Saturday, July 28, 2018

Resource Hub

NOW IN PROGRESS

Who doesn't love resources?

As a social worker, much of what I do is provide resources. Whether it's for finances, prescriptions, mental health, or community support, there is an abundance of resources to be found and shared. The more time I spend in my field, the more I realize how the type 1 community would benefit from many of these resources. This is why I'll be constructing a resource hub that will become a permanent page of my blog. You can find it next to the "Medical Disclaimer" bar. This will be an ongoing project - I'll continue to add resources as I come across them. Most importantly, I want to hear from you guys - know of a resource that I don't have on my page? Have a good or a bad experience with one of them? Let me know!! The resource hub will go live on Thursday, August 2nd, so stay tuned.



Sunday, July 8, 2018

Thoughts on a Fractured Foot

As I write this, I stare pitifully down at my left foot and right knee. Each is carefully draped with an ice pack. My left foot is wrapped in an Ace bandage, awaiting an evaluation by an orthopedist for the fracture in my fifth metatarsal bone (think - the pinky bone of your foot). The swelling in my right knee seems to have gone down, but I'm over-icing it as a precaution. We still don't know what exactly is causing the knee swelling - it flares up after running or excessive walking. But a fracture in the left foot means crutches and weight-bearing only on the right leg. Which means pressure on the bad knee. Which means excruciating pain and more inflammation. My Omnipod sits inconspicuously on my left thigh, an afterthought. I use my PDM to bolus for my Sunday night ice cream, then spend five minutes over-thinking how much Aleve I should take before bed.

I'm not good at being still. Resting and elevating has been a challenge for me. Sure, I got to watch Moana and take a nap on the couch, but I like to be moving. Laying in bed last night, I didn't sleep much, unable to stop focusing on the pain in my knee. The more I lay around and think, the more often I came back to the same thought - am I being a huge wuss? This is temporary.


I mean, I've lived with type one diabetes every day of my life for the past 25 & 1/2 years. It comes to me as naturally as breathing. The pricks, the pokes, the highs, the lows...but this - struggling to get around - this is new for me. And its gotten me thinking. We struggle with what we're unfamiliar with. Someone from the outside looking in would probably assume that taking care of my diabetes is incredibly stressful. They would see the broken foot and think it was small potatoes compared to my daily finger pricks. But not me. For me, diabetes continues to be a nonchalant part of my daily life, while this foot fracture has me tossing and turning, butt-scooting and crawling around my house.

At the same time, I think that what we go through prepares us for what is to come. Time has passed and I've been given a boot for my broken foot. I've grown to have a love-hate relationship with the boot - much like the relationship I have with my diabetes supplies. I talk to it, I give a pat after it helps me get around, I consider naming it. I feel living with a pump has predisposed me to have a certain level of amicability towards health-gear. I realize the necessity of it and try not to begrudge it for doing its job.

We as humans are creatures of habit. It seems that for most of us, hard and easy are subjective - what's new is hard. Type one, for me, is easy compared to broken foot. And yes, in case you were wondering, I did decorate the boot. We'll see about the name.

Thursday, June 28, 2018

Disconnected - switching to Omnipod

I'm reluctant to write another post with a positive review, since the day after I raved about my Libre I put in a new one and had a day of completely whacked out readings. The universe has a funny way of doing stuff like that. So I won't say that my switch over to the Omnipod has gone well.


I first started on a pump when I was 9 years old, and have been on one ever since. That's 17 years on a Medtronic. Needless to say, this was a big change for me. The adjustment has been interesting. I still find myself reaching for my waistband when I want to bolus. I catch myself guarding my waist when I walk through doorways or change my clothes. But after the initial disorientation, I've found myself feeling pretty liberated. Right now I have the pod on the back of my arm, and I feel like I can dance around and there's nothing attached to me.

For those of you who are unfamiliar with the system, there's two major parts to it. The pod, which is the insulin pump itself. The pod carries the insulin inside of it and sticks to your skin like a pump site would. It's changed every other/every two days. Then there's the PDM, which controls the pod through a wireless connection. The PDM doesn't have to be near the pod for you to get your basal. It just needs to be within communicating distance when you bolus. This is nice because when I go for a short run, I can set up my temp basal and leave my PDM at home. Or at work, I can leave it in my lunch bag and don't need to carry it around the hospital with me.

The Switch

My first step in switching to the pod was to call the company (Insulet). I explained that I wanted to try out the pod, and they sent me an empty sample pod. I wore this for a couple of days and decided to give the real one a shot. If you're currently using a competing company for pump therapy (i.e. Medtronic, TSlim), Insulet will send you a month's supply of pods with a PDM. If you don't like it, you can keep the PDM at no cost and keep using your old system. This was reassuring for me because it felt like such a big change to dive into without a safety net.

