The (mis)Adventures of Social Media and Diabetes

According to merriam-webster.com the definition of social media:
forms of electronic communication (as Web sites for social networking and microblogging) through which users create online communities to share information, ideas, personal messages, and other content (as videos)


With social media we are in charge of what we post.  It's all up to us, it's all in our control. What's not in our control is what and how people respond.  Just like in life, where we have no control over how people will react to something we say; social media is the same.
The other aspect is that we all come to the table with different perspectives.  I write and post from my experiences and you read and react based on your experiences.  Most of the time we're on the same page,  but what happens when we're not and someone posts something that's out of line, or completely wrong, or just rude?  If it it was a conversation at the dinner table it might not have gone awry due to tone and inflection, and also a natural path of conversation.  On social media we usually post snippets and we don't provide the whole background as to what got us to that snippet. 

At the dinner table we have the opportunity to explain, and probe and ask questions, before jumping to conclusions. Why don't more of us do that on social media instead of jumping to wrong conclusions? Is it because it's viewed as "just a post on Facebook?"  I'm not sure. 

Everyone manages their social media their own way.  Some people post only about their kids.  Some only post about sports.  Some post everything.  Some post nothing at all.  Over the years I've posted all kinds of things:  snow, cat transports, commuter train issues, fundraising events, gluten free adventures, travel.  I've also used it as a place to vent about an issue; though rarely as a place for advice.  For example "After  seeing the doctor today, I have a new diagnosis of plantar fasciitis"  95% of the posts told me how to cure it.  Even after I commented multiple times that I have a doctor and a plan.  I know, people want to help. I'm the same way, I immediately go into problem solving mode. But not every post needs an answer, or is even asking for advice.   In my head I thought by stating I had already been to the doctor would signal I wasn't asking for advice.  That would have been "Does anyone have any suggestions on how to treat plantar fasciitis?"   

After attending #MasterLab in July I have turned most of my Twitter and Facebook posts about diabetes.  I feel that the more I share about life with it, perhaps the more people will learn and that  there's a lot more to it than insulin and diet coke.  The more engaged I am, the better I feel about having diabetes.  If I could find a job dealing with any aspect of diabetes I'd take it in a heartbeat.   

I posted something seemingly innocuous on Facebook the other day, and got an earful in one response.
My original post:
Going on 5 nights on really bad sleep. Hoping the Sandman helps out tonight. My thoughts are somewhat scattered. Could be why I think doing the JDRF Ride next year is a good idea.
 wink emoticon
(I should know better than to post about not sleeping; as people will want to solve that problem for me.)

Most of the responses were fine,  until this one:
Maybe try to stop thinking about your diabetes so much. I am all for advocacy, awareness and good control but focusing on it 24/7 can not be healthy mentally. Your posts suggest you think about diabetes all the time. It certainly can't be ignored but don't let diabetes dominate your life, as you know and have seen there is a whole big world out there. Don't let the diabetes win by taking up all of your precious time. Focusing every day on a frustrating, scary, unpredictable disease would send me over the edge. Did you ever think about taking a day off....not from testing and the control aspect but from all the rest of it? Everyone needs a break sometime and maybe it will help you sleep better.

I was outraged when I saw this.  I came close to  deleting this post and unfriending this person. At first I was going to respond right away, but I knew better.  Then I wasn't going to respond at all. But I did respond hours later:

I have to admit when I first read this I was a bit angry, for blaming my sleepless nights on dealing TOO much with my diabetes. Then I realized your comments were out of concern, since we've not had the chance to sit down and chat about what I'm doing and why. I'd love to at some point though! .My rough nights don't have anything to do with diabetes - well one night did since I was low several times. The more I do, the more I help people, the more involved I am, the better I sleep. I love that people have been reaching out to me to help with all kinds of things. If I could find a paying job in the realm of diabetes I'd do it in a heart beat. It may only make sense to me, but there's where we are. If you have any questions/concerns feel free to send me a message so we can chat more.

