Learning from other Health Communities

Learning from Other Health Communities

Deciding to start this blog almost 10 years ago has totally changed my life. It has provided me so many opportunities that I wouldn’t have had if I didn’t start it. One example is the ability to meet and talk with people who live with other chronic conditions.

For so many years, I was only surrounded with others who were living with diabetes. Well, after I started blogging, not before, because that’s one of the primary reasons why I started to write in the first place. So, when I thought about chronic diseases, I really just thought about diabetes and how the diabetes world works.

It wasn’t until I started meeting people with other diseases that I was really  able to open up my mind and start thinking about my own disease in a different manner. It allowed me to be open minded about new disease management techniques and questions to ask my doctors. It also made me realize that as someone with type 1 diabetes, I might actually be at risk for some of these other diseases that I see others writing and talking about.

I would start to learn more about certain diseases and conditions because if I was at risk for them, I want to know to warning signs of them. Sort of like I wish I knew the symptoms of diabetes that I was living with for 2 months before I was sent to the ER.

There is a lot to learn from other communities and I think there are a lot of people in the diabetes community that have reached out to other communities to try and figure those things out. For example, the AIDS community has been able to do so much by speaking up and sticking together. Healthcare in general is such a hot topic right now and people from all disease communities have come together to fight together and that’s just awesome to see.

It’s great to see events like the HealtheVoices conference that is happening this month. People from all different kinds of conditions, diseases, backgrounds, nationalities, etc. are meeting together. These type of platforms are where some of the best ideas and collaborations come from. That’s just my opinion for what it’s worth.

I will not be attending HealtheVoices but I will definitely be following along with the hashtag #HealtheVoices17 from April 21-23.I will not be attending HealtheVoices but I will be following along with the hashtag… Click To Tweet

Have you had experiences with speaking to people from other health communities and if so, what were you able to learn from them that helped in your diabetes management or advocacy efforts?

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How My Wife and I Managed Pregnancy and the First Two Years

One of the most frequently asked questions that I receive is about how my wife and I managed her pregnancy and the first two years of our daughter’s life. Meaning, what kind of research did we do, what kind of precautions did we take, what can you do to help prevent your child from developing diabetes since the father has type 1. Trust me, I did a lot of research. And I asked a lot of people when we found out that she was pregnant.

Unfortunately, my answer is…. we’ve done a lot of research and we did what we feel is best for us, but ultimately, there is nothing you can do.

Here is what we did though in case you need a starting point.

The Environmental Determinants of Diabetes in the Young

The first thing that my endo told me to do is read up on the TEDDY study. And boy did I do that. I read as much from this study and follow up studies as possible. So, I recommend this being a great starting point – https://teddy.epi.usf.edu/

There is a lot of information there, but to sum it up, the TEDDY study believes that children who are diagnosed with type 1 diabetes have some sort of genes that are triggered by something, but what that something is, they are not sure of at this point. If we can find out what the trigger or triggers are, than that can go a long way to try and prevent diabetes. Is it something that is triggered before birth based on mom’s diet or could it be the air we breathe…. I don’t know.

We Chose to Breastfeed

This is a choice that we made very early on. We decided on breastfeeding because we felt it was the most natural thing to do.

WE DO NOT HAVE ANYTHING AGAINST THOSE WHO DO NOT BREASTFEED SO SAVE YOUR COMMENTS!

This was just our own personal decision. My thought process is… we’re humans, why don’t we drink human milk. So, that was an easy decision for us. No matter what, this final decision was going to come down to my wife’s decision because she was the one breastfeeding, not me.

I do believe that there was a press release within the last few months stating that there was no direct correlation between breastfeeding and the diagnosis of type 1 diabetes. My endo, who I ask her advice on everything, gave me the advice that breastfeeding for the first 12 months is the best option, for anybody.

Little to No Cow’s Milk

So my wife was able to breastfeed until our daughter was a year old. She was eating food at that time, but there was still some breastfeeding going on as well. We decided to not give our daughter cow’s milk. The reason was based on research we did and studies that had shown that the casein molecule is too large for the baby’s gut which then became a trigger to start the autoimmune process. Like I said, this decision was made based off of our research and discussions between my wife and I.

