HuffPost piece feat. DOC quotes

DOC member and Huffington Post contributer Riva GreenBerg recently asked two questions of some DOC members. The answers she received were featured in her latest piece.

"Tweets of Diabetes Experience"

Riva Greenberg

As Diabetes Month ends, here's the wisdom and insights from several of my fellow online diabetes bloggers and advocates.

While it's easy to see diabetes as a burden and at times feel angry, ashamed or frustrated, if we look at it through the spirit of thanks-giving, it's also possible to see something gained.

And, I find joy in sharing what I've learned with others.

So I asked the two questions below and these responses flew into my inbox. Also know, as diabetes moves out of the spotlight this month, we will all still be here alongside you on this journey -- and you can continue to ride along with anyone below by following their blog and/or Twitter account.

The rest of the piece, complete with all of those DOC quotes is on HuffPost at this link. You may recognize more then a few names. Great thanks to Riva for including me in the article!

Social Media is helping me lose weight

I have never been a thin person. I have at times considered myself fat, overweight, in shape, not too bad and an entire slew of other body and health terms. I put on weight for the first time in my life around age six and didn't return to a healthy weight until about ninth grade. That dance has continued throughout my life. My weight hit an all time high around 1998. That was the first time that I took a drastic measure to reduce my size. The diet worked great and before I knew it I looked the best that I ever had! Then we had Cole and I put half of it back on. I've been up and down ever since. I never get so heavy that I feel unhealthy but somehow I always feel better when I take off a few pounds so I know that the weight effects me poorly.

Intellectually I know that I should be leaner and I wish that I looked better but these things never seems to be enough incentive for me to maintain a constant weight. The truly odd thing about me being overweight is that I am not a food person. I don't have cravings or even get hungry very often. It took me a long time to realize that my issue was two-fold: I don't eat enough food or water (often I joke that my body thinks that we are shipwrecked and is conserving fat) and when I do eat, I put no effort into eating well (though my kids are fed very well). Even after coming to that understanding about myself... I still haven't addressed it. I did however eat two batches of Christmas cookies, one at a time, over an 18 day period last month.

I needed help but I know that I wouldn't have sought it out on my own.

About a week ago one of our friends posted on FaceBook that he needed to lose weight. In minutes the idea of a competition was suggested and a week later forty people were signed up for a weight loss contest. Everyone threw in twenty-five dollars and the 'biggest loser' will take home a cool grand. Nice idea and my wife was doing it so I joined in as well. I wasn't all that enthusiastic until I saw something happen, something that was very familiar to me because of diabetes and the DOC.

Along with the competition came a private FaceBook group. To keep things on the up and up everyone had to post a video of their initial weigh in. No one was too pleased and people spoke of dropping out to avoid making their weight public but a few intrepid souls went first and then the greatest thing happened...

People stopped feeling alone, isolated, embarrassed and the weigh in videos began to appear one after the other. Where had I seen this before? In the diabetes online community of course. It's the power of social media. Which is just a new way of saying that people need people. It's community, friendship, support, or as we love to say in the type I world... the knowledge that others are living with and surviving the same things that you are struggling with. Somehow, some wonderful somehow, once you understand that you aren't alone, everything magically gets easier.

I'm watching people that didn't know each other a week ago share things that I know they are embarrassed by. They are offering encouragement, recipes and a lot of needed contact. All of this is supporting and motivating the group. I wish that everyone could experience such community. Up until last week I thought that I would only ever feel like this when I was around the people in the DOC.

This is just another way that social media is helping me. Please share how social media and online relationships have helped you, your post may be their introduction to a much needed life change.

Follow @ArdensDay

Update on Wednesday, February 1, 2012 at 10:34AM by Scott Benner

My one month weight loss total is... 21 pounds!

What should they tell you at diagnosis?

