Dear Newly Diagnosed,

A friend just sent me a text telling me of her friend in the UK whose son was just diagnosed with Type 1 diabetes.

He’s 11. If he is a wizard he’ll be heading off to Hogwarts in a month and no doubt Madam Pomfrey would fix him right up. Perhaps there is a potion similar to Skele-Gro that can be used to grow new beta cells.

If only.

The text from my dear friend regarding her friends sweet boy is just one of three I’ve received in the last few months. I’ve connected via the phone with the other two moms but since this friend of a friend is in the UK, phone calls are more costly so I told my friend I’d write this post so she could share it (my friend asked if she could share my blog with her friend). I haven’t written in some time so my recent posts may not make sense or be relevant to a newly diagnosed family.

Why didn’t I write ‘a parent of a newly diagnosed child?’

Because honestly when a child is diagnosed it is a family affair. I mean no disrespect to those living with diabetes, I’m not suggesting those of us with fully functioning pancreases will ever truly understand all that it is to live with diabetes. We won’t. Just like those who have diabetes that don’t have children with diabetes may never truly understand us. The best we can do is be empathetic and try our best to be supportive of each other.

Crap I’ve already digressed and now the new parent is wondering when the bloody hell I will get to the point.

So here goes, if you are a parent, grandparent, family friend, or sibling of a recently diagnosed child, I am sorry you have reason to read this.

There will be many well-meaning folks that will do their best to console you. They will say things like:

“At least it’s not cancer” Yes, cancer is bad. Very bad. And yes at least diabetes is not cancer, but right now diabetes is a huge scary monster that has, in your mind, stolen your healthy child. Thus, unless the folks who say ‘at least it’s not cancer’ have had cancer, lost someone to cancer, have diabetes, or love someone with diabetes, they don’t understand the difficulties of a lifetime diagnosis but they mean well.

“It could be worse” Things can always be worse so this phrase can be used for anything. Stubbed your toe, could be worse, could have whacked your balls on the corner of the table as you tripped, thank goodness it was just your toe. Still your toe hurts and knowing it could be worse doesn’t make you feel better. Again, well-meaning people say stupid things because they don’t know what else to say.

“Oh my granny had diabetes, lost her leg, she did.” People say this in an attempt at empathy. They are trying to connect to you. They are trying to say they understand. They do not know that when a person with diabetes or a parent of a child with diabetes hears of amputations, complications or death due to diabetes we immediately think of how that could happen to the ones we love, or themselves if they have diabetes. Of course pwd/cwd (people with diabetes/children with diabetes) and those who love them don’t need or want these reminders. That B roll is often played in our minds. Thankfully it becomes a re-run that we skip over as we watch those we love with diabetes thrive.

You will also get a lot of questions and you will get the same questions repeatedly from family and friends for the first bit after diagnosis and it will be both annoying and comforting. Annoying because you are answering the same questions again and again but from different folks. Comforting because those that ask questions care about you and your child and that will let you know you have support. Just keep in mind it is a new person asking each time unless you have some self-absorbed neighbor that asks the questions but only as a courtesy before they start telling you about their most recent colonoscopy. You know the type – the type that just wait for their turn to talk. You should totally toilet paper that neighbor’s house, but then you’d have to listen to them whine about how their house was toilet papered. (If there is no such thing as toilet papering a home in the UK – it is when full rolls of toilet tissue are tossed up and around trees and shrubs in the garden.)

This is already excessively wordy. Here is a picture of my dog to break up the wordiness.

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There are many ways to manage diabetes. There are insulin pumps that are worn 24/7/356 that infuse insulin into the body. Most types of pumps have tubbing that connects to the body via an infusion site that is moved every 3 or so days. Most newly diagnosed pwd/cwd spend at least a few months taking daily injections. This is often referred to as MDI (multiple daily injections). There would be one injection of a long acting basal insulin that helps maintain sugar shifts due to hormones and the normal functions of the body. The other daily injections are taken when the pwd/cwd eat or to correct a high blood sugar. Using an insulin pump means no long acting insulin since the insulin pump continually infuses insulin to simulate what a working pancreas would be doing and then is also used to bolus insulin at meals and to correct high blood sugars. The amounts of insulin various based on amount of carbohydrates consumed, current blood sugar, and insulin sensitivity factor.

All pwd/cwd check their blood sugar multiple times a day using a blood glucose meter. A tiny poke of the finger to draw a tiny droplet of blood and 5 seconds later a little device tells you a number. It is not a report card. It is not a good or bad number. It is a just a number. The number will help you decide how much insulin is needed or if carbohydrates are needed. I stress the not a good or bad number because small children will attach their self-worth – shoot adults occasionally attach their self-worth to that number. Imagine if 5-10 times a day you were told you were good or bad. So, it’s a number and a decision is made based on the number then the world continues to rotate on its axis.

Obviously if you are a parent of a recently diagnosed child or a recently diagnosed adult you know about bolusing insulin and checking blood sugars. I included those bits for extended family and friends who did not get a crash course about diabetes care in the hospital. But the reminder about good vs bad is for everyone.

