Friday, November 18, 2016

My Life with Type 2 Diabetes: It’s getting better

I haven’t felt compelled to write much lately. Sometimes I feel as if I’ve said it all, numerous times. Other times I feel as if I don’t have anything of value to say. Sometimes I’m just tired, you know? Another reason that I haven’t written too much lately is that there doesn’t seem to be anything new to add. My life with diabetes isn’t dramatic these days or noteworthy at all. I could tell you about what I ate for lunch or I could talk about how I feel about my latest A1c or fasting blood sugars but… meh. It occurred to me recently that my life with type 2 diabetes is pretty boring lately and then I realized that that in itself is newsworthy! (And two consecutive “thats” in a sentence is weird.)

It’s getting better.

I remember back when I was first diagnosed and how freaked out I was every time my blood sugar was “out of range”. I recall when I realized that potatoes and my blood sugar could no longer be roommates, or even friends and how that reality was devastating to me. I remember all the holidays when all I wanted to do was sit down and eat like everyone else instead of using a smaller plate and only having a bite of the foods I adored. Those things rarely happen these days. How strange is that?

I decided that someone out there might benefit from hearing that eventually it gets better. Eventually you can live your life with finger sticks, medications and carb awareness and not even bat an eye. Do you know that I had a fasting reading of 160 this morning and all I thought was “Huh. Well that’s dumb.” Early in my diagnosis I would have been in tears wondering what I did wrong. I didn’t do anything wrong, my body doesn't always work correctly. That's all. I was just living my life and watching my blood glucose so I could make adjustments and move on.

I’m extremely proud of the lifestyle changes that I’ve made over the 11+ years I’ve been at this circus. It’s been a lot of hard work with a lot of research, experimentation, tears and soul searching. Decisions are constantly made about what is most important to me: mashed potatoes or better health? Lounging in the recliner with a book or going for a walk? Guess what? Sometimes it’s mashed potatoes while reading a book in the recliner, but that’s extremely rare. Most times it’s real food that I know is better for my blood sugar and a walk.

I don’t want to give you the false impression that I’m somehow ok with my diabetes now; that I don’t care that I have a chronic illness (two, maybe three actually). HA! Of course I care! Of course I wish it could be otherwise! I also don’t want you to think that I have it all figured out and that I never stray from the better path. Double HA! If only. I still binge on occasion (just this afternoon, in fact). I still sometimes long for foods I no longer eat. I still feel sorry for myself now and then. But the reality is that my new lifestyle is satisfying. I LIKE going for walks and look forward to getting back to the gym once Ray’s recuperation allows him to go too. I LIKE eating healthier foods. I don’t even care for horribly sweet foods any longer, now that I make my own less-sweet treats.

It’s getting better.

Better doesn’t mean perfect or always right. Better doesn’t mean that my emotions don’t sometimes rear their ugly head and cause me to be depressed. Better means that my diabetes isn’t front and center most of the time. Better means that I’ve figured out the best way for me to eat and exercise and I do those things now, most of the time, without much thought. It’s my new normal. (Let me insert here that I’m rarely normal and if you’ve been reading my blog for a while you’ve probably figured that out for yourself.)

Someday my blood sugars could go south (north?) and my current plan may not work as well. Maybe. If that happens I feel like I’m prepared to deal with it. I feel like I can make adjustments because I already have. I’ve already proven to myself that I can do this.

So can you.

If you’re newly diagnosed, I want this post to be a beacon of hope that you can get here too.

If you’ve been at this awhile and are currently having a difficult time, I want this post to show you that that is normal and you can get through it. (More double that’s!)

Don’t give up. Don’t despair. Life is good, despite diabetes. I’ve said it before, don’t let diabetes rule your life or steer your ship. You are the one who can make a difference. Educate yourself, adjust when necessary and above all, give yourself a break. It gets better.

Tuesday, October 4, 2016

Let’s Talk About Prevention

When I was a little kid, Smokey the Bear would come on TV and say, “Only YOU can prevent forest fires!” I’m here to tell you that that’s some heavy responsibility to put on a 9 year-old. Really? I’m the only one who can prevent a forest fire? Bambi’s well-being is squarely on MY shoulders? Yikes! In reality there are lots of reasons for forest fires other than idiots who don’t pay attention including lightening caused fires. It’s certainly important to pay attention with fire while in the forest (says one who happens to have a national forest in her back yard) but no one has control over lightening. No one can prevent that type of forest fire.

I don’t spend much time on Facebook these days. I lurk and rarely interact. Today my eye was caught by a post from my friend Cherise. In the post she was calling out a reputable organization for posting the idea that type 2 diabetes can be prevented. She called BS (in the nicest of ways. It’s Cherise, after all.). There was a healthy back and forth among some of her FB friends discussing whether or not it is fair to say that type 2 is preventable. There was the discussion of genetics as well as the thought that many people could “prevent” their diagnosis if they would “simply” make some lifestyle changes. There were some “damn straights” and “preach it Brothers” coming from my lips as I read the exchange. It also led me here to write about my thoughts on the subject.

