Category: Management &amp; Care

General, Management & Care

(Originally posted at My Diabetic Heart.)

So, last week I had my first appointment with an endocrinologist. For the last six and a half years, my diabetes care has been overseen by my primary care doctor, but due to some struggles I’ve had and changes that I wanted to make, we agreed it was time for a referral to an Endo. Initially, I was excited about the change, but as the appointment grew nearer, my nerves got the better of me and panic set in. I was Expecting the Inquisition.

Well, I survived that appointment. In fact, it went much better than I feared it might. I do have some reservations about it, but I’ll get to those in a bit. First, the good parts.

Doc D. is a young guy, maybe 34 years old at most. I’m 31, so we’re close in age. He was attentive, listened, and took the time to get to know me and my situation. He asked a lot of questions and documented my responses as we went along. I appreciated how thorough he was, and the fact that he took the time to process my information and put his recommendations in writing before he tried to explain his thinking behind them.

He revised my meal time insulin regimen, giving me a coverage plan that is more logical and better suited to my needs. That should help a lot. He left my Lantus and Victoza doses alone. He also prescribed the oral type 2 drug Jardiance for me to try, and suggested that I add a coenzyme Q10 supplement to help strengthen my heart and increase my energy levels.

Doc D. also said he wants to check my pancreas output with a c-peptide test. He was a bit surprised that I’d never had one. And since he was ordering tests, I requested that he order GAD65, IA-2, and insulin auto-antibody tests while he was at it. I practically begged my PCP to run those tests, but they were never done. Now, they will be. So, I have that bloodwork to look forward in two months.

He took his time and didn’t rush through the appointment. That was huge in my mind.

And…. AND…. There was no mention of my weight at all. Let that sink in for a second… The doctor did NOT focus on my weight at all. I’m really not use to that. I was honestly kind of shocked.

His focus was more on nutrition. Eat better, the benefits will follow. Hey, I agree with that logic. I know it works. But the means of getting there are where some of my reservations begin.

Doc D. is something of a paleo diet evangelist and strongly “encouraged” me to adopt that diet and to severely restrict my carb intake. He wants me to give up a lot of things that I’m just not sure I’m willing to ditch completely. I have a real problem with having to deprive myself of the things I love, and I have no desire to go back to starving myself like I did for months after I was diagnosed. While the results at that point may have been beneficial for a while, it ultimately lead to a major crash and burnout. I don’t need that again. I’m willing and wanting to make some changes, but I’m not sure the paleo diet bible is one that I’m willing to thump. And I’m certainly not going to be beaten over the head with it.

The other major reservation that I have concerns the drug Jardiance that I mentioned above. I had never heard of it, but through some research I’ve learned that it’s basically Lilly’s version of Invokana. It’s an oral type 2 drug that is supposed to help my body dump excess sugar when I take a leak. I’ve heard mixed things about that class of drugs and I’m incredibly leery about starting it.

I have two issues with this. One, yeast infections are listed as common side effect of this medication. If you’ve read my story, you know that’s what lead to my diagnosis in December 2008. It’s understandable that I wouldn’t want to venture down that road again. Secondly, do I really need another medication on top of what I’m already taking to treat my diabetes? I’m already taking Victoza, Humalog and Lantus. I think that’s enough. And I’ll spare you a rant about the additional monthly cost of that medication and the CoQ10 supplement.

So overall, the appointment went well. I have some strong reservations about some things, but there were some really positive things that came out of it. I’ve got some clearly defined goals to work on as far as my A1C goes, a better insulin regimen, a new supplement that seems to be helping to boost my energy, and hopefully a doctor who will be the same at the next visit as he was at the first. He listened, he was thorough, and didn’t leave me feeling judged. I see him again in September.

Time will tell.

Two T2s Discuss the Freestyle Libre – 659

Dear friends, Phyllisa (at Diagnosed But Not Defeated) and Sue (at Diabetes Ramblings) were recently together at HealtheVoices18 and discovered that they both were using the Freestyle Libre. They teamed up to give you our opinions on the device.

How long have you been using the Freestyle Libre?

Phyllisa: Since April 2018

Sue: December 2017

What do you like about the Freestyle Libre?

Phyllisa: I like the graph charts the most as it gives me detailed information about my blood sugars.

