I can bet my lunch money most people in the DOC know about what transpired this week, when CrossFit decided to tweet a gem of an image depicting a bottle of Coca-Cola with the words “Open Diabetes” next to it. First responders got so offended by the fact that they didn’t differentiate between types of diabetes, they played their type 1 card. After all, we type 2s are the ones that should blame ourselves, we are guilty as charged for our type 2 diabetes; type 1s, on the other hand, get a free pass. People cried so hard, CrossFit apologized… or tried to… and made things even worse by adding to the stigma we have to face every day. I’m not on twitter anymore, but I could see that CrossFit has now decided to play the diabetes paladin, and is sharing all kinds of misinformation about type 2 diabetes, but that’s a story for another day. But the problem is not CrossFit. The problem is us.
I could say I’m outraged, but I’m not. I could say I’m sad, but I’m not. I could say I’m full of negative feelings, but I’m not. I’m just tired… I give up, or at least I feel like giving up. I’ve been part of the Diabetes Online Community for 8 years. I’ve participated in conferences, meetings, committees, etc. I have tried to come up with an idea to make T2s more visible in the community. I have taken time off from the madness to regroup. A while ago I decided to move from the advocate role to the patient role because I couldn’t, in all honesty, advocate for anyone if I was doing so poorly with my diabetes treatment. But I’m still an advocate in many ways; for myself, for my close friends who have to live with type 2 diabetes.
But the Diabetes Online Community is just what it is. A battle of types; the constant debate of who’s more worthy of attention, the have’s and the have not’s, the auto-immune vs. the lazy, fat ones. And I just had it today. I’m not entirely convinced that some people affected by T1 diabetes really grasp the fact that the struggle is very similar for T2s regardless of how it happened. That’s why I decided to choose my battles wisely. I will participate in anything that will help me, but I will refrain from participation if I don’t feel included. I will concentrate on my own care and be my own advocate. I can’t advocate for people who stigmatize me or any of my fellow T2s, and I don’t think I should get in any kind of argument to justify my needs as a patient.
We need care and access no matter what. What difference does it make what type it is, if at the end of the day the risks and complications are the same? But for type 2s, in addition to everything we have to deal with, there’s also the shaming and the stigmatizing. It’s like you get beat up every time you ask for help. In the end, I am the one responsible for my diabetes. I can’t expect people who lack compassion to do anything about it or understand how I deal with it.
But I’m not giving up, or removing myself from the equation. I’ll stick with my fellow T2s, even if it’s just to share what we feel and give each other support. I’m also sticking with them because I’m not a perfect patient, and I’m fat… and sometimes lazy, but my diabetes is caused by so many other things. And that should be my priority, take care of myself; not trying to convince others that I deserve compassion, too.
Among the many topics that were discussed at the Diabetes UnConference, womanhood was one of the ones that really resonated with me, for many reasons. But when you’re given the option to discuss diabetes and menopause vs. diabetes and getting pregnant, and you’re in neither of those groups, what do you do? You just sit and listen, in limbo…. with not much to contribute. At first I was OK because I have made peace with my barren womb; then I realized holy shit, I’m not alone and I have to talk about this.
I got married the first time when I was 24 and I thought it was going to be your regular agenda: marry, have kids, live happily ever after. Kids didn’t happen, it didn’t matter how much I wanted them. Then my endocrine system waged war against me and I spent, oh, so many sleepless nights figuring out a way to fulfill my motherhood dreams. I had a very well organized set of bookmarks that ranged from things I could do to get pregnant, fertility forums, and lastly adoption. None of it materialized, then the marriage was over, and I was kind of grateful there wasn’t any collateral, if you know what I mean.
The second time I got married, I already knew what my endocrine baggage was, and while getting pregnant was still a dream, it wasn’t my top priority, or at least I knew it was going to be hard work. I had my days when I got emotional about the fact that people around me were reproducing and I wanted to have a child so badly without success. Some other times I gave myself the pep talk, or I simply listened to what other people had to say.
Then one day my ex-husband and I decided to give fertility treatment a try, but we only got to phase one, the Clomid one, the one where you cry because the store doesn’t carry your flavor of ice cream, and stopped because a new job, new insurance, etc. Adoption was discussed briefly, but no real action was taken. That marriage failed, too. And some of the last words I heard was that not getting pregnant was all my fault for not doing what I was supposed to. After all, I knew what to do… so what the heck was my problem? In the end I was just glad that, once again, there was no collateral.