Below are a list of insulin pump manufacturers if you are interested in learning more about insulin pumps. There is also a link to the Dexcom page. The Dexcom is a continuous glucose monitor. It monitors blood sugars 24/7 for the length of time it is worn. My 3 cwd use the Dexcom G5. They typically wear each sensor or 14-21 days (per manufacturer it is only approved to be worn 7 days but very few people follow that). My two boys use the Animas Ping insulin pumps. My daughter uses the Tandem T:Slim. We have never tried the Omnipod insulin pump. Yes they are listed in order of our preference although Animas and Tandem are equal in my preference. Animas, Tandem, and Medtronic all offer an integrated pump (Continuous glucose monitor data can be seen on pump screen) but our family choses not to use integrated pumps since CGM technology advances faster than pumps and we like to be able to use the most recent CGM tech. Also the Enlite CGM that is used with the Medtronic pump is substantially inferior to Dexcom technology per user experience and data submitted to FDA. There will be a new Tandem pump released by year-end and if I understand things right it will be able to be updated with new CGM tech as it comes out.

Pumps:

Animas 
Tandem

Omnipod

Medtronic

Continuous Glucose Monitor: Dexcom

I know much of this seems overwhelming and the pump/CGM stuff may be too much to think about right now.

If you or your child was diagnosed recently know that there is a grieving process.

Receiving a diabetes diagnosis is hugely life changing. As a parent I have received 3 such diagnosis. Each time my reaction has been different in some ways but the same in many others. Each time I have had to allow myself to grieve for the future I had pictured for my kids. I do believe my kids can do everything people without diabetes can do but they will always have to do so much more along side it. So I grieve for their loss of freedom and their loss of completely carefree days and nights. People with diabetes climb mountains, compete in professional and olympic sports, race cars, become rock stars and actors, serve in public office, are school teachers, truck drivers, doctors, nurses, mail carriers, and more. You or your child should never consider the possibility that you/they couldn’t be anything they want to be.

There will be sleepless nights when diabetes behaves badly with high or low blood sugars and as a parent you stay up or set an alarm to check your child’s blood sugar while he sleeps. I strongly suggest sharing this responsibility with a spouse. I took on all diabetes care myself when my youngest (first one) was diagnosed since I wasn’t working outside the home. Sleep deprivation is a bitch. It causes weight gain and can lead to depression. Share the responsibility and take care of yourself or you will be of no use to your child or anyone else.

I feel like I’ve rambled on far too long.

Again I am sorry you have reason to be reading this.

I would like to tell you it gets easier.

It doesn’t. But, you get stronger. Your child gets stronger.

A side effect of diabetes in children is they (the children) often grow up faster. Facing ones own mortality can do that. To reduce the negative side effects of diabetes I encourage you to keep doing everything you were doing before. It means more planning and it likely means trusting others (after a thorough tutorial) to care for your child. Make diabetes second or even third to everything else. Say good morning and hello before asking for a number. Focus on saying yes to as much as you would have said yes to before the diagnosis.

In case you missed it in my profile. I am not a doctor or medical professional. I am a mom of three children with diabetes. My youngest was diagnosed at age 2 in 2007. My oldest was diagnosed 2 years later at age 9 and my middle child was diagnosed 4 years after that at age 11. Don’t worry – multiples is rare. We are just special. I am not an expert at anything. I have not always followed the advice I’ve shared. I only can share it now because I learned the hard way what didn’t work.

My last piece of advice is to find others like you. If you are a parent find other parents. If you are a newly diagnosed adult find other adults with diabetes. Online connections count. You can always find me via my Stick With It Sugar Facebook page and you are always welcome to email me through this blog. I will do my best to answer questions or connect you with smarter people that can answer questions I can’t answer.

To quote Christopher Robin (AA Milne)

“You are braver than you believe, stronger than you seem, and smarter than you think.”

 

 

I Get It Wrong Often

Last night my Middles, (13 year old teen boy) was over 400 before going to bed.

He was 238 before dinner and bolused (used his insulin pump to deliver insulin into his body) for dinner with extra insulin to correct the high.

That was 4 hours before he was going to bed.

He was surprised by the high blood sugar before going to bed.

The infusion site he had on was only 36 hours old.

I chose not to drill him regarding what he might have eaten after dinner that could have resulted in the high but I did assume he had eaten something or somethings.

I just told him to correct (bolus insulin for the high) and to go to bed.

I set alarms (two) on my phone to wake up and check his blood sugar around midnight.

I don’t remember hearing the first alarm.

I do remember hearing the second alarm and I remember silencing it.

I awoke with a start at 4:11am realizing my neglectfulness.

In the moments walking between my bedroom and my sons bedroom my heart pounded against my ribs. The fear parents of children with diabetes experience when we know there is the slightest possibility our kids could have experienced a sever low at night can be monstrous. The relief when we see our child sleeping peacefully while their chest slowly rises and falls with each breath is equally as immense.

My boy was sleeping soundly and breathing normally. Exhale.

I checked his blood sugar.

403.

Fuck.

My assumption that he had eaten some rogue food between dinner and bed was incorrect. Instead the high before he went to bed was very likely due to a failed infusion site (place that insulin from his pump is infused into his body). The site needs to be replaced a minimum of every 3 days – his most recent site was only 36 hours old and shouldn’t have failed.

I had to wake the child and ask him to come downstairs to replace the site and insulin in his pump.

He didn’t complain. He felt like crud and he knew that insulin was the only way he would feel better.

Ok he whined a little. It was 4:15am and he didn’t sleep as soundly as I had first imagined.

New site, new insulin in his pump and a large bolus to correct his blood sugar.

We don’t own a ketone meter (a small device similar to a glucometer that checks the amount of ketones are in the blood via a finger stick/drop of blood), ketones are often present during periods of extreme high blood sugars. Ketones are produced when the body burns fat for energy, excessive ketones poison the body and when combined with dehydration can result in ketoacidosis, a life threatening condition.

Before he came into the kitchen to get his new site and insulin I heard him in the bathroom. It was too late to ask him to use the ketostix (paper strips with a small patch on the end that is chemically treated to change color if ketones are present). The ketostix are not a very accurate way to test for ketones – because the paper sticks check the urine for ketones the result is about 4 hours delayed, meaning not the most accurate ketone level, but at least it is an indication of what was happening in this body. Alas – he used up all his urine so no ketone check.

Sent the boy back to bed.

He will need to go to school regardless today. I am scheduled to work.

In the hour since I awoke with a panic I have been berating myself for yet another fail.

We own Dexcom CGMs (continuous glucose monitors). CGMs check a person’s blood sugar every 5 minutes and have alarms that can alert the wearer and others that blood sugars are high or low. Had he been wearing his CGM we likely wouldn’t have ever got to be in the 400s last night and certainly wouldn’t have stayed in the 400s all night as I slept through phone alarms.

Had I done the nagging parent thing at bedtime to determine if he had actually eaten between dinner and bed I might have been able to determine that the high was in fact due to a failed infusion site rather than by a teen that likes to snack and forgets to bolus.

Had I just stayed up between 10pm and midnight I would have not been sleeping at midnight and I would have been able to replace the failed infusion site 5 hours ago vs. letting my son sleep with such dangerous numbers.

Like I said, I get it wrong often.

I’m sorry middles.

Ps. In the 40 minutes since I wrote this and went to take a shower for work I spoke with my husband. He confirmed that he observed Middles eating multiple tangerines before checking his bedtime blood sugar. Thus, it is likely he was high before eating the tangerines but also likely he forgot to bolus for the tangerines. Suggesting that while he bolused for the high before bed he neglected to take insulin to cover the tangerines.

Sigh……

Whack A Mole

When my kids were younger I would take them to Chuck E Cheese often. We lived in Texas and the summers were hot so the days we didn’t hang by the pool we would hang out with the mouse. Yes it was a petri dish of germs. No I didn’t take hand sanitizer, might not have even required the kids to wash hands before eating. A favorite game was always Whack A Mole. All three of my kids loved whacking the mechanical moles and often we would race since there were two games right next to each other. There was something therapeutic about whacking those plastic heads repeatedly always trying to beat the game.

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It is no longer therapeutic. The moles are no longer cute plastic rodents with hard hats and a grin.

The moles are highs and lows, the game never ends and I don’t get any tickets to trade in for trinkets.

Also I am now playing three games at once. Are you imagining me dashing between three arcade machines with a mallet whacking heads? Oh and the mallet – it is always attached to a single machine with a short cord so often I forget which mallet I’m holding and find myself flat on my ass because I tried whacking a mole with the wrong mallet. (giggling yet? It’s ok – I find humor in it too because if I didn’t I’d need to be drunk off the cheap beer)

My kids are 15, 13, and 11. Hormones, puberty, outside play, missed boluses, sports participation, lazy day electronics, lack of any meal schedule, late nights, endless snacking, and more make the whack a blood sugar game all that more difficult.

Yesterday on a FB page for parents of kids with diabetes another mom was waging war on a stubborn high with her 14-year-old son. Multiple highs and multiple corrections with different insulin (MDI) and she and her son likely felt they were using a 19th century flintlock pistol to lay siege on an enemy using 21st century armor. At least that is how I felt between 10pm and now at 6:30am. In the FB feed when she first posted her concerns of repeated highs despite corrections I, like others, had said if it’s a pump it may be a bad site. If it is MDI it may be bad insulin. Any chance the child was sneaking food? This exchange took place long before my 13-year-old returned home from a babysitting gig and learned of his 432.

Of course he isn’t currently wearing his Dexcom so he didn’t realize. He had checked his blood sugar at 7pm and was in the upper 200s. He and the boys he was watching ate pizza (yes part of the issue I’m sure) and he bolused and corrected. I called him a bit before 9 and asked him how he was. He checked BS and was in the 400s. He corrected.  He returned home a bit after 10 and checked, still in the 400s. He corrected again with his pump thinking it was pizza related and went off to bed, well he is a 13-year-old boy and it was a Saturday during the summer so he corrected and went off to veg in front of his Xbox. A bit after 11 I was going to bed and asked him to check again, 512. What? New pump site, new insulin, correction, kisses good night, alarm set for 1am for me. 1am – 355 not a big drop for 2 hours. Another correction. 3am 279. 6:30am 224. Stubborn ass high for sure. A losing battle of Whack A Mole or laying siege to a heavily armored enemy with a flintlock. Either way I am left feeling defeated.

Every person and child with diabetes reacts differently to insulin – oh and there are different brands of insulin that work better in some than others. Teens have raging hormones that seem to taunt the best offensive line of diabetes management.

I think I may have strayed from my original intention of this post which was to describe what it is like trying to help 3 kids of different ages and genders manage diabetes. Different games of Whack A mole – trying to use the same mallet on all three games, etc. It is true – corrections like the ones my middle son completed would have likely corrected my youngest son with little difficulty – less hormones. The corrections would have also corrected my daughter easily on most days. Why is correcting highs in my 13-year-old son more difficult? Perhaps his pump settings such as his correction factor (how much insulin he gets to correct out of range blood sugars) needs adjusting – although we had increased the ratios just a few weeks ago.

