The number of tests?

“How many times do you test per day?” this was the question put to me this morning by the Accuchek Guide rep while I was trying to replace my meter. “About twenty,” I replied adding that my blood sugar can tend to be volatile. The rep murmured a sympathetic sound. But I wondered what she really thought.

I know what my Endo thinks. He’s mentioned to me on more than one occasion that I am obsessed with checking.  Do I really need to wake up throughout the night to check? Ummm…YES!  It’s not like I set an alarm or anything, I seem to naturally wake up between 1-3 times per night anyway so why not check?

Overnight lows are the worst. In the days before I had the whole diet thing mastered I’d wake up and have to eat at 2 am. Nothing worse than sitting by myself in the kitchen watching the clock tick over while I wait for my blood sugar to rise.

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And what about in the day? Do I really need to check every hour? I actually don’t check every hour, it depends on whether I’m insulin resistant or have had some sort of injection blunder. Most mornings I can go from breakfast to lunch without even checking. I know my liver is doing its thing, dumping some extra glycogen into my system so it’s rare for me to drop. It’s usually between 12-5 pm that I like to be vigilant. I can never seem to get my lunchtime bolus right, and then there might be some extra exercise thrown in the mix around 4 pm.

Checking vigilantly when you live with Type 1 Diabetes is a make or break situation. Especially if you can’t tell when your low. Its called hypo unawareness, it happens when you have too many lows and the body stops recognising the feeling of being low. Like my horrible hypo two weeks ago, before I knew it I’d dropped to 3.2 mmol. Scary!

It was also after that horrible hypo and sharing it here that some friends encouraged me to use a CGM (continuous glucose monitor). This is something I would love to have but sadly here in Australia there is no subsidy for someone like me. To be eligible for the Dexcom or Medtronic CGM you have to be hypo unaware and admitted to hospital more than once or under the age of 21.

The Freestyle libre flash glucose system is also on offer here, but this has no subsidy at all. I have written before on the blog about how much I love this product. Sleek, discreet and accurate using it has increased my peace of mind and saved my finger tips. I’ve attended  product launches and #dx2Melbourne and can honestly share the company, its ethos and care are palpable. I’ve even lobbied the government to make access affordable for people like me and had a small feature in the Noosa News. In spite of my passion and efforts, I still can’t justify spending $100 every fortnight.

But wait ho… my wonderful parents, after reading my blog, gave me the best early christmas gift ever! A 6 months supply of the freestyle libre. I am touched and grateful.

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Here I am ready to launch. So excited to have some time off from the drudgery of test strips and the ability to see whats actually happening minute by minute with the food I am eating, the insulin I am taking and the sleep I’m sleeping. I’ll probably put one in starting next week so stay tuned…

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

Dance 4 Diabetes

There’s a picture of me performing in a dance piece somewhere in an old photo album in my storage. When I think about that picture I think about a life time ago. Pre diabetes, pre marriage, pre child, pre yoga.

Being a professional dancer was a childhood dream. By the time I was twenty one I had performed, taught and choreographed in dance companies throughout Australia. There was a moment though where I came to a crossroads. I decided that if I wasn’t going to get into the company of my choice, which at the time was the Australian Dance Theatre, I was going to call it quits. I auditioned, didn’t make the cut and was devastated.

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Me dancing at 22 on the far left in Tasdance

I gave up and devoted myself to yoga, but my resolve didn’t last. Eventually I was asked to teach, choreograph, perform and serve as the Head of Dance at a local performing arts college. It was around the age of 35 that I hung up my professional dancing hat for good. Not because I wanted to but more because the demands of my job as a yoga teacher took over.  Living in NYC at the time and having to support the family meant there was only so much time for ballet classes and auditions. It was a reluctant decision, but I have no regrets. Sometimes the things we think we’re born to do turn into the things we are called to do. For me that’s yoga. I never asked to teach and share yoga but here I am.

Just before my diabetes diagnosis dance had reappeared in my life. I did a healing retreat which included dance as therapeutic release. It felt incredible to move again and I loved how the movement wasn’t about impressing an idea on anyone ‘out there’ instead it was about what was longing to come out.

