Friendly Fire

My Middles is 11. He plays video games. In fact if left to himself he would play video games for 12-14 hours – emerging from his room only occasionally to get sustenance. He would do that very stealthy so I wouldn’t see him and remind him to put away clothes, pick up a room, or go outside to play. I’m ashamed to admit there have been days that is a true story. My day gets hectic and I “forgot” him. He is an easy kid. Never demanding and always considerate of others. But he knows that if I see him I’m going to “suggest” he turn off the games, do some chores, and play outside. It’s hard for me to make him turn off the games. He plays Xbox Live with his friends back in TX. I hate pulling him away from the friends he misses so terribly. – ok this post is not really about my sons video game addiction. I only mentioned that he plays video games so you would understand why I explained diabetes to him the way I did. Clearly I have some parenting issues regarding video games I need to work on. (I ramble for the next little bit – feel free to skip my rambling and move on to the conversation I share at the end.)

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I’m gonna try to avoid discussing my parenting issues again when I tell you that one of his favorite games to play live is ‘Call of Duty – Black Ops’. I’m sure gamers out there would agree that it is one of the best video games ever made. I personally think Mario Bros games are the best games ever made – those and Mr. Do – I loved Mr. Do. Digressing. Sorry.

My son understands military/war type stuff because of his games and some movies including ‘Saving Private Ryan’. He understands (much to my embarrassment) snipers, strike first missions, invasions, whatever. Basically he gets that there are soldiers protecting people and areas and other soldiers trying to invade, capture, kill in that area.

My Middles has lived with diabetes for over 6 years. He ‘doesn’t’ have diabetes his siblings do. He knows all of what is required to care for oneself with diabetes. What he didn’t know or understand was what having diabetes really meant in regards to his own body. I wrote a post a few days ago regarding a really ticked off cat. In it I shared that my Middles failed his last Glucose Tolerance Test. He will be retested soon. Still I couldn’t ignore the results and pretend that we may not yet again be hit with the diabetes stick.

When I got the news about his test failure I was upset. He saw me upset. I tried to play it down. Say that I was tired. Told him not to worry. He still worried. Later that day at the hotel he wouldn’t stop asking for food and since we were staying at a hotel with friends he was asking for their food too. He wasn’t asking for dinner. He wanted snacks and sweets. I kept telling him no. All week Tuesday night – Friday morning, I just kept telling him no sweets. Nothing that I would use to treat a low blood sugar. Friday I was driving him to his friend’s house where he would stay for 24 hours without me. I told him no candy, juice, or anything that says “fruit” but has to be unwrapped (fruit roll-ups, fruit snacks, fruit by the foot – what is all this crap – it certainly isn’t fruit).

Now let me just say – a person with type 1 diabetes can eat anything a person without diabetes can eat. It doesn’t mean they should – in fact the people without diabetes shouldn’t be eating it anyway. IMHO (This does not include Reese’s Peanut Butter Cups – those everyone should eat and if you don’t like them you should send them to  me).

Also let me say – eating things with sugar will not, does not, and never has – caused Type 1 diabetes. However – eating those things does make a persons pancreas work harder in both those with diabetes and those without. For a person whose pancreas is acting wonky eating things with lots of processed sugars is just like daring the pancreas to say ‘screw you’. IMHO

Getting back to shooting people.

So on our way to his friend’s house my son asked why he couldn’t have a V8 Splash or fruit snacks anymore (not that he had those things regularly but he did enjoy them while at this friends house in the past). Of course this promptly triggered the tear ducks in my eyes to begin operation ‘can’t hide anything from him’.

I explained about the test results and what it might mean. I explained he might be developing diabetes. (BTW – this is not the first time he heard news that he could develop diabetes – he knows perfectly why he has been participating in the TrialNet studies and getting the GTT tests) I told him he may have to start taking an insulin shot each day to give his pancreas a break. I was sure to use “might” and “may” often. I mean I MAY not be right. I explained how juice, candy and fruit type snacks that aren’t actually fruit at all – could stress out his pancreas.

This is our conversation – I’m sure a number of you are saying “I should have just gone to the conversation”.

Middles: I know we need insulin to stay alive. I know that when you have diabetes your pancreas doesn’t make insulin, but why?

Me: The immune system destroys all the insulin producing cells in the pancreas.

Middles: Blank Stare

Me: You have an immune system that works to keep you healthy. It attacks things that can make you sick.

Middles: How?

Me: Think of your immune system as a first line of defense. Little soldiers patrolling your body looking for enemy invaders.

Middles: Ok  (his ok was said with great enthusiasm – clearly too much video game time)

Me: So when you get a virus, like the flu, the immune system soldiers seek out the virus and destroy it.

Middles: So why do they destroy the cells that make insulin?

