We All Hate the Word “Compliance”

Posted by on Dec 28, 2015 in Diabetes & Emotions, General, 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!

 

Read More

The Endo Encounter

Posted by on Jul 21, 2015 in Diabetes & Emotions, General, Management & Care, Treatment & Medication |

(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.

Read More

The Two Faces of Diabetes

Posted by on Jul 4, 2015 in Diabetes & Emotions | 1 comment

Originally posted at Diabetes Ramblings

dramafaces
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?

Read More

Don’t be a victim

Posted by on Jul 3, 2015 in Diabetes & Emotions, General, Management & Care | 5 comments

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.

Read More

30 things about Mike’s Invisible Illnesses

Posted by on Dec 2, 2014 in Diabetes & Emotions, General | 2 comments

A couple of years ago, during Invisible Illness Week, I took part in a writing challenge that asked participants to share  30 things about the invisible illness with which they live.  My original response was posted over on my blog, My Diabetic Heart, and it was recently featured by the good folks over at Diabetes Daily.

Like I said, it’s been a couple of years and there have been some changes in my routine and way of thinking.  So, it’s time for an update.  Here we go!

  1. The illnesses I live with are: Type 2 Diabetes & Congestive Heart Failure
  2. I was diagnosed with them in the year: 2008
  3. But I had symptoms since:   Longer than I really care to admit.  Looking back, I probably had the symptoms of type 2 diabetes for at least a few years before I developed the yeast infection that led me to the doctor.  I’d been experiencing some chest pain, shortness of breath, fatigue, etc… related to the congestive heart failure for a while too.  As with so many people, I didn’t have insurance and couldn’t afford a doctor visit.
  4. The biggest adjustment I’ve had to make is: Has been in my attitude and outlook on life.  And I’m thankful that it has changed for the better.
  5. Most people assume: That because I’m a big guy I must have given myself Type 2 Diabetes and Congestive Heart Failure.  And you know the saying about the word “assume”.
  6. The hardest part about mornings are: Is that my mornings are really afternoons.  I work nights. And working nights with diabetes and congestive heart failure is a challenge.  You might even say it’s not for the faint of heart. Pun intended.
  7. My favorite medical TV show is: I don’t really have one.
  8. A gadget I couldn’t live without is: My meter.  My cell phone is a close second. I use it to keep track of all of my doctor appointments, med refills, etc…
  9. The hardest part about nights are: Well, I work nights as a professional code monkey for a newspaper. So, I’ve got thoughts about diabetes, heart failure, etc… racing around while I’m working through complex algorithms needed to make things work properly and what I end up with is a potential disaster topped off with a migraine headache.   By the way, chronic migraines are another invisible illness I deal with.
  10. Every day I take 10 different oral medications, some multiple times a day, take one injection of Victoza and one injection of Lantus, multiple injections of Humalog, use an asthma inhaler, and a nasal spray. And the cost of all of those medications and related supplies, even with insurance, is astronomical.
  11. Regarding alternative treatments I: If by alternative treatments you mean cinnamon, miracle diets, and snake oils, I’m not a subscriber to the philosophy.
  12. If I had to choose between an invisible illness or visible I would choose: I’m torn on this.  Some days, I’m glad that my conditions are invisible because it’s easy to conceal them on the days when I just don’t feel like talking about it.  On the flip side though, there are many days when I wish people could see the hell that’s going on in my body.   So people could understand that life with type 2 diabetes isn’t easy and that congestive heart failure is scary as hell.
  13. Regarding working and career:  Honestly, I work for the insurance, and for the money to pay the co-pays forced on me by the insurance company.  And I’ve been doing this work thing in the same place for 8 years now. I guess you can call that a career.
  14. People would be surprised to know:  That prior to my diagnoses, I really didn’t care about Twitter. I had no use for it, and thought it was just another trendy thing that would fizzle. And after using Twitter and other social media and being constantly plugged in for nearly 6 years, I found myself feeling tired of it all and decided to take a step back to focus on my needs.
  15. The hardest thing to accept about my new reality has been: The overwhelming financial burden that has come with it.
  16. Something I never thought I could do with my illness that I did was: when I was diagnosed with Congestive Heart Failure, I gave up all hope of ever being able to fly on an airplane.  Everything I read and heard indicated that I shouldn’t it.  I’m so thankful that I’ve had that opportunity, and that all of my flights since were taken to meet with my DOC friends.
  17. The commercials about my illness: Annoy the hell out of me.
  18. Something I really miss doing since I was diagnosed is:  If anything, I miss not constantly thinking about my health.  It gets old.
  19. It was really hard to have to give up:  You know, I don’t believe that I’ve given up much at all.  Well, not unless you count giving up my sanity, and I didn’t have much of that to lose to begin with.
  20. A new hobby I have taken up since my diagnosis is: Traveling to meet strangers I meet on the internet.  And I do so at the drop of a hat.
  21. If I could have one day of feeling normal again I would: Normal scares me.  Besides, I can’t change what’s happened in the past. I can only make the best of the days I have yet to live.
  22. My illness has taught me: That life is precious and short. That it is OK to stop and think about what is best for ME.  I just need to remember that and actually do it.
  23. Want to know a secret? One thing people say that gets under my skin is:  “You don’t look sick.”
  24. But I love it when people: Actually take an interest in how I’m doing, and show that they genuinely care.
  25. My favorite motto, scripture, quote that gets me through tough times is: “A little heart can do big things.”  I’m living proof.
  26. When someone is diagnosed I’d like to tell them: That there is great life after diagnosis.  They are loved.  And they are not alone.
  27. Something that has surprised me about living with an illness is: that so many good things have come to my life because of something bad.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Give me a hug and tell me that she loves me as she has for 12 years.
  29. I’m involved with Diabetes and Heart Disease advocacy because: People need to know what life is like for those of living with type 2 diabetes and congestive heart failure.  People need to be aware of the connections between diabetes and heart disease. And if it’s going to be, then it’s up to me!

I believe that every diagnosis story is important. And sharing those experiences can help others who may find themselves going through the same things. There is comfort in know that you are not alone in your fight. There are others who “get it”.

      30.  The fact that you read this list makes me feel: That you care.  Thank YOU!

Read More

Denial isn’t a river in Egypt

Posted by on Oct 22, 2013 in Diabetes & Emotions, Management & Care | 4 comments

speak-no-evil-hear-no-evil-look-no-evil

“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.

Read More