Tuesday, December 1, 2015

Sometimes It's the Little Things That Get Us

It occurred to me as I was sending an instant message to my husband (during the work day) about a roller coaster of a blood sugar day; that sometimes it's the little things that we deal with as people with Type 1 diabetes that add up and make us want to scream.  Not that the big things don't get to us to, but it feels like those are easier to explain and possibly easier for the outside world to understand.

The little things, you ask?
Like today:  my blood sugar quickly dropped from 125 to 59.  Just as I was eating  lunch.  My hands shook, I felt dizzy.  In my head I knew that the food I was consuming for my lunch would kick in, yet I still gobbled down some Skittles. And as expected my blood sugar went higher than it should have post meal.  So. Annoying.  More annoying? Is that I bolused correctly for everything.  Then low again a few hours later.

Or like that time my jabber, I mean lancing device fell to the bottom of my purse and I couldn't find it so I manually poked my finger with the lancet.  Then found it as soon as I was done.

Or how about having to eat when you aren't hungry because your blood sugar is low?  Or eating to bring your blood sugar up before working out which you  are doing in hopes of losing weight?  Or eating after the workout because something went awry with the temporary basal you set on your pump before working out?

Or being convinced you were given regular Coke not diet Coke despite the server confirming.  And your blood sugar spiking later because you were right.

Or snagging your insulin pump tubing on the doorknob and the infusion set that you just put in gets pulled out.

Most of us laugh these things off since they are somewhat trivial in the day in the life of a Type 1 diabetes.  But they are annoying. And when more than one happen in the matter of a few hours, it makes you want to scream.

Monday, November 9, 2015

10 things to feel lucky about

I've had Type 1 diabetes for over 40  years, and Celiac for about 38 years. Today I am feeling lucky.  It was a very diabetes weekend with an American Diabetes Association meeting where I connected with people from many areas around New England; and a #betesontap apple picking adventure.   Having a very diabetes weekend makes me thankful/lucky/grateful.

1. I am lucky that in 1974 when I was diagnosed there were some issues with the initial diagnosis but that it was diagnosed with no DKA, or coma.
The back story:  On April 24, 1974 my mom went to a PTA meeting and one of her friends who was a nurse saw me and noticed I didn't look well and insisted we go to the hospital.  The ER lost the urine sample; they thought it was other things they did a blood count, but not blood sugar.  The blood count was high, which they said was an infection so they were going to keep me in the hospital overnight.  I believe they started me on IV insulin but much later than they should have.  My mom says she was very annoyed with them (her words) and what they were doing and had me moved to a Columbia Presbyterian hospital in NYC  to 
well known pediatrician.  

2. I am lucky that at the time of diagnosis my blood glucose was around 500 (thanks mom for that info), and not higher.

3. I'm lucky that I was diagnosed with Celiac at age 6, when no one knew what it was. Lucky in the fact that they found out what was making me so sick.

4.  I am thankful that when I was 12 my parents agreed to send me to overnight camp, Camp Nejeda. Not just any camp, but at camp for kids with T1D.

5. I am lucky that so many years later I am still in touch with people from camp that I was a camper with, that were my campers, and that were my counselors. To this day I still credit  Camp with how I deal with the social aspects of having diabetes.

6. I am grateful that despite my retina looking like Swiss cheese from thousands of laser burns due to diabetes retinopathy (complication) I can still see.

7. I am lucky that I have friends that offer to pick me up when we go out at night since they know my night vision isn't the best from the above mentioned laser.

8. I am lucky to have the love and support of my family.

9. I am grateful that I have access to an insulin pump and continuous glucose monitor.  I feel that both have made diabetes management a lot easier.

10. I am grateful, thankful, and lucky to have been selected as a MiniMed Ambassador. I've learned a lot; connected with other people with diabetes I wouldn't have had the opportunity to have met & have found support I didn't realize I was missing.

Wednesday, October 28, 2015

Twitter & the Diabetes Online Community (#DOC)

I created my Twitter account in 2009 or the purpose of contacting a company for customer service issues.  By June 2015 I had about 150 followers, mostly people I had an email address for that were also on Twitter.  The ole' "you follow me and I'll follow you."  I had no idea how to attract followers, even though I googled-it a few times.  The suggestions were to join a Twitter-chat, which made no sense to me.

