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Happy and or Healthy

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Victoria recently hosted a guest post by a member of the diabetes community with whom I have butted heads numerous times.

DC Scribe writes about how he understands diabetes but what he doesn’t understand “are other diabetics.” I believe the source of this problem is that he also mentions that in fifty-two years he has never met anyone else with diabetes.

In his guest post, DC Scribe describes (pardon the name pun) the numerous ways in which he keeps his diabetes to himself. His coworkers don’t know about his diabetes and even his family does not know the details of his treatment. Scribe explains that he likes it that way and feels like it gives him the freedom to live the way he wants to live. Scribe does not eat carbs if his blood glucose is over 150 and never eats refined sugar. He emphasizes that his treatment must be working, because he has not had an A1c result “above 6.3 in the last 10 years.”

(Side note: I would like to know how he gets through airports without his coworkers finding out about his diabetes.)

.

I would like to politely suggest an alternative way to live.

As opposed to DC Scribe, I am very open regarding my diabetes. While my coworkers probably do not know or understand the details of my condition, they do understand how important my advocacy efforts are to me. Again, my family probably could not explain how to refill the reservoir in my pump or describe the details of the body’s use of insulin, but they do understand enough to support my endeavors public and private.

I have a sweet tooth. I enjoy baking. I make an amazing often-requested banana cake. I’ve recently entered the world of cake pop creation. I eat various forms of refined sugar and enjoy it – especially the combination of chocolate and peanut butter.

I also see my endocrinologist regularly. I have a personal A1c goal that I have achieved consistently for the past several years. I don’t mention specific numbers online that tend to make people uncomfortable or guilty, but let’s just say I am well within all medical professional recommendations and very comparable to DC Scribe’s results.

My friends from the diabetes community have encouraged me and blessed my life in ways that other people in my life (because of their functioning pancreai) are unable to do. I share online and in person about my life with diabetes because the words of other people have meant so much to me. My only hope in blogging, tweeting, facebooking, and all other forms of communication is that I say even one word that means something to one other person.

If the life DC Scribe lives makes him happy, so be it. I prefer to live a more open life and share the parts of my life that are important to me with my friends and family. I am happy, healthy, and open about my health. I believe that it is possible to achieve all three.

Scribe states,

“I have never been happier and I am certain I am healthier than 99 percent of the people I pass on the street everyday.
It is my earnest hope that other Ds can say the same about their own health.”

This is one place where the two of us can agree.

Same as my age – an invisible illness week meme

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Today is the last day of Invisible Illness Week. Nothing like waiting until the last minute to honor it with a meme.

  1. The illness I live with is: Type 1 diabetes
  2. I was diagnosed with it in the year: 2003 (February)
  3. But I had symptoms since: possibly Spring 2001, but definitely by April 2002
  4. The biggest adjustment I’ve had to make is: putting a little more planning into my activities.
  5. Most people assume: that it is easy because I make this look good
  6. The hardest part about mornings is: knowing that first number is going to determine how I feel for a good part of the day
  7. My favorite medical TV show is: House
  8. A gadget I couldn’t live without is: my insulin pump. I mean, I need some sort of insulin delivery system or I truly could not live.
  9. The hardest part about nights is: not being worried about not waking up in the morning.
  10. Each day I take 1 pill(s) & 0 vitamins. I really don’t want to put anything extra into my body that I am already forced to take. My doctor and I discuss what I absolutely need to take.
  11. Regarding alternative treatments I: believe that they can be a supplement but not a replacement for proven medical treatments
  12.  If I had to choose between an invisible illness or visible I would choose: the devil I know instead of the devil I don’t.
  13. Regarding working and career: I love my job but I worry about gaps in insurance when I move on.
  14. People would be surprised to know: about the emotional impact of my illness.
  15. The hardest thing to accept about my new reality has been: the theoretical changes to any future family planning.
  16. Something I never thought I could do with my illness that I did was: travel around the world.
  17. The commercials about my illness: don’t phase me too much but it does annoy me when I feel like certain d-celebrities have sold out.
  18. Something I really miss doing since I was diagnosed is: have juice (for fun) at breakfast
  19. It was really hard to have to give up: I am not sure. I think my mom has been on a diet my entire life so there wasn’t anything like regular soda that I enjoyed previously.
  20. A new hobby I have taken up since my diagnosis is: blogging and all things social media.
  21. If I could have one day of feeling normal again I would: eat and eat and eat and eat.
  22. My illness has taught me: that some of the greatest things can come from some of the worst situations.
  23. Want to know a secret? One thing people say that gets under my skin is: how well I am controlling my diabetes. I don’t think they know how hard it is to appear to have it all together.
  24. But I love it when people: let me know that they were thinking about me.
  25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 73:26
  26. When someone is diagnosed I’d like to tell them: that you can do this.
  27. Something that has surprised me about living with an illness is: the amount of support that is available if you have the time and ability to look for it.
  28. The nicest thing someone did for me when I wasn’t feeling well was: when a few of my friends brought me a goodie bag in the hospital when I was diagnosed.
  29. I’m involved with Invisible Illness Week because: I have an invisible illness.
  30. The fact that you read this list makes me feel: like you must be really bored. Thirty questions is a lot to get through.