We also didn’t completely cut out cow’s milk, we just didn’t allow her to drink it. So, we gave her cheese sticks and yogurt that was made with cow’s milk. So, we didn’t fully cut it out, but as much as we could.

That is pretty much it. We obviously monitor what she eats and don’t fill her up with fast food all the time.

I hope that helps answer any questions that you have. Like I mentioned above, unfortunately, there is not much research out there that provides you a guideline on what to do during pregnancy and after birth.

If you have any other questions, please comment below, it’s a great way for the community to see your questions as well.

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Uncontrolled Diabetes – Honestly I Don’t Care

Last night during the weekly #DCDE Twitter Chat (Tuesdays at 9 p.m.) there was a mention of how HCP’s use the diagnosis code of “Uncontrolled Diabetes” and I tweeted that I don’t really care about that and don’t care what you call it.

I understand that language matters and I totally get it. I, personally, am not really effected that much by the language and wording used in the diabetes world. Myths, yes. But specific words and language, I don’t let it bother me, because at the end of the day, it’s just a word or a phrase. It’s sort of like the old saying from elementary school – “Sticks and Stones may break my bones, but words will never hurt.”

There’s a few reasons why I don’t care about the phrase “Uncontrolled Diabetes”.

First, it’s just a phrase, it’s not that big of a deal. “When I go to get blood work and the receptionist sees ‘uncontrolled diabetes’ they think I’m not working hard to control my diabetes and it undermines all of my hard work.’ Well, guess what? I don’t give a fuck what the receptionist thinks. Nor do I give a fuck about what anybody else thinks when they see “uncontrolled diabetes” I know the work and effort I’m putting in, so I don’t care what others think. I know who I am and that’s all that matters.

Second, what would you rather it say? A Diagnosis code that says “Trying very hard, but still needs some work” or “they really do put in a lot of effort, but they just need a bit more tweaking to keep their BG’s in range for a longer period of time.” I’m just curious as to what the better phrase would be.

Third, and let’s be real here. It’s not controlled. I have no problem being a realist and not trying to fluff myself up. My diabetes isn’t under control. I do what I can to manage it and I can be doing a lot better. More exercise, better eating habits, more weight loss, etc. But when you take a look at some of my CGM graphs and you see roller coaster after roller coaster, guess what, that’s not controlled. So, unless your blood sugars are staying perfectly between the top and bottom line limits that you and your HC team put together, to me, that means it’s not in control.

Here’s an example using a different subject.

If you are driving a car and you are in control of the car, then that means you are staying in your lane and not crossing over the lines into someone else’s lane. If you are driving the car and keep crossing over the lines and are almost hitting other cars because you’re in and out of your own lane, you are an out of control driver…. or an uncontrolled driver. Does that mean you’re a horrible driver? No. Maybe you’re just learning or you’re distracted or maybe it was dark and you didn’t really see the lines that well. All things that you could improve on. But, until you do, you’re still an uncontrolled driver.

I don’t want to undermine anybody’s thoughts and feelings on this topic. If you are outraged by the phrase, then that’s fine, this is just simply my view of it. I am just not a person to be effected by words or phrases that are just used to describe something. I know who I am. I have so much self-awareness of what I am and what I’m not, that it doesn’t matter to me that an outsider sees a diagnosis code and makes a judgement on me.

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Day 1 of Health Activist Writer's Month Challenge

What Drives Me to Write and What I Want Health Activists to Know #HAWMC

Today is November 1, which means it is a lot of things. It is my birthday, it is the start of National Diabetes Awareness Month, it is the start of the November Health Activist Writer’s Month Challenge (#HAWMC) and a beginning to another great month of 2016.

I will be participating in #HAWMC this year, so welcome to anyone who is here for the first time and thank you for taking the time to read.

Today’s prompt for #HAWMC is two part: What drives you to write about your health and what do you want other Health Activists to know about your condition and activism?

