Disney with T1 – Traveling: From The TSA to the Grapevine

Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous Post: Where to Stay
Previous Post: The Ultimate Packing List, Part 1 and Part 2


The bags are packed. The hotel is booked. Let’s go to Disneyland. Oh wait, how? And what about all of this diabetes stuff? While this is a Disney-centric series, the travel tips below are pretty general.

Coming from Northern California, I have both road tripped and flown to Orange County. I find flying to be a bit easier, but realize large families can’t always pile onto an airplane without a significant budget line item. I’ll explore both.

Flying

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If this isn’t a cost strain, I’d highly recommend this option. An early morning flight on a weekday dumps me in Orange County with more than half of the day left to play in the parks. It’s not always convenient with diabetes, but I consider this to be a small blip in the grand scheme of things.

Pros (for me personally):

  • Less travel time – particularly if very little luggage is checked or if flying at an off peak time. (E.G. weekday mornings are VERY busy and require 2-3 hours before the flight takes off.) Most of the time, things go smoothly.
  • Checking Luggage – my preferred airline, Southwest Airlines, allows up to 2 free checked bags. Great for all of those extras I need to bring. And they have so many sales throughout the year to make the trip more cost effective. They have their faults, of course, but so does every other carrier.

Cons:

  • Based on the most recent Southwest Airlines news, cancelled flights and major delays can happen. (But so can traffic.)
  • Dealing with the TSA and Security “protocol” – There are lots of mixed opinions and anecdotes about how diabetes devices and the TSA do or don’t get along. I, for one, will not send my pump through the X-ray anymore, nor will I send my Dexcom through. My sensor can’t go through the scanners most major airports have now. So I requested opt outs and pat downs. This added a lot of travel time.
    Also, I had TSA agents who were either really familiar with diabetes devices and others who were not. Some just swabbed my hands; another wanted to swab all of my pocketed devices. (My Dexcom receiver actually set off an alarm once and I required three levels of permission to get to my flight.) I often arrived at the airport wondering what I’d be asked on THIS trip. And I’ve read about other travelers who just send all their devices through and they’ve never had a problem.

    • Medtronic and Dexcom both advise NOT to send their devices through X-Ray or Millimeter scanners.
    • TSA doesn’t appear to send children under 12 through the scanners. The metal detectors are usually opened for small children, and their families to pass through. (Check the TSA website for more details.)
    • TSA Pre-Check is a more expensive means of getting through security, but this method allows me to go through a metal detector only with my devices on my person. No more pat downs. Or removing shoes. Or removing liquids, etc.
  • Checking luggage and lost luggage: It can happen. This is why most travelers with diabetes will recommend NOT checking any diabetes supplies and bringing along snacks or meals that fit TSA guidelines. (So, probably no Jell-O packets.)

Tips on Flying with Diabetes

  • If on MDI, carry a copy of the prescription with you. Diabetes is pretty commonplace, so an insulin pen probably shouldn’t be that surprising to find in a purse. If there are full vials of insulin in a carry on, the TSA might question it without a ‘script.
  • Bring snacks and an empty water bottle. Because airport food is expensive, as is bottled water. Fill the water bottle after Security at a restaurant tap. (Might require a food purchase.) Stay hydrated.
  • Prime and clear insulin pump tubing after landing. Sometimes air bubbles can form after being in a pressurized cabin for a long period of time. Air bubbles can cause high blood sugars later.
  • Change all devices to the appropriate time zone upon landing. (Not before.)
  • Walk around the cabin a few times during the flight if it’s particularly long. Or, schedule a flight with a layover and use that time to walk, stretch, keep the blood flowing, etc.

Road Trip

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Another viable method to Anaheim is the road trip. From Northern California to Anaheim, the trip can take about 6-8 hours, depending on the traffic and time of day. While it’s not my preferred method, it is easier for many people to load up the car and go.

Pros:

  • Cheaper. Considerably if traveling with a family of four, with children over the age of two. Plus, no luggage fees, TSA struggles, and limited food options.
  • Flexible. Want to leave at 3 am in order to catch the Rope Drop at Disneyland? Go right ahead. Everyone else can sleep in the car. Need to take a break at the rest stop? Cool. Take one.
  • Cleaner. (Arguable, if the car is not the cleanest.) But, sharing pressurized air with everyone on an airplane can make me susceptible to colds. Especially since the air is so dry. At least in a car, windows can be opened.