To dance is to free oneself of grief, expectation, anger. A return to joy, freedom and peace.

When I saw this months campaign from Diabetes Australia, dance 4 diabetes I got excited. Now here’s something I’m good at and can get behind. Dancing takes the difficulty out of diabetes, it’s uplifting, inspiring, motivating, fun and good for blood sugars. It reminds us to be light hearted in the face of it all and inspires community and support. I love seeing people share their love of movement while shedding light on such an important cause.

The campaign motto is: Stop what you’re doing and dance! Then donate and dare (share) by tagging three friends and asking them to dance, donate and dare too.

Fun right? Here’s my entry below and the link to join Dance4Diabetes


See you tomorrow and happy #WorldDiabetesDay for my US friends!

#NDAM #DiabetesAwarenessMonth

With great respect…

rachel

World Diabetes Day…again

Today is World Diabetes Day and to be honest I’m flat.

The fire emergency here in Australia combined with higher blood sugars have kept me from my usual enthusiasm. But it’s not just that. It’s hard to put a positive spin on diabetes all the time.

All I can say is my daily yoga practice pulls me out of the doom and gloom. It reminds me that as much as I like to get lost in the details around my health management it’s never going to be perfect. Control is necessary but there has to be some wiggle room. Giving myself a hard time isn’t productive. I’ve learned to relax in the tougher poses, to breathe deep and find stillness. These mini lessons are perfect metaphors for the ups and downs of this disease. And believe me I need that right now.

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Today marks the birthday of  pioneer Frederick Banting and as such celebrates the discovery of insulin in 1921. Before 1921 they didn’t even know what insulin was. Every time I think of this I’m gobsmacked. 1921 is not that long ago yet I take so much for granted when it comes to all the available medication and tech. Here in Australia there is subsidy for our medication and equipment. I am stunned that this isn’t the case in other countries. No one should have to pay for life saving medication!

Luckily there is an initiative out there to help those in need. Its called Type 1 International and their mission is to support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all.

Please join me today on World Diabetes Day in supporting this wonderful organisation.

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

The one truth that can’t be faked

I have been obsessed with Twitter since September. Growing up in the United States in a liberal democratic family means I have a keen interest in U.S. politics. The election in 2016 floored me and I have watched the steady decline of ‘the facts’ over the ensuing three years. Not that facts are all they’re cracked up to be. Think about it, as much as science claims a finding to be reality that same theory can also be disproved. Guaranteed change is a constant. That doesn’t mean we shouldn’t aim for justice and liberty and all those other principles though. It pains me to see so much division, hatred and frustration emerging in a country where I was taught that no matter what your circumstances you could achieve the fulfilment of your dreams.

In a new paradigm of ‘alternative facts’ it’s hard to know what to believe, who to trust and what’s real. With all the fake news out there I’d like to note there’s one truth that can’t be faked.

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Diabetes.

Diabetes is a fact. Pancreatic beta cells have tanked. Insulin is required. Life is on a knife’s edge.

I can remember thinking early on after my diagnosis that there must have been a mistake. Maybe the lab messed up my blood tests. I wasn’t the type to have this disease and I was so healthy. A few health care providers even corroborated my theory. Even as late as 2008 some practitioners in Australia didn’t know that out of the 40,000 people diagnosed each year with type 1 diabetes, 50% are adult onset.

Fact: “According to the ADA, 1.25 million Americans have this disorder. This is about 5 percent of all diagnosed cases. The ADA estimates that 40,000 people receive a type 1 diagnosis each year in the United States.” Source: Healthline

Swallowing this fact has been a total reality check. Coming out of denial changed everything.

When it comes to chronic health issues especially ones that are invisible it’s hard for people to validate or understand our struggles. Keep in mind it’s not up to anybody else to verify what we are going through. Empathy and compassion is a powerful ally but in the end when the bugger’s hunkered down and immovable. What to do?

Flush out the tiger!

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It’s only through coming out and spreading awareness that truth can come to light.
It’s why I’ve been posting relentlessly here and all over social media. Plus writing about diabetes is therapeutic. It gives a voice to my inner world.

