Disconnected

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I stared at my CGM, the screen reflecting my own feelings lately. ??? The 3 question marks indicating that the receiver can’t establish a reading from the sensor, that it’s confused, lost…disconnected.

The week leading up to an endo appointment has become a time of reflection. I’m forced to look back on the past 3 months and evaluate how I feel I’ve done with managing my diabetes. At my appointment, my A1c number will give objective evidence to these months, but for now, it’s my own subjective assessment.

I don’t need to see my A1c number to know that the past 3 months have not been great. I see my glucose numbers each day, each hour, each minute. I can’t escape the numbers. But the feeling that I have is hard to describe. Unmotivated? Stuck? Apathetic? No it’s not quite that. It’s more…disconnected.

How do I become disconnected from a chronic disease that I literally think about constantly? From the medical devices that are physically connected to be 24/7? I’m not quite sure. Perhaps it’s just day after day, going through the motions, hoping for different outcomes, disappointed when it’s more of the same.

Maybe I’m burnt out. Maybe I have lost some motivation. Maybe I’m just tired. But after years of going to each appointment with the same goal and continuously falling short, something has to change.

But change takes work and it’s hard. Maybe it’s changing what I eat to avoid blood sugar spikes. But I love food, I don’t want to change. Maybe it’s being better about carb counting and bolusing on time, but I’ve tried, how is this time going to be different? Maybe it’s asking about the use of drugs for type 2 that have been shown to help type 1s, but I’m nervous about the side effects and using drugs that haven’t been well studied for type 1s. But most of all, maybe I’m afraid of failing. Because what if I try, like really try, and I still find myself in this same spot 3 months from now? What does that mean for my future? What does it mean when I’m ready to start a family and need to get my A1c much lower than where it is now? What if I can’t do it?

I know that I can’t let fear hold me back, I know that I can’t be afraid to try. And that “failing” isn’t really failing at all, it is just a lesson on what will work for me and what won’t, all ultimately getting me closer to my goal.

Hopefully my endo can help me rebuild these connections and face my fears. All I know is that I won’t succeed unless I’m willing to try.

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Diabetes Blog Week Day 4- Healthcare Experience

Diabetes Blog Week

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? 

Oh man, I don’t even know where to begin. I’ve had so many awful experiences with doctors, offices, insurance companies and pharmacies. I can’t forget about the Epic Letter of Complaint that I wrote and sent to a former endocrinology office. Or the more recent Insurance Frustrations I’ve dealt with that are all too common.

Unfortunately I have yet to have a doctor and office where I felt like I consistently received competent, respectful, helpful care. Some visits and doctors have been better than others, but on the whole, there is much room for improvement. In fact, at my last appointment, the doctor forgot to check my A1c! We’re talking lack of basic diabetes care here.

So I’d like to invite you to my imaginary endocrinology appointment, an idealistic appointment where I get the exact care and consideration that that I as a patient and person deserve (and you know, a few extra perks since this is my fantasy appointment after all).

Receptionist: Good morning Reva, you’re here to see Dr. Rainbow?  Please have a seat in the massage waiting chairs, the doctor will be with you in a just couple minutes. She is actually running ahead of schedule this morning.

Nurse: Hello Reva, come on back with me. I can take your pump, dexcom, and meters from you. We’re going to download all your numbers and information and use a software that graphs them together. Do you use any additional apps that we can also incorporate the information? Any fitness or food tracking apps? With this integration, we can get a better idea of how exercise is affecting your blood sugars and if your carb and insulin ratios are adjusted for the foods you eat and when you eat them.

Now we’re going to check your A1c right here in the office with a simple finger poke. We know how annoying it can be for you to have to go to a separate lab early in the morning before work and before your appointment to get your blood drawn to check your A1c. And then have the lab forget to send it to your doctor so it isn’t there when you arrive for your appointment. We wouldn’t want that to happen to you.

You’ll be in exam room 2. It looks like the doctor is ready for you now.

Doctor: Hi Reva. I wanted to let you know that all your prescriptions are up to date. We were contacted by your pharmacy that your insulin prescription needed a refill. So we took care of that and it should be all set when you’re ready to order more.

So, how do you feel things are going? I have your graphs up on the screen and I can see some places that we can make some small adjustments. But before we go into that, do you have any specific questions or concerns  you’d like to talk about?

