Wherever You Go, There You Are

Hi my name is Tina and I have been a Dmom for over 7 years. My last cry was Saturday.

Diabetes meet-ups are wonderful. While I have never been part of a 12 step program I have seen meetings in movies. I imagine those who attend such meetings feel a similar longing for understanding and acceptance and hopefully find a sense of calm in attending a meeting.

Monday evening I (along with some other fabulous parents of children with diabetes) arranged a meet-up for kids attending a diabetes camp this July. The turn out was good, about a dozen families came with their cwd and siblings. The kids played in the arcade as parents visited. It was great when the director of the camp and a counselor came to say hi and answer questions – totally unexpected as this was an unofficial meet-up and not camp sponsored. Having camp staff available to answer questions for first time parents was a real treat. The kids met other kids attending camp and that will hopefully make camp a little less intimidating day one.

A couple of hours after the meet-up I met up with two friends. One of whom also attended the camp meet-up. She isn’t as accustomed to diabetes meet-ups so when she said it kind of felt like going into a support group I could completely empathize. I remember all too well those first few diabetes meet-ups I attended and in truth they do often begin with what sounds like a support group introduction.

Name, age of cwd, and how long in the diabetes club.

It’s common for the nuts and bolts of diabetes to be discussed – what kind of insulin pump, CGMs, 504 accommodations, even the dreaded A1C (hopefully with no judgments from anyone at the meeting). Then if given the opportunity the conversations dip into the emotional side of diabetes; fears, perceived failures, difficult family and friends, hormonal teens, and the roller coaster crazy that is life with diabetes.

This last meet-up was short – two hours total. I don’t know that any of those in attendance got to the emotional side. It wasn’t really the right venue for the emotional stuff, it was loud and chaotic but hopefully also a little informative and really was for the kids more than the parents and I’m fairly certain connections were made. I know Sugarboy met another 5th grade boy who was painfully shy with adults but living it up with my boy and another 5th grade girl. They have hopes of being in the same cabin at camp.

Many families with diabetes never attend a diabetes camp, don’t attend conferences and don’t participate in organized activities. They get their diagnosis and continue on with life with diabetes riding in the side car. There is nothing wrong with this lifestyle. I have many adult friends with diabetes where this was the norm when they were diagnosed 20, 30, 40 years ago. I have these friends because at some point they found their way to the diabetes online community. They found other PWD online. They connected, and some, for the first time after 20 or more years with diabetes realized they really were not alone; there are others around that fight highs and lows, ignorance and even discrimination. As well as others that worry about complications or deal with complications. There is something so powerful in finding out you’re not alone. It is empowering. At the same time knowing you’re not alone doesn’t mean you have to be as involved in the diabetes world as others.

As a parent of three children with diabetes my hope for my kids is they find a place they are most comfortable. Maybe that place will be up front and center in the diabetes world. Maybe that place will be two different worlds – one with friends and co-workers with fully functional pancreases and another with other PWD. Or maybe that place will be one where diabetes rides in a side car and isn’t given any more attention than necessary to stay alive and thrive. Every PWD and CWD is different and just as insulin doses vary so does the desire for other people with diabetes in their lives.

My hope for all my diabetes family, which includes all people and kids with diabetes regardless of type of diabetes is that they find a sense of calm and belonging in their lives with as much or as little diabetes as they are comfortable with.

If you are not currently connected to a diabetes community but would like to connect in others IRL (in real life) or online I recommend the following:

  • Contact your local JDRF office and ask if they are aware of any meet-ups or groups in the area
  • Ask your child’s endo about local groups
  • On Twitter search the hastags: #diabetes #DOC #DSMA
  • Check out the Children With Diabetes forums – there are many different forums basically anything you can think of regarding all things diabetes has a forum
  • Check out TuDiabetes – by the Diabetes Hands Foundation – again regardless of type there is something for everyone
  • Consider attending conferences in your area or beyond. There are too many for me to list so I suggest doing a search for ‘diabetes conferences in (your area – list closest major cities)’  My favorite conference is in Orlando each July. It is the Children with Diabetes Friends for Life conference – although don’t let the name fool you – they have an adult with diabetes track as well

(Just a side note – while most everyone in the online community is there to support and be supported there are a few that trickle in that either don’t actually have diabetes or any connection to it that simply like to troll. Thus when entering the online community be weary and take the advice you give your kids when online – don’t share too much personal information like address, full names of family members, etc.)

