Category: Diabetes & Emotions

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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.

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.

Diabetes & Emotions, General, Management & Care

We All Hate the Word “Compliance” – 483

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!

Homme tenant son masques faciaux — Photo

Diabetes & Emotions

Good Grief – 107

Although I am generally pretty bad at maintaining and “positive attitude” on things like living a healthier lifestyle, I also work pretty hard at not allowing myself to feel much in the way of self-pity. I’m beginning to wonder if that’s been a mistake.Homme tenant son masques faciaux — Photo

Of course it’s not healthy to spend much time feeling sorry for oneself. But perhaps in trying not to do that, I’ve failed to allow myself a healthy degree of grieving over my body’s broken metabolism and other issues. Perhaps occasional episodes of sadness or anger about this disease are necessary as part of a healthy attitude.

I’ve only begun playing with this idea. (My business card should read “Overthinking Things Since the 1970s!”) It may well be that I will change my mind on it. But I do believe it’s worth considering.

Faites-le maintenant — Photo

Diabetes & Emotions

Then and Now – 110

This month marks my 8th diaversary.  Wow, 8 years ago I got that fateful phone call from my doctor that dramatically changed my life.  Then: the change felt awful, impossible, unfair and overwhelming.  Now: I feel much better.  Yes, I still feel all of those earlier emotions from time to time, but I don’t spend my days feeling as if I drew the short straw.Faites-le maintenant — Photo

I began my personal blog about my life with diabetes 2 1/2 years ago and, when I read over the early blog posts, I realize how much has changed in my life since the beginning of my journey.  Sometimes I say “What was I thinking?” because the early Kate with diabetes did some silly stuff that I don’t do now (like thinking that sugar free candy was my savior!  Give me a break, I was desperate).  Now I’m able to eat a moderately low carb diet when back then it seemed like I would never be able to adjust my diet successfully.  Now I manage to fit regular exercise into my days (well, ok, most of the time, not always) but back then I groaned and whined and railed against the need to exercise.

If I could give one bit of advice; one bit of wisdom I’ve gained over the years living with diabetes, it would be that you can change.  It may seem impossible now but if you take things one step at a time and focus on the big picture, you will get there.  I don’t claim to have the answers and I certainly have my days when I need someone’s shoulder, but I am content with my life, despite my diabetes.  It’s along for the ride, but it’s not steering the ship.

Cheers!

Carrière dans le travail — Photo

Diabetes & Emotions

Motivation and Effort – 130

Life is full of ideas that most of us just accept without examining them or even being aware of them. Here’s one:Carrière dans le travail — Photo

“You can do anything if you want to badly enough.”

This idea is what leads some doctors to try to instill fear in their patients. The approach would even seem to have some merit, because some people do respond to a disease diagnosis or serious warning by making significant and lasting changes.

Before we look at whether this idea is really true, let’s flip it around:

“If you can’t do something, it’s because you don’t want to badly enough.”

Here is where our idea starts to become dangerous. I’ve spent a lot of time over the years either feeling guilty that I wasn’t sufficiently motivated to lose weight, trying to psychoanalyze myself to figure out why I wasn’t sufficiently motivated, or trying to artificially pump myself up to a higher level of motivation. None of this has helped in the least.

It seems to me to be useful to break our idea into two ideas:

“Greater motivation produces greater effort.”

and

“Greater effort produces better results.”

Both of these statements are suspect, but let’s concentrate on the first one. Does greater motivation lead to greater effort?

There are at least two things that can get in the way of motivation producing effort. The first is when we either do not know what action we could take to move us forward, or we don’t believe that the possible actions we know about would be effective. The other is that though strong desire can spur us to action, it can also paralyze us.

People differ in how they respond to crises. I myself too often responds to a crisis with both mind and body seeming to shut down. Even in a situation that is not a crisis, strong feelings about something that I want to do seem to strangle clear and creative thinking. I have to find a way to view the situation more coolly before I can make progress. This is part of why I think it is dangerous to try to use fear to motivate others.

I once read a friend’s concern for a relative that had been recently diagnosed with type 2 diabetes. This relative was not testing his blood, was not making needed changes in his diet, and was not doing the exercise which would have benefited him. It may indeed have been, as my friend assumed, that the relative did not understand his situation and was therefore unmotivated. But, it may also have been that he did understand his situation but was frightened past the point where he could take effective action.

If there are changes that we want to make in your self-care that we can’t seem to pull off, it may not be that we don’t want to change badly enough but that there are other barriers we need to find our way around.

Roller coaster — Photo

Diabetes & Emotions

Roller Coaster Ride – 157

Roller coaster — Photo

When you go to an amusement park, many people want to ride the roller coaster. The anticipation. The excitement. The fear. It’s thrilling! Most people who ride roller coasters enjoy what observers would call sheer terror, at least from their facial expressions. The unknown at the top of the hill. Not knowing if it is a turn or a drop. The ups and downs of a roller coaster and the speed are what make it exciting.  At the end, many want to take that ride again.

It’s not the same with the diabetes roller coaster. The ups and downs are terrifying, but not in a thrill ride sort of way. The uncertainty of complications. The anticipation of how food and activity works to benefit or harm of glucose levels. This fear is not exciting. The unknown of when the ride will once again be on steady ground. Faces showing terror that doesn’t end with someone begging to take that ride again.

Many times guilt comes along for the ride. If only I hadn’t eaten that. If only I took a walk today. If only I could keep on top of things. Anger joins in. Yelling. Sometimes cursing. Bitterness toward a disease. Sadness also sits in the next car. Tears. Possible depression. Fear tags along. Hoping to keep complication away.

Yes, diabetes is a roller coaster ride. Not only dealing with glucose levels going up and down, but also the mixture of emotions that go along with it. It may not be a fun ride, but it can be a little less scary with the support of family and friends.

Diabetes & Emotions, Management & Care

Denial isn’t a river in Egypt – 310

 

“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.

Diabetes & Emotions, General, Management & Care

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.

Diabetes & Emotions

The Two Faces of Diabetes – 466


My diabetes seems to have two faces, or sides. The side I like to show in public, and the side I like to keep secret.

The public side of my diabetes shows the world that their misconceptions about Type 2 are all wrong. I exercise, I’m a healthy weight, I check my blood sugar on a regular basis, and I watch my carbs. This is the side that I like to present to the world. This is the side that shouts out, “Colas full of sugar didn’t give me diabetes, so there!” The side that says that genetics is to blame more than anything else.

However there is the other side of my diabetes. It’s the side that wants to get comfy in the recliner and eat a whole bag of chips in one sitting. The side that wants to eat chocolate chip cookies with milk until I have a tummy ache. The side that says “Not today!” to exercise. The side that thinks maybe I did something to “earn” the diagnosis of diabetes. The side that shows that I am human. The side that shows that I am not perfect. The side that wants to curl up in a ball and cry.

Honestly this is very close to how I feel as a mom of five kids. The public side is a very organized mom with five amazing kids. The other side is my cluttered house and lucky if I know what day it is sometimes.

Unfortunately our society only sees the side that I want to hide. The media portrays Type 2 diabetics as older, overweight individuals with unhealthy lifestyles. Where are the young, healthy Type 2s with some bum genes? I know we’re out there. I’ve met many through the DOC and other advocacy work. Where are those who develop Type 2 due to other medical conditions such as PCOS? Why doesn’t the media talk about that?

Why doesn’t the media show us the side of diabetes that takes the blame off the patient and admits that sometimes things happen no matter what you do? When are we going to realize that correlation does not equal causation?

When are we going to stop shaming people who live day to day with a life threatening chronic illness?