May The Force Be With You

I’m a Dmom. I have two kiddos with Type 1 Diabetes. My job as a Dmom includes any number of things that are normally done by a person’s pancreas but the thing I want to share about today is night-time blood sugar checks. Im not going to suggest that all Dparents need to be doing night-time checks or suggest that night-time checks are unnecessary. Those are personal family decisions that can change daily. I was just reminded lately of a specific night-time check that still makes me giggle years later.

Having two kids with diabetes means the odds are against me when it comes down to getting a full nights sleep. When only one of our kiddos had diabetes I would get to sleep through the night three maybe even four days of the week because blood sugars would be playing nicely and other issues (amount of activity that day, what was for dinner, active insulin still working in my child’s system) were not factors. When my second child was diagnosed the chances of a full nights sleep decreased since all the factors for both kids were less likely to gel.

To check a night-time blood sugar a few things are necessary. First, I need to set an alarm to wake me. This means my alarm clock has to be outside my reach. In my home in Texas I kept my alarm clock in my bathroom, 15 feet from my bed. Thus I was required to get out of bed to turn it off and the chances of me sleeping through it were slim. Second, I need to have the kids glucose meters in their rooms. Normally this isn’t an issue since I check them before I go to bed but there have been times when the meters are left downstairs and so I would need to navigate stairs in the dark to retrieve the meters. Other times the meters would be in their rooms but they would be lacking test strips – this too required a trip downstairs. Third, light. While some meters such as the VerioIQ (we can’t use the Verio because our insurance won’t approve the test strips) have a bright display and a light to illuminate the testing area (finger) our meters do not have a bright LCD display or a light. Without a bright meter a certain amount of bedroom light is necessary to check a night-time blood sugar.

One night a couple years ago I went in to test my son’s blood sugar. I twisted the switch on his bedside lamp but alas no light came. Reluctantly I flipped the wall switch, hoping my boy did not wake up, but that too would not illuminate (light turned off high above via the chain on his light/fan combo). I was tired and likely only half awake so I grabbed the next available light source.

Yes it was an authentic replica of a Star Wars lightsaber. It was a Christmas gift the prior Christmas. It is exceptionally bright and makes the coolest and most realistic lightsaber sounds. I turned it on and heard the ‘whoosh’ sound so familiar to any Star Wars fan or mother of young kids. I wielded it through the room as whooshing and swooshing sounds echoed around me. It provided the light I needed to test his blood sugar which was behaving well. I turned to find my reflection in his dresser mirror. Sporting my bubble gum jammy pants and cami, hair disheveled and face puffy from waking at 3am – yet I stood there waving my Jedi weapon feeling incredibly powerful.

Diabetes has the potential of many terrible complications. I have no desire to go into the physical complications but I wanted to make note of an emotional complication that effects both people with diabetes and those that love them. It is a feeling of being powerless or weak. There are days that Diabetes kicks my butt. On this night in the blue glow of Obi-Wans lightsaber the Force was with me and I felt powerful.

The photo above was not taken the night described above it was taken just last week while chatting with a DOC friend about Star Wars around midnight (yes I am a nerd). I was not blogging back when I used the lightsaber to check a sugar and thus had no inclination to take a photo but having snapped the picture last week I  decided to share the story now for the Day 9 prompt – Tell a story about a memory – from the National Health Blog Post Month list. I am 10 days behind the challenge due to travel, construction and life. 

 

Dear Health,

Dear Health,

I know its been a while since I considered you. I know it seems that I care more about the health of others than about you. That unfortunately is true. I do appreciate that you have been holding on, patiently waiting for me to through you a bone. It isn’t that I try to ignore you, it’s just hard to find time for you when others depend on me so much. Luckily like so many of my friends you haven’t forsaken me even when I’ve been so neglectful of you. I do think of you and not only when my body aches or I notice my jeans are tighter. The thing is I think of you when I imagine what others might have to endure if you fail me or more likely I fail you.

One might think that knowing I am responsible for the lives (literally) of two of my children and the well-being of my family would be enough to motivate me to skip the fourth snickers bar (although they are mini, stolen from Halloween bags), or to go for a walk (but who would do the laundry or wash the dishes or cook dinner?), or to use my elliptical machine, or drink water rather than diet Dr. Pepper (oh the horror), or go to bed before midnight (but when would I blog?) There are always excuses. I know I make so many excuses and promises. All the News Years resolutions that I have failed to achieve – it’s sad. Yet you stick around. I wonder if I am playing a game of Russian Roulette. I wonder with each week of late nights, no exercise and pots of coffee – will that be the week a round is loaded into the chamber?

Yes I have noticed the little things. The sore muscles, the increase of migraines, the fatigue and of course the buttons on my jeans that seem to have moved further from the button-hole. Are those subtle hints that I need to stop and pay attention? You have gotten my attention. The field trip on Wednesday where we hiked for nearly 3 hours up and down mountain trails – yup I felt that. Still feeling it actually. So ok. I hear you. Time to get focused. Bed before 11pm, swap the soda for water (well baby steps – half the soda for water), time to put the Halloween candy up, stretch, walk the dogs (trust me my Buffy could use the exercise too), and no more coffee past 10am (oops baby steps – noon).

Thank you for playing so nicely for so long despite all I have burdened you with (no need for full disclosure of college years – you were there). I appreciate you and will try to be better, work harder and pay attention.

With warm regards and many thanks,

Me

I am participating in the National Health Blog Post Month via Wego Health. Today’s prompt was write a letter to your health. I don’t often write about myself – this is a blog in which I mostly write about my kids and their lives with diabetes. The thing is my continued good health plays a large role in their health. I can’t take care of them if I am unwell. I’ve been lucky so far considering what I put my body through. I am fortunate to be able to do all I do when there are so many out there that do not have the same opportunities. This is where I remember the Spoon Theory and all my friends living with chronic illnesses that suck away their strength – what they wouldn’t give to be able to do the things I can do but choose not to do. Hugs to those friends.

 

It’s The Good Advice – You Just Didn’t Get*

Day 7 National Health Blog Post Month.

 

Want to hear all of ‘Everybody’s Free’ click HERE

Chose a Bonus Prompt again today. Advice for Newly Diagnosed patients.

February 2007 – Sugarboy was diagnosed with Type 1 Diabetes

What was said (yes these things were said)What I wish was said

It isn’t that hardIt ridiculously hard

It will get easierIt will never get easier, you will get better

At least it’s only diabetesDiabetes sucks ass 

He shouldn’t go back to school (mothers day out)Get him back to what he knows

He should avoid sweetsHe can eat everything anyone else can eat

Diabetes is a brittle disease – He can do everything anyone else can

Other things I wish someone shared with me:

  • There are online communities of other parents and people with diabetes that will help keep you sane.
  • Start teaching him right away how to care for himself – independence builds strength. (not suggesting someone give syringes to a 2-year-old – only suggesting involving every child in the decision-making process – how many carbs are in that? Oh you’re high, what should we do about that? You want to go ride your bike, what should we do first? etc.)
  • Take care of yourself too – you can’t take care of your child if you end up sobbing uncontrollably in the fetal position on your floor. Take time for your friends, exercise, eat healthy, find others to chat with about D and NOT about D.
  • Start a blog – it’s easy and it doesn’t have to be about getting noticed – it can be about clearing your head. A journal works too if you don’t want to put everything out in cyberspace. Keeping anger, frustration, and sadness bottled up can kill you slowly.
  • Read diabetes blogs – not all will speak to you but there are countless blogs out there to choose from.
  • Get plugged into Twitter and the Diabetes Online Community. Search #diabetes #DOC and #DSMA to get connected with others in the D community.
  • Try to avoid becoming the sole diabetes care provider in your own home. Involve your spouse so you have a partner from the beginning. (not suggesting my dear husband isn’t a partner in care for our kids D – but I’m a bit of a control freak so he let me take the reins and I didn’t share all that I had to do – I got burned out and then breakdowns happen)
  • Attend diabetes conferences if possible. It is a great way to meet other people with diabetes or parents of children with diabetes.
  • Send your child with diabetes and if possible his/her siblings to diabetes camps. Being different is difficult and thus being at a camp (day or overnight) surrounded by others just like them does amazing things for their self-esteem and understanding.
  • Don’t berate yourself too often or too much. Mistakes happen, meal boluses are occasionally missed, we occasionally sleep through 3am alarms, A1C’s fluctuate (hormones be damned), it’s ok to be sad, angry, frustrated and tired sometimes.
  • Find laughter within the madness when you can.

So there you have it – my list of “I wish people had told me”. It’s taken me nearly 6 years to get here and I’m not done learning yet.

 

Hi Ho Hi Ho It’s off to Wisconsin We Go

I am participating in the Wego Health National Health Blog Post Month Challenge.

Todays prompt suggestions were:

News-Style Post – seriously? I can barely put a coherent thought together in first person. Although I’ve read a number of News-Style posts today that were fabulous. See a couple of them Here and Here.

I grabbed a prompt from the Bonus list for today.

Write about what it’s like to travel with ‘your’ condition.

On Friday my dear daughter and I will hop a jet plane to WI for my older sisters 40th birthday celebration. It will be a quick trip Friday – Sunday but at least I get to see my sister and Sweetstuff gets to see her twin cousins that are only 2 days younger than her. We are very excited.

Traveling with diabetes isn’t the easiest task. There are so many variables to consider.

Packing – how much diabetes crud to take

  • infusion sets
  • insulin, pump cartridges
  • batteries {yes there are batteries in WI but the pump or meter might go low in route}
  • test strips
  • glucose tabs
  • ketone strips
  • glucagon emergency kit
  • extra meter
  • fast carb snacks
  • carb free snacks
  • juice boxes {yes TSA loves this}.

Adjusting pump settings for extended sitting while in the air – how far in advance do we set temporary basal rates?

Since I am leaving Sugarboy at home with daddy I also need to consider what to have prepared for them. I will need to do an infusion set before I leave since my little guy prefers I do them rather than his dad. I’ll need to be sure an extra glucometer is in daddy’s car in case they leave without Sugarboy’s meter (happens more often than he’d like to admit).

Once we are packed there is the ordeal at the airport to deal with. TSA rules have changed many times since the kids started pumping. It used to be the kids had to leave the pumps on and walk through metal detector, thus alarming it and then the kids and I would get pat downs. Then we started removing pumps prior to walking through the metal detector and asking the pumps to be hand inspected which involved some type of swabbing with a small square of cotton. There have always been some TSA agents who try to insist that the pumps can go through the xray machine – NO THEY CANT. Most recently I had my kids take the pumps off at SFO and asked the TSA agent to hand inspect them. This resulted in a full pat down for me and full inspection of my luggage. Then they wanted to put the pumps in this weird machine (looked like a centrifuge) I DONT THINK SO! 35 minutes later of arguing we left TSA behind but only after TSA told me I should leave the pumps on the kids since they are under 17 they wouldn’t even get a pat down. Moral – every airport is different.

The juice boxes are treated differently at each airport too. Sometimes I’m allowed 2 for each kid, sometimes I’m allowed 4 each. Sometimes TSA agents want me to open a juice box – HUH?

Traveling with diabetes can be a real pain in the finger* but with proper planing and lots of “roll with it” attitude it isn’t terrible.

Note the sign above my dear daughter. This is in the Milwaukee airport.

First Ones Free

Day 5 of National Health Blog Post Month

Hi my name is Christina and I am a Health Activist. I started out sharing just a couple of thoughts a month. It was easy really, someone would say something stupid and I would react. Then I found that I wanted to share more. I tried to control it. Tried to be just like everyone else. Every time I thought I had a handle on my sharing something would cause me to spiral into sharing sprees; a few extra highs or lows – that’s all it took and Id be off my wagon and up on my soap box again.

Talking to friends was just the gateway. After awhile it wasn’t enough to only share with friends. I craved sharing all the time. I’d respond to blog posts just to get a fix. I’ve tried to get others hooked to. Asked friends to ‘share’ stuff on their pages – first ones free. Sometimes my activism really angered people. Once I received an email asking that I remove a person from my email list. That was hard, so hard that it made me share more.  I have even been ‘unfriended’.

It wasn’t enough sharing with adults. I moved on to kids. Get’m hooked when their young – that’s the key. I’ve spent 100’s of hours sharing with entire schools of kids. The kids are an easy sell and always seem to want more. Even the 1000’s of kids I’ve shared with still wasn’t enough. I need a daily fix now, sometimes even 2, 3, 10 or more times a day I’m sharing – blogs, twitter, Facebook, emails… the internet enables so much sharing.

One day I hope to break the habit. One day I hope to climb down from my soapbox with no more words to share. One day.

Today’s post was “Health Activist Soapbox”

Every wonder why health activists climb up on their soapbox’s so often?

Because if we drop the soap – well you know the cliché.

You Want The Truth

Day 4 National Health Blog Post Month

Prompt: Disclosure post. How do you decide what to share? What do/don’t you share?

I am swamped today. Lots of cleaning to catch up on and I have a game room to clean out so builders can start on my daughters bedroom. Knowing all I have to do with the house reminds me of how lucky I am to have one when considering all those on the East Coast who have lost their homes. Sending prayers to those who lost so much.

With all there is for me to do, I was tempted to post the following:

“You want to know about my disclosure – sorry I don’t disclose that.”

I have never been much of a planner. I have a tendency to dive in head first and check the depth on the way down. Up until recently.

Prior to moving to our new home and my dear husband accepting a new job I felt comfortable sharing medical insurance issues. Now our medical insurance company happens to pay our bills too since my hubby works for the company. Thus, any inadequacies I might find with the insurance benefits, doctors, customer service, etc. seem off-limits. Perhaps if my blog were anonymous it would be different. Happily there haven’t been too many things that I’ve wanted to blog about but felt restricted.

Another topic I have filtered since my move are my thoughts regarding schools in California when in regards to diabetes care. Since I am still working on ironing out issues it was best I didn’t share too much. As a parent of children with diabetes there is a fine line I walk in regards to the schools. It is important for me to convey the seriousness of diabetes along with the all too real dangers of diabetes. At the same time I need to help school staff feel comfortable taking care of my kids. California has some disturbing laws regarding who can administer insulin or even handle an insulin pump in the schools. Basically only a licensed medical professional can do anything with insulin (aside from the student). BUT most schools in CA don’t have nurses. Luckily my kids both wear insulin pumps and Sugarboy’s school was able to hire a part-time nurse. Still the fact that school staff are very stand-offish is concerning. I haven’t shared everything because I don’t know how many staff members at the school have found my blog (maybe I should rethink having it in my signature line of emails).

So there you have it. What I don’t share and why. If there is something I haven’t shared but you wonder about it feel free to ask.

 

 

The Unintentional Conversation

Today is Day 3 of the National Health Blog Post Month

The NHBPM prompts are great and I’m thankful for them but I had a untentional conversation today that I’d rather share.

Today my dear daughter was selling Girl Scout Fall Product (nuts and chocolate) outside the local grocery store. I’m sure y’all have seen the Girl scout tables in the winter with the cookies – well here in CA they do the same for fall product. Good times.

My daughter invited one of the passerby’s to purchase nuts or chocolate. The gentleman inquired if there was a low sugar or sugar-free version of chocolate. My daughter said “no sorry but we have nuts” The man replied “no – guess they (girl scouts?) don’t like diabetics. Then he walked away.

My daughter and her fellow girl scout friend (who also walked with us for the JDRF Walk To Cure Diabetes) looked shocked and my daughter a little hurt.

The man had walked over to a group of tables to enjoy his Starbucks. I told the other girl scout mom I was going to go tell him what he had said was hurtful to my daughter. The other mom suggested I not and I considered not walking over but seeing my daughters face pushed me forward.

I approached the man who was reading something on his phone. I apologized that the Girl Scouts do not offer a sugar-free chocolate product. The man waived that away and simply said “Its normal – hard to find a low sugar or sugar-free desert.”

I went on to tell him that the young lady who invited him to purchase fall products is my daughter and has diabetes. He shook his head and said “I shouldn’t have said that. It wasn’t necessary and the girls don’t need to hear it. I’m sorry”.

I was pleased. He got it. Then he went on.

My son was diagnosed with Type 1 when he was 18, he is 31 now. He uses an insulin pump. I’m not taking shots. I try my best with diet, exercise and oral meds, been 5 – wait 9 years now – wow time flies.”

Huh – that surprised me. Here I had pegged him as an angry recently diagnosed person with Type 2. He does have type 2 but I doubt all his frustration comes from his diagnosis. He has spent over a decade hating diabetes – not for him but for his son.

Yes I skipped the NHBPM prompt – but I just thought Id share a conversation that I hadn’t expected. We talked for a good 20 minutes about complications, which type is ‘worse’, what foods cause his sugars to spike more than others (rice btw), how many times he tests a day, and how his son struggled for a good deal of time managing his diabetes prior to getting a pump.

I fully expected an argument when I decided to approach the man. I was ready to berate him for his insensitivity. Turns out I received a lesson about making assumptions.

Post Script –

Have you done the big blue test today? Learn about it now HERE.

 

“No You Silly Old Bear”

Day 2 of National Health Blog Post Month

Click HERE to start writing your 30 Posts

Today’s prompt – Find a quote and use it as inspiration. (Ok I admit it is the alternate prompt – the other is ‘the weirdest thing about our health’. Honestly – I stopped trying to figure out the rhyme or reason with diabetes a while ago so nothing strikes me as weird.)

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

Christopher Robin – Pooh’s Most Grand Adventure.

Pooh & Christopher

Don’t you just love Pooh Bear.

I use this quote frequently with my kids to remind them that they can do so many things, that they do more than most, and that they wont know if they can until they try.

I use it to remind myself the same things.

Diabetes has a way of making us feel small and inadequate and bad.

The quote reminds us we are not small, not inadequate and not bad.

Don’t believe everything you think!

A second quote by my dear daughter:

“In a world where finding faults with ourselves is so easy, rejoice in the moments you truly love who you are.”

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)

Public Service Announcement

No amount of cinnamon or cherries will cure or reverse diabetes.

Type 1 Diabetes is an autoimmune disease that causes one’s body to destroy insulin producing cells in the pancreas. Once triggered (can not be triggered by eating sugar or not exercising) it can not be stopped or reversed, despite what the unicorn riding merpeople might lead others to believe. There are no miracle cures. A cure will come one day but it will be via the dedicated work of scientists, doctors, researches and study participants who are tirelessly working toward the cure daily.

If you would like to further advance the development of a cure for diabetes please educate yourself on true causes and current diabetes management – then find a organization like the JDRF, ADA, Diabetes Research Institute, Diabetes Hands Foundation – and donate your time or money. If you know someone with diabetes or someone who loves someone with diabetes please refrain from offering up magical fairy farts (otherwise known as miracle cures) as a solution.

That is all.