcome comments/feedback  (comment below!) and any of your stories. I would love to hear them all.

Happy World IBD Day!

*I know I haven’t just written a book, so to do a thank you sounds weird – but I can’t write this and not mention the amazing care I have received over my entire Crohn’s journey from the gastro team at John Radcliffe Hospital. They have always answered all my questions, listened to me when I have said no, given me VIP treatment and taken the best possible care of me. Brilliant, brilliant team.*

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bryonyhopkins

 

Stress is not caused by the environment, but by our reaction to the environment.

This is by far the most important and poignant message that I learnt recently when I embarked on a four-day meditation course.
I know what you’re thinking… meditation? How stressed must you be to resort to meditation??! The truth is, I’m not particularly stressed. Well, of course, I am stressed, but I’m no more stressed than Billy the postman or Leila who served me a latte this morning. We are all stressed. We all take on stress from our own lives and then feed off each other’s stress. It really is one big stress cycle. So when I signed up for meditation, my primary reason wasn’t to de-stress me (although, that has been an added bonus). My main reason was to further explore and understand the power of the mind over the body. For me stress= Crohns flare. The correlation was so alarmingly obvious; it became something I couldn’t ignore anymore.
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Throwback ten years ago, to my fourteen year old self, and I actually learnt how to meditate alongside my paediatric specialist, Dr Sullivan. I was extremely poorly. I had been on every drug under the sun and my body was still raging with inflammation. Major life altering surgery was looming and amongst this, Dr Sullivan suggested I tried meditating. I have to be honest – I didn’t get it. I was a teenager and I was full of hormones! Despite this, I went to a meditating school in London where I learnt the technique but I really couldn’t get on board with it. I wasn’t ready or prepared to understand.
Looking back now, I couldn’t be more grateful for what he did. He planted the seed, which has grown as I’ve settled into my life (ie turned into an adult). It niggled and I couldn’t get rid of it – I knew there must be some value in meditating and I had to go back and find out more. So I signed up for a four day basic meditation course at the London Centre of Meditation to see what I was missing out on.

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The door that welcomed me to my meditation course

 
The technique I learnt was ‘vedic meditation’ – originating from ‘Ayreveda’, one of the oldest holistic bodies of knowledge in the world. Vedic meditation originates from India, in the foothills of the Himalayas. The theory of this type of meditation is deep rooted and practiced by repeating a personal mantra silently in the mind. As soon as I sat down on day one, I knew I had to forget what I had previously learnt ten years ago. The technique was different, the philosophy was different and I had to give this a go with a completely open mind.
Jillian, our meditation coach got us meditating on day one. We each learnt an individual mantra in private and then returned as a group to practice our first meditation together. It’s hard to articulate the feeling of that first twenty-minute practice, but it was blissful. Whilst thoughts still danced around in my head, by coming quietly back to my mantra, I was able to relax and I barely noticed the minutes passing. I felt my muscles relax, my tense shoulders loosen and my brain begin to slow down. It was truly peaceful. I was so chilled on the way home from the session I completely missed my stop on the train! I couldn’t understand how I had missed this feeling ten years ago?!!
Over the next two days, with the homework to meditate for twenty minutes morning and evening, Jillian helped us understand the power of the mantra and how we are realistically going to fit twenty minutes twice a day into our lives. I was extremely reluctant to give up anymore sleep, ESPECIALLY in the morning, but I was surprised how keen I was to jump out of bed into my meditation. During meditation, your metabolic rate is lower than that of the deepest point in your sleep. Similarly, during a meditation session, your body will be receiving 2-5x the amount of rest you receive during sleep. I know what you’re thinking – how can that possibly be right? But the science backs it up. Read more here and here. There are real physical changes that happen during the body during meditation – changes for the better.
I was generally astonished at how quickly I began to feel the difference in my life. I began to feel more relaxed at work and more able to cope with changing demands. Decisions that I had been torturing myself over become clearer. On day four of the course Jillian talked to us about ‘transcending’ – and suddenly I had a flashback to ten years ago. ‘Transcending’ was all I was taught and all I was told to seek to achieve – the place in your mind where you travel beyond thought and sit in a blissful place of total tranquility. Reaching the stage of total tranquility on a permanent basis is known as ‘enlightenment’ – although few ever reach this stage.
fullsizerender-2Whilst I am not expecting a miracle on my Crohns through meditation, I am excited to see if the long-term effects have any impact on my physical health. I have a lot more reading and understanding to do but I feel like I’ve opened another chapter in the life of Bryony.Two weeks on from the course and I am still juggling managing to fit the 40 minutes of meditation into my life, but I’m getting there. The most fascinating thing I found was that it was just the normal Tom, John and Ben learning to meditate with me – businessmen from the city and family men. There was nothing weird about it or any cult feeling about it. Which made me wonder why more people aren’t doing it?! If you can just close your eyes for 20 minutes and feel a benefit… why wouldn’t you do it?*
Continue to follow my blog to keep up to date with the first few months in my meditation journey!
*Critics insert a long list of excuses here!
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bryonyhopkins

I have been absent from A Belly Full for over a month now and for that I am sorry – but `I promise it was post worthy! Sometimes it’s healthy to get away from the daily grind and that’s exactly what I’ve been doing. I spent two amazing weeks exploring

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Cuddling elephants at Elephant Safari Park, Ubud

Bali with my two best friends and it was the ultimate trip of a lifetime. I travelled across the world to drink in pool bars, hike through jungles, learn all about the Hindu way of life  go white water rafting, cuddle elephants and so much more (including a squat toilet… that was a whole adventure in itself)! AND of course I couldn’t leave Indonesia without learning how to cook some of their traditional dishes which I can’t wait to share with you.
 
