‘Do you want basal with that pizza?’ We were in Little Italy at a restaurant we’d been sent to by the owner of a local guitar store.

I stared blankly at the waiter. What was he asking me? Of course I’ll need basal with that pizza – it’s freaking pizza. And I’ll need a shed-load of dual wave bolus too. Why were we even having this conversation?

‘Basil’ my husband whispered to me.

‘Oh, BASIL! Basil! Yes. Yes please.’

In Barnes and Noble the other day, loitering in the kids’ section with the kidlet, I saw this book:

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The other night, wandering around a holiday market, we warmed our freezing fingers in a chocolate shop and I saw these – the perfect antidote to a syringe of insulin!

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As we made our way to a guitar shop in the East Village, we walked by this diner – surely the perfect place to treat a low.

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Just a couple of blocks from our apartment is this sculpture. And even though I know it’s not about diabetes, it is to me.

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And every time I look up, I see skyscrapers that are shiny and edgy and beautiful. And they remind me of sharp, pointy needles.

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Diabetes – if you look, you can find it everywhere…

I was more than a little honoured to see that three Diabetogenic posts from last year had been voted Best of the Betes Blogs. Thanks to Sara from Moments of Wonderful for running this – and acknowledging diabetes blogs and bloggers. And thanks to those who voted for me.

In New York City, the streets are full of people. With only hours until the ball drops, there are people everywhere and more police than I have ever seen trying to control the flow of people and traffic. We just fought the crowds to get back to our apartment where we plan to spend a couple of hours before braving the cold and heading out again to catch some fireworks and see in 2015.

Never one for resolutions, I don’t have a list of things I plan to achieve. As tough as 2014 was, I’m not swearing to leave it behind with promises of new starts. I’ve tried that the last couple of years only to find more difficult times ahead. I have learnt that a clock ticking over to 1 January does not promise anything new. It really doesn’t.

But that doesn’t mean I am not hopeful.

Today, as we spent a most wonderful afternoon in what could be the most beautiful place in NYC, I saw this card:

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And then I realised that as much as I don’t care for resolutions, I do care for these things. And it is with pleasure, and a hopeful heart, that I can say that right here, right now, I have all these things. I am healthy – despite diabetes; and I am happy and at peace with who I am.

And in all honesty, that is a really good way to see in the New Year.

Wishing you all the happiest of holidays, merriest of Christmases and most joyful of times – however you choose to celebrate.

We’re celebrating with dear friends in New York. Missing our extended clan back home in Melbourne, but so lucky and pleased to be sharing the season with a great family, and enjoying a northern hemisphere Christmas. (Message to Santa – could you please make it snow? Please? Pretty please?)

Thank you for dropping by this year; for the support; for the laughs and for the love. It’s been a tough year, but 2015 is looming bright. Bring it on!

Much love from my gorgeous family to yours.

Renza

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Take it away, Bruce!

Eighteen months ago, we’d never even heard of American Girl. In fact, it was a completely blank look I gave one of my friends when she told me that we had to take the kidlet to AG when we were visiting the US in the middle of last year.

‘What is it?’ I asked

‘Only the best doll shop in the world.’ My friend had bought her daughter – a friend of our daughter – an AG doll when she was in NYC the year before.

And so it started. Walking the streets of NYC, out of the corner of my eye, I caught the red awning and overall ‘pinkness’ of the three-story American Girl emporium in Midtown Manhattan. My husband saw it too and despite our best efforts to distract our daughter and guide her line of vision away from the store, she noticed it. And started jumping up and down.

‘American Girl! American Girl!’ she squealed. ‘We HAVE to go in.’ And without waiting for us to agree, she stormed through the doors. ‘Oh-Em-Gee,’ she announced. I cringed.

We walked the three floors of the store in delight (the kiddo) and terror (her parents). I started calculating currency conversions in my head and worked out that if we bought only one doll and one outfit we could probably keep both our cars and only get one second mortgage on the house.

Of course, there was not only one outfit. Because there were also accessories, books, shoes, jewellery and a matching outfit for the kid. (Thankfully, there were no ‘But I want a pony!’ demands from our child, unlike the kid near us who was throwing a tantrum and cursing her mother as the ‘WORST MOM IN THE WORLD I CAN’T HAVE A PONY. NOW’ (Possibly, her name was Veruca Salt.)