I’m not sure this post has any redeeming qualities. I think I was mostly venting. But if you ever feel like you are playing an endless game of Whack A Mole perhaps you will find solace in knowing it is a game we all play at times and if you are a parent of a teen and the game is getting harder, it is normal. I hope you won’t make the same mistakes I have made and accuse your teen of sneaking snacks (although mine really does often sneak snacks but nearly always boluses for them). I have found the less I trust my teen to be doing the right things (how do we define the right things in a teen that wants to be normal?) the more difficult it becomes to help him manage his diabetes. When he is high and I try to help discover why he immediately goes on the defensive. That isn’t helpful to either of us. I have never punished my kids for high blood sugars and I’ve never rewarded them for in-range numbers. I commend them for checking and bolusing but that is about it. Still the temptation, especially towards my middle child, for me to say “what did you eat?” is a strong one. I have said it many times and accusing him (whether I was correct in my assumption or not) has built a wall of defense. I don’t need an additional wall of defense to negotiate while trying to battle the actual blood sugar.

Sigh. 3 kids with diabetes, two teens and one right on their heels.

Thank goodness for coffee, cookie dough ice-cream and the diabetes online community.

Random Encounters

It wasn’t the first time I met someone with a diabetes connection while in line to get a latte, probably won’t be the last.

Last weekend the daughter and I were in target. After checking out we stopped by the Starbucks located inside Target. (How ingenious is it to have Starbucks inside Target? If only movie theaters would follow suit.) While in line I placed a call to husband to ask him to have Sugarboy check his blood sugar because he had been in the 400s twice that day. The second time because he didn’t correct the first 400. I did not use the word diabetes.

I ended the call (funny how the phrase ‘hung up’ isn’t really in our vocab any more – curious if there are teens across the country saying ‘no you end. No you end. I’m not ending first, ok lets end together’)  <<(blame my ADD) and asked daughter if she wanted a beverage. Just then I made eye contact with another mom ahead of me. She smiled and simply said “type 1?”

We chatted for a few minutes while the sweet barista waited patiently to take my order. Sneaking a peak at the two children with her I asked if she also had a child with Type 1. She answered in the affirmative but her cwd wasn’t with her. Her cwd is a 14-year-old daughter and she shared that her daughter is currently having a ‘hard time of it’.

My daughter isn’t always excited to share with the general public that she has type 1 so before I made any mention of my daughters diabetes I stole a glance at her and she nodded her permission.

I told the other mom I had 3 with T1D. I waited the few seconds for that to process with the other mom. Often when I share ‘that’ with parents a couple of things happen – they sneak a peek at their non-T1D kids and their faces show a brief look of concern and I imagine they are thinking ‘what, how, why – really? could my other?’ I think it can be a scary thing to meet a family with multiples so I usually toss in a comment like ‘we are not the norm’ and watch as they relax a bit. I can’t recall if I added that tidbit during our brief encounter.

After sharing that I have 3 cwd I told the mom my daughter was also 14. Since my brain is mush lately – it being the last week of school – I can’t recall all we chatted about in our brief coffee line meeting. I do recall mentioning CGMs (Dexcome G4) and inviting my daughter to show off her TSlim pump which was greeted with the typical ‘oohh and ahhh’ (I mean lets face it Medtronic and Animas have nothing on TSlim when it comes to the initial WOW factor – it is sleek and sexy (I don’t use the word ‘sexy’ with my kids but if ever an insulin pump could be sexy the TSlim is) it is also very easy to use and IMHO a fabulous choice for teens and adults – my boys are still rock’n their Animas Pings and I do love them (the pumps and my boys of course) too) – how many parenthesis are in that run on sentence?

I also asked if the her child would be attending a sleep away diabetes camp this summer. She will be, the same week as my daughter. I saw the corner of my daughter’s mouth curl with a smile. My daughter isn’t nearly as excited about meeting other T1Ds or T1D families in the wild. She is happy to spot them, like some diabetes game of eye-spy but rarely wants to approach them. She tolerates my enthusiasm to a point. She was a good sport this day.

I gave my contact information to the other mom and wished her well.

Meanwhile a meet-up of families with kids attending various weeks of diabetes camp was coming together via a private Facebook group for the area. Thinking of the sweet family Sweetstuff and I had met I sent an email to the sleep away camp. I had nothing but the child’s name and HS she would be attending. The mom had introduced herself but alas my brain….

My contact at the camp was able to locate the family and shared the meet-up info with the family. I wasn’t trying to be weird or come off as stalking the other family, I just wanted to invite them to the meet-up. Thankfully when the mom emailed me she assured me she didn’t think it weird. Unfortunately they are out of town the day of the meet-up but we hope to get the girls together before camp.

My point to this post – I don’t really have one. I just thought it was fun to share.

well I guess I have a couple of points:

First – always be sure your kiddo is ok with you sharing diabetes stuffs – even if when they were younger they didn’t mind and actually participated in sharing – the silly thing about kids is they grow and they become these separate little people with their own thoughts and preferences. I am very cautious about what I share regarding my daughter now and almost always get her permission first – whether it be here on the blog, in a line at target or on other social media. There are many things I wish I could share because maybe something I share would help someone but the thing is this isn’t all my story it’s hers and she needs to own it. I guess that’s a bit off topic from a random diabetes encounter but since I had mentioned that she doesn’t always want to share I thought Id explain further.

Second – well there isn’t really a second but since I started with ‘first’ I think proper grammar/writing rules says there has to be a ‘second’ something like in an outline you need a ‘B’ if you have an ‘A’. I’m not always great with grammar which is why its unlikely I’ll ever write a book.

I do love random diabetes encounters.

The membership to our club is costly but I must say the members are priceless.

oh F***

I’m torn. Really seriously torn. I want to give these kids kudos. I want to congratulate them and wish them luck at the Grammies. I want to thank them for raising awareness about the dangers of sugars and how eating unhealthy can/will lead to obesity and other health issues.

The thing is – I can’t. I can’t congratulate them, wish them luck or thank them because of one of the last text slides after their video.

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No indication as to what form of Diabetes the creators are targeting.

Hear is the info shared beneath the video on YouTube – (which you can only see if you expand the text by clicking “Show More”) HERE is the link to the video.

“In PUSHIN’ WEIGHT, directed by Jamie DeWolf, Simone Bridges makes the metaphorical connection between the Food Industry, High Sugar foods and the pushing of drugs on our streets. Youth Speaks and UCSF Center for Vulnerable Populations are leading the campaign against Type 2 Diabetes with our new project, The Bigger Picture. Raise your voice TODAY!”

The “Type 2 Diabetes” is not in bold in the text under the video – I altered the quote to raise a point. This is the only place the phrase “Type 2 Diabetes” is used.

I won’t even go into how wrong I think it is overall to be suggesting that Type 2 Diabetes is caused simply by unhealthy eating. There are other reasons Type 2 Diabetes happens too.

But I am a parent of 3 children with Type 1 Diabetes. My kids did not get diabetes because I pumped them full of sugar, corn syrup, bacon and fat. I fight often to educate people about how Type 1 Diabetes happens and first and foremost how it has nothing to do with what I fed my kids or what I ate while pregnant.

I am proud of these kids. I’m glad they created a PSA video. I just wish they didn’t include “Diabetes” in their slides or if they really felt it necessary – they could have listed Type 2 Diabetes as one of many health problems that can be caused by poor food choices.

How did I come to find this *gem of a video. An email I received from “The Daily Good”. I get daily emails from “Good” and most are worth the read/watch. I was excited at first when I saw the subject line of today’s email.

“Watch This Diabetes PSA – Could Probably Win a Rap Grammy” 

Here is the text from the email I received which included a link to the video I shared above.

“Highlighting how today’s sugar consumption is similar to drug addiction, Youth Speaks and UCSF Center for Vulnerable Populations have teamed up with high schoolers to raise important questions about healthy food access with provocative PSAs about diabetes. Their campaign, The Bigger Picture, gives youth opportunities to not only show-off their creative skills, but also win educational scholarships.”

Click HERE to learn more about The Daily Good. Most the stuff I receive is *Good, today’s was an exception not a norm.

I do hope these kids receive educational scholarships. Their video is quite good. But still – it didn’t need to focus on diabetes – any kind. And honestly – for shame UCSF for not recognizing how this video could have a negative impact on how hard those of us in the Type 1 community (and all of the DOC) work to educate others.

I find it ironic that this is my first post of 2014 and follows behind my daughters guest post about the boy in her class that suggested he would get diabetes from eating too much sugar.

Happy friggen New Year.

 

Screw Schrodinger

I am not a scientist. I vaguely remembered the lessons of Schrödinger’s Cat in regards to thought process and even less in regards to Quantum Mechanics when I was briefly introduced to it in some philosophy class in college. I was only reminded of it while watching an episode of “The Big Bang Theory” (funny ass show btw if you haven’t watched. The bit about the cat is at 2:44 min)

Ok so here is where this is going – I’m sure the suspense is killing you.

Feb 2007 – Sugarboy was diagnosed with Type 1 – this was completely unexpected – the kind ‘of shit’ that blindsides you at 4pm on some idle Tuesday (from Baz Luhrmann’s Everybody’s Free to Wear Sunscreen)only it was a Wednesday morning – and everyone should most certainly wear sunscreen. Oh here is a link to Baz’s song because its awesome.

July 2007 – Sweetstuff was tested for antibodies at FFL via TrialNet – two months later we got results that said she was positive for 3 out of 4 antibodies. We didn’t pursue further testing because – well because we were scared as shit and didn’t want to put the fear on her and surely lightning wouldn’t strike twice – right? WRONG – keep reading. (I should also note that my Middles was only 5 at the time and chose not to get a huge needle stuck in his arm to be tested. We respected that. Chad and I were both tested and are negative for antibodies.)

April 2009 – Sweetstuff was diagnosed with Type 1 diabetes. Screw you diabetes.

October 2011 – While participating in a JDRF Walk to Cure Diabetes, Middles agreed to be tested for the antibodies. (I can’t recall what his daddy promised him but I can assure you he was bribed.) Up until this point the cat was both alive and dead (and this line makes no sense to you if you don’t know about Schrödinger’s cat – go back and click the Wiki link or Big Bang link). We hadn’t opened the box. Although in truth the cat was either dead or alive before the box was ever opened and not really both alive and dead. I can tell this is gonna get convoluted – stay with me.

Feb 2012 – While at a routine endo visit with Sweetstuff and Sugarboy I was told that Middles test results from TrialNet had come in. He was positive for all antibodies. Frick Frack Fruck.

Basically – we opened the box by having Middles tested. The tests showed my Middles was at high risk for developing Type 1 diabetes. That risk was there whether we knew about it or not.

What did knowing do for us? Well it allowed us to continue having Middles observed. He agreed to a blood draws and Glucose Tolerance Tests every 6 months while we considered additional studies. It also meant putting another cat in a box each time. It also meant (just realized I started two sentences with that phrase – should probably fix that but – whatever) I was in a constant state of worry. I don’t know if I’ve ever told y’all but I do have some anxiety issues. Not the kind that lead me to believe aliens will abduct me (although now I’m thinking about that) but that shit that can go wrong will go wrong. It is an illness that I should probably talk about more because I know I’m not alone. Moving on….

On Tuesday June 22nd, a week after his last GTT and blood work I got THE call. The call that told me he failed the GTT.

fasting blood sugar: 110

1 hour mark of GTT: 239

1.5 hour mark of GTT: 212

2 hour mark of GTT: 207

A1C (don’t let this fool you): 4%

Anything greater than 199 at the two-hour mark is diabetes.

How does he have an A1C of 4% you ask? Because his pancreas is in such disregulation that it doesn’t know what the fuck it’s doing. At times I would randomly check his sugars he would be in the 60s. Other times in the upper 100’s. An A1C is an average blood sugar over about a 3 month period. Enough numbers in the 60s averaged with numbers in the upper 100’s or lower 200s will give a very pretty 4% (roughly over 6% is diabetes). A1C doesn’t mean much other than the pancreas is wonky. (can I use wonky and fuck at the same time to describe his pancreas? – its like Elmo meets Andrew Dice Clay)

So Im a little messed up right now. Im not at my best – in fact I am at my very worst.

Middles will go in for another GTT to confirm – just in case something went screwy with the test. Since we were away in TX I haven’t contacted the other kids Endo yet. I was planing on switching before we left (she – their Endo – isn’t playing nicely regarding getting back on Novalog). I will call her office tomorrow and get her thoughts. Chad is in denial and man or man do I hope he is right. It’s all some big goof up in the lab. I do not want to be 3 for 3 in this game. It isn’t like baseball with 3 up 3 down with my team on top. It’s the opposite.

 

bb2

this is not my picture. I don’t know whose it is. It is a Meme. Im not sure of the rules regarding memes. If this is your picture please don’t sue me – Im already having a bad day.

PS. My friend over at thePerfectD has been writing a post that may or may not include a reference to Schrodinger and his feline friend that may or may not be dead. I haven’t seen her post it yet. We knew we were both writing or not writing a post regarding dead and alive cats. I started a similar post to this one only I didn’t have any results. I was gonna wait for my friend to post first. But since my kid might be number 3 for me I got dibs. Still you should look daily for her post because it will likely be much better than mine and far less convoluted.

Posters Save Lives

A day behind with Day 5 of Health Activists Writers Month Challenge.

(In my defense I did post yesterday and yesterday’s post was viewed more than any other post I’ve ever written – it just wasn’t my Day 5 post – Thank you to all who viewed the post and shared your thoughts – your support means so very much.)

Day 5 Challenge: “If I could do anything as a Health Activist…” Think big today! Money/time/physical limitations are no longer an issue. What is your biggest goal that is now possible? And/Or What’s your one, three, or five-year plan for your Health Activism?

If money and time were not issues I would work towards educating the world about Type 1 Diabetes. I would use either existing posters (International Diabetes Foundation has created one) and/or create new posters, flyers, videos about the early symptoms of Type 1 diabetes to distribute to all doctors offices (pediatric & general health care providers), school health offices and hospitals. I mean truck loads of them and I would hire folks to hang the posters so they didn’t sit rolled up in some back office where advertisements for over priced meds go).

The posters would include illustrations of children and adults doing the things that many parents and patients miss (or explain away) prior to diagnosis or after it is too late to save the child/person.

  • excessive thirst
  • excessive urination
  • excessive hunger
  • excessive sleepiness
  • headaches
  • leg aches
  • rapid heart rate
  • mood swings
  • weight loss

The posters will also identify myths about Type 1

  • isn’t caused by too much sugar
  • there is no cure
  • one cannot grow out of it
  • well-managed diabetes is the cause of absolutely nothing (Dr. William Polonsky)
  • complications can happen and will happen with poorly managed diabetes
  • a person with type 1 diabetes is always insulin dependent
  • a person with T1 has to check blood sugar at least 4 times a day – yes it hurts
  • a parent of a child with type 1 diabetes did not cause it to happen
  • a person with T1 can do everything everyone else can do

The posters will also encourage newly diagnosed to seek support within their community and online. There is no reason (unless by choice) a pwd or parent of cwd should ever be left to feel alone.

While distributing the posters I would offer short classes to all health care providers about Type 1 diabetes. That seems weird right – I mean they are way more educated than I am – in a way that one would think they should know (medical school). Still I’ve heard of many health professionals missing the diagnoses Type 1 diabetes. I’d also educate school staff – I mean come on teachers spend more time with their students than parents spend with them during the school year. I mean actual clock hours not the quality of time.

I would ask that the posters hang in every exam room, hospital elevator, and school health office. I mean come on, how many times do we read the posters in those rooms while we wait for our HCPs? Visit after visit we read the same posters. The knowledge will sink in. Most people who read the posters will never need the information. BUT – the message will reach those that one day (some random Wednesday) will need it. Maybe it will reach the friend of a teen that has been showing the symptoms and the friend will mention it to their friend. Maybe it will reach the teacher who has a student that’s always leaving the classroom to use the bathroom. Maybe it will reach a grandmother who is keeping her grandchildren for the weekend. Maybe It will save lives.

When I lived in Texas I volunteered with the Austin JDRF (Juvenile Diabetes Research Foundation). I would visit elementary schools with a large cardboard picture of the Pink Panther and boxes of fundraising envelopes. I would meet with every grade level for about 45 minutes during their PE classes. During the presentation I would talk about what the JDRF is, what diabetes is, what types there are and what causes the different types, how the kids can stay healthy by eating right and exercising, how type 1 is not caused by poor choices, why pwd need insulin, how insulin is used in the body, what happens to a pwd if they don’t take insulin and that there is no cure. The last few minutes I would invite the kids to ask 10 people for a $1 to help fund a cure.

This was a very interactive presentation. I asked the kids questions, allowed them to give examples, maybe tell short stories, I had them get up and move around. If there was a child(ren) with diabetes in the school I would invite them to talk about it (I met with the child ahead of time so if they did not want to talk I did not single them out).

I believe I reached these kids. In fact I know I did because parents would tell me how much their child shared with them when they got home.

I haven’t been able to get that involved yet here in CA. I’m still unpacking my life. I hope to get the program moving in my area next school year.

Which brings me to my 1 year, 3 year, 5 year plans.

1 year – bring the JDRF kids walk program to the East Bay area of San Francisco

3 year – be invited to speak at conferences to adults and/or children about diabetes awareness, diabetes in school, diabetes and siblings, diabetes and peer pressure, diabetes and depression (in regards to parents of kids with diabetes). Any and all of these topics are ones that I am working on a plan for.

5 year – write a book – this is the scariest of all for me to think about (yes way more scary than talking in front of huge crowds – that’s easy for me). So many books have been written. Really wonderful, informative, funny, heart-warming books about all things diabetes. What on Earth would I have to share that hasn’t been shared already?

So basically give me money and time and I will make a poster – a priceless poster that can/has/will save lives.

 

Diabetes In A Cup

First, let me apologize for not having blogged in some time. 2013 started off crazy busy, then there was the flu that took down my boys and me, followed by a week of catch up with life, followed by a great visit with friends from TX that included sneaker waves, boobie cars, and stupid dune yard people. I wish I could explain all of the shenanigans but some stuff is better left unexplained.

So what prompted a great need to blog today a week ago? Ignorance and Youth. (yes I started this a week ago – someone please stop the merry-go-round – I’m getting dizzy)

My dear daughter has guitar lessons each Thursday evening. Unfortunately those lessons take place during the same hour that DSMA hosts DSMA Live a Blog Talk Radio show with amazing guests and hosts. Sorry I digress – although you should totally check out the show which is on Thursdays at 8pm central time. You can find links on the DSMA webpage.

Ok so each Thursday while my daughter is in her lesson I step next door to the coffee shop (you know the one). Nearly every Thursday the same baristas are working. The manager has learned my name as well as  my favorite drink and she greets me kindly while pulling a venti cup for me while the younger gal rings up my order. Both are very friendly and my drink is always spot on delicious.

The young one – (oh to be young and have only 2 decades of footprints on the earth) is sweet and always smiling but alas she has no filter between her brain and her mouth. I’ve witnessed her naivety and her immaturity numerous times with regards to sharing too much personal information about her boyfriend and how painful her nose piercing was.

Her willingness to share a bit more than most, and her lack of awareness of the people (guests) around her never bothered me. I shrugged it off – she is young.

Until – last night while fixing up a number of blended mocha caramel frappa type drinks she refered to them as “diabetes in a cup”. She wasn’t talking to me but when I hear diabetes my ears perk up since it is a language I speak. I was reading an email while I waited for another employee to grind my coffee.  She was talking to the other employee. That employee didn’t hear her (or chose to ignore her) because she said it again – “Yup, Diabetes in a cup”. Of course at the second mention of it I inquired as to what she was referring. She explained she was making drinks for her boyfriend and his mom since it was the end of her shift and they requested she bring them drinks. She explained the ingredients and again said – “so its diabetes in a cup”. (Im not sure the coffee company would be excited about her renaming items on the menu.)

diabetesinacupphoto

HUH???

At this I said, “I have two kids with diabetes.”

Of course she stopped in her tracks and looked at me like a 2-year-old caught reaching into a candy jar. Then she opened and closed her mouth a couple of times, clearly unsure of what to say before she finally said “oh I’m sorry”.

I told her they have Type 1 diabetes which isn’t caused by eating too much sugar. Which she replied with, “so they were born with it.”

I explained – No, not born with it. They developed it years later at different ages. They didn’t get it from eating the wrong things though. It’s an autoimmune disease. They didn’t do anything wrong to get it and I assure you I wasn’t giving my 2-year-old mocha caramel frappas. There are different types of diabetes but you should also know that some people get Type 2 diabetes without being overweight or eating poorly.

Of course then she told me her grandpa has diabetes.

Ok – out of curiosity I asked “Which kind?”

She didn’t know. I then asked if her grandpa uses insulin.

She said, “Oh no, it’s not that bad.” (Yes I cringed)

Thus I said, “ok well if he doesn’t use insulin which is a medicine that allows people with type 1 and many with type 2 to stay alive than I would guess he has Type 2”

Her response – “I don’t think so, he’s not fat.”

(Didn’t I already cover the fact that a person doesn’t have to be overweight to have diabetes – was she not listening – I’m educating her – she should listen)

During our conversation she was kind, polite, respectful. She apologized numerous times. Although at this point she was glancing at the now melting frappas sitting in the drink holder waiting to be taken to others. I wanted to let her off the hook but needed her to understand her words affect others.

I told her (after her 5th apology) – “I’m not mad. I know you didn’t mean anything by what you said. But I hope you will consider what you say in the future. For all you know someone else overhearing your remarks could have diabetes or love someone with diabetes.”

