All Nighters – Not What They Used To Be

When I was a teen I my friend Rita would spend the night often and we would sit in my basement bedroom singing and dancing to music from Def Leopard, Madonna, Poison, Bon Jovi, and other hits of the 80’s. On one such night we each put cheap sunglasses as we sang along with “Sunglasses At Night”. We played board games and laughed nearly till dawn.

In college I would go out with friends on Thursdays for karaoke and sing songs from Grease, Cher, and a favorite called KawLiga about a wooden Indian (only we changed the line ” he don’t know what he missed” to “He never squeezed her tits”. We often partook in dollar shots of tequila which allowed me to believe I could play pool. It wasn’t uncommon for us to close the bar.

Once in the Air Force my hubby and I as well as some friends decided to drive from San Antonio to Lake Charles (5 hours away) just to play slots then drive home. There were 5 of us crammed into my hubby’s tiny hatchback. We left at 10pm, arrived around 3am, played slots for 40 minutes and drove back. It was crazy fun.

Another time while in the Air Force Chad and I, after an evening out playing pool and dancing, drove down to Corpus Christi from San Antonio (3 hours) just to watch the sunrise then drove home.

Last night I was up until 3am. Everyone else slept soundly. I watched multiple episodes of The West Wing stopping every couple of hours to check blood sugars for both of my kids with Type 1 diabetes. There was no laughter (ok I did giggle a couple of times because of West Wing antics) but mostly I sat curled up on my couch hoping that the next check would be within range and I could go to bed.

Not last nights shrapnel - this is from last week. Different night - same process.

Not last nights shrapnel – this is from last week. Different night – same process.

As a parent of kids with diabetes nights like last night are not uncommon. They don’t happen every week but sometimes they happen more than once a week. If the kids have high blood sugars and require large doses of insulin I can’t go to bed when they do. It isn’t safe. Either the insulin doses will bring their numbers down within a safe range in 2 hours or they won’t. I can’t assume anything. Diabetes doesn’t play fair.

Sometimes the insulin corrections drop the kids too fast. Other times the corrections don’t make a dent in the high numbers and the kids will require an infusion set change (place where the tubing from the insulin pump is attached to their bodies). An infusion set change means another dose of insulin and 2 more hours of waiting (check, dose, wait, repeat). If the kids dropped too low it means giving them fast acting carbs (normally a juice) while they sleep and another hour of waiting.

I can’t go to bed and set an alarm like I used to. I have alarm fatigue. Basically I don’t hear the alarms. I have slept through multiple alarms in the last year so now I am simply afraid to trust myself to get up to a middle of the night alarm.

It is the life of a parent(s) of children with diabetes. I know I’m not alone – I know this because I see my friends on Facebook and Twitter at midnight, 1am, 2am. I love not feeling alone but it breaks my heart so many of us can visit when we should all be sleeping and our kids should all be safe and diabetes shouldn’t be winning.

 

 

 

Shout out to Stephanie

I just had the best conversation with Stephanie who works for Universal Studios Online ticket sales in Orlando.

I am trying to move Heaven and Earth to get my family to the Friends for Life Children with Diabetes conference in Orlando this July.

We had attended the conference in 07, 08, and 09. Finances and life prevented us from attending since 2009. Now we are in CA and the cost of attending has doubled since we can no longer drive to the conference like we had when living in TX.

For me the conference is reason enough to hop a flight from San Fran to Orlando. It is also enough for my daughter and youngest son – both who have Type 1. However, while my husband enjoyed the conference in the past, the costs associated with traveling from CA to Orlando FL are a bit overwhelming. Thus – we are playing the Harry Potter card.

Harry Potter World at Universal Studios opened in 2010. We have been promising the kids a trip to the park for a number of years but again finances have gotten in the way.

Ive been researching airfares, hotels, rental cars and theme park tickets all morning.

I love the Coronado Springs Resort at Disney (the location of this years Friends for Life conference), however due to costs I had been researching other hotels as well. In addition to researching transportation options from Disney to Universal or Universal to Disney.

I had read online that if one were to purchase a 2 day Universal park hopper ticket that transpiration from Disney could be included – thus a call to the Universal Studios Online Ticket sales.

Stephanie answered my call. Unfortunately there is no free transportation from Disney to the Universal parks. Still I’m chit-chatty so I was brainstorming with Stephanie about transportation and vacation packages as well as programs available at Universal Parks for people covered by the American With Disabilities Act – those of you in the D know – know what I am talking about. Of course during that part of the conversation I shared about the conference and the options Disney has for those with special needs.

During that part of our chit-chat Stephanie shared that her husband of 22 years has had Type 1 since he was 9. WOW – such a small world.