Our daughter picked out a doll that had long, dark-brown hair, dark eyes and no fringe. She named her Iris. ‘I want her because she looks like me,’ said the kidlet. And she was right; she kind of did. We walked all around New York with Iris, and people in the street would comment that they looked alike. Our daughter smiled proudly.

We retuned to Australia with Iris and her wardrobe of outfits and accessories, and she became the favourite toy – and has remained that way.

When we decided on a return trip to NYC, the kidlet spent all her planning time working out how many times we would visit AG. She saved her birthday money and worked out what she would buy and announced to everyone that the reason we were going to New York was to go to American Girl. (Please know, that is NOT the truth. The reason we are here is to visit Doughnut Plant. Of course.)

So, we arrived last Wednesday and on Thursday, we walked through the revolving door, the kidlet squealing again.

This time, knowing what to expect, I spent the time really looking at all the dolls and the accessories. I actually quite like the back-stories to some of the dolls – it’s an interesting and fun way to introduce kids to different periods of history.

We looked at the accessories and outfits. And there, amongst the dance, soccer and karate uniforms, roller-skates, doll-sized musical instruments, equestrian gear, camping equipment and skis, I noticed a wheelchair, crutches, a hearing aid and seeing glasses.

American Girl dolls come in every hair colour and style, they have different colour eyes, some have freckles, and they have different skin tones. Most girls can find an AG doll that looks just like them, and the boys can find a look-alike Bitty Baby.

Dolls can be customised to look and BE just like the kid who it belongs to. And that’s kind of cool.

‘I wish there was an American Girl insulin pump and CGM. Then I would buy one.’ I said. And you know what? I totally would.

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Samantha (on the left) and Iris.

 

Dear Diabetes

This afternoon, I am putting on my ‘out of office’ message which means that anytime someone emails me, they will be told to go away and leave me alone that I am on leave for six weeks and I won’t be answering their message. There is no other admin task I enjoy more than clicking the ‘save’ button on this message.

I was hoping that in the spirit of the season and because I am more than just a little tired at the moment, that you might be a pal, and perhaps put YOUR ‘out of office’ message on too. For the next six weeks, how about you take a little holiday from me? You don’t need to go far, in fact, you can even come with me on our family holiday, but only if you promise to behave yourself and not get in the way.

I know you’ve been busy this year with…well…messing with my mind and blood sugars and sending me into the depths of burnout, so maybe having a few weeks of quiet time will be good for you.

If you are looking for some ideas of how to keep yourself busy, I have a few for you:

  • Instead of spending days at a time on rollercoasters, how about you just stay still and quit the highs and lows for a week?
  • Sleep through the night. No waking at 3am after having plummeted to ridiculous lows, or nose-bleed-enducing highs.
  • Be nice and kind to me, remembering that even though I haven’t been looking after you as much as I would like to, I’m doing my best. And I promise that I will do more if you give me just a little breathing space.
  • Read the rule book. Learn the rules. Teach them to me. Stick to them. For ever and ever amen.

Having time off is a really great way to recharge your batteries and get ready for the New Year. After your holiday, you can come back and we can work together again.

Your ‘out of office’ message is a little different to mine. All it has to do is deliver a beautiful number between 4 and 8 on my BGL meter and a CGM line that is straight and in target. Nice and smooth does it. All the time. Even when I spend the day eating nothing but doughnuts from Doughnut Plant. Which I will be doing. A lot.

My ‘out of office’ message will tell people that I will be checking email infrequently. How about you do the same, take a break and only pop in occasionally too? I promise to be nice to you when you do. I promise to pay attention to you if it’s just a short visit.

I would really like a holiday, some time away with my family to explore New York and spend time with friends. It would be lovely if you let me do that.

What do you say?

Here’s hoping!

With affection from the bottom of my pancreas,

Renza signature

This week, I wrote a personal piece about an extended bout of diabetes burnout. (Whoa – that’s a lot of words with ‘…out’ in them….)

I have been overwhelmed by love and support from the diabetes online community, and people outside the community as well.  Seriously, completely and breathtakingly overwhelmed – and wish I could reach out to every single one of you who has reached out to me to thank you and give you a Nutella cupcake.

