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.

Learning, Loving, Laughing & Tears

Our family just spent a week in Orlando at the Children With Diabetes Friends For Life conference. I have so much to share; things I learned, things that made me laugh, things that made me cry, things that made me go hmmm?.

Where does one start? I’ve read over a dozen wonderful recaps. Many of the recaps made me teary-eyed, a couple made me down right cry, some made me giggle and some made me want a complete do-over since I clearly missed sessions I should have attended.

IMG_1981

Meri, Sara, Me, Brian – sadly Briley is not pictured.

I started the conference by working the You Can Do This booth in the exhibit hall. I hope everyone got over there to share their thoughts and be a part of the project. I loved meeting so many people who came to the booth and working with some of my most favorite DOC members. Thank you Sara & Kim for letting me be a part of it this year. I’m told the 2013 video will be up shortly but until then please check out the 2012 video.

I suck at note taking – turning this:

notesphotoInto something that will make sense to you requires more organization than I am capable of – yet I’ll try.

Things I learned:

Dr. Bob and Natelli Bellini hosted a Stress management session on Thursday afternoon. It was an amazing session and I couldn’t scribble notes fast enough.

  • Own your stress – sometimes its just life, sometimes it just is.
  • We are often told to change our perception but that isn’t as easy as it sounds – it can lead to being stuck in the future or in the past. Focusing on the right NOW and how we can change a circumstance with adaptation, knowledge and seeking additional knowledge is more effective than simply trying to change how we see things.
  • Recognize that no parent is right all the time – says Natelli (shhh don’t tell my kids) I jest – but I need to remember that I’m not right all the time and sometimes I learn from my kids and there is always something I can learn from others.
  • “Just get the numbers” Getting teens with diabetes to check their sugars as often as they should can be difficult. Find your child’s currency and use it to get the numbers. (phone is the best currency for most – tough love with diabetes)
  • “I don’t care how they feel – I care that they do it” Says Natelli – We all know that diabetes is annoying and time-consuming but getting the numbers is the key so while the kids are frustrated with diabetes it is equally if not more important to get the numbers than worry about how they feel about it all the time. (I agree and disagree at the same time – there has to be some happy medium – a way to get the numbers while being able to recognize and empathize.)
  • “Dont suffer from diabetes” Natelli – followed up with words from Dr. Bob “suffering comes from the attachment of an outcome” Remove the expectations and that will limit suffering.
  • There are a bazillion websites that offer medical advice. Be sure the site you go to has safe information – look for the HONcode which focuses on the reliability and credibility of information. Looks like this one found on the CWD website.
HONphoto

Even if a website has this HONcode – please still check with your HCP before making changes to your diabetes management plan.

To end the session Dr. Bob had us all close our eyes, take a deep breath and feel the community around us. That was powerful. 

I attended another Stress management session with Dr. Bob on Friday. His session was more about Mindfulness and living in the moment – plus lots and lots of breathing. I didn’t know I had been breathing all wrong. We did some meditation (almost fell asleep – but Dr. Bob said that its ok to fall asleep because at that time sleep is what you need). Books Dr. Bob recommended included:

Wherever You Go, There You Are by Jon Kabat

Mindfulness For Beginners by Jon Kabat

A fellow attendee recommended this book:

The Buddha Walks Into A Bar…A Guide To Life for a New Generation by Lodro Rinzler

Also in this session a friend I was sitting with asked a question. All kind of emotions exploded into the question – the question had many parts and one of them included “how to avoid losing my shit” (paraphrased). Dr. Bob came right to my friend. He spoke to her like she was the only person in the room, one hundred percent of his attention was with her and I felt like I was right there too, not just because I was sitting next to her but because I think so many of us have the same questions and fears about loosing our shit. While Dr. Bob was talking he kept saying “loosing your shit, expel the shit, there’s a lot of shit, shit, shit, shit, etc.” It was the best. He was able to recognize what was needed and provided it. At least I felt like that and I hope my friend did too.

IMG_2035

random photo to break up all my rambling text – Banquet Ball on Thursday with two beautiful ladies and my amazing Sweetstuff – this photo almost makes my heart explode.

The Moms discussion group was fabulous and the time went too fast. I wanted to hear more moms share stories and ask and answer more questions. I wanted us all to hug and laugh and cry together. I loved that Moria came in about half way though and shared her thoughts about being part of the “Yes club” – let the kids do their stuff. Mistakes will happen – let them. She did say that the one thing she insisted on was a blood sugar check before driving. TRUTH! I loved hearing CWD faculty member, Intissar Ben Halim, share her thoughts about how the teen brain frontal lobe gray matter is a big-ol-mess. (no she didn’t say ‘big-ol-mess’ but I suck at notes and so I’m taking a number of liberties in regards to how she said teen brains develop). The session was too short. I didn’t want it to end – although the conversations were wonderful it was more that I was in a room with 40+ other moms that were just like me.

ablurr

another random photo to break up all the darn text – This is Sweetstuff with Will Cross – mountaineer and explorer extraordinaire

I didn’t get to as many break-out sessions as I would have liked. I got distracted with awesome conversations in hallways and in the exhibit hall. I would so love for CWD to videotape all the sessions and then figure out a way to share them, at least with those that were in attendance – it sure would make my lack of note taking less frustrating.