‘Wherever you go, there you are.’ Is a quote and book by Jon Kabat-Zinn. Jon is a professor of medicine and teaches mindfulness, meditation and stress reduction.

Shenanigans at TCOYD

Registration for  TCOYD (Take Control of Your Diabetes) $25

Gas to get me and a local D-mom friend to/from the conference $14

DOC – meet-ups at the conference – PRICELESS

After writing this post I realized it is really long – I hope you read it and check out some of the links but here are the highlights:

  • went to a conference
  • learned some stuff
  • met up with DOCers
  • laughed often
  • advocated for a poster
  • was punked – twice

Saturday I attended the TCOYD conference in Santa Clara, CA. It isn’t an extremely long drive but I was thankful to have company, a local D-mom that is also a transplant from my old stomping grounds in TX. She hadn’t jumped into the Diabetes Online world before Saturday but I’m fairly certain she will have a twitter handle by the end this week – how could she not after having met some great DOCers at the conference.

We arrived early to the conference and enjoyed a few laps around the vendor booths in the Health fair. I was able to snag a pancreas that I thought my daughter would want it since hers is broken but when I arrived home she was unimpressed with its texture and also that it was used since I had squeezed it a few times.

pancreasphoto

Other vendors included JDRF (always a pleasure), TrialNet (they wouldn’t take my blood – said I was no longer eligible since I was negative in 07 for antibodies), OneTouch /LifeScan (couldn’t give out meters – really I thought we always were able to snag a spare at conferences), Pump manufactures (Animas, Insulet, Medtronic, Tandem), GlucoLift (the samples were gone and supplies were sold out before we got to the booth later in the day but I approve of GlucoLift glucose tabs – they are yummy – my kids approve as well), and various other exhibitors.

There was this one guy at a booth (more of a table in front of a curtain – no information, no posters, no handouts – just a guy with business cards promoting a free iPhone application. The brief demonstration he shared using his own phone looked interesting. The application does graph blood glucose results (providing the user logs them manually). The thing was I asked the guy (didn’t get his name – no name tag) if the application tracked Insulin On Board/Active Insulin. At first he acted as though he didn’t know what IOB was. Then he said he didn’t believe knowing IOB was relevant. Of course I disagreed to which he wanted to know how I felt it was relevant. I shared how knowing how much insulin was active can help PWD make informed decisions regarding exercise, sleep, meals, and how to treat highs/lows. He didn’t seem convinced but it led to a question regarding how Insulin is used during exercise – is it used more effectively or faster or both? I asked Scott Johnson that question a bit later in the day and he said “both”. Anyway – I m not sharing the name of the application because I haven’t tried it, and wasn’t remotely impressed with the guy promoting the application. Yet if you would like to know what application it was you can shoot me a message and I will share it with you.

I would love to share some of my notes from Dr. Steven Edelman and Dr. Bruce Buckingham and but honestly I lost my notes. I do know my notes included the following:

  • Well controlled diabetes is the cause of absolutely nothing. (ok that was also the title of his talk so that was easy to remember) Steven
  • It’s never too late to take control of your diabetes Steven
  • Steven said during is initial medical training only about 2% of his education involved diabetes but over 30% of the patients seen for none-diabetes illness had diabetes. Steven
  • 2013 – 24 million people have diabetes but 80 million are pre-diabetic Steven
  • You can not eat yourself into Type 2 diabetes Steven
  • Don’t Do Diabetes Alone. Bruce
  • Beware of Anxiety (Bruce had this really cool photo but I was too slow with my phone to snap of picture of his picture so I drew one similar) bewarephoto
  • Bruce said something about “Mindless Eating” and I’m upset I can’t find that my note page on that because I feel like it was important. I’m gonna email him to ask him what it was he said and I’ll let you know.

The real fun began with the Type 1 Track break-out sessions that were followed with DOC shenanigans.

TCOYD has traditionally focused on Type 2 diabetes but recently has added at Type 1 track. This conference included a number of great Type 1 break-out sessions including:

  • Diabetes Made Me Stronger – Becoming a Type 1 Athlete. 
  • Family Planning and Pregnancy
  • Aggravation#1 – Despite My Best Efforts, I Still Get Wacky Results
  • Celiac Disease
  • Meet Your Diabetes Online Community
  • For Parents of Children Living with Type 1
  • Help for the Spouse (I don’t have diabetes but the person I love does)
  • Thyroid and Other Autoimmune Diseases

I attended the Online Community session (how could I not when the panel included Kerri Sparling of SixUntilMe, Mike Lawson of Diabetes Hands Foundation, Kelly Close of DiaTribe and Amy Tenderich of DiabetesMine) and the Parents of CWD session.