It’s also how I feel about the state of the union at the moment. Lets get it all out in the open. Let’s get to the bottom of this whole debacle. Let’s see the naked truth.

Once you know the truth about anything you’re free.

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

The humble test strip

Something that bears the brunt of many jokes in the diabetes community is the test strip. If you haven’t a clue what that is. No worries, I’ll explain.

The test strip is a very small yet essential item for anyone living with diabetes. In order to keep blood glucose levels in check you have to take regular measurements with a blood sugar measuring device called a glucometer.  Even if I wear a CGM (continuous blood glucose monitor) which measures blood sugar through an implanted device, I still need to calibrate my CGM or double check that the reading I’m getting is accurate. Especially in an emergency. Nothing worse than getting a false reading on my CGM and treating it with either insulin or glucose and then having either a low or high. Sound complicated? Not even the half of it.

Anyway I digress…

The test strip is inserted into the Glucometer, I prick my finger with a lancing device, place a minute amount of blood on the test strip and within 5 seconds I see the reading on a screen. Then I take the test strip out and supposedly dispose of it. The big question is where? One lone strip usually lands in the side pocket of my meter case, eventually 1 becomes 50 or 100 and before I know it little tiny test strips covered in droplets of red blood are literally falling out of my meter every time I open it. Too lazy to throw them in the rubbish I put them back in the side pocket only for them to fall out again the next time I go to test my blood sugar.


Stray test strips end up in car seat crevices, on the floor, in the bed, in the toilet, on the pavement, in my hair. I’ve even found a test strip in my soup. Yuk!

Getting the test strip out of the little round container in the middle of the night in the dark is also a total drag. It’s bad enough having to get up to test my blood sugar but then when I waste a strip putting it in upside down and back to front… total headache! Plus if I don’t get enough blood on the strip the machine tells me I have to test again. That’s another waste of a strip.

Strips are made of plastic and as far as I know non recyclable. In fact most of what we  use to manage diabetes is non recyclable. Talk about feeling guilty every time I test or inject. I just wish someone could invent a recyclable paper, bamboo or hemp test strip. In fact why not invent insulin pens, needle cases, devices out of hemp plastic or some other compostable equivalent. Anyone want to start a movement ?

The test strip is also a conversation piece. ” What’s that? My aunt has diabetes. How many times do you test? Does it hurt?”

The test strip is certainly not something to be undervalued or ignored. Before the test strip made its appearance on the world stage, the only way to know what your blood sugar reading was was to use a special solution mixed with urine then boiled to get a rough sense of the levels. Eventually  a urine test strip was used and by the 80’s there were home test kits like the one pictured below, but it took 5 minutes to get a reading.

Screen Shot 2019-11-08 at 5.13.53 PMThink about it, before the invention of insulin and diabetes technology we didn’t know what we had. how to manage it or even how to stay alive. The humble test strip for all its foibles, annoyances and character flaws is an absolute life saver.

I for one will never leave home without it!

See you tomorrow for #NDAM #DiabetesAwarenessMonth

With great respect…

rachel

P.S. Check out the amazing Miss Diabetes and her latest cartoon about how to test your blood sugar here

Sailing unchartered waters

Today I’d like to share for Diabetes Awareness Month, a bit more about how diabetes affects the nervous system and why yoga is so beneficial.

Imagine…you’ve lost a ton of weight, been super thirsty, you can’t stop peeing and your exhausted. You know somethings wrong but you can’t quite put your finger on it. Then BOOM you are in the hospital hooked up to drips and on the fastest learning curve of your life. Your family and friends can’t believe it and neither can you. Or if you’re like me, you find out from your GP that your blood sugar is not in range as it should be and it looks suspiciously like diabetes. Whether you have a sudden diagnosis, or gradual diagnosis, the shock to the nervous system is the same.

Your life as you knew it is gone. Without any prior skills to rely on you have to navigate dangerous medication (too much or too little could put you in a coma or kill you), change your diet and exercise habits and possibly even rethink your vocation. From the moment you wake up till the moment you go to sleep and even through the night, vigilance is key. Diabetes technology has definitely reduced the burden but it isn’t a cure.

