I am lucky to be alive

I’ve waited all week to write this post because it’s about time. Time, I threw my hat in the ring for National Diabetes Week to raise awareness about the signs and symptoms of type 1 diabetes.

My personal diagnosis story started long before my actual diagnosis. It began with a sense that something wasn’t quite right with my body. I had always been a frequent visitor to the toilet and had a tendency to be on the thin side. I told people I had an overactive bladder and yoga kept me fit. It took a total exhaustive collapse for me to sit up and take notice. But even then I refused to take action. It was my husband who took me to the doctor and suggested I have some blood tests.

My doctor at diagnosis didn’t have a clue. He shouted the word “diabetes” at me and shoved a few pamphlets in my direction. I remember leaving his office dumbstruck. How could this be happening? Was he for real?

Luckily I was able to see an endocrinologist a few days later. He looked over all my blood work and scratched his head. I don’t think he’d ever met someone in their 40’s as healthy as me with any kind of diabetes. He advised me to get a glucometer and to keep testing. We were to keep on eye on things before drawing conclusions.

With a stricter diet and lots of yoga, I managed to keep my levels in check for at least a year. But I wasn’t out of the woods. A GAD antibody test revealed Islet cell antibodies. That meant the source of my diabetes was autoimmune. I remember asking my doctor if I could reverse it. The slow nod of his head said it all. “As long as your levels stay in range you won’t need medication. But eventually, you will.”

I played the waiting game for 6 more years… waiting for the symptoms to worsen, for the levels to rise. With every blood test, I battled to get my levels down. Then I burnt out. I stopped going to the doctor telling myself I had everything under control.

photo 1
in 2014 at 46 kg, 6 months before I started Insulin and 6 years post-diagnosis

In 2014, I broke down. I started peeing several times a night, I was down to 46 kilos, I’d stopped eating and increased my exercise. Nothing worked but I didn’t give up. As long as I had energy I assumed diabetes hadn’t got me.

Man, was I wrong.

Diabetes had held me in its grip from day one. If only I’d known sooner the ramifications of delaying insulin. How I might have preserved more beta cells. If only I’d understood how much damage high blood sugar causes to the nervous system, cells, and organs. Then I wouldn’t have mild neuropathy or such trouble with my digestion.

It took a crisis to get my attention and a community to bring me back to vibrant health. The moment I started insulin was the day my life changed for the better. I found a thriving community of people living with Type 1 in the blogosphere and on Facebook, Instagram, and Twitter. I reached out, asked questions and informed myself about my condition. As I grew in knowledge, I realized that with better information, more resources and awareness around type 1 diabetes I might have taken action sooner.

My biggest message for anyone out there is to be aware of the 4 T’s  ( Tired, Thirsty, Thinner and Toilet) which can affect anyone with any type of diabetes. If you live with type 2 catching these symptoms early is key. Some people living with type 2 can go up to 7 years before detection. Early detection of type 1 saves lives.

I wish I could say I believe there is a cure around the corner. I am hopeful for sure. but hoping doesn’t change the present moment. For now, cure or no cure. I live with diabetes. I have come to terms with my diagnosis and gone on to live my best, happiest most positive life.

I tell myself every day. I am lucky to be alive!

with great respect….

rachel

IMG_3514

Striving for gold

It’s been a long road. From my initial diagnosis in 2008, starting long-acting insulin in 2014, to finally biting the bullet by adding short-acting this past January,  I’ve reached a milestone. A thumbs up from my diabetes HCP.

I have never put so much hard work into anything in my life. Counting carbs, measuring up minute insulin doses, Intermittent fasting, diligently sticking to my twice daily yoga practice. Staying hydrated, sleeping 8 hours a night and doing everything I can in the middle of a non-stop book launch tour to avoid stress.

It’s been a marathon!

Hearing, “Your diabetes is under control.” didn’t make me hoot and holler or give me permission to drop the ball. Instead, I feel apprehensive. What if I can’t keep it up? What if it was a fluke? Even more pressing is the thought,  “I can do better.”

IMG_3347

But then what? Getting my levels in the ideal range is a worthy goal. As hard as I’ve worked in the last 6 months I know I’d have to work even harder.  The big question right now is; am I up for it? Or… is it okay to paddle for a while?

