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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The Endo Encounter

Posted by on Jul 21, 2015 in Diabetes & Emotions, General, Management & Care, Treatment & Medication |

(Originally posted at My Diabetic Heart.)

So, last week I had my first appointment with an endocrinologist.  For the last six and a half years, my diabetes care has been overseen by my primary care doctor, but due to some struggles I’ve had and changes that I wanted to make, we agreed it was time for a referral to an Endo.  Initially, I was excited about the change, but as the appointment grew nearer, my nerves got the better of me and panic set in.  I was Expecting the Inquisition.

Well, I survived that appointment.  In fact, it went much better than I feared it might.  I do have some reservations about it, but I’ll get to those in a bit.  First, the good parts.

Doc D. is a young guy, maybe 34 years old at most.  I’m 31, so we’re close in age.  He was attentive, listened, and took the time to get to know me and my situation.  He asked a lot of questions and documented my responses as we went along.  I appreciated how thorough he was, and the fact that he took the time to process my information and put his recommendations in writing before he tried to explain his thinking behind them.

He revised my meal time insulin regimen, giving me a coverage plan that is more logical and better suited to my needs.  That should help a lot.  He left my Lantus and Victoza doses alone.   He also prescribed the oral type 2 drug Jardiance for me to try, and suggested that I add a coenzyme Q10 supplement to help strengthen my heart and increase my energy levels.

Doc D. also said he wants to check my pancreas output with a c-peptide test.  He was a bit surprised that I’d never had one.  And since he was ordering tests, I requested that he order GAD65, IA-2, and insulin auto-antibody tests while he was at it.  I practically begged my PCP to run those tests, but they were never done.  Now, they will be.  So, I have that bloodwork to look forward in two months.

He took his time and didn’t rush through the appointment.  That was huge in my mind.

And…. AND…. There was no mention of my weight at all.  Let that sink in for a second… The doctor did NOT focus on my weight at all.  I’m really not use to that.  I was honestly kind of shocked.

His focus was more on nutrition.  Eat better, the benefits will follow.  Hey, I agree with that logic.  I know it works.  But the means of getting there are where some of my reservations begin.

Doc D. is something of a paleo diet evangelist and strongly “encouraged” me to adopt that diet and to severely restrict my carb intake.  He wants me to give up a lot of things that I’m just not sure I’m willing to ditch completely.  I have a real problem with having to deprive myself of the things I love, and I have no desire to go back to starving myself like I did for months after I was diagnosed.  While the results at that point may have been beneficial for a while, it ultimately lead to a major crash and burnout.  I don’t need that again.  I’m willing and wanting to make some changes, but I’m not sure the paleo diet bible is one that I’m willing to thump.  And I’m certainly not going to be beaten over the head with it.

The other major reservation that I have concerns the drug Jardiance that I mentioned above.  I had never heard of it, but through some research I’ve learned that it’s basically Lilly’s version of Invokana.  It’s an oral type 2 drug that is supposed to help my body dump excess sugar when I take a leak.   I’ve heard mixed things about that class of drugs and I’m incredibly leery about starting it.

I have two issues with this.  One, yeast infections are listed as common side effect of this medication.  If you’ve read my story, you know that’s what lead to my diagnosis in December 2008.  It’s understandable that I wouldn’t want to venture down that road again.  Secondly, do I really need another medication on top of what I’m already taking to treat my diabetes?  I’m already taking Victoza, Humalog and Lantus.   I think that’s enough. And I’ll spare you a rant about the additional monthly cost of that medication and the CoQ10 supplement.

So overall, the appointment went well.  I have some strong reservations about some things, but there were some really positive things that came out of it.  I’ve got some clearly defined goals to work on as far as my A1C goes, a better insulin regimen, a new supplement that seems to be helping to boost my energy, and hopefully a doctor who will be the same at the next visit as he was at the first.  He listened, he was thorough, and didn’t leave me feeling judged.  I see him again in September.

Time will tell.

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Don’t be a victim

Posted by on Jul 3, 2015 in Diabetes & Emotions, General, Management & Care | 5 comments

The word “victim” never entered my vocabulary when it came to my life with diabetes. Why would it? Sure, it isn’t great luck that I developed type 2 but, other than genetics, no one “gave” it to me, so how am I a victim? Well, yesterday the light bulb finally went on over my head. You see, yet again, there was an uproar in the diabetes online community revolving around a “joke” that inferred that soda causes diabetes; that sugar causes diabetes. Immediately, the type 1 community was up in arms defending their disease, including a high profile singer who has type 1. I don’t blame them at all! The “joke” was insulting, wrong and does nothing but perpetuate harmful myths about diabetes. The perpetrator of this kerfuffle was quick to point out that they weren’t referring to type 1, only type 2. That just made it worse. Due to the high profile singer, the story was picked up by several news channels and magazines. When the difference between types was discussed, video of overweight Americans were shown to indicate type 2. <sarcasm> You see, apparently, only fat, lazy people develop type 2. They are the ones who are guzzling soda and should stop. </sarcasm>

I can’t tell you how tired I am of trying to stop the hurtful, always inaccurate myths surrounding type 2 diabetes. It’s like canoeing upstream without a paddle. It feels like David against Goliath without a stone. It’s akin to removing a snow drift with a spoon. It’s nearly impossible. I’m not here to bust any myths. I’m not here to correct the inaccuracies. I’m here to tell you that you need to stop being a victim.

