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Diabetes & Emotions, General, Management & Care, Treatment & Medication

The Endo Encounter – 476

(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.

General, Management & Care

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.

General

Surviving the Holidays with the Diabetes Police – 582

It’s beginning to look a lot like… CARBS! Yes, it’s that time of the year for over-indulging. All that delicious food, loaded with butter and sugar. So tasty… so comforting… so… STOP! At least that’s what we’re going to hear the most because we live with diabetes. Oh, yes, the Diabetes Police are out to get us. They “know” sugar is bad for us, and they want to keep us away from it. Don’t even look at that nice tray of cookies.

Annoying, right?

So, if this is that special time of the year to eat, drink and be merry, how are we supposed to enjoy the holidays with someone nagging us about what we should and shouldn’t eat? I’ve been there, with someone giving me the stink eye because I went for the sweets. It’s embarrassing, it’s infuriating—especially when you’re chastised in front of everybody—and I know it takes a lot of self-control sometimes not to snap. After all, we’re already living with a condition that limits some of the choices we make, and having someone reminding us of the fact isn’t much fun.

How do we handle it, then? Here are 5 tips:

  1. Education. I think dealing with the Diabetes Police is an opportunity to educate others about how we deal with diabetes and its many complexities. Tell them about how some of us use insulin to help our bodies process carbs; or explain how even people with diabetes can learn to be smart about food choices and exchanges without having to sacrifice  a good moment at the table. Most people just don’t know better.
  2. Planning ahead. We can be honest and upfront, and ask people not to single us out no matter how good their intentions are. Instead of getting reactive, we can be proactive. For example, is there a way to prepare certain foods you know would be healthier? Don’t be afraid to ask if it’s possible to accommodate it.
  3. Realistic behavior. We know how our bodies work, we know how those 90 grams of carbs will make us feel. So the best way to keep the Diabetes Police at bay is probably stay on track with our own management. We have the knowledge, we have the tools, it is our responsibility to take care of ourselves.
  4. Self-love. The most important thing is to keep in mind that we don’t have to be perfect, and we can’t let other people make us feel bad for not being perfect. Remember Eleanor Roosevelt’s famous quote, “No one can make you feel inferior without your consent.” Accept the challenges, roll with the punches, correct whenever you have to, and move on. But most of all, demand respect from others.
  5. Appreciation. In the end, our family and friends think they’re helping us, supporting us, and doing what’s best for us. Understanding what good support looks like for people with diabetes isn’t easy, so we’ve gotta remember that they’re policing and they’re comments are usually coming from a place of love.

Enjoy the holidays!

Management & Care

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.

Diabetes & Emotions

When to Close the Door – 584

This post was prompted by a conversation I was having with one of my friends from the diabetes community. She’s currently dealing with family members who are not giving her the support she needs, and instead of trying to help they decided to play diabetes police and remind her that she’s going to be another Julia Roberts in Steel Magnolias who will probably never have children and die young. WRONG. That is just WRONG.

At first I was trying to understand where her family is coming from, probably saying things out of concern for her diabetes management, but then I put myself in her shoes and I certainly wouldn’t like my loved ones to remind me of the frailty of my life every chance they get. I’ve had the diabetes police around; the kind of people who instead of trying to help live in oblivion regarding the whole issue, and only pay attention when you put some extra food in your mouth. It is frustrating.

I remember I was still a kid when my mother taught me that I should stay away from anything or anyone that took my inner peace away… even if it was my own family. But how do you make that call? Not all of us have the luxury to tell our family to eff off and leave us alone, especially if we’re young and starting to figure out our life. But does that mean we have to take everything and just deal with it? NO.

I know most people mean well, and I also know some people just don’t know better. As a patient and an advocate I believe it is my duty to educate people so they have an idea of what I have to deal with on a daily basis. The problem is that some people are simply not open to that kind of discussion, and others are just plain stubborn when it comes to learning. So what do I do? In the words of Andrés López, a Colombian comedian, I say “deje así” which is basically just to give it up. But in this case giving up is not a bad thing… I just choose my peace instead of trying to knock my head against a hard wall.

We can educate people and try to make them understand as much as we can, but there comes a point when we have to ignore what they say and let it be. It’s hard, but more often than not, I believe managing a chronic condition requires a big deal of inner strength that can only be gathered if we shut people off when they just don’t get it.

Exercise & Lifestyle

My Struggle with Exercise – 627

One of the first things I learned when I attended diabetes education sessions (many, many years ago) was that exercise was an important part of management and control of blood glucose levels. But in order to make exercise successful, I had to find something I really liked doing; otherwise it would become a tedious task I just wouldn’t stick to. That turned out to be some kind of omen, and I’m trying to break it.

I was always an active child. I was into sports like tennis and volleyball; I also liked swimming, and when I was in college I played some soccer. Once I reached adulthood and my first clinical depression episode happened, I was just too tired all the time. I don’t remember when was the last time I did some kind of sport activity on a regular basis, but I do remember how wonderful I felt and how well my diabetes behaved when I decided to join the gym… and that was a first for me.

