The last six weeks have been a kick to the gut, but unlike past crises moments I tried turning to an inner strength I haven’t called on in a long time. && like many times before I crumbled before I stood up stronger. I let myself sob, weep, wail- whatever my emotions called for. I reached out when I needed to those I trust most && didn’t let myself isolate. But I knew I needed to be the one to pull myself up. I let self care rule my life && although my gut may hurt I’m not in the hospital with that gut ruling my life. (For my gp loves you know what an accomplishment that is.)
I knew that bottling has only ever led to bad decisions, && even relapse. So, I said my hurt when it came. I let my emotions have their own space in my life, knowing it was the only true way to make sure they didn’t rule my life. I wrote, a lot. I read, a lot. I talked, a lot. I let self-reflection be as real && painful as it needed to be. I have never before encountered such a life-changing event so ‘alone’ && I have never been so terrified. I’ve also never proven to myself more that all I need in life is the space to be the most authentic && honest version of myself.
At some point I had stopped relying on my inner strength. I knew if I fell, someone would be there to pick me up. I forgot that inner-strength is like any other muscle, if you stop using it, it will atrophy. But my inner strength has been getting the workout of its life these last 2 months. && I feel it. I feel like I emerged not a phoenix, but a dragon. I found a way to harness the flames that had licked at my heels; && now I could control the fire that had devoured me so many times before.
Listening to: Boyz II Men, End of the Road
It’s 2017 && for the last 7 years I’ve been working in the diabetes and eating disorders fields to educate diabetes educators, and more specifically, to re-educate Endocrinologists about the harm their diabetes education is doing to a large percentage of people with diabetes. In the last few years I’ve seen the language, “In the past we’ve seen” adopted into the talks given at conferences about diabetes education indicating that the negative behaviors were mostly in the past- something we as a community were recovering from && today I learned that ignorance and misinformation is still very much alive in the Endocrinology community, oh goody. Following is my first hand experience at my new patient appointment for an Endocrinologist.
My personal Endo has retired from seeing patients to pursue research, a blow for all her patients but a boon to the Medical research field. Wish you well Dr. C! So I made a new appointment with Dr. B who was covered by my insurance && had great patient reviews. I never go into a doctor appointment blind. I knew something was off as soon as the medical assistant started asking me questions about my diabetes history.
Medical Assistant: “You’re a type 1 diabetic?”
Erin: “Yes, for 18 years.”
Medical Assistant: “So how long have you been on insulin?”
Erin: “uhm… 18 years. I”m a type one diabetic.”
Medical Assistant: “So have they ever tried not having you on insulin?”
Erin: “WHAT!? I’m a TYPE ONE Diabetic?!”
Medical Assistant: “Have they ever tried you on glipazine?”
Erin: “That’s a type two drug?!”
Eventually she asked “Are you here for your really high blood sugars” because she saw that I had a high blood sugar last time I was in the hospital because they short changed me by 10 units on my Lantus. This is when my Mama Bear, who always comes with me to new Endo appointments, finally jumped in && politely told the woman where she could shove her misinformation! I was actually there because I’ve had so many low blood sugars in the 20s, 30s, and a couple of actual “LOW”s.
Once she left Mama Dawn && I took a couple of deep breaths to relax. Don’t judge a book by it’s cover we kept saying. Maybe he was unaware that his medical assistant didn’t seem to know the difference between Type 1 and Type 2 diabetes… I mean we only spoke to her for 5 min and it was clear to us but who knows? Maybe she’s new we rationalized… But in the pit of my stomach I knew this was a bad sign. It’s always a bad sign. The medical assistant is the gate keeper to the doctor && often times I’ve found a key piece of information about the Dr. him/herself. This time was no different.
A nice enough seeming man walked in. He extended his hand. Im Dr. B. You’ve had diabetes for 18 years? Well then let me explain to you what the difference between basal and bolus insulin is. You want to stay on your pump you say? Well “Lantus and a pump work almost the exact same” yup, that’s a direct quote. && so inaccurate Dr. B. He gets the printout from my meter.
Dr B: “You seem to eat at all different times of day. Im missing consistency.”
Erin: “Yeah, because of my gastroparesis, I eat when my stomach empties && when I’m not nauseous rather than on a set clock.”
Dr B: “So the first thing we’re going to do is stop that. You need to eat at the exact same time every day.”
Erin: “uhm… and if I’m nauseous?”
Dr. B: “If you stabilize your sugars your gastroparesis will get better.”
Erin: “uhm… my A1c is in the 7s…”
Dr. B: “that’s addequate, but it needs to be better.”
Dr. B: “I’m going to give you a diet plan you need to start following. It has a set amount of carbohydrates you cant go above it at any meal. The word for any diabetic success is consistency. Start eating the same carbs at the same time every day and don’t deviate. Say it with me, Consistency”
I looked up at Dawn at this point, was this really happening? This guy was literally the walking epitome of everything I taught against. He was harping on a set standard of rules && in fact at one point he even called them his rules and handed me a set of sheet including his list of “Safe foods” what are your Unsafe food Doc? What happens if I want to eat a piece of cake that goes above your set carbs limit? && did I mention that all this conversation happened after I mentioned that I both worked for && had a history with eating disorders.