I’m ready to pause. Pause perfection, pushing, expectation, assumption, hope, striving.  Ready to receive, let love, reflection, acceptance and guidance flood in.

When I was studying ballet in my early teens and starting pointe work  I assumed that the elegance of balancing on the end of my toes would be the ultimate pinnacle. In reality, it was unglamorous. My toes were often bloodied and bruised. I developed bunions and callouses and would wince and limp for days and weeks after practice. I learned over time to distance myself from the physical pain and to shut down any feelings of inadequacy around the shape and strength of my feet. It was in the depersonalization that I mastered the ability to balance and turn. It wasn’t easy but I did it.

DSC01830 copy

I feel the same about living day in and day out with diabetes. Taking a few steps back, a breath, a moment of stillness when I feel everything backing up on me means I can pause and begin again.

Even though I’ve spent the last 6 months striving for the gold standard and achieved it. I’m ready to create and adjust.

That’s the essence of what it means to be flexible in yoga practice. When a posture feels insurmountable, you don’t push to your edge. Instead, you back off, warm up the surrounding muscles and work up to the pose over days, weeks, even months. A slow build yields lasting results.

So instead of cutting back more on my carbs, increasing my insulin doses and watching every mouthful. I’ve got a plan. I’m going to be like the tortoise in Aesop’s fable, the Tortoise, and the Hare.

Slow and steady wins the race.

with great respect…

rachel

TortoiseHare

Grace

There’s a lot of things I am supposed to be doing today. Writing three blog posts, sending out my newsletter, contacting media, calling a friend, organizing my travels and paying my bills. But I can’t.

I’m tired. Not just because I am on a steep learning curve with my diabetes management having added fast acting insulin to my regime, but because it’s too much to be a one person everything.  I wish I could press the slow-mo feature on my iPhone. Life and its pressure are relentless. I ache for simplicity.

When I first set out to write this blog I assumed I’d be sharing tons of yoga sequences, with tips and tricks for making life with diabetes easier. Even though that’s been the main focus, I’ve also realized that blogging about chronic illness and expressing my feelings about what it’s like to live with diabetes are as therapeutic as the practice itself.

When I write I find acceptance and gratitude.

There’s an image I use when things get tough. My yoga teacher gave it to me years ago as a way to let go and acquiesce to circumstances.

I imagine myself on the ground, belly down with arms outstretched at the feet of something greater.  Call it divinity, a deity, the beloved, creation. Whatever I call it for me, that image is grace. I literally “pray for grace”

And even if my prayers are not answered the way I would like I always feel lighter, more courageous and ready to try again.

With great respect…

rachel

Rachel Portraits 2015-96

Diabetes: A total head spin!

I love certainty. Knowing exactly what to expect in a situation keeps me calm. When I don’t know I try to guess… But living with diabetes is different. I can’t really make a guestimate when my life is at stake.

After my first rapid-acting insulin injection a few weeks ago, I had a total meltdown, my blood sugar skyrocketed and I had to make several trips to the loo. It reminded me of one of those dares your friend gives you when you’re a kid like; I dare you to take off all your clothes and run around in the snow or, I dare you to tongue kiss Danny Marsden. You want to do it, but you’re also terrified. What if you freeze your butt off or end up swallowing his tongue!

There were definitely things to be paranoid about. Not getting the dose right, reacting to the insulin, the insulin not working, injecting into a muscle and crashing my blood sugars. Not to mention that the sheer mechanics of getting the shot ready were a nightmare.

IMG_1719

I had no idea you had to prime a syringe, that a ½ unit is a tiny tiny amount so tiny you can hardly see the plunger moving when you push it in and that pulling insulin out of a pen without all the proper handling techniques can make your syringe fly across the room.

It became obvious quite quickly that listening to my CDE tell me what to do and doing it were two different things. In the beginning, there was a lot of insulin wastage. Something I don’t like doing as I am very aware of the cost of this life-saving medication. As those of us living with diabetes know, insulin does not grow on trees!

