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The best moment in your life

Someone recently asked me what was the best moment in my life, and I thought about it and realised how blessed I am to have so many to choose from.

Of course, the birth of my three kids were amazing, I think especially my first son as it was that life defining moment when I became a mother.  The kids changed our lives forever, they are just the best three people, they are smart, funny, loving, caring, sensitive and have beautiful souls, we couldn’t be prouder of them all and there are thousands of memories of amazing moments through their lives that have brought me so much joy.

My wedding days, yes multiple! We married in Las Vegas at the Viva Las Vegas wedding chapel by Elvis which was so much fun. And then we renewed our vows after ten years in a ceremony at home in our garden. Both of these were so special.

At our first wedding, we booked this amazing suite at the MGM grand, it had a hot tub and the biggest bed I’ve ever seen, it was super romantic. We had two kids when we married, Charlie was 3 and Ellie was 15 months old, the day of the wedding Ellie was sick, she’d cried all day and just wanted to be held and it was so stressful! My mum was supposed to be having them overnight so we could have a wedding night alone but she called to say she couldn’t cope with Ellie being poorly and so we picked up both kids. Our wedding night was spent with the kids playing in the hot tub and then all four of us ordered room service, got in the huge bed and watched Peter Pan. I suppose some might think it ruined things, but honestly, that moment of snuggling together and for the first time all having the same surname was perfect.

viva las vegas wedding

Our wedding renewal was one of the best days of my life, it was just perfect and I wish I could relive it! It was heaven, but there was a moment when all the guests had gone home (or passed out in the house!), it was quiet, 3am and after a whirlwind of a day, it was finally just me and Timm, I took off my shoes and got muddy stockings, Timm got a blanket and two glasses of champagne and we laid in a hammock together under the stars. That moment was pretty wonderful.

moody wedding photo bride with pick hair sequin dress

But there is one moment that is just my favourite. It’s the moment where if I had to live forever in it, I think I’d be happy.

Timm and I went to Vegas for a friends wedding a few years ago, we flew into LA and drove to Vegas. We stopped a night in a place called Pioneertown, Timm had been there before when he was touring and was desperate for me to see it. We got there late at night and so there wasn’t much to see, there’s one tiny motel and we crashed in bed exhausted.

pioneer town motel

We woke super early, it was still dark but jet lag kicked in and we were wide awake. Timm grabbed his jeans and I pulled on my boots and a hoodie with my nightie and we went outside as the sun started to rise. As we left our room I got my first glimpse of this amazing view, we were in the desert and I looked out on a street that could have been straight out of an old school western movie.

We went to the back of the motel and all we could see was sand, cacti and the biggest sky I’ve ever seen. There was so much sky, and as the sun slowly rose, it was every shade of pink and orange, no artist has ever painted anything as beautiful as that sky. We sat on a rock, hand in hand in silence, just watching the most perfect sunrise over a vista of empty space. No cars, no buildings, no people, just silence, nature and beauty.

pioneer town pappy and harriets

I looked back and found I had taken a picture of this morning, it’s not the best! We both look ever so tired and a bit rough and it doesn’t do the view justice at all!! But this is it, this is my best moment.

If there was one place I could go back to, Pioneertown would be it.  Ive had such a tough few years, five surgeries and one more to go, all the treatments and recovery, the anxiety, the depression… There have been times where I just didn’t know whether I would make it, but in the darkest of times thinking about the joy and love at the Pioneertown Motel kind of kept me going.  We plan to go back, I am not sure when, it is hard to plan too much when you are in and out of hospital but one day, Timm and I will be back under that sky.

sam and timm cleasby pioneer town us

I did some meditation recently and it suggested you imagined a place of peace, beauty and happiness and as I closed my eyes, my mind went straight to that moment, that place, that perfect moment.

 

What is your best moment? Let me know.

 

Sam xx

2014 – what a year!

What a year! I started 2014 in Sydney with my sister and our families, we travelled up the coast and had an epic road trip.  It has also brought me a hernia, a house move, surgery to create my jpouch, a couple of weeks in hospital, a new life learning to live without my colon or ileostomy bag and one more hernia!

I have been on the radio a few times, done talks all over the UK, hit my 100K views on So Bad Ass (now up to 160K) and started a writing course.  I also visited my aunty and uncle in Spain and honeymooned in Lanzarote with Timm  I made a new friend who has a stoma… we made friends because we have no colons but stayed friends because we are awesome and he makes me laugh in a rather unladylike fashion and knows, like really knows…  I made new friends without stomas who I now feel like I have known forever and I hung out with so many old friends who made every tough part of my year easier and every lovely part of my year happier.

We bought a hot tub, I got a big tattoo, I met Chuck D and Flavor Flav, went on a nudist beach and my sister came over to the UK to visit with her family.

I renewed my wedding vows to the best husband in the whole world in the BEST WEDDING EVER surrounded by all my absolute favourite people and married by one of my best friends Violet.

