Sunday, November 12, 2017

The Almighty A1c

I’ve been quite whiney lately. I’m sorry. Diabetes hasn’t been playing nicely for a while now and I just can’t seem to get my HCP to pay attention to my concerns because my “A1c is so good”. I saw him again and my A1c actually went back down a bit. WTF? Makes zero sense to me, but oh well. He said “no medication changes, see you in 3 months”. No comment about a 198 fasting or a 171 before dinner. I guess I’m just supposed to shut up, not worry and trust my doctor. Bullshit.

I posted my concerns/questions on Facebook about something the doctor said: “A1c is a better predictor of future complications than individual high numbers.” It made me think that maybe I’m just worrying too much, but some of the answers I received made me feel a lot better about my concerns. High individual numbers should be a concern and someone ought to be helping me figure out how to “fix” this. This gave me the desire to stop feeling sorry for myself and DO SOMETHING! (The old Kate may be back.)

About the only thing the doctor suggested to me was that I see a dietician. Meh. Although I’ve never met with one, I have spent the last 12+ years figuring out what I can and can’t eat. I have been in group meetings with dieticians and the things they suggest are so far from anything I can do (whole grain, cereals with more fiber, sweet potatoes instead of white, brown rice instead of white…) that I was never impressed. I am NOT dissing dieticians, I think they are a valuable resource, I’m just not convinced one could help me. We’re about to find out.

A very nice woman called me to discuss my referral to see her. We talked for a bit (I liked her) and decided to wait a couple of weeks before I see her. The reason? I want to go armed with data (she liked that). I have spent the last 2 weeks documenting everything I eat and when I eat it. I indicated amount of carbs (if it is processed at all) and my pre/post prandial numbers. I have been poking the crap outta my fingers! I haven’t been avoiding foods, I’m just eating like I normally do, occasional binges and too many carbs as well. I am going to call her back tomorrow to set up an appointment. I’m actually excited to meet with her! This exercise has been eye-opening. I’ve learned a lot about myself and how my body is reacting to food (spoiler: not too well). Wish me luck. I’ll keep you posted.

Oh, and I’ll be making an appointment soon with a new doctor, one who was recommended to me by a fellow PWD who just happens to be a nurse. Score!

Friday, October 20, 2017

Jimmy Kimmel Doesn’t Care

It happened again. Big surprise. A comedian tried to be funny and diabetes was the punchline. He doesn’t care that it upsets those of us with diabetes and neither do most of the people on this planet, unless they are touched by diabetes. Of course, our community is up in arms and shouting to the world that sugar doesn’t cause diabetes and it certainly isn’t sweet to live with this disease. I get it. It always pisses me off too but it makes me angrier when some folks in the T1 community throw those of us with T2 under the bus, yet again. You’d think they would be more compassionate. Yeah right. You know what? I’m beginning to think that my ability to be appalled and outraged has been depleted. (I blame this on the political climate.) I find that I don’t care either.

Before you get all “But Kate, we have to fight back!”. Do we? Really? What do we gain from yelling at comedians who don’t give a flying flip? I kinda think we look like a bunch of whiners. I get the need to defend your child who is ill with a horrible disease that they didn’t cause. I get the need to defend yourself when others point fingers at you and blame you for developing a horrible disease that isn’t your fault. I get it. I do. But maybe we are railing against the wrong people. Maybe our methods need fine-tuning. Maybe our energies need to be focused on where they will count.

Who needs to care that sugar doesn’t cause any type of diabetes? People who actually have diabetes or are in danger of developing it. Kids with T1 need to know the facts and be able to arm themselves against the bullshit. They need to know how their insulin works with the foods they eat so they can be healthy. They need to know not to feel guilty or ashamed when the stigma is thrown at them. People with T2 or pre-diabetes need to understand that it isn’t just sugar that gives them blood glucose issues. They need to be taught how to check their blood glucose and make changes to their lifestyle in order to keep things under control. They need education…BIG TIME. (I have a friend with pre-diabetes who had no idea that crackers with sugar free jelly before bed might cause her issues.) They need to realize that diabetes can progress and they have to stay vigilant. They also need to understand that the stigma is bullshit and to stand tall in the face of bullies and well-meaning people.  Who else? Our elected officials. The people who make laws pertaining to healthcare etc. Those people need to know that diabetes isn’t self-inflicted and that we don’t deserve this crap. Heck, even healthcare providers need to understand diabetes better! The rest of the world doesn’t care and I’m not convinced that they need to.

