Don’t be a victim

Posted by on Jul 3, 2015 in Diabetes & Emotions, General, Management & Care | 4 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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Open Stigma

Posted by on Jul 2, 2015 in General | 0 comments

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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30 things about Mike’s Invisible Illnesses

Posted by on Dec 2, 2014 in Diabetes & Emotions, General | 2 comments

A couple of years ago, during Invisible Illness Week, I took part in a writing challenge that asked participants to share  30 things about the invisible illness with which they live.  My original response was posted over on my blog, My Diabetic Heart, and it was recently featured by the good folks over at Diabetes Daily.

Like I said, it’s been a couple of years and there have been some changes in my routine and way of thinking.  So, it’s time for an update.  Here we go!

  1. The illnesses I live with are: Type 2 Diabetes & Congestive Heart Failure
  2. I was diagnosed with them in the year: 2008
  3. But I had symptoms since:   Longer than I really care to admit.  Looking back, I probably had the symptoms of type 2 diabetes for at least a few years before I developed the yeast infection that led me to the doctor.  I’d been experiencing some chest pain, shortness of breath, fatigue, etc… related to the congestive heart failure for a while too.  As with so many people, I didn’t have insurance and couldn’t afford a doctor visit.
  4. The biggest adjustment I’ve had to make is: Has been in my attitude and outlook on life.  And I’m thankful that it has changed for the better.
  5. Most people assume: That because I’m a big guy I must have given myself Type 2 Diabetes and Congestive Heart Failure.  And you know the saying about the word “assume”.
  6. The hardest part about mornings are: Is that my mornings are really afternoons.  I work nights. And working nights with diabetes and congestive heart failure is a challenge.  You might even say it’s not for the faint of heart. Pun intended.
  7. My favorite medical TV show is: I don’t really have one.
  8. A gadget I couldn’t live without is: My meter.  My cell phone is a close second. I use it to keep track of all of my doctor appointments, med refills, etc…
  9. The hardest part about nights are: Well, I work nights as a professional code monkey for a newspaper. So, I’ve got thoughts about diabetes, heart failure, etc… racing around while I’m working through complex algorithms needed to make things work properly and what I end up with is a potential disaster topped off with a migraine headache.   By the way, chronic migraines are another invisible illness I deal with.
  10. Every day I take 10 different oral medications, some multiple times a day, take one injection of Victoza and one injection of Lantus, multiple injections of Humalog, use an asthma inhaler, and a nasal spray. And the cost of all of those medications and related supplies, even with insurance, is astronomical.
  11. Regarding alternative treatments I: If by alternative treatments you mean cinnamon, miracle diets, and snake oils, I’m not a subscriber to the philosophy.
  12. If I had to choose between an invisible illness or visible I would choose: I’m torn on this.  Some days, I’m glad that my conditions are invisible because it’s easy to conceal them on the days when I just don’t feel like talking about it.  On the flip side though, there are many days when I wish people could see the hell that’s going on in my body.   So people could understand that life with type 2 diabetes isn’t easy and that congestive heart failure is scary as hell.
  13. Regarding working and career:  Honestly, I work for the insurance, and for the money to pay the co-pays forced on me by the insurance company.  And I’ve been doing this work thing in the same place for 8 years now. I guess you can call that a career.
  14. People would be surprised to know:  That prior to my diagnoses, I really didn’t care about Twitter. I had no use for it, and thought it was just another trendy thing that would fizzle. And after using Twitter and other social media and being constantly plugged in for nearly 6 years, I found myself feeling tired of it all and decided to take a step back to focus on my needs.
  15. The hardest thing to accept about my new reality has been: The overwhelming financial burden that has come with it.
  16. Something I never thought I could do with my illness that I did was: when I was diagnosed with Congestive Heart Failure, I gave up all hope of ever being able to fly on an airplane.  Everything I read and heard indicated that I shouldn’t it.  I’m so thankful that I’ve had that opportunity, and that all of my flights since were taken to meet with my DOC friends.
  17. The commercials about my illness: Annoy the hell out of me.
  18. Something I really miss doing since I was diagnosed is:  If anything, I miss not constantly thinking about my health.  It gets old.
  19. It was really hard to have to give up:  You know, I don’t believe that I’ve given up much at all.  Well, not unless you count giving up my sanity, and I didn’t have much of that to lose to begin with.
  20. A new hobby I have taken up since my diagnosis is: Traveling to meet strangers I meet on the internet.  And I do so at the drop of a hat.
  21. If I could have one day of feeling normal again I would: Normal scares me.  Besides, I can’t change what’s happened in the past. I can only make the best of the days I have yet to live.
  22. My illness has taught me: That life is precious and short. That it is OK to stop and think about what is best for ME.  I just need to remember that and actually do it.
  23. Want to know a secret? One thing people say that gets under my skin is:  “You don’t look sick.”
  24. But I love it when people: Actually take an interest in how I’m doing, and show that they genuinely care.
  25. My favorite motto, scripture, quote that gets me through tough times is: “A little heart can do big things.”  I’m living proof.
  26. When someone is diagnosed I’d like to tell them: That there is great life after diagnosis.  They are loved.  And they are not alone.
  27. Something that has surprised me about living with an illness is: that so many good things have come to my life because of something bad.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Give me a hug and tell me that she loves me as she has for 12 years.
  29. I’m involved with Diabetes and Heart Disease advocacy because: People need to know what life is like for those of living with type 2 diabetes and congestive heart failure.  People need to be aware of the connections between diabetes and heart disease. And if it’s going to be, then it’s up to me!