I have so many tips and tricks for travelling around this beautiful country which I will share with you in instalments (I literally feel like I could ramble for pages). We visited Seminyak, Ubud, Gilli T and Gilli Air – but there is still so much we didn’t get to see! Which obviously means I have to go back. Right now I just want to share three of my absolute highlights with you, so you just get a snapshot of my two weeks living the Balinese life (well, kind of…)
Exploring the North
On our third day of the holiday, we took a day trip to the North of the island (we were staying in the south, in Seminyak). We had an incredible personal taxi driver – Mano Tours – who
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The views of Tanah Lot Temple

picked us up from our hotel in a cool air conditioning SUV, literally perfect in the sweltering hot weather! We paid around 1,000,000 Indonesian rupiahs for the day, which works out at about £20 each – which is EXTREMELY good value for what we got! We had already agreed some desired destinations and our first stop was the Tanah Lot Temple in Tabanan (this was en route to the north, on the south west of the island). The views were incredible and we started to get an idea of the rich Hindu culture in Bali. Tanah Lot means “Land Sea” in the Balinese  language and the temple sits on a large offshore rock which has been shaped continuously over the years by the ocean tide. We went early morning so didn’t see the views at sunset, but the tour guide told us hundreds flocked to the sight every evening to see the sun sink below the temple.
 
We then travelled further north to visit Pura Taman Ayunand (The Royal Temple) and then even fu
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Three english roses outside The Royal Temple

rther north to reach the mountainous area and the Ulun Danu Bratan Temple – one of the most famous tourist temples in the country. All three were gorgeous and it was fascinating to learn about the worship and ceremonial practices of the Balinese culture. As we drove through the landscape, the tour guide told us most Balinese people originate from small villages outside the main tourist spots (Seminyak, Ubud, Kuta etc) and often live and work in their village throughout their lifetime. Some families own rice paddies or farms, whilst other men work in construction. The women often stay at home and cook, clean and look after the family. Many young Balinese children grow up to move to Ubud and work in hospitality – yet tradition states the youngest son must stay in the village to look after the family. Our tour guide says this doesn’t always happen these days – in fact he had earnt enough money to pay for his parents house in the village.
 
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Ulan Danu Bratan Temple

After the temples we visited the most amazing waterfall – a first for me!! We trekked down around 500 steps into the jungle to get down to reach Nungnung waterfall (it was SUCH hard work on the legs) – but the view was 100% worth it.
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What a natural beauty. (I mean the waterfall – not me)

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We also took a moment to appreciate the tranquility of the jungle

To finish off the day we took a dip in the Banjar Holy Hot Springs right in the north of Bali , where we cleansed our souls and relaxed in the warm water surrounded by the jungle. It was a three hour car trip back to our hotel in Seminyak, but it was amazing to see so much of northern Bali without taking a chunk out of our trip.
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Soul cleansing in the Holy Hot Spring

Mount Batur
We booked the Mount Batur trek before we travelled to Bali and I have to say – I really wasn’t expecting to enjoy it that much. Mount Batur is an active volcano located in the north west and is famous for its gorgeous sunrise views. When my friend told me we had to be picked up at 2AM for the sunrise climb, you can only imagine my dismay (as someone who values sleep more highly than actually being awake!!) We were picked up from our hotel in the end at 2.30am and took an hour ride to the base of Mount Batur. We were then faced with the two hour climb through pitch black jungle to reach the sunrise point at the top… I know, I’m really selling it right? Once we pulled up at the bottom of Batur we were greeted by our personal tour guide – who equipped us with head torches and walking sticks. And that was it – off we went. In pitch black. It was surprisingly steep in places and often we had to stop to catch our breath – and for the lovely tour guide to offer us a snack from his backpack! The rocky terrain was hard to navigate at times, but wherever you looked, there were teams of other tourists powering up the route to reach the viewing point for sunrise. We reached the summit just before the sun began to rise and we were able to sit on a bench which looked over the entire Lake Batur.
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Breathtaking

