Sunday, August 27, 2017

Valued Voices #6: Chanel White - The Tube Fed Wife


Chanel White is a 25 year old woman from Seattle. Shortly after getting married to her high school love, she was diagnosed with Systemic Scleroderma. Scleroderma is a rare, autoimmune disease where the connective tissues in your body literally begin to progressively harden.  In those with Systemic Scleroderma like Chanel, typical life expectancy is 11 years from onset. She had bone marrow transplant a little over 230 days ago in an attempt to slow her progression. She is also a keynote speaker, blogger, and most importantly, fellow lover of cats. You can find her Facebook page to keep up at www.facebook.com/thetubefedwife.

Chanel and her husband Noel at their wedding
Chanel's kitties, Calliope and Nova


Hi Chanel! Before we get started, I thought I’d let you introduce yourself and tell us a bit about what you do, and what you’ve been through in the last few months.

Okay, well let’s see, I’m Chanel White. I am 25, almost 26 this month, and for the past couple of years I’ve been battling Autoimmune Disease (Systemic Scleroderma), and going through some very intensive treatments. Seven months ago I had a bone marrow transplant, which unfortunately I since relapsed from. I saw a lot of awesome improvements after years of immune suppression and chemotherapy and all of that jazz that just didn't do anything. So the bone marrow transplant, I really did see a lot of improvement but unfortunately symptoms started to reoccur in about 5 months or so. So I’ve restarted some kind of lower dose treatments, and I’m back on a feeding tube, and just kind of doing the daily grind again. And unfortunately my blog and social media has been on the back burner because I started working, and stuff got good. So now I’m trying to manage chronic illness and work which has been a little too much to tip the scale between that and social media so, there’s the really long-winded explanation. 
pre-transplant and post-transplant

Chanel with her bag of stem cells

When you started sharing your story online, did you ever expect for it to blow up like it did?

No, not at all. I honestly just started it so that I wouldn’t have to call like, 18 different grandmas to tell them, “This was the test result.” So honestly I did it for very selfish reasons. Cause I just didn’t want to have to call my whole family. I just wanted to be like, “Quit asking.” Or if I was at church when people were like, “Oh, how’s it going?”, I didn’t want to explain to them “Life sucks.” I just wanted them to read it on a blog, so I wouldn’t have to tell a bunch of people. And people started reading it that weren’t my family and I was like, “Oh, this is weird.” And then I realized I could actually make an impact on other patients and kind of help them through their journeys by showing them they weren't alone through my journey. And I just started doing more of community outreach, as well as telling my story, which worked out really well, because it connected me with a lot of awesome people.



So what’s it like for you to be a public figure? Have you had any negative experiences?

Oh yeah, I mean that comes with the territory. Like when you’re sharing your life, there’s always gonna be people who just feel they're entitled to your life when you share it. So you know, if you put it out there, you’re also putting it out there for criticism and for conspiracy theorists, and also people who think you’re like Jesus.

So I’ve definitely had negative experiences. I’ve been stalked a couple of times. I’ve had death threats. I’ve had people who legit think I faked my entire bone marrow transplant, which just cracks me up, because I do not have the money to hire all those fake nurses. When you get like, 23 million views, there are going to be people who are like, “You should die.” Okay, cool, thanks bro, I’ll work on that.

There was only one that really hit close to home with me, and it was when this woman really in depth started contacting places that I freelance write for. Because to be fair, she honestly thought I was a fake. And there’s nothing I can do. I share very openly, and very honestly, and I understand that my journey is crazy. Like, I’m the first one to know that it’s crazy. But unfortunately this is my real life and some people just don't get that. So yeah I’ve definitely had negative experiences but I think the positive outweigh the negative.



What do you find some of the most positive parts of being a public figure?

I think just the connections I make, number one, because I’ve met some of my best friends through being a public figure. I think knowing that I am making a difference, like I’m not just gonna be a shout into the void. Someone in their life is going to remember me and remember my journey and it has made an impact on someone. And that means a lot to me, when people message me and say, “Hey, you’re the reason I got out of bed today”, like I think it’s really cool. It’s also kind of weird, but my story is doing something. It means something. So that’s kinda nice. 



What has it been like sharing the process and aftermath of your bone marrow transplant? Are there ever things you don't want to share?

I feel like I’m pretty open with everything. There’s not really a lot that I feel like I don’t share. I think the thing that I hesitate to share, and I think this is a theme throughout any kind of treatment that comes to an end, is that you don't feel happy when something ends. You feel like, almost unsatisfied. Like, I know when a lot of people finish chemo, or when life starts to go back to normal, like you’re done. Your time off from work is over, and all of the sudden real life starts, but you're not really that much better. There’s a lot of anxiety that comes with that. And you were so accustomed to living life on your own terms, and your illness dictated your life, and now suddenly an employer is dictating your life, and you can’t just sleep in anymore. I think maybe that’s the thing that I hesitated to share because people will think, “Oh, you’re a whiner. Everybody works.” But like, when you've been accustomed to being in treatment for so many years, you really go into a deep depression when you have to go back to work, because you realize your time is not your own. Not that it ever really was, because illness dictated it, but still, it’s different. It’s a hard concept for someone to grasp that hasn’t gone through treatment, and haven't had years of life just like, sitting on the couch. So it’s definitely a rocky transition going from treatment back to real life. 