I believe that every diagnosis story is important. And sharing those experiences can help others who may find themselves going through the same things. There is comfort in know that you are not alone in your fight. There are others who “get it”.

      30.  The fact that you read this list makes me feel: That you care.  Thank YOU!

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I am for, “Patient Participation in Medical Product Discussions”

Posted by on Dec 1, 2014 in General | 1 comment

This is a guest post by Bennet Dunlap who blogs at http://www.ydmv.net/. The content below was originally published on his blog. I apologize for the formatting, which is my doing.

FDA has a very short term docket (30 days closes on Dec 4) about Patient Participation in Medical Product Discussions. Right smack in the middle of Diabetes month Thanksgiving. Not ideal comment time.
So DOC, we need your help.
Stephen Shaul started the ball rolling to get some comments in. The goal of comments is to be complimentary of the 2014 actions FDA has taken with the diabetes community and ask to keep that going, and maybe step that up with a PDUFA meeting. http://www.ydmv.net/search?q=pdufa.
If you can cut paste a comment great, if you can riff on the talking points making you comments similar but unique, even better. Everything you need is here: http://www.stripsafely.com/comment-on-patient-participation-with-fda/.
Personally I would like to see most o the comments in the docket be on diabetes issues. Let’s dominate the docket.
Time is short.
Thanks for stepping up.
Bennet
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The Truth about Type 2 Diabetes

Posted by on Oct 21, 2014 in General | 2 comments

(Originally posted on my personal blog.)