Sue: Having the graphs allow me to see how my body reacts to different foods and activities over time. It also helps me understand what my glucose levels do during times when I would be unable to poke my finger.

How has the Libre affected your diabetes management?

Sue: As a busy mom and teacher, it’s hard to remember to check my numbers. I love being able to check my blood sugar without the time and hassle of a traditional glucose meter. I can check while teaching without missing a beat. The graphs also help me understand how my body reacts to different foods and activities.

Phyllisa: The libre has had a positive impact on my diabetes management. It allows me to be more in control of my diabetes management and it gives me the opportunity to check my blood sugar multiple times a day, if I want, and not have to worry about the cost of test strips.

How do you explain “that thing on your arm” when asked?

Sue: If I’m in a silly mood, I’ll either say it’s a popsocket or that I’m part cyborg. I love seeing their reactions! Most of the time, though, I’ll explain that it’s a glucose sensor and show them how it transmits to the receiver. When my young students ask, I explain that our bodies turn food into a special type of sugar for energy and that sometimes my body doesn’t use that sugar correctly. The Libre helps me determine how much sugar is in my blood.

Phyllisa: Sometimes I say, it’s related to diabetes. Other times I say, it’s a device that communicates with my pancreas. It all depends on how I’m feeling in the moment and who’s asking. I once had a six-year old kid ask and I told her that it was my way of checking in with my pancreas, an organ in my body that isn’t working properly. This device helps me feel like a superhero.

Any comments to others who are interested in trying it?

Phyllisa: I would check with your insurance company and see if it’s covered fully or how much they will cover. Make sure it is within your budget and it is, then I strongly recommend it. I wouldn’t throw away your glucometers, however. You will need them in between sensors and you may want to compare readings from time to time.

Sue: If it’s within your budget, I’d suggest giving it a go. The graphs and ability to test multiple times per day have given me great insight into my own diabetes. Thankfully the Libre also has a spot for test strips so you can test with a finger stick if you don’t feel the same as the reader reports.

If you could suggest any changes to Abbott about the Libre, what would they be?

Sue: The adhesive area needs to be a little stronger. My current sensor is loose on one side, requiring the use medical tape to hold it down.

Phyllisa: I would extend the adhesive area because I’ve had two sensors come off because the adhesive stop sticking. I think a wider area would help.

Disclaimer: Neither person was provided a Freestyle Libre nor were they asked by Abbott for their opinions on the product or compensated in any way. They are real patients who chose to use this device and wanted to share their opinions.

Let’s Talk About Complications – 501

A couple of years ago I had the opportunity to participate in a virtual summit with some members of the DOC. When I received the invitation from Scott Johnson to join him and some people involved in Pharma and social media, at first I wasn’t sure I would fit in the group; there was to be a discussion about Diabetic Neuropathy and my reaction was “Well, I don’t have that… What kind of input could I possibly give?” —But I said yes, anyway; the conversation was eye-opening and it left me with a lot of bittersweet feelings.

I was rather grateful to be able to say that I’m free of complications, and then it hit me. Just because I’m complication-free now, it doesn’t mean the future doesn’t hold any challenges. And how well informed am I about these complications? I wouldn’t put myself in the completely ignorant category, but I’m definitely very close to it. What I know is very vague, very superficial, and usually tainted by the sensationalism of the media. Nobody wants to learn about diabetes and what it can do to your body when the first thing you see is a horrendous photo of a sick foot that most probably needs to be amputated. That’s fear-education and I avoid it like the plague. The sad part is that at some point I end up avoiding it ALL.

How many of us can say that, unless we get diagnosed with something, we actively go and look for information on a certain condition, especially a complication from diabetes? I certainly can’t! I go for my eye exam every year and I’m all happy when the doctor tells me my retina is the most beautiful thing he’s ever seen, and I leave it at that. I don’t worry about it for another year because I’m almost convinced that I’m doing all the right things to control my diabetes. After all, no complications means good control. Ummm… No, not really. We all have different bodies and this is what we were talking about last night. Some people can spend years without paying attention to their blood sugars and develop no complications. Some others can pay attention to every single thing they do and still get them.