What Drives Me To Write

I started this site almost 10 years ago and began writing because it was a good way for me to get things off of my chest about my diabetes. I felt very alone at the time because I didn’t know anyone else who had diabetes and I felt very “woe is me”. So, I started to write. I just started to write about anything and everything that came to my mind about the disease. For the first several months, I wasn’t sure if anyone was even reading what I was writing and I began to feel a little discouraged because now I was just lonely writing on the internet as well.

But then one day somebody commented on a post. It was a long comment, but one part of it stood out to me:

Wow, this is exactly what I was looking for. Thank you, your words have changed my mindset about this disease

That was it. That comment itself fueled me to keep writing, and keep writing more. If I could make a difference in just one person’s life with every post that I wrote, then I felt like I was accomplishing something and making a big difference by making small difference.

This is exactly what still drives me to write to this day. If I have a question about something, I know I’m not the only one. If I have an opinion about something, I know that I’m not the only one. So, I write. I write so that someone does not feel alone like I once did. I know that feeling and it sucked.

My other driving force that keeps me writing is to just provide as much information as I possibly can to let people know that yes, I have diabetes, but I’m living a pretty normal life. I’m a father, a husband, an entrepreneur, a brother, an uncle, a friend, etc. The more I can flood the interwebs with positive information about this disease, the more it can spread and the more people can learn about it.

What Do I Want Other Health Activists to Know About My Condition and Activism

The main thing that I want other health activists to know is that diabetes is not just about eating better, exercising, and living life to avoid getting amputations later in life. I want people to know that it is a very serious chronic disease that we have to live with 24 hours a day, 7 days a week, 365 days a year. We do not get any off days. The best way that I have heard diabetes described as is…a full time job, that is 24/7 and there’s no pay.

With all that being said, I don’t want any health activists to feel bad for anyone living with diabetes. This is not a “woe is me” outcry. This is just a way for me to help explain what living with diabetes is really like. Just like I have no idea what it’s like to live with any other chronic disease, I am excited to ready #HAWMC posts to learn more about other diseases.

That leads me to what I want people to know about my activism. First, let me say that I’m most excited to learn from other health communities to hear about all of your activism ideas and what has worked and see what I can utilize to help further my activism work.

When it comes to activism, what you do is different from everyone else, but all that matters is that you actually do something. Anything. I’ve learned over the years that I am never going to a professional, published author because of my writing style. A lot of people don’t like it, but I really don’t care.

I type out the words that are coming to my brain like I am speaking them out loud. I write how I speak. This was something that I was scared of at first because I felt like no one was going to take my activism seriously because of my writing style. I quickly found out that was not the case.

I have not done a lot of offline activism, but I have been successful with activism via social media. I have found that to be my greatest tool when trying to spread the word about something I am advocating for.

I am hoping to get to know a lot more people from different health communities. Please leave a comment on the site or on Facebook just saying hello so we can connect and learn from each other to make the health activism world a much better place.

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Thank You to Sierra Sandison

As some of you may recall my niece was diagnosed with type 1 diabetes back in October of last year. The diagnosis was a few days before Halloween and also her birthday. She has been handling the diagnosis like a champ since day one. Fast forward a few months, she is wearing a Dexcom and Omnipod and playing soccer. Back in January, I was up in Pennsylvania for a quick little family visit and I had the honor of being her guest speaker at her Daisy’s meeting in order to get her Defeat Diabetes badge.

During her presentation to her Daisies she showed famous people with diabetes. One of those people was Sierra Sandison. She had a few pictures of her. One of her showing her insulin pump, her book and another one wearing her Miss Idaho crown. My sister in law had told me that she loves Sierra and always talks about her.

I wanted to do something for my niece because she has been handling the diagnosis so great, so I reached out to Sierra to just ask if she could do something for my niece.

Well, if you haven’t heard already, Sierra Sandison is pretty freakin awesome!

About a week or so later, I received the following texts from my sister in law.

sierra

I just wanted to take this time to say thank you to Sierra again. Little things like this go a long way in how a young kid handles their diabetes management. My niece is so excited to show people her pump and her CGM. She willingly tells and shows people about it. I am proud of my niece for how she is handling it and once again thank you so much to Sierra. I know for a fact my brother and sister-in-law are even more thankful for this wonderful outreach.

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Peter Sheehan Diabetes Care Foundation

A few weeks ago I received an email (which I receive a lot of them with pitches about diabetes), but this one I found a little bit more interesting, so decided to give it a second read. The email was about a crowdfunding opportunity for the Peter Sheehan Diabetes Care Foundation. The mission of PSDCF is to:

Improve T2D care and prevention for at-risk communities, provide education to prevent the onset of T2D and its complications, and organize forums enabling an exchange of scientific ideas to further the understanding of T2D.

I am all for any one that is trying to spread awareness and education for diabetes.

You can check out their crowdfunding page here – https://www.youcaring.com/peter-sheehan-diabetes-care-foundation-503231

You can also watch their YouTube video below:

 

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The Last Day of Diabetes Awareness Month

It has been a great month. Just like the last 8 months (since my daughter has been born), this month have flew by. There’s been a lot of advocating, a lot of new connections, a few arguments and bickering here and there (which is going to happen), and even a family member being diagnosed.

I learned a lot this month from my peers and from all of the Twitter chats and daily Facebook posts from others. I try to not only spend my time advocating, but also trying to learn new ways of advocating and learn more about this disease.

Now that the month is over, does that mean I’m done advocating? Absolutely not. This month just had a lot of media and press around it, so it was important to take advantage of that additional coverage.

I would call this year’s Diabetes Awareness Month a success.

Don’t stop now. Keep going. Keep advocating. Keep writing. Keep tweeting. Keep posting. Keep doing whatever you did.

What was one thing that you learned this month?

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What I Learned from World Diabetes Day

World Diabetes Day was a very long and tiresome day for me this year. I normally don’t really do anything to celebrate the day, I used to use it as a vacation day from everything I do with diabetes. Last year I participated actively for about 6-7 hours of the World Diabetes Day Chat, but this year, my goal was to break the record, in fact I wanted to actively participate in the entire event.

And I did.

Throughout the 13,14, 15 hours ( I don’t even know how long it was), I attempted to answer every question asked by every moderator. There were a couple of reasons why I did this. First, because I wanted to motivate someone to do something. I was hoping just one person would say to themselves, “if he’s been tweeting all day, I can find 5 minutes to send an email to my local reps.” Secondly, I wanted to show people that we all have time. I know we all live busy lives, but if you audit your day, you can find some time to do more advocacy related things that you feel like you don’t have the time to do. And lastly, I wanted to get a better understanding and feeling for how the DOC felt towards all of the topics that were being discussed.

So, what did I learn during this all day chat? A lot.

I learned that the DOC comes together like a boss. I learned that even when there were disagreements about certain things, there was still a common goal in the end, just maybe the paths were a little different. I learned that there are a lot of people that want to help and do more, but just don’t know they can do. I also learned that when we come together as a community like we did on Saturday, our voices are heard a hell of a lot louder than when we are just individuals shouting.

I learned how I can advocate better and how I can do things differently to better manage my own diabetes. I also learned that it’s very easy for your words to be taken out of context in just one tweet (well, I guess I already knew that).

What did you learn from the World Diabetes Day Chat? Comment below.

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Do You When it Comes to Advocacy

It is Diabetes Awareness month this month, so you will be seeing an overflow of diabetes information. You will also see bickering amongst people with diabetes because not  everyone believes in the same advocacy efforts. And you know what? That is fine.

When it comes to awareness and advocacy, do you.

If you have a certain passion about something and that’s what you want to advocate about, great, do it. Don’t just jump on the advocacy bandwagon because you are afraid people will look at you weird because you’re not jumping on board with them.

If you choose not to do anything in the month of November, that is perfectly awesome too. However, don’t try and bash people that are.

We need to support each other’s efforts in advocacy. You may not necessarily agree with someone, but who is to say who is right in regards to that particular topic. If you choose not to help them with their advocacy efforts, that is perfectly fine, just please stop bashing each other’s efforts.

Support.

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