Our nutritionist is in the office today if you’d like to meet with her after we finish. Now let’s take a look at your graphs. Your A1c is looking good, good work on improving it since our last visit.

I also wanted to see if you’d be open to talking about or trying different brands of insulin or other medications that have been approved for use with type 1 diabetics to see if we can get your numbers under tighter control. What I would hate to have happen is to not talk about other options that exist, since treatment of type 1 diabetes has progressed over the years. We pride ourselves at this office with keeping up to date with the latest research, technologies, and treatment options. You deserve the best care that we can provide and we will work together to make sure you get it and reach the goals that we’ve worked together to set.

Is there anything else that you’d like to cover that I may have missed today? I want to make sure that you feel like you got the most out of this appointment and feel comfortable with your changes and next steps. Great.

Well, I look forward to seeing you in 3 months. If you have any questions over the next few months, please don’t hesitate to call, email me, or use the patient portal to communicate and I will personally respond within 24 hours. I would hate for you to have to make multiple calls and wait days to get a simple answer from me.

Have a good rest of your day and keep up the good work!

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Diabetes Blog Week Day 3- Language

Diabetes Blog Week

Today’s topic:  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?

 

“You’re not diabetic. You have diabetes.” This is what my mom used to say to me back when I was first diagnosed. I was 12 years old. Honestly at that time, that distinction wasn’t that important to me, or maybe I just didn’t understand the difference. Today, I use the phrases interchangeably, although I get why my mom made the distinction. She didn’t want me to define myself by my diabetes. It was something that I had, not who I was. But while I don’t feel limited by my diabetes, it is a big part of who I am however I say it.

That was the first time I really thought about the nuanced language we use to talk about diabetes. But it wasn’t the last.

It was a few years ago. I was at my endocrinologist’s office for my appointment. My doctor had left the room briefly for something and my chart was open in front of me. I peeked over to see what was on the screen and I saw it: “diabetes mellitus type 1, uncontrolled“.

Uncontrolled?! Who, me?? The person who tries every day to manage my diabetes? The person who is constantly carb counting, correcting highs, and treating lows? The person who is always thinking about diabetes is uncontrolled?! What?!

It was such a slap in the face to see those words on the screen. I was sad and angry and confused. I felt like I had been incorrectly labeled…and judged. I felt like I wanted to write a paragraph explanation next to that word for whoever might read it. Why couldn’t it say something like, “Engaged patient, making progress, but room for improvement”? I know now that what I saw was part of the ICD-9 codes for billing purposes. And yes, at the time my A1c may have been higher that I’d like. But the fact that my struggles and effort of living a normal life with such a challenging chronic disease had been reduced to that single word was demoralizing.

I’ve since checked the codes that my doctor used, and I haven’t seen uncontrolled used again. But I’ve never been so angered and hurt by a word used to describe me and my diabetes. Even though I wasn’t necessarily meant to see what was written and it wasn’t a word that my doctor ever used directly with me, it demonstrated the power a single word can have and how important it is to be cognizant of the language we use when speaking about and describing diabetes. You never quite know the effect it may have.

Diabetes Blog Week Day 2- The other half

Diabetes Blog Week

Today’s topic: 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?

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I’ve experienced all the emotions above as well as many others. I have good days where I feel proud of my blood sugar control, encouraged by the support that I receive from my family, friends, and online, and optimistic about the future. And I have bad days where I feel frustrated by my roller coaster of blood sugars, tired of having to constantly think about and manage my diabetes, and fearful about future complications. And sometimes when the emotions get to be too much, I become indifferent and burnt out.

What helps me when I find myself in a funk is to have outlets where I can essentially vent. I know that when I blog about my frustrations, that I’m not alone, and that others have been there too and got through it. When I talk to friends and family, they may not completely understand what I’m going through, but they validate my feelings and listen to what I have to say.

Finally, there are 3 phrases or mantras that have really helped me find perspective and get through tougher times.

You can find more The Other Half of Diabetes posts here.

Diabetes, Filters, and Reality

I am fascinated by fashion and lifestyle bloggers and Instagrammers. I’m talking about the beautiful women and sometimes men who are dressed immaculately, hair and make-up perfect, with gorgeous houses that are beautifully decorated down to the tiniest detail. They post stunning pictures of their morning coffee next to fresh flowers from their trip to the farmers market, their children or pets perfectly posed, babies smiling and always looking adorable, food that makes your mouth water, and views of places that make you want to get in the car and drive there.