I’m not going to talk about the genetics or science behind this argument that too often pops up on the internet. Although science is very important, I want to talk about the people who are affected by the word “preventable”. People like me. People who have developed type 2 diabetes.

I was privileged to attend the HealtheVoices 2016 Conference this past spring in Chicago. It was a gathering of health advocates/bloggers across all diseases, not just people with diabetes. There was a good showing of folks from the DOC there and it was a rewarding, fun and educational weekend. The conference was kicked off on Friday evening with a banquet and keynote speaker. This gentleman, who collects data about all types of diseases, was going through his presentation, showing us slides of his data, when he said something that caused those of us with knowledge of life with diabetes to gasp. He said that 80+ percent of cases of type 2 diabetes were preventable. Wow. I could barely breathe. Here was someone who ought to know telling 100+ people that I could have prevented my diabetes. We were all shocked. My dear friend Bea said to me, “you have to say something!” Ohhhhh but I don’t wanna. I can’t stand up in front of all these people and confront this man! But I did. With my voice quavering I called him out. I told him that those types of statements do nothing but increase the stigma that those of us with diabetes face every day. Words matter (although I’m not exactly sure what words I used because DANG I was nervous!).

What does it feel like to hear that you have a disease that you could have prevented? It feels pretty crappy, let me tell you. Those of us who advocate for people with diabetes rail against the accusation that people with type 2 did this to themselves; that we somehow deserve what we got. Quit blaming the patient! There are many ways to develop type 2 diabetes that have nothing to do with diet, like gestational diabetes or coming in contact with some type of environmental goop. But the reality is that the majority of cases of type 2 are developed due to lifestyle. Ugh, did I just type that? I did, but let me explain further.

I have said all along that I would have eventually developed type 2 in my elder years, regardless of my lifestyle but my lifestyle probably hastened my development of the disease. That’s not an easy pill to swallow. But hey! I didn’t eat dozens of donuts or vats of chili cheese fries! I ate like everyone else ate. That’s the key: the Standard American Diet SUCKS!

My friend Mike Lawson said it so well in his comment on this FB thread: “and if some all-encompassing study proves that Type 2 is caused entirely by the food we eat, it isn't accurate to say that people that develop type 2 diabetes have done anything except eat the food that we have access to.” Bingo! (I love you Mike!)

THAT is the key! People who develop type 2 diabetes are those who most likely have a genetic predisposition and their lifestyle of too many processed carbs and not enough daily exercise have caused their bodies to cease to be able to process glucose effectively. They aren’t any different than anyone else, they just got the booby prize in the lottery of life.

So back to prevention. Don’t tell the world that type 2 diabetes is preventable unless you’re willing to back that statement with proper education for the masses on how processed food is vile and over consumption of processed carbs is taxing your pancreas and liver and preventing your cells from getting the energy they need. The way the majority of Americans eat is causing over production of insulin which turns to fat which increases insulin resistance which makes it difficult for our bodies to process glucose which causes your pancreas to release more insulin; rinse, repeat. Don’t say it’s preventable unless you’re willing to make whole, real foods readily available to the majority of people in a way that’s affordable. Don’t say it’s preventable unless you teach people how to cook and eat healthy, whole foods. Don’t say it’s preventable unless you go about making exercise easier to achieve in our hectic lives. Don’t say it’s preventable when I know damn well that there was nothing I could have done, knowing what I did at that time. No way could I have fed my family any better on the few dollars I had at my disposal, not to mention that the dreaded food pyramid was telling me to eat 6-12 servings of carbohydrates per day!

Words matter and the people who have developed type 2 diabetes because they have just been living their lives like everyone else deserve better than to be accused of developing a disease that dramatically, painfully affects them for the rest of their lives. Think before you point a finger: can you say that you eat any differently? Are you perfect?

Type 2 diabetes may someday be a disease that can be delayed if the people in our society are given the tools they need to make “better” choices. When our society lifts up real food and shuns fast and convenient crap then maybe fewer people will develop type 2, at least not until they’re old and gray.

When you tell me that my disease was preventable you’re telling me that I failed. You’re telling me that I failed the test when I wasn’t given a chance to study. I failed when fast, convenient tasty foods are priced in a way that makes them an easy choice for people who don’t have much money? When I was just living life like everyone else, I failed. Don’t tell me that I could have prevented it, help me to show my kids and grandkids a better way.


Just like Smokey the Bear, the media is pointing its finger at me and saying that “only YOU can prevent type 2 diabetes!” I call bullshit.

Monday, October 3, 2016

Appearances

*As I began to write this post, I realized that I had never mentioned here that my mother passed away on August 6th. She made it past her 98th birthday and had a good life. This hasn’t been an easy summer but I’m doing ok (and so is Ray).

I had a rather unusual conversation the other day while I was waiting to see my new doctor. The person offered his condolences on the passing of my mother and then went on to comment on how amazing it is that she lived to be 98. Many people have mentioned her age so I wasn’t all that surprised, however, he added that it was especially amazing due to her size. Interesting comment. (My mother was a large woman and had been most of her adult life. She was only 5’4” tall and weighed roughly 220 lbs during the last year of her life.) The conversation continued and I happened to mention that my oldest son is now 40. “Really! And how old was his dad when he died?” 42. “And two of his sisters died young too. One of them drank a lot, didn’t she? Your son should be fine as long as he doesn’t abuse alcohol or drugs.”