The view when the sun began to peak over the horizon was breathtaking – and even more so when the sun started beaming over. We were lucky to have a day when there wasn’t a cloud in the sky and the view stretched on for eternity.
If that view wasn’t enough, we then were able toimg_4971-1 get up close and personal with some mountain monkeys, who certainly were not afraid to pitch a hat or two!We also felt the steam as it still spiralled out of the active volcano and saw a sacred cave where Hindu ceremonies often take place. The whole experience was incredible – if not completely shattering! It’s safe to say the rest of the day was dedicated to napping and/or sunbathing!
Gili Islands
After spending one week on mainland Bali, we travelled to the Gili Islands, which are part of a neighbouring Indonesian island called Lombok. Our time in the Gilis was the ultimate chill time – spending four days on Gili Trawangan and two days on Gili Air. Despite the islands being more built up for tourists than I initially imagined, the vibe was very relaxed and the pace was much slower to that of Bali. It was a shock at first to be woken by the regular calls to prayer (unlike Bali, Lombok is a Muslim country), we settled into the routine of eat, sunbath, sleep, repeat and our highlight of the day became walking to the north of the island to watch the sunset.
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The famous Gili  T swinging into the sunset!

I was absolutely over the moon to finish off our trip with a cooking class in Gili Air after enjoying so much Indonesian cuisine (have yet to cook myself up a Nasi Goreng since being home, the most traditional Indonesian dish!) We cooked up four dishes at the Gili Cooking Classes, including some unique Lombok sweets, a classic satay sauce, traditional fried noodles and a yellow chicken curry.
Look out for a more detailed blog on this and some alterations so you can make these dishes at home!
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Cooking up a storm

This post is really only giving you a flavour of what I experienced in Bali and I’m really excited to share more in depth posts on each place we visited so keep your eyes peeled. I haven’t even touched on the elephants, white water rafting or markets! What I have learnt since being away is the soul and the mind needs a break – seeing the world whilst doing it is just an awesome bonus.
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bryonyhopkins

This is a skill that I have been forced to learn – and boy, has it taken some years. Arguably, learning to listen to your body is the most important step to keeping

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I was completely in tune with my body when I decided to take on the liquid diet. I knew it was the best option for me over steroids.

your body and soul happy and healthy. Yet most people I have spoken to admit they do know their body and the warning signs when things are about to go south – but they struggle to actually do anything about it. Listening to your body is completely useless unless you actually respond to it. Responding is pivotal- and really can work wonders (I am living proof of this!) Let me explain.
What do you mean when you say ‘listen to your body’?
Listening to your body is being in tune with your physical and emotional needs, and learning what you can do to feed and nourish them. On a basic level, this is eating when you’re hungry; sleeping when you’re tired. Yet there are so many levels above this and learning to hear them is a source of great power. It is fact that your body will always give you signs when it is struggling. That niggling cold for example, is the first sign that your body is in distress. Those tears you shed, is a sign that your soul is sad. Equally, it will also tell you when it is flourishing – those endorphins when you see the person you love or the excitement at an upcoming trip or event. Whilst this may seem blindingly obvious – why do we so often ignore these signs? The answer is one word – life.
Life is busy. Too busy. We work hard and long hours. We are constantly tapped into the digital world; social media, work emails, news outlets and celebrity culture. So it is unsurprising that amongst all this noise, our bodies are ignored. It’s boring to rest/take downtime/acknowledge home truths that require unwanted action.
I will hold my hands up and admit I have been the queen of ignoring my body in the past – particularly during university. This has resulted in some disastrous outcomes – including weeks laid up in bed due to fatigue, surgery, flare ups and on one particularly memorable occasion, contracting Mumps (despite having had the jab!!) My body was tired and vulnerable. Unfortunately, that is just through working hard and having a social life. A home truth which I still find extremely hard to acknowledge.
How do I respond to my body?
On feeling warning signs it’s important to evaluate what you can do to stop things escalating. If you have the beginnings of a cold, take time to rest and make sure you get lots of sleep. If you’re feeling tearful – acknowledge why you’re feeling sad and what you can do about it. Unhappy in your job? Find ways to love it or move. Unhappy in your relationship? Address it or leave. Find something that gives you some ME time – yoga, mindfulness, running or cooking. Whilst my examples may be extreme and you probably won’t end up having surgery if you ignore your body, you may end up getting sick, physically or emotionally – and why let it get to that?
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Taking time out on holiday is one my fave ways to unwind and refresh (unfortunately, my bank balance doesn’t allow this to happen as regularly as I’d like!)

I now know that I have to rest when I start getting warning signs – and sometimes I still get it wrong. I have just had to take four days of enforced rest as my body started rejecting all my food – a tell tale sign for me that my body is at breaking point. Utterly exhausted, I knew that if I had pushed through it (which I so often did at university), I would have ended up in a far worse position than just a couple of days off work.
The first step
Is to figure out what makes your body tick and what your body needs to bloom. This could be SO MANY THINGS! It could be a particular diet or exercise. It could be a hobby or spending time with particular people. It could be working a job you love, going on an amazing trip or having a social media detox. In deciphering this – you will also find the things that your body struggles with.For me, it is relentless work and social plans, meaning I have to prioritise how I spend my energy and know when it is time to stop. It is also eating foods that work for me and knowing that my health is THE most important thing. Even more important than the party I really really want to go to!
 
Believe me – I don’t say any of this lightly. It is difficult – but so worth it if you can find your body formula.
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bryonyhopkins