After two days of trial and error and wondering if it was ever going to work, it did. My postprandial blood sugar coasted up a mere 10 mg/dl and then 2 hours later coasted right back down.  I couldn’t believe it. Working with long-acting insulin to cover meals meant I always went up between 40 to 50 mg/dl after every meal… I’d gotten so used to the spike I didn’t see it as an issue. Even though logically I know it’s those spikes that give me a higher A1c.

IMG_1738

Success didn’t last long, just because it worked perfectly once didn’t mean it worked like that again. The day after my very successful bolus I wrestled with lows. urgh.. the frustration… now I had to wait for my blood sugar to come up again to try bolusing with a meal. I even lowered my long acting to see if that was the issue and then WHAM…the next day blood sugars were too high.

Count carbs, prime needle, take the shot, monitor blood sugar, treat a low, check blood sugar, take a correction OMG! It’s a total head spin.

I am in awe of every single person living with diabetes. I am stunned by how inaccurate the treatment methodology is. No wonder we need diabetes coaches, peer support, better and better technology’s and smarter insulin and did I mention YOGA!

with great respect from the trenches…

rachel

 

 

A work in progress

There’s a blizzard outside and today we’re snowed in. In Rochester, NY where I grew up, we rarely had snow days. Being close to Canada and having snow for almost 8 months of the year meant the city was well equipped to meet extreme weather.

But here in New York state, it’s been snowing in snowballs. It’s been too cold to go outside, too cold to go anywhere and did I mention… it’s frigging cold out there!!! I am not sure what I was thinking leaving behind endless summers but it’s been quite a shock to my blood sugar levels. I really thought I had things down but I’ve realized that my diabetes management is still a work in progress.

In spite of the cold, I went into the city this week to meet with Craig Kasper the creator of the Bravest Podcast. Craig also lives with Type 1 and created the podcast so he could learn and explore what it is that enables people to live extraordinary lives in spite of their Diabetes.

In the interview, we talked about levels of bravery. As our discussion progressed I shared that acceptance continues to be a process. There was that moment of diagnosis, where I felt like I had to swallow a bitter pill, the long years of denial where I kept thinking that controlling my diet and walking up hills would cure me, the moment where I gave myself my first injection through a rain of tears, the day where I knew I needed to change my management strategy by splitting my basal dose and finally yesterday pulling up a ½ unit of bolus Insulin into a syringe and taking the plunge.

26610368_10156107125646410_2138163839_o

Living with LADA (Latent Autoimmune Diabetes in Adults) is no picnic. A friend recently commented that it’s easier to calculate your insulin to carb ratio when your beta cells don’t produce any insulin. Living with LADA is like playing roulette. Some days the ball lands on the money and others I leave the table in despair.

The only way I get through each and every wonky moment is with the varied practices of yoga. I love working with the medium of sound in my practice because sound is so direct and immediately calms and centers me.

Working with sound in Yoga is called Mantra. The word Mantra comes from two words, Manas, meaning mind and Trayati meaning freedom.  A Mantra is a sound, which frees the mind by giving the mind a focus so it’s naturally drawn out of its preoccupation with thoughts, ideas, and beliefs.

I know it’s natural to be obsessed with thoughts about the ins and outs of daily management. In working up to that first bolus injection I would sit down to meditate and replay worst case scenarios over and over.

That thought loop went on for days until I caught myself. It’s up to me to stop my need to identify with the thought by asking myself; what kind of investment do I have in that thought? Can a thought make me happy? How can a thought, which has no substance or dimension get the better of me?

snowflake

It’s like trying to catch a snowflake. Impossible!

And it’s not about stopping the thought either. Try and banish any thought, another impossible task.

Mantra is such a profound way to bring the mind into a one-pointed focus, it can be chanted out loud or internally. Each nuance has a different effect on the mind and body. Chanting audibly affects the pituitary gland, the master gland in the body. It vibrates during chanting which tones and tunes all the other glands in the body. It also affects the Vagus nerve which is responsible for increasing immunity

Chanting out loud increases the length of exhalation too. The longer the exhale the calmer the nervous system. Finally, mantra increases our ability to recognize that moment of getting lost in a thought. Thoughts come and go. It’s the thinker of the thoughts that matters.

