Sunday, August 20, 2017

Does my illness define me?




This is a topic widely discussed within the chronic illness community. You'll see people saying  everywhere, "Don't let your illness define you."

You know what? No, my illness doesn't define me, but it is ONE of the things that defines me. But just here is a list of other things that define me:

  • My favorite color.
  • My favorite TV show.
  • My favorite animal.
  • The thoughts that go through my mind before I go to sleep.
  • What causes I feel passionate about.
  • What I like to do in my spare time.
  • What kind of characteristics I'm drawn to in a friend.
  • The way I react to specific types of situations.
  • The little things that make me laugh.
  • How introverted or extroverted I am.
  • What situations I tend to shy away from.
  • How I treat strangers.
  • How I treat my friends.
  • My goals and aspirations.
  • What makes you grateful.
  • The people you love.


And then there's the debate. Does my health status go on that list? I'm not sure it absolutely goes on that list. But I can tell you without a doubt that my chronic illness affects almost every single thing on that list. And yeah, that makes it a big part of me in the end.

For example, the things that make me grateful have changed since I became sick. I'm grateful now for things that I previously wouldn't have even known to be grateful for because of my illness. I treat strangers differently now because you never know what they're going through. I do activities in my spare time that my abilities allow me to do. I feel extremely passionate about raising awareness for these causes that I may never have even been aware of had I not gone through this.

A very wise woman named Kerri Sparling, who has Type 1 Diabetes, coined the quote "Diabetes doesn't define me, but it helps explain me." And to me, that's an incredible way of saying it.

I think the phrase "Don't let your illness define you" should change to "Don't let your illness be the only thing that defines you." Because it is inherently a part of us, even if we didn't choose it. But each and every one of us have other things that explain who we are even better than our illness does. And sometimes I do like to choose to focus on that.


Saturday, August 12, 2017

Valued Voices #5 - Mike Natter - Brand New Doctor living with Type 1 Diabetes





Hey Mike! Thanks for being here to answer some questions. I’ll start off my letting you introduce yourself.

Mike: Oh boy, that’s a tall order. I’ll give you the short of it. I’m Michael Natter. I’m 31. I’m a New Yorker, and I’m a Type 1 Diabetic of almost 23 years, and I’m a newly-minted doctor. I’m in my Internal Medicine Residency at NYU, and I’m also an artist.




When did you decide you wanted to be go to med school? Was that your childhood dream, or anything close to this?

Mike: Okay so, we’re digging in, Michelle, we’re digging in. So yes, and no. So I grew up in New York, and things that came more naturally to me were more of the arts. So I was much more inclined to paint and draw, to write. I was good in history and that type of stuff, the humanities. I was god awful at math and science, like, truly horrific. There were no doctors in my family, no real science in my family, and I was much more someone who could pick up a crayon, and I would shy away from the math textbooks. And so my whole life, I was kind of shitty at math and science. So I kind of geared more toward the arts.

Then when I was diagnosed with Type 1, I had just turned 9 years old, and as I’m sure you can relate, and most people who have Diabetes can relate… when you’re diagnosed with Diabetes, something that once was this automatic, unconscious process that your body was doing for you, has now become your full time responsibility. And in that shift of taking on this newfound responsibility, I gained this really deep appreciation for what medicine was, and what biochemistry was, and what things were happening in our bodies. Like a beautiful symphony of chemicals, and enzymes, and molecules, and it’s like “Holy shit. All of this is going on inside of me and I had no idea and now I have to take care of it”, and now as a grown man who’s a physician, who STILL struggles to maintain my blood glucose, it’s a really tall task to deal with.

So I got this window into physiology, and it made me fall in love with what was going on. I was really fascinated by it. So at that age I was always kind of interested in medicine, but because of my academic weaknesses, and my other strengths, I never really considered it as an actual possibility. And recounting of when I was growing up, you know growing up in New York you’d take the subway places, and I would be in the subway in high school or whatever, and I would see people in their short white coats, I’d see people in their scrubs, and it would be like seeing an astronaut. And you’d have this sense of just awe and admiration of like, you want to aspire to be like them. You want to be that astronaut. But you also know that you will never be that astronaut. So for me it didn’t even seem in the realm of possibilities.