O.o

In case you’re wondering, the man is still standing and didn’t require any medical intervention after our conversation ended. I wasn’t offended by anything he said because I’ve known this guy for decades and he’s… different. He meant no offense and none was taken. I’d like to clarify that my dear sister-in-law did enjoy her beer but that is not what killed her. All 3 of those siblings died of massive heart attacks out of the blue at a relatively young age. They had bum tickers, they weren’t overweight and were fairly active people.

It wasn’t until later in the day that I began to think about what was said and what was implied:

My mother lived to a ripe old age, despite the fact that she was overweight, which this person felt was unusual. My first husband and his sisters died at a young age and appeared to be healthy humans so there must have been something they did to hurry their deaths.

Appearances.

Our society spends SO much time worrying/obsessing about what someone looks like and makes assumptions based on those looks as to what that person’s health might be. (Appearances also cause people to make assumptions about someone’s moral fiber and whether or not they are “worthy”, but this is about health and you don’t want to get me started on that other can of worms.) Just because my mother was heavy, this person assumed that it was a miracle that she lived so long. He knew nothing about her health. He assumed, based on her appearance, that she was an unhealthy individual. Mom suffered with bad knees, which was definitely exacerbated by her weight, and couldn’t see due to macular degeneration, but her overall health was fine. Her heart was strong. She survived lung cancer (never smoked) and other various things throughout her life but she was damn healthy! Heck, she still had all her own teeth! My first husband, on the other hand, was a healthy-looking man. He had developed a bit of a gut but he was active and didn’t appear to be ill, and yet he died so young. This just threw my acquaintance. He couldn’t comprehend how this could be! So unless my son abuses drugs or alcohol, he should be fine. What???

I’m so tired of how people are judged because of how they look. Fat-shaming is a perfectly acceptable form of bullying that is getting worse as the people in our society get larger. I have learned that weight loss is not as simple as calories in/calories out. I have learned that exercise can be difficult when you’re dealing with pain. I have learned that dealing with diabetes/elevated blood sugar is different for each individual. I have learned that “doing what I’m supposed to do” isn’t always easy when a low mood hits.

Fact: There are overweight people who run marathons and/or work out regularly.

Fact: There are overweight people who eat very healthy diets and thin people who eat nothing but crap food.

Fact: There are skinny people who are in horrible health.

Fact: Overweight/obese does not equal “unhealthy’ and thin does not equal “healthy”.

I am certainly not suggesting that people not worry about carrying excess weight. I feel that everyone, size aside, should do their best to improve their diet and add regular exercise to their lives. The point of this post is to, hopefully, have people stop and think before they judge. I’m most likely speaking to the choir, since if you’re reading this you are already well aware of how much stigma there is in the world and how important it is for us to take care of ourselves regardless of our size, but I simply had to get this off my chest!

The next time you see someone who is overweight and eating dessert, don’t judge! How is it your business what that person eats? Just maybe they have been rocking a new food plan and are simply having a treat! Maybe it’s their birthday. The point is: don’t judge. You have no idea what their life is like.

If you see someone in the grocery store who has a basketful of processed carbs, don’t judge. Maybe they just need some education about how to improve their diet. It’s not your job to correct them or look down on them.

The next time you see some thin person rocking some yoga pants, don’t assume they are healthy. Don’t fall into the trap of thinking that they are “better” than you just because they look like something the media has made us believe is the ideal.

To all the haters out there: Just. Stop. Who the F*** do you think you are?

Regardless of my size, or my health or the fact that I choose to go without makeup and fancy hair, I walk with my head held high because I know that I’m a good person. I’m someone who is kind. I do what I can to be as healthy as possible. How I look, what I believe or what food plan I choose to follow doesn’t make me any better or worse than the next person.

Don’t judge a person until you’ve walked a mile in their shoes.

Friday, July 15, 2016

Your Illness is Not Your Fault.


Word.

Your illness is not your fault.

Shared Medical Appointments

Doctor appointments are not something that most of us look forward to attending. We’re poked, prodded, weighed and asked lots of questions that we might not feel like answering. The idea of doing any of that in the presence of others doesn’t sound like something I would enjoy, so explain to me why I signed up to participate in a Shared Medical Appointment!

What the heck is a shared medical appointment? Visions of sitting in a room full of people wearing those horrid gowns, swinging their legs over the edge of the table…waiting, pop into my head. (shudder) Rest assured, that’s not what it is. It’s my understanding that the Cleveland Clinic started shared medical appointments as a way to work with larger groups of patients for their follow-up appointments. These patients all have the same condition/disease and could benefit from a group setting. Think support group/education. Here in Podunk, AZ, where we don’t even have a stop light, we have shared medical appointments! Just like in Cleveland but with more pine trees and less traffic!