Yes, it's true.  I think about diabetes all the time. For me just doing the insulin and blood sugar testing isn't enough.  I have gone through phases where I did the bare minimum and didn't talk about it or deal with it.  That didn't help me at all.  It impacts everything I do on some level and I want to do everything I can to help find a cure: help  people to realize just how frustrating & scary this disease is.

The rewarding thing, the thing that keeps me going is that people have started to come to me with diabetes related matters.  Some interactions have been simply to say thanks for posting. Some have been questions about how to help someone who needs supplies and doesn't have insurance.  Some have been about Camp Nejeda. Some have been contacts for newly diagnosed,   I love it. Seriously. Keep it coming!

The long of the short is please instead of first jumping to conclusions, ask a few questions.  I'd have loved it if this person instead of lecturing me on changing something they didn't understand instead said "is something troubling you this week?"  The answer to that question would have been "My husband has been traveling this week and I don't sleep well when he's away"  Granted I could have posted that first, but hindsight is 20/20.

My (Diabetes) Camp Story

I was diagnosed with diabetes at the age of 2, many many moons ago.

From the ages of 2 to 11 my dad gave me my injections. Only in the arm. The injection  had to be the arm so I could see what he was doing.  I remember injection time was also the time I would help him pick out the tie to wear to work.  I think my parents tried to make something negative into something positive.  But I digress, this is about camp.

I was 10 years old the first time I went to camp.  It was a day camp and I did not like it. At all.  Ok, I  liked some of it, but the way they handled (or didn't) a camper with diabetes made any of the good parts fade into the background. The staff didn't know much about diabetes and didn't seem to learn or ask questions which ended up with me singled me out a lot. Not because they were trying to make me feel bad, or different, but because they had no clue how to handle the situation.  I only attended one  summer.

I know I asked my parents about trying overnight camp which probably made their blood pressure go up a bit.  But they did their research and learned about Camp Nejeda. 

My first summer at Nejeda was in 1983. I arrived late because my dad was sick so he couldn't take me, and we had to find an alternate way to get to Camp.  If you've ever been to camp you know how important those first few hours are!  So, there I was - first time away from home, first time at Camp Nejeda, and late. I was very fortunate that Frani C. was my  counselor that summer.  She made everything ok.   I felt safe with her, and comfortable as well.  She called my gluten-free food "Phyllis Food" which took the stigma out of it.  I met so many wonderful people.  Another counselor who had a profound influence on me was Ted.  I have no idea how I got on his radar, but any time he saw me he'd shout my name really loud.  Not just a "hey Phyllis" but "Phyyyyyyyyllllllllliiiiiiiissssssssssssss"  Did I mention it was loud?  I was embarrassed the first dozen times he did it but then I started to like it,  and like the attention it brought.  I know now that he was doing it to draw me out of my shy little shell.  That summer I learned to give myself my own insulin injection. I was late to the party with that  but one day a wise nurse told me that she wasn't going to do it and I had to.  You may think that harsh but she somehow knew I could and would and didn't give me the option not to.  (Thanks Jean C!)  

Another magical part about attending diabetes camp is that since everyone else has diabetes too, the non-diabetics felt the odd man out.  

If you didn't feel well or had low or high blood sugar it was dealt with and life went on.  Not only did we do normal camp stuff like boating, archery arts and crafts, but also had diabetes and nutrition classes. 

Another strong memory I have is an overnight canoe trip on the Delaware River. We canoed all day, then camped out in tents. All was fine for dinner, then our bon-fire.  At some point in the middle of the night we woke up to hear Steve C. yelling.  Apparently skunks got into our food, which made Steve upset.  Of course he was, he was responsible for us, and our food, and you know diabetics and their need for food!  I don't quite remember all of the details.

Ah, the stories, the memories...

You should know that the magic of camp doesn't end when you stop going.  The friends and connections are your friends for life.   Thank goodness for social media and email - makes keeping in touch and getting help and support so much easier than sending a letter in the mail (though I do miss those days!)

As you can tell, Camp holds a very special place in my heart, and always will. You can probably imagine how much money it takes to run camp -- to provide enough nurses, and doctors to help ensure a safe, and fun camp experience; food to feed everyone; maintenance and so on.  