Fast forward a few years. Call me a repeat offender, I’m getting married for the third and LAST time in May. The guilt I carry for not having a properly functioning reproductive system is out of this world. Here I am, with the man I believe would make the best father for my children, and I don’t think it’s ever going to happen. People tell me never say never, but let’s call things by their name: I just turned 40 and I have type 2 diabetes. What kind of pregnancy would that be? What would happen to that child? It’s freaking scary. And he understands, my fiance does… and when he says he doesn’t care, I truly, really believe him. But we’re awesome people, fantastic people… without children? That’s just plains sucks.
So rewind to last weekend in Las Vegas, sitting in a room with a bunch of women, most of them in their reproductive age, and feeling that you’re not here or there, and you look at yourself, curse your diabetes and think this shit is hard. And what makes it harder is the fact that you bottle it up and let it fester and rot for years. You learn to dismiss it, you learn to tolerate it and it steals a little bit of your spirit every single day while you try to play the fool.
But then you find your kindred spirits… because whether you like or not, we have this diabetes thing in common, and we know what it feels like; insulin resistance, PCOS, all the ingredients in that beautiful cocktail some doctors call metabolic syndrome. And you don’t really want to whine about it, but dang it… sometimes you just have to whine about it. Because you know what? It’s not your fault, it’s not that you’re not trying hard enough… you were just dealt a crappy hand, and you need someone you can relate to.
noun | com·pli·ance | \kəm-ˈplī-ən(t)s\
: the act or process of doing what you have been asked or ordered to do
: conformity in fulfilling official requirements
: a disposition to yield to others
Keyword being ordered. Really? You gave me an order? Do doctors give us orders or recommendations? I prefer recommendations. Maybe I’m a rebel, maybe I question authority more than I should, maybe I’m adult and I only follow orders from my boss—and sometimes from my Mother. Who knows… but the word compliance has been thrown at me so many times by my primary care doctor, and it only adds to another fancy word we love in the diabetes world: guilt. I don’t like the word compliance when it comes to my diabetes; the doctor tells me I’m not compliant and I feel like I’m going through disciplinary action.
But why do we hate the word compliance so much? A few guesses for me…
- Managing diabetes involves so much more than following a bunch of instructions from your doctor. Of course they know what you’re supposed to do, they went to school for that crap! I respect my doctor, and her knowledge, but when she talks to me like I’m a robot… that is not cool. I’m not a kid, stop telling me I didn’t do my homework correctly.
- If you deal with not only one, but two or three (or more!) chronic conditions that require day to day tasks, it can get pretty overwhelming. Sometimes you forget your medication, sometimes your life is so hectic you don’t prioritize too well, sometimes you just want to say eff it. Or at least that’s what happens to me. Is it good? Nope, but hey… sh*t happens.
- Depression, especially the clinical one, makes you not care… not one single bit. You’re down in the dumps and taking care of yourself is at the bottom of your priority list. You feel like you’re going to die anyway, so why bother. So asking about mental health should be the first thing any doctor should do with a patient that requires a constant regime for any kind of condition.
- It’s not that we don’t want to do the right thing. DIABETES JUST SUCKS! So the doctor telling me I’m not compliant leaves out the fact that 1) I’m a human being, not a machine; 2) I’m not perfect; 3) I’m freaking tired of poking myself; 4) I just want to feel normal without all the hocus-pocus.
So no, it’s not only about following orders, or fulfilling requirements. The emotional component of diabetes makes it way more complicated than that. And like my good friend Bennet would say, your diabetes may vary. A set of rules and regulations for conformity, which I associate with the word compliance, is not what we need. We won’t conform… it’s not that easy. I want my doctor to work with me on a plan that works for me. I want my doctor to ask me how she can help me achieve my goals, not hers.
Because I don’t want to be compliant… I want to be successful!
Conferences attended by members of the Diabetes Online Community have always been surrounded by intrigue. Who gets to go, who pays for what, who feels excluded, who feels included. Reading posts in My Diabetes Secret makes you wonder if this community is as united as we think. I for one have been skeptical at some point; I have felt excluded because of my type of diabetes, or simply incapable of participating to the same extent many others do. I have done my best to do a little—successfully and unsuccessfully. I am sometimes afraid to share my ideas or implement them, and I have felt inadequate when life gets in the middle of trying to be an effective diabetes advocate.
Last year I decided I needed a break. I stopped participating actively in the DOC, and I took time off projects like DSMA en Vivo to regroup and think about my own diabetes management. I don’t know if I should call it diabetes burn out… but I felt like I was trying to give too much and was getting too little in return. I may be an advocate, but first and foremost, I am a person with diabetes who also needs support to deal with the intricacies of a chronic condition that gives you no time off. And to be brutally honest, I even felt like just another person with a twitter handle but no real connections.