Cons:

  • Two days are lost due to travel time.
  • There will always be traffic in Los Angeles. Sometimes it’s tolerable. Most of the time it’s at a stand still. For hours. Nope. The Grapevine is highly unpredictable.
  • Less flexibility to move around. Unless stopping every hour is okay with everyone.

Tips for traveling by ca

  • Try to keep all diabetes supplies in the car. Not the trunk or somewhere else inaccessible while on the road. Same goes for snacks and hypoglycemic treatments. Site changes will probably require rest stop breaks.
  • If the trip is longer than 4 hours, explore using a temp basal to increase insulin during the car ride. Particularly if basals are set low to accommodate a very active lifestyle. Talk this option over with a doctor first.
  • Get out of the car and stretch as often as possible.
  • Pack meals and water/drinks in a cooler to avoid strange restaurants with questionable carb counts.

Happy Travels! Next, the first day at Disneyland!

Disney with T1 – The Ultimate Packing List, Part 2

Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous post: Where to Stay

Previous post: TUPL, Part 1


I promise this list will be a bit shorter than the items to be brought on the vacation itself. Plus, it’s fairly similar to part one; but there is no reason to carry 10 infusion sets inside. (I mean, unless you really want to. But, why?)

Let’s assume the hotel or condo of choice is within walking distance. (I.E. Less than a mile from the entrance.) And that everything is being carried in that awesome bag I said to bring in Part 1. There are other lists available on the internet about other items to bring into the Parks (like toys for kids, cash, sunscreen, ponchos, etc.) If traveling with a PWD, add these items to your stash.

  1. Everything needed for a 12 hour period of diabetes. This includes a meter with test strips, a lancing device, a method to administer insulin for meals, a full pump cartridge and functioning battery, a CGM, if used. I feel like this is common sense, but I’ve also accidentally left home without my meter or a vial of fast acting insulin. It happens. Pack it.
    • Aside: try to keep all of these supplies in the same general area of the backpack or purse. Bags are searched upon entry and it’s just easier if stray syringes also accompany the glucose meter. I’ve never had a problem with my supplies being questioned, but who knows.
    • Aside 2: If space allows, pack an extra site change for the insulin pump. Usually if I have a wayward site, I can leave the Park and walk back to the hotel to change it. But if walking back in 10 minutes isn’t an option, keeping one replacement site on hand is necessary.
  2. Something to wipe down sticky hands. This can be baby wipes, anti-bac wipes or gel, or whatever. There will be times where checking glucose levels need to occur far away from a restroom. Since everything in Disneyland sweats sugar, wiping down before a check will greatly assist in keeping everything accurate.
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    Glucose tablets!

    Snacks and Hypoglycemia treatments. I try to keep several in my bag at the top of the morning and then replenish on a midday break. This is also cheaper than purchasing snacks and big bottles of soda from Disney itself. Glucose gels are handy here because they are quick acting and flat – so they can be layered on top of each other with minimal room.

    • Aside: Disneyland Resorts allows guests to bring in their own food to the parks, so hiding these items at the bottom of a bag isn’t necessary. Bringing in meals is also an option, but I’ll cover that later.
  4. An extra pair of socks. If a midday break isn’t in the plans, pack an extra pair of socks. Water rides are fun, but sitting around in wet socks is not.
  5. Disney with T1D - Packing List part 2 - SeeJenDanceReusable water bottle. Doesn’t matter if one is brought from home or bought at the souvenir stand. High blood sugars thrive on dehydration. Stave off dehydration and purchasing multiple $3-$4 bottles of water by bringing one from home. The tap water in the Parks is okay (woo, LA Water) – see if the bottle can be filled with ice first or bring some Crystal Light or crystallized lemon packets.

Have anything else to suggest? Comment below.

Disney with T1 – The Ultimate Packing List, Part 1

Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous Post: Where to Stay


What Disneyland planning series would be complete without a packing list? (Which can then be Pinned to a random “Travel” board and subsequently forgotten about? Guilty!)

PWD Packing List for Disneyland - SeeJenDance

Look, I even offer a graphic to Pin!

I’ll start by saying that I began 2016 with a Capsule Wardrobe. Pinterest has lots of Pins touting the ease of traveling by having this teeny tiny wardrobe and visiting Europe for three months using only a carry on bag. WOW!

Realistically, I can fit a week’s worth of clothes in a carry on bag. But I probably need another carry on bag for my diabetes supplies alone. So, draw a big fat line through that fantasy. Double strike through if there is a toddler in tow.

