Category: General

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General

Team WILD, Mari, and me. -123

Two years ago, I had fallen on physical and emotional hard times. First my body failed me, unrelated to diabetes; then my marriage fell into the category of “irrevocably broken”. Somehow, I gathered the strength to join Team WILD, and it helped that Mari offered a small discount in return for a little publicity.

I met Mari that summer, as she also invited me to have dinner one evening with those attending Camp WILD that summer in the same city where I work, completely understanding the financial burden that going to camp would have been at that transitional point.

I came away from the 3-month program with a 20-lb weight loss and a significant gain in self-confidence. Over the past couple years, I managed to meet a handful of new people who boosted me up when I needed it the most, to lift me up where I am now. But the first one was Mari, and I am forever grateful.

General

Website Launch – 1

For a while I have wanted to create a place where people with type 2 diabetes come together in a effort to help each other and share their experiences. This desire came after I realized we need to have a stronger presence in the Diabetes Online Community, and also because I have been inspired by other group efforts mostly targeted for the type 1 community. Then I read an article on the Sanofi blog “Discuss Diabetes” where Bob Fenton talks about people with type 2 diabetes being invisible in the DOC. We do not want to be invisible, we are here, we have something to say!

I only know a few type 2 diabetes bloggers, but I admire them and respect them immensely, and I knew I needed them to make this work. So I reached out to my good friends and fellow T2’s to ask them if they would be interested in having some sort of collaborative website. And here we are, still working on it and setting things up, but I wanted to make June 1, 2013 the date of the official launch of The Type 2 Experience, a collaboration blog where want to connect to other people with type 2 diabetes and discuss what life is really like living with this condition in order to demystify some of the information given by the media, because I personally feel it is our duty as diabetes advocates.

I am excited! My most sincere thanks to Mike, Kate, Bob, Lizmari, Sue and Rachel who have agreed to work on this project with me.

General

It’s good to be humbled! – 299

Saturday I participated in the American Diabetes Association’s Step Out: Walk to Stop Diabetes. This is a picture of me with my Red Strider hat and shirt. The sign I am kneeling next to read, “Red Striders rock! You are why we walk!”

While we walked, it hit me. It really hit me…

I am a Red Strider.

These people are walking for ME!

I looked behind me and saw all of the people not wearing Red Strider attire. Those people we not just walking behind me. They were behind me in more ways. Ways that humbled me.

These people raised thousands of dollars to help find a cure for ME.

These people took time out of their Saturday morning for ME.

After I took this picture, I started crying. My youngest two were walking with me. I told them that seeing all of those people walking was a humbling experience.

What does humbling mean, Mom?

It means…. it means…. *pause due to tears I’m trying to hide*

Mom, what does it mean?

“It’s when you realize that other people are more awesome than you are,” is all I could get out.

These people that were behind me are awesome. They didn’t have to be there. They didn’t have to raise money. They did this because they are amazing.

Why do I walk? I walk not just for me, my children’s future, and those with diabetes. I also walk as a thank you to those who reminded me to be humble that day. Those who helped remind me that there are people in this world who are awesomely amazing. People who go above and beyond – just because they want to.

Thank you to those people!

Eating & Cooking, General, Management & Care

It’s a Miracle! – 371

If you’re paying much attention to what is said on social media about type 2 diabetes; how we get it and how we can get rid of it, then you’ve probably seen this:

Wouldn’t it be nice?  Let me say right up front: I hate the term Diabetes Sufferers!!!!

Let’s discuss this claim that okra water will make diabetes “go away”.  There are some rather scary claims here.

First, that okra water “played the role of insulin”.  Anyone who has type 1 knows that there isn’t anything that can replace their injected insulin.  However, many, many people with T2 are apt to grab onto any claim that will help them stop injections.  This is dangerous, in my opinion, because people may stock up on okra and not take their insulin shots based solely on this claim.  T2s who use insulin are doing so for a good reason.  Their blood glucose is on the high end and they need insulin to keep it under control.  While not injecting insulin with T2 doesn’t have the same ramifications as someone with T1, it does mean that folks may be dealing with much higher blood glucose than they should; wreaking havoc with their bodies and possibly developing complications down the road.

Second, the claim that okra water will make diabetes “go away” leaves you with the impression that “all you have to do” is drink this stuff and you can go on eating all the junk you want, without concern.  Diabetes will not go away.  Period.  There are many things we can do to help control our blood glucose but, even if we are seeing normal numbers, that doesn’t mean that diabetes is gone.  It’s still there, lurking, ready to rear its ugly head if we should stray from the path that is working for us.  We need to accept that reality and move on.