I am envious of them and their seemingly perfect lives. Their posts in many ways make me want to be them, or hell, just be friends with them. Their pictures and post present this shiny picture of life filled with beauty, smiles, and a sense of optimism. They are pinterest come to life.

But I know what I am seeing is not reality. Because what we don’t see are the 56 pictures that were taken to get that one perfect one. We don’t see the baby throwing a fit before finally settling down for just long enough to snap the picture before then spitting up on her adorable, probably hand-sewn dress. We don’t see the 20 minutes of staging that breakfast picture, getting the lighting and angles just right as the coffee turns cold. And we don’t see the mess that is hidden out of view.

But we aren’t supposed to. These lifestyle bloggers are selling us on this image of reality, one that is carefully cultivated. Real life is not that neat and perfect. I’m sure even the best lifestyle blogger has a bad day, but we wouldn’t know. Not unless they told us. And that’s okay, because I and countless others enjoy seeing these pictures and posts, imagining a life that is different from my own.

Anyone who uses social media or blogs is in essence creating a version of reality. What we choose to share and not share all help paint a picture of us and our lives to our viewers and readers. When I started this blog, I wanted it to be as close to reality as I could. To me, sharing the difficulties, fears, and frustrations is just as important as sharing the triumphs. It would be impossible to begin to understand what it’s like to live with diabetes without sharing the good, the bad, and the ugly. But even then, I do think about what exactly I am sharing.

filterBut what would a filtered view of diabetes look like? I had some fun imagining an Instagram filter of my CGM where the filters would allow you to take the reality of a crazy day of blood sugars and choose a different story to tell. For example, the stabilize filter showing a day of in- range blood sugars.

But it’s not my reality. And it’s not a story that I’m interested in telling. I want people to see the mess, because most likely, they have messes too. I want people to see my imperfections, because we all have imperfections. I will continue to fantasize about the lives portrayed by the fashion and lifestyle bloggers, but my diabetes is and will be filter-free.

 

 

 

 

 

Can I have a re-do?

I often dread my endocrinologist appointments. But at the same time, I’m thankful for the 4 appointments each year. They’re forced moments of reflection, confrontation, and adjustment. Before each appointment, I consider how things are going. I know if the past 3 months have been good or bad. If it hasn’t been a good 3 months, it’s a time to confront myself and delve into why my numbers have been high or low or just all over the place. Sometimes it’s my own self-management habits that have slipped, other times it’s factors that are out of my control like getting sick. Then based on how things are going, I make adjustments along with my doctor and move forward.

Today was one of those appointments that I just wanted to get over with. The past month and a half has been rough. My numbers have been running high consistently. Between getting a pretty horrible cold that lingered, having to go on steroids for the sickness, stress from a breakup, adjusting to time changes of traveling, and then just a weird couple weeks where it seemed like my insulin wasn’t working as it normally does, I knew my doctor would be looking at some pretty awful numbers at our appointment.

Part of me is disappointed. I don’t like to be this off track. I don’t like knowing that I’m potentially doing lasting damage to my body, that I’m increasing my risk of complications. But I also know that life happens. There’s a lot that I can’t control and those events may unfortunately impact my health by way of my blood sugar. All I can do is my best to try to manage the consequences.

Diabetes is a chronic disease. It means that as of right now, I’m stuck with it for the long haul, it’s not going anywhere. And as much as I get caught up in these mini 3 month sprints between appointments, there’s a bigger picture. Three months is not very long when you look at a lifetime. And shit happens. There will be highs and lows in life just as there are in my blood sugar. I admit, I’ve had other things on my mind lately besides my diabetes and I’m sure that’s played a part. But I can’t control everything that happens, at some some point you have to let go and just do the best you can within your circumstances.

So yea, I’m not thrilled about this appointment and the past few months. But unfortunately there’s no re-do’s or rewinds with a chronic condition. What’s done is done. Now, I’m putting aside my excuses and focusing on moving forward.

 

A day in the life

Some days I’m surprised I get anything done with how preoccupied I am thinking about my blood sugar.