2014 has had it’s ups and downs.  The wedding was amazing, it was just the most beautiful and perfect day and to get to marry my perfect bloke for the second time was the best thing ever and my total highlight of the year.

The surgery was tough, 10 days in hospital after a long, difficult surgery and now 7 months later I am still recovering and learning how to deal with my jpouch.  The past 18 months have been the toughest of my life.  Being so ill and having life changing surgeries have been at times almost too much to bear, there were times when I felt so low, so broken and in so much pain that I just didn’t know how I would cope.

I learnt that coping is the only option.  Every day, no matter how hard it is, you have to just keep plodding, just keep swimming, just keep going… Having fantastic people around you helps and I am lucky enough to have some of the best.  My amazing husband, family and friends make it all bearable in those dark moments and I can’t thank them enough.

This year has seen So Bad Ass turn from a small personal blog into something that is read all over the world and (hopefully) helps people.  All I ever wanted from this blog is to make a difference to other people, to use my pain and my journey to help other people with IBD, to use it to raise awareness, raise money for Crohns and Colitis UK and to help people everywhere to have better self esteem, body confidence and to love themselves.

You are all amazing and I thank you from the bottom of my heart for every read, every like, every tweet, every share, every kind word.  You are awesome!

Enjoy and I will see you in 2015!

 

xx

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ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

 

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Thanks again for an amazing year, if you fancy doing something wonderful please go to my Just Giving page and give whatever you can to Crohns and Colitis UK.

 

Have an amazing christmas and a brilliant New Year!

 

See you in 2015

 

Sam xxx

Wedding Video

As some regular readers may know, on 6th September 2014 Timm and I renewed our wedding vows after 10 years of marriage.  It was at the end of the toughest year of our lives, almost exactly a year before I had a subtotal colectomy and ileostomy and 4 months before I had another big surgery to create a jpouch.

This year was HARD and there were times that we really considered cancelling the renewal of our vows but we decided we would go with it, we wanted to celebrate together that our marriage was stronger than ever despite the enormous pressures we had faced and we really wanted to celebrate with our family and friends and have a day filled with joy, love and happiness.

We invited Helene from Cuckoo Films to document the day for us.  We wanted an overview of the wedding renewal and something that would show our personalities.  We are blown away with the result.  I cry EVERY time I watch it and just feel so blessed and happy.

Thank you tons to John Ashton of Little Gem for the amazing soundtrack.

 

Enjoy x

 

#cleasbysinlove

The wedding renewal was last Saturday and was just perfect…

I will do a full blog post when I get my photos and video back but till then all I can say is that it was the best day of my life…

rock n roll wedding

 

You can see a sneak preview of just a few of our photographs by our very talented photographer Mark Tierney from Tierney Photography here.

 

Sam xxx

The wedding dress saga

In September this year, my husband Timm and I are renewing our wedding vows after being married for ten years and together for sixteen years! We married in May 2004 in Las Vegas, we had originally planned a big white wedding at home, but the stress of everyone else trying to dictate our day just got too much and so we eloped and were married by the king…

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It was such a fantastic day, we married at the Viva Las Vegas wedding chapel, I wore a red and white floral dress and in the evening we ate at the Stratosphere in their revolving restaurant . It was pretty much perfect.

We decided to renew our vows a couple of years ago. Partly because we have just changed so much in ten years, partly because we wanted to share it all with our friends and family and partly because we wanted a big party! Then after the past year of illness, surgery and recovery, our wedding renewal has become such a big thing, it’s the thing that’s kept me going through bad times and given me something to look forward to.

The first thing I thought about was my wedding dress. As I didn’t wear one the first time round I was adamant that this time I wanted a ‘proper’ gown. When I looked at dresses I realised that the ones I liked were around £1,000 and I knew I couldn’t spend that much money. After not working for our business for long periods of time whilst recovering I just can’t warrant spending that much money on a dress I’ll wear once. We have three kids and a business to run, it just doesn’t seem right.

Then I saw dresses from China on eBay at a massive reduction. The dress I fell in love with was just £90. Now I always think if something seems too good to be true then it probably is. But asking around a lot of people said they knew people who’d had dresses from China and they were fantastic. So I risked it and sent my measurements along with £90 through PayPal to an eBay seller.

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I received an email saying they’d got my measurements and payment and the my dress would be with me by 26th July. Shortly after, I got an email from eBay saying the item had been removed but if I had paid then I would still receive the dress. I was panicked but they assured me I would still get it.

I then saw that the seller had been removed!!! Again eBay said that the item should still come and nothing could be done till after the date of delivery had passed. So I crossed my fingers and toes and waited…

My dress hasn’t come.

I’m now five weeks away from the wedding and have no dress. I cried a lot yesterday, that may seem daft as I know it’s only a dress but I’d set my hopes on it and had these dreams of walking down the aisle in it. The last year has been so hard, two major surgeries and a body full of scars mean that though I fight hard to remain positive, sometimes my body makes me sad. It looks so war beaten, so battered and forlorn.