Insulet has you complete a form so that they can verify coverage with your insurance company. This is another important thing to consider before making a switch. Luckily the pods were covered at the same percentage my Medtronic supplies were, and will end up being about the same cost out of pocket every three months.

What I Like

Less Supplies: Since the pods have their reservoir inside of them, its only them you have to worry about. This makes for easier packing, storing and traveling with supplies.
Insertion: I'm not sure if it's mental or what, but just sticking the pod on and pressing a button without ever having to see the needle or hear that loud click makes it seem like an easier and less painful insertion.
Freedom: As I mentioned before, the ability to dance around without worrying about something falling off your hip is just pretty exciting after 19 years on a tubed pump. Plus, the pods have gotten much smaller since they first came out. They may be more noticeable than a pump site, especially in the summertime, but for me it's worth the extra asks and looks.

Dash System

Something else exciting on the horizon is the recent FDA approval of the Dash system for the pod. This will include a slimmer PDM that will be able to communicate with the Contour Next test kit, made by Bayer. This was the system I was using with my Medtronic pump, which is nice because soon it will be compatible with my pod system. The Dash will also use Bluetooth technology for its connection with the pod, which seems to be a precursor to more advanced technology (smartphone apps, the works).

If you've been thinking about switching over to the pod, I've say give it a shot. Worst case scenario, you don't like it and go back to your old system without having to shell out any money. If you're on MDI, request a sample pod and see how you feel about wearing it for a couple of days.



Friday, June 15, 2018

From packing to poutine and everything in between - my Quebec City adventures

If you follow me on Instagram I'm sure you know that I recently got back from a 5-day, 4-night girls' trip to Quebec City. For anyone who's never been, I highly recommend it. The sights were beautiful, the food was amazing, and the shopping was seriously detrimental to my wallet. We stayed right near Place Royal, a quaint little square with a killer breakfast cafe. Everything in the city was walking distance for us. We also took a ten minute drive to Parc de la Chute-Montomorency, a local park where the stunning Montomorency Falls are located. They have zip-lining and cable cars, and the park itself is amazing just to explore on your own.
Place Royal
Montomorency Falls


What I packed

Whenever I travel, I am nutty about packing medical supplies. Being in Quebec 5 days, I was scheduled for one site change. In addition, I brought three extra pump sites and two extra reservoirs. I brought the remainder of my Fiasp vial along with one unopened bottle. The vial of test strips in my kit was full, and I packed an extra vial of these along with about 20 strips for my Libre reader which doubles as a meter. For lows I brought two bottles of juice, three gels and of course the emergency Swedish Fish I keep in my car. I had a backup meter, a backup pump, an extra pump battery, and all the necessary chargers.

Now this may sound like a lot of supplies to most people, but believe it or not I spent a solid amount of time preoccupied about my test strip supply. Would I have enough? What if I ran out? Could you buy Contour test strips at a pharmacy in Canada? I was frustrated that these worries plagued me while I was trying to enjoy myself. I ended up having more than enough supplies, and no emergency trips to Canadian pharmacies needed to be made.

What I ate

Being on vacation calls for indulging. These means a lot of guesswork when it comes to carb counting. Throw drinking into the mix, and it's easy to see why my sugars tend to run high when I'm away. During my trip my blood sugars were primarily in the 200s. I wasn't happy about this, but I also tend to be more cautious to avoid lows when I travel. We were doing a lot of walking, which made me more hesitant to bolus too much. This is something I hope to work on in the future, especially as I grow more comfortable with my sensor. It's been especially tough getting back to work and real life because as my blood sugars level out, I am having hypo symptoms in the 100s.

What I saw - and who saw me

The beautiful views in Quebec City are endless. Whether you climb to the upper part of the city to get a full view of the Chateau Frontenac and the city below, or wander along Quartier Petit Champlain to do some shopping on the colorful cobblestone streets, your eyes are in for a treat. We sat at the Port de Quebec and got a view of the upper part of the city from below, and climbed to the bottom of Montomorency Falls after ziplining over them.

Chateau Frontenac
Petit Champlain
Since I've started wearing my Libre, I've gotten more comfortable overall with my diabetes being "out" and people asking questions. While in QC I decided not to worry about hiding my pump or my Libre. This was partially because I wanted to embrace who I am as a diabetic, and partially a social experiment. Would as many people ask me what the heck was on my arm as I am used to in Jersey?
During our five day stay, I got two asks. One about my Libre, and one about my pump. Obviously I didn't spend enough time in Canada to do a thorough experiment with a random sample and all those things I learned about in stats class. My overall feeling was that people ask more often here. Are Canadian people less nosey? Anyone from the area please feel free to comment your thoughts below.