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Insurance frustrations

bubbleDuring the time that I was on my parent’s insurance, I was pretty much removed from the entire billing and insurance process. I was lucky in that my dad took care of the paperwork and the phone calls. I lived in my nice little naive bubble where all I worried about was going to my appointments, ordering my supplies, and taking care of my health. I didn’t worry if a certain device or procedure was covered by my insurance, everything just magically worked out. Oh what wonderful times those were.

Then I got a job and my beautiful bubble popped.

I know that I’m very fortunate that my job even offers insurance and that it has pretty good coverage. However, if you ever want to simultaneously raise your blood pressure while feeling like you want to bang your head against the wall, try calling your insurance company to argue a claim.

Take a few weeks ago as an example:

It all started with an email notification that I got that a new claim was available to view online. It was about my most recent routine appointment with my endocrinologist. I followed the link to an EOB. I feel like I should be able to say that I speak “Insurance” since it often feels like I’m reading a foreign language while trying to decipher what is being said. I noticed that the entire bill was higher than the past 2 appointments. Scanning the paper, I found a tiny number leading to the appendix with the following text:

Our payment policy limits the number of times this procedure is allowed and that limit has been met.

Ummm huh??? I went back up to see what billing code this was referring to, thinking perhaps it was some unnecessary test or blood work that I may have unintentionally duplicated.

GLUC MONITOR, CONT,  PHYS I&R 95251

Like I said, a foreign language. But whatever it was, I was being charged the entire amount of $120. But if it has to do with glucose monitoring, it probably is necessary. I called my insurance company. The woman explained that the billing code that the limit was referring to was 95251 (side note: I did some googling and this particular billing code can range from $35-$350!). With some simple googling I determined this billing code was referring to the following:

95251: Ambulatory continuous glucose monitoring of interstitial tissue fluid via a subcutaneous sensor for a minimum of 72 hours; interpretation and report.

Essentially it’s downloading my CGM and interpreting the numbers. At this point I was starting to get both confused and angry. I checked the EOB. I was also charged for an Office Visit so it’s not like it was the only thing they were billing for. But the part I was getting angry about was that downloading and interpreting my numbers is really all my appointments are since checking my a1c and blood work happens at an entirely different time and facility.

I called back the insurance company, asking what the limit of visits are for that code: 2. I attempted to calmly explain that the standard of care for a type 1 diabetic is seeing their endo every 3 months, so 4 visits a year. How could they only be covering half of them?!?!

The insurance woman explained that I’m going to need my doctor to call the patient management team at the insurance company and get the additional visits pre-certified ahead of time for them to be covered and additionally to appeal the charges from the last visit.

Ugh. Really??

At this point I’m just annoyed. But I’m more annoyed at the idea of having to pay so I call the health system starting with their billing department. After explaining the issue, I was told that the doctor will have to call and that it’s something that the billing department can’t take care of. Okay fine.

I call the doctor, the receptionists says I should talk to billing. No, billing said to talk to the doctor. At this point I’m ready to hit my head against the wall. My doctor is not available so I leave a message explaining the entire issue. The receptionists assures me she will deliver the message.

A week goes by. No response.

I call back. The person on the phone looks at my file. He tells me that it looks like it was seen and sent to billing. The person on the phone offers to have someone from billing follow up with me. Yes please.

I wait.

A few days pass and I finally get a message from someone from Billing. “I see the message in your file,” she says. “It looks like they’re talking with someone at the insurance company. I can call you back when I know more.”

Ughhhh.

A few more days. “It looks like they are taking off the charge for your most recent appointment.” “That’s great,” I respond “but what about the future appointments? I have one coming up in a few weeks. Are they going to charge me again? The whole point was to get them pre-certified.” “Oh ummm, well I can tell them to look at the September appointment. You’ll have to call ahead of time for each appointment and tell them to contact the insurance company.”

Are you frickin kidding me?!?! Why is this so circular?!?! I thanked her, not sure exactly what was accomplished besides not being charged for the most recent visit. However, the fact that it took almost 2 weeks does not give me much hope if this is the process I’m going to have to go through twice a year, every year!

The funny thing is, I would consider this a successful encounter compared to some of the other arguments and conversations I’ve had with the insurance company. But it’s amazing to me the number of phone calls it takes to accomplish even the simplest task. Working in the health care field and having a masters in public health, I consider myself to be more knowledgeable than perhaps the average person in navigating the health care system. And if I found this process to be arduous, I can’t imagine that many people with much less knowledge are being successful in their efforts.