So I went ahead and I ended up going to Skidmore College in Upstate New York, because they had a very strong art program. And I went there mainly for that. So I went to study art essentially, and I would draw these large naked women in charcoal and bring them home on my vacations and my parents, who were funding my college tuition, were like “Honey, come on, like forty thousand dollars for you to draw a pair of tits.” And I had to kind of reassess. So I reassessed, and I started studying neuropsychology, because I became very interested in the brain. I found a mentor within the neuroscience department who saw my interest, who saw my potential, and kind of took me under his wing. And it wasn’t until that part in my academic career that I had gained some academic confidence in myself. And I had this epiphany at the end of college that I wanted to go to med school.



How did you get through med school? Was it harder getting through med school and managing your BGs at the same time?

Mike: Yes, so, I was was never one of those diabetics whose A1C was always like 6.0 all the time, and you know, I always struggled, my blood sugars would fluctuate quite a bit in every environment that I was in. So med school being a very stressful, difficult environment, you kind of lose your autonomy of your time. You might be in the hospital for 8 hours, or you might be in the hospital for 24 hours, and sometimes you don't know. But how I got through med school academically was through my art. I drew everything, and by drawing everything, not only did I kind of make the material my own, but it made it a lot more enjoyable.



Now I ask every person with Diabetes that I interview this question; Favourite low snack?

Mike: I have this issue of when I’m low, I get these pregnant lady cravings, and I just shovel things into my mouth. I tend to have a craving for chocolate, so anything chocolaty is kind of my go-to, even though chocolate’s probably the worst thing to eat when you're low because it has all that fat.

 


Are you a pump user, or a Dexcom user?

Mike: Yup, I’m using the new Medtronic pump, and I’ve got my Dex.




Did you ever consider endocrinology as a specialty? Or do you deal with enough of that on a day to day basis?

Mike: That’s my plan! I want to be an endocrinologist. That’s what I’m planning to do.




Do you think having a chronic illness yourself will make a difference in the way you treat your patients compared to doctors who have never been through it?

Mike: I absolutely do. At least in America the training process is so crazy, and the volume of patients that you see and how sick they are, we’re overworked, and it’s very easy to become desensitized to the patient suffering. And it’s also very easy to kind of write patients off, especially their complaints about what’s going on. So being able to relate to them is huge.



Your Instagram is full of incredible anatomy art. Did you draw as you learned in school? Is that how you studied?

Mike: Yep, you got it. I mean, it’s two-fold. So I like to draw, just to draw, and the long detailed drawings that took longer were not necessarily done in med school and to study, they’re more for fun, and for aesthetic purposes, and for commissions, and stuff to hang in my house. But the large majority of what I’ve posted over the last 4 years is for medical school, and to help me learn. I never considered myself intelligent, so you know, when I was learning very complex things, the only way that I could understand them is if I broke them down, and explained them to myself in very, very simple terms.



In medical school, do they still teach something along the lines of “If you hear hoofbeats, look for horses, not zebras”?

Mike: Well in your case you’re quite a zebra. They do teach that. That common things are common, and it’s funny you say that because I have a penchant for zebras. I find that the sexy parts of medicine to me are the Sherlock-Holmes-y, detective things. And so I seeing a patient before they open their mouth, by looking at them and figuring out what’s going on with them. And there’s a handful of very rare diseases that if you could pick up, you’re like a superstar, because no one thinks of them. I’ve gotten into trouble though because medical education is so structured and so hierarchical that every way you talk about things is kind of algorithmic. So I would go see a patient, and the attending physician would say, “What’s your differential diagnosis?”, meaning what’s the list of most possible to least possible things this person has. I would always throw too high up on my list, you know, “Stiff Person Syndrome” “Pheochromocytoma” “Multiple Endocrine Neoplasia”, and they’re like, “There is no way this person has any of those.” So yes, they still teach that. And when you're dealing with a volume of patients, more often than not, 95% of the time, it will be the common thing.