Since losing your hair after the transplant, I know you’ve tried some wigs. Which one has been your favorite?

I have a rainbow wig that I really like that I wore for my 100 days post-transplant. But my favourite everyday wig is one that looks like that looks like just really typical wavy, brown hair that’s kind of shorter. It’s like bob length. Because the long ones, no matter how much I love being fabulous and having long hair, they get in the way. I was never really that into wigs though because they were itchy and hot, but I wore them for special occasions. 

100 days post-transplant


Did strangers treat you differently in public the more your illnesses started to become visible?

Yeah, I think so. You know, it’s funny, because before my transplant, and before my first year of chemo.. before I ever lost my hair, I was on oxygen, and a feeding tube, and I had my port accessed at all times. Like I was visibly ill, and people really did not care. However, the day that I lost my hair, all of the sudden people cared. And that to me was really frustrating, because I was like “Wait a minute. You didn’t care last week when I was obviously still extremely ill, toting around essentially life support. But suddenly I lost my hair and now you care?” So that was kind of a shock to me, to realize where empathy kind of stems from, and it really is all about being bald. 

Chanel in June 2015


Chanel in September 2015
I had a lady one time when I was standing in line at a store, and it was right after I had lost my hair the first time, and she purchased my whole load. And she was like, “Oh honey, I’ve got it. Merry Christmas." And I was not accustomed to that. Even being on oxygen and with the feeding tube, being visibly ill, nobody would really treat me different besides maybe they would hold the door open for me? But then I lost my hair and all of the sudden some people were like, “Let me buy you this”, “Let me do this for you”, “Have the right-of-way in traffic.” It was very odd. It’s just so weird. 



It really kind of just shows me the stigma of society that cancer is the only important thing. Because obviously people associate being bald with cancer, even though chemotherapy is used for a plethora of things that are not cancer, it’s just the most common. And so suddenly people think you have cancer and they treat you like royalty which was odd to me because I had obvious medical devices, but it’s only when I started losing my hair that people really jumped on the “Oh please let me pity you” bandwagon. Which is not what I was asking for. So it was very odd. When you go from invisible to visible illness, people definitely treat you differently, but there are like, different levels, which is weird, that I didn’t realize. Cause people treated me a little bit different when I was on oxygen. They treated me a little bit different when I was attached to my port or whatever, and then when I lost my hair it was a whole new ballgame.

It’s also especially awkward explaining to people that I don’t have cancer, but I was going through chemo, and all of the sudden they didn’t care anymore, and I was like “Oh, thanks, that’s really nice.”

Chanel in February 2017

What’s the most irritating or annoying comment you get regarding your illness?

Probably “Get well soon!” Cause people don’t really understand that that’s not how it works. No, but in all reality, it’s more something like trying to compare an illness, like “At least it’s not cancer.” Because people don’t understand illnesses are not comparable and they don't go up on a venn diagram where this is worse than this. It’s probably just the things people say trying to be nice, but it’s actually just more harmful to the patient. Actually, probably one of my least favorite things people say since going through my transplant is they’re like “Oh, but it wasn’t a REAL bone marrow transplant” or “Oh, but it wasn’t REAL chemo.” Because again, people only  associate things like these to cancer. So they think that what you’ve been through isn’t the exact same thing, even though it’s literally the exact same thing to a tee. So that was very frustrating, because somehow people find a way to belittle your treatment just because it’s not what they associate it with.

Chanel in January 2017

 
How do you feel about referring to your illness as terminal?

I mean it’s a true statement so I don’t have anything against saying that, but I think there are people who run around and say it like it’s some prize to be won, as if they were the sickest person. I know an acquaintance who will say it every chance she gets. On my medical paperwork I have terminal as a diagnosis code. My doctors refer to my illness as that. And yes, I refer to myself as that when someone asks my prognosis, or I’ve made posts about what it’s like to live with a terminal illness. But I don’t like to overly draw attention to that fact, even though it’s true. Just because I think there’s a lot of stigma around “terminal” and what it means, and people don’t always realize that terminal doesn't always look like someone dying in a hospital bed.  So I’ll use it if I need to because it’s factual, if I’m referring to my prognosis. If not, I won’t say “Oh, I’m terminal”,   I’ll just say that I have a chronic illness.



So you have your own support group that you started at home. What kind of ways would  you recommend to others who want to start their own support group in their city?

You know, I actually started that support group through a hashtag. So I just hashtagged #SeattleSpoonies on a bunch of stuff, and then looked for other people who may have used that. And then was like “Hey, if you’re in my area, show up.” And people did. I was so surprised. So I would say just really work on having a strong social media presence, and then work on community outreach through hashtags on your social media.

Chanel's Seattle Spoonies meet-up group

And lastly, how are you doing now? And what are your current goals and plans?

I mean, I’m doing okay, apart from a few organs deciding to re-crap out. Right now it’s just juggling the doctors, and a job. But luckily I’ve got a really chill job that’s very flexible. They let me work from home when when I need to which is great. So I’m basically just working on keeping my head above water, honestly. It’s hard, because when I was on disability and I was on my own schedule I could just say “yes” to everything. And right now I realize, I can’t say yes to everything. So I had to turn down a really awesome opportunity to keynote which kind of broke my heart, but dealing with health and a job has been a little tricky. But I really just want to live in the now, and I just want to move forward. 


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.