And that is why we all should be open to:

1) learn about complications
2) talk about complications
3) approach it from an educational point of view
4) discuss it like patients, not like pharma, doctors or the media

How do complications of diabetes make us feel? What would happen if we got one? Are we prepared? Do we know how to recognize symptoms? Let’s put neuropathy as an example. I was one of those people who thought neuropathy = pain. I was wrong. It turns out I could have diabetic neuropathy as of this very moment and be completely unaware of it. Why? Because the symptoms are vague and can be related to many other conditions. Orthostatic hypotension? I have that… and it’s a symptom! Yes, quite shocking. It may not be neuropathy, but at least now I know I should pay more attention to the things my body tells me.

So, the same way we advocate for finding a cure and talk about our rights, we should be working on discussing complications openly to get rid of the stigma created by the media and other misconceptions. Knowledge is power. Shared knowledge is power.

BG Testing… 1, 2, 3 – 495

Originally posted on Diabetes Daily.

The first time my endocrinologist told me I was doing so well managing my blood glucose levels, I only needed to test them 2-3 times a week, I laughed… hard… I looked at him with a big “REALLY?” stamped on my forehead. He assured me it was okay, so I thought it was okay.

Guess what? It isn’t okay!

In 2008, I worked for a company that sold diabetes supplies and delivered them in the mail. While I tried to appreciate the experience for what it was, and did my best to keep my compassionate and caring attitude toward the customers, I got burned out pretty quickly. Among the many things that made me unhappy about that job was the absurd insurance companies’ policies when it came to the limit on test strips.

Insurance companies in general oversimplify something that isn’t simple at all. Their perfect equation goes something like this: you use insulin, you test 3 times a day; you don’t use insulin, you test 1 time a day. And good luck with that! Forget the highs and the lows during the day, and just guess what your food can do to your glucose levels before you put it in your mouth. Easy, right? No.

I speak from the perspective of a person with type 2 diabetes who doesn’t use insulin. Most of the time, I’m just praying to the gland gods to behave when I eat. Many times I don’t even pay attention and have the negative thought train about dying any day, anyway, so why bother? And you know why that is? Because I was told it was OK to test only 2-3 times a week… so the rest of the time I’m completely oblivious.

It’s really hard to get into a blood glucose testing routine when you’re advised to do it so randomly. If you choose to stick to that necessary routine and use more test strips, good luck paying for them out of your pocket. I’ve gone without testing for long periods of time, mostly as a personal choice (irresponsible choice, I may add), and let me tell you that not knowing your numbers isn’t a good thing. Especially when you rely on food choices; sometimes even the healthy stuff may play a bad trick.

So, how do you know? By testing your blood sugar more often!

If you’re not testing often because you believe that people with type 2 diabetes shouldn’t test that often, consider talking to your doctor about increasing the amount of test strips in that prescription. Knowledge is power. It’s frustrating not to know where you’re going to land when you jump. And testing often does help you make better choices.

New Doctor Blues – 276

Diabetes & Emotions, General, Management & Care

This is one song I think most people with diabetes know.

My primary care physician, who I really worked well with, left the clinic at which I saw her. My understanding is that she’s looking to start a new clinic, but in the meantime I have to see another doctor at the same clinic. If I like him, I’ll probably stay with the clinic, which is a good fit for me in several ways.

My first appointment is tomorrow morning. I’m somewhat nervous. In fact, I’m double-nervous: I have diabetes-checkup nerves AND new doctor nerves.

I’ve got the normal pre-appointment jitters about the normal stuff. What will my numbers be like? Will I need a change in treatment plan? Has all the walking I’ve done helped with the HDL cholesterol? Will I get a good answer to the question I hope to ask?

But the new doctor brings a different set of worries. Will I like him, and will he like me? Will I feel like his next appointment is more important to him than I am? Will I be judged for my obesity? Will I be judged because I don’t test often enough? Will he be open to my desire to participate in treatment decisions?

To be honest, the new-doctor worries actually weigh more heavily upon me than the pre-appointment worries. If the appointment goes well, I’ll feel good about staying with that clinic. If it goes badly, I may be on the hunt for a new clinic to go to.

I don’t much care for “The New Doctor Blues”. I sure seem to know the words, though.