I had a very finding out what was making me sick. At first my GP would blame my depression or anxiety. Then blamed deconditioning, and so on and so on, when my basic tests were normal. Because how can a vibrant young girl be sick? Turns out, I have quite a list of doctors to go back to and let them know what they missed. And I know way too
many people with the same story. With that being said, I have two questions.

Do you think patients are judged on their age, appearance, and possible history of mental illness?

Mike: Sadly, I think they are. And I think that the problem is medical education. Because we are taught based on multiple choice exams, and multiple choice exams kind of push doctors to learn by pattern recognition. And pattern recognition also relies on demographics. Demographics being.. before I even finish rest of the question on the exam if it says “Middle-aged African American woman with joint pains”, I’m already thinking “Sarcoid and Lupus.” So these are the things that they just try and shove into your brain. Or like “Young white caucasian female with headaches and vision issues”, you’re thinking “Multiple Sclerosis.” So these are the ways that they teach us because there’s so much volume of information, it’s almost impossible not to use those patterns.  And I think for 70% of the time, it’s good. It helps you. But then those people who fall through the cracks, those 30% of people, are getting judged by those types of things.



What do you think is the best way to make complex patients feel heard?

Mike: So I think patients are patients, and patients are people, and like any person, they literally wanna be heard. There’s data that shows physicians will interrupt their patients in seconds when they walk into the room. I make an effort to sit down. And I think that’s also something a lot of doctors don't do and there’s data that shows that if you spend the same amount of time with a patient, and in one instance you’re sitting and in one instance you’re standing, the patient perceives you as being in the room longer. So I make a real effort to sit in the room, and I make a real effort to ask how they're doing, and ask open ended questions and let them talk and tell their story.

 Thank you Mike for the great interview! You can follow Mike and his cool drawings on Instagram @mike.natter 




Tuesday, August 8, 2017

YOLO

Since my diagnosis and prognosis began to sink in, I've found myself looking at life a little differently.


While my illness isn't terminal, it struck me that this could be the healthiest I could ever be in terms of mobility. And that's not to be negative, we've known for a while that my disease is progressive, but now that I've learned exactly what could happen to me at any time, it really hit me. I don't know what future treatments will hold, and what streaks of improvement I might be lucky enough to have, but I do know that I'm living with a progressive disease. And I'm beginning to become aware that one day there will likely be a lot of things I can do right now that I might not be able to later.




So no, I'm not planning on going skydiving, but I find myself saying yes to things I would have said no to out of anxiety or because I knew my illnesses would cause trouble with it. Before I start treatments that may help my mobility and slow progression, but may cause troublesome side effects, I'm traveling as much as I can to see friends. I find myself wanting to explore. I'm trying things I would normally shy away from. I find myself wanting to make as many unforgettable memories as I can.



When I'm asked to do something that's out of my comfort zone, mentally or physically, I get struck by the fact that I might never in better shape than I am right now. And it's a humbling thought. But I've also found myself sounding like a loser and saying "YOLO" out loud several times. For anyone who somehow doesn't know this acronym, it's you only live once. Hopefully I'll get access to treatments that will that will make me feel healthier than I feel now, at least for periods of time. But in the meantime, I'm trying to live by YOLO.


I'm an overthinker. For everything. And I think in part this is teaching me to let loose a little. And while that's caused by something not so positive, it makes me feel positive. And I think that will take me further.




Wednesday, August 2, 2017

Blood Sugar Issues Without Type 1 or Type 2

Did you know that those of us with Diabetes aren't the only ones who need test kits, and in some cases pumps, and insulin?


Little disclaimer: I am not a medical professional of any kind, and these are things I've learned from my friends fighting other diseases. If something here is not perfectly accurate, this is why, but I tried my best. I also didn't include Gestational Diabetes as this is something that I think most people are more familiar with. Happy reading!

The more people I met in the chronic illness community, the more I learned about this. Firstly, I met several friends over Instagram who had something called Cystic Fibrosis Related Diabetes. Cystic Fibrosis is a disease where thick, sticky mucus accumulates in the lungs and causes breathing difficulties. This turns into a cycle of infection and inflammation, which can damage the tissue of the lungs.