In closing, if you have a few extra dollars in your budget and would like to make a donation to Camp Nejeda for their 2016 fundraising campaign, I know many many people, including myself that would appreciate it: http://tinyurl.com/jd6hwtv

Note:  There were so many other people I met along the way that I could write a novel about, but I'll save that for another day.  Just know that even though I've only singled out a few, there were many counselors, nurses, doctors, campers that made a lasting impression.  

A Day in the Life

Unless you have type 1 diabetes,  it's impossible to know what we go through.  Even those that live with us who see a lot of it first hand don't know.  So I'm going to try and help.

6:40am alarm clock goes off.  Reach for blood glucose meter kit.  Take out a strip, place in meter.  Prick my finger.  Apply blood. Wait 5 seconds for results.  105 .  Take synthorid. (has to be taken on an empty stomach, and no food for an hour.  Important scheduling this especially with common morning lows.)

7:30am;  Time to leave the house for the train station:  Check insulin pump status.  Enough insulin?  Check!  Battery level ok? Check!   Extra supplies in work bag including insulin, pump site change, batteries, and glucose tablets? Check!  (other checks include train pass; work badge, keys, lunch, Kindle, mobile phone).

8:00am:  On the train, in the middle seat.  Dry mouth feeling so I check CGM (saying excuse me to those I elbowed by accident) and CGM shows steady line at 110.

8:30am:  In the office.  Check blood sugar level, it's 137 now with CGM showing similar with an up arrow (indicating steady increase in blood sugar level).  I'm having yogurt for breakfast, plus black tea.  I need to take 1.1 units of insulin to cover the carbohydrate in the yogurt and a little bit extra because caffeine in the morning makes me a little bit insulin resistant*.  

8:50am: Ugh. Not feeling the yogurt.  But I have to eat to cover the insulin I took.  Guess it's a protein bar for breakfast kind of day. Not ideal, but it is what it is.

11:00am. CGM blood sugar level up alert.  Yikes,  Up to 231.  The granola bar I ate contained the same amount of carbs as the yogurt. Something to add to my list of things to look into;monitor.  Glucose meter concurs.  I have .03 units of insulin on board from this morning.   Take a corrective bolus of insulin.  With lunch time approaching in an hour I'll most likely have to wait a bit for the correction to take place before eating.  

11:17am:  I keep reminding myself not to check my blood sugar again.  Don't do it. Don't to it.  I need to wait until the insulin I took does it's thing. Man I hate waiting.

11:56am:  Blood sugar down to 185.  Still a bit high but at least it's coming down.  Now to think about lunch...

12:35:  Blood sugar is 135 and CGM showing double down arrows indicating a quick drop.  Grumble.  I got a salad for lunch with some chips. I can't resist chips.  The bolus for lunch is a wild guess, but we'll see how I do.  The next few hours are going to be a bit of a roller coaster I believe.

1:30pm.  To be honest, I'm tired of writing about all that goes into managing diabetes and it's only the early afternoon.

Reflection: There are so many decisions a person with Type 1 diabetes has to make throughout the day and most of it is second nature and takes a split second to do.  Even after having diabetes for so long I know most of the time when I'm not making the best choice but I do it anyway.  For example I ate two cookies last night and bolused for them after I finished eating them.  Did I know that the sugar and carbs from the cookies would hit my system way ahead of my insulin? Yep.  And I did it anyway.  I am human after-all and not every single thing can be planned ahead.    

1:55pm.  End of sensor alert. Gah. I thought I had another day on this one.  Bummer.

3pm:  blood sugar not surprising 214 from too many chips.

