It’s not my fault

Todays blog doesn’t go into the nitty gritty of gripes or issues I have with my health care team rather I wanted to celebrate what’s working and how my team has helped me heal and thrive. Here’s my Diabetes Blog Week story for Health Care Thursday

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

When I was first diagnosed I was shocked. I’d been doing Yoga since I was 17, it was my career and I’d always been health conscious. So at first, because I thought there was some mistake. I didn’t bother to find out more about my condition. In effect shutting out my medical support team. I’m loathe to admit it but that moment of disbelief, defiance and downright denial took me down a path I do regret.

After 6 years of criss-crossing continents to find alternatives, I landed back in my doctor’s office literally begging him to put me on insulin. The first step, he said, was to get educated and that I’d have to see a CDE (Certified Diabetes Educator). I was excited to start my journey but totally freaked at the same time.  Would she grill me about my diet, my inability to maintain my levels or demand discipline without room for error?

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I had worked my self up into such a frenzy that by the time I was sitting in the CDE’s office actually having my appointment, I was balling my eyes out like a little kid. She asked if I knew why I was so upset. I admitted that I felt like a failure, that I didn’t know why I was there or even why I had diabetes. It all felt so wrong. She sat quietly and listened as the pain and anxiety poured out.

What she said next floored me.

“Rachel, you’ve done nothing wrong to get this and it’s not your fault.”

My jaw dropped. After nearly 6 years of being absolutely sure of a million reasons why I had diabetes, like eating too many lollies as a kid, or smoking way too many unfiltered cigarettes between the ages of 11 and 21. Or just being an untogether person in general. To actually consider it wasn’t my fault felt like putting on a rubber suit, in the middle of the desert in summer.  I was used to taking the blame for just about everything. It was always my fault!

She mentioned that usually type 1 diabetes is triggered during a stressful event. Did I recall any such event?

My whole life clicked into place in that instant. I’d been living in New York City during 9/11. I’d walked into the ash that was screaming up the avenues as the towers collapsed.

I never felt well after that day. Not emotionally or physically. I became more sensitive to foods, surroundings and I developed multiple chemical syndrome. My marriage suffered due to the fact that everything had to fit around me and my specific health needs. In the end we moved home to Australia in the hopes that a less polluted and more holistic environment would support me towards wellness. We never thought it could be something as serious as diabetes because none of the symptoms were there.

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Being able to share my story with the diabetes educator and to feel her total compassion and understanding made a huge difference in coming to terms with my diagnosis. Up until that point and even with my doctor I’d been battling to accept it. Understanding that something had triggered it and that it wasn’t my fault allowed me to be compassionate with myself.

It’s been nearly two years since I came out of denial and began insulin. Since then rather than seeing the medical establishment as something to shun or fear I have huge respect and admiration for the people that are supporting me on this journey. I know the system, isn’t perfect and doctors, nurses and even CDE’s could do better.  I get angry that insurance companies in Australia don’t cover CGM’s or that the government keeps changing how we access our supplies.

But in spite of all that there are real people out there who have studied their butts off to help people like me and I couldn’t be more grateful!

with great respect…Rachel

P.S Want to know more about my passion for yoga and diabetes? I’m offering the first chapter of my new book on Yoga for Diabetes for free. Find the right practice for your type by learning all about Ayurveda, the sister science of yoga.

 

 

 

 

 

 

 

 

 

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photo by Matthias Boettrich

Remembering 9/11

I used to play the blame game when it came to having diabetes. But all that came to a halt on my first visit to the Diabetes educator. “ You know you’ve done nothing wrong, “ she shared, “some people just have the marker in their genes and it gets triggered by a stressful event. Can you think of a time in your life where you could have triggered the gene?” 

9/11,  thats when everything shifted.

That day was terrible, terrible for everyone.

We were in Manhattan waiting for my mentor and Yoga teacher Alan Finger to teach his yoga class when the planes hit the trade towers. As soon as I realised what had happened, I felt like I’d been shot in the chest, my legs buckling underneath me.  After a few minutes I had to get out of there. My son and stepson were at school a few blocks away and I wanted to be with them. Dazed and feeling sick to my stomach I walked out onto the street. It was quiet; ghost like, people with ashen faces walked beside me. The sky was a crisp blue and I wondered, how could everyone just keep going?

By the time I arrived at the school I was feeling faint. I wanted someone to hold me and look after me, but I wasn’t the only one in shock. I had to pull myself together. It was a relief to have both boys with me. The only way home to Brooklyn was to walk across the 59th Street Bridge. I could feel fear stuck in my throat, dry and hard. Gripping my sons’ hands, we walked.

Nearly seven hours after the towers had fallen I fell into my husband arms, but it was no consolation for the shock that numbed my body. I couldn’t eat, couldn’t even think because my whole world had turned upside down.

I don’t think I ever really recovered emotionally or physically from that day. And although I can’t specifically pinpoint the day my beta cells started collapsing I started experiencing a lot of strange physical symptoms about a year later. Tingling up and down my body, difficulty concentrating, insomnia, a feeling of being overly expanded, frequent urination, hives and skin rashes, racing heartbeat, difficulty digesting and many more things which turned my life into a living hell.

Recently I read an article that stated that those exposed to the debris from the falling towers are only now showing an array of symptoms and illnesses.

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There was nothing I could have done to avoid that day. When the unexpected happens it happens. Right now somewhere in the world some terrifying event is taking place and someone is exposed to something they didn’t expect and could never predict. How does anyone cope? How do we move forward? I imagine a lot of us are reflecting on that today.

A friend of mine posts the same story every year on her facebook page. She says she does it so she never forgets how lucky she is. I also feel lucky, An odd thing to say when one has an incurable disease. Being diabetic is an opportunity to thrive against all odds. In my opinion that’s always the way forward. Keep doing your best, keep loving what is, no matter what.