Me: Well I think its like friendly fire. I think a virus or something that shouldn’t be hanging out with the cells that make insulin are, so the immune system thinks the insulin cells are also the enemy. This is just an idea. A possible reason. If scientists knew exactly why then they could stop it. Lots of people are working hard to stop it.

Middles: Oh, that makes sense.

Me: Are you ok?

Middles: Yea, I’m good. Can I still have strawberry shortcake if ****’s mom makes it again? I’m sorry but it was better than yours.

Me: Yes baby. You can have it.

Middles: Awesome. I hope she makes it. We almost there?

My Middles is gonna be fine. Regardless of results of his re-test or what the future might hold. Our family will be fine. Scientists, researchers, doctors, people in the DOC – they are all working to figure it all out. Maybe a cure wont be here in 5 years, 10 years, but it will come. My Middles told me it would. He said he would be part of it. I love my kid.

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.

Smarter, Braver, Stronger

Day 12 Health Activist Writers Month Challenge (yes 4 days late – I think I have established how delinquent I am but like I’ve said before – I prefer to see the daily prompts like the Pirates Code – really more like guidelines.)

Day 12 Challenge: Hindsight – If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say? And/Or What have you learned about being a patient/caregiver that has surprised you most? This prompt was suggested by yours truly so I am feeling even more guilty about being so late. 

Thinking back to both of my kids diagnosis’ I would like to think that I said exactly what needed to be said to them at the time of their diagnosis. If I could go back and bring a message from the future I believe it would be something like “Listen to all I’m saying because I’m right – although you are even stronger, smarter and braver than I had imagined and you never cease to amaze me.”

winnie-the-pooh

Now that I’ve written that sentence – well I think that’s the same thing I’d tell myself too. I would also tell myself to find twitter then – sadly I spent nearly 5 years feeling very alone. Then again – maybe all that time alone is what made me stronger. Playing with the future is such tricky business but I can’t imagine meeting all my DOC (Diabetes Online Community) friends earlier would in any way have a negative impact on my life or the lives of my kids. In the last year the DOC has only added a priceless value to our lives.

What have I learned about being a caregiver that has surprised me the most? I could try to give a humble answer and say that I didn’t know I could do it but that would be lie.

I have never doubted my ability to care for my kids. I sometimes worry that I make mistakes or could do things better but not that I couldn’t do it at all. I knew I would be strong enough – I’m ex-Airforce (stop laughing we can be tough – it isn’t always about the Navy Seals and BlackOps) – I excelled in basic training (ok I didn’t make it over the 10 foot wall but I kept trying until the TI waved me around it), I received many awards while in the Air Force and was promoted early. I have earned 3 college degrees and given birth to 3 kids (ok 2 were C-sections but 2 days after the first C-section I was home vacuuming and after the second C-section I was home packing my house because we were moving out in 3 weeks – btw – I got the house prepared for the market while 9 months pregnant). I am a strong person and while I have a completely irrational fear of flying and somewhat rational fears of tornados and Earthquakes – very little else scares me.

I guess what I learned most is that I don’t know everything. (Oh that hurts to say out-loud) I’ve also learned that admitting to others that I don’t always know the answers is difficult but an important lesson for my kids. Also, I’ve learned that asking for help isn’t the same as admitting defeat.

Another tidbit of advice I’d give myself and my husband at the time of diagnosis of our first cwd is that we BOTH have to be involved. I’m not gonna start whining about how I do everything and my counterpart does nothing because that would be an exaggeration.

Chad will do anything I ask him to do for the kids diabetes (again – see how I would tell myself that asking for help is not the same as admitting defeat). I have given Chad a free pass for over 6 years. I have been the primary care provider for both my kids since diagnosis. This has caused some resentment, fear and anxiety. I have at times resented him for not volunteering more frequently to do the night-time checks (I rarely allow it – one because I’m a super control freak but also because he has to get up and go make the donuts). I have also resented that I’m always having to remind him to remind the kids to check blood sugars, dose for food, take their diabetes bags with them when they leave home, etc. For me all of this is second nature – it’s all hard-wired into me. He doesn’t deal with the kids all day everyday like I do so for him they are extra things that I normally take care of and rarely involve him with.

The fear/anxiety comes into play when I have to be away overnight or when he will take the kids away overnight. Will he know what to do if sugars are xyz with xyz insulin active???? Will he know how much 1 unit of active insulin will reduce their blood sugars??? Fear also comes into play with my kids – sadly they don’t always trust their own dad to do what is needed. Just ask Sugarboy to let daddy change his infusion set – NOT GONNA HAPPEN. Want to see my daughter roll her eyes – let daddy try to talk to her about diabetes.

Thus – if I could go back to diagnosis day – I would tell myself to allow Chad to be involved – he wouldn’t refuse or complain. He never said he wouldn’t be involved – I’ve just never let him.