Why are diabetics 2.5 times more likely to end up with an eating disorder? If I didn’t work in the field would I know this wasn’t a healthy way to look at food and a healthy relationship with my diabetes and insulin? How can we expect to get expert care by the modern Endocrinologist when he’s still peddling a 30 year old diabetes education?
This is my first year participating in Diabetes Blog Week created by Karen of Bittersweet Diabetes. So of course im joining on the fourth day with day 2’s prompt. But like a great friend one hash tagged me #LadyLateIsOurLifestyle. 😘 I still think this is important information to share with other diabetics && an important community building activity to try && take part in. (Even if I’m not the timeliest..)
Tuesday Prompt: The Cost of a Chronic Illness – Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care.
So I want to take this prompt in a slightly different direction. (I know shocking, Erin not great at following directions!) Since all my genius DOC bloggers have covered many important issues on how cost impacts diabetes care, including some amazing posts on the non fiscal cost of diabetes. Read my friend What Sarah Said’s post on loosing our friend Ish: The Cost of Diabetes.
But I’m going to discuss how the fiscal cost of diabetes care has affected the rest of my fiscal life. Now if you regularly follow my blog or know me outside of my double ampersand persona than you know I am not your typical diabetic. Now I don’t believe in normal. And like they say, Your Diabetes May (&& definitely WILL) Vary. But my story is more like your diagnosis will vary. Type 1 diabetes is not where the chronic dairy stopped with her many blessings. By the time I graduated from high school I was a Type 1 diabetic with epilepsy && a bona fide and roaring eating disorder, a nasty battle with Diabulimia that had led to many hospitalizations and the diagnosis of peripheral neuropathy in my feet. By the time I graduated college I had added PCOS, and severe gasteoparesis to that diagnosis list. The severe GP landed me in the hospital several dozens of times.
My diabetes and that roaring eating disorder of mine had both gotten under control. But the stay in an eating disorder treatment center (Pre Obama Care && the passage of the mental health parity law) drained my parents of my college savings. Not to mention all the money one doesn’t plan on spending on your two small children when you hold them in your arms not knowing that one day soon they’ll both be diagnosed T1D.
I struggled for years – many more than the average college stay – due to attempting to get a higher education in between hospitalization stays && surgeries. Four to count. But I refused to give up. I walked across the stage at Seattle University tears streaming down my face && a Thanks Mom painted on my cap, knowing like many chronically ill kids I never could have done this without her.
But I left school with much more college debt than I was expecting due to staying for so many extra years && spending my afore mentioned savings on treatment. I also aged off my parents insurance during this time. I bought insurance on the Marketplace, created by Obamacare. A system that only exists for people like me, independent contractors or those that work at small companies because our last president is not insistent on killing a large percentage of his constituents. (Please dear god Sir, come back!!)
Even though I have never been without insurance I have been hospitalized several dozens of times. Each of those trips is a 10,000$ trip. There are medications, lab fees, tricks and tips that insurance is liferallly updating constantly to get out of paying as much as possible. Leaving that medical debt squarely on my shoulders. To date I have paid out tens of thousands of dollars in medical debt since turning 18.
But when I went with my boyfriend less than a month ago for him to buy a car I got an earful on my credit because I didn’t have any “big purchases” among all the other issues. See student && medical debt listed earlier. But how is it that I have friends who have blown their money buying new cars or ATV’s and it’s been a boon to their credit but the dozen grand (at least!) that I’ve put to keep myself alive (that I shouldn’t have to pay in the first place!!!) doesn’t even count for shit when it comes to my credit?!!? But god knows it counts against me if I let one default. How is this a system in a country that prides itself on justice and democracy? Cause this doesn’t sound democratic or just at all.
If you can count your Mazda && Impala as an important purchase that adds to your credit than I should certainly get to count my medication && IV’s.
Check out this interview with two of my favorite people && diabetics on the planet! Stephen gave me my first && gift after I launched my blog && Leyla is one of my co-organizer of the National March For Health. They are both AMAZING human beings and this is an interview worth listening to!
Wow. What a turn of events. Last Thursday, when Leyla Mansour-Cole and I recorded this interview, we were less than 24 hours away from the unexpected move of the Speaker of the House of Representatives pulling the Republican’s “repeal and replace” health care legislation from consideration.
Still, there is a lot left to debate when it comes to health care in America. And that’s why people all over the country will be participating in the March for Health Saturday, April 1. So many of us are affected by the way care, drugs, and medical technology are delivered in this country. That’s a lot of what we’ll be talking about in this episode.