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There are plenty of Disney trip packing lists on the internet to view for essentials, like clothing, shoes, first aid supplies, toys, etc. And while I have dabbled in some fashion advice for seasons, that’s not what this list will be for.

For simplicity, imagine the Disneyland trip is for one week, with 3 days in the Parks themselves. Assume that the day-to-day essentials are already packed. (E.G. A meter, an insulin pump, a vial of insulin.)

  1. Baggallini bags

    Baggallini bags are often recommended.

    A bag or purse. Seems obvious, right? I mean, I have to carry my pancreas in my pockets, so that space is full for other essentials, like glucose tablets, my meter, snacks, whatever. Before Bean, I could get through the Parks with one crossbody bag for the day. Now that there is a toddler with us, we have the available space of a backpack/diaper bag. I love things with pockets because organization is pretty helpful when hypoglycemia strikes. (The glucose is always in the same place.) If it’s a child with diabetes, a small backpack works wonders. (I often wore a fanny pack on family trips. No shame.) The bag should be durable, well made, and something that can get dirty/sit on the ground/thrown on sticky tables, etc.

  2. Two weeks worth of pump supplies, sensors (for pump and CGM users), or syringes (for MDIs). Because while I could only use three sets during a seven day period, I could have bent cannulas, No Delivery alarms, or just sheer dumb luck. Sometimes throwing a full box of 10 sets in the suitcase is convenient.
  3. Backup supplies. This can be in the form of syringes, an extra vial of insulin, a backup machine, extra batteries. At least enough to either finish the vacation or allow time for a courtesy prescription to be ordered and received.
  4. Glucagon kit. I will admit I’m terrible at toting this thing around. I almost never bring it with me because, while I keep an active prescription around, I haven’t needed one in a long time. (*knocks wood*) That said, it was used a lot when I was newly diagnosed, mostly because as a child, I didn’t understand my hypoglycemic symptoms. So, if packing for a CWD, include the glucagon kit. Better safe than sorry. Non-medical advice: My mom got by with putting glucose and cake frosting gels under my tongue most of the time. YDMV.
  5. Other hypoglycemic treatments. My personal favorites for the park include fruit snacks, glucose tablets (bring the whole bottle), glucose gels (if you can find them). Skittles, Sweet Tarts, Smarties, and Jelly Beans are also portable options that can be stuck in old test strip containers. I also keep juice boxes in my hotel room for overnight lows.
  6. giphySnacks! Disney Park food is expensive and not necessarily the quickest. I keep granola bars (sans chocolate, because it melts) with me because those are small, lightweight, and I can stick several in my bag without them getting smushed. (I avoid cereal bars if I can because they explode.) Bonus if they have some sort of protein in them. Great for chowing down in line or on the way to the Parks themselves.
  7. Ketone sticks. Besides the obvious reason to have on hand (testing for ketones and possible DKA), these are handy for checking if a soda is actually diet.
  8. Doctor’s Contact Information and Medical Information. Most of this stuff should, in theory, be available in cell phone contact lists and the internet. But, in the heat of an emergency? Have this stuff saved in a screenshot in Photos or in a Note. (Or the Android equivalent.) Bring insurance cards.
  9. 123181562

    Put DOWN the Minnie shoes.

    Comfy shoes and SOCKS. I’m all about comfort, especially in the Parks. I’ve racked up anywhere between 6 and 10 miles during one day. Plus, standing in line for long periods of time does a number on my feet. Since feet are a big deal for PWDs, take care of them. Now is not the time to break in those new flip flops. It won’t end well.

  10. Medic Alert bracelet. This shouldn’t come as a surprise to bring this, but I’ve only really started wearing a bracelet religiously in the last five years. So, maybe it is. They don’t have to be ugly or clunky. There are plenty of fun ones on Etsy or through Lauren’s Hope. But, in a huge public theme park like this, this is a must have. Make sure it includes the type, a name, a phone number for a parent if it’s a child’s bracelet, and whatever else that can fit. EMTs will look at the wrists and neck first for medical information if someone is unresponsive.

See that wasn’t so overwhelming. (I know, my suitcase is generally full at this point too.) Next I’ll talk about what to actually bring into the Parks.

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Do you travel a bunch as a PWD? Do you have any suggestions to add?

Disney with T1D – Series Post

 

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About three years ago, I wrote a very similar post about navigating the Disneyland Resort with diabetes. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

First things, first.

Who are you?