  • You did not “do this to yourself”.
  • Yes, your lifestyle before your diagnosis most likely helped you toward developing type 2 diabetes. (There are ways to develop type 2 that have nothing to do with weight etc., but they are the minority.)
  • Go back and read the first listed item.
  • You can’t develop type 2 diabetes (or any type) by eating sugar.
  • There is a genetic component to type 2. If you don’t have that genetic component, you will likely not develop type 2, regardless of your weight, level of activity or love of Snickers.
  • You can thank your ancestors for your diagnosis. (Thanks Grandma!)
  • You should dramatically lower your consumption of processed and junk foods once you’re diagnosed. (You don’t have to do that cold turkey, but the sooner the better for you in the long run.)
  • You should dramatically lower your consumption of processed and junk foods whether you have diabetes or not.
  • Some people can eat bread/potatoes/pasta when they have type 2 diabetes. Some cannot.
  • Some oral diabetes medications cause some nasty side effects. If you’re about to start taking a medication, don’t ask others if you will have side effects. We don’t know. The best way to find out is to try the medication and see how you react.
  • There are no magic pills, miraculous diet or voodoo that will make your diabetes go away. You need to learn to live with it.
  • Everyone is different, and so is their diabetes.
  • Regular exercise makes a big difference in your ability to manage your diabetes.
  • Weight loss should not be your goal; a healthier lifestyle should be the goal. Eat better and exercise more often and the weight will most likely decline.
  • Losing weight when you have type 2 diabetes isn’t easy. Don’t focus on the scale, unless it’s weighing your food.
  • Don’t ask others what the best fruits are for people with diabetes. The best fruit for you to eat is the one that doesn’t cause your blood glucose to raise too high. Only you can determine that.
  • Go back and read the first item in this list.
  • Your goal should never be to “get off the pills”. Never. Your goal should be to change your lifestyle so that you can do your best to manage your diabetes. Better health, despite diabetes, should be your goal and medications can help you achieve that goal.
  • You cannot get rid of diabetes. Learn how to live a good life with it.
  • If you take insulin, don’t fall into the trap of think you can still eat that junk food. You can, but it’s not your best choice.
  • Diabetes, any type, can cause you to fret, focus on the wrong things, whine, complain and generally feel like you’ve been given a raw deal. You have, but life with diabetes can be just as good as it was before, maybe better.
  • It’s ok to fret, focus on the wrong things, whine, complain and generally feel like you’ve been given a raw deal. Just don’t live there.
  • If diabetes causes you to be depressed, seek professional help. According to this paper on the International Diabetes Federation webpage (http://www.idf.org/webdata/docs/PIIS0168822710000471.pdf), in their study,“… about 45% of all diabetes patients had undiagnosed depression.”
  • Connecting with other people with diabetes helps, whether it is in person or online.
  • Food is not your enemy. Don’t give it so much power over you.
  • There are lots of yummy things to eat that won’t cause you grief with your blood sugar.
  • There is a huge stigma attached to diabetes. People can be mean and hurtful. Either ignore them or try to educate them, but don’t let them undermine your hard work.
  • Go back and read the first item.
  • Yes, you can have that dessert.
  • Don’t whine if your blood sugar rises too high after eating said dessert. It’s your choice, so deal with the consequences.
  • Don’t feel guilty…about your diagnosis or the food you eat or your lack of exercise. You know what you should do but that doesn’t mean you’ll do it all the time. Give yourself a break!
  • Don’t ask others how many carbs you should eat. We don’t know. Work with your dietician (if you’ve been lucky enough to see one) and experiment with your meter.
  • If your dietician or health care provider has you doing/eating something that doesn’t seem to work for you, speak up!
  • “As physicians, we counsel, we coach, we prescribe, we cheerlead. But the only person who treats diabetes is the person who has it.” Physician Daniel Lorber
  • People with diabetes are just like people without diabetes. Some are heavy. Some are thin. Some exercise a lot. Some don’t. Some love sweets. Some hate chocolate (!!). Some are liberal. Some are conservative. All of them are just people who should exercise and have to pay closer attention to food, but shouldn’t everyone?
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From Strangers to Friends – #MasterLab

Posted by on Jul 11, 2014 in General |

(This blog pot was originally published on my blog, Diabetes Ramblings, on Sunday, July 6, 2o14.)

On Tuesday (July 1), I flew to Florida to attend MasterLab which was on Wednesday. This day of advocacy by Diabetes Hands Foundation occurred at the Friends for Life convention in Orlando, FL. Let me start by saying that I was beyond excited to be offered a scholarship to attend (see disclaimer below). I would not have been able to attend without it. After the initial excitement, I started the planning stage. I have to admit that I started to freak out a bit. The last time I flew was June 2001. Yes, before 9/11 and all the strict TSA security rules. I started reading up on these rules. The night before I left I dealt with a bad thunderstorm and insomnia. My stomach was a mess that morning.

MasterLab

All went well with my first ever taxi ride and as I went through security. I admit that I closed my eyes and prayed as we took off. Overall the flight wasn’t bad though we had a little turbulence here and there. I started to concentrate on MasterLab and my DOC friends who would be there. We landed in Orlando and I made my way to the shuttle that would take me to the hotel.

As I approached the van, there was someone waving in the window with a big smile. The van door opened, and I heard, “SUE!” How exciting it was to see Kim (the one waving), Rachel, and Kerri. What was even more exciting, more than recognizing them right away, was that they recognized me. ME? Kerri and Kim are big names in the DOC. But me? I almost started crying!

The rest of the evening was spent connecting with online friends as if we were long-time face-to-face friends and getting to know so many other wonderful people. It didn’t matter if we were Type 1, Type 2, or Type 3. We were all friends with a common mission – to advocate and educate until a cure can be found.

SueKate
(Sue & Kate from The Type 2 Experience at MasterLab)

During MasterLab, I got to meet so many wonderful people. I was excited to have at my table people like Kate, Aliza, and Karen. As I sat next to the wonderful Cherise, I asked if I could get a picture with her. She enthusiastically said yes. Both of us used our phones to get selfies to post online. The picture she posted on Twitter of us included the caption, “from strangers to friends.”

From strangers to friends. I miss you, my friends. Until we meet again…

———
Disclaimer: I was offered a scholarship by the Diabetes Hands Foundation as part of my participation in the Diabetes Advocates program to attend the MasterLab. My conference fee, travel, and hotel were covered by the scholarship, but the opinions and ideas I will report on are my own.

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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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