To sum up, Quebec City was a little slice of European-style heaven nestled within road tripping distance from NJ. I had a wonderful time and would absolutely go back. When it comes to type one and trips, I think it will be a continuous battle. You can't take a vacation from diabetes. But each experience helps me grow and learn how to travel better with type one. One thing I know for sure is that I will never stop exploring. Diabetes will just have to come along for the ride.

Sunday, June 3, 2018

My Libre Experience

By now I'm sure many of you have heard about or seen pictures of the Freestyle Libre system. For those of you who haven't, here's how it works:

The system has two parts: the sensor and the reader. The sensor is itty bitty and gets inserted into the back of your arm. It stays in for up to ten days. When you want to get data, you click on the reader and simply wave it over the sensor. It gives you your current BG, along with a graph of your previous readings for as long as you've been wearing it. The reader also tells you if you're trending rapidly up or down, slowly up or down, or running steady.

Unlike the Dex or Medtronic system, the sensor doesn't automatically give you your numbers - you have to wave it to get the data. This means there's no alert system if you're about to go low or if you're creeping up. The reader works through clothing, and it has a built in Freestyle meter as well.


Journey to Libre

I started my journey, of course, with insurance issues. When I first attempted to pick up the system at the pharmacy, they told me that insurance covered none of it. This was when it first came out in the US, in the beginning of 2018. It was also VERY difficult to locate a participating pharmacy that had it in stock. After a frustrating failed attempt, I spent a couple of months on the Enlite system, as it was covered by my new insurance. I did get some good data with this, but I went through too many inaccurate readings and failed insertions. My mind drifted back to the Libre. I decided to go through the company, and let them battle it out. They reached out to my endo to get a prescription, and went back and forth between her office, the pharmacy, and insurance. The system ended up being partially covered, and the out of pocket is less than the Enlite system for me.

Bringing the Libre home was super exciting - at this point I'd heard more and more about how convenient and accurate it was, and was itching to try it out. I was especially excited to use it while running. I've been on it now for about a month, and am thrilled so far. The readings are accurate, I'm pricking my finger less, and I feel like a spy from the future every time I wave the reader and get hours of data. Not to mention I have the system decked out in gear from Pimp My Diabetes and T1D Chick. There are certain aspects of the system that I can see some people being hesitant towards, depending on their situation. Below I've detailed my pros and cons.

PROS

Accuracy: My libre is almost always spot on. I trust it, which is a big deal for me. Small discrepancies tend to happen when I'm rising or dropping quickly, like with most CGMs. 

Size: You cannot beat it in the size department. The sensor itself is roughly the size of a quarter and flat. The reader is tiny as well, even in a case. Because it's so flat to your body, it's harder to rip out on accident. 

Duration: Sensor change is every 10 days. Enough said. 

Dual meter: The reader can also be used as a meter with Freestyle Precision Neo strips. These strips are super convenient too- they're wrapped individually in foil so you can fold them up flat. I use them for when I'm running, at work, or need to carry less bulk. Then I don't have to carry my usual meter as well. 

Cost: Even with the lower rate of insurance coverage, the out of pocket still ends up lower than the Enlite for me. The original market price of the system is lower than other sensors. 

Minimizes alert anxiety: If you feel your lows and highs and aren't reliant on the alerts on the Dex/Medtronic, this can be a good option for you. I tend to have alert anxiety, in which I get alerted that I'm dropping or rising and tend to over-correct.  The Libre eliminates this for me.

CONS

No alerts: If you don't feel your lows and highs, this system may not be ideal for you. While it's easy to scan and check your BG, you don't have the peace of mind that may come with the alert system.

Not technically "continuous": Because you have to scan the reader over the sensor, the system isn't technically considered a CGM. It isn't automatic - you have to put the little bit of effort into it.

Insurance: Because the system is so new, it's less likely to be covered by insurance. Or if it is, it may not be completely covered. I anticipate that as time goes by and more people use it, more insurance companies will offer more coverage.


Bottom Line

Bottom line is, if your insurance will cover it, I highly recommend trying it out. It's small, accurate and fun to use. My coworkers in the medical field are in awe of it. Plus, it's always fun to hear people guess what the heck is on your arm. So far I've gotten:
  • A penny (this guess was from a 3-year-old)
  • A radiation sensor
  • Miscellaneous crap stuck to my arm ("Hey, you've got something stuck there")
We'll see what guess comes next...

Sunday, May 27, 2018

The Stamp of Compliance

If you're a type one, you've likely accumulated a litany of diagnoses over your lifetime. Hashimotos, celiac, lupus, the works. They pile on, accruing in your chart over the years. Maybe this bothers you, maybe it doesn't. There's constant debate about the power of labels and how one's diagnostic label can help or hurt them if they over-identify with it. But the more time I spend in the medical field, the more I notice a label that doesn't seem to yield any benefit: compliant. Or, for our purposes, non-compliant.