And don’t forget to listen to Wednesday’s companion interview on March for Health with Cara Richardson. Together, these two are the model of what happens when you see an important issue and throw yourself head first into…
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When you wake up from a low binge my first thought is still OH F**K. Seven years ago I would have been obsessing about the calories I shouldn’t have “had” to eat. But now my first thought is what is my sugar. I don’t just call this progress. I call this recovery. In any other recovery situation you use the word binge it signals a relapse. In my case it signals a 31. That’s what my blood sugar was when my boyfriend came in this morning: 31. I was attempting to eat cookies. I hadn’t tested my sugar. I could barely speak. He asked me what I was doing. I’m sure I looked like a crazy person. Shaking, mumbling, trying to shove tagalongs desperately into my mouth. “I’m low.” was all I managed to get out. He could tell this wasn’t a normal low since I wasn’t really treating it myself (or snapping at him.) Do you need me to test your blood sugar? He asked. I nodded mutely, understanding very little of what was happening. The next 30 minutes passed in a semi blur. Conscious-ish is all I can call it. Lights were on but NO ONE was home. So I ate a sleeve of cookies. More than I needed to for a low but I was shoveling food in my mouth like my life depended on it. BECAUSE IT DID.
&& THIS is why diabetes and eating disorders are so hard to detangle, to figure out, because it’s a disease wrapped around food. My entire disease circles around decisions I make regarding food. So, yes I had a “textbook binge” this morning. Eating uncontrollably, shoveling food, no awareness for the amount or taste && then this morning my blood sugar was 321. Yes, a diabetes FUCK. But you want to know what else happened last night, I didn’t die. You think I’m being facetious? I’m not. Dying from a low blood sugar- that happens. My body instinctually shoveling food to prevent that certain death? That happens too. I no longer shame and blame myself for, no one wins in that game. So instead of waking up mad at myself for eating more calories than other people or the rest of the bullshit gammet that used to run through my head; I test my sugar, I correct && I move on with my day. That’s my recovery: Imperfection, a broken pancreas && true peace with both.
It’s #nationaleatingdisorderawarenessweek && #itstimetotalkaboutit && for me the things I want to talk about are the two things that make me a complete #girlboss in this picture. The two things that I am proud of myself for. That blood sugar && the fact that I feel pride and not simply acceptance is a true sign of my recovery journey. The second thing is that Port Scar. That ones newer… && harder for me to be proud of… harder for me to talk about. But it’s part of my story now. && it’s just as beautiful as that beautiful “perfect” blood sugar.
So honored to be included on this list Sarah!
For those of you who may be unaware, Valentine’s Day isn’t the only holiday happening this week. An occasion inspired by Leslie Knope, my favorite fictional female politician, Galentine’s Day is for the ladies. Typically celebrated on February 13th, this is a tradition dedicated to recognizing and honoring the women in our lives that we love and admire. So in light of this special day, and regardless of the fact that I’m a few days behind schedule, I thought I’d take the opportunity to reveal some of my diabetes girl crushes, because let’s face it, there are SO many incredible ladies living with T1D and they deserve to be held up and recognized for how wonderfully strong and inspirational they are.
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I’ve had gastroparesis since I was 20, a consequence of my diabulimia. It’s something I’ve lived with for over half a decade && just like my neuropathy, it’s been an inconvenience, a burden perhaps, but alas just another part of my life. When I turned 25 I developed cyclic vomiting syndrome, which basically means when I start throwing up, I can’t stop. It caused a massive flare up in my gastroparesis causing 3 esophageal ulcers to form, which were aggravated every time I threw up which was all the time because I had gastroparesis being aggravated by cyclic vomiting being aggravated by gastroparesis. It was a vicious cycle and it seemed never ending, literally. It got so bad that I would start throwing up blood, and the thing with cyclic vomiting is I just couldn’t stop. So every time I got to that point my mom would have to take me to the hospital for IV fluids and anti-nausea medicine because no amount of under the tongue zofran was going to cut it.
It’s been two years now. I’ve been hospitalized 39 times; during the worst of it I was going in every week at times. Eventually, it became too hard to get an IV in me – my veins were too small and full of scar tissue from all the past IV’s – && the decision was made for me to get a port. A port is a small metal appliance beneath the skin with a catheter running from it to a vein. It sits on the right side of your chest, and when you go into the hospital they just hook right into it. Getting an IV went from an hour-long experience to a 5 minute one. But it was a decision that took me almost a year to make because it means a very visible scar on my chest, and when people touch the port they shudder. I laugh when this happens because comedy is the right response; if you don’t laugh, you cry. But that’s my body… you’re shuddering at my body. I had to reach the point where I realized I couldn’t keep holding onto that picture of who I was pre-sick girl, because let’s face it, I’m a sick girl now. Accepting that made my life infinitely better. It didn’t limit me or label me, it freed me. && honestly my life would have been so much easier if I had said yes when my doctor suggested the port the first time, a year before I finally consented.
I’ve also thrown up so much, so hard && so repetitively that the bathroom floor became the most comforting place in the world. When I laid my head down on the cool tile and stopped trying to force myself up, I always felt better. Should most people lie down on the bathroom floor? No, probably not. But the truth is, I keep mine exceptionally clean && I’m not most people. I’m a girl with many chronic ailments. Being a sick kid doesn’t define me, it’s not who I am, but accepting it as part of me does help me accept the realities of my world with a little less judgment && a little more self love.