25 Years

Yes, that is right. Well, sort of. Soon it will be 26 years, but who is counting. Honestly, I have lost count.

I have lost cost count of how many times my fingers have been poked, how many times I have had blood drawn, and how many shots I have taken. I have lost count of how many hours I have lost sleep, how many nights I forced myself to stay awake, and how many times my husband has too.

I have lost count how many insets I have shot into my body, how many times I have plunge the CGM sensor in my body, and how many times I have inserted a needle in an inner muscle to forced a stubborn high into compliance (but please don’t share that with my endo).

I have lost count of how many times a doorknob has yanked out my inset, or knocked off my CGM sensor, how many times getting dressed or undressed I have ripped out a insert or a CGM sensor. I don’t even know how many times drying off with a towel, I have lost an inset or CGM sensor.

I have lost the count of how many insulin units I have used, how many test strips I have used, how many CGM sensors I have used, and how many needles I have used, and even those silly lancets you are suppose to change every time you poke yourself, but most don’t.

I have lost count how many juice boxes, smarties, and glucose tabs I have consumed. I have lost count of how many times my family has brought me these things, and how many times they have sat with me while I consume these things.

I have lost how much time I have missed work, how much time I have pulled off the side of the road to wait for a low to come up, how much time my kids had to wait for me to be in a safer range, and how many times my husbands has sat patiently by me while my numbers rise.

I do try to forget how many complications I could have despite my efforts of always trying to stay between these impossible lines.

I know that all my D brothers and sisters have lost count as well. I know that they too will continue to thrive despite what numbers are thrown at us. I know we are all more than the disease that can define part of who we are. I know we all will continue to raise awareness and funds until Type 1 is Type 0.

25 years, and counting. 25 years and I don’t regret a thing. Because in a weird twisted way, this disease has brought an awesome community into my life, and has given so much more than silly numbers. It has given me a family that has no boundaries, and a community that rallies together to support each other. And that is a huge blessing and I am honored to be a member of.

Much Love.

The PrePack Panic

I am officially starting the prepack panic in making sure I have everything I need to survive leaving my house for 9 days.

This is just a part of things I will need to manage my Type 1. There are juice boxes missing, and peanut butter to sustain me on stubborn lows that I will most likely experience at 2/3 in the morning on my adventure to the Friends for Life Conference.

There is the missing USB port charger for five cords so I can keep devices charged. There is a missing iPad to keep by my bedside which eases the burden of knowing my number with a glance in the middle of the night.

There is insulin, syringes, a cooler with freezer packs, and a prescription cream from the rash I get with adhesives absent as well. There are other prescriptions missing that are preventive meds to keep my body healthy.

There is an extra pebble watch that is far more waterproof than one I prefer to wear missing. And other odds and ends that are not pictured.

The point is, I want my friends who do not live in my T1D world, to understand I never pick up and go. None of this is optional. I carry a lot of this with me EVERYWHERE.

Ever wonder why I have a backpack instead of some cute purse? Because I always have backup supplies with me. Even to just the grocery store.

Am I worried I will forget my toothbrush? Nope. I can buy one at the store. Am I worried about forgetting to pack underwear or pajamas? No. Not at all. But I do worry I will forget something I will need in my T1D. Every single trip I take. Whether that is a weekend or a week trip. It’s not like I can pick up most of my supplies at a local pharmacy. They all take waivers, multiple phone calls, and some supplies have to be mailed order. So I check and double check. Sometimes triple check.

But the good thing about this conference…is IF I forget some T1D supply, most likely there will be someone who has extra. And that brings a peace of mind to my soul that is hard to explain. It’s a conference where everyone pricks their finger before eating, takes insulin, waits 15 min before eating. It’s a conference where carb counts are given to you at meal time for everything. Where glucose tabs are in every single room. It’s a conference where the beep beep beep of Dexcom alerts everyone and multiple people ask who needs juice? It’s a conference where even the waiters and bartenders know that if a guest with a green band ask for juice, they stop and take care of it immediately. And often come back and ask if you need more – and then refuse to let you pay for it. It’s a conference where when one gets low, they understand when you just need to sit for a few minutes and often others will just sit beside you.

Unfortunely, most of you won’t get it. And I pray you don’t. But to my T1D friends who do get it- I can’t wait to see you!

#FriendsForLife #WhereEveryoneGetsIt
#Badavocate #BrowniesAreBolusWorthy

“Beyond A Pre Existing Condition”

Thank you Karen Graffeo at Bittersweet Diabetes for hosting the 8th annual Diabetes Blog Week. Our community thanks you for making our voice stronger, introducing us to new sites and increasing our tribe’s strength of thriving with diabetes despite what diabetes throws at us. Today I am choosing to the wildcard option. The following is the prompt for the wildcard #DBlogWeek:
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! (This topic is a suggestion from the 2016 #DBlogWeek survey.)

“Beyond a Pre Existing Chronic Condition…”

I am more than T1D (Type 1 Diabetes) that is for sure. While I thrive living with a condition that constantly needs my attention much like a busy toddler, I am much “more than my disease.”

I am a daughter, a sister, a spouse, a mom, an aunt, and a cousin of many. I am a friend to those who know me and know what a true friend is. I am a volunteer, an advocate for many other issues, and I know how to have fun. I am a business owner, an employer, and an employee. I have in my past taught Kindergarten, flipped hamburgers, and decorated cakes.

I like to cook and eat. I can make brownies that will melt in your mouth. I love to learn new things, and explore. I am a nature lover, a novice photographer, and love sports. I rather read a book, do a puzzle, or play a game than watch tv.

I have a hard time sitting still, and sometimes have a hard time stopping my imagination. Squirrel moments are a real struggle for me. Just ask those around me.

My children are smart, athletic, and kind. And I am very proud of them. I might not have been the perfect mom, but they know I love them and I know they love me. I technically have two daughters but consider many of their friends my children too.

So if by chance you run into me, do not be shy. Step right up and introduce yourself. But be aware with that hi might come a hug, And just for fun, ask me if I have brownies…I might surprise you because I just might have some with me.

#StonerJokesDoNotStopEver #ThatIsAWrapUpForTheWeek #DBlogWeek2017

And just a side note here:

Karen,

This is a wonderful week. Although I am running two days behind. I want to thank you for inspiring many new bloggers to just write, encouraging them to find their voice, and letting them know your story matters. Things people with chronic conditions need to hear more often in today’s climate.

If you want to read more of #DBlogWeek, you can find more blog post here.

Mrs. Stoner. Are You High Again?

Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong. But sometimes the things that go wrong aren’t stressful – instead sometimes they are downright funny! Go ahead and share your Diabetes Blooper – your “I can’t believe I did that” moment – your big “D-oh” – and let’s all have a good laugh together!! (This topic is borrowed from our 2011 #DBlogWeek.)

A Type 1 Diabetes Recipes For Bloopers, Laughs, and Jokes

Ingredients for Fun:

One person with diabetes

Name her Trip Stoner

Stir in some highs and lows; glucose tabs and juice and the jokes write themselves.

Examples of the fun:

My daughter’s friend who became an expert of Dexcom Beeps. The setting is the checkout line at the grocery store after eating pizza one Saturday afternoon:

Dexcom: Beep Beep
Teenager: Mrs. Stoner, Are you high….AGAIN?
Me; Maybe
Be sure to catch the cashier face and smile.

Dexcom: Beep Beep Beep
Daughter: Mom, your pancreas is screaming…do I need to bring you juice?

Same teenager spotting glucose values while ordering food at a restaurant: OHhhhh Look -You are not high, Mrs. Stoner. I am so proud of you.

When my youngest was four, I went in the gas station to get me water for a high. While at the cashier my daughter shared:

We are getting water because my mom is high.

Dexcom: Beep Beep Beep
Daughter: Yes! Candy Time! (Granted she was 19 at the time)

My daughter and I were having a serious conversations in the kitchen and I had silence a couple of Dexcom alarms and I knew I was dropping. I didn’t want to interrupt her thought process of solving a life issue. When suddenly…
Dexcom: Beep Beep Beep Beep
Daughter without skipping beep opens the refrigerator and throws me a juice box, and with a stern look:

“Really? Mom….that was low move.”

One of my favorite stories is the letter I received from my general practitioner. I have seen him since I was 19. Heck, I used to keep his kids while I was in college. In his defense, he was using a new computer program system. Recently, after my yearly physical, my glucose level at the time of the blood draw was 118. I received a letter from him concerned that I might have diabetes and I needed further blood work to confirm the diagnosis. I told my husband…Look after 20 plus years of diabetes..I MIGHT not have diabetes!

Always look for the humor in the moment. Life is too short not to laugh. Laughter is the cure to most situation. In doubt? Next time you are mad…stop…and see if you can make it funny.

Bless Your Heart Indeed

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! (Thank you, Brian, for inspiring this topic.)

Recently, I have had three different doctor assume and/or accused my diabetes of the culprit of a new symptom(s) I am experiencing without hearing the whole story or really listening to me. One doctor jump to the conclusion so fast and told me I needed to get a hold of my diabetes, and left the room without me having time to ask questions or inform him that my A1C was lower than the number that defines diabetes and has been for years. This was the same doctor who had never heard of a CGM. Which indicates to me, he is way behind in the technology and advancements in diabetes care has made in the past two decades.

Before I share with you what I would say to that particular doctor puppet (and have told some doctors who jump to the conclusion), I want you to realize no judgement on you and your care should impede your goals. If the medical team (or anybody else for that matter) judges you and cannot accept that it is not your fault, but rather the disease’s fault, that is their problem….not yours. Do you hear me? It is THEIR problem, NOT yours.

To the Doctor Who Judges Without Listening,

You sir, with all due respect, have no right to judge me nor my diabetes. I work hard at maintain a close to normal range. You have no idea of the work it takes, the due diligence it takes. You have no idea how much time I and my family takes to be sure I stay safe and have the latest technology to meet the goals I set to manage my diabetes to the best of my ability. You have no idea how much diabetes management has change. When I showed you my Dexcom, you even admitted you had never heard of it. You were amaze at the technology. That proves to me sir, your experience with type 1 diabetes is limited and way out of touched. You had no right to offend me like you did. You just lost not only my confidence in you as a doctor, you lost my trust.

Trust is essential in my care. And like I frequently tell my children when they were young. Trust is easily broken and hard to repair. I am not sure my trust with you can ever be mended because you like to leave the room once 15 minutes is up. I noticed the three times I saw you and your abrupt exit, not once but twice, even though I had a lot more questions. Yes, I am sorry to say, you have lost me as a customer of your care. It is a sad day for you and me. Because your judgement used my time and emotions more than it should.

I am proud of myself and the way I take care of my diabetes and I will never blame myself for what the disease bring my way. I know I can do a stellar job of “managing” my diabetes, and still have horrific consequences. I know in my heart, it was not me, it was the disease. I deserve better than to be judge, and I do not appreciate the judgement call you made of me. You don’t know me, but yet I know you. You are quick to judge something you know nothing about, and I do not have time for people who cannot listen and keep an open mind. So Bless Your Heart and Good Day Sir, I wish you well. I shall seek care from others who want to part of my team. People who want to help me to be the best me and who will help me attain my goals to the best of my ability.

As I leave, I shall whisper under my breath….Bless Your Heart Indeed.

Much More

Diabetes Blog Week

Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care? (This topic was inspired by suggestions from Rick and Jen.)

MUCH MORE

How cost impacts our diabetes care you ask?

Well, to calculate that quest is quite a daunting task.

And if you must know, you must first count the cost of all supplies one needs.

Meters, test strips, lancets to make you bleed.

Control solution for that meter is easy to forget.

An insulin pump complete with reservoirs and insets,

Alcohol wipes, skin tac, unisolve, and syringes for you to to jab.

Water for highs and juices for lows and of course, glucose tabs.

All in a cabinet, and some in a bag.

A back up supply, always for you to drag.

Supplies that keep you safe, to help you treat your low and to treat your high.

Add the cost of that, all together, and that is part of the cost of your diabetes supplies.

And then add in the cost of Insulin–Oh that sweet elixir of life

But with that sweet liquid that keeps you alive

Comes a hefty sticker shock price and you must have it to thrive.

Is that it? Am I done?

NO, because to get that sum,

You must be able to know

To what the insurance claims to pay and retail cost combo.

Then you get a dollar amount of what diabetes cost.

But WAIT! Yes, again. You are not done.

I told you this was not fun.

You forgot the time diabetes cost.

All that time, you have lost.

The cost of waiting for your glucose to rise,

and the amount of time for it to drop from a high

You forgot the waiting hours on the telephone,

to the doctors, the insurance, the pharmacy, and leave a message at the tone.

The time you lost in dealing with diabetes in a day

24/7/365? That is a lot you say.

Yes. It is, you see,

Diabetes is expensive and it is not just me.

It can cost so much more than money and time.

For some the price can be a limb, and/or kidneys and some will go blind.

And while we shall not dwell on that cost for long

It needs to be mention because diabetes sometimes can bring that along.

But the most precious cost to me, is none of the above.

It is the impact of my diabetes and the cost it brings to those I love.

The cost of their worry and concerns over me.

Is what I do not want to add up in the cost of diabetes.

So to others this task I will leave.

All I know is the cost to NOT treat diabetes is far too much for me

And to those who I love, and those who love me.

The Unexpected Pleasant Surprise

Diabetes Blog Week

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Many, many, years ago (ok, it was four years ago), there was a young woman (ok, i was in my late 40s) who was sent on quest by her new endo. She had been told after decades (this part is true) of not trying a pump, it was time. The young new doctor handed her pamphlets and said, you must choose which kind of insulin pump you need. But chose wisely, as it will be attached to you 24/7/365 for four years. The young lady was confused. Which one was best, she quizzed her new doctor, to which his reply came back: They all do the same job. You just need to pick which features you like best.

A daunting task lay before her. To pick an insulin pump is not a job she wanted and she was not even sure if she really wanted the insulin pump to begin with. She plead to the young man, but what if I do not like it, what if I cannot sleep with it, what if…. The young doctor smile gentle and interrupted her. If your goal is to lower your A1C, then we must get a hold of the dawn phenomenon you are experiencing. Once we get that part in a more in range number, then we can tackle the other numbers that are driving your numbers up. She lower her head. She understood. A pump must it be. A pump would help her attain her goals.

Since her diagnoses decades ago, she knew not a soul with Type 1 like her. Oh, she had meet a few acquaintance and some Type 1s here and there. But no one she could call and ask. No one she could say what do you think, or why did you pick that one versus that one. There simply was no one in her life who she could turn to. She pondered as what to do later that night. She read the pamphlets, and could not decide. Oh, what to do? What to do indeed?

It was one of her daughters who piped up a couple of days later with a brilliant suggestion on how to research the quest of deciding a pump. She wondered why she had not thought of it at all. Good Grief, she thought, sometimes the obvious has to whack you hard on the head.

She did as the daughter suggeasted and googled it. I- N- S- U- L- I- N P- U- M- P- S F- O- R T-Y-P-E 1 D-A-I-B-E-T-E-S (yes, it was misspelled…I tend be dyslexic with spelling) And then, BAM! There it was(Cue music to Aladdin)…..A Whole New World.

You see, I had no idea about the Diabetes Online Community (DOC). I mean, like none. Totally clueless. I was all of sudden connect to millions of people living, and thriving with Type 1, just like me. It was mind blowing to me. It was hard to contain my excitement. I poured over blog sites, I trolled on online communities such as TuDiabetes, and I secretly wanted to be friends with everyone.

It took me a few months to get comfortable with the online community before I finally said Hi. The cool thing is I have meet a lot of these people in person now. I have daily conversations with many of them. We have shared our everyday life with Type 1 and of course, our regular life. These people know my kids name, they know my achievements. They have stayed online with me while I sat in a parking lot with a glucose reading of 32. It was a day I could not reached my husband, and they just “stayed” with me until I was in a much safer range. (Yes, Rick, Sarah, Molly, Jenn, Kristin and Karen….that is you)

I found my tribe, with just a click of a button. A tribe who gets me. A tribe who is on a similar journey with me while we search for a cure. A tribe who cares and shares, the good and the bad. A tribe I can laugh with, cry with and no one judges. In a weird, but wonderful way, I had no idea living with diabetes would mean I would connect with complete strangers over nonfunctional pancreases. I found out I am not alone in my adventure with diabetes. And that my friends, was not what I expected and has made all the difference.

In My Backpack

In my backpack, you will find a number of things that are common. I have my wallet, earphones to my cell phone, business cards, a couple of hair ties, pens, pencils, glasses and a contact case. In my backpack you could find car keys, a random hotel key, mints, and gum. You could find a quarter, dime, nickel or maybe a penny, but most likely not.

My backpack goes with me wherever I go. Always. It is never far from me. It contains things I just might need. It contains things that keep me safe. It contains things that could, if needed, might save my life.

It contains a smaller bag with my meter, strips, and lancing device in it- so I can test and find out if I need to do something to treat my glucose levels. It contains another smaller bag with an extra inset, reservoir, a vial of insulin, a syringe, alcohol wipes, skin tac, and unisolve- in case my site fails. It contains another small bad that has back up supplies- another inset, resovior, a battery cap to my insulin pump, AAA battery and a small long red case that contains glucagon. You will also find a small clear bag of some sort of fast acting glucose. Right now, it is starburst jellybeans. And of course, there are used test strips. Those things have a way of collecting on the bottom.

Yes, I rarely need more than my meter case and my jellybeans, Yes, I rarely need the other things. But every now and then, diabetes like to throw a curve ball and when that happens, I want to be prepared.

So when you see me, an old 50 something year old with type 1 diabetes, sporting a backpack on wondering around and you are curious what is in it….you now know it contains my d-life.

And Then….

It always seems there is that added “And Then” with diabetes: You change your site, and then it leaks, you bolus for your food and then half way though you are full, your Dexcom beeps and then you drink juice, your Dexcom beeps and then you take a correction, and that list can go on and on. It weaves it way in and out of your day and then into the night. And then, there are times in your life, diabetes seems to be full of wanting attention.

It weighs heavy on you. You loathe the sound of Dexcom. You hate hearing the beeps of the pump and the meter. Beeeeep. It needs a battery. Beeeep. It needs a reading. Beeeeep. Beeeep. Beeeep. You are low. Beeeep. Your pump reservoir is low. And then Beeep Beeep. You are high. All within a span of an hour. And then you bump into the door jam ripping out your Dexcom site.

And then, you ponder of all “and then” moments as you change your site a day early and you realize how lucky you are. Lucky to live in a time where all this technology is truly a blessing. Lucky to access to such technology many cannot afford nor have insurance that covers a good part of it. And then, you are humbled.

Do You Still Love Me?

The following blog was inspired by an innocent question of a eight year old boy to his mother, who I love both to the moon and back.

Sometimes we, with a chronic illness, can only see how we impact those we love and cannot see past our guilt. And sometimes we need to be reminded we are worth way more than our broken parts and we are worth the unconditional love of those we love.

There once was a young one with diabetes who once sighed

As he said to his mother with sad eyes:

Do you still love me even though I have diabetes?

Do you still love me when I am so low and shaky?

Do you still love me when I have to stop what we are doing, and wait for my glucose number to rise?

Do you still love me when I miscalculate the carbs and go high?

Do you still love me when I miscalculate the carbs and go low?

Do you still love me when I have to drink all the water and to the bathroom I go?

Do you still love me when I forget to bolus?

Do you still love me when I cannot focus?

Do you still love me when you wake up in the night because Dex is screaming for attention?

Do you still love me when I am high and I cannot control my emotions?

Do you still love me when I have to call my day short and rest my tired body?

Do you still love me? Do you still love me my dearest mommy?

The mother pulled the young one to her and hugged him close to her heart

And with all the love she had, she then remarked:

Of course silly little one, my dearest little ball of fun.

I will always and forever love you my dear little one.

I would love you even if you had three noses.

I would love you even if you had no toe-zees.

I would love you even if you were bald.

I would love you if you could not throw a ball.

I will always love you just the way you are

I will always love you my little star

For you are the perfect little one for daddy and me,

And you will always be loved with or without diabetes.

My Dear Pancreas

Trip Stoner's diary to her pancreas: Type 1 for over 20 years. Yup, this Stoner shoots up NOT to get high.