I wrote about this for one simple reason – it is my real life with diabetes, and that is what this blog is meant to be all about. Sugar-coating (ha ha – whatever) life with diabetes does no one any good and there is no point pretending it is all fun and games.

Talking about the times things are going well is really easy. Being humorous and looking at the bright side is easy too – and as a person who really does usually see her (champagne) glass/coffee cup as being half full, it is easy for me to seem positive about things all the time.

But the problem with that is that we don’t talk enough about the tough things. And that leads to feelings of shame, which, in turn contributes to stigma.

One of the reason I am such a huge supporter of the Australian Centre for Behavioural Research in Diabetes (ACBRD) is because, apart from being a bunch of fabulous, smart, funny and lovely people, their work means we are talking about the emotional wellbeing side of diabetes. Thanks to the immense body of work they are doing, diabetes is being seen as far more than a numbers game. The quality of life implications of living with this chronic condition are being considered and we are getting a better understanding of distress, anxiety and depression that is related to diabetes. Even more importantly, we are talking about it. And even more importantly, there are strategies being developed to address these things.

I’ve been writing about mental health and diabetes – and wellbeing and diabetes – for some time now because we need to be able to discuss it freely, free from judgement, devoid of stigma.

It’s the same reason that I have written so openly about my miscarriages. I don’t do it because I want people to feel sorry for me or pity me. I do it because it is part of my story. And I do it so that others can see that it is a perfectly normal thing to happen and that there is no shame in it. After I had my second miscarriage, my mothers’ group met. We were sitting around in someone’s living room with our young kids toddling around, playing quietly. It had been a while since we’d caught up and we were going around saying what we’d been up to.

‘Oh, things are their usual crazy self,’ I said. ‘But I had a miscarriage last month, so have been dealing with that too.’ It was the first time I had told anyone, apart from my immediate family and very close friends.

One of the other mums looked up sharply. ‘What? Why didn’t you say something? Why didn’t you let us know? I had a miscarriage three weeks ago. I don’t know anyone else who’s had one. I really need to talk about it, but didn’t know who to turn to. I really wish I had known.’ And she burst into tears, coming over to give me a hug. We sat there and discussed our experiences and how we were feeling and how we were dealing with things. We both felt guilt and shame. We both felt we had somehow failed ourselves and our partners and our families. We both felt the same way – yet were telling each other that we were wrong to feel that way.

It was at that point, I decided that I would no longer hide my story. Because hiding it – when I am usually such an open person – suggests it is something to be ashamed about. Because that’s what happens when issues go underground, we feel shame. I don’t want any woman to feel ashamed because she has had trouble carrying a baby. I don’t want any person to feel ashamed because they are feeling overwhelmed or depressed or in distress because of their diabetes.

There is no ‘fault’. And there should be no guilt. So when we open up and talk about the not-so-good things, we see and accept that this is part of life. It normalises things. It allows for open and easier discussion. And it helps us connect with others who are sharing the same experiences.

Because I can promise you, my story of burnout is not unique. Absolutely not.

I’ve decided that my two favourite words in the world are not ‘coffee, please’ or ‘shoe sale’. No. They are ‘me too’.

 

CS lewis

Apparently, it’s snowing in New York! So the Brian Setzer Orchestra, live at the Rockefeller Centre with ‘Winter Wonderland seems more than a little appropriate today!

Clark TerryLast night, my husband and I saw a documentary about jazz great, Clark Terry. The fim is called Keep on Keepin’ On and I would urge you to see it if you can. Terry, a trumpeter from Arkansas, played with jazz legends including Dizzy Gillespie and Count Basie and influenced other jazz greats such as Miles Davis and Quincy Jones. He has been a prominent educator and a presence in the jazz scene since the 1930s. Just this week, Wynton Marsalis paid tribute to Terry in this beautiful post on his Facebook page.

I knew very little about Terry before going in to see the movie, but I was briefed on a few key highlights of his career and some detailed anecdotes as well. (This is what happens when married to a musician with an encyclopaedic memory.)