If anything, I’ve become a much more assertive person through this process, but really I just wish that the whole system was fairer and simpler for everyone.

 

 

 

 

 

2015 Diabetes Blog Week Day 2- Keep it to yourself

Diabetes Blog Week

There’s one aspect of my diabetes that I’ve kept hidden, hidden from the Internet and online community, hidden from my friends and family, and in many ways, even hidden from myself. What have I hidden for so long?

My fear.

When I started this blog over a year ago, I stumbled on a blog post from Six Until Me from a couple years ago about PostSecret. Kerri asked her readers, “What would be your PostSecret submission?” A lot of people responded with different “secrets” that they had, but one really struck me. This anonymous poster’s secret is my own biggest fear, one that until now I have never told anyone.

“I feel that despite my best efforts, I will still end up suffering with complications, and I will have to live with the guilt of feeling like I did it to myself.”


This is probably the biggest internal struggle that I have. I know that keeping my blood sugar in control now will help me to avoid future complications. This is not a hard concept for me to understand. Yet, my A1c is consistently higher than I want it and higher than the recommended number to avoid complications. So the obvious answer is, lower it! Get it under control! It seems so easy, but it’s not. Every single day presents the struggle of keeping my numbers in range. Every. Single. Day. I have good days and I have bad, but I am trying.

I often wonder if I am too late, have I already done irreversible damage to my body? And who will I have to blame except myself if something does happen? Even with good control, it’s still quite possible to develop complications as I have read from other diabetic’s experiences. Then what? How do I explain that? How do you avoid the guilt and the blame and the “could have’s”? I know that I would be saying to myself, “you could have prevented this, you could have done more, you could have done better.” Maybe that isn’t true though.

In many ways I’m afraid of the future. But I hide that fear among my hope and optimism. I bury it under the long list of things that I have to do each day to manage my diabetes and live my life. I know that I can’t live my life in fear, I have to just live each day the best that I can and cross each complicated bridge when and if I get there.

This post is part of the 2015 Diabetes Blog Week. Today’s topic: Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?

When life hands you lemons…

My sister recently found out that she may have Celiac Disease.

As directed, she has completely cut gluten from her diet. While more and more gluten-free options are becoming available both in restaurants and grocery stores, it’s still a diagnosis that comes with its own set of challenges. I’ve watched her as she’s adjusted to this major lifestyle change. I’ve watched her grapple with finding something she can eat on a menu, watched her reluctantly turn down food at an event, watched her patiently pace the aisles looking for the gluten-free options or alternatives to her favorite recipes. It hasn’t been easy, but she has risen to the challenge with tremendous strength, discipline, and optimism.

I truly admire how she has stayed so positive despite having to give up or modify so many of her favorite foods. How she’s taken on the added responsibility of checking every food label and having the discipline to turn down what she knows she can’t have. How she’s gone from having the freedom and ease of choosing essentially any food to having much more limited options. Through all this, she’s faced this change courageously, head on, and hasn’t let it get her down.

I admire what she’s had to do even more because I’ve been so reluctant to make my own dietary changes even though I know it would help me. While I know that she doesn’t really have a choice if she wants to avoid doing damage to her intestines, she still doesn’t complain. I know I should eat less carbs, I know I should cut back on sugar. I know it would help tremendously to stabilize my blood sugars, to lessen my insulin intake. I know it would benefit my overall health, but I haven’t made those changes to what I eat.

I look at what she’s doing and I find it inspiring and motivating. It hasn’t been easy for her, but she’s doing it and using it as an opportunity to grow. As she said to me, “I think of it as a challenge, as a way to stay healthy, learn new foods I might not be used to eating, and definitely learn to cook better with the foods I can eat.” In many ways she’s given me hope that when I finally decide to make (less significant) changes, that I too can do it. And with so many people with both type 1 diabetes and celiacs successfully balancing both, I know that when I’m ready, I will have plenty of resources and inspiration within the DOC too.

No one asks for these types of challenges. Whether it’s balancing blood sugars on a daily basis or completely eliminating a protein composite from your diet, life is full of obstacles. It’s how you approach them that makes the difference.

I’m lucky to have such motivating, positive, and strong role models in my life. People who when handed lemons, they make amazing gluten-free lemon bars with almond crust!