I thought in wearing this dress, that for the first time in a long time I would feel really beautiful. I thought people will look at me and see a bride, not a patient. They won’t think about scars and ileostomy bags, no one will be thinking ‘there goes the lady who talks about poop’. I know this is silly. A dress is a dress. But I had pinned all these hopes and dreams onto this dress and now it’s not here.

I wanted something special for Timm. He has been my carer for so long and in the last year he has seen me at rock bottom, he’s watched me as a broken woman, full of scars and wounds. He’s had to wash me and carry me, he has cleaned me when I’ve had accidents and literally supported me on the toilet when I was too weak. I wanted him to see me and for none of that to be in his mind. Does this sound silly? I wanted him to be blown away when he saw me, for me to look nothing like the sad crying woman he had to push in a wheelchair. I wanted to look like a bride.

I now don’t have enough time to get a dress from a bridal shop even if I had the money. I’m limited by budget and time to high street off the peg dresses or second hand. I’m sure I’ll find something but I can’t help but feel really sad. My friends have rallied and today we are off shopping to see what I can find.

I need to remember that this wedding is about how much Timm and I love each other. A dress won’t change that and after all we have been through, this is but a tiny blip. Our wedding will be a fantastic day because we will be there together.

I’ll remember that and repeat it to myself all day.

Love Sam x

*UPDATE*

I opened a resolution case with eBay, after 8 days the seller hadn’t responded so I escalated the case.

I just received an email from eBay saying they have closed the case and I won’t be getting a refund.

WTF? I’m gutted.

This is the confirmation I got from the seller…

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Then I got this from eBay…

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This is the one I got today, no explanation!!!

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If anyone can help or advise I’d be very grateful 😥

Bride with an ileostomy bag

I have been married to my awesome husband Timm for ten years in May 2014, we married in Las Vegas with Elvis in gold lame, an amazing experience that was so fun and just right for us at the time.  We had two small kids and the pressures of planning a big white wedding got to us and so we packed up and eloped to have the most ridiculous, fantastic wedding we could think of!

viva las vegas wedding

viva las vegas wedding

We had an absolute ball and it was just right for us, but it was marred with sadness that some people who really mattered to us couldn’t make it.  So for our tenth wedding anniversary we decided to renew our vows, that is happening this September in a ceremony and reception that we can invite all our nearest and dearest to.

I am currently in the midst of planning the whole shebang, I am spending more time than is healthy on pinterest and just trying to plan the perfect wedding for us now, ten years older and wiser.  Im looking at beautiful venues, Ive asked my (NINE) bridesmaids if they will be part of our day, we are looking at food and music, themes and Im spending a LOT of time reading Rock n Roll Bride.

But Im also feeling worried.  Im thinking about how this will be a day where Timm and I are centre of attention and crazy scared about being a bride with an ileostomy bag.  I brazen it out most of the time and if you read my blog you know Im not against showing my bag off, it helps me to think Im helping raise awareness when I talk about my experiences with a stoma but sometimes it hits me hard.

As I look through hundreds of beautiful wedding dresses I look at the fronts to see if my ileostomy bag would be on show, I think about where waist bands will sit and whether they will cut across my bag, I wonder whether my forced cheer will hold out on me wearing a big white dress.  I think about the horrific consequences of a bag leak in a wedding frock!!!

I see all this gorgeous, silky, lacy wedding underwear and laugh wryly wondering if they do anything to fit around a stoma, then I get scared that I won’t be a ‘proper’ bride whilst sporting an ileostomy under my gown.  I wailed at Timm this morning that Im going to be a bride that smells of poo… He laughed his head off and reminded me that I never smell of poo and gave me a cuddle.

Im finding it hard to put into words how I feel about being a bride with a bag, of course I know it doesn’t make a difference, but I can’t help feeling a bit sad that I won’t be a ‘perfect’ bride.  Id love to be able to take the stoma off for a day, to have one day where Im not thinking about medical things.  I want my bridal handbag to be filled with pretty things and perhaps a drop of dutch courage, not stoma adhesive and barrier creams.  I don’t want to have to worry that if I drink champagne that my bag will get gassy and Id rather my wedding night didn’t involve a big plastic bag stuck to my stomach!

I sometimes worry that Timm shouldn’t have to deal with all this, that he should  have a wife who doesn’t carry bodily waste around with her.  And I suppose those feelings are coming to a head whilst planning our renewal.  I DO know that all these things are in my head, that in reality Im a super lucky woman who has a husband who loves her.  I also know that our wedding renewal is about love.  Its a celebration of our relationship, our joy, our devotion to one another.  Its nothing to do with being perfect, anyone who has been together fifteen years knows their partner isn’t perfect, because we are all deliciously and uniquely flawed, its what makes us who we are.

Timm said to me this morning “I think you are beautiful at your very worst, at your best you have me in tears”

And thats why Im marrying him.  Again.

Love Sam xx