The stigma that is attached to type 2 diabetes is doing huge amounts of harm in our community. We are made to feel as if we did this to ourselves (we didn’t). We are told that we just need a little self-control, to stop eating junk, and we’ll be cured (bunk). Those types of mainstream thoughts not only keep people from making donations to diabetes research funds but it makes those of us with this disease feel awful; feel less-than; feel guilty. People who feel that way may be less likely to take proper care of themselves. Why bother? It’s my fault, right?

Stigma is bullying. Cowards who hide behind their computer screens and sling ugly comments to people who are struggling with a disease that they didn’t ask for, are bullies. No better than the mean kids on the playground. They must be stopped. As a mother, I’ve had some experience with bullies picking on my son. I found that when they were confronted, they backed down. Calling them out worked, although there was quite a bit of fear on my son’s part, I’m sure. He learned a valuable lesson though: don’t be a victim.

My plea to you is this: Don’t be a victim. Don’t give the bullies power over you. Do what you can to show the world that, even though you have diabetes, it doesn’t have you. Don’t let the naysayers keep you from doing what you need to do to live a healthy life. We may have a hard time busting those myths but that doesn’t mean we have to stop trying. What we can do, and should, is defend ourselves and not hide. No one should have to apologize because they have a serious condition. Everyone deserves kindness and compassion when they are dealing with diabetes of any type. Speak up and speak loudly about what living with type 2 diabetes is really like. Arm yourself with a few myth-busting truths you can pull out and use when someone tries to bully you or any PWDT2. Don’t be ashamed. Don’t let them win. I don’t know about you but I refuse to be a victim.

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The Flawed One-Size-Fits-All Approach to Type 2 Diabetes

Posted by on Jun 28, 2014 in Management & Care, Treatment & Medication |

The more I observe the general approach being employed by many in the medical and diabetes health communities to address the ‘diabetes epidemic,’ the more I wince.

At the heart of the matter, there seems to be a general undercurrent of belief regarding the condition: diabetes type 2 is a straightforward situation, so just exercise more, and eat less. I get that vibe a lot when I watch TV, read the news, or read the blogs of many a well-meaning health professional and health advocacy organization. While this is generally true in principle and the advice and ideas of many of these folks are helpful, one comes away with the impression that they consider diabetes to be a one-size-fits-all situation, where people are simply undisciplined. This is a nearsighted perspective that is unhelpful for the patient – it fails to truly address the multi-dimensional psychological aspects of a person living with the condition, and thus, their ability to truly embrace the challenge.

What do I mean by this?

What I mean is that diabetes is simply a symptom of a problem. Let’s think about this situation for a moment. Would we tell an anorexic or bulimic patient who has developed heart disease to simply start eating more, or to simply stop throwing up? No. We understand that these behaviors are symptoms of a larger problem – that there are psychological challenges at work, creating disordered eating in this person’s life. We can tell a person with anorexia how undereating will kill them, or a bulimic how throwing up will damage the enamel of their teeth – but no amount of information is going to stop the disordered behavior. There needs to be intense psychological intervention in order to address the warped perceptions in the patient’s life.

This is just one example of how a chain of events can lead to chronic condition in someone’s life. Every ‘someone’ ought to be treated in ways which are tailored to their life experience. Now, while not all persons with diabetes are obese, the fact of the matter is that the majority of persons with type 2 diabetes have some disordered eating, are overweight, or are obese, and the reasons for this need to be addressed.

  • There are some folks who may have gained some weight simply because they are very busy — be it busy parents with families, or busy professionals – and they might just need some help tweaking their habits. These types of folks could benefit from just a bit of guidance on how to readjust, and minimize just reaching for the convenient meal or junk food snack;
  • There are folks who’ve gained weight due to illness, medications, or immobility, and could use some help juggling the situations; and
  • There are some folks who genuinely have disordered eating, and have gained massive amounts of weight: folks who use food as a form of comfort, as a form of treating pain or depression, as a form of coping with life much in the same ways a person might use drugs or alcohol, etc.

Whatever that person’s reason to struggle with disordered eating which has lead to weight gain – it needs to be addressed first. We recognize that disorders like anorexia and bulimia are dangerous, and not just a matter of ‘eating more,’ and stopping the dangerous habits. So why don’t we recognize that a large number of people who are obese also have a deadly eating disorder and are in need of psychological attention? Would we throw an eating plan at folks with anorexia, or bulimia, and expect them to fix themselves? Or would we give them much needed psychotherapy, and coaching, to help them succeed?

We need to understand that type 2 diabetes can affect a large variety of people who are in many different walks of life, and with many different social challenges. Assessing the patient in a wholistic way – addressing the level of psychosocial support and therapy that a patient might need in order to overcome their health challenges will be ESSENTIAL to managing the diabetes epidemic. There is no amount of healthy foods, exercise facilities, and information that can fix a person whose mind is warped by the thoughts and cycles of disordered eating. Therapy is needed, and it must not be ignored.

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