During the “Meet Your Online Community” session Kerri, Mike, Amy and Kelly answered questions about how to get involved online and what it means to have the support of an online diabetes community. A highlight of the session included a moment when a woman in attendance shared how she has had diabetes for over 40 years and wanted to know how she could connect with others like her – at which point a gentleman moved from his chair to the chair next to hers. The simple action was so powerful and while the action took place in real life it is so much like how being part of the online community really is.

The Parents of CWD session was great fun as well. It was hosted by Dr. Daniel DeSalvo, a pediatric resident at the Children’s National Medical Center – also recipient of the David C. Leach award for research on medical errors with Type 1 diabetes patients and a PWD. During this session Daniel moderated discussions regarding concerns parents have for their kids and how to discuss diabetes with our kids. Somehow the session got a little derailed (I’m not admitting guilt) and turned to the need for awareness posters in pediatric offices (again not admitting guilt). Dr. DeSalvo handled the derailment with grace and brought us back around to discussing the challenges of parenting children with diabetes.

After the breakout sessions the D-mom posse I was hanging with met up with Kerri Sparling and Scott Johnson (he totally crashed the conference). I mentioned again the need for awareness posters in pediatric offices and Kerri had a great idea. The International Diabetes Federation has created a number of great posters including one that highlights the most common symptoms of new onset Type 1 Diabetes. Kerri suggested printing out the poster on our own dime and delivering a copy (or more) to our doctor’s offices. I’m talking about our general practitioners office and our pediatric offices. The lack of awareness posters/materials in general practitioners offices has been a real pet peeve of mine. We nearly lost our littlest, he was diagnosed with massive ketones, sky-rocketing blood sugars and severe dehydration. I thought all his symptoms were the flu or another virus. Had I read an awareness poster in the doctor’s office at any one of the 3 dozen times I had previously visited the office I would have known better. Too many kids are lost each year due to missed diagnosis or delayed diagnosis. It’s time to get the word out and educate general practitioners so no child is missed. You can download a poster HERE. I will admit these are not my favorite posters – there is a better one also produced by IDF but I couldn’t find it to share. I will update the link when I find it. Also – I would like to see IDF or anyone – create a poster that depicts children because I believe one of the biggest misconceptions of diabetes is that it only affects adults. Many people don’t know that kids can get diabetes – I didn’t.

Scott needed (wanted) a Diet Coke so we all set off on a Walk and Talk that ended in the hotel bar area – coincidence? We were in the bar area and there was a waitress so I felt obligated to order a martini. It is here that I met Christopher Angell who was at the conference with GlucoLift who unknowingly played a crucial role in punking me. Another D-mom Carie (who I met for the 2nd time at the conference but had first met in 2009 at Friends For Life in Orlando) decided to screw with me and nearly had me convinced that the Christopher sitting beside me was in fact Mr. Chris Sparling.  Me asking Christopher (in front of Kerri) if he was indeed Kerri’s spouse provided all those in attendance with great amusement. In real life relationships most people wouldn’t consider punking new friends so early in the relationship – the thing with DOC meet-ups is although some of us were meeting in real life for the first time – we have been exchanging ideas, support, and laughter for a good deal longer – thus punking is a completely acceptable means of interaction. To be honest I was honored that Scott had no problems having his own go at me regarding his wrist tattoos – which btw are not the dates he started blogging.

The last session of the conference included Bill King – a marathon runner with Type 1. He rocks. During that last session I may have chit-chatted a little too much – often inspired by something Bill shared. Perhaps sitting next to DOCers was not the wisest choice since I am chit-chatty in general. (yes my teachers had to move my desk often – who would’ve imagined) At one point the couple sitting in front of us moved to another section – I felt bad but then they won the give away with all the TCOYD goodies so it all worked out.

The conference was great fun and I did manage to learn a few things I didn’t know.

I met some new friends and laughed with friends from the DOC and honestly that alone is worth the time and money spent for the conference.

Picture – or it didn’t happen.

coyd3photo tyoydphoto

Dinner With Schmucks

You Are Cordially Invited….

