Beta Cell #004: Rachel Zinman Transcript

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Craig: This is Beta Cell. A show about people living with type one diabetes. I'm Craig Stubing.

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Craig: Latent Autoimmune Diabetes in Adults, also known as LADA is a lot like type one diabetes where the immune system attacks the beta cells in one's pancreas, causing it to stop producing insulin, but LADA only occurs in adults and the onset can take place over years which can result in a misdiagnosis of type two diabetes. During this extended honeymoon period before diet and exercise can alone no longer control one's blood sugar.

Rachel was diagnosed with prediabetes at 42 years old, even though she had been practicing and teaching yoga for two decades. Once she started feeling the symptoms of high blood sugar, her lifestyle actually postponed her diagnosis of LADA for six years, and even now she only takes one shot a day, but being in such a health-conscious profession, the stigma of having diabetes brought her feelings of guilt and shame in her diagnosis.

She has just written a book, Yoga For Diabetes where she shares her story as well as a guide for practicing yoga for people with diabetes. There's a link to her crowdfunding page in the description of this episode. I talked to Rachel from her home in Byron Bay, Australia. How do you define yoga? What is Yoga as you teach it?

Rachel: Yoga is just a word to describe oneness or wholeness. The yoga practices are there to remind you of that piece that you already are, that joy that you already are, the happiness that you already are, and that's why we feel so good when we do yoga because by stretching, by breathing, by bringing the mind into a continuum and focusing the mind on the breath. It takes it completely out of its preoccupation with thoughts, and really if we think about it, thoughts and our identification with the thoughts, our need to involve ourselves in our thoughts is what creates stress.

It could be thought about your blood sugar reading. It could be a thought about your illness. When you pull yourself out of that, when you bring the mind into one point of focus, you forget for the time that you're doing the practice, that you have a disease. You forget everything. You feel so great, and that's really what yoga is. It's that moment of understanding I am the piece, I am the stillness, I am the bliss because you're with yourself and that self is yoga.

Craig: When did you start doing yoga?

Rachel: Well, I started yoga when I was 17. I was in high school, it's weird because I don't even really remember that it was yoga. I just had this really cool teacher. He was also the modern dance teacher and we used to do some stretching and then I didn't really get into yoga properly until I was 19. I was told by my chiropractor that I needed to do some yoga because I had a bad back. I was a dancer and I was always dealing with sort of issues with my lower back.

That's kind of when I started yoga it was 1984 or something like that 1985, it wasn't popular, it wasn't booming, only really kind of weird people did it. I was almost embarrassed to be in the class because I was so young and everyone took it so seriously and there was so much relaxation involved and I didn't really understand what it was all about. A few years later, I was living in this town where I live now, which is Byron Bay. Someone had said to me, or you should really try yoga.

Here we have a great community of people who do yoga. They told me about this one teacher, and so then I went to her class and she was a couple of years older than me but very, very inspirational. She'd been to India a lot of times. She really had a mastery of the physical practice and she totally inspired me. After that, I don't think I stopped. I just-- that was it, I became like an absolute fanatic. From the time I was about, I guess by then I was about 23 until now I'm nearly 50. I really haven't gone a day without yoga.

Craig: At what point do you start feeling weird and then think something's going on with my body that isn't quite the way it used to be?

Rachel: We had moved to New York City from Australia. We've been living in a small country town. We'd gone into the big city and I had to work really hard. I was teaching probably between 20 group classes a week and then teaching privates. I was also teaching in the teachers training and I had this very pretty hectic lifestyle. I mean I would wake up at five in the morning and get home at nine at night and at the same time I had a family, I had two children that I was looking after and it was quite intense.

Then 9/11 happened. I was actually in Manhattan, we were in a yoga studio we ended up leading a meditation, and we could just hear all the sirens, heading down the avenues and it was completely shocking. I don't think I've ever experienced shock like that before in my life. I literally couldn't breathe, couldn't walk, didn't know what to do. That period of shock really, it took me a long time. I'm pretty sure I had post-traumatic stress afterwards.

Then I would say six months later I started to feel really strange, I started to have a lot of problems with my nervous system. I was hot and cold. I was not sleeping well. I felt I couldn't digest food, I just didn't know what was going on and I didn't really put two and two together. I just kept thinking, "Oh, I'm just stressed out. I've done too much yoga. I'm teaching too much, I'm working too hard."

I was really, during that whole time seeing lots of different kinds of health practitioners, seeing homeopaths, seeing regular doctors, seeing acupuncturists, taking herbs, just trying everything I could to try and get my nervous system back because I just, I felt so weird. I kept having my blood sugar tested and the results were normal. I never went in that direction of thinking that possibly I might have some sort of diabetes, but things did progress eventually to reveal that that might be the case, but it took a long time for me to even know that's what I had.

