Let’s Talk About Complications

Posted by on Dec 30, 2015 in Management & Care | 2 comments

diabetes07A couple of years ago I had the opportunity to participate in a virtual summit with some members of the DOC. When I received the invitation from Scott Johnson to join him and some people involved in Pharma and social media, at first I wasn’t sure I would fit in the group; there was to be a discussion about Diabetic Neuropathy and my reaction was “Well, I don’t have that… What kind of input could I possibly give?” —But I said yes, anyway; the conversation was eye-opening and it left me with a lot of bittersweet feelings.

I was rather grateful to be able to say that I’m free of complications, and then it hit me. Just because I’m complication-free now, it doesn’t mean the future doesn’t hold any challenges. And how well informed am I about these complications? I wouldn’t put myself in the completely ignorant category, but I’m definitely very close to it. What I know is very vague, very superficial, and usually tainted by the sensationalism of the media. Nobody wants to learn about diabetes and what it can do to your body when the first thing you see is a horrendous photo of a sick foot that most probably needs to be amputated. That’s fear-education and I avoid it like the plague. The sad part is that at some point I end up avoiding it ALL.

How many of us can say that, unless we get diagnosed with something, we actively go and look for information on a certain condition, especially a complication from diabetes? I certainly can’t! I go for my eye exam every year and I’m all happy when the doctor tells me my retina is the most beautiful thing he’s ever seen, and I leave it at that. I don’t worry about it for another year because I’m almost convinced that I’m doing all the right things to control my diabetes. After all, no complications means good control. Ummm… No, not really. We all have different bodies and this is what we were talking about last night. Some people can spend years without paying attention to their blood sugars and develop no complications. Some others can pay attention to every single thing they do and still get them.

And that is why we all should be open to:

1) learn about complications
2) talk about complications
3) approach it from an educational point of view
4) discuss it like patients, not like pharma, doctors or the media

How do complications of diabetes make us feel? What would happen if we got one? Are we prepared? Do we know how to recognize symptoms? Let’s put neuropathy as an example. I was one of those people who thought neuropathy = pain. I was wrong. It turns out I could have diabetic neuropathy as of this very moment and be completely unaware of it. Why? Because the symptoms are vague and can be related to many other conditions. Orthostatic hypotension? I have that… and it’s a symptom! Yes, quite shocking. It may not be neuropathy, but at least now I know I should pay more attention to the things my body tells me.

So, the same way we advocate for finding a cure and talk about our rights, we should be working on discussing complications openly to get rid of the stigma created by the media and other misconceptions. Knowledge is power. Shared knowledge is power.

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BG Testing… 1, 2, 3

Posted by on Dec 29, 2015 in Management & Care |

Originally posted on Diabetes Daily.

getty_rf_photo_of_woman_checking_blood_sugarThe first time my endocrinologist told me I was doing so well managing my blood glucose levels, I only needed to test them 2-3 times a week, I laughed… hard… I looked at him with a big “REALLY?” stamped on my forehead. He assured me it was okay, so I thought it was okay.

Guess what? It isn’t okay!

In 2008, I worked for a company that sold diabetes supplies and delivered them in the mail. While I tried to appreciate the experience for what it was, and did my best to keep my compassionate and caring attitude toward the customers, I got burned out pretty quickly. Among the many things that made me unhappy about that job was the absurd insurance companies’ policies when it came to the limit on test strips.

Insurance companies in general oversimplify something that isn’t simple at all. Their perfect equation goes something like this: you use insulin, you test 3 times a day; you don’t use insulin, you test 1 time a day. And good luck with that! Forget the highs and the lows during the day, and just guess what your food can do to your glucose levels before you put it in your mouth. Easy, right? No.

I speak from the perspective of a person with type 2 diabetes who doesn’t use insulin. Most of the time, I’m just praying to the gland gods to behave when I eat. Many times I don’t even pay attention and have the negative thought train about dying any day, anyway, so why bother? And you know why that is? Because I was told it was OK to test only 2-3 times a week… so the rest of the time I’m completely oblivious.

It’s really hard to get into a blood glucose testing routine when you’re advised to do it so randomly. If you choose to stick to that necessary routine and use more test strips, good luck paying for them out of your pocket. I’ve gone without testing for long periods of time, mostly as a personal choice (irresponsible choice, I may add), and let me tell you that not knowing your numbers isn’t a good thing. Especially when you rely on food choices; sometimes even the healthy stuff may play a bad trick.

So, how do you know? By testing your blood sugar more often!

If you’re not testing often because you believe that people with type 2 diabetes shouldn’t test that often, consider talking to your doctor about increasing the amount of test strips in that prescription. Knowledge is power. It’s frustrating not to know where you’re going to land when you jump. And testing often does help you make better choices.

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We All Hate the Word “Compliance”

Posted by on Dec 28, 2015 in Diabetes & Emotions, General, Management & Care |

Compliance
noun  |  com·pli·ance  | 
:  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!

 

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Open Stigma

Posted by on Jul 2, 2015 in General |

Originally posted on Cranky Pancreas:

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.

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Denial isn’t a river in Egypt

Posted by on Oct 22, 2013 in Diabetes & Emotions, Management & Care | 4 comments

speak-no-evil-hear-no-evil-look-no-evil

“A slave that acknowledges its enslavement is halfway to its liberation.” –Mokokoma Mokhonoana

As I sit to relax after eating a healthy lunch (green peppers stuffed with a mix of brown rice, chicken and veggies) I’m thinking why don’t I eat like this more often. In fact, I’m here thinking what happened in the past few months to make me completely derail from everything a person with type 2 diabetes should do in order to be healthy.

2013 has been hectic. For almost a year I was working two jobs so I could afford health insurance (see the irony?). My schedule was so crappy, I ate whatever was available, which means there were a lot of late night shifts that ended at the BK drive-thru. Decent sleep hours became a joke, so don’t ask me about exercise. My routine got completely screwed up, and I won’t get the award for taking my medications on time. Now my jeans feel tighter, you do the math. I feel tired which means my thyroid is angry. So it hasn’t been a good year for my diabetes management.

About a month ago my life changed for the better when I was offered a wonderful position at the college where I work. Now I have a regular week day, first shift, full time job. That certainly gives me time to plan things and take care of myself, but it’s taking me a while to get back on track.

The first thing I did was reassess my health and realize I haven’t seen my doctor since the beginning of May. My last A1C dates from March. I don’t remember when was the last time I tested my blood glucose levels because I ran out of strips, and the doctor will want to see me. But for a month I’ve been afraid to call and make that appointment… I am almost 100% sure my numbers will make her eyes cross.

Because taking my metformin has been rather an irregular thing, now that I’m taking it every day, as many times as required, my stomach is all messed up and I find myself cursing the diabetes demons. And while trying to decide how to soothe my poor stomach, I was thinking if I need a medication change, if it would be better to manage my blood glucose levels with insulin or if there will soon be a magic cure. Truth is, all I need to do is get out of denial and do what has always worked for me.

This is the story of my life. The story of the life of a person with type 2 diabetes. Especially one who doesn’t live on insulin. It’s homework every single day. Every decision affects our numbers. And the guilt paralyzes us.

I made my appointment with the doctor this morning. I know it won’t be pretty, but I ran out of excuses.

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