We All Hate the Word “Compliance” – 483

Diabetes & Emotions, Management & Care

Compliance
noun | com·pli·ance |
: the act or process of doing what you have been asked or ordered to do
: conformity in fulfilling official requirements
: a disposition to yield to others

Keyword being ordered. Really? You gave me an order? Do doctors give us orders or recommendations? I prefer recommendations. Maybe I’m a rebel, maybe I question authority more than I should, maybe I’m adult and I only follow orders from my boss—and sometimes from my Mother. Who knows… but the word compliance has been thrown at me so many times by my primary care doctor, and it only adds to another fancy word we love in the diabetes world: guilt. I don’t like the word compliance when it comes to my diabetes; the doctor tells me I’m not compliant and I feel like I’m going through disciplinary action.

But why do we hate the word compliance so much? A few guesses for me…

Managing diabetes involves so much more than following a bunch of instructions from your doctor. Of course they know what you’re supposed to do, they went to school for that crap! I respect my doctor, and her knowledge, but when she talks to me like I’m a robot… that is not cool. I’m not a kid, stop telling me I didn’t do my homework correctly.
If you deal with not only one, but two or three (or more!) chronic conditions that require day to day tasks, it can get pretty overwhelming. Sometimes you forget your medication, sometimes your life is so hectic you don’t prioritize too well, sometimes you just want to say eff it. Or at least that’s what happens to me. Is it good? Nope, but hey… sh*t happens.
Depression, especially the clinical one, makes you not care… not one single bit. You’re down in the dumps and taking care of yourself is at the bottom of your priority list. You feel like you’re going to die anyway, so why bother. So asking about mental health should be the first thing any doctor should do with a patient that requires a constant regime for any kind of condition.
It’s not that we don’t want to do the right thing. DIABETES JUST SUCKS! So the doctor telling me I’m not compliant leaves out the fact that 1) I’m a human being, not a machine; 2) I’m not perfect; 3) I’m freaking tired of poking myself; 4) I just want to feel normal without all the hocus-pocus.

So no, it’s not only about following orders, or fulfilling requirements. The emotional component of diabetes makes it way more complicated than that. And like my good friend Bennet would say, your diabetes may vary. A set of rules and regulations for conformity, which I associate with the word compliance, is not what we need. We won’t conform… it’s not that easy. I want my doctor to work with me on a plan that works for me. I want my doctor to ask me how she can help me achieve my goals, not hers.

Because I don’t want to be compliant… I want to be successful!

Denial isn’t a river in Egypt – 310

Diabetes & Emotions, General, Management & Care

“A slave that acknowledges its enslavement is halfway to its liberation.” –Mokokoma Mokhonoana

As I sit to relax after eating a healthy lunch (green peppers stuffed with a mix of brown rice, chicken and veggies) I’m thinking why don’t I eat like this more often. In fact, I’m here thinking what happened in the past few months to make me completely derail from everything a person with type 2 diabetes should do in order to be healthy.

2013 has been hectic. For almost a year I was working two jobs so I could afford health insurance (see the irony?). My schedule was so crappy, I ate whatever was available, which means there were a lot of late night shifts that ended at the BK drive-thru. Decent sleep hours became a joke, so don’t ask me about exercise. My routine got completely screwed up, and I won’t get the award for taking my medications on time. Now my jeans feel tighter, you do the math. I feel tired which means my thyroid is angry. So it hasn’t been a good year for my diabetes management.

About a month ago my life changed for the better when I was offered a wonderful position at the college where I work. Now I have a regular week day, first shift, full time job. That certainly gives me time to plan things and take care of myself, but it’s taking me a while to get back on track.

The first thing I did was reassess my health and realize I haven’t seen my doctor since the beginning of May. My last A1C dates from March. I don’t remember when was the last time I tested my blood glucose levels because I ran out of strips, and the doctor will want to see me. But for a month I’ve been afraid to call and make that appointment… I am almost 100% sure my numbers will make her eyes cross.

Because taking my metformin has been rather an irregular thing, now that I’m taking it every day, as many times as required, my stomach is all messed up and I find myself cursing the diabetes demons. And while trying to decide how to soothe my poor stomach, I was thinking if I need a medication change, if it would be better to manage my blood glucose levels with insulin or if there will soon be a magic cure. Truth is, all I need to do is get out of denial and do what has always worked for me.

This is the story of my life. The story of the life of a person with type 2 diabetes. Especially one who doesn’t live on insulin. It’s homework every single day. Every decision affects our numbers. And the guilt paralyzes us.