Back in December, my HCP approached me about participating in their new type 2 diabetes shared medical appointments. It would start out small (6 participants) and would, hopefully, grow. She explained that each patient would have approx. 10 minutes with her to check our labs, weight and meds, etc. and the rest of the time we would be in a support group setting. Since I had tried to run a support group in our town, and failed, I was pretty excited to hear that they were going to do this. The biggest problem I had with my group was getting people to come and speak to us. Here was an opportunity to have professionals come and impart their wisdom upon our heads! I said, sign me up! I attended my third shared appointment this week and I figured it was time to tell you about the experience. It’s been a mixed bag.

The first appointment was just a chance to tell us what to expect and to ask us what we wanted to talk about. We filled out a survey and just generally chatted. We had our time with the doctor and got to know each other. There was horrid coffee available.

Second visit, 3 months later, we had a session with the dietitian. Ugh. Because I follow a lower carb diet, I knew that she would say things I didn’t agree with but she was also kinda pissy. I tried to keep my mouth shut and succeeded, mostly. She was actually spending a lot of time telling us what we can eat at fast food restaurants and which frozen meals are “good”! Thankfully, another participant spoke up and said, “I want to know what I should eat at home!” The doctor asked me what I thought and I shrugged.

This last appointment was conducted by a pharmacist and she went over the A,B,Cs of diabetes: A1c, blood pressure and cholesterol. She’s good and gave us a lot of good information. There were also lots of new people, which was encouraging. I also found out that they now have three groups! I think this is great and a much needed service.

The bad:
  • They push carbohydrates.
  • Not much time with the doctor. (I’m used to using my check-up appointments for everything and now I will have to have another visit to discuss lady stuff, my thyroid and fibro.) It feels rushed. 

The not great: 
  • I see lightbulbs go off over some heads during the conversations (which is good) but there isn’t always time to adequately explain things and they often end up looking confused.
  • While you are having your time with the doctor, the discussion continues in your absence and you might miss stuff.

The good:
  • Some of the people in my town who desperately need to take charge of their diabetes are getting needed education in a group setting.

Although I feel that this is a great service that my clinic is providing, I don’t know that I’ll continue attending. It’s not really something I need any longer. My HCP wanted me to participate because I’m a well-informed PWD and I could “share my wisdom” with the others. But, my “wisdom” often flies in the face of the usual diabetes education and I have no desire to be “that woman” who argues and confuses. Even though I feel that what I’ve learned about diet and my diabetes is valuable information, I can’t exactly stand up and contradict the dietitian. Who are the others going to believe? Answer: not me. I’ve reached a point in my life with diabetes where I have learned what works for me and that just doesn’t jive with the conventional wisdom. It seems that the best place for me to advocate is right here, and not in a support group setting. Unless I could help encourage those others to take charge, check their blood sugar before and after those carby meals and see what it does to their blood sugar. I don’t hear that advice being given. Hmm, maybe I’ll go one more time.


All in all, I think that shared medical appointments are a good thing, something that’s needed. It’s a beginning. Whether or not I continue to attend doesn’t matter, what matters is that it’s happening and it may help some lost souls find their way. I give it a thumbs-up (especially since we don’t have to wear those gowns!)

Thursday, July 7, 2016

Numbers: They Lie

People with diabetes live their lives with numbers; HbA1c, glucose meter readings, weight, lab results, etc. It sucks, to be honest. But I noticed something this morning that made me stop and think, that in a way, those numbers can lie to us.

Have you ever had one of those days when you just felt “thin”? I am far from thin, but sometimes I just feel skinny. I’m not bloated, I have energy, my clothes aren’t tight and I just feel good! One of the worst things I can do on those days is to step on the scale, but I often do. If the number on that scale doesn’t jive with how I’m feeling then I can begin to feel bad. My mind tells me, “Who are you fooling? You’re not thin!” Well, duh, I thought we’d already established the fact that I’m not thin! But that darn number can begin to niggle at my good mood and bring me down.

This morning I feel thin and I didn’t step on the scale! (Yeah me!) I started my coffee and stumbled into my office to check my blood glucose, like I always do. 151 WHA??? I ate reasonably last night, my fasting numbers have been slightly better than my normal lately and now this? My good mood from feeling thin today vanished when I saw that number.

“I guess I’m not doing as well as I thought. Maybe I should step on the scale and see for myself. Maybe I’ll eat ice cream and potato chips today. Why not?”

Those may not be the actual thoughts I had this morning but I’ve definitely had them before. One stupid, unexpected number on my meter or the scale or a lab report can cause me to doubt my ability to deal with this frickin disease.

Lies.

I’ve been reading a bit about depression and anxiety lately and one of the things I’ve seen over and over again from people who live with those conditions is that they lie. Depression lies (not the people who have it). It tells your brain things that just aren’t true and can cause you to sink deeper into depression. I feel as if the numbers we live with as people with diabetes lie to us as well.