Definitions:

bolus: insulin you can deliver “on demand” to match the food you are going to eat or to correct a high blood sugar

insulin on board: is the calculation that tells you how much insulin is still active in your body from previous bolus doses

CGM: continuous glucose monitor

insulin resistance: usually insulin resistance is used when people talk about Type 2 diabetes, where a person can still produce insulin but needs medication to help make the insulin they produce work better.  A Type 1 can have insulin resistance as well -- meaning the insulin taken isn't working as effectively as it should. 

correction bolus: extra insulin taken to lower blood sugar.  This is also known as correction factor which is usually worked out with either the endocrinologist or diabetes educator.  

how long it takes my bolused insulin to work: it takes about 15 minutes for my bolus insulin to start working  It  peaks at one to one and a half hours and is completely gone in about 4 hours.   

Low Blood Sugar & Celiac Conflict = Dining at a Michelin Restaurant in Italy

Earlier this year while traveling in in Italy with a good friend (I'll call her JK for privacy), we started to have a conversation about issues that might come up related to celiac and diabetes at the same time.   You know, just in case.

Before I proceed with the story you should know that no matter where I go I usually carry enough sacks and diabetes supplies to last a few days.  Even if  I'm just going to the grocery store to pick up some eggs and milk.

So back to Italy..

After some internal deliberation the only scenario I could come up with would be if  my blood sugar is low and the only choice is to eat something with gluten or nothing, I'd eat the gluten.  Diabetes trumps celiac in terms of emergency eating.

In hindsight my statement should have been a little more detailed:  what I should have stated was "if my blood sugar is low and I don't have anything to treat it and there's nothing else around then yes, I'd eat something with gluten."

So how does this lead to a Michelin restaurant?  (I had only learned about Michelin restaurants a few weeks before after watching the movie 100 Foot Journey)   While searching online for ideas of where to eat near us, I came across  great sounding creperie for dinner and we set out on our trek to find it.   Note: We were in Perugia Italy, and the area we were staying made the hilly streets of San Francisco look tame.  With the help of GPS we got near, just as my blood sugar crashed. It crashed hard and came on quickly.  Some of this is a bit fuzzy, but I know I sat down and ate a protein bar.  JK wanted to stay with me but I convinced her I was fine (which I was) and she went on the hunt for a place to dine. The first place she went into Antica Trattioria San Lorenzo   said they could absolutely come up with something gluten-free.  I had walked by this place a few days earlier and noticed the Michelein status thinking "no way I'm going in there."  But I wasn't in the place to argue nor was it right after the scare I gave JK and the effort of her finding a place for us to eat.  It would have to do.

This restaurant was very quaint yet different then other small Italian restaurants we had visited.  It was a bit cavernous.  And quiet even though we weren't the only ones there.  We placed our order.  At one point the server brought over this butter knife and plate.  But, the butter never appeared.

First up was a cheese plate which was pretty good.  It was after my plate was cleared that I thought about taking pictures and stage whispered to my friend "is it ok to take pictures in a Michelin restaurant"? To which the server said "yes, it's fine.'  

tuna sashimi

We decided to each order a starter (my mind is drawing a blank as to what the Italian version is) and share an entree.  I picked a tuna sashimi plate which was delish.  JK picked gnocchi, thinking that would be a more traditional choice.  Only it wasn't.  We're not quite sure what it ended up being but it wasn't what either of us were thinking.

not-gnocchi

winner winner chicken dinner

Since JK's son was traveling with us I suggested to her that we take it back and he'd eat it at some point.  But no, we  were told "due to health safety we can't wrap anything up to go."  Uh. ok. No foil swan for you!
JK didn't really like the food, but she was a champ about it.  I promised her gelato and pizza.  But I was really enjoying my picks.  Finally the entree came.  Really good chicken with some vegetables and some sausage in the middle.  My only complaint was there wasn't enough of it.  I kept wondering when they were going to bring the rest of it out.

Finally it was time to decide on dessert. JK really wanted tiramisu but I convinced her it wouldn't be what she was expecting and reminded her about the gelato.

So, when you travel with someone who has 2 autoimmune diseases that are both centered around food you never know where you'll end up but you'll have fun along the way!

Lessons learned:
1.  Call the restaurant to be sure they are still in business before you head out.
2. If you are brought a butter knife, don't expect butter.
2. Yes, you can take pictures.
3.  The food you order may not be what you were expecting
4. No foil swan of leftovers!