We talked about scary lows, checking blood sugars before bed (Stephanie cracked me up when she said sometimes she will choose the blue icing to treat her husbands lows in the middle of the night – there will be evidence), how MDI has worked well for her husband, and scare tissue from using the same body real-estate for shots. And since not everything is D related we also chatted about Harry Potter and Lord of The Rings – clearly Stephanie and I could end up as great friends because she speaks my language.

Of course I shared how great Friends for Life is and encouraged her to register her family to attend – they live very close to Disney so it is totally doable.

Stephanie – if you are reading this – I thoroughly enjoyed our chit-chat and I do hope that both our families can attend Friends for Life this year. Please shoot me an email if you will be attending so we can meet.

(Yes I told Stephanie my blog name – not to plug my blog but because I wanted her to have a way to let me know if her family would be attending)

Now back to more research to find deals that will get my family to the happiest place on earth.

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From Inside It’s a Bugs Life in 2009 Friends For Life

Universal Studios Friends for Life 2008

Universal Studios Friends for Life 2008

Magic Kingdom Friends for Life 2007 - BTW Sugarboy was a little high when we took this picture - thus unhappy.

Magic Kingdom Friends for Life 2007 – BTW Sugarboy was a little high when we took this picture – thus unhappy.

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

HAWMC

Greetings.

I suck. (Yes I’m self-deprecating today)

I haven’t blogged for an extended period of time. Sadly this comes at a time when I have also applied for a scholarship to the Stanford Medicine X ePatient conference (thus – if you are with the Medicine X scholarship department please see older posts and know that I am a serious ePatient but just swamped in the last couple months).

Thankfully WEGO Health is about to begin the yearly Health Activist Writers Month Challenge (HAWMC). It begins April 1st and you can joy the fun by clicking HERE.

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The writers month challenge helps keep me on task. Laundry, PTA, Primetime TV, and naps will take second chair to writing each day because I love a challenge.

If you have signed up or do sign up to participate you have or will be sent a list of prompts. When or if you have received your prompts you might notice my blog address on a few. First I didn’t realize WEGO would ever consider using any of my suggestions or that they would share who suggested the prompts if they did. Second I may have sent those suggestions in the middle of the night, sleep deprived, high on Reese’s Peanut Butter Eggs (no not HIGH like in blood sugars – I have a functioning pancreas – High as in a self-induced peanut butter chocolate euphoria).

Let me just say this – if you find my suggested prompts inspiring, fun, or imaginative – great it was totally me. If not – clearly my email was hacked.

 

I hope to see many of my blogging friends participating and I hope to meet a great number of new friends through HAWMC. Some of my favorite online peeps are those I met during last years HAWMC both in the diabetes online community and other chronic illness communities.

Good Luck and I’ll see you in the HAWMC.

WTFedness

Yesterday a FWD (Friend with diabetes) posted on a social media site about a low blood sugar before dinner. She included the phrase “WTFedness”. I didn’t find her low humorous but the phrase “WTFedness” cracked me up and I told her as much.

Diabetes has been frustrating the crud outta me lately. Unexplained stubborn highs for both kids. Multiple bad insfusion sites (place where insulin pump is connected to their bodies). Pharmacy mishaps when ordering test strips and insulin. Late night lows/highs that require me to burn midnight oil.

At some point in the last week I had thought – this build up of frustrations needs a word. Truly I did think that. Then comes my friend’s post with the phrase ‘WTFedness’ (is it a phrase when it is only one word but that word is short for a number of words?)

WTFedness – yup pretty much says it all when it comes to my frustrations.

My friend wrote a blogpost about WTFedness yesterday – you should read Kelly’s post HERE.

Last night was a whole night of WTFedness.

Sugarboy

Before dinner was 241 – correction given with dinner bolus.

After dinner 7pm 262 – correction given (miscalculated dinner?)

Bedtime check 9pm – 278 – huh? correction given

11pm check (hoping all would be well and I could go to bed) 262 – WTF Diabetes – disconnected tubbing from infusion set (which was less than 24 hours old and worked properly earlier in the day) – primed tubbing (sent insulin though tubbing to clear any bubbles) – reconnected and gave a correction bolus. (how many parentheses are allowed in one sentence?)

1:00 am (really expecting all to be well and the boy would be going down) 262 – Yes this is where the WTFedness comes into play. Put in new infusion site and new insulin in pump. Moved the boy to my bed to keep an eye on him and set my alarm for 3am.

Slept through my alarm at 3am. Checked him at 6:30 – blood sugar 90.

All this of course happened just a day after his blood sugars were ridiculously high including a “High Glucose” the day before due to a bad site. Which was also the day before his endocrinologist appointment – screw you murphy and your damn laws.

So my question is do I have a box of bad infusion sites (same box working fine on daughter) or has the switch to Humalog from Novalog created a new level of havoc? Or is just typical diabetes WTFedness?