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Every single day the body is in hyperdrive at some point or other. It’s especially notable when it comes to low and high blood sugars. As I’ve experienced since my horrible hypo less than a week ago and my rebound high which keeps on keeping on, being in range and giving my nervous system the chance to rest and regroup has been just that little bit more out of reach.

Autonomic nervous system dysregulation (spending more time in the fight or flight reflex and not being able to calm down and rest and digest) can be the cause of more erratic blood sugars. So taming the beast is always the first order of business. I.e lots of breath work, restorative yoga and other nervous system balancing modalities.

One of the quickest and most specific tools I use is full complete breathing. This calms and soothes, enhances digestion, massages all the abdominal organs and gives the mind a focus out of its habitual tendency to identify with conscious stressful thoughts. When we have an extreme low or high it’s is not necessarily something we tap into consciously, having a quick fix on hand that can be done anywhere, is invaluable.

Just like I used the Ujayii breath to calm me down during my low, full complete breath can be practiced at any time. It’s even helpful when you’re not in a stressed state . It can be done lying down or sitting in a chair. You can even spend some time with your hand on your belly while standing if you can’t get into the other positions. The more tools we have to bring our nervous system back to balance the easier it is to navigate future challenges and teach the body to do what it’s designed to do, relax.

Below is a short video where I share the practice. Give it a try and let me know how it feels.

See you tomorrow

with great respect…

rachel

The perfect injection

I was one of the lucky ones, or so I thought. When I was diagnosed with unusual blood sugar levels in 2008 I was told by my doctor that we would take a wait and see attitude. Waiting meant me measuring my blood sugar levels with a glucometer twice a day and having quarterly blood tests to see if there was either a reversal to normal levels or an escalation. Seeing was about hoping that I could reverse the symptoms through diet and exercise.

Looking back I’m not to sure how this ‘wait and see’ approach made me lucky. ‘Waiting’ meant I could go into further denial and ‘seeing’ took me into untold distress. When my doctor finally made the call  to start insulin therapy after acknowledging that what I had was a late onset form of Type 1 diabetes, I cried for two weeks straight. Not because I was worried or fearful (which by the way I was, no one wants to be dependent on medication for the rest of their life) but because I was relieved. Relieved that I had a diagnosis that made sense and that I would have control of my health again.

Up until that point taking insulin was my biggest fear. How would I travel having to carry meds with me everywhere, what if I reacted to the chemicals in the insulin, what if it didn’t work.? My doctor assured me that I would feel a whole lot better once I started injecting. He was right. It took 6 months for my levels to return to ‘normal’. Insulin doesn’t cure diabetes, or solve the problem, but it does alleviate the issue of not being able to assimilate food . When the body doesn’t produce an essential hormone you have to get it in there somehow.

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One of the first things I learned from my diabetes educator was to rotate injection sites. The reason being if I constantly inject in the same place that area starts to form scar tissue making it harder to absorb the insulin. Also the injection site changes the rate of absorption. I started by injecting in the fat layer on my belly, then after meeting friends who lived with diabetes I learned to inject in the fat tissue on the sides and lower back. Recently I’ve started injecting in the top part of my bum. I still haven’t worked up the courage to try my upper outer arms or outer thighs, but I’m getting there.

The hardest thing to remember is where I last injected so I switch sides. Left side of my belly in the morning and right side in the evening. Basically I feel like a pincushion covered in bruises. I like to think of them as a battle scars, a fight well won. Those bumps and bruises show me I’m still alive. I don’t begrudge taking insulin one bit. Taking insulin is a privilege. Before the discovery of insulin, diabetes was a death sentence.

What I’d really like to see out there in terms of help in rotating sites is some kind of way to make sure I’m injecting in a different spot each time. I’ve seen an idea for a temporary tattoos for kids  and there’s a grid you can use, plus apps and charts. But to be honest all these options hasn’t solved the issue.  One of the best options I’ve seen is placing a teeny tiny temporary flower tattoo after injecting, so eventually your whole belly looks like a garden. Sounds fun right?