What I didn’t know going into the movie that Clark Terry has diabetes. I am not sure what type – no specific mention was made in the movie – however his wife Gwen said that he had lived with diabetes for over 60 years. I wanted to stand and applaud at that point, but figured the Cinema Nova movie-going crowd would not appreciate, nor understand, the ovation.

The documentary was gorgeous and showed Terry’s talent and generous spirit. A significant part of the film followed one of Terry’ students, a young pianist, Justin Kauflin. Kauflin obviously has a great deal of admiration and respect for Terry, but that was returned in spades by Terry himself. And one of the things that connected the two – apart from the music – was they are both vision impaired – Kauflin is blind due to a rare eye disease and Terry has significant vision loss due to his diabetes.

The film was mostly focused on the last four years, although there were lots of incredibly flashbacks of Terry’s impressive career (including this – you have to watch this!). In recent years, Terry’s health has declined and recently, he had both legs amputated below the knee due to wounds in his feet that would not heal – of course, this is a complication of diabetes.

I thoroughly enjoyed the documentary, but there were times I was in tears and found it really difficult to watch. I love the way that diabetes was portrayed in the film – it was not sensationalised at all. But it was still tough to watch.

Seeing diabetes complications playing out in someone’s life is a difficult thing. I cried when he was given the news that the treatment he had been undergoing to treat the wound in his foot had not worked and the only option remaining was amputation. The same thing happened with his other foot. I cried harder when he was telling his wife just how much pain he was in. But mostly, I cried when he said he wanted the surgery to work. His determination was startling to me – he just refused to give up because he feels he still has so much to give – so much to offer young musicians.

When we left the movie, I said to my husband that there were parts that were really tough for me. But he reminded me that Terry has lived with diabetes for 60 years. That’s a long time. A long, long time.

Clark Terry turns 94 on Sunday. His contribution to jazz music is clearly significant. He is recognised as a pioneer and has appeared on over 900 recordings. He did this all with diabetes. And although he no longer performs, clearly he is continuing to make a difference in his chosen field. Diabetes hasn’t stopped him.

Keep on Keepin on

Pretty much anytime I see a movie at Nova, I head across the road to Readings – often to buy the movie’s soundtrack! But last night I was looking at their Christmas music CDs. I really wanted the Neil Diamond album (most obviously called ‘A Cherry Cherry Christmas’) but was outvoted by those with taste. Vince Guaraldi’s ‘A Charlie Brown Christmas’ won out. My favourite tune on the album is not a Christmas song at all, but it is fun and joyful and I love it! Here’s Linus and Lucy.

I’ve been thinking a lot about diabetes burnout lately. A lot.

I have been burnt out for a long time now – it’s been 18 months. I can see how it started – I know the trigger. I miscarried in terrible circumstances and, after the constant monitoring and intense management that comes with trying to get pregnant and then conceiving, losing the baby allowed me to ‘take a break’.

I’ve not come back from that break.

My question is this: When does it stop being ‘diabetes burnout’ and become something more? And what is the ‘more’?

We use the term burnout so much in diabetes; I feel that I’ve become a little desensitised. It’s the norm – most people go through periods where they are so unmotivated that they can’t deal with their diabetes, or pay less attention than they typically would. But how long is ‘normal’? How long can we go on like this?

My burnout is scaring me because it has been going on for so long. I fear I’ll never get my mojo back and actually get to a point where I am able to care for my diabetes in a capable way.

I go through periods of so few BGL tests that my meter resets itself. I have not seen my endo for far too long and I’m way behind in my complications screening. The only thing I am up to date with is eye screening because I had cataract surgery in the last twelve months.

A button on my pump has been playing up for over 3 months – half the time taking three or four attempts to get it to work – and instead of getting straight on the phone to the company’s customer service team and organising a replacement, I let it slide until Monday, when I realised that next week I am getting on a plane and going away for 6 weeks and if I don’t get it sorted I’ll end up with a dead pump while overseas.

I’m taking my insulin, although haven’t basal tested for a long while and know that the rates need adjusting. I ‘blind bolus’ a lot of the time. Wearing a CGM is useful because it gives me an idea of my glucose levels, but I don’t actually do anything constructive with the data I am receiving.