I made my appointment with the doctor this morning. I know it won’t be pretty, but I ran out of excuses.

Don’t be a victim – 463

The word “victim” never entered my vocabulary when it came to my life with diabetes. Why would it? Sure, it isn’t great luck that I developed type 2 but, other than genetics, no one “gave” it to me, so how am I a victim? Well, yesterday the light bulb finally went on over my head. You see, yet again, there was an uproar in the diabetes online community revolving around a “joke” that inferred that soda causes diabetes; that sugar causes diabetes. Immediately, the type 1 community was up in arms defending their disease, including a high profile singer who has type 1. I don’t blame them at all! The “joke” was insulting, wrong and does nothing but perpetuate harmful myths about diabetes. The perpetrator of this kerfuffle was quick to point out that they weren’t referring to type 1, only type 2. That just made it worse. Due to the high profile singer, the story was picked up by several news channels and magazines. When the difference between types was discussed, video of overweight Americans were shown to indicate type 2. <sarcasm> You see, apparently, only fat, lazy people develop type 2. They are the ones who are guzzling soda and should stop. </sarcasm>

I can’t tell you how tired I am of trying to stop the hurtful, always inaccurate myths surrounding type 2 diabetes. It’s like canoeing upstream without a paddle. It feels like David against Goliath without a stone. It’s akin to removing a snow drift with a spoon. It’s nearly impossible. I’m not here to bust any myths. I’m not here to correct the inaccuracies. I’m here to tell you that you need to stop being a victim.

The stigma that is attached to type 2 diabetes is doing huge amounts of harm in our community. We are made to feel as if we did this to ourselves (we didn’t). We are told that we just need a little self-control, to stop eating junk, and we’ll be cured (bunk). Those types of mainstream thoughts not only keep people from making donations to diabetes research funds but it makes those of us with this disease feel awful; feel less-than; feel guilty. People who feel that way may be less likely to take proper care of themselves. Why bother? It’s my fault, right?

Stigma is bullying. Cowards who hide behind their computer screens and sling ugly comments to people who are struggling with a disease that they didn’t ask for, are bullies. No better than the mean kids on the playground. They must be stopped. As a mother, I’ve had some experience with bullies picking on my son. I found that when they were confronted, they backed down. Calling them out worked, although there was quite a bit of fear on my son’s part, I’m sure. He learned a valuable lesson though: don’t be a victim.

My plea to you is this: Don’t be a victim. Don’t give the bullies power over you. Do what you can to show the world that, even though you have diabetes, it doesn’t have you. Don’t let the naysayers keep you from doing what you need to do to live a healthy life. We may have a hard time busting those myths but that doesn’t mean we have to stop trying. What we can do, and should, is defend ourselves and not hide. No one should have to apologize because they have a serious condition. Everyone deserves kindness and compassion when they are dealing with diabetes of any type. Speak up and speak loudly about what living with type 2 diabetes is really like. Arm yourself with a few myth-busting truths you can pull out and use when someone tries to bully you or any PWDT2. Don’t be ashamed. Don’t let them win. I don’t know about you but I refuse to be a victim.

Putting On My Oxygen Mask – 360

Management & Care, Treatment & Medication

Why is it that as a parent I make sure my kids do things like go to the dentist religiously twice a year, but I don’t always do the best job at taking care of myself? I come up with excuses why I can’t exercise, forget to test my glucose levels, put off going to the dentist… The list goes on and on.

Ok, I’m not quite being the “model diabetic” here, am I? I want to set a good example for my children, but sometimes life gets in the way. It’s sometimes hard for me to take time and money away from the family to do something for myself. At one point my hair was half way down my back because I had a hard time justifying the cost of getting a haircut. Taking care of myself sometimes feels like an easy to ignore “luxury”.

Quite often in our busy lives, we grab a burger on the go instead of taking the time for a healthy meal. We sit at the computer instead of going for a walk. Finding little ways to stay healthy doesn’t have to take a lot of time, money, or effort.

I need to remind myself I’m not being selfish by taking care of me. Remember the talk before take-off on an airplane? Parents, please put on your oxygen mask before putting one on your child. I need to remember that I can’t take care of my family if I don’t take care of myself first.

The Flawed One-Size-Fits-All Approach to Type 2 Diabetes – 404