I was fortunate to have gone to Camp Nejeda (overnight diabetes camp in New Jersey); and through Facebook been in contact with my fellow campers and counselors.  All seemed right in my #DOC world.  

That all changed in July when I attended #MasterLab, (as a guest of Medtronic Diabetes) where I live Tweeted   From barely posting a Tweet in months, I learned very quickly the ins and outs of Tweeterand slowly but surely I was gaining followers.

The Tweeting didn't stop there though.  I learned about the #doc and Twitter chats #dsma, and #dcde.  I try to participate each week and sad when I can't.  The folks of these chats have become an extended family to me.

Today I have 482 followers, and I log into Twitter a few times a day to see what's going on.  It's become the first place I go to get a pulse on what's happening in the word of diabetes!

Monday, August 24, 2015

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.

Tuesday, August 18, 2015

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: 

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.  

Thursday, August 13, 2015

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.


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.   

Thursday, August 6, 2015

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.

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!

Sunday, July 26, 2015

The Diabetes Waiting Game

Depending on the day,  and what else is going on I often think of all the waiting T1D's deal with and how often it cam be very hard to deal with.

Just a sample of the waiting game:

  • Waiting for A1C results.
  • Waiting for your eyes to dilate at the ophthalmologist; then waiting to see what is going on with your eyes.
  • Waiting for your blood sugar to come down before:  going to sleep; eating; giving more insulin....
  • Waiting for your blood sugar to go up from being low: before going to sleep; driving; exercising; being able to think; eating some more...
  • Waiting to calibrate your continuous glucose monitor.
  • Waiting for the  pre-authorization to be submitted by your doctor for your glucose strips to go through so you can get the kind you want, not the kind your health insurance says they'll cover.
  • Waiting for your insulin pump supplies to arrive in the mail.
  • Waiting to be able to get your next insulin pump.
  • Waiting to get an appointment with your endo when you had to cancel and the next open spot is 4 months away.
  • Waiting to find  out how your private health  insurance is going to be changed and how that will impact what is covered, what isn't and how much more it will cost.
  • Waiting for a cure

What part of the waiting game makes you most anxious?

Tuesday, July 14, 2015

True Confessions Explained

For the last 2 years or so  have been using Facebook to host a page called "True Confessions of a Type 1 Diabetic" and decided to take it to the world of blogging.  The came to me after an appointment I had with my diabetes educator. Leading up to the appointment I had fallen off the wagon. I had become detached from my diabetes and had a good dose of diabetes burnout. I was doing the bare minimum. I debated cancelling the appointment as I was ashamed of having nothing to share. However I kept the appointment and decided instead to use it as a turning point.  I  didn't cancel the appointment. Instead I owned up to my problems and asked them to help me come up with a plan and get me back on track. 

It felt like a  confessional, or what I imagined  a confessional to be like.  I was blatantly honest to my diabetes medical professional. It was empowering. It was just what I needed.  Since that appointment several years ago I have been going strong, and am in my best diabetes health of my life! 

Side note - I rarely call myself a diabetic.  Typically I say I have diabetes.  But "True Confessions of a Person with Type 1 Diabetes" doesn't roll off the tongue very easily!

About Me/Disclosure (updated January 2017)

About me & disclosure:

  • I was diagnosed with Type 1 Diabetes at the age of 2.  
  • I was diagnosed with Celiac the age of 6.
  • I have faced everything imaginable between the 2 and usually try to learn and make the most of it.
  • I was born in NYC, grew up in NJ and have lived in the greater Boston area for more time than I'd like to admit.  I have close ties to NYC/NJ and visit often as I can.
  • I love to travel. Depending on the availability of gluten-free food, there's no place too far that I'd consider going to!  So far internationally I've traveled to Alaska, Japan, Australia, Germany, Israel, Spain, Italy (more than once -- oops!), and various cruise ports in the Caribbean.  Traveling as a person with diabetes and celiac always = good stories!
  • My Twitter name is @phylliskaplan and @Thedinobetic
  • I am a MiniMed Ambassador: As a MiniMed Ambassador, I receive promotional items and educational material to use and share as I see fit. No monetary compensation has taken place and any opinions expressed by me are honest and reflect my actual experience. Opinions are my own.