These numbers are important and we need to pay attention to them, but we shouldn’t let them control how we feel about our progress. Our numbers are signposts. (Here’s where I shout out to Christel . She used this idea of numbers as signposts at the Las Vegas UnConference this past spring. Brilliant.) What does that mean? It means that the number on your meter is just a sign of how things are going this minute. It’s not a judgement. It’s not any indication that you’ve done something “wrong”. It’s just a number that helps you make decisions about your diabetes care moving forward. The 151 on my meter this morning shouldn’t taunt me and make me feel as if I’ve screwed up. It just tells me to eat low carb today and drink lots of water and go for a walk. That’s all. I still feel “skinny” and I won’t step on that scale!!

Think about this scenario: A newly diagnosed PWD has an HbA1c of 10. Three months later that number has gone down to 8. Wow! That’s wonderful news! However, if someone who knew nothing about that person’s journey saw an 8 they might think that person wasn’t doing very well. That 8 was lying to that outsider but it’s a great signpost for the patient. They’re doing a great job!


They’re just numbers; numbers on a scale or glucose meter, it doesn’t matter. Just. Numbers. Don’t let them lie to you and cause you to feel any differently about how you’re doing. Go ahead; feel skinny!

Sunday, June 19, 2016

Doubt

There are some things that I’m sure of:
  • Snow is cold.
  • Carbs are addictive.
  • My husband’s love.
  • The hospital is not the best place to spend your vacation.

There are some things of which I’m less sure:
  • The price of tea in China.
  • Selecting the best paint color.
  • What my dishes do when I’m not looking.
  • That I know what I’m doing when it comes to healthy dietary choices.

Ray and I had planned a summer vacation that would begin with a weekend camping trip with all my kids and grandsons in Utah, then north to Boise Idaho and east to South Dakota via Billings Montana. Instead we spent time in the hospital so Ray could have open-heart surgery. You know, like you do. In fact, I’m writing this on my tablet in his hospital room. This is day 12 here with a couple more to go if we’re lucky.

He’s doing amazingly well.

Ray was first diagnosed with coronary artery disease in July of 2008. He immediately quit smoking and has, over the ensuing years, added regular exercise, cut WAY back on beer consumption and made dramatic changes to his diet. He basically began doing everything he should to lead a healthy life and keep additional health issues at bay, and yet, here we are. The fact that we were doing everything right and his health still declined to scary-ass levels was shocking and confusing. Maybe all that research we’d done about healthy diets lead us down the wrong path! Maybe we don’t know what we’re doing after all! Did I just cook my husband into the hospital?

The answers: No, we do and hell no.

The body is an amazingly complex thing. There are no cut and dried answers or ways to ensure health. All we can do is our best, and we have been. When confronted with this situation, Ray and I experienced doubt. We wondered if our lower carb, no fear of fat ways had caused him to become sicker. Thankfully there was a doctor who explained it to us. Ray has heart disease and even though he had immediately changed his lifestyle, his disease didn’t just stop progressing. In fact, this great doctor told us that if he hadn’t made those changes he would have most likely become sicker long before this. In other words, his new lifestyle had prolonged a good life. Not only that, but his healthier body will most likely heal more quickly. Those changes were a good thing. Not one person, including the nutritionist, has had to tell us that we need to make changes because we already have! My husband is a rock star.

Dealing with any disease is scary, diabetes included. We are forced to make decisions about how we live, what we eat and the medications we take. Educating yourself on the best course of action for your life with diabetes is imperative. Make a plan and follow it. Don’t let doubt cloud your thoughts. Do what feels right to you and stick with it. If you feel stronger and healthier most of the time then you’re most likely on the right track.

Ray has a long road to recovery ahead of him but we’re hopeful that he will come out the other side able to continue doing the things he loves. There will be other chances for the family to camp together and Mount Rushmore isn’t going anywhere. Our summer “vacation” may not have ended up as we’d planned but we’re making the best of it and looking ahead to more years together. Self-doubt is a liar and I no longer believe it. We will make a few minor tweaks to our diet and forge ahead together. I hope that our story will prompt you to make some needed changes to your life too, whatever they may be.


Oh, and love your people like there’s no tomorrow. You never know.

Wednesday, April 13, 2016

Fighting the Good Fight, even when it’s hard

Yesterday was a bad day. It was the third day in a row that my fibro was causing me to feel horrid but I wanted/needed to go and see my mom, 40 miles away. I decided to suck it up and go, but then something was wrong with the car so I turned around and went home, disappointing my mom. Later, I had one of those moments where I felt I could make a difference in the world of diabetes by responding to comments on Facebook that were untrue and hurtful to people with diabetes, you know: myth busting. It didn’t go well. People are mean and hateful; so quick to poke fun at someone else. Yesterday I felt defeated and wondered why I even try.

There are so many things wrong with our world today, starting with the fact that people find it so easy to spew hate and anger instead of acceptance and kindness. Why is it ok to make jokes about someone’s disease? I recently lost a dear friend to cancer and my nephew is currently going through a bone marrow transplant. Would it be ok for me to make jokes about cancer? Should I sit back and ignore it when someone else makes fun? Hardly. Regardless of what the disease is or how it is contracted, there is no reason to laugh at someone else’s misfortune.