I was recently asked, "name one thing that you wish someone would have told you the day Arden was diagnosed with diabetes?" I thought about it and almost said that it would have been nice to know how unpredictable things would be.

but after serious consideration... I said,

"I wish someone would have introduced me to Twitter". I found the diabetes online community by mistake. Actually, I didn't know it existed even after I published Arden's Day - I was amazingly and embarrassingly unaware. I never Googled "diabetes", "type I" or the search that I see most now - "my child was just diagnosed with diabetes". I've said this before but there was a small amount of time when I believed that my blog was one of a kind - which of course it is/was not.

I sort of backed into Twitter. I (very honestly) originally joined because I thought that it would help this website find a larger audience. Very soon I realized that it was much more! I began to meet so many great people and communicating with them was very organic. It takes a lot for someone to email you through your website but sending a tweet isn't so daunting. Meeting more people brought new management ideas, more comfort and reinforced the notion that I wasn't alone.

A few weeks after I joined Twitter Arden's BG was unsteady at bedtime so I was sitting up and waiting for it to stabilize. Before I knew what happened it was after 3 am - I was falling to sleep... so in an effort to stay awake I opened Twitter. A quick swipe of my finger showed me that another D-parent was awake and doing the same thing. We chatted for a few minutes and my anxiety melted away. I was still exhausted but I no longer felt isolated.

I think that somewhere between being taught how to give an injection and carb counting class, the hospital should have a social media person drop by and explain why the kids are calling the number sign a hashtag.

My next few posts will center around social media and the great things that it has brought to my life. Look for the first soon after Christmas.

#DOC, #diabetes, #type I, #Twitter

Win a $50 Amazon gift card!

I am giving away one $50 Amazon gift card to a lucky reader!

Not just any gift card, the exact card that I was awarded for winning CBS Philly's 2011 Most Valuable Blogger contest. If it wasn't for all of you Arden's Day wouldn't be a blog. I could write until my little fingers couldn't go anymore but if no one read what I wrote... well, I'd just have the world's most public diary. It's all of you that make my words meaningful, you do that when you read them and I appreciate it more then you can imagine!

There are a few ways to enter:

1. Subscribe to the "Arden's Day RSS" feed (link on the righthand sidebar) 

After you subscribe you will be entered once for each comment that you leave on Arden's Day from now until November 15, 2011 at 12:00pm*

2. Like Arden's Day on FaceBook 

After you 'like' the page you will be entered once for each comment that you leave on our FaceBook page from now until November 15, 2011 at 12:00pm*. - https://www.facebook.com/ArdensDay

3. Follow Arden's Day on Twitter

After you 'follow' you will be entered once for each retweet of an @ArdensDay tweet from now until November 15, 2011 at 12:00pm*

4. Vote for Arden's Day in the Parents.com 'Best Kids Health Blog' contest.

After you vote, Tweet - " I voted for @ArdensDay http://blog-awards.parents.com/blog-awards/mom_blogs/448-arden-s-day". You will be entered once for voting ***Voting for Parents.com contest has closed. 10/18/11***

*Contest is open to all but the gift card can/will only be mailed inside the United States. I reserve the right to eliminate comments for content, spam ect. You must include your email address when you comment to be entered. Enter as often as you want, no limit, with the exception of the fact that you can only vote at the Parents.com contest once. 

If you already like us on FaceBook, follow on Twitter or subscribe to our RSS feed your comments will automatically entered.

The winner will be drawn at random by Arden herself and announced on November 21, 2011, good luck!

Update on Tuesday, October 18, 2011 at 10:19AM by Scott Benner

Voting for Parents.com contest has closed. 10/18/11

How does that feel

This morning I saw a tweet from @StaceyDivone that got me to the keyboard...

I’ve always wondered how high or low BGs make Arden feel in the moment, later, the next day and so on.  The problem is, Arden has been diabetic since she was two and I think that the feelings that I see PWD experiencing must just be ‘normal’ to her.

Any parent could tell you that one of the main goals of parenting is the overall comfort of your child.  I remember when my son was a baby, the first time that he got a cold all I could think was, “does he feel the way I do when I’m sick? - of course he must...” I’d imagine the pressure in my head, the general feeling of being exhausted, light-headed - the only thing that comforted me was the idea that he wouldn’t remember and that of course that the feeling would go away - not be a constant.