Day 20 Health Activist Writers Mont Challenge

5 Dinner Guests. Who are 5 people you’d love to have dinner with (living or deceased) and why?

I’ve had all day to consider this post. I considered going the ‘Jesus, Gandhi, Buda, Mohammad, & Abraham (the one with all the sons as apposed to the one with the hat)’ route but reconsidered. I have a great deal of faith but this isn’t a blog about my religious beliefs. Although I would like to take a quick moment to say that I believe “Faith is not the absence of doubt, it is the ability to believe in the presence of doubt” – read that quote somewhere, I should google it to site the source but I’m hanging on by a thread right now (exhausted) thus I will leave the googling to you. Let me also add that I respect all religious beliefs (or non-beliefs) and pass no judgment.

Digressed – sorry – moving on.

I also considered inviting key scientists and researchers from the past including; Fredrick Banting, John MaCleod, Charles Best, Alexander Fleming, and for fun, because I think he would be a riot Albert Einstein. (For non-diabetes readers the first three scientists discovered insulin) While I have a great deal of respect for these men I’m not entirely sure they would be the best dinner guests for me – I fear I would be lost in all the sciency stuff.

Next I considered a dinner with philosophers such as Plato, Socrates, Confucius, Galileo, and Aristotle. Again I have a great respect for the genius these men had – that same genius would likely be over my head without cliff notes to help me understand all they discussed. Although I am keeping Confucius on a stand-by list since I would like him to look at some fortune cookie fortunes I have received that begin with “Confucius says…” and ask him if they are accurate quotes.

Like I said I had all day to consider my dinner guests.

When it came down to it I have already had this amazing dinner with 5 fabulous people. The dinner was on a Friday evening here in Austin on March 30th. The guests included a JDRF Outreach Manager, a CDE (certified diabetes educator) extraordinaire, two fellow JDRF volunteers and also D-mamas (moms with a child who has diabetes) and the guest of honor – the DOC’s very own Kerri S. who was scheduled to give the keynote at the 2nd annual JDRF Type 1 Now Conference the next day.

I was so thankful to Amy (JDRF Outreach Manager) for inviting me to attend the dinner. I remember calling Amy giddy with excitement after reading that Kerri was going to be the keyone. I likely sounded like a child about to see Santa for the first time. I wasn’t alone in my giddiness – my good friend, fellow D-Mama and JDRF Kids Walk Volunteer Andrea was also as giddy. We were both huge fans of Kerri’s blog and could hardly believe we would get to enjoy a dinner with her.

Me and my two fellow D-mamas arrive to the restaurant first. While Amy had requested a table on the patio when she made the reservation, one was not available – no biggy Kerri was coming. Teresa (other Dmom), Andrea and I caught up on recent events, ordered beverages and relaxed. Shortly after we ordered our beverages Cassie arrived (CDE). As she pulled out her chair to join us I realized the placement of the table was not acceptable. The pathway between our table and the table behind ours was narrow even prior to Cassie being seated. The guests for the other table had not yet arrived, thus when they did arrive and someone was seated in the chair opposite Cassie the pathway (main thoroughfare for servers) would be reduced to approximately 6 inches. I tried to remedy the problem by moving a large floor plant over and then scootching our table over (management and servers alike gawked at us (me) while I was orchestrating the table move). Unfortunately adjusting the table location did not alleviate the poor logistics of the walk way. Amy and Kerri were due to arrive momentarily. I approached the manager ( the same one that had shook his head in my general direction during the table placement fiasco moments early) and pointed out the perceived problem. He concurred and assured me he would find us another table. (sadly – we could not take our waiter with us – I forget his name but I’m certain he would have been an ‘outstanding’ waiter)

Our new table – a secluded corner on the patio with a panoramic view of the hills. Well played Mr. Manager.

Amy and Kerri arrived, beverages ordered and conversation ensued. I’m a bit embarrassed to admit that in all the excitement of the pending conference, the view, and the table relocation we neglected to introduce ourselves to Kerri. Thus she was inclined to ask for introductions – sorry about that Kerri if you read this. We played round robin introducing ourselves, explaining our involvement with diabetes and discussed a possible unhealthy obsession with Justin Beiber (not me or Kerri just to be clear). Drinks arrived (mine was wrong – not that I would have cared – thus I was given a second one – score), we ordered dinners and spent the next two hours laughing, sharing, and just having a wonderfully good time.

It was an absolute pleasure to have met and shared a meal with one of the DOC’s celebrities and my good D friends. Maybe a dinner with spiritual leaders, philosophers, or brilliant scientists would be enlightening but I will always take laughter, support, and friends over enlightenment.

Hoping to meet up with more of the dfabulous DOCs at FFL this July.