Craig: At the time, what did they think was wrong or what did you think was wrong?

Rachel: One of the things that they had said was that possibly because I had gone on a raw food diet as well. I was Vegan. I was on a raw food diet. I was doing so much yoga that they thought that I'd really depleted my spleen and that it was just probably just a real disturbance in the digestive system. That was really flaring out into everything else. There was some speculation that I was having some sort of spiritual thing going on as well.

I don't want to say too much about that because you're just grasping at straws really when they can't give you a proper diagnosis. I went to England during that time and I was peeing a lot and I thought maybe I had a bladder infection and I went into a clinic and they tested and they said, "Oh, let's just test your blood sugar," and my blood sugar was, I mean, I can really remember the reading, it was like a 5.5.

Craig: Just a quick note for everyone who isn't familiar with European blood sugar numbers, which are in metric. Here in the US the goal is to keep one's blood sugar between 70 and 130. In metric that equates to being between 3.9 and 7.2.

Rachel: She said, no, no, no, you're fine. I was like, okay, I won't even think about that and I did have my blood sugar tested regularly. I left New York, I came back to Australia, I was having my blood sugar tested, there was no problem. Then I was seeing an acupuncturist and he kept saying to me every time I went in there with my symptoms, he said, "This is really symptomatic of someone who has diabetes."

I would just say, "Well, you've known me forever." I had known him for a long time. "You've known me forever, surely I don't have that." He's like, "No, no. It couldn't be that, those are the symptoms." I would say from when I got back from New York, which was 2004 and when I finally got something started to not look good in the bloodwork, that was 2008, at that point I had like a really, I would say I had a collapse.

I couldn't get out of bed. I was exhausted every time I ate sugar, I felt really strange. I had this really sweet taste on my tongue. I wasn't peeing a great amount, but I just felt unusual when I ate. I guess I was having reactive hypoglycemia because I would just have these incredible feeling like I was shaking and everything was dropping and the next minute I'd feel totally wiped out and exhausted.

My husband at the time, he said, "Go to the doctor, let's just do another blood test." We both had blood tests, and I can remember this moment so clearly because I was sitting in my yoga room, and I'd just done my practice and my husband comes in and he says, "Well, I've been to the doctor and we've had our blood tests done and my blood tests aren't good," he said, "but yours are really bad." I was like, "What do you mean?" He said, "There's something wrong with your blood."

I was thinking, "Oh my God, what is it? Am I going to die?" Anyway, I go into the doctor and he sits me down and he says, "You have diabetes." Just like that. There was no kind of no sugar quoting. He was a GP, general practitioner so he just said to me "Look, I went further, I looked at your A1C. Your A1C says is 6.8, this is high and you're going to have to work out what to do. You're going to have to find out how to cure yourself."

He was thinking I had type two. Gave me a few pamphlets and said, "Google diabetes." My God, so I'm sitting in the car driving home from the doctor's office, I'm just about to go to India to teach in yoga teacher training. I have three days to come to terms with the diagnosis and I just didn't know what to do, I was in complete shock. My husband was able to get me into an endocrinologist pretty well straight away, who was actually a friend.

He was very reassuring and he said to me, "Look, we don't really know what this is let's not assume it's diabetes, let's do some more testing and buy yourself a glucometer, head off to India, test yourself." He wasn't as worried or confronting as the GP, he was very calm. With that, I just went off to India and was checking my blood sugar and it was between four and six, so I was like, Oh, well, it's okay."

I was a little bit confused, I didn't really understand much, I didn't read anything, I didn't even think about it, I basically just went into denial and thought well as long as I don't go above six I'll be okay, but things did change as the years went by.

Craig: Was that a slow change?

Rachel: It was very, very slow. I was able to maintain my levels really well. I did it mainly by really changing my diet so I've been vegan and then I was no longer vegan but still wasn't really eating any animal protein. One of the first things I did was I went back to eating fish, chicken, and meat, so I went into a low glycemic diet, I started walking including a walking regime into my program, so I wasn't just doing yoga I was also going for an hour walk every day.

I started being a little bit more cardiovascular as well, doing a bit of dancing every day and just with all that exercise and with the change in my diet I was able to keep myself in range. However, I did go to the doctor a year later and he said, "Look, I've done the gad antibody test and you are producing antibodies, they are attacking your pancreas and it's only a matter of time." No, I don't know why I didn't hear what he'd said but I really didn't hear it, and I remember thinking, "But surely I can rejuvenate the cells in my pancreas."

He just looked at me and sort of shook his head and I just thought, "I'm not going to take no for an answer, I'm a yoga teacher I'm a yogi, I've done yoga since I was really young. Surely I can fix this." That was the point where I missed the fact that I was a type one diabetic, I totally went over my head. Then I went into this whole thing about seeing everybody I could see to try and fix myself and everyone kept saying, "Oh, you're not diabetic, you don't look diabetic, your symptoms aren't diabetic."