It’s not the same for Arden, she is going to experience highs and lows throughout her life. On one hand maybe it’s good that she’ll think of these moments as ‘normal’ but I’m more focused now on understanding how she is feeling when she is low, going low, high, going high. Does it effect the next day, her energy level, what? I don’t know and Arden isn’t able to discern enough to tell me in the detail that I would like. That is, she knows if she doesn’t feel well and she definitely knows and verbalizes how she feels in the moment but I want to know if a rough morning is because of an overnight high or low. Could an uncharacteristic outburst be due to a recent or impending event. Again, I know that her ability to reason and control her temper is effected by a low and that she feels nausea when she’s high but I’d really like to hear in detail from an adult about how diabetes makes a person feel so that I could be even more empathetic to Arden in those moments.

If you have time please leave a comment and share your experiences. This would be great information for many parents of T1 kids to have and understand. Thank you!

Oh and if you aren’t following @StaceyDivone or me @ArdensDay on Twitter... please do!\

**

The following are archived comments from this post. You can post new comments below.

Stacey D.

Of course I'll comment since you were great enough to mention me :)

I have to say that as I'm getting older (and so is my diabetes) my physical feelings related to blood sugar readings vary.  By that I mean that I don't always feel the same from similar situations.  I have lows sometimes that knock me out for hours after.  I have lows that I don't feel at all.  I have lows that make me nauseous but nothing else.  I have lows that give me the "classic" symptoms of shaking, sweating, brain fog.  
As for highs, I seem to feel them a lot earlier than I used to when my BG ran higher.  My most common high symptom is tiredness.  If I'm 230+ I sometimes I feel like it's a huge struggle to keep my eyes open.  But not always thirsty or having to pee a lot.  I can also get nauseous when I'm high.  With the highs though, it depends on how long I'm running high I think that will determine how long I feel crappy.  Like last night I ran close to 300 for about 4-5 hours unfortunately.  I'm still feeling it a little bit now and it's noon!  
I never have energy and am always tired and constantly wonder if it's diabetes related.  Sometimes my twin sister complains about the same thing so I think maybe not.  But who knows.  I also don't remember what it's like to "feel" without having diabetes so I'd be curious to hear what PWD who were diagnosed later in life have to say.  
I think it's wonderful that you want to try and know what she's feeling!  Shows you as a care giver putting your whole heart into it :)

Friday, April 15, 2011 - 12:14 PM

Cara

I'm with Stacey on this one. They vary. Sometimes a 60 will kick my tail and the low feeling will linger for hours. Other times I'll be functional with a 35. Sometimes highs make me hungry, which sucks. And they can make me really tired. Nausea sometimes comes with the highs, but doesn't happen often for me unless I'm REALLY high; like in the upper 300s. Sometimes I feel panicky with a bad low. Usually it's when they hit hard & fast and I'm having all all the classic symptoms of shaking, sweating, trouble consentrating, etc. 
I know my answers don't really give you anything solid to go on, but j just like all the other aspects of diabetes, it can be really random.

Saturday, April 16, 2011 - 08:54 AM

Amy R

I was diagnosed when I was 8, so I don't remember anything different.  I do know what it feels like to have my blood sugar in range most of the time...I don't think I can qualify how I feel as "normal" but more as "that's just how it goes!"  
I can echo what has been said so far--sometimes there is is no rhyme or reason to how I feel.  I can feel just fine, maybe a little thirsty and sleepy, at 400 but have a 320 that kicks my butt.  With a butt-kicking high I'm nauseated, fuzzy mouthed (kind of like I haven't brushed my teeth in days), tired, feel like I'm moving in slow motion.  The worst for me is when I'm high and my heart races.  For some reason I just can't handle that. Over the years, my symptoms of lows & highs have changed.  I've run the gamut on those over 22 years!  