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In spite of the daily dilemma I have around injecting, life goes on. Initially, I felt nervous and awkward, and unsure as to whether it would work at all. It was my doctor who reassured me, “you know in a little while you’ll forget you even struggled with this part of it. It’ll be as automatic as driving a car.”

And you know what? As much as injecting can be a literal pain in the ass, he was right. As I dial up the dose and inject that sucker I know everything is going to be okay.

see you tomorrow

with great respect…

rachel

I have diabetes, so what

Today ‘diabetes’ was the big topic of conversation amongst everyone I spent time with. I love how friends are curious about how I manage my daily life with this condition. I enjoy clarifying the differences between type 1 and type 2 diabetes, why we take insulin or sugar and the ins and outs of daily management. There are many diabetes myths out there, like people with diabetes can’t have sugar, or we take insulin for every situation, whether low or high, or that our diets caused our diabetes.

Diabetes is so much more complex and mysterious than that. It’s a bit like trying to put a square peg in a round hole. What I deal with in my iteration of diabetes is different to every other person with diabetes. That’s what makes it both frustrating and predictable. Living with diabetes means you can rely on its uncertainty.

And don’t get me started on how each person living with diabetes relates to their condition emotionally and mentally. In a recent conversation, a friend with type 2 diabetes stressed how exhausting it felt having to stay so vigilant with daily blood tests and visits to the doctor. In the end her way of dealing with it was to say, “I have diabetes, so what.”

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Listening to her take on diabetes made me reflect on my own approach. I could completely understand her position. Taking anything so seriously that it restricts your life can make you more unwell.

This is where I segway into my personal approach to management. It’s definitely the serious approach, where fear of complications such as loss of vision, amputation, kidney damage,and neuropathy give me the discipline and impetus for strict control. I’ve used my body my whole life to express myself through dance and yoga. The body being my joy meter. I remember thinking as a teenager that if I couldn’t walk, or dance I didn’t know how I’d cope. I feel the same way now as an avid yoga practitioner. I see the body as a powerful tool for health and wellbeing. If you can open, stretch and strengthen the body you can directly affect how you deal with any physical , mental or emotional stressor.

Luckily the daily discipline required of a dancer and yogi has its benefits, I utilise it  to be comfortable with eating the same kinds of foods at every meal, taking approximately the same amount of insulin, walking at a specific time each day, checking my blood sugar often and using yoga and meditation to mange my mindset. When I veer from my daily routine it takes days to catch up. It’s hard for me to experiment and try new approaches even when I know those changes would benefit me. I don’t want to beat myself up about my approach though… I’m fine with it. As one of my diabuddy’s once said,  “You do diabetes your way and if it ain’t broke, don’t fix it.”

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Walking with my friend today we talked about how it feels when I see a positive number on my glucometer or I know I’m doing good time in range. ” Do you feel like you can take a moment to soak in the tone of that feeling? In other words stop and feel how good it feels to know your managing well? ” I absolutely loved the way she put this. If I can acknowledge the good feelings, really soak them in then perhaps those more challenging moments i.e low or high blood sugar freakouts, will be less stressful. I like the idea that even something as stressful as diabetes gives me the opportunity to embrace those feel good vibes and to heal my nervous system.

A nice way to acknowledge that even though I have diabetes, so what.

See you tomorrow

with great respect…

rachel

It’s not up to me

Setting myself the task to write something every day for 30 days about diabetes to spread diabetes awareness is definitely daunting. I live with diabetes for 365 days a year and deal with it 24/7 so it should be easy to articulate that right? In reality the way I deal with diabetes is deeply private.

After spending 6 years ignoring it and then spending 4 years shouting about it via writing a book and being a fierce advocate through social media, it’s been interesting to spend this past year taking a break from the need to externalise my experience.

In 2019 I set a goal to lower my Hba1c, heal some of my underlying digestion issues and be brave when it comes to taking Insulin. I started 2019 using the Diabetic Health Journal, created by yogi and  diabetes health coach Lauren Bongiorno, with incredible results. Writing down daily goals, things I was grateful for and staying accountable made a big difference. My Hba1c went from 6% to 5.6 % in 6 months. If you’re not sure what that means it’s like dropping your cholesterol levels or blood pressure. Moving it from a pass to a win.