 

Don’t Mind My Voice

This year brought huge changes in my life – in my families lives. The biggest change for our family was a move across the country from Texas to California. For me the biggest change was becoming part of a larger community. Not a community connected by streets, courts, high school football games and the local Starbucks – a community connected by something much stronger – love, support, understanding, and a common goal – to end diabetes.

Don’t misunderstand me – the move from Texas to Cali was life changing. At times before and after the move I thought it would do me in. Luckily I have amazing kids who are resilient, a husband that devotes himself for providing what is best for all of us and again,  – a larger community of people in the DOC (diabetes online community) that helped me feel less alone.

This months DSMA Blog Carnival asks bloggers to write a 2012 in Review Post. click this link to learn more on how you can participate.

“Take a moment to reflect on diabetes in 2012 – on a personal level, on a community level, on a technological level, anything you can think of.  What things stand out to you the most?  What did 2012 and Diabetes mean to you?  You can even take the challenge one step further, and post a collage of your Year in Diabetes!” 

I have attempted to write this post a few times. It either got too wordy or didn’t share enough. Thus I thought I’d make a vlog. How difficult could that be? Well it was a lot more difficult than I anticipated. Technological difficulties using my photobooth application on my apple computer left me frustrated – it looked like a poorly dubbed kung-fu movie. After I finally got a video recorded and tried to load it was told it exceeded the maximum size for my blog. ARGGGG – here is where YouTube comes in.

Warning – I write like I talk and I talk like I think – thus I ramble.

Thanks for checking my first vlog out. HERE

It’s Not About Me

I am participating in the National Health Blog Post Month #NHBPM via Wego Health.

 Thankfully I get prompts (since I have not been able to pin down a coherent thought since July this is really good)

Today’s prompt – two choices:

“Why I write about my health” or “My favorite thing about social media/the internet/online communities”

Why do I write about my health. Well I don’t write about my health (although moments of my occasional depression or madness sneak in). I write about my kids health. I write about how Diabetes moved into our lives in Feb of 2007 and then two years later moved in further.

I have two kids with Type 1 Diabetes. I have three kids all together, four if you count my dear husband and how sometimes he is as difficult as the kids (shhh don’t tell him I said so).

Diabetes doesn’t only effect those who have diabetes. It affects us all. Our lives don’t revolve around diabetes except when they do. Diabetes wreaks havoc on my kids bodies and then extends to the all of us emotionally and physically. (Every wonder what repeated sleepless nights will do to your body? I don’t wonder I know and it ain’t pretty.)

So why write? I’ve never fancied myself an author, poet, philosopher. Yet I sometimes manage to share a post or two that speak to others. That’s great but it isn’t why I write. I write because after 5 years of battling diabetes alone my brain exploded. Ok not really, but last Januaryish I hit a real low. I felt so overwhelmed and needed somewhere to sort out all that conspired to consume me – emotionally, physically, socially. I had been occasionally reading other diabetes blogs – some very well-known – others more modest. It was hit or miss for me. If a diabetes Facebook friend shared a post I would almost always read it. While reading the post I would click on other blogs (bloggers with diabetes are great at sharing other diabetes blogs – love that!)

My mind was still so jumbled up. Too many thoughts and too few people who had the time or energy to hear yet another bad blood sugar story. Thus I decided to start a blog. I imagined it something like Dumbledore’s Pensieve – remove memories to clear the mind but keep them safely stored so I can recall them when needed – maybe share them with someone who could benefit from them. Alas – my blog was born. I write to share stories, experiences, occasionally a great piece of technology (although other big league blogs have better toys to talk about), ask questions, (dare I say it) – inspire others, and to meet others that are my brothers and sisters in the D world. I haven’t only met others in the Diabetes world – participating in Wego Health I have met a slew of folks with other chronic illnesses that humble me with their strength and determination to make the world stop and listen (some that do so with great humor – one of life’s best and most renewable resources.

Through writing and sharing I have met some of the most wonderful souls. Which brings me to the second prompt. My favorite thing about social media. My modest little blog might never make it to the show (had to make baseball reference – Giants won the World Series – wait I already made a baseball reference – well can you blame me I live 40 minutes from the Giant’s stadium.) However, it serves me well. I share – others read – comment – or even share my blog. In the process I learn from them, I make new friends, I don’t feel so overwhelmed and I haven’t felt alone since I joined twitter and the Diabetes Online Community.

So there we have it – Day 1 of 30. (Although I should get bonus points for covering both prompts.)

Now it’s your turn to share. Go to the link above for the National Health Blog Post Month and get your prompts.