Maybe an adult with diabetes, like myself; or maybe a parent of a child with diabetes about to embark on the first major family vacation post-diagnosis. (**waves** Welcome to the party!) If the latter, planning a vacation like this can take months, especially if Disney is new territory. Plus, there are lots of extra unique pieces to consider, like what can my child eat, where the nearest pharmacy is, can food be brought into the parks, etc.

So the date has been set. The time off work has been requested. Now what? Just book the hotel and wait? Consider the following as a family traveling with diabetes.

Where To Stay

disneyland hotel

Not mine. “Borrowed from the internet.”

Many Disney enthusiasts will encourage staying “on property,” or at one of the three resorts at Disneyland. (Paradise Pier, Disneyland Hotel, and Grand Californian.) These hotels allow for quick, and early, entrance into the parks, plus the proximity to the parks can’t be beat. For medical conditions, they offer complimentary fridge rentals to keep spare bottles of insulin or juice boxes cold. But – they are usually pretty pricey per night and don’t usually have an included continental breakfast.

My alternative locations are nearby “Good Neighbor” hotels on South Harbor, which range anywhere from a Best Western Park Place Inn (fridge, microwave, free breakfast, steps from the entrance) to the Sheraton Park at the Anaheim Resort (near CVS pharmacy and GardenWalk Anaheim).

If there are several travelers, there are many vacation rental condos through VRBO or AirBNB in the area. These typically have a full kitchen (cook carb-countable meals!) and multiple rooms. Usually for the price of a higher end hotel or a suite. They aren’t always cheaper than a nearby hotel, nor are they super close, but the money saved making meals in-house is worth it. This is what we’ll be using in November.

Proximity to the Resort can mean the difference between carrying in loads of spare supplies into the Parks, or quickly leaving and returning before a botched infusion set becomes dangerous. I always advise staying somewhere within walking distance, if possible.

What’s Nearby

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While staying close to the Resort is important, so is proximity to key emergency-type services. At the very least, locating the nearest pharmacy is important. Within the last year, a new CVS network pharmacy opened on South Harbor a few blocks from the Parks. It’s open 24 hours. There are also several WalMart and CVS pharmacies drivable from South Harbor.

Further down South Harbor are a Walgreens and a Target. The Target will have glucose tablets, juice boxes, and portable snacks in a pinch.

There are also several convenience and souvenir shops along South Harbor and Katella that sell snacks, waters, candy, sunscreen, and so forth if something didn’t quite make it into the suitcase.

In the rare chance that an emergency room would be needed, Anaheim Regional Medical Center is about 5 miles from the Resort.

Luckily, I’ve never needed emergency services while on a Disneyland vacation. But, I have begun traveling to a destination, only realizing too late that I had two test strips left for a three day business trip. I ended up purchasing a vial of strips with cash, thus skipping a call to my doctor for an emergency prescription sent to a random pharmacy.

Point is, know what is nearby ahead of time and if a prescription can be ordered as a courtesy. (Or can out-of-network refills be reimbursed upon return.)

So, the place to sleep has been set. What now?

Approval

Conversations a woman with diabetes must face when considering getting pregnant.

OB/Gyn:

“Okay, so when do you plan to get pregnant again?”
“Whenever. My husband and I are prepared now, but any time within the next year would be ideal.”
“No, really, when do you want to get pregnant again?”
“If it happens next month, it’s fine.”
“Ohhhh – I see you have T1 diabetes. And your A1c is not quite where we’d want it to be for preconception purposes.”
“Yes, I’m aware of that. But I’ve been through this already and know what’s expected of me.”
“When did you deliver?”
“41 weeks.”
“Whoooaaa! You must have been really good at what you were doing and knew your stuff to let Dr. [MFM name] let you go that long. But, still, your A1C needs work.”
“Yes, I’m actively working on it (lady, get off my back)”
“Well, are you sure you don’t want another form of birth control/pre-conception counseling? We even admit women with diabetes who don’t have great control of their diabetes, but your’s seems almost there.”
“No, thank you. I know what the expectation is.”
“So when do you want to get pregnant, again? Because since you have diabetes, you are at a greater risk of miscarriage so we want that A1C to be below 6.0.”
“…”

Endocrinologist:

[runs through insurance provided check-list] “…And you are still on [form of birth control]?”
“No.”
“So are you using any sort of birth control right now?”
“I’m tracking my cycles casually, but no, not really.”
[Something incoherent about A1C not being where it should be, greater risk for miscarriage, blah blah blah, I stopped listening.]

Blood Sugars:

“Oh, you don’t have any hormonal birth control in place?? WOOOOOO HOOOOOOO! ALLLLL THE HYPOGLYCEMIA!”