For today’s practice join me in a simple chanting practice with the sound OM

 

With great respect…

rachel

New intentions for a new year

With just one day to go until New Year’s Eve every letter in my inbox and blog post is about reflecting on what’s been and looking to what’s ahead. It’s hard not to get caught up in the frenzy and to think I need to make resolutions too. If I could make a resolution that would eliminate diabetes from my life believe me I would. But sadly I can only manage my relationship to the disease which doesn’t have a sense of endings nor new beginnings.

I’ve decided to start my new year in a different way. A couple of days ago I signed up for the Mysugr bundle with the intention of getting support for adding fast-acting Insulin at meal times. I’ve been injecting Basal insulin for the last 3 years and my yoga practice combined with a low carb diet, daily walks, meditation and breathing have kept my levels in range.

IMG_1676

Now I want better control. My CDE suggested I start with a ½ unit of Apidra with my meals, but even with her instructions, I’ve been holding off because, to be honest, I AM FREAKING OUT! Just like I did when I started insulin therapy. It’s been an emotional rollercoaster working up the courage to take this next step. I’m learning that no matter the challenge, it doesn’t work to run in the other direction. Especially when my health and well-being are at stake.

Luckily peer support and diabetes technology can help to bridge the gap.

As soon as I signed up for the Mysugr bundle, which includes an accu-chek guide meter and unlimited test strips delivered to my door, my diabetes coach Gary Scheiner said “Hi” via the app. I was able to chat with him and get advice on when to dose according to my uploaded data within minutes. How cool is that!

I bought Gary’s book Think Like a Pancreas when I started Insulin in 2014. In fact, I took his book with me for my 8- month trip to South Africa and read it from cover to cover. I never thought I’d get his personal support in helping me to manage my health. But then I never thought I’d meet half the people who inspire me every day to live well with this condition. In my experience, the diabetes community is welcoming in a way that has gone beyond any other community I’ve been involved in (including the Yoga community.) It’s brought me to tears and opened my heart and had me in awe every single day.

It’s also why I want to spread awareness.

IMG_1686

This whole holiday season has been about that for me. Bringing my family into the reality of what its like for me to live with Type 1. Showing my Dad my snacks for lows, having my 11-year-old niece help me work out the carb count for my lunch or talking with my mom about why people with diabetes can tend to live in isolation. Awareness definitely breeds compassion and support.

As the holidays come to a close and I prepare for 2018 there is one resolution I’d like to share. It’s the tradition of practicing the Sankalpa meditation. Sankalpa means “ setting an intention” rather than being something we resolve to do, it’s something that arises from the ground of our being. Intentions for me in the past have been single words like love, support, authorship, openness. Whatever the intention I let it percolate until I feel its birth in me. It could be a week, a month or a year later.  Rather than worrying about when my intention will fruit I enjoy the adventure along the way.

 “You are the beginning of the journey, you are the journey itself and you are the destination.” John Weddepohl

Wishing each and every one of you a love filled, joy-filled healthy New Year.

With great respect…

rachel

Increase your vitality in winter

So I’ve been here in the US now for nearly three months and boy is it freeezingggg. I love romping around in the snow but I’m not loving how the colder weather affects my BG levels.

I’ve been trying to get my basal dose just right but it’s tricky. Some days I’m super insulin resistant and then yesterday I spent the whole day eating to just stay at 5 mmol (90 mg/dl).

The ups and downs of blood glucose management are not just taxing on mental/ emotional wellbeing. It directly affects the nervous system. In winter we contract more, do less and retreat into dry and hot environments. All of these things decrease our natural vitality and increase the elements of air and space in our system often causing restlessness, uncertainty, depression, and lethargy and even a physical sense of weakness.

That’s why winter is one of the best times to work on increasing the energy in your system. The best thing to feed your energy is something called Prana. Prana is defined as life force. You absorb prana through breathing, food, and your skin.

Usually, in a yoga practice, you’ll increase the prana through the physiological process of inhalation but you can also increase your ability to absorb prana by bringing awareness to the ribcage and the muscles in between the ribs, the intercostal muscles.  When you stretch these areas you’re working with the sympathetic/ fight or flight part of your nervous system.