I keep in touch with the online community which is my link to seeing and hearing how others are coping. While I don’t participate in every week’s OzDOC chat, when I do get there I feel supported and know that I have people to turn to if I need them. I guess I’m not completely disengaged.

A nasty hypo often gives me a shock and I get a few days of decent and frequent monitoring out of it, but this is short-lived and I fall back into minimal self-care pretty quickly.

And I feel totally and completely shit about the whole thing. And guilty. Of course I feel guilty.

In a couple of years of some pretty difficult stuff, diabetes is the thing that I can let go of. At least, I feel I can. I mean, I can’t stop being a mum.  I can’t stop being a wife, daughter, sister, friend. I can’t stop coming to work. I can’t stop doing the things I need to do to be a functioning human. But I can stop with the self-care.

And because I am an idiot, or in denial, or just plain over it, I can’t see just how short-sighted this thinking is. I may be getting through the day and doing all those things that I tell myself I can’t stop doing. But how is all that going to work if something actually does happen as a result of my minimal self-care?

I honestly don’t know where to go from here. I feel paralysed and unable to make decisions that I know may help me start with some baby steps to get back on track. Is it a matter of re-engaging with my HCPs and talking to them for strategies? Do I try to set myself tiny goals, like a morning BGL check each day – or even every second day – that is achievable and will start to give me some data to work with? Do I go back to seeing a psychologist again and discuss ways to get back on track?

I don’t know.

It all seems too exhausting. It all seems too damn hard.

Is this burnout? Or is it something more?

I really don’t know.

This isn’t really a Christmas song, but I still think it’s a good song for this time of year. The wonderfully gorgeous Joni Mitchell and River.

‘Okay, so I’ll deal with the diabetic who’s just been brought in. She’s been in here four times in the last couple of months. Completely non-compliant.’

Whoa!

I was walking through the rabbit-warren-like corridors of the Epworth Hospital and passed a nurses’ station at the exact moment those words were spoken, stopping me dead in my tracks. If I was in a Warner Bros cartoon, there would have been a dust and smoke cloud around me as I screeched to a halt.

Move on, Renz,’ said the first voice in my head.

‘Not freaking likely,’ said the louder voice.

I turned to the nurses who hadn’t noticed me yet.

‘Hi,’ I said. I was trying for sweet and polite, but could already hear the patronising tone in my voice.

They turned and looked at me.

‘Um. I just wanted to say a couple of things. Calling someone a ‘diabetic’ isn’t helpful for anyone. It labels them as their condition and I’m pretty sure that the person you are referring to is a lot more than her insulin problems. Secondly, non-compliant is a really nasty term. I’m guessing that you’ve no idea what else is going on in her life – I have no idea either – but I am pretty sure that there is a reason that she is not managing her diabetes as well as she’d probably be hoping to. Non-compliant suggests that it is a deliberate ploy to make herself unwell – which it may be and if that is the case, then that is something that needs to be addressed.’

At this point, the nurses were just looking at me with a mix of surprise, suspicion, annoyance and interest.

‘Also, to be compliant means following a defined set of rules or guidelines. Diabetes has a funny way of mocking such an idea. The rules keep changing – without notice.

‘Now, I am hoping that you wouldn’t use this language around the person you’ve been referring to when you are actually in the same room as them, but here’s the thing. You’re saying those words now, and that means that somewhere deep inside (or, probably just on the surface) that’s how you really feel.

‘No one wants to have diabetes. No one wants to be in hospital. No one wants to be so overwhelmed by diabetes that they don’t – for whatever reason – manage their condition the best way possible. But sometimes, it gets like that. The never-ending relentlessness of diabetes can be so debilitating that all self-care stops. And then, sometimes, you wind up in hospital. Four times in a month, sometimes.

‘I have diabetes. I’ve been that person you are speaking about. But I wasn’t being non-compliant. I just couldn’t cope. And I felt really bad and guilty that I couldn’t cope. So on top of feeling crap about my diabetes, I also felt crap about not looking after my diabetes.

‘So. Maybe think about what else is going on in her life. She is more than diabetes (that’s why calling her a ‘diabetic’ isn’t a great idea) and I bet she is going to respond a lot better to some kindness and concern and perhaps a suggestion she see a psychologist if she’s not already doing so. Because the judgement and judgemental language is not helping at all.’