The exhibit hall is a favorite for all attendees. I let my kids explore on their own opening night while I hung at the YCDT booth. They were like little scavengers gathering up goodies (SWAG – not the scientific kind – the holy cow how am I gonna get all this home kind) – I think my youngest collected about a dozen silly putty eggs from the A1C Champions booth, all three got backpacks with sleeping bags and carb free snow-cones from Nova Nordisk, each got a mini-Lenny from Medtronic, sunglasses and spy-photos from OneTouch, Glucolift glucose tabs and photos from the photobooth presented by Tandem, popcorn from The Diabetes Scholars Foundation, t-shirts including my favorite from A Mile In My Shoes – a company founded by Joe Solowiejczyk, really great bags from Freestyle (these were instrumental in getting all the SWAG home), and light-up pens from Omnipod.  Yes I included links to the companies that provided all the SWAG – thank you to all the sponsors that help make CWDFFL possible.

mphoto

last photo – promise – but darn it there is just so much text – better than some random cat picture. Sugarboy getting is caricature on – sponsored by Nova Nordisk – they did me but I swear I looked like Fran from the Nanny – it didn’t make it home.

Other posts about Friends For Life 2013 – If the following posts don’t make you want to start packing for 2014 I don’t know what will – I mean aside from being surrounded by 3500 of your closest friends, the top researchers and medical professionals in the country, food with lists of all the carb counts, the hot sticky weather of Florida in July (wait is that plus?), opportunities to meet some of your favorite diabetes bloggers and authors as well as a few celebrities living well with diabetes.

Joanne – Death of a Pancreas ( I didn’t include a link to just one post – she has written at least 3 about FFL)

Moria – Despite Diabetes

Meri – Our Diabetic Life 

Katy – Big Foot Child Have Diabetes

Briley – indpendence

IMG_2081

ok this is the last picture – tween and teen dance night. no parents allowed. It was fabulous.

I have two other posts working in regards to the conference but when I try writing them I get very tongue-tied and overly emotional. This was the easy post – the one about learning and getting SWAG.  The other posts are about DOC heroes and about the green bracelet – the one that is still in pristine condition and hidden in the large yellow envelope 4 inches from me.

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

Freedom

This is my first remote post – meaning I am not sitting in my own desk chair with a dog curled up at my feet. I am currently sitting at a place called Main Event. It’s an arcade, pool hall, bowling alley, rock gym, laser tag place. It is a fantastically wonderful magical place!

On Monday nights there is a special it’s called Monday Night Madness. For only $20 a kid they get to do unlimited rock climbing, bowling, laser tag, mini glow golf, and video games galore. It starts at 4pm and ends at closing which is something crazy like 2am (btw there is a full bar too).  The latest we’ve stayed is midnight – since we are here by 4pm that is 8 hours of fun for them and quiet time for me (even with todays pop 40 blaring from the bowling lanes).

The kids check in every 30 minutes or so to grab some cheese fries, sip some water or if I’m lucky sneak in a hug and tell me how awesome of a mom I am for bringing them to Main Event – if they only knew it was more about me than them. (ok maybe equal me and them).

Tonight I have so much to catch up on. So many DOCers (people involved in the diabetes online community) have returned from the Children with Diabetes Friends for Life conference with stories to tell. My family couldn’t attend this year so I was living through them – all the tweets with quotable moments from different conference sessions were fantastic.

Here are a few FFL posts I have enjoyed so far:

Karen at Bittersweet Diabetes 

Kerri at Six Until Me 

Scott Strange at Strangely Diabetic

Another great one from Scott 

Jess at Me and D

Shay at Just Same Changes

Allison at Diabetes Mine

Meri at Our Diabetic Life

Martin at Diabetically Speaking

Kate at Tenaciously Sweet 

Kelly at Diabetesaliciousness

This is all I’ve read so far – I’m certain more will be posted soon and there may be dozen’s I just haven’t gotten to yet.

Back in April during the Health Activists Writer’s Challenge Month there was prompt that asked if I titled my posts before I wrote or if I titled them after. Normally I title them before because I have a specific thing I plan to write about. For this post I titled it “Freedom” because I had intended on writing about the fact that I dropped my Sweetstuff off at the movies without me – first time. I wasn’t worried about diabetes – I was more worried about her talking to strangers. It was great allowing her the freedom to grow up a bit and not worry about diabetes.

I was also going to write about the freedom a place like Main Event allows me to relax while knowing my kids are safe and entertained. I did touch on that but then I went a different direction – I shared posts regarding the Friends for Life conference. I was contemplating a change in title but realized it isn’t necessary. I haven’t been at the FFL conference since 2009 – but I do remember the sense of freedom I felt after each conference. Freedom to raise strong, healthy, amazing children with diabetes. The freedom to talk about diabetes, the freedom to admit that I do get overwhelmed, I do get sad, I do get very angry and freedom to admit I make mistakes and need help.

No title change necessary – I hope you check out the blog posts I’ve shared and find more and might share them with me in case I have missed them.