 

Well… they did want my A1C lower.

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?

1966_Twister_Cover

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.

 

Friday Five: WTF Happened This Week?

It’s Friday y’all. So much happened this last week that didn’t involve a certain reality TV star getting the GOP nomination. Here are some of the highlights and things to look forward to.

  1. United Healthcare teams up with Medtronic to only offer their insulin pumps and supplies to their subscribers. The Diabetic Online Community is buzzing about this. There is a lot of GOOD commentary about why this is a strange and somewhat scary decision and how all of this effects PWDs. Especially for the future of finding better care and solutions to simply exist as a normal person. I’m not going to throw more opinions out there since I’m still trying to formulate my own, but here are some  links/blogs to check out to get a background:
    Storyfy – the series of tweets, Facebook posts, and other social media tidbits from all parties involved to get the gist of the story from a facts perspective.
    How is Milk like Insulin Pumps? – Christel/ThePerfectD’s analysis of what this means in a real-world example.
    Choice is Necessary – Stephen/Happy Medium’s thoughts on the new relationship and how this helps showcase their parent company’s mission statement. (Spoiler alert: it doesn’t.)
    I Could Be Mad – Test Guess and Go’s feelings are similar to mine and I share a lot of Laddie’s thoughts. This one hit home.
    A Chain of Thoughts – Scott/Rolling in the D doesn’t post as often anymore, but I wish he would. I agree with him on the call for government oversight to end insurance companies acting like medical professionals. I also wish to use this post to squash fear that Big Government Run Health Care will act as a “Big Brother,” collecting and storing your data, so you may or may not get the care you need. Hello! This already happens in the private sector.


  2. Along these lines of healthcare, my podcast addiction, Pantsuit Politics, is actually covering the Affordable Healthcare Act next week. Between all of my Bernie Sanders friends touting  universal, single-payer, healthcare vs. my conservative friends pushing for the return to the free market for health insurance, I’m actually really anxious to hear what the hostesses have to say in their analysis. Given that this topic is hot and constantly thrown in my face, I’m struggling to figure out what the hell I want in my ideal healthcare system. Currently, the ACA IS my ideal choice, pending it actually worked properly. (Yay, public sector technology!) It’s a faux free market, which allows me to shop for a plan with a pre-existing condition, but I still (for now) can get a plan which will cover a multitude of diabetes durable medical equipment based on what my priorities are. (E.G. do I want one option for my insulin pump supplier at 100% coverage, or can I managed 80% coverage but switch pump companies as I choose?)
    Anyway, Beth, the conservative leaning hostess, posted a Primer on the ACA in preparation for Tuesday’s podcast. You can check it out for a very brief overview.


  3. It’s Spring Show Week! Quite possibly, my last Spring Show in a pro-am partnership since my instructor is moving across the country this summer. But, I’m not saying this is DEFINITELY my last showcase, because I said that one year and it didn’t actually happen. Anyway, I ran into another PWD performer during dress rehearsal. Meeting dancers with Type 1 diabetes is a rare occurrence – meeting them at your studio’s showcase is probably a 1 in 1 million shot. But, there we were, discussing where we could possibly put insulin pumps while wearing spandex and then performing.

  4. Capsule Wardrobe Related. Yes – I still have a small-ish selection of clothes to chose from in the morning and still plan on maintaining it for the remainder of the year. There have been a few hiccups lately when I realized that I didn’t keep a lot of my sparkly, trendy items in my ballroom costume bin, which probably would have helped when I was figuring out an alternative costume for my Spring show piece. (I didn’t need it, but I would have liked the option.) But I’ve moved from keeping only a certain number of items in my closet at once to making sure that what I have in my closet actually works, and that new pieces I purchase are from places with good sustainability practices. (And that my discards get recycled rather than tossed out.)

    I have been following a group on Facebook that focuses on Ethical Shopping . I don’t think I have the lifestyle (or the size) to dive into that kind of shopping head first. (Especially when simple t-shirts can cost $18+ and I have a messy toddler.) But, I figure I can do what I can by seeking out USA made items, or supporting a local business (part of the reason why I like Golden Tote so much). Second hand shopping online is super cheap and easy. And, I’ve reached a point where I don’t feel like I NEED anything in my closet – at least until the weather changes again. So – no shopping equals more money in my pocket for our vacation in November. Win win.


  5. Happy Mother’s Day! Which is Sunday, by the way. Make sure you call your mom, your grandma, or other maternal/parental figure this weekend to say “you’re awesome!”