I looked at both nurses. I was still using a really calm, level voice, but I could tell that they were a little annoyed. And more than a little stunned. I smiled at them.

‘Okay then. Bye.’ I started to walk off, but stopped and turned back around. ‘Oh – can you tell me how to get to room 18A please?’

 

Right-oh. Next up on the holiday playlist is James Taylor. Have Yourself a Merry Little Christmas.

There was a piece in the Huff Post the other day about things to not ask someone living with a chronic health condition – specifically ‘Have you tried….’

You get the idea:

Have you tried not eating after 6pm to help your blood sugars?

Have you tried to quit sugar? Completely?

Have you tried the drug they were talking about on A Current Affair the other night?

Have you tried giving up coffee? (While I don’t advocate violence, it is perfectly acceptable to respond to the fool asking this question with a sharp slap to the back of the head.)

Sometimes the ‘have you tried’ suggestions are just plain ridiculous. In last week’s OzDOC tweet chat, moderator Ms Kim came up with this beauty, asking for us to tweet how we would respond.

Tweet 2My take on comments like this is to roll my eyes and try to change the subject. I don’t believe there is any malice in someone making these suggestions; they really are trying to help. They want to help.

It’s what it represents that pisses me off a little. My diabetes management is not for up public tender. I manage it in a way that I see fit. I will ask if I need help. Actually, I’m not great at asking if I need help, but that’s not the point.

It is as though having a chronic health condition is a ticket for everyone to offer their ideas and suggestions. I’m fairly certain I’ve never asked people to workshop my diabetes management and I certainly haven’t sought to crowd source ideas for helping me out. And yet, it feels like it’s a public free-for-all at times!

I am sure that this is the same for people living with conditions other than diabetes. But with diabetes, perhaps because there is the link with food, and food is in the public domain all the time that people think they can weigh in. It doesn’t help that there are twits like the frequently-mentioned-in-this-blog-because-she-infuriates-me-so-much-and-is-a-dangerous-tool, Sarah Wilson, and the equally-derided Pete Evans who have mega-huge megaphones that reach a lot of people and feel that their pseudo-science programs are a good way to treat chronic health conditions. (Spoiler alert – they are not.)

For some people, the most difficult thing about living with diabetes, is the way that the public perceives the condition. While I seem to not get too hot under the collar about the public’s perception, I do understand how tiring some people get at the constant comments about diabetes, the misconceptions and how others want to get involved.

Diabetes seems to be rather unique in this sense. That public ownership of a condition that is a significant public health burden is certainly annoying at times. It’s similar to people commenting on the size of a pregnant woman’s belly (or overall pregnant body). Because it’s a bit ‘out there’ some think it’s okay to offer comment or offer suggestions. When I was pregnant, I was standing at the counter of a juice bar at the Queen Victoria Market and a man I am quite certain I’ve never met before, put his hand on my belly and told me that I was ‘a good size.’ I asked him to remove his hand and suggested that he mind his own business. Or at least buy me my pineapple juice if he wanted to get involved.

Finding ways to deflect comments without appearing ungrateful or rude can be tough. I know people want to help. But there is no curing diabetes and there is no magic potion that is going to make it better. It is sometimes a little insulting when people suggest things – especially things that are clearly straight off the snake oil shelf. Most who know me should realise that I am pretty linked in with what’s going on in the diabetes world. Do they really think that I could have missed that cure?

I (hope I) have a long life ahead of me and as it stands, that life is going to be shared with type 1 diabetes (well, at least for the next five years). I accept this and know that it is my lot in life. It would certainly be easier if people just didn’t think that it was public property and they had a free pass to comment.

I really hope I don’t sound ungrateful. Or rude…

By the way, this is how I responded to the OzDOC zinger from last week: Tweet1

Because it’s so true. There ain’t no curing stupid!

Okay folks, it’s December. And my treat to you for the next couple of weeks is to provide you with fabulous Holiday songs. (I say Holiday not because I don’t want to say Christmas, but because they may not all be Christmas Carols.) Hold on – you’re in for a ride. Our Holiday album collection is certainly eclectic!

So, today, I’m starting with one of my all-time favourite musicians, John Pizzarelli singing Let it Snow.

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