When I first heard about the Diabetes UnConference, I imagined it was going to be yet another event where companies would gather PWDs like cattle, or they were going to bombard us with a lot of facts about diabetes technology that would go over my head, so I didn’t pay too much attention to it. Then my dear friend Jennifer told me I should come and we could be roommates. That was the motivation I had to even think of attending the conference… to meet a really good friend in person. Other than that, my expectations were low, but I went ahead and booked the flight, booked the hotel and registered. Many months passed, and the conference went completely off my radar. I was taking a break from social media, and I wasn’t even getting emails about it. Then little by little, announcements started coming, and I started getting excited. But my expectations were still low… and then I arrived in Las Vegas.
If you are reading this post wondering how we all got there, if we were bribed or enthused by a shiny marketing campaign, let me tell you we all dipped into our own bank accounts because we simply wanted to be there (of course there were sponsors whose support we are so grateful for, but the dynamic was completely different). If you are wondering if the only people present at the conference were the big fish of the DOC, let me tell you I was glad to see so many new faces and hear the stories of so many people that have, at some point, felt like they had no place in this community but found a safe place to land. The UnConference wasn’t about learning from the experts… not the kind of experts you are thinking about anyway. It was about connecting as patients.
I won’t go into detail about what went on in that conference room—what happens in Vegas stays in Vegas—mostly because it was so personal, so deep, I would feel like I am destroying the trust we were all so fortunate to gain. But I can tell you one thing: never in the 7-8 years I have been an active member of the DOC have I come back from an event feeling this raw, this emotional, this crazy… this so freaking awesomely finally understood. And there have been a lot of tears, because it’s dusty in Las Vegas, but mostly because every single person who attended the Diabetes UnConference left a mark in my heart. And for 15 years I have kept so much inside me, about how hard it is to live with diabetes, and it finally came out with tears, laughter, tons of hugs and the most encouragement I have received in my 15 years as a PWD… person with diabetes, regardless of its type.
And we called it #VegasDust.
Photo credit: Christopher Angell
I saw my endocrinologist last week. That wouldn’t be such big news, except for the fact that I hadn’t been to his office is almost 3 years. Between life changes, insurance switchings and everything that comes with it, I was always seeing my PCP because it worked well for me. But with the recent turn of events, my pancreas being so cranky and all, I decided it was time to go back to Dr. B and I’m so freaking glad I did.
I’ve always liked Dr. B. He’s personable, he cares about his patients’ mental well being above everything else, and he never gives me the talk about how things are so horrible, I better watch out. He may get frustrated—oh, so frustrated… but he never shows it. After all, it’s not his job to make me better… he’s just there to guide and advise, but the biggest tasks are mine. So after almost 3 years, he was glad I went back, but not so glad that my diabetes is giving me a hard time.
The most important questions I had when I saw Dr. B were:
- “Did my pancreas check out?”
To which he replied that no, my pancreas is probably just overwhelmed and being stubborn.
- “When do I start with rapid acting insulin?”
To which he replied that it’s better to let the Lantus do its work and see if my pancreas responds.
So that’s what I’ve been doing, giving Lantus a chance. I’m up to 20 units a day, and my numbers—at least my fasting numbers—are getting better every day. I’m guessing I’ll find the “magic” number of units this week. However, my post-meal numbers are never under 200, and I hope they start behaving soon… (I’m low-carbing, dang it!). Based on my log, in two weeks Dr. B will decide if I need rapid acting insulin or add another medication to my metformin since Victoza didn’t quite agree with my stomach.
Whatever Dr. B says, this thing is no joke… it’s no joke when your blood sugar is 466 and you realize all hell got loose, and you want a quick fix. There is not a quick fix, not in the general sense (I don’t bolus). And it requires work, and tears, and a few swear words… and it never, ever ends.
In the 15 years I have lived with type 2 diabetes, I have not had many meltdowns. I have suffered from diabetes burnout, denial, periods of anger, periods of negligence, and overwhelming moments courtesy of the endocrine rebellion I have been subjected to by my body. But I have not cried or thrown pity parties that often. Not the kind of pity parties where I bawl like a baby because I just don’t know what to do and no one understands me. Well, I had a fantastic meltdown last night when I was supposed to start my Lantus treatment. Why? Because I am afraid of hypoglycemia in the middle of the night and not knowing what to do.