Most people think that Cystic Fibrosis is only a lung disease, but what they don't know is that it can also affect the digestive system. Mostly, the pancreas.  The sticky mucus I was talking about above can accumulate and block important ducts in the pancreas. These are ducts that secrete enzymes that help digest food, which is why some people with CF struggle with nutrition. And now we get to the cause of Cystic Fibrosis Related Diabetes. The thick mucus causes scarring of the pancreas, and the scarring prevents the pancreas from creating normal amounts of insulin. So like people with Type 1, they become insulin deficient. In my opinion, my friends with CFRD seem a lot like us with Type 1 when it comes to Diabetes care. A friend of mine also informed me that insulin absorption is also affected by the rate at which they get infections. The more their Cystic Fibrosis is acting up, the higher their BGs are so there's a need to adjust their insulin dosage.

A couple of years ago I was having a test done and the nurse told me she has Diabetes too. I asked her what type. And she proceeded to tell me a story about how she had a severe bout of pancreatitis and it caused her beta cells to stop functioning. I was mind blown, because I never knew that something like that could cause insulin dependence.

To add to that, I have many friends who deal with blood sugar problems due to their severe gastrointestinal issues, particularly digestive tract paralysis. Many of them require different kinds of feedings tubes, and some even require TPN, which is IV nutrition. Because of the paralysis in their digestive tract, food can take days to actually digest and just pile up. They deal with malabsorption and it wreaks havoc on their blood sugars. Due to the malabsorption and for some, constant vomiting, their BGs often go low. Those on TPN have to find a fine balance, and sometimes actually require insulin in their TPN because it can make their blood sugar go high. And for those on TPN, when their infusion stops, sometimes their BGs will suddenly drop. So like I said, it’s a fine balance and takes a lot of adjustments.

When I want to grab supplies, like Pump Peelz, for my non-T1D friends, and I tell my T1D friends why, they usually had no idea about all the other reasons people might need meters, glucose tabs, insulin, etc. So I thought I’d share this because, well… the more you know! Maybe you learned something new here and maybe you didn’t, but either way, thank you for taking the time to read.



Wednesday, July 26, 2017

New Life as a Part-Time Wheelchair User

Being a new part-time wheelchair user is weird. Or let me rephrase it. It's a weird experience.

video

After trying a wheelchair with my Occupational Therapist at the rehab centre I was at, I was surprised at how much it helped me. My legs weren't giving out, I wasn't sweating and getting dizzy, and my eyes weren't going blurry. So we went ahead and made the decision that the chair would be a benefit for me and improve my quality of life, and I decided I'd push past the nerves of public judgement.

I knew there would be some adjusting when I started using it just about a month ago. I knew there would be eyes on me. I knew my arms would be exhausted from self-propelling.

As a generally self-conscious person in social situations, I don't like drawing attention to myself in a room. I want to stay with my friends, my people.

Regardless of the chair, I'm already the type of person who worries if a stranger looks at me the wrong way or stares for too long. I automatically start wondering if my I have something on my face, if my fly is undone, or that maybe they just hate my outfit. My mind goes to the worst. And this is something I'm working on and will always be working on.

At the conference this past week, I wouldn't have been able to get anywhere in the giant hotel without it and it was such a great tool. It was confirmation that it was the right decision to start using it. Not to mention I have loving friends who were willing to push me on the carpet while I held their drink. I was with my people, and I knew they'd stare down anyone who gave me any looks.



But on a day like this week where I was dropped off at the mall and went alone with my chair, I didn't feel as safe. People stared, and I didn't blame them, because a wheelchair tends to just draw your eyes. Some people were extremely kind and made room for me to wheel around them. Others watched me trying to get by while they were blocking the aisle, and stood still.

















There is a lot of stigma surrounding wheelchairs. People who don't know wheelchair users, or who are just unaware, sometimes think that everyone who uses their wheelchair are stuck to their chair. They're not necessarily aware that there are multiple uses for wheelchairs. That many wheelchair users can walk, but can't walk long distances, or have a chronic illness and need a chair part time due to their symptoms. So like I've said, no, it's not a miracle when a wheelchair user gets up and walks. But I'll save this for another post, because it'll be long winded.