I did a little snoping (ie: I went to Snopes.com.  I do know how to spell).  This article at Snopes lays out the controversy quite well.  Lo and behold, Snopes didn’t call BS, but instead said that there is a mix of true and false in the information found in the plug about okra.  It basically says what I did above about the misinformation and added this:

As noted in the 2012 textbook Bioactive Food as Dietary Interventions for Diabetes:

There is anecdotal evidence for the amelioration of diabetes by dietary consumption of okra but what are lacking are controlled clinical trials. There are constituents of okra such as polyphenolic molucules that provide encouragement for such studies in the future. “

The article goes on to say that there is enough evidence to indicate that consuming okra might have a positive effect on blood glucose but more, extensive, studies need to happen before it can be said that it makes a difference.

This all tells me that drinking okra water might help to lower blood glucose, just as cinnamon and vinegar (not together, blergh) might work.  Some people do see an improvement with both of these things, but some don’t.  Each of us is different.  The thing to take away from all the hoopla is that it may be worth it to try okra water to see if it helps you but don’t ever buy into claims that something, anything, will make your diabetes disappear.  Only hard work and attention, by you, can make a difference.  We need to take ownership  of our diabetes.  Okra is a good veggie to eat.  Add it to soups and stews or even drink the water, but don’t put it up on a pedestal and think it’s going to change your life.  It’s just a vegetable, one of many you should be eating.

General

Open Stigma – 460

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.

Eating & Cooking, General

Too much of a good thing – 356

I recently read an article that warns about the “dark side” of kale.  Kale is the latest superstar of the nutritional world and yet this article warns that if you’re consuming too much it can be bad for you.  Hmmm, too much of a good thing…

This caused me to stop and think about diet/health trends and how we are so eager to jump on any bandwagon that tells us we will be healthier/thinner/happier/stronger if we just eat this or that.  I’m always leery of the “just do this” advice we’re all weary of hearing but it doesn’t seem like a bad thing when someone is touting healthy vegetables.  What harm can it do?

The thing is that, even when it’s healthy foods being pushed, we’re still looking for that magic pill; that one thing we can do to make us healthier.  Here’s the deal: there isn’t just “one thing”.  Instead we should be concentrating on a combination of healthy foods.

Drinking kale shakes until we turn green isn’t a good thing.  It’s not going to cure your ills any better than popping cinnamon pills or drinking vinegar.  They all might help you be healthier but they won’t fix you all by themselves.  Kale is awesome, in moderation.  Add some to your salad or bake it into chips, but don’t fall into the trap that more is better.

Be smart and focus on a balance of healthy foods.  Don’t zero in on one idea and only do that one thing.  Eat sensibly.  Eat a variety of whole foods.  Take supplements that you and your healthcare provider agree might help.  There is no one thing that will do the trick, unless that one thing is you making smart choices.  Think about that before you buy into any health claims.

American doctor talking to senior man in surgery — Stock Photo

General

I am for, “Patient Participation in Medical Product Discussions” – 440

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.
American doctor talking to senior man in surgery — Stock Photo
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

General

Raising Awareness – 270

Today I’m feeling a mixture of frustration and determination.  The frustration comes from reading, yet again, comments after an online article that imply that people with type 2 diabetes caused their condition.  Those comments were made by parents of children with type 1, for the most part.  That fact increases my frustration because, not only do we have to battle the general public but, even those folks within our own community don’t understand type 2.  How can we change that?  What can we do?  That’s where my determination kicks in.

My initial response to these comments was sadness and defeat.  While I’m still feeling those emotions to some extent, they didn’t control me for very long.  Now I’m feeling a heightened level of determination.  I am determined to continue to do all I can to crush the myths about type 2 diabetes and raise awareness both inside and outside our community.

Posting here seems a bit like preaching to the choir.  Most of you who are reading this already get it, but there might be a few who don’t.  There are still many people with type 2 diabetes who feel as if they are responsible for their condition.  You’re not!  I’ve said this, ad nauseam: If poor diet, excess weight and lack of exercise cause type 2 diabetes, then why doesn’t the entire population of overweight folks have diabetes? 36% of Americans today are considered to be obese.  8% of Americans have diabetes; all types.   What about those skinny type 2s? The argument just doesn’t hold water.

I’m posting this here, not only to get it off my chest, but to ask you all to continue to do what you can to crush the myths and stop the stigma.  You may hear someone speak a mis-truth.  You may read a comment online that isn’t factual or accurate.  Someone may question the food on your plate, insinuating that you can’t eat something because you have diabetes.  Try to put your emotions aside and respond in an intelligent, thoughtful way that will help that person to understand things a bit better.  I’m just as guilty as the next person of responding emotionally.  “I did NOT cause my diabetes!”  Seriously, what good does that do?  It just makes us look like a bunch of whiny people who are ultra-sensitive.  Maybe we are at times, but we need to show a united front; a front that says that we are just like anyone else.  That we aren’t lazy slobs who deserve what happened to us.  That raises awareness of this very real, very serious disease.  Join me and be a loud voice that refutes the stigma!  Together we can make a difference.

Conseil pour les personnes âgées de diabète. — Photo

General

The Truth about Type 2 Diabetes – 436

(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?

Diabetes & Emotions, General, Management & Care, Treatment & Medication

The Endo Encounter – 476

(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.