Over time, doctors need to monitor your diagnoses and how you are managing your health. But seeing non-compliant or history of non-compliance tacked onto a patient chart tends to create an image in a provider's mind before they even meet their patient. There is a level of judgement that inevitably occurs once your diagnostic labels include compliance issues. Much like words that we no longer use due to the negative connotation and derogatory nature they became so closely linked with, compliance is beginning to get a bit of a bad rep. Why? To start, let's look at the definition:
source: www.dictionary.com

Obeying. Yielding. Not exactly words I would appreciate being used towards me as a patient. "You must obey your diabetes regimen." I'm trying to live my best life, not surrender at battle in Winterfell. I've heard certain healthcare providers talk about a shift toward using the word adherence, which I personally think is better. The bottom line is, the word compliance has developed a stigma. To have such a strong label as a diagnostic tool on a patient's chart is a risky move. It becomes easy to say, "This patient is non-compliant. I better not get my hopes up. They're probably not doing what they're supposed to."

This label extends beyond diabetes - it applies to all chronic illnesses, whether it's ESRD, epilepsy, or asthma. It can be so easy to say, "Well, this patient's non-compliant. They don't want to care for themselves," when this may not be the case. There is another approach. When assessing patients and families I prefer to ask, "Are you able to take your medications/follow your diet/etc. as prescribed?" Asking from a place of non-judgement and not-knowing allows space for the patient to ask for help if they need it. Maybe they aren't taking their medication because their insurance doesn't cover it. Maybe they're struggling with an underlying anxiety or depression, or could just benefit from some educational counseling. Simply labeling someone as non-compliant and leaving it at that eliminates any possibility for improvement. And people living with chronic illness deserve a chance for improvement. Being stuck in a place where they are struggling to care for themselves doesn't have to be a place where they remain.

So what now? Other than adherence, what words would you prefer to have used, as a patient or as a provider? I am curious to know.

Sunday, May 20, 2018

Sleep: A Fickle Friend

My relationship with sleep has always been odd. I love sleep. But when I was a child, I had night terrors. I always needed a night light, and I still can't sleep in total darkness. I'm also a violent sleeper. My friends who've shared rooms with me say I run in my sleep, kick in my sleep, throw things in my sleep...

I wake up and the room is a mess. My stuffed animals are everywhere. My blankets are askew. Bottom line is, my sleep has never been particularly restful.

As I adjust to adulting and having a full-time job, one of the things I've prioritized is trying to get as restful a night's sleep as possible. But the more time I spend trying to get a good night's sleep, the more I am reminded of an unpleasant truth: type 1 is not at all conducive to rest. And I am not alone in this. Other T1D's feel the same, as do their family members I'm sure. How does any parent of a T1D child get a full night's rest? My mom still doesn't sleep, and I'm 26 (sorry mom).


There's many parts of diabetes that interfere with sleep. To start, the equipment. Anyone with a pump knows what it's like to wake at 3am entangled in tubing (Podders excluded). There are times when I drift seamlessly between sleep and wake, just long enough to grab my pump, roll to the side, and place it so it's not wrapped around my waist. This may not be a lot of time awake, but it adds up.

Then there's the tech. CGMs can simultaneously help and interfere with sleep, depending on the person. On the one hand, the CGM is a great tool for waking those who don't feel their lows or highs. This is essential for getting a good night's sleep - because who can rest when they're worried about dropping low and not feeling it? Those who don't feel their lows and parents of young children can more than likely rest easily knowing their CGM is there for them. On the other hand, some CGMs are less accurate than others. False alarms ringing out in the night are incredibly frustrating. There's also the risk of over-checking and over-treating - seeing a downward/upward arrow when you roll over and glimpse at your graph, and giving an unneeded correction or laying awake with worry. Much like having a cell phone in the bed, the CGM is stimulation. It is a double-edged sword.

What else?
High BG - up all night to pee.
Low BG - up all night to eat. Followed by a rebound and a wave of nausea.
Bum pump site - have you ever had to change your site in the twilight hours while still half-asleep? Not fun.

Along with all of this comes the general anxiety of just being diabetic - and trying to sleep. Whether it's worrying about lows or highs, worrying about whether a correction will work and how you'll be when you wake up, or trying to remember if you've re-stocked your bedroom juice, diabetes is not a disease that plays nice with restful sleep. Because of this, I try to get into my bed early enough that I have more than enough time to get in eight hours - since I know 100% of the time in bed will likely not be spent sleeping.