Sure, I have dealt with a few lows here and there; my worst one being a 52 mg/dL that came with some disorientation and face numbness. Other than that, my lows are very rare and not that bad—most of them have been “false” lows when my body is trying to trick me. But a real bad low where I don’t know where I am or what to do? Nope, I don’t remember that, and I am terrified.
Now, we are talking about basal insulin, the one that has a long lasting action and a starting dose of 10 units. Insulin veterans must be laughing at me. But hey… I have never used the stuff before, and my body may get crazy, you never know. I have gotten mixed stories; people telling me they were OK, people telling me that they went really low, etc. I guess we are all different, but I think my fear comes mainly from the fact that I am supposed to do bed time Lantus, I am alone at night because my fiancé works 3rd shift, and I don’t think I can rely on my cats to help me that much.
After expressing my fear to a few people, one of them actually told me something that surprised me. She said I should learn everything I can about hypoglycemia and go from there. Now, wait a minute… I thought I already knew everything I can about hypoglycemia. Are you telling me I have to do the Hypoglycemia 101 course all over again? And if that is the case, does it also mean I have to relearn everything I think I know about diabetes? I guess I will have to go all Socrates… ipse se nihil scire id unum scia… I know that I know nothing.
But I will be brave tonight, and I will take my Lantus. I am prepared with an alarm clock to test in the middle of the night, a bottle of glucose tabs, and juice boxes. What I need now is to keep on being the same brave human being I have always been and grab this insulin fear by the horns. I am sure my pancreas will thank me.
I had my regular diabetes check-up this week. The last 7+ months have been a constant battle, trying to figure out why my A1Cs have been so bad. I have been on Victoza for about a year now; it never stopped making me sick, and it obviously did not do the trick. Apparently my beta cells finally decided to take a leave of absence, and what once was a cranky pancreas, is now a full-on angry one. I wonder if I should change the name of the blog… again. J/K
My doctor decided it was time for me to try basal insulin if I was open to it. I told her I have never been afraid of insulin; in fact I think insulin therapy is a wonderful thing (you go, Dr. Banting!). Of course there was the feeling of failure… but no, I did not fail. I had a friend remind me that diabetes is a progressive disease, and this was bound to happen. I guess my pancreas gave me a good 15 years of overtime.
My butter compartment is now occupied by Lantus pens (which made me think of Lee Ann), and I will start this new phase of treatment this weekend. The doctor will decide about meal time insulin as we go. I have been pestering people with all kinds of questions (Thank you, Matt, for all your patience), and I have also been afraid because let’s face it, we are talking about insulin here. But I don’t have to be specific about that. And all those questions, all those fears, made me realize I had to come back to the only group of people who completely understand what it is like to live with diabetes. Starting insulin for me is like having to relearn everything.
I realized that I was right… the DOC has kept me in check in one way or another, and I need the community from which I have learned so much. At some point I felt withdrawn and probably overwhelmed, so I left. But after seeing my doctor and having so many questions, I realized I needed the support. And I also need that daily reminder that when dealing with a chronic disease, it is better to turn to those who live with it as well.
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It took me 1 month to stop worrying about the side effects warnings, but I finally started my Victoza. My body didn’t have a lot of fun adjusting to the new medication, but I survived the first week with the 0.6 mg dose. There was some nausea, a lot of dizziness, and the feeling that a Mack truck ran me over. At some point it got so annoying I actually asked for half a day off from work while I crossed my fingers so the crappiness would go away. It subsided eventually, but then I was worried about increasing the dose to 1.2 mg. No issues there!
I have been on Victoza for 3 weeks now. I can’t say I feel wonderful, but all the initial side effects are gone, my blood glucose levels are in range, and I feel like I have a controlled, normal appetite; in fact, some days I just make myself eat something healthy even if I’m not hungry, with the sole purpose of taking my metformin pills at dinner time. I take my Victoza before I go to bed; the needle is a joke, I barely feel it. I am so excited about the pen I even got a special sharps container. I’m silly like that, but maybe it’s a good thing that I’m excited about the new medication because that will help me with compliance which has been my main problem.
And this thing is working! I hadn’t waken up with a BG of less than 150 in a long time, I hadn’t seen anything below 200 after I ate either. Now I’m seeing a bunch of 90’s when fasting, and my post-meal levels don’t go over 160. The only fear I had was the pancreatitis and pancreatic cancer risk, but last week I welcomed the news that the FDA eased the concerns for GLP-1 medicines. So far, so good. Let’s hope my next visit to the doctor shows an improved A1C.