At this point she thanked me. Im not sure exactly what for. Perhaps for not tattling to her manager. Perhaps for educating her. Perhaps for imparting a real world lesson about filtering ones thoughts before allowing them to escape via the mouth. Perhaps for just letting her off the hook and allowing her to leave.

I hope she heard listened to something of what I said. She is young and has so much to learn about – well everything. She is also kind and meant no harm and while I was angry about it initially I understand why she said what she said. The general public – (which until Feb 7th of 2007 included me) isn’t educated enough about diabetes. Commercials, adds, even crack pots like Dr. Oz don’t share facts effectively.

More education is needed about diabetes. Pediatric doctors and school health offices need posters hanging in the exam rooms that share the symptoms of Type 1 (this would save lives), primary care physicians need to provide nutritional counseling to adult patients (not after a person is found to be at risk but before) and Hollywood needs to learn about diabetes before including it in TV shows, reality shows, and movies. IMHO.

 

Best Betes Blogs

What is the end result of a fabulous Diabetes meet-up aside from love and laughter?

A suggestion, nay request that I host the Best Betes Blogs for November. What could I say after Sara brought me a bottle of sand and shells from Florida. I didn’t realize what a fabulous honor and treat it would be to host. Imagine how thrilled I was to receive over two pages of nominated blogs. For an undisclosed amount of time (wouldn’t want ya thinking hosting takes up too much of your time) I laughed, cried and had to fight off feelings that I’m certain even Dr. Bruce Banner would have succumbed to.

Enough of my rambling – on to the winners of the November Best Betes Blogs

Best Use of Humor

If diabetes had an address I’d like to send some hate mail. Life: One unit at a time

Best Vlog

I’ve always believed that PWD and those who love PWD are the bravest, smartest, funniest and most awesome people – clearly PWD also make great poets. Dorkabetic

Best Recipe

YUM! You had me at “The summer of tomatoes” A Girls Reflections 

Best Use of Photography

Nothing brings me more joy than seeing a family coming together to support one another while building diabetes awareness. The We Cara Lot Blog

Best Advocacy

I’m not sure who said it but someone once said that more people fear public speaking than death. This little man with the support of his mom wasn’t afraid. Type 1 diabetes 365 and here (to watch the presentation) Kuddos Craig!

Best Story of a D Meet-up

Social Media brings people who may have previously felt isolated together – and not only to sing 80’s music together – although I personally believe singing 80’s music together is reason enough. Simon at Simon From the 70’s

Best non-D Related Post

In the Diabetes Online Community we come together to celebrate diabetes success, learn new diabetes management tricks, and share diabetes frustrations – BUT if I’ve learned anything it isn’t always about diabetes support – it is just about support. George at Ninjabetic 

Best Post by a Type 1

Not to scare off any potential BBB hosts but this category was truly difficult to pick a winner. If it were allowed there would be at least a four-way tie. Alas – I was given permission for a two-way tie. I must have read each of the posts submitted a half-dozen times – yes it was that hard to choose.

The questions we all get asked and the decisions regarding how much to share. Nikki at Celiabetes 

Diabetes fights like a jealous sibling or pet when baby comes home. Jacquie at Typical Type 1

Best Post by a Type 2

This post surprised me. As a parent of two kids with Type 1 I always feel people with Type 2 get all the attention via mainstream media. To an individual everything is perception but perception isn’t everything – look closer. That’s what I learned from this post. Sue at RFamHere’s Ramblings

Best Post by a Type Awesome

Courage – she’s got it. Insulin Resilience

Best Post by a LADA/Type 1.5/Not otherwise specified

I’m NOT trying to plug my blog here I just feel the need to say – Stick with it sugar, it never gets easier – you get better. Katie at 1 Little Prick

Best story of a D-mistake

When I got to this category I must say I wasn’t feeling a lot of love for a certain someone. Asking me to choose a winner with so many great nominations was asking a bit much. Thus again I narrowed it down to two and considered flipping a coin but luck isn’t what makes these bloggers so fabulous – it is the ability to act in the presence of fear, recognize that we learn from our mistakes, and to take each day with a spoon full of sugar  – or a whole lot of fast acting carbs when needed.

Lea at Luvleamum

Bram at Trained by Insulin

Best Motivational Post

When reading this post I was thinking about the courage post listed above and my favorite quote about courage – “Courage is not the absence of fear but the ability to act in the presence of fear” Mikes guest post on Diabetes Mine

Best Diabetes Art

Don’t eat Dr. Banting! Wendy at Candy Hearts

Congratulations to all of November’s Best Betes Blogs Winners. Please grab this button to use on your blog if you would like.

Thank you to all those who nominated posts this month and congratulations to those who were nominated.

George Ninjabetic

Scully Can.D.Gal

Kim Texting My Pancreas

Karen Bitter Sweet

Denise My Sweet Bean and her Pod

Brian Buzz Buzz Not My Cell

Scott B Diabetes Daily

Kelly Diabetesaliciousness

YDMV 

Jess Me and D

D-meanderings

Christina Stick With It Sugar

Meri Our Diabetic Life 

Rachel Probably Rachel

Emma Big Purple Duck

C’s Life with D

Kerri Six Until Me

Kate Sweet Success

T Minus Two

Carey dLife

Alexis I Run On Insulin

Victoria Cumbow

Food Food Body Body

Ryan The Diabetic Cyclist

Stephen S Happy-Medium

Rachel Tales of Rachel

Mike Diabetes Mine

Scott E Rolling in The D

Laura Four Days to Two D

Sarah M. La Osita’s Weblog

Sara Moments of Wonderful

Jasmine Silver-Lined