PS – Yes I tagged Dumbledore – he is the greatest wizard and headmaster Hogwarts has ever known. (Yes I am a dork)

If I Had A Choice

Yesterday back in Texas (I miss Texas) a close and wonderful friend spoke to many about Autism. She has a son with autism and is his greatest advocate – actually she is an amazing advocate for all those with Autism. She shared a portion of her speech on Facebook. She ended her speech with a favorite quote of hers by Clara Claiborn Park,

“So, then: this experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson that no one studies willingly, the hard, slow lesson of Sophocles and Shakespeare – that one grows by suffering…. If today I were given the choice, to accept the experience with everything it entails, or to refuse the bitter largesse, I would have to stretch out my hands – because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.”

What precipitated this type of ending – this: (the last bit of her speech prior to the quote by Clara)

“Just recently, my youngest son asked me, “Mom, do you think Autism is good?” This is the second time that I have been asked this question by someone close to me. The other was a couple of years ago by my niece, who was exactly the same age my son is now. And I always catch my breath, like I’ve been kicked in the stomach. Tears well up in my eyes and I want to yell angrily, “I HATE AUTISM!!!” But, in the moment of searching for diplomatic words, I look at these children, and I see their kind, complimenting eyes. They are really looking at me with admiration – they only see LOVE. They see me lovingly dealing with my son, they see me excitedly talking to others about this terrible disorder and they see me taking on school issues with a passion, so to them, I LOVE AUTISM. Well, I love my son, and I guess it is possible, that may mean that I love Autism, but only because I can’t separate the two.”

Why am I sharing all this about Autism on my blog about Diabetes? Because Vicki (@vicki2cool) has an amazing way with words and an incredible understanding off how having a child with special needs (physical or cognitive) changes everything. I am inspired by her strength and dedication for advocacy. But there is another reason I share these particular words.

Shortly after Sweetstuff was diagnosed with Type 1 (which was 2 years after Sugarboy was dxd) she shared her hatred for Diabetes out loud at dinner.

Sugarboy’s reaction was heartbreaking. He screamed at her “Don’t you say diabetes sucks!”

See Sugarboy has only ever known diabetes. He doesn’t recall a life without diabetes. To him, diabetes was so much a part of who he was that when she said it “sucks” he took it very personal.

He turned to me expectant that I would yell at Sweetstuff, tell her to take it back, tell her she was wrong. I panicked. I didn’t know what to say. Diabetes does suck. But here sitting a foot away was my 5-year-old son so very conflicted. Surely he didn’t like diabetes? Moments passed – felt like time stopped and the walls were closing in on me – each of my three kids still staring at me – waiting. Waiting for what mom would say because they know (think) ‘mom is never wrong’. I seriously considered pretending the comments were never made and just yelling – “desert time – who wants brownies”?

It was likely just seconds that had passed. Sugarboy sat teary eyed picking at his rice. Sweetstuff, also teary eyed stared at me. Middles, likely wanting to get as far away from the Diabetes drama as he could asked to leave the table to use the restroom.

I swallowed hard and said something like (because this was 3 years ago and a day I don’t like remembering) “Diabetes is hard and hopefully is the worst thing that will happen to you in your lives and while it is a part of each of you it is not who you are. Some days diabetes will be harder than others. Some days you will hate diabetes more than anything else and other days it will just be what it is. Diabetes does ‘suck’ but it doesn’t mean that you ‘suck’ – you are stronger than diabetes – both of you.” I may have said more but I know I said these things even if not exactly as written.

No one seemed hungry after that. No one had done homework and I thought briefly about announcing a ‘no homework’ day but thought better of it (picturing repeats of the argument in hopes of another no homework day) thus, I invited them all to get started on homework. The rest of the evening was uneventful as I remember it.

Since that day I have often thought of how my kids are strong. They are fighters – I’m a fighter. Which came first – we were always fighters and therefore can deal with diabetes or did diabetes bring out the warriors in us.

Since diabetes joined our lives I have met some of the most amazing people I’ve ever known. I would not have met them otherwise. Is that enough to not ‘hate’ diabetes – No. I hate diabetes and it will always suck. Would I give diabetes back if I could or would I like Clara says “stretch out my hands…”?

You might be expecting an answer – however I am unable to give one. I do not have diabetes – it is not mine to give back or ask for a do-over. Like so many other things we play the “what if” game with – I am not sure I would be willing to give up all that we have gained, all of who we have become for a do-over – instead I ask that we work towards a cure – join a “former pwd” group. Having had a hand at ending the crazy that is diabetes.

It all comes down to the fact that Diabetes is not who my kids are – it is what they have. And I am thankful that my dear son can now separate the two and recognizes that just because diabetes sucks – it doesn’t mean that he sucks.

You Must Experience It To Understand It

DSMA July Blog Carnival

The Diabetes Online Community, or DOC, is a pretty amazing thing.  We each might be looking for something different from the DOC and we each have unique experiences.  With that in mind, we’re looking back at the chat from June 13th called Winging It and would love to hear thoughts on the following sentence . . . .

The diabetes community has taught me how to _______ and _______.

 

I must say that was an amazing DSMA chat.

I went to bed smiling – feeling like all was well with the world.

That night when the same question was asked I answered the following:

“The DOC has taught me to NOT berate myself for not always being the perfect pancreas for my kids and to celebrate success”

BUT – there is so much more that I didn’t share because well – I was busy trying to keep up with all the ideas and thoughts other DOCers were sharing.

Some of the other tidbits of truth the DOC has taught me are:

  • Unicorns are not just for little girls
  • Diabetes is hard (I knew that but it’s nice to be validated)
  • Complications are not inevitable
  • That PWD and parents of CWD active in the DOC are funny, smart, supportive, tad bit crazy and a whole lot of fun
  • I am not alone
  • There is always new technology, studies, trials, and tools that I can learn about
  • How to convert mg to mmol and visa versa (math hurts my head)
  • That a No Hitter is not just in baseball
  • It’s ok to have a bad day
  • #howtouseahashtag
  • There are more families than I thought with multiple kids with diabetes (hate the cost of joining the club but the members are fabulous)
  • Everything will be alright
The question that followed the above question during that awesome DSMA chat was this:

What does the diabetes community mean to you?

 I answered with this: The DOC means sanity, friendship, support, love, knowledge, power and courage.
To fully grasp this you must get involved. It is not something that can be explained or demonstrated. It must be experienced. The DOC is not about self-promotion or simply sharing articles or blog posts. To truly experience what the DOC is one has to get connected, have conversations (which are visible to – well everyone {unless done in Direct messaging}), attend the DSMA chats, read and respond to posts shared by others and share thoughts not just check-ins. There is certainly value in being a spectator – one can learn a great deal from watching a game but to fully experience it you have to suit up. 
Awesome Image above was created by the DOC’s very own Mike Durbin (@mydiabeticheart) – he created in last year for Diabetes Art Day. You can read more about his art here.  Mike’s art speaks to me because the majority of the DOCers that I interact with daily (sometimes hourly #Ihavenolife) are not in my town, not my state – many not even my country yet we are connected regardless of distance, type of diabetes, age, gender, race, or religion. We are united by a cause.
“This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information athttp://diabetessocmed.com/2012/july-dsma-blog-carnival-2/

 

Anger Issues

Hi my name is Christina and I have anger issues. That is a bit of an exaggeration – although my kids might suggest it is accurate. I will admit I have been and sometimes still am a yeller. I don’t like to yell it hurts my head and truly accomplishes nothing. I obtain better results if I whisper. I have friends who never seem to raise their voices to their children. The kids seem about as well-adjusted as mine though – each with their own issues.

My kids do have some aggression issues – but only towards each other. None of them have ever been aggressive towards others. However, if any one of them gets overly frustrated it can be like dogs fighting I almost have to throw a blanket over them or spray them with water to break it up. There don’t seem to be any rules either – punching, slapping, pushing, kicking, all fair methods of beating the crud out of each other.

I’ve never been the spanking type. I don’t judge those who do use that method of discipline. It is just that my folks were spankers and slappers. I don’t feel I learned anything from those moments of discipline. I have occasionally given it go – always unsuccessful – just made me feel cruddy and I am certain my kids learned nothing from it. So where did all the physical aggression toward each other come from?

The physical aggression isn’t even the worst of it. They are often just mean to each other. Middles intentionally annoys his sister with every ounce of his being. Sweetstuff (seems odd writing that right now seeing as she just slapped the crud out of middles then slammed the TV cabinet door but not before screaming at me and telling me she hated me – sigh…) anyway she has zero patience for her brothers – after all she does believe the world revolves around her (do most tween girls???) Sugarboy is the devious and manipulative one. He is so good at manipulation that often adults and kids don’t know they have been played for sometime after the event. Recently he did admit “my cuteness is failing me – you don’t say yes so much anymore.”

Sometimes I try to excuse poor behavior between the kids if one or more of their blood sugars are wacky but I don’t feel as though I am doing them any favors. Will their supervisors or teachers excuse poor behavior due to diabetes related issues. Likely not. Plus since Sweetstuff has never had a single behavior or academic issue at school – but has had numerous high or low blood sugars – clearly she has the ability to make proper choices while under d-influence. Same goes for Sugarboy – the one time he had an altercation with another boy at school his numbers were spot on. Middles is the only one who has a few behavior issues at school but never toward other students – more of arguing back to the teacher when she tells him to stop talking. (seriously he will argue till the cows come home if he believes he is right) So back to not allowing D to be an excuse for poor choices – I would love to hear feedback from adult PWD and how blood sugars effected your behavior while growing up and how they affect your behavior now.

Meanwhile I will be interviewing anger management specialists for my kids who honestly seem to hate each other more often than like each other. Where did I go wrong?

Up Hill Both Ways in the Snow

Up Hill Both Ways in the Snow

Yesterday I was driving a 14ft Uhaul truck that I had packed with a good deal of my house (clutter) to the storage unit. The truck was so big I felt like the Lily Tomlin when she did the skits with the big chair – video completely unrelated to post other than a reminder of Lily in the big chair.

While I was driving the truck I thought about all I have done to prepare my home for the market – painting, packing, small repairs, etc. I also thought about the big move coming up across the country to a new state, new schools, new friends, new job, new home, etc. While thinking of all the difficult tasks I have completed or will need to complete I thought about how I became so able to complete the tasks.

I thought about my years in the US Air Force – and all I accomplished serving our country. I was never very athletic yet I graduated basic training with honors – not an easy task.

I thought about earning my undergraduate degrees and how long it took and how many schools I transferred to to complete my degrees. It took 10 years after graduating HS and 5 colleges because I began in WI after HS but then joined the AF thus transferring to a school that I could attend while serving in the AF. However, I didn’t get to finish before having my daughter and moving away from that college so I transferred again and attended college with a toddler at home and pregnant with my second. I completed one degree shortly after my second was born but went to another college to obtain my second degree while pregnant with my third. Yet I did it and while learning has never been difficult for me balancing work and kids with school takes some talent.

I thought about how being a parent is not an easy task yet I like to think I do it well despite being without family in my state to help.

I thought about how being a parent of children (yes multiple) with diabetes is a frustrating, difficult, heart aching job – yet I do a fairly good job of it most the time – and on very little sleep.

I rarely take a moment to congratulate myself for my accomplishments. I spend most my time berating myself for not being better, stronger, faster, smarter. Yet I allowed myself this short moment of self congratulations. While patting myself on my back I realized I didn’t get to be as strong as I am on my own.

I got here because I had extremely demanding parents who expected a lot from me and my older sister. We didn’t get a free ride.

My mom taught me how to iron my dads work shirts when I was in kindergarten. I was emptying and loading a dishwasher and folding clothes in kinder too. When I was 7 my folks bought a bar and our house was connected to the rear of the bar. Before school I cleaned bar bathrooms, mopped bar floors, washed bar glasses – all this in addition to regular housework. By the time I was 9 I was mowing the acre of land surrounding the bar. We moved to a new home when I was 11. At our new home we boarded horses – I mucked horse stalls, bailed hay, watered the horses and help feed them. Our land grew so did the amount of lawn I had to mow. I also shoveled snow, cleaned the pool and helped with various projects. On the weekend we cleaned house. If I went to a friends to spend the night I had to be home before 9 the next morning so I could do chores. My older sister and I were also the summer babysitters for our younger brother and sister.

I got my first job when I was 15 at a photo lab and portrait studio. I took the bus after school everyday to work at the lab – in the summer I rode my bike to work (I think likely about 6 miles each way). I bought most my own clothing, shoes, everything. (well I didn’t buy my own car – my dad bought me a 1978 reliant station wagon when I was 17 – thus I guess I did get a free ride).

I didn’t like my parents a whole lot when I was young. I thought they were mean, and treated me more like a slave than a daughter (sorry mom and dad if you are reading this but keep reading).

It was during the drive in the gigantic Uhaul that it dawned on me – I am as strong as I am because my parents never allowed me to be weak.

I have thanked my parents at various times for instilling in me an incredible work ethic. I give my all to everything I commit to. I got that from my folks and Ive known that for a long time. However I didn’t realize how strong they helped make me until I felt like the tiny child driving the gigantic truck and I wasn’t afraid. I never once thought “I can’t do this”. In fact I rarely think that – I just assume I can do all things.

So maybe my fluency wasn’t awesome while I was in elementary school because my folks never cracked a book at bedtime. Maybe my homework wasn’t always turned in because my folks expected me to do it without them telling me to. Maybe I got bullied a bit longer than some because my folks didn’t pick up the phone to yell at the school. The thing is – I survived and I am a stronger better person for it. I am an uberfast reader now (despite my tendency to make up words), I earned nearly all A’s in college (if we don’t count my first semester of my freshmen year), and I don’t take crap from anyone now.

What I learned from my moment that began with self congratulations but ended with self realization – I learned I may be too easy on my kids and I may be setting them up for failure. I may not be raising self-sufficient confidant individuals because I congratulate them for the smallest achievements.

I have seen what too much coddling creates – it creates the bagger at the grocery store that gossips while putting my raw meat in with my fresh produce and canned goods on top of my eggs. It creates the life guard at our community pool that falls asleep in his life guard chair or another who invites teenage girls to sit on his lap while on duty and then becomes angry when moms call his inappropriate behavior to the attention of management. It creates kids who can’t do their own homework because their mom has been doing it for them for years. It creates a lazy “what about me” society.

My goal this summer – teach my kids how to do laundry, mow a lawn, wash dishes, mop a floor, vacuum, clean a toilet, and cook. They will not like me very much this summer but they will thank me one day.

Thanks for baring with me in my non-Diabetes post – while this blog is mostly about the betes – life isn’t’.

What Dreams May Come

What Dreams May Come

This morning I woke up and thought the previous 48 hours were a dream. Then I saw the mini meter on my nightstand and Middles sleeping peacefully on the other side of the bed. I so badly wanted it to all be a dream.

I continue to check Middles blood sugars first thing in the morning, before meals and postprandial. Today his numbers did not spike above 149 and he woke up at 93. He was away from me over the lunch period so I could not check and he was not comfortable taking a meter with him to a friends house. He doesn’t want his friends to know until he hears it from a doctor.

I have not allowed him high glycemic index foods. Yes I know people with Type 1 diabetes can eat the cupcake but right now I am going to try my best to limit the fast acting carbs and let his pancreas rest (not giving him insulin yet). I’m trying to avoid the spikes and preserve beta cell function.

If newly diagnosed people go through a “honeymoon” phase I would say Middles is still in the “engagement” phase. I know the storm is coming (although I pray hourly that for the first time in my entire life I am wrong).

Middles fell asleep in my arms last night while lying in my bed with me. He was crying and voicing all his fears. His last words before sniffling himself to sleep were “at least now I get to attend Texas Lions Camp.” Texas Lions Camp is a week long sleep away camp for kids with diabetes. Sweetstuff will be attending for the 3rd time this summer and Sugarboy will go for the first time this year since he is now old enough. The problem is – camp is full. There is a waiting list.

My first prayer is that I am so very very wrong.
If I can’t have that – maybe there will be someway to get Middles into camp.

Membership Sucks but Members are GREAT

Price of Membership Sucks – but the members rule!

I still can’t get a minute on the laptop it seems except for late at night when my brain is fried. I had a different post in mind but then remembered I wanted to send an email to the monther of a newly diagnosed 2 yr old. I thought I would share my email.

Hi J. My name is Christina. I volunteer with the JDRF and was sent your contact information by A H who works for the JDRF. I have three children. Two of my children have Type 1. My youngest child was diagnosed (dxd) on Feb 7 of 2007 when he was only 2. It was the scariest time in my life. Nothing can prepare a parent for news like a diabetes diagnosis. However, as you can see we survived. My son, now nearly 8 (just celebrated his 5 year Dday anniversary last month) is thriving, happy, super smart and the most amazing child I know along with his two older siblings. My daughter who is also my oldest child was dxd on April 19, 2009 – two years after my youngest was dxd. She was 9. She is 12 now and beyond wonderful.
I had left you a voice mail but realized that I likely left said voice mail the very day you were taking your dear son (ds) home from the hospital. I remember when we left the Children’s hospital after my son’s diagnosis. Well – I remember that it was a blur. I remember going straight to the pharmacy to fill prescriptions, then everything is truly a blur. I remember fighting with the hospital staff telling them the day before that I couldn’t leave yet. They had wanted us to check out the day before. There was no way I was prepared to leave that safety bubble. They let us stay another night but nearly packed our bags for us the next day.
I know it may seem like it can’t possibly get better but it will. Right now you are likely a bit over whelmed with carb counting, shots, calculations (damn those math teachers telling us that we would need math one day), late nights, middle of the night checks (of course you are likely up feeding an infant too). You are likely sleep deprived, scared, angry and sad. I feel safe saying all this because I was there and I know so many others that have been there too and the story is ALWAYS the same. It will get easier. The basal doses (lantus) will level out, you will be able to carb count every plate in a busy restaurant, you will be able to recognize lows and highs with a corner glance at your ds. You will get to sleep again.
You are not alone and will never have to be alone. There are more of us out here than you can imagine (sad but true). There is a whole community online that will support you, help you, and encourage you. If you are interested in the diabetes online community (DOC) here are some helpful places to start:
Children with Diabetes is a fantastic organization that has online forums where parents share ideas, stories, questions, and support. (I love CWD and I read posts frequently. However, with any online group I suggest caution at first. Don’t share too much info first off. I read posts long before I posted simply because like any organization there are some bullies who think they know everything and don’t play nice with those who disagree with them. It is unfortunate but I felt I should give you the heads up. – Certainly not a reason to avoid the CWD forums – they have saved my butt a number of times with questions and answers, humor, knowledge, and support. I also made some of whom I consider my very closest D friends in the forums.) I am Beermargarhitamom in the cwd forums – long story regarding the username.
CWD also hosts a conference in Orlando in early July. It is called Friends for Life. I happened on it just after my ds was dxd and we were lucky enough to be in a financial position that we could attend. It was beyond wonderful. It there is any chance you would be able to attend this summer I would strongly suggest it.
The DOC on twitter is also amazing. If you are on twitter search #dsma to get started. They have lots of great tweets with links to wonderful stories, advice, education, and support. I am momof2t1s on twitter.
There are a great number of blogs written by parents of children with diabetes and adults with diabetes (diagnosed as children). Below are a few of my most favorites – I don’t get to read them every day but I try. I am a smarter more sane person because of the people behind these blogs.
Maybe I have over whelmed you with information. If so I am sorry. When my ds was diagnosed I had no one. Our local JDRF was not what it is today when we joined the D club. If it hadn’t been for me stumbling on the CWD website and conference I don’t know where I would be in this journey. It has taken me 5 years to be as involved as I am and I am not nearly as involved as others. I will be here to support you and your family to my best ability. I am available almost always. Text, call or email me if you want to talk, have a question I might be able to answer, want to scream, or want to laugh.
I am sorry you have joined the club. The price of membership sucks but the members are phenomenal.
Warmest wishes – huge hugs,
Christina

Juggling Hats

Not Enough time in the day or energy in my body.

I started this blog because I wanted a place to share my thoughts and feelings regarding all that goes with being a parent of a child with diabetes. The thing is I’m not ONLY a parent of children with diabetes. I am also just a parent, wife, substitute teacher, volunteer, home maker, pet owner, PTA member, friend and daughter, and sister.
Juggling all my hats isn’t always easy but is much the same for all parents with and without children with special needs. A special shout out to all those that fit all the above categories and work full time outside the home. I love what I do and I love my life. I wouldn’t change a thing except to one day have a cure for diabetes – I would gladly hang that hat up.

I celebrate success when I stop long enough to notice it. Mostly I feel I am skating by, doing my best but always coming up short. As a parent of children with diabetes I know there is always more to learn. I should be doing more basal testing with the kids to tweak basal rates – a fabulous feature of using a pump. In fact for the last week I have seen near perfect numbers for my dd at the 2 or 3am checks but she wakes up in the low 200’s – thus a basal tweak between 3 and 6am should be done. Why haven’t I done it – because between the time I wake kids up, feed them breakfast, pack lunches, write carb count notes, get kids off to school, toss in a loud or two of laundry, go to work myself,  run by the grocery store, fix a dinner (usually forgetting to add green veggies), help with homework, fight about showers, spend some time with my dear husband, reply to various emails regarding volunteer work, PTA stuff, clean the toilets, feed the pets, fold laundry (usually never put it away – it sits in baskets at the top of the stairs), check in with my own mom and dad – weekly, wash dishes, etc etc etc – I forget to download the pumps and make adjustments to basal rates, carb ratios, and correction factors. I try at least once in between quarterly endo appointments to download and make corrections rather than waiting for the Endo to suggest them. This too I know I fail at since I know of many parents and patience that download their pumps and meters weekly and some that keep written logbooks. It is knowing of those awesome parents and patients that I slip into the feeling of always being behind the curve.

I read a handful of blogs by parents of cwd or written by Type 1 diabetics themselves. Up till recently I never “subscribed” to any of them or “followed” any of them. I was a casual visitor where I would catch up on a couple weeks worth of posts late at night while waiting on a blood sugar to be in a good range that I felt comfortable going to bed. I would read blogs in which the author would be upset about a blood sugar in the low 200’s and I would think – oh good Lord what would the author think of the low 400’s my daughter ran for half a day until we figured out a bad site. What would they think of the spikes that the kids get all the time because I am not always around to insist on a dose at least 10 minutes prior to eating – thus they will wait to dose until after they have eaten 60 grams of carbs causing a number in the upper 300s two hours after eating. So my new resolution is to actually subscribe the the blogs/tweets of the people I admire the most in the DOC (diabetes online community) – that way I will get emails when they blog or tweet – thus causing me to be thinking more often about how I can be better with diabetes care and in turn help teach my kids to be better – more diligent at least.

Now if I could just stop time long enough to get a cardio work out in –
Notice there is no entry for exercise. I know I need to exercise. I recently found the power cord for my elliptical (it was lost for nearly 2 years when we replaced the carpet upstairs – I didn’t know it was missing all that time because I hadn’t even thought to get on the elliptical until Jan 1st hit and the whole New Years Resolution thing kicked in.) The power cord was found almost a month ago but I have yet to get on the elliptical. I just can’t figure out when I would get on it. I have friends that go to the gym at 5am and make it home to wake up their kids in time to get them ready for school. That won’t be me – I cherish every minute of sleep I can fit in between midnight and 3am and then 3am to 5:30am. Giving up even those 30 minutes between 5 and 5:30 would be torture. I think the negative effects of sleep deprivation would out weigh the positive effects of a cardio workout. I know exercise is important and would lower my stress levels, help me sleep more restfully when I do sleep, and just make me happy. It’s just finding that time.

wow what a wall of text – sorry