I am not the type to stay silent and I don’t think our community should either. I just think that our message needs a little tweaking. I’ve been trying the more subtle, less angry approach when replying to idiots online who spout nonsense or hurtful things. “You are allowed your opinion but the facts are that diabetes is a very complex disease and the person who develops it is not to blame.” “Too many highly processed carbs can be just as damaging as sugar. Have YOU eaten a lot of pizza in your life?” “I understand that you’re angry on behalf of your T1 child but could you please stop blaming those of us with T2? We don’t deserve that either.” I feel better using this approach and it works in real life too. It seems to take the wind out of sails and doesn’t start an argument that no one is going to win. (Although I’m still apt to vent/spew venom on my own FB or Twitter pages. That is a safe place.)

When we do fund raising we should definitely try to educate the masses in order for them to understand our plight a little better and, hopefully, donate. We shouldn’t stop trying to educate but I think our efforts would be better served if we stopped YELLING AT THE WORLD! Think about this: You’re walking down the street and there is a person collecting donations for diabetes research. They are calm, pleasant and equipped with informational pamphlets. Or. You’re walking down the street and there is a person collecting donations for diabetes research and they are screaming at you that it isn’t our fault and what baby deserves a million needles! Who do you suppose will collect the most donations? Food for thought.

Friday, September 29, 2017

Dear Diabetes: It’s not me, it’s you.

Dear Diabetes,

I felt that it was time you and I had a little talk. You see, I’m a bit weary of you. Why, you ask? Let me count the ways.

 Many, many people feel it’s their right to accuse me of inviting you into my life.  They can do it in a joking manner or are downright rude!

I think about you way too much. You don’t deserve that.

You cause me to feel guilty about things that I shouldn’t feel guilty for; things like eating or reading a book instead of going for a walk.

You make me feel bad.

You cost me a lot of money.

You make me anxious.

You cause me to worry about my future.

I could go on and on but I don’t see the point. I wish this was a Dear John letter; a way to get you out of my life, but alas, I’m stuck with you. I just needed to say to you that I’m going to make every effort to remove some of the control you’ve had over me. You see, I forgot for a while that it’s you, not me. I am not the problem, you are. I wish you’d bugger off but I can deal with you hanging around. It’s not like I have a choice. What I can choose is living my life and using whatever tools are at my disposal to keep you in the background where you belong.

It’s not me, it’s you. You are the problem in this relationship. I am the shining star.


Every Person with Diabetes

Tuesday, August 29, 2017

Reality Check

I remember an instance as a young girl when I stubbornly refused to do what I knew was right because I wanted things to go my way, and I paid the price. My family was going to go to the Orange County Fair and I was SO excited! I grew up at the beach where I rarely wore shoes if I didn’t have to. I insisted that I was going to the fair barefooted, despite the fact that it was all asphalt and HOT! Of course, Mom said no way. I said yes way. The upshot was that Mom told me that if I didn’t put my shoes on, they would go without me…and they did. I missed the fair because I was stubborn and wasn’t willing to change my ways. I feel as if that young girl has returned.

Yesterday was a really tough day. I ate some stuff that I know isn’t good for me because I wanted it, dammit! The result was a whopping 315 on my meter nearly 3 hours after the meal. Wow. I have NEVER seen a number that high on my meter. Never. I was so appalled and shocked and scared. Then and there I decided to call and make that appointment with a specialist 35 miles away; an actual specialist in diabetes. She would be able to help me straighten this mess out! I called and was told that I had to have a referral and that the soonest I could see said doctor was January. Ugh. The remainder of the afternoon was filled with tears, remorse, self-loathing and pity. Pretty ugly. I felt so sorry for myself and railed against this damn disease. After I settled down a bit, I realized that I was going through stages of diabetes acceptance, very similar to stages of grief. Really? I was dealing with acceptance of a disease that I’ve had for 12 years? It was eye-opening.

When it comes to diabetes, I’ve been pretty lucky. I have been able to adjust my lifestyle and meds slowly and keep my numbers mostly in line. I would have periods of feeling deprived but I was proud of the changes I had made and eventually didn’t miss a lot of the foods I used to crave (except potato chips). Things were rocking along pretty ok and I didn’t have to think about my diabetes much. In fact, I wrote that very thing back in November. In that post I also said: “Someday my blood sugars could go south 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.” Reading those words now, only 9 months later, kicked me out of my funk and gave me a little hope.