Deep Breath, Start Fresh

What I can do is write and speak

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For the first time, I am participating in the DSMA Blog Carnival. Each month, a topic is selected for us all to write about and take the first few steps towards brainstorming a solution.

Here is the topic this month –

Let’s discuss the lack of diabetes education, supplies and insulin for PWD’s living here and in other countries. What can we do?

This topic is one that is very close to my heart. I have had challenges in my life with diabetes. I have had times of rationing supplies and balancing my budget to make sure I can cover all my medical bills.

There was a time between the end of college and my first full time job that I purchased insulin just across the Mexican border. I know how very privileged I am now that these were my only struggles.

Two years ago, on my first trip to Haiti, I looked around for people living with diabetes. This was the only evidence I could find.

diabetes evidence

I took that picture in the hallway of a “hospital” where patients were recovering from orthopedic injuries from the earthquake.

When I asked one of the workers if she had seen anyone with type 1 diabetes, she couldn’t remember a single case.

Traveling back to Haiti this year, I began to understand more why that may be the case.

finished house with cactus fencebathroom building

If this is your home and your bathroom, tell me how you can watch your carbohydrate intake or keep your insulin at the appropriate temperature? There is no kitchen as we would expect in American homes, cooking is typically done in the front yard.

Food choices may be deciding what meal to eat rather than what to eat for that meal. I can’t imagine being faced with the decision of feeding your family or trying to find medicine for one of your children.

I recently had a conversation with people from Frio and they mentioned that they try to offer their product to people in Haiti and other countries in similar situations and they have trouble finding people to use the Frio packs.

Those in need of insulin are just not living long enough!

I have no idea how to solve this problem that seems so overwhelming. I know that we need to keep talking about it in the diabetes community. No matter what are circumstances and struggles are, if we are privileged enough to have access to a computer to read and/or write blogs, we have a duty to stay involved in this issue and continue the conversation.

This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/august-dsma-blog-carnival/.

Sometimes I can’t

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The past few days have been difficult ones for the diabetes community. Two beautiful young people were taken way too soon.

A few of us were in a Google+ hangout (a video chat) after #dsma on Wednesday talking about how we were feeling about everything. I couldn’t get what we talked about out of my mind on Thursday.

I don’t know if it is a result of being involved in social media or if people with diabetes outside the online community do this too, but I feel like I spend a lot of time proving to people that diabetes is “no big deal.”

I tell them I can eat whatever I want. I do things that people with diabetes “aren’t supposed to do.” My pump is usually tucked into my pocket and my DexCom on my torso so that if you didn’t know I have diabetes, there would be no external sign. When people ask me about my diabetes management I usually downplay the work that is required to pretend that I have control.