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I also went into hyper drive with my digestion, adding different supplements, bone broth and more variety into my daily meals. I worked on stored trauma with network spinal analysis and neuroimmunology sessions. Finally I made sure to keep up a daily walk and my twice daily yoga practice.

Making a concerted effort to shift some deep seated patterns has been an interesting process. I didn’t necessarily make great strides or have major revelations, instead I settled more into accepting what is.

“What is” might not be what I want but if I can accept it that’s a pretty good place to be. It’s how I dealt with diagnosis after fighting it for so long and pretty much how I manage my finicky digestion and volatile blood sugars and everything else that comes my way.

My latest go to phrase for everything is, ” It’s not up to me” That’s not about not doing everything I can to stay balanced. It’s about understanding that I don’t know the recipe of creation.  Letting go of needing to know, enjoying the gifts I’ve been given and trusting that whatever comes is perfect, goes a long way in helping me manage my condition.

I never expected to be diagnosed with diabetes but now that I have been I can honestly share it’s a blessing in disguise.

More on that tomorrow  #NDAM #DiabetesAwarenessMonth

With great respect…

rachel

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6 tips to bounce back from a rebound high

The first time it happened I was clueless. People living with diabetes often talk about blood sugar roller coasters but I thought that just meant highs and lows in a short period of time. What I didn’t understand was that when I go low I also go high and not just right after correcting a low blood sugar. The high lasts for days. My body starts resisting the insulin I’m injecting and I need more insulin to manage the highs which means more risk of lows. When I was a kid I hated rollercoasters and for good reason. They made me feel sick, scared the begeezus out of me and I’d come off the dang thing with a sore throat from screaming my lungs out.

It took quite a few hypo’s for me to work out that the high’s that followed were to do with the lows. At first I just thought there was something wrong with the insulin, or maybe I hadn’t dosed enough. I even speculated that maybe my pancreas had finally hit the dirt and I really didn’t have an ounce of beta cell function left. Because I live with LADA ( latent autoimmune diabetes in adults) I still produce a minute amount of  insulin, this means that sometimes my body squirts out a tiny amount when I first start eating. It also means that if I am already low when I start eating I could go even lower and have a hypo. Not having the recipe as to what my pancreas will do when means there’s a lot of guessing going on. So when I’m high for days on end and doing everything exactly as I did it the days, weeks and months before it feels like I’m in the middle of a crap shoot. Lucky me!

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When people meet someone living with diabetes, the decision making and daily micromanagement is largely invisible. You might see a CGM or an insulin pump, but on the whole it seems as though the whole process runs smoothly.

Here’s what actually goes on most days for me. I wake up, inject. I eat, inject. Go a little below range, take a glucose tab. Go high, take some insulin.  I check my blood sugar every hour to be on the safe side except for at night where I place my faith in morpheus, the god of sleep trusting that the amount I take for my long acting insulin will keep me in range all night. 20 fingerpricks and up to 6 shots a day of insulin is not easy or seamless no matter how doable it is.

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What do I do to deal with the physical and mental blood sugar challenges during a rebound high? Here’s 6 things that have really helped me.

  1. Do some physical exercise which I know increases insulin sensitivity, like a walk with some hills,
  2. Do a yoga practice which works with the larger muscles of the body and includes standing hip openers and balancing postures
  3. Talk to myself in a positive and supportive way when I see a high number on my meter. I.e. This too shall pass, this is a normal response to a low blood sugar, everybody goes through this
  4. Do things in my day that give me joy, like writing, yoga, connecting with a friend or have some hang out time with my husband
  5. Go to bed early, there’s nothing more healing then a good nights sleep
  6. Reach out in the #DOC ( diabetes online community) to find out how my diabuddies deal with the same situation

And if you live with diabetes I’d love to know… How do you deal with a rebound high? Lets start a conversation in the comments below!

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel