More than a Diagnosis

I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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More Than Diabetes – Friday 5/19

Let’s 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.)


The first post of the week I don’t have all queued up. Oops.

So, it’d be silly to not mention that I’m a ballroom, latin, and swing dancer. I mean, I’ve written about it a few times.

But besides that, I’m also:

A mom to a strong-willed toddler.

A wife to a supportive husband.

A daughter to some of the best parents on the planet.

A loyal employee and client manager.

A reliable friend.

A closet Disney fanatic.

A musical theater lover.

The worst cook on the planet. (But I make up for it by baking.)

A hyper-organized party planner.

Pinterest-obsessed.

A perfectionist.

A former choir girl.

Stubborn as fuck.

A lover of all things coffee.

A fan of a good craft beer.

A seeker of nuanced political conversation.

A decent photographer and graphic designer.

Obsessed with understanding social media dynamics.

Easily hooked by a good dystopian novel.

And lastly, not just a pre-existing condition.

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An Argument for Spoons

I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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Throwback Thursday: What Brings Me Down – Thursday 5/18

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)


I often refer to spoon theory when it comes to breaking down the mental side of living with a chronic condition. If you aren’t familiar with spoon theory, it’s basically how much energy I can devote on a daily basis to all aspects of survival. E.G. diabetes, working, parenting, etc.

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Most days, I fortunate to have enough spoons to complete my daily responsibilities. Some days, I’m pulling the energy from my ass and I barely make it through until my child’s bedtime. I won’t bother opening a bottle of wine on those nights because that would require me to 1) open a bottle and 2) calculate the effects of one 4 oz glass of wine on my current blood sugar with the amount of insulin I have on board. (See, not worth it.)

The most trying days are usually when I can’t seem to get my toddler and my blood sugars on coordinating breakdown schedules. Bean seems to know when mommy needs juice or a snack and it’s precisely when the whining starts. Usually, my husband is around to soothe the toddler while I retreat in my haze. But, since lows happen whenever they may, sometimes we are at the store, in the car, anywhere inconvenient.

The worst are the sustained lows that take forever to recover. I often feel like I can’t address my daughter’s concerns or problem, no matter how trivial, if I’m too busy pulling myself out of a low.

And I get it. Taking care of myself means I’m a better parent. No one wants a car crash. She’ll understand later. But there is something disheartening about listening to your child cry while waiting for those numbers to creep up. The screams are louder. The insatiable hunger is more intense. The urgency is greater but I’m at the will of my own body’s response. It’s unnerving.

I usually end those days with -3 spoons left at my disposal – usually sitting on the couch aimlessly flipping through social media or watching recorded television. And those spoons don’t come back. I can’t bank them and save them for a bad day. I start the next day with the same amount of spoons as the previous day. Rinse. Repeat.

Not all days are like this. Most days, my daughter is a gem and I have great support at home. Most days, my blood sugars behave. Most days, I have spoons to spare. The challenge is not focusing on the days I lose all of my spoons, but it’s hard to just not give a fork.

Diabetes is a Cranky Toddler

I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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Diabetes and The Unexpected – Monday 5/15

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?  (Thank you, Heather, for inspiring this topic!)


We hear the narrative from a variety of sources – Control your diabetes better with XYZ diet. Avoid complications and medications with better control. Your diabetes is out of control. You have great control of your diabetes. Your fetus depends on having the ultimate control of your diabetes.

Of some of the most candid advice that I’ve read in the diabetic online community, what has stuck with me the most was this: “Diabetes, by definition, is not something we can just control. At best, we can only manage it and hope for the best outcome.” So really, diabetes is a cranky toddler.

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No, really. In the present moment, there is no better comparison to diabetes than dealing with a toddler who is in serious need of a nap. Have you ever tried to reason with a fussy toddler? It’s damn near impossible.

I mean, I can try to negotiate with diabetes. Just a few more units of insulin will bring you down… No? How about a new infusion set? I can attempt to redirect diabetes. If I go for a walk, maybe I can distract this high blood sugar from escalating. I can punish diabetes. Only a 1 unit correction? No way! Rage bolus, activate! I could also ignore diabetes. Oh. 250 mg/dl? Meh.

The reaction is exhausting and leaves me wanting a nap, or a beer, or both. But deep down, I know that this sleepless, screaming, tantrum-ing reaction is temporary. A phase or blip in the grand scheme of things. Addressing the problem with this mindset often helps bring in some much-needed perspective. My diabetes isn’t always like this and sometimes there is no real reason for the less than perfect blood sugars.

Now, if you want something real crazy, you can have both a toddler and diabetes, like I do. This post inspired by the fact that my kid has skipped her nap for the last two days. Oof.

DBlog Week: Misc. Mom Hacks

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Today’s Topic: Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I don’t have too many “pin-worthy” hacks to survive as a T1; particularly ones that are deemed medically sound. (Such as refilling my pump cartridges before the 3-day mark, rage-bolusing, how to use the same lancet for over a year…)

But I have plenty of mom with diabetes suggestions that will keep both me and Bean happy while out and about. (There are also five of them – so, Friday Five!)

  1. Currently pregnant? Here is a link to a sample of a birth plan I wrote for a medicated birth with possible c-section option. Use the template to build your own.
  2. If you are breastfeeding a new baby, keep all of your “one-handed snacks,” juice boxes, and water in a “station” where you prefer to breastfeed at home. I have a few more tips here.
  3. Your strip container, glucose tablet roll, and/or your Dexcom receiver make awesome distractions/toys in a pinch.
  4. Most likely, you will pack two of the same snack while out on the road. This will save a lot of time during a meltdown or hypoglycemic event.
  5. I wear a lot more dresses now. I love my Girly Go Garter (reviewed here) to wear my pump and keep my Dexcom receiver near by while wearing dresses. This also hides my pump wire much better. (Less pulling, getting tangled in toddler feet, etc.)

DBlog Week: Health Careless

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Today’s topic: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Oh, Lord. What a doozy. Where do I begin?

It’s true. Having a chronic condition does make me intimately aware of the current faults of our healthcare system.

In the 80s, I was assigned to a pediatric endocrinologist who only made my mother cry during and after appointments. I was frequently in the hospital for trying to be a toddler on Regular and NPH insulins and refusing to eat. This was apparently all my mom’s fault. Not the technology available. Not the resources available. Clearly, my mom was a terrible person according to this endocrinologist.

So, we moved away from the HMO network we had of doctors and we started going to, probably, one of the best endocrinologists in the area at the time. Dr. Nancy Bohannon. My parents paid out of pocket for my appointments, which were about every 6 months or so. When Dr. Nancy wanted me to try a new insulin, we had to jump through a variety of hoops to fill the prescription in our HMO. I needed special clearance to start on Humalog and Lantus because my HMO didn’t regularly have it on their formulary list. Luckily, my regular pediatrician was semi-diabetes-savvy, so once we could contact her, we could get an in-network script written.

I turned 18 and moved out of pediatrics, finding myself with a brand new PCP. Someone who only knew me and my life based on the GIANT chart that accompanied my nurses. The topic was my most recent gamut of blood work results, which I completed shortly after having my wisdom teeth pulled. While my A1C was average for a college student, my micro-albumin test results were much higher than normal. Very different than my previous results.

The conversation with that doctor basically turned into a blame game. How I was wildly out of control and I have early signs of kidney failure. Wait, what? For better or worse, I’ve never had an A1C over 7.2%, so the “wildly out of control” thing struck me hard. I mean, I was in college. I liked the grilled cheese sandwiches in the dining hall, plus the occasional (illegal) wine cooler. But, clearly, my kidney function was suffering, so I was given a script for Licinopril, an ACE inhibitor to help protect my kidneys from further damage.

I never saw that PCP again. And I never really had a test result that high ever again. (I haven’t been on Licinopril in over 10 years.)

I decided I needed a new endocrinologist. I asked my new PCP for a referral. I was told I didn’t need one. Um, what? Yep – didn’t need a specialist. But, I needed to take a Statin in addition to my Licinopril because I am, at 20 years old, at a greater risk for a heart attack and all diabetics need to be on one.

We compromised. I took the Statin. He gave me a referral.

I fired that PCP after several mis-guided appointments and found someone who was all about handing out referrals. He was also like “why are you on all of these drugs you don’t obviously need?” Cool. Thank goodness someone on my side.

He left the practice. Fuck.

One more PCP later, I got a new job and left the HMO I had been with for 30+ years. I got to start from scratch with a new network of doctors I could pick. Maybe this is what I needed. Start over fresh. Finally have an HMO which will cover CGM technology because my previous would only do so if you were deemed “brittle.”

Nah. I have issues with script re-orders not being received. I have 3 different prescription and durable medical vendors all taking orders from one office in my HMO. Do I need CGM parts? Call so and so. Insulin? Order online here. Call Medtronic directly for pump parts. Didn’t get your order? Call this number or maybe this number. Or this number?

I currently see my new endocrinologist every three months, rather than annually at my old HMO. We don’t discuss much at my 20 minute long appointments, so I usually question why I go. But, I have “uncontrolled diabetes” marked on my chart, so therefore, I must need to see a doctor more often.

What are the common threads here? Blame. Guilt. Compromise. Inconvenience.

For a chronic illness that came about to no fault of my own and can  only *kind of* be controlled by artificial means, a lot of this sure seems like it all falls on me. Like, I will only get adequate care to survive if I scream for it. Or stop seeing a doctor. Or pay a butt load of money.

Why is this okay?

DBlog Week – Just Words?

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Today’s prompt: Our topic today is Language and Diabetes. There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Several years ago, I did some volunteer work for a non-profit benefiting children with developmental disabilities. They had a set standard for presenting the organization’s mission, approved vocabulary to use at their events, and so forth. For example, their beneficiaries were “children with autism” rather than “autistic children.” Describing the children as “handicapped” while at one of their events, or ever, was frowned upon. The purpose? To eliminate the stigmas and stereotypes. To say, hey, I have a disability but it doesn’t have me. Or define me. I learned a lot from working for that organization, and still try to keep the vocabulary and phrasing I was taught during conversations.

When it comes to my own illness, I waiver slightly. “Person with diabetes” is only a phrase I’ve recently began using – mostly influenced by the Blogsphere and social network. I refer to myself as a “diabetic” often enough that it doesn’t phase me if someone else says it. It’s not a slang term or a derogatory term at face value. Since I was diagnosed at a very young age and have no recollection of my life before diabetes, it does define who I am and it’s very much a part of my upbringing.

But…

There have been plenty of instances where “well-meaning” words regarding my condition are anything but.

For example:

“How can you be diabetic? You aren’t fat.”
“[thumps mid-arm] Hey, when you are done with that shot, can you give me a hit?”
“Oh, pregnancy in your condition sounds rough. Why don’t you just adopt?”
“You’re on an insulin pump? You must be a bad diabetic.”
“Well, it could be worse.”
“I couldn’t do it. I’m terrified of needles/blood/doctors/hospitals/big pharma.”
“Hey, have you tried [random supplement/cinnamon/camel milk] to get your A1C down? It worked great for me/my husband/my dog.”
“Why are you eating this/that/carbs/meat/fruit/ice cream? Don’t you want to take care of yourself?”
“This meme wasn’t about your diabetes. Stop being so sensitive.”

“Haha, look at this awesome dessert! #omnomnom #foodgram #diabetes”

I’ve heard or seen all of these. I realize people, usually, are just trying to help. Or make light of a not-great situation. While I don’t get hung up on someone calling me a “diabetic,” I do get hung up on these. I feel like there are ten zillion other responses or conversation starters or questions people can ask if they were really interested in what it’s like to be sans a pancreas.

Instead, ask me about what I have rather than what I don’t. Because the only way one can change the culture and perception of an illness is to educate and continue to talk about it. Keep talking about the things that make my illness unique and quirky, albeit frustrating and overwhelming.

 

 

D-Blog Week: Left foot, green

I am casually participating in this year’s Diabetes Blog Week, hosted by Bitter-Sweet’s Karen Graffeo.

How does Diabetes Blog Week work?  The main idea for Diabetes Blog Week is that bloggers sign up to post about a set topic each day for a week.  This way, readers can jump around the DBlog Community and get a big variety of different perspectives on a single topic.  The hope is that new DOC connections are made, and that our voices are raised to spread a little more diabetes awareness.

I missed Monday’s prompt, so let’s move on to today’s:

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Have you ever played Twister?

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The marker spins. “Left foot, red!” “Right hand, blue!” Oh, shoot, now it’s “left foot, green!” Don’t fall. (But if you do, maybe you can take out your little cousin and make him lose too!)

Call me a Debbie Downer, but I didn’t find this game fun. I’ll admit, Twister stressed me out as a kid. For one, I was small and had short limbs in comparison to my cousins. So, I never won. I hated falling down. I didn’t like the fear of my hand getting stepped on. While some get a thrill of trying to bend in strange directions while balancing all of your body weight over a primary-spotted tarp, I didn’t want to try and think about looping my leg through everyone else just so I could land on Yellow.

Why am I bringing up my childhood board game trauma and what does this have to do with the mental side of having a chronic illness?

Having diabetes is a little bit like playing a really awful game of Twister. I start with a daunting board in front of me; there is probably a strategy I should follow to keep myself upright; but one false move and everything comes crashing down.

The strategy to tackle the day to day challenges seems easy per the instructions. Just give insulin with shots. Just eat better. Just exercise. (Left foot, blue!)

But now, the insulin dose was too much. Or too little. Just treat it. (Right hand, blue!)

Now that you have some balance, let’s complicate things. Your insulin brand of choice is no longer covered by your insurance. You do okay on multiple daily injections, but you really could use an insulin pump for better control, but can’t afford it. Or you suddenly lose your health coverage or it changes and the drugs that keep you alive now feel like a second mortgage payment. You are hospitalized for a complicated hypoglycemic reaction. (Left foot, green!)

It’s a lot to take in when you are down on the ground, trying to figure out how to move your foot to yellow when you can only physically be on green. And if you are still standing, the spinner spins again with another instruction to follow. Another command to follow to ensure survival, while hoping that your next move doesn’t capsize everything.

How does one cope with the mental pressure of a chronic illness, like type 1 diabetes? (And not have a phobia of Twister?) I spend equal parts of my life serving as an advocate and educator to those who wish to listen while trying to blend in with my non-D peers in an effort to remain “normal.” Technology is available to me to say “this is close enough” and I’m told I should be happy with that.

I’ve had several burn-outs with diabetes. Periods of time where the Twister round was over, but I didn’t feel like playing anymore. Or I was too busy with other aspects of life to focus on what made me fall in the first place.

There were a few solutions I found for those points of my life:

  1. There was a book called “Diabetes Burnout,” which was recommended by one of my medical team members.
  2. Find a new hobby. Possibly one that is active. Nothing forces you to fine tune your insulin regiments like physical exercise.
  3. Talk about it with others. Blog. Join a support group. Do a walk-a-thon for JDRF.
  4. Talk to a therapist. I am a huge fan of therapy and think more people should take advantage of this kind of self-care if it’s available. Living with a chronic illness is hard.
  5. Let it take a back seat for a little while. I don’t mean stop giving your insulin all together or stop treating lows. But, if your status quo is safe and acceptable for a short period of time, roll with it for a bit.

 

#Dblog Day 5: Life Hacks for the Fashionistas

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only!

I actually only have a few, and of course, with no photo proof.

It’s hard to be a fashion icon person with a pager-like device at your side 24/7. Those slim fitting shirts, pants, dresses, whatever… forget it. As a pump wearer, I’m a very picky shopper. Pants don’t have pockets? You aren’t getting my money.

But, there are a few instances where the event calls for a skirt or dress. Oh – fine. I’ll make due.

Here are things I’ve done to make those events more tolerable:

1) Taken the arm band from an old iPod Sport holder and wrapped it around my thigh. Clipped pump to said “arm band.” (I still do this.)

2) Sewn in mesh craft bags into pants without pockets. They are the perfect size for Medtronic pumps.

3) Used a garter to hold up my pump on my leg. (Worked for under my wedding dress.)

4) Gone back on MDI for a short time. (Works especially well on performance weeks. But may not work well for everyone. Consult your doc.)

5) Used an elastic strap on my ballroom dress to clip my pump to. (Most of my costumes had at least one.)

So there you go. Happy fashion planning.

#DBlog Day 3: Pregnancy By Numbers

It appears I missed Day 2’s prompt – the Diabetes Poetry Slam. (i.e. Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.) I had a couple songs stuck in my head yesterday… does that count? No? Okay, I’ll humor you with a haiku:

Fifteen, wait fifteen
Versus the contents of my
Refrigerator.

<Beatnik snaps all around>

Okay, now on to less humorous items. Let’s talk about our feelings.

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

Nothing stirs up emotions like a pregnancy. Not just because your hormones are running rampant, but the mix of excitement and fear can make all rational thought exit stage left for 9 months. Add a chronic illness to the mix, and it’s a wonder how any T1 moms survive the pregnancy with their sanity.

I’ll openly admit to anyone that asks that I’m not having fun during my pregnancy. It’s not because of the morning sickness, or the body image issues, or the back pain, but it’s that I’m too busy dealing with numbers to actually enjoy “being pregnant.” Controlling my blood sugars is a chore now more than ever. Rather than stressing over nursery decor and child care, I’m worried about the 69 mg/dl I had one hour after eating dinner… and the pending 200 that will probably show up later.

Diabetes with pregnancy is all about numbers. Are they too high after a meal? Can you increase your basal without dipping too low in the middle of the night? How many carbs can you stand to eat without bolusing again because you think the 3 units you already have on board might cover it. (Sometimes it does… other times it really doesn’t.) The game changes daily… hourly. This is one giant math problem I can’t solve. And I don’t really think math is that fun to begin with.

Diabetes not only effects me personally, but those around me, and most importantly, the person growing inside me. And that’s a HUGE guilt trip. Usually, when a stubborn high plagues my afternoon, it only effects me. It’s my burden… my consequences alone. Now? It 100% effects someone else… someone who also doesn’t have a say in what this disease will do, despite my micro-managed efforts.

Diabetes consumes every ounce of this experience. At my 15 week appointment, I spent 20 minutes going over blood sugars, problems I was having with control, suggestions and ideas I had, patterns I saw, all while the Resident took notes for the head OB to review collectively with me before changing my pump settings again. She left to go find the head OB, but returned two minutes later and asked, “hey, do you want to hear the heartbeat?” We were both so caught up in the numbers game that we forgot about the real reason I was supposed to be there – to check on the baby.

So after all of this – why on earth would any sane, fertile woman of childbearing age with T1 ever want to have kids?

Well, this is my reason:

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Meatball at 12W

It’s hard to explain. I know deep down that my efforts, despite my fleeting sanity, will be worth it come October. The things like a nursery, shopping and the whole “nesting” thing will come along soon enough. I know I don’t have time to do a lot of things that I should be doing at this point, but I don’t feel it’s as important as making sure this kid comes out into the world healthy. And that end goal is important enough to me to keep a level head.

#Dblog Week Day 1: Test 1 2 3… is this thing on?

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. 

Well, hi! This is quite the week to come back to, isn’t? Perhaps one of the biggest, busiest weeks for Dbloggers. Maybe this will help re-kickstart my blogging habit – though, I have to admit, watching my stomach grow full of my shifting organs is rather entertaining. (The morning sickness still isn’t, however. I’m going to be one of those pregnant women, aren’t I?)

Being that I’ve been rather occupied lately, my advocacy attempts have been limited. Especially since advocacy wasn’t really the goal of this blog anyway. I just wanted a place to journal my dance journey as a T1 (and maybe squee loudly when I finally conceived a child.) Both happened, so maybe that’s why I’ve disappeared from the blogsphere a bit.

But I’ve created an interesting corner of the internet in the process. Since I let some of my IRL friends know about the blog, I’ve opened up a world I often keep private. Indirect, yet open communication through the blog allows for conversation later, usually for clarification purposes to help them understand me more.

Advocacy doesn’t have to be a big campaign. (Although – I like those too.) The more people who understand this wicked condition, the better. Even on a smaller scale within a community. It’s one more person who knows how to handle emergencies and one more person to help dispel the misconceptions.