It's a miracle... she can walk!

















So to some strangers, it's mind blowing to them that they can see me in a wheelchair at the mall during the day, and then see me walking at night.  But during the day, when I’m wanting to do the whole mall, my wheelchair is my savior. At night, if I’m just going into one store quickly, I don’t need it. And sometimes this baffles people. And that’s something I’m going to have to learn to live with.




Friday, July 21, 2017

Is My Coke Really Diet?

If you have Diabetes and you're a soda drinker, there's one thing you know; You're often finding yourself questioning whether the drink you were served is really Diet or not.

I'm the annoying customer always asking my server, "It's Diet, right?", to which they always respond yes... which often leads me to wonder if they actually know that it's really Diet or if they're just in a rush and want to please me.
With Type 1 Diabetes, a regular Coke will cause your blood sugar to skyrocket. For someone like me, who's prone to ketones, that could potentially put me in a really bad situation. Actually, if we're looking at it technically, it could kill me. A mistake like that can technically throw anyone with Type 1 into an uncontrollable downward spiral.

A while back in a Type 1 Support group, I learned a genius trick. If you use your meter and put a drop of the drink in the test strip, you can find out if it's really Diet, or if it's an imposter. I have the Bayer Contour Next USB. If it's Diet, for me, it gives some sort of reading like 1.1 or 1.2 or something around there. If it's not.... what you see in this next photo will happen..



PS- For my US readers who don't use mmol/L, with Diet it was 19.8 mg/dl, and with Regular it was 288 mg/dl.

However, I've been told that some meters don't work properly with this. Someone told me that for their meter, it reads "Error' for both Diet and Regular. In this case, I was just given some great advice by a fellow Type 1 on Facebook, Diastix! When I asked permission to use his screenshot in my blog post, he asked me to share his hashtag with you guys; #WrestlingTheDragon. So here's to spreading around Anthony's hashtag! Thanks Anthony!






















So yes, tonight McDonald's tried to kill me. Okay, I'm being a little dramatic. But I am so grateful I tasted something off and decided to do the test, because otherwise I would have been in for a rough night that could have led me to get really sick. Luckily, this trick is relatively widespread in the community and a lot of people know about it but, it can never hurt to share it a bit more!

So here's a little plea to servers in restaurants of all kinds, be mindful when someone asks for a DIET Coke. They might not be on any sort of diet, it's not a joke, and it might be for health reasons. Be as careful as you can even though we know you're in a rush. We rely on you for some serious reasons! And we apologize about asking you to triple check that it's Diet :)

Saturday, July 15, 2017

Valued Voices #4 - Chris Ruden

Last week at the Friends for Life conference, I had the pleasure of seeing Chris Ruden speak. This week, I had the pleasure of interviewing him for you guys. He is one of the most incredible people I've had the chance to meet, and I hope you find his words as inspiring as I do.

So first, I just wanted to start of by saying hi. Second, I wanted to tell you that it was amazing seeing you speak at the conference, and also wanted to thank you for doing this little interview with you.

I’ll start by letting you introduce yourself, and tell us a bit about what you do.


Chris: My name is Chris Ruden, and I am probably the only 7 fingered, diabetic, disabled, powerlifter, motivational speaker, and online fitness and nutrition consultant that you know. And if not, that other person is lying, because that is definitely only me.

So I train people from all around the world. I’m also a powerlifter, getting into bodybuilding, modelling and all kinds of stuff, and I speak professionally.




Do you find that your childhood was different from other kids because of being “different”?

Chris: Absolutely. 100%. I had to grow up quicker than most, you know, mentally. I had to learn how to be okay with what people say, and how to choose my reactions wisely. So, a lot of it was was the mental burden of being different, even though everyone is different. Being physically, or seen as different, it kind of just forces you to understand that everyone’s different. I don’t think that it was necessarily a bad thing. Some of the stuff I went through really sucked. But I think it was a necessity for me to become who I am. Because I’m a big believer that a lot of people don’t experience enough pain in their life to make a change, or to do something, so they just kind of coast in this purgatory of a life where it’s not good enough to change. It’s not good enough, it’s not where they want to be, but it’s not bad enough to change so they’re just coasting.



