Category: General

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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

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.

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!

Ciara Wearing Topshop Dress Attendance Ciara Performs Ditch Fridays Ditch — Photo

General

Blue Fridays 2013 – 338

This post was originally published on my blog, RFamHere’s Ramblings.

Every Friday during 2013, as well as World Diabetes Day, I wore at least some blue in recognition of Blue Fridays and posted a picture. Below is a slideshow video I made from those pictures.

Ciara Wearing Topshop Dress Attendance Ciara Performs Ditch Fridays Ditch — PhotoThe song, “Hold Me, Jesus” by Rich Mullins, means a lot to me. When I’m feeling discouraged, this song helps to encourage me. I found it fitting to use that song in the video.

This is my first attempt at making a slideshow video. Considering, I think it turned out alright. Enjoy!

Multi channel pipette pipetting. — Stock Photo

General

Type 2s at Friends for Life? MasterLab! – 393

This probably sounds silly, but for the last few years I’ve been jealous of Type 1s and their families. Why? Friends for Life (#FFL). This conference is sponsored by Children With Diabetes (CWD) and is designed for people with Type 1 diabetes and their families. I felt like a kid not invited to a birthday party.

This year there is an event at FFL with Type 2s on the invite list: Diabetes Hands Foundation’s MasterLab. Want to spend a day talking about advocacy? MasterLab is for you! Recently I was made aware of this day of advocacy discussion and asked to attend as a person with Type 2 diabetes (see disclaimer below). After looking at the schedule, how could I say no?

Kate and I (Sue) are two of the writers from The Type 2 Experience who will be there. I would love to see more Type 2s at this event so I wanted to help put the word out. Here’s a special deal for those attending FFL already:

Diabetes Hands Foundation offers this MasterLab in collaboration with Children with Diabetes (CWD). Registered participants in CWD’s Friends for Life conference are welcome to join the MasterLab as part of their experience at no additional cost. Separate registration for the MasterLab is required.

(Note: There’s more information on the MasterLab page if you want to take advantage of this offer.)

The excitement and anticipation grows as I try to figure out what to pack, find out which of my diabetes online community (DOC) friends will be there, and figure out what bag will fit under the seat in a 16″x14″x12″ space to carry my clothes and laptop.

Are you going to FFL or MasterLab? Let us know! Maybe we can meet up!

Disclaimer: I have been offered a scholarship by the Diabetes Hands Foundation as part of my participation in the Diabetes Advocates program to attend the MasterLab. My travel and hotel are being covered by the scholarship, but the opinions and ideas (as well as excitement and anticipation) I will report on are my own.

General

From Strangers to Friends – #MasterLab – 415

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.

 

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.


(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.

Confiant infirmière qualifié permanent et toucher à l’écran invisible. — Photo

Diabetes & Emotions, General

30 things about Mike’s Invisible Illnesses – 445

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.

Confiant infirmière qualifié permanent et toucher à l’écran invisible. — PhotoLike 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!

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.

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.

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.