Generally, we spend way too much time in this part because it’s constantly triggered when we are stressed. Many of the yoga practices focus on supporting us to spend more time in the relaxed part of our nervous system. ( I.e restorative yoga, yin yoga, passive postures, slow focused breathing) When it comes to the colder months, I like to make an exception and physically activate the energetic part to generate heat and increase my ability to absorb prana.

I jumped into the FB group this morning to share a short live practice that anyone can do to stretch the side muscles and increase energy and vitality. Why not join me and leave a comment to let me know how it made you feel.

 

Traveling, trials, and tribulations

About six weeks ago I was approached by Abbot here in the US to trial their new Freestyle Libre System. They sent me two free sensors and a reader and asked me to post on social media and here on the blog about my honest opinion of the product.

As some of you know I have used the Freestyle Libre system in Australia and love it. So trialing the US version has been a no-brainer. Even though I have used the product on and off for over a year I was excited to trial the Freestyle Libre System in the US because of its new and different features.

Instead of a start-up period of one hour, it has a 12- hour warm-up period. I inserted mine in the morning so it was ready to read by dinner time which meant I could feel more secure overnight when my levels are more volatile.

The sensors last for 10 days (as opposed to 14) and you need a prescription from your doctor. On average the cost for a sensor in the US seems to be less than Australia. I think it depends on the Pharmacy you get them from here and the co-pay coverage by your insurance.

I popped my sensor in on the first day with a FB live (see below) it was absolutely painless and they’ve improved the adhesive factor. You get a reading by passing the reader over the sensor. It has good range and works through several layers of clothing. i.e winter jackets!

After patiently waiting for it to warm up (12 hours seemed like forever) the readings came in almost 40 mg/dl lower than the fingerstick readings taken with the reader. The Freestyle Libre System comes with a reader that can take blood glucose fingerstick readings and even Ketone readings with FreeStyle Precision Neo and Ketone test strips.

In my previous experience, it can take up to 24 hrs. from insertion for fingerstick readings to match the sensor.  Sadly they continued to be out after more than 48 hrs. It wasn’t a great start and bummed me out, especially because I had to get up at 3 am and treat what I thought was a low-low blood sugar which in the end wasn’t one.

I decided to call customer service to let them know what was up. Can I just say, Abbot customer service rocks! It was such a great experience. They were really thorough and asked a ton of questions about the readings I was getting to the kind of test strips I was using. They compared all sorts of data to determine whether it was a reader or sensor error.

25189479_10156030334026410_272199677_o

In the end, they decided to send me a new reader and sensor. I was advised that my new sensor and meter would arrive the next day or I could go to my local pharmacy to pick one up. They were courteous, thoughtful, kind and it really felt like they cared. Luckily Abbott had given me two free sensors to trial so after removing the first, I popped in the second (on the opposite arm) and crossed my fingers.

Success! The sensor was neck and neck with my fingerstick readings all the way. I’ve never worn it on the back of my right arm before (I favor the left side) so I was curious to see if having it on my dominant arm would affect the readings. But it hasn’t made a difference.

I also decided to throw caution to the wind to test the Freestyle Libre’s durability getting it wet, pulling clothes on and off and doing my vigorous yoga practice. It stuck like a dream throughout. However, numbers could be almost 20 mg/dl out after excessive movement like going up a flight of stairs or from indoors to outdoors, doing handstands or getting out of the shower. When I was settled the readings were consistent. So if I saw a trend arrow heading up or down I’d wait about 5 minutes and scan again.

I totally love the convenience of being able to scan as many times as I like and how I can see everything plotted on a graph. It was interesting to see how I dipped low in my sleep and then sharply rose high and then leveled off. Those kinds of readings helped me to adjust my basal dose.

25105698_10156030332726410_1411584703_n

Halfway through the trial, I flew to Utah. I was advised not to go through the scanners and to ask for a pat down. The security guy at JFK tried to convince me he knew better. Telling me that the waves of the scanner were no worse than using a cell phone. I waved my doctors letter at him reiterating I wanted to opt out.