I’ve been told to lighten up. I’ve been accused of not having a sense of humor. I’ve been told that I’m wrong when I say that eating sugar doesn’t cause diabetes of any type. “But eating crap and being fat causes diabetes.” “Diabetes will go away if you’d just eat better.” “It’s ok to say “here comes diabetes” when someone orders a sugary drink. It’s funny!” “People who aren’t willing to take better care of their health deserve what they get.” Over and over I hear these types of remarks. Over and over again I do what I can to right the wrongs and inform the uneducated. Here’s the thing: They don’t care! They don’t want to be educated, they just want to laugh and go about their day.

Why do I do this? Why do I put myself into situations that often cause me grief? My sweet daughter reminded me that I’m not supposed to read the comments. Do not engage. She’s right in that sometimes I need to protect myself and just not go there. But on the other hand, how is this horrible situation ever going to change if no one speaks up? Is it ok to let the bullies win? Is it right that hurtful comments are affecting people and causing them unnecessary pain? I think not. Type 2 diabetes has often been referred to as an epidemic and the medical and scientific communities are clamoring to figure out what to do about it. The more they talk about excess weight and sedentary lifestyles, the more they feed the misinformation and trolls. Yes, a lifestyle of too much of the wrong foods and not enough exercise are risk factors for developing type 2 diabetes. Has anyone every stopped to think that the way people with type 2 diabetes eat isn’t much different than anyone else’s diet? Nope, they assume that we’ve spent our lives eating Twinkies and dozens of donuts… all the time. They just point fingers and laugh.


I know that I’ve covered this very subject many, many times, but yesterday it felt personal. Yesterday I could feel the knife in my back in a way that took my breath away. It’s fucking NOT ok to make jokes about diabetes and even though some days it will be difficult, I will not stop speaking up. I will not cease correcting the uneducated. I will not stop until my last breath because my tribe deserves better. I may not be able to affect much in the way of change but I cannot sit by quietly and let the bullies win. Thanks for “listening” to my rant. I feel better today.

Wednesday, April 6, 2016

The Importance of Education

Early on in my blog I wrote about what it was like to be diagnosed and how I was shoved out the door without any information or offer of education. I still recall all the range of emotions I went through over the years as I tried to figure out how to live with this disease. I was lucky in that I took the time to educate myself, often taking wrong paths but eventually getting back to the basics and shunning the snake oil. I was lucky, but many are not.

There are too many people who have been diagnosed with type 2 diabetes who remain clueless to the seriousness of this disease, either through ignorance or the desire to hide their heads in the sand. Diabetes is scary but it’s even scarier if we ignore it or fail to adequately understand how important it is to do all we can within our power to tame the beast. Besides the millions of people who have type 2, there are many, many millions who are walking around with elevated blood sugars, often called pre-diabetes. They don’t know they have an issue. They haven’t been tested. Some have received the news but are made to feel that it’s “no big deal. Just watch your sugar.” These people go on their merry way thinking they are “ok” because they are going to cut back on their sugar intake. They continue to eat in an unhealthy manner and probably don’t add exercise to their lives. Who wants to if they don’t “have” to?

Education in relation to type 2 diabetes has been my passion, for lack of a better word. It is something which I feel is sorely lacking and desperately needed. I am often frustrated because I’m just one person and I don’t know what it is I can do to stem the tide of misinformation and apathy. It has always felt like the “powers that be” weren’t doing enough to stress the importance of self-care and were too often hammering home the idea that we just need to lose a bit of weight and it will make ALL the difference in the world! Right. As someone who has been attempting to lose weight since my early 20s after my first son was born, I know that “just lose some weight” is never as easy as it sounds. Diabetes and controlling weight are very complex issues and I’m pleased to see more and more studies being done that say just that.

A couple of things have happened recently that have given me renewed hope; hope that people who CAN make a difference are speaking up. Unfortunately, those people happen to be celebrities, but hear me out. Two celebrities have recently spoken up about their lives with type 2 diabetes. Both have had the disease for decades and both are working with pharmaceutical companies to help educate people about living with type 2 diabetes. I’ve never been a fan of celebrity spokesmen. It gets under my skin when people feel that just because someone is “famous” they know more than Joe Shmoe about any subject, be it illness, religion or politics. However, the reality is that people DO listen to celebrities and if their message is clear and helpful then YAY!

“Dr.” Phil McGraw has teamed up with Astra Zeneca to present a plan to help people live well with type 2 diabetes. It’s called the “On it Movement”. I’m not usually a fan of “rules” and this program has “rules”. However, the rules are worthy. The list includes things like educating yourself, making a plan and finding support. I can get behind that. More recently, actor James Earl Jones has teamed up with Janssen in their type 2 campaign called “I can Imagine”.

Let’s be honest: both of these programs are designed to sell you a drug to possibly help you control your diabetes. You may decide that their medication sounds good and you might discuss it with your doctor. I’m not posting about these to encourage you to do that or to even support these medications. I’m not a doctor. There should be ongoing conversation between you and your HCP to determine what medication/lifestyle changes will work best for you and your diabetes. I think it’s important to cut the pharma companies some slack. If they don’t make money, then there won’t be any further innovations in our care. (I’m not going to discuss how often it seems as if they make TOO much money. That’s not my point here.)

Earlier I mentioned that I was more hopeful and here’s why: Lots of people watch the Dr. Phil show and if he’s talking about type 2 diabetes and how difficult it can be to live with it, discussing the emotional/mental side of our battle, then that’s an opportunity to encourage people to step up and do something about their health. James Earl Jones is a beloved actor who just happens to be the voice of Darth Vadar. That dude is serious! We’d better listen! Regardless of how you or I may feel about celebrity spokesmen, these men have a distinct opportunity to make a difference in the lives of millions of people. If their message stays clear and they don’t push the medication too forcefully, people may just learn something. That gives me hope.

One more thing: The Diabetes Prevention Program. A study was done that eventually teamed up with the YMCA that went about teaching people how to make lifestyle changes to keep type 2 diabetes at bay. These people had been identified as having pre-diabetes. The program includes dietary changes and added exercise and it worked.  People were able to have some control over their rising blood sugar levels and stave off full-blown type 2 diabetes. The federal government took notice and now Medicare has said that they will pay for people to participate in the Diabetes Prevention Program. I think that’s pretty huge.

Let me say right here that I do not agree with a lot of the dietary changes that the DPP pushes. There are way too much carbohydrates suggested, IMHO. I have learned, and many people with diabetes would agree, that lowering our carbohydrate level is imperative to attempt to control blood sugar. However, as I’ve said ad-naseum, I’m not a doctor nor a nutritionist nor a CDE. I’m just a patient who has learned what works for me. It’s going to take a long, long time for the “establishment” to get on board with what science has shown to be the best way to eat. In the meantime, think about this: dietary changes aren’t made overnight. People often do better when they ooze into them. Here is a quote from a previous post I did on this very subject:

The reality is that some people who are newly diagnosed have been used to eating upwards of 200 grams of carbohydrates per meal and the idea that they can miraculously reduce that carb intake to 35 grams is ludicrous at best. 

Let’s look at a typical trip to McDonald’s.  Big Mac – 46 gr carbs, large fries – 63 gr of carbs and a large Coke – 86 = 195 grams of carbs.  (information from their website) Wow.  (We aren’t even going to discuss fat and sodium.)  This meal is consumed by an awful lot of people in this country on a regular basis.  Now, compare that to a recommended meal for someone with diabetes.  3 oz. 90%-lean hamburger patty, 1 cup 1% milk – 12.2 gr carbs, 1 whole-wheat roll – 21 gr carbs , 1 cup prepared coleslaw – 15 gr carbs = 48.2 grams of carbs. (approximations by Kate) 195 vs 48.  Enlightening no?  I wouldn’t eat that recommended diabetes meal now.  I’d lose the roll and (add a lot more fat).  But that’s me and I didn’t get here overnight!

The DPP may not be perfect, but it’s a start. I applaud the “powers that be” for trying to get the message out there that poor diet and being sedentary are causing us to become unhealthy. A scenario of fast food and couch surfing can increase your chances of developing type 2 diabetes. They don’t cause it, but they increase your risk. That’s an important message that this program can deliver to millions of older Americans; those people who are at greater risk of developing type 2 due to their age.


Do I wish that people would listen to Joe Shmoe instead of celebrities? Yes. Do I wish that the idea of low(er) carb would find its way into the minds of those who are teaching people with diabetes? Yup. But in the meantime, I have hope that these types of programs will cause the masses to pay better attention and bring the severity of type 2 diabetes to the forefront and, hopefully, remove some of the stigma. Heck, if James Earl Jones and Tom Hanks have type 2 and they’re cool dudes, then maybe people will think twice before condemning the rest of us for just being normal folks who happen to have type 2 diabetes.

Wednesday, March 30, 2016

Sticking Like Glue

An article appeared in my Facebook feed yesterday, several times. The article caused some uproar among the DOC due to the fact that it showed type 2 diabetes patients in a negative light. We don’t like that. My initial reaction was one of disbelief and anger and I commented that I felt a blog post coming on. I was right; here it is. However, as I let myself calm down and think about this situation, my attitude shifted a little bit and I re-read the article with different glasses.

The article (which I won’t link to here because, well just because I don’t want to) was written for healthcare professionals as a guide to help them help their diabetes patients “adhere to treatment protocols”.

The article, upon my second reading, actually contained some good stuff. There were quotes from doctors with good advice to help patients with the difficult task of accepting and learning to live with type 2 diabetes. There were suggestions that showed that these doctors understand how difficult it can be to make the necessary changes we face. They encourage better communication between the doctors and patients; essentially helping people along instead of shoving them out the door to figure it out for themselves. The use of technology was mentioned and even *gasp* the idea of reaching out to other diabetes patients through support groups!

It’s been nearly 11 years since I was diagnosed and these ideas were non-existent when I found myself floating in a sea of WTF as I left that first appointment. I find it encouraging that there may be a swing toward more understanding of the shit-storm that living with diabetes is.

Now let’s talk about what’s horribly wrong with this article.

Failure.

The article lists 5 ways that patients don’t adhere to suggested protocols in their lives with diabetes, despite the fact that these protocols have been proven to show the best results down the road. Each and every one of the 5 areas was addressed as a failure on the part of the patient. The patient fails to make necessary lifestyle changes. The patient fails to adequately monitor their blood glucose. The patient fails to show up for appoints, etc. GAH! Just typing these things has raised my blood pressure yet again and made me feel like reaching through the computer screen and throttling the author of this article. The nerve! The unmitigated gall! The cheek!

Under each of these 5 horrible headings were some really good ideas about how HCPs can assist their patients, but who can get past the freaking headings! When depression, exhaustion or burnout cause me to slip up and eat things that I know aren’t the best choices, I’ve FAILED? Really? When someone can’t afford to buy extra test strips because their insurance only allows them 1 per day, they’ve FAILED to correctly monitor their blood glucose? The lack of adequate patient education on the importance of their medication regimen is a FAILURE on the patient’s part? THIS is what got our collective panties in a twist. Blaming the patient for the myriad ways the system fails us.

Words matter. Regardless of the fact that this article contains some good advice for doctors, it falsely blames the patient. Even an amazing HCP who treats their patients with kindness and compassion is seeing the word failure in conjunction with patients.  If you see a correlation often enough you can begin to buy into it; you can begin to believe that patients are failing without considering that the system might be failing us. It’s bad enough that doctors might look upon us as failures, but it’s even worse when we begin to believe it too; and we do too often.

Living with diabetes is hard; it’s unbefrickenlievably hard. We need to be uplifted and admired for the changes we do make. We need recognition for the mental anguish we experience and help to overcome it. We need better education. We need help, not labels.


People with diabetes work hard, every day, to do the best they can with a sucky disease. As a community we will never “adhere” to protocols 100% of the time but those words like failure will stick, like glue.

Saturday, March 19, 2016

Reconnecting with my tribe

Although it’s been a while since I’ve written in this space, I’ve been here thinking about things to write and diabetes campaigns to promote. I candidly wrote previously about my struggles over the winter and they continued into January and part of February. I’m ok but it’s not been easy to climb out of the funk.

Last weekend I was lucky enough to attend the 2nd annual Diabetes UnConference. Not only did I attend for the second time, but I was honored to be one of the facilitators! It was an amazing experience. Last year I wrote about experiencing the first UnConference and, honestly, I could cut and paste that post here and it would remain just as relevant. If you want to know what the UnConference is like, please go and read that post. Go ahead, seriously.

You may think that having the same experience would make the UnConference a one-shot deal. If you’ve been once, you don’t need to go again sort of thing. Nuh uh. Not even close. You see, what makes the UnConference so special is that it’s people with diabetes coming together to talk about things that affect our lives; things that are meaningful to us. It isn’t “how do I insert this CGM sensor” or “what is the best diet to follow” (although those discussions do happen), it’s discussions about the emotions that we feel when living with diabetes. It’s talking about difficult subjects in a place where you feel safe to do that. It really is a large support group meeting that takes place over 1 ½ days. Powerful stuff.

This year there were familiar faces but the majority of the attendees were new to the event. How cool is that? There was over 2,500 years of diabetes experience in that room. Let that sink in for a minute. Two thousand five hundred years! And yet, we didn’t have all the answers because diabetes changes; diabetes doesn’t play fair. I think one of the things that stands out for me is that, regardless of how many years you’ve been living with diabetes, you still need your peeps. You still need the connection to others who “get it”. You still need someone to understand. The Diabetes UnConference is simply a room full of people who get it and are ready, willing and able to support each other.

So back to me (it is my blog, after all). I was apprehensive about going to the conference this year because I would be facilitating and I was worried that my fibromyalgia would cause me issues. It didn’t, at least not until it was all over. That’s when I hit what I call my “fibro wall” and I spent the last night in my room resembling a rung out dishrag, but a dishrag that felt content and happy. I reconnected with my tribe. I came home filled with renewed determination to start living my life again. What I’m feeling now isn’t just a desire to get back in the saddle with my diabetes but I feel more able to begin living my life now that my responsibilities for my mom’s care have diminished. I want to go camping! I’m looking forward to our “big trip” this summer! Walking. Writing. Hiking. Crafting. LIVING! I may have eventually gotten to this point on my own, but my current feeling of STOKED! comes directly from my experiences at the Diabetes UnConference and all the people who attended alongside me. A weekend spent with my tribe; the people who get what this part of my life is like. It. Was. Amazing.

What happens at the UnConference, stays at the UnConference (and not just because it was Vegas). We pledge to not discuss other people’s stories outside of the event and that allows the attendees to feel safe talking about their fears and issues. If you want to experience this weekend of awesomeness, there is a way. There will be a 2nd UnConference this year in Atlantic City. Check it out here. If you live in the east or are free to travel about, I highly recommend that you register and attend. You won’t regret it (and I’ll be there too!). And, there is always next year! The UnConference will be back in Vegas next spring and I’m sure there will be another one later in the year in the east. So many opportunities are out there for you to experience this phenomenon. Do something good for yourself. You deserve it.