It was just this period of six years where I just refuse to acknowledge that I was sick. What happens with type one is not much you can do about it, it just starts to get worse and worse and worse and worse. As my levels got higher and higher and higher, I just went more and more into denial and I would look at that number and I'd say surely tomorrow will come down, surely tomorrow it will come down. I would just walk up hills more and I would restrict my diet more and it was like banging my head against the wall and finally something had to give. [laughs]

Craig: What happened when that gave in?

Rachel: Well, I think it really had to do with my partner. My relationship ended, I've been traveling for five years, I had met this wonderful new man and very very supportive. He just couldn't take it anymore and he said to me, "Look we've tried everything. We've been to the Ayurvedic doctor, we've been to the herbs and spices doctor, we've seen this guy and that guy," and he said, "I'm marching you into the endocrinologist and you're sitting down and were telling him what the levels are and we're going to see what he has to say."

The other thing that happened was that I started to get neuropathy in my hands and my feet, and again I kept thinking, "Oh, it's B12 deficiency or I've had too much zinc." I kept making up all these reasons why it wasn't working. I wasn't getting any better but the neurologist had also said to me, "Now, what's your A1C?" I didn't really know at the time, but I knew it would be high.

I said, "I think it's high," and he said, "Well, if you want to reverse this you better get your blood sugar levels down, you better consider going on insulin." That was how I greeted the endocrinologist and my A1C by them was 10.7.

Craig: Well, once blood sugar shows the concentration of glucose in your blood the moment you tested and HPA1C which is just called A1C for short is an average of one's blood sugar over the previous three months. People without diabetes have an A1C under 6%, and the goal for people with diabetes is to keep their A1C below 7% to avoid long term complications.

Rachel: I was still feeling okay, this was the strange thing is I had still had a lot of energy, I wasn't peeing that much in my opinion, I wasn't thirsty, I didn't have any of those typical symptoms. The endocrinologist just took one look at me and said to me, "Look we're not going to try anything else, you're a type one LATA diabetic and we're going to start you on long-acting insulin as soon as possible."

That was the point where I think it really hit me, I was crying, the endocrinologist was crying, we were all crying because it had been six years and we've been working and working and working to try and keep that honeymoon phase going. I didn't know was a honeymoon phase, I didn't really understand anything about diabetes. At that point where he gave me the diagnosis, that was the point where I really let go and I just let go of thinking that I could cure myself, I let go of thinking that it was my fault that there's something I could have done different. It was just a huge relief, it was amazing, I felt like I was enlightened. [laughs]

Craig: After the break, we talk about the physical and mental challenges Rachel faced as a yoga instructor after her diagnosis, and she explains the motivation for writing her new book.

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Craig: This past weekend I ran my very first marathon. It went great just so you know, so great in fact that a few other runners with type one and I have started a brand new organization to help raise awareness of type one diabetes through running. which we've named Type One Run. We hope to help people tackle the challenges of running with type one as well as foster a community of runners who want to show the world what type one really looks like. If you want to get involved we're going to be a leader in your city, you can find us on Facebook or typeonerun.com. Plus we have really cool tee shirts.

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Craig: Can you describe the internal conflict up to this point where on one hand you have doctors telling you this is the medication you need to take to feel better but you didn't want to do that.

Rachel: When I was at the point where I had to go on insulin there was no longer any conflict. I did completely just say okay, I have to do this otherwise there's no way out. The resistance came before because I had fear, I was uneducated, I didn't understand actually what insulin does. I thought I couldn't have a life if I was on insulin, I thought I travel all over the world, I teach yoga internationally. I was ashamed, I thought that people would think that I had given up.

There was a fear around the fact that insulin puts on weight and I like to stay really fit and healthy. What if I couldn't control my weight if I was on insulin? There were just so many things that were standing in my way, but what I weighed up at that point where the doctor said to me, "You've got to go on insulin this is a life or death situation," I thought, "What do I want more? Do I care about all those things or do I want to be healthy?"

Obviously, wanting to be healthy outweighed my fears, my concerns, my shame, the way I would be perceived in my career and all that. All that just dropped away and again, that's why I say I felt so enlighted, I felt so free because those things had really held me back, the way I would appear in the world or how I would be seen all that kept me from hearing and accepting the truth about what was really going on.

Of course, the moment I started insulin I became informed as well I started reading, I started informing myself. I started connecting with people. I just realized, "Oh my God, this is just going to make my life so much better," and it definitely has.

Craig: Has there ever been a point in your career that you have felt like having Type One Diabetes has gotten in the way at all?