I’m curious, were you powerlifting before you were diagnosed with Type 1, or did you only start after your diagnosis?

Chris: I started after I was diagnosed with Diabetes (at 19). So I was hitting the gym here and there, you know, it wasn’t until Diabetes that I made the full-on commitment to fitness. And I was going to be a lawyer. Until I got diagnosed with Diabetes. So I made an entire life change because of my diagnosis, which is why I stand by that whole message, “Sometimes the obstacle in the path, becomes the path.” What happens to you is the right path. Lots of people think that it’s screwing up their dreams and their goals, but sometimes you have to be realigned with what you need to do in life. And sometimes what you need to do in life is become an advocate for your condition, or an advocate for what happens with you.



When you started powerlifting, was there a learning curve to to making sure that you didn’t go too low or too high? Or were you already kind of used to that because of going to the gym?

Chris: I was already kind of used to it but I didn’t know it played that big of a factor until I had a really bad low, and it screwed up my whole workout and I was like, “Okay, well that can’t happen.” Then I had a bad high and and I was like, “Well that can't happen either,” so I kind of developed these lines of moderation. And it was through experience. It probably would have been smarter if I knew about it before, but definitely, you learn in the process. So now when I teach people, I kind of help them with that.



Can you describe one, or some of your clients that have really left an impact on your life?


Chris:
Absolutely. I have a few that come to mind. The first one was David, the 11 year old with Cerebral Palsy. He couldn’t really walk straight, and in a few months he was running on the beach. Not perfectly, but he was running. He was just so positive and giving up wasn't even an option. For most people it is, but for him it just wasn’t. He was 11 years old and he had a better mindset than people I know double, triple, quadruple his age.

Another lady was an 85 year old woman named Shirley, she relapsed from cancer twice. She could barely get up out of a chair when she came into my office. Within a few months, she was like, standing up and pushing weights over her head, and she wrote a letter to the gym saying “Chris gave me my life back at 85 years old.”

Another was a Type 1 named Taylor. In three months she lost 21 pounds with Type 1 Diabetes, and she went to show people that weight loss is possible. Losing body fat is possible, even with insulin, and all these other issues that happen, and all this. So every client I work with, I get pretty personal with. And I love to see them progress as far as they’re willing to take themselves. I don’t believe that there’s an ideal body. I don’t believe that there’s an ideal physique, or an ideal strength. It’s personal for everyone. I’m just here to help.

Chris and David


We all want to know, what is your favourite low snack?


Chris:
Oh, Frosted Mini Wheats 100%. I absolutely love Frosted Mini Wheats, but it is also the worst low snack, because I can overeat the crap out of them.

We all know that no one can be positive 100% of the time, but you seem to do a pretty good job at it. How do you lift yourself up when you catch yourself starting to feel down?

Chris: So, I’m not a big believer in the whole positivity thing. I’m more of a realist. And in being a realist, you understand that being negative doesn’t help. Even in a crappy situation. You wreck your car, and something happens. It happened. You can’t fix it, and being negative, crying, doing all this other stuff, isn’t going to help. So what can I do to help? Well, I can start thinking of the things that are going to help me and move forward from here. We have the ability to control our reactions to things. That’s the one thing we can always control. We can’t control anything else. We can always control our reactions. Sometimes it’s hard, yes, but we can. And that’s just constantly in the back of my head all the time.


Do you have a favourite motto?

Chris: I have a few. The one I created for my own business is “Limitations are self-imposed.” You create your own crap. And if you want to live in it, that’s your choice. Also, “You teach best what you need to learn most,” is definitely a big push for me. And Michael Jordan spoke, “I hate losing, more than I love winning.”



Which social media platform is your favourite to raise awareness?


Chris: Instagram. Definitely Instagram.

You can find Chris on Instagram @chrisruden, on Facebook here, or at his website, www.chrisruden.com.