I hate gyms; I hate the culture of gyms, probably because I’m misinformed. I don’t want anyone to see my body giggling on that treadmill, and I certainly don’t want to play Barbie. I feel out of place at a gym, which is ironic considering I’m the kind of person who obviously could benefit the most from it. But I long for those days when I got out of work and went for my evening work out, and then I got home feeling great, took a shower, watched re-runs of ER and fell asleep. I don’t remember ever feeling so good about myself. What bigger proof do I need to understand that discipline is the way to achieve things? Why don’t I do it again?

A few years ago, I got a bicycle I had so much fun riding and then life happened. Now the bike is collecting dust and I feel guilty but I don’t do anything about it. However, guilt is not going to take me anywhere and instead of wondering why I don’t stick to an exercise routine, I should just start… that’s always the hardest part. Lack of motivation is what usually gets me… that’s what happens when you deal with chronic depression, but it’s a vicious cycle I’m able to break because I know who I am. I just have to do it.

I know I don’t like to run. But I do love bicycling and swimming. And of course walking. I need to stop making excuses, “It’s too cold,” “It’s too hot,” “It’s too late…” Where does one find that kind of motivation?

Management & Care

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.

General

Diabetes Advocacy Has an Easy Button – 471

(Originally posted at Diabetes Ramblings.)

Do you want to get involved with diabetes advocacy but just don’t have the time?

As a busy mom of five, teacher, and recent masters graduate, I understand this completely!

Please let me introduce you to Diabetes Patient Advocacy Coalition! This is the diabetes advocacy easy button.

As stated on their site, “Join Diabetes Patient Advocacy Coalition to easily help keep policy makers’ attention on people with diabetes. Once you’ve joined, we’ll keep track of issues, opportunities, and how to contact officials. We make it easy to for you to advocate while giving you the opportunity to tell your own story.”

It doesn’t matter what type you are. Type 1? Type 2? LADA? MODY? Diabetes issues affects us all. This site makes finding the issues and who to write to easy. Add a little personalization to the letter and hit send.

As a famous office supply store likes to say, “Well that was easy!”

Une Jeune Fille Stagiaire Avec Des Lunettes Avec Stéthoscope Autour — Photo

Diagnosis Stories

Kate’s Diagnosis Story – 197

I’m afraid that my diagnosis story isn’t very exciting.  It doesn’t contain a list of symptoms that plagued me or a trip to the hospital due to a horribly high glucose reading.  As unexciting as my story may be, I hope it doesn’t keep you from reading this because my diagnosis story is fairly common.  This might be your story too!

Une Jeune Fille Stagiaire Avec Des Lunettes Avec Stéthoscope Autour — PhotoDiabetes joined my life in June of 2005.  Needless to say, it was a huge shock.  My paternal grandmother had diabetes late in life and I have a sister-in-law who was diagnosed with type 1 in junior high school, but I didn’t really know that much about the disease.  Disease.  I have a disease!  It was discovered with a routine blood test by my gynecologist.  She called me on the phone and dropped the bomb, “you should see your regular doctor as soon as possible”.  I didn’t have a regular doctor!  I felt fine!  I made an appointment.

Maybe it’s a mistake. How many out there thought that at first?  Go ahead, raise your hand.  “Surely this can’t be correct.” “Maybe they called the wrong person.”  “Doctors don’t know everything, do they?” Well, it wasn’t a mistake.  I have diabetes.

I didn’t have any of the classic symptoms; at least I didn’t think I did.  My new doctor asked me things like:

Doctor: “Are you thirsty all the time?  Do you drink lots of water?”

Me: “Well, some but it’s dang hot outside!  Doesn’t everyone drink lots of water in the summer?”

Doctor:  “Do you find yourself having to use the bathroom often?”

Me: “Uh, well didn’t we just discuss the fact that I’ve been drinking a lot of water?  Hello! Aren’t you paying attention?”

That first appointment was a dismal failure for several reasons, most of which I lay on the doctor.  She didn’t make it seem as if this was any big deal.  She told me to lose some weight (which immediately made me feel as if this was all my fault).  She told me to change my diet (with no direction; no hint of how I should be eating).  She told me to buy a glucose meter.  She shoved me out the door.  No education.  No referral to anyone for anything.  Kate was flying solo without a clue.

I thank my gynecologist for checking my glucose levels; otherwise I could have gone years without knowing I had an issue.  I’ve read that many, manydoctors aren’t doing that very simple thing to help diagnose people with type 2.  I can thank my own curiosity for finding the education that my doctor didn’t offer me.  I used the internet to find answers to my questions.  I felt horribly alone but I eventually found the DOC (Diabetes Online Community) and that became my support group.  Blogging has become my therapy.

Too many people are unaware of how serious type 2 diabetes can be.  Too many people are treated the way I was when I was first diagnosed; dismissed with little education and no sense of urgency.  It seems strange to say that I was lucky, but I was.  Not because I have diabetes but because I found out fairly early and I, eventually, figured out how to manage the beast.  Although I probably had diabetes for several years prior to my diagnosis, it was found before things got too out of hand.

My diagnosis story may be boring but it’s a common tale.

Médecin et le patient se serrant la main — Photo

Management & Care

New Doctor Blues – 276

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

Médecin et le patient se serrant la main — PhotoMy 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.