When I hear about another life lost, it reminds me and unfortunately shifts my focus and attitude to how difficult and scary it is to live with diabetes. If a 9th grader can pass away from a stroke or an 18 year old can die in her sleep, what prevents that from happening to me or any of the people I know and love.. It’s frightening.

When I have a low near bedtime I wonder what could happen if it drops lower during the night and I don’t hear my alarms. There are definitely mornings were I have woken up, looked at my receiver, and wondered how I didn’t hear the alarms that should/must have been going off for the previous few hours.

Sometimes diabetes is easy. But sometimes it isn’t. Sometimes it fits easily into my life. But sometimes it doesn’t. Sometimes I know I will live a long and healthy life with diabetes. But sometimes I worry. Sometimes I think that I can do this. But sometimes I can’t.

lost too soon

Insulin pump hackers do not care about me!

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And “they” don’t care about YOU either.

In my last post I mentioned that I don’t typically get fired up about every issue related to diabetes. My ice cream supply was threatened, and so I took action.

Well, I would like to revise my previous statement. There are TWO things that I will fight for if they are being threatened – ice cream AND my insulin pump.

In case you have been living under a rock (or you are one of the few people reading who are not in the diabetes community) the past few days, there was story that caught the eye of the press who love nothing more than to scare their readers and listeners. Evidently, some Type 1 techie hacked into his insulin pump and sensor to basically prove it is possible.

Sure, it’s possible – So is me winning a million dollar jackpot (which I would of course spend on a jet for even better diabetes meet-ups). Are either going to happen any time soon? Not anywhere close to likely.

I am not an expert hacker or anything, but I think they usually go for the biggest “bang” for their buck. This “hack” would have to be done on a person by person basis and within a relatively close distance.

Although an attacker would need to be within a couple hundred feet of the patient to pull this off, a stranger wandering a hospital or sitting behind a target on an airplane would be close enough.

I guess we should all keep an eye out for suspicious people wandering the local hospital and be careful if we recline our seat on our next flights.

The diabetes community is not the next target for hackers.

You know what this “story” is going to do instead? I have lost track of the number of products that I have heard about that are stuck in the FDA abyss waiting for approval. This is just another stupid hoop that the medical device manufacturers are going to have to jump through before the products we NEED and DESERVE can come to market in the US.

And that’s all I have to say about this topic.

Here is what other bloggers have to say:

Kerri

Bennet 1, 2, 3

Scott Hanselman

Kelly Booth

And finally, responses from Medtronic and Animas.

laptop

I WILL scream for ice cream

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I am not typically one who fights in every diabetes advocacy battle. I prefer to let the way I live my life to demonstrate my advocacy.

But…

don’t you dare try to threaten my ice cream supply!

When Wendell Fowler wrote his “news” article questioning the logic of a fundraiser for diabetes that involved ice cream and likened it to serving an alcoholic a beer, I don’t think he had any idea of the power of the community that he had angered. He actually deleted the original article, but a copy of it can be found here.

There are some half-hearted, back-pedaling nonsense follow up articles here and here.

But let’s not focus on that, let’s focus on the power of the diabetes community to unite behind a cause.

Let’s focus on the event on Facebook that at the time of writing this post has 2,446 members. Let’s focus on the Twitter hashtag #takethatwendell where you can see even more updates (and pictures) of people enjoying their ice cream with family and friends.

Let’s focus on great friends who I explained the story to, and who were more than happy to join me in this fight!

peanut butter cup perfection!
Yes - I can eat that!

TAKE THAT WENDELL!

About that focus group – a follow up

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Earlier today Jess and I participated in a conference call with Ambre Morley the Associate Director of Product Communications from Novo Nordisk in response to this post. In addition to my post, Jess had sent an e-mail expressing her frustrations to a contact that she has at the company.

Misunderstandings from both sides of the table led to the frustrations and anger expressed on Twitter and in the post.

Hopefully this post can add some clarification by providing both mine and Jess’ feedback from the conversation.

First of all, I offered to and have removed the pictures of the facilitator from the previous post to, as I see it, protect his integrity since he cannot provide his perspective on the situation. I did not alter any of the text of the previous post and stand by everything that I wrote.

Any comments connected to that post have been approved as written and the only moderation of comments that (at this point) I believe in doing on my blog is to remove obvious spam. If you have something to say, I believe other people should be able to read it.

Because of the busy schedule of Friends for Life, most of the people in the room (my entire table) arrived late to the session and may have missed the introduction that explained that the facilitator would be asking questions that may seem obvious. An online community member who was there for the whole session said that she also did not catch the disclaimer.

One suggestion that Ambre was very open to hearing was making sure that people who come in late to their sessions would be briefed on what was happening in the room. Laura Billetdeaux from Children with Diabetes had told us that if we didn’t like a session to get up and leave and try another – I am sure that we are not the only ones who walked into sessions late throughout the week.

The facilitator of the session has worked in the field of diabetes for ten years. As Ambre stated during our call they have to ask question that may sound silly or where the answer sounds obvious to us but she emphasized that “if we don’t ask the questions, we can’t say we know what people with diabetes feel like.” The people working at Novo may think they understand the wants and needs of the people within the diabetes community but without our words they can’t take that information back to the company as research. I can appreciate that.

Another point of contention was addressed by Jess in her e-mail but I did mention it specifically in my earlier post – however it had been tweeted about during the session. That is the issue of privacy. I know that the point of a focus group is providing information to an organization about a product or a topic. However, when applied to something like diabetes that we live with 24/7, I think it enters dangerous territory.

We often live with the “numbers” of our condition being an assessment of our control and our competence in managing the many details of life with diabetes. For example, during the session we were asked to raise our hand to identify our A1c levels. I don’t think that is information that needs to be shared verbally, even in a focus group setting.

I can partially understand the issues that Novo was facing in the focus group. For my job, I often find myself presenting in front of groups and sometimes those groups are not as interactive as I would like. My typical approach to encourage conversation is to pick someone in the group who I know and call on them by name to respond to a question. The difference is that I am not asking people to provide private medical information and the focus group had the potential to do so.

I believe that Ambre understood the feedback from us in being sure to emphasize in future sessions that no one feel pressured to share and that people would be given the opportunity to share the desired information privately if they would prefer.

Ambre, Jess, and I may not have ended the conversation in complete agreement but I believe we have made progress from the initial post and follow up comments. I can appreciate the difficulty for the groups on both “sides” of the issue. Their focus groups are closed and not videotaped or recorded. They can’t disclose what happens in the room, and as participants, bloggers like Jess and I are only able to share what happens from our perspective. As the diabetes community grows, I expect that this will not be the last time that there is a discussion similar to this between a pharmaceutical company and members of the diabetes community.

As this week’s DSMA discussion indicated, the diabetes community – both online and offline – is growing in our voice and our reach. I hope that companies like Novo Nordisk will continue to be in a place to listen and I look forward to attending their focus group next year at Friends for Life.

**********************
Jess’ Feedback

I am glad to have had the opportunity to speak to Ambre on the phone. My feedback needed to be heard. While the conversation may not have resolved everything, I feel like we definitely found some common ground.

I think Ambre left with some solid suggestions to use in future focus groups. I did still leave with the impression that we should not have been upset by the questions at the session. But the bottom line is that Sara and I were upset. I understand that that was not the intention, that Novo does a lot to help people with diabetes, and I am thankful for that. But we were still offended. And that’s ok. We may never all see exactly eye to eye on the situation, but that doesn’t mean we’re not on the same side.

Am I still upset by some of the questions and the way they were asked? Yes. Does that mean I would never attend another Novo focus group? No, it does not. Nor does it mean I think others shouldn’t go. These focus groups do important research, and our voices need to be heard. We should go if given the opportunity.

Is there room for improvement? Yes. But hopefully Ambre and others at Novo can incorporate our suggestions for use in future sessions.

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