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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