Usually I feel fuzzy and out of sync for a few hours after higher high but with lows I usually bounce back unless it's a day of low after low after low...  The worst for me are the days of low-high-low-high because I just feel worn out from not getting a break (physically & mentally).

Saturday, April 16, 2011 - 09:57 AM

Ali

I've got 2 children with type 1 aged 6 & 8 and they both say that they feel that their tummies are shaky when they are low. My daughter who is 8 also says she can feel panicky when low.  Although they don't very often run high, they can mistake high bgs for low ones.

My husband who also has type 1 for 25 years has all the symptoms as per the other comments and again a low can feel different each time.  He also says at times he can feel quite emotional when low.

Saturday, April 16, 2011 - 10:26 AM

Scott

These comments are fantastic... Just what I was hoping for, please keep them coming. I think I'll combine them into their own post when it's done. Great info for parents within! Thank you all!

Sunday, April 17, 2011 - 12:03 AM

Sherry

I am so glad you posed the question that I've pondered since Jenna was diagnosed three years ago at age two.  This subject is one I've been planning to blog about too in recent days.  I desperately want to know how Jenna feels at any given moment.  Sometimes her behavior can be pretty intense and it begs the question - why? I want to understand. I too would like to thank everyone who has responded and all who will respond.  Your input is so very appreciated by us D-parents who wish like hell we could just make it all better but will settle for better insight.

Sunday, April 17, 2011 - 12:31 AM

Jess

it's always interesting to see how other people feel because it varies from person to person.  I have a really hard time describing how I feel when I'm low.  If I'm not too low, it's just kinda a shaky feeling.  And I definitely get low brain--foggy, can't think, can't react.  If I get below 60, then I get all sweaty and stuff.  It takes me a little while to recover from one of those.

The biggest thing when I'm high is my temper.  I have no patience and am prone to snap at people easily (sorry everyone).  I also get thirsty and sometimes ravenously hungry.  And just an overall blah or gross feeling. 

So, moral of the story, stay away from me when I'm high! ;)

Sunday, April 17, 2011 - 12:32 AM

everydayupsanddowns

I find symptoms vary on a case-by-case basis, they don't necessarily come in any set order (though by the time I'm sweating and my eyes are having trouble seeing straight I know I'm in trouble).

Most of my regular 'low level' ones have already been mentioned. 'Feeling a bit hungry' is particularly annoying  - it's not like that doesn't just happen anyway. And correcting for what you thought was a low-level hypo only to test later and discover that you just actually happened to 'feel a bit hungry' and have sent yourself high is a real kicker. 

Speed of drop seems to have a lot to do with warning onset for me. If I gradually fall from 75 to 65 over 4 or 5 hours it's much harder to spot than if the same drop heppens over 30 minutes.

The only times I've felt a hypo hangover were following overnight/early morning hypos where I'd got nastily low and needed my wife to help out. That hasn't happened for a good while now though, thank goodness.

I'm one of those who rarely if ever feels a high at all. I can test wondering how I'm doing and suddenly discover I'm 270+. The most I ever get for a short term high is a slight feeling of indigestion. If I stay up there for a day or two I'll get blurry vision and increased thirst, but mostly my highs come as a bit of a shock requiring me to work back through the sequence of events to try and work out what I've done wrong/what happened.

As others have said there's also everyone's favourite the symptom-switcheroo where you feel a bit one thing (in my case perhaps a bit of indigestion) only to test and find you are completely at the opposite end of the scale.

Then of course there's the 'predictive-hypo'. Feeling some low level hypo symptoms at 90-something after a meal, and they just carry on hanging around unchanged (with you having to ignore the 'feeling a bit hungry') until you finally test and discover you've dipped below 70. 

Good luck with your quest to understand how this feels. And good luck too with trying to keep the highs and hypos from happening at all (the fewer you have the better you feel 'em). Sometimes I think parents/partners of PWDs have the hardest time of all.

Mike

Sunday, April 17, 2011 - 06:51 AM