The device survived the flight (as did I) and gave me peace of mind. Having to fumble for my glucometer in the middle of traveling can be a real hassle. I remember taking a flight back from Munich where the passengers next to me also lived with Diabetes (type 2). Every time I checked my meter they looked over my shoulder and made a comment and asked if I was okay. It was sweet but bugged me and in the end, I went and checked in the restroom.  Scanning discreetly throughout the flight meant I could keep my levels to myself.

I also caught a Sinus cold during the trip which meant consistently higher readings and the necessity to increase my insulin dosage to correct. Having the Freestyle Libre system on meant I could keep a close eye on my levels which helped me deal with the extra stress of traveling while unwell.

Even though there were a few bumps at the start of the 10-day trial, I’m giving the FreeStyle Libre System the double thumbs up. I still have one sensor left to go so stay tuned for my next update on the blog and on Instagram and Facebook.

If you’d like to learn more about the Freestyle Libre System you can visit their US site here  

Dear Diabetes

You came like a thief in the night and stole away so much of who I thought I was but I’m not angry at you. I know it’s not your fault. Living in one in 11 people your role is complex. You attack unknowingly. You can be swift or drag out over years.
You do not discriminate. you don’t care about age, sex or race. You don’t care about the season or the time of day. You are like a fire that burns, a storm or a ground-shaking quake. You take life and yet you also engender life like no other.
When you came to me you were like a silent slow creeper, slowly choking my life giving beta cells. You were so quiet for years I didn’t even know you were there. You hid deep in my belly so I mistook you for something else. It was easy to imagine I could fix you.
IMG_4772
It took me so long to realize you were there it could have been too late. I let you wear away my nerves and eat away at my digestion… luckily your slow insipid presence was caught in time. And even though I kicked and screamed and tried to run and hide you forced me to face you head on. Tears streaming and wind on my face.
I’ve learned to lean into you, to ride you like a wild horse, to let you buck and throw but to never let go. Diabetes you are ugly, unpredictable and terrifying. Yet there is a tenderness to living with you. A faith I’ve learned to keep. A delicate balance which has engendered sensitivity, compassion, and care. A moment by moment gratitude for each breath and heartbeat.
A standing on edges of cliffs, without needing to jump or fear the precipice. A strength beyond capability. A grounded being of courage.
Diabetes you have allowed me to know courage, friendship, camaraderie and devoted surrender.
#DearDiabetes You have given me one more day.

Thanks-Giving

I haven’t celebrated Thanksgiving since 2003. I was 37, living in NYC, raising two children, working as a group and private yoga instructor, teaching teachers and doing everything I could to make ends meet. I remember gathering around the table with my family that Thanksgiving and feeling exhausted and vulnerable. I was allergic to just about everything, including the cat and I was embarrassed that I was picking at my food.

As we went around the table to express our gratitude I muttered something about being grateful for family and friends. I meant it at the time, but looking back my words were hollow. I didn’t know that I was already in the throws of diabetes, or that in a matter of years my whole life would be turned upside down.

Rachy-26Coming home for Thanksgiving nearly 14 years later I’m nostalgic for my childhood. Days where I heaped cranberries on Turkey and ate four slices of pumpkin pie.

Of course, I can enjoy Thanksgiving food with all the trimmings but it’s taken me days to get my levels back to normal after weeks of flying and book launch events and I’d rather celebrate the spirit of Thanksgiving in another way…

With a focus on thankfulness

In my daily life, I devote time each day to focus on what I am grateful and thankful for. It’s usually something I do at the end of my morning meditation. When my mind is quiet and my breath is still I think of all the good things that are happening in my life.

Lifestyle. Beautiful girl during yoga exerciseWhen I eat a meal I think about the magic of the seed, the person that planted the seed, the person that plowed the field and watered the plant, the one who harvested the fruit or vegetable, the driver who drove that vegetable to the grocery store, the person who stocked the shelf, the checkout person, the person who made the car so I could drive there in the first place. I think about my mother who taught me to cook and set the table. I even think about the people that made the table, the placemats, the pots and the cutlery.

From seed to table and in between a chain of people helped me to eat my dinner.

To me, Thanksgiving is so much more than gratitude it’s acknowledging how the whole of creation has facilitated that moment where the enjoyer and enjoyment are one.

Wishing each and every one of you a joyous Thanksgiving!

With great respect…

rachel