Rachel: I would have to say, yes, definitely. I want to be really honest here. I mean, I think the main thing is that there'll be a time where I have scheduled a class, and I haven't thought, "Oh, my God, I've got to take my shot at 9:00 PM, but I'm actually teaching till 10:00 PM, how's that going to work, and it's too late. It's some gig that's happening in Switzerland, and I've planned it six months in advance, and everyone's booked in, and I can't really change it."

In that sense, I've got to really think about how that's all going to work, usually, just take my needle, head up to the bathroom and give myself the shot in between and come back down and leave everybody in a posture, that's happened. I think the other thing is, period would go by, the class would be too long, my blood sugar would drop, I'd have to eat, I'd be sitting there leading them through a relaxation while munching on a cracker, kind of embarrassing.

The big thing is like, I feel being a yoga teacher, I used to think you have to appear a certain way. I keep saying that appearance, but people expect you to be well and healthy. Everyone knew me as a very healthy, committed and dedicated practitioner, and then all of a sudden, I'm sharing, "Well, I'm diabetic". Then I'm saying, "Well, actually, it's Type One". People are just shocked. "How did that happen to you? Why did that happen? You're so healthy, you're so fit, how could this happen?"

Then I have to go into the whole explanation of the difference between Type One and Type Two. People's eyes start rolling back [laughs] in their heads, it's too much information. I just think, "Okay, poor Rachel," and you don't really want that either. All those things come up with the sort of career that I have.

Craig: It sort of seems like you were worried that telling people you had Type One Diabetes, it almost reflected poorly on your ability as a yoga instructor. People don't understand what Type One is. It makes it seem like you're living this unhealthy lifestyle.

Rachel: Yes.

Craig: Then why should they trust you as their yoga teacher, if you can't take care of yourself?

Rachel: Well, that was definitely the biggest thing that I had to deal with emotionally, on every level even after the first diagnosis before I knew it was definitely Type One. That's what I cried about. That's what I felt guilty about. That's what I felt ashamed about. That's what I blame myself for. Those are the really deep things that came up? I think that's the biggest obstacle that I've had to overcome, really, on a personal level.

I think I can really inspire others who are diabetic to take up yoga. I've seen the results with the people that I've worked with, who have diabetes, how much it helps control blood sugars, improve sleep, improve mood, does so many things. That wasn't really what happened for me. That's what I've worked inside myself to come to terms with is that it doesn't matter how much yoga I do, it's not going to change the situation.

It will help me to manage my stress associated with the situation. That's what I've come to, and I've stopped apologizing, and now it's all about advocacy and information, and saying, this is what happened to me, and I'm okay about it, and I still want to share what I have to offer.

Craig: You're working on crowdfunding a book that you're writing, Yoga For Diabetes, why did you decide to write this book?

Rachel: It actually started because I said to a friend of mine, "I'd really like to create a program for teachers, to teach them how to work with people who have diabetes." I think that people who have diabetes and just go to regular classes, and there's nobody really that specializes in that or would understand their unique needs. My friend said to me, "You don't want to do that, you want to write a book, rather than training teachers, why don't you just go directly to the people who have diabetes and share what you have with them".

Can be a coffee table book, it'll be beautiful, you can have photos, you can teach- give sequences, you can explain everything that you know. That was sort of the seed. Then listening to other people's stories has helped me so much except my diagnosis. I thought what if I share my personal story, and then from there go into my whole understanding of yoga and also Ayurveda, which is the sister science of yoga, and bringing that all together with yoga sequences, and breathing techniques, and meditation techniques. Part personal story, part how-to guide that will really help people, so that's how the idea came about.

Craig: If the new you could see the old you, back in New York, starting to feel we are not sure what's going on, what would you tell yourself?

Rachel: Don't be afraid, and go and get every test you could possibly get, get your A1C tested, get informed, find out what's going on? Yes, of course, it's great to have alternative health sources. We need it. It's really important. It's a great backup. We have modern medical science, and it can provide answers and get those answers. That was the big thing. I was so afraid of modern medicine.

My mother died when I was very young. She had a brain tumor, she was operated on and she died from complications from the anesthetic. I had this aversion to medicine, and I was afraid of any test or any pill or anything. I would try and reassure myself and say, "Look, modern medicine is amazing, give it a go, try it find out and trust".

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Craig: Beta Cell is produced, recorded and edited by me, Craig Stubing, and our theme music is by Purple Glitter. You can find Beta Cell on Twitter and Facebook at betacellpodast.com. Be sure to subscribe to Beta Cell on iTunes and Stitcher to get new episodes delivered automatically to you. If you like Beta Cell, please leave a review on iTunes because it really helps other people find this show.

Rachel's book Yoga for Diabetes is in its very last days of crowdfunding. Please help her reach her goal so we can all benefit from her experience and knowledge. There's a link to her campaign in the episode description and on our Facebook page.

I'm Craig Stubing and this is Beta Cell.