My doctor wants to “wait and see” and is reluctant to make med changes until things worsen. (ugh). I can’t just go see the specialist like I wanted and fix this issue. That barefoot little girl wants things her way and it ain’t gonna happen right now. It’s time to put my shoes on and get on with it.

I had become too complacent about my diabetes. I let other issues get in front of it and failed to adequately pay attention. Even when things are going well with diabetes, it’s important to watch that you are following your plan. I wasn’t. I slowly fell back in to an eating pattern that made it too easy to eat what I shouldn’t. I was somewhat in denial and thought I was normal. Ha! I’m never gonna be normal and will always, always have to pay attention to what I’m eating. Sad but true.

My body has decided that it’s going to change the game and I need to pay attention. I started yesterday with a slow, short walk on the treadmill to help mitigate that damn high number. I ate reasonably at dinner (my wonderful shrimp stir fry). Today, I’m going to try to get back on track. I will eat lower carb, not highly processed foods. I will get back to regular exercise. I will bake low carb goodies to satisfy me when I need a treat. I will do this, shoes or not, because I’m all growed up now and can make the decisions that are best for me. Decisions that will hopefully allow me to live a longer, healthier life. I’m not going to wait until October for someone else to fix this. I’m going to do whatever I can on my own now and insist on a medication change in October, because quality of life is important. I deserve that. I still hate to wear shoes but I don’t want to miss the fair.

Wednesday, August 2, 2017

Success and “Not Success”

I was going to title this post “Success and Failure” but this isn’t about failing; it’s about lack of success. There’s a big difference.

People with diabetes work hard to “do what’s right” concerning their condition. We may take the required meds, make changes to our diet, add exercise and seek out support. It takes lots of effort and determination!

Sometimes it can be difficult to figure out what the “right thing” is. What food plan works for me, what medications should I take, what should my numbers look like? There are always lots of people who are willing to give you advice. They might be caring friends or fellow PWD, or they could be people trying to sell you something. The best thing to do is experiment yourself and decide what is best for you.

Here’s the thing: we do these things in an effort to improve our health and attempt to keep The Beast under “control” (whatever that is). But what happens when we’re not successful? What happens to us when our best just doesn’t cut it?

The desire to just give up.

It is truly great to read other people’s stories of success; how they made this change or that and had stellar results. I am always SO happy for them! Truly.

“I lost a bunch of weight and my numbers are so improved. I feel great!”

Good for you.

“I started a different food plan, one that shuns junk, and I was able to cut back on my meds!”


“I began exercising and am now running marathons, despite my diabetes!”


These stories are inspiring and help PWD to figure out ways to improve their own situation. The problem is that sometimes PWD do all of the above, or a variation, and they are not successful. That sucks.

I was diagnosed with type 2 diabetes 12 years ago and have always managed to keep my A1c in a good range. Slowly, over many years, I’ve made changes to my food plan, tried to exercise more and increased my metformin when needed so that my numbers would remain as close to “in range” as possible. I rarely saw anything on my meter over 180ish unless I really splurged and expected that result. Things were pretty peachy.

Quite some time ago my fasting numbers began to creep up and hung out in the 130s. I didn’t like that but my doctor said, “Your A1c is so good. Don’t worry about it.” No medication change. No acknowledgement of my concern. I had been attending shared medical appointments (a sort of support group combined with a quick dr. visit.) Last April I told the dr. that, although I thought the program was awesome, it just wasn’t something I needed. She agreed and told me to come back in 6 months “since my A1c was so good”. Then things began to change. My fasting numbers crept up to the 140s, 150s, 160s. I began checking before and after meals (which I hadn’t done in a long time). I was often in the 140s before I even ate. Unheard of for me.

½ taco salad (a definite splurge) 187 4 hours after I had eaten.

Chicken strips (another splurge) 210 3 ½ hours later. No dinner that night.

½ apple w/peanut butter – still at 150 4 hours later…and I was hungry.

35 carbs = 134 up to 216.

½ a BLTA sandwich with a handful of fries for lunch today– still hanging out in the 170s.

I rarely share my numbers but I needed you to see that things are different. Instead of staying within range, I’ve been spiking way up and not coming down. (and to clarify, I don't eat those types of things very often. I eat a low carb, sensible diet.)

So what am I doing differently now? Not a damn thing. In fact, I’m eating a lot less and have been gaining weight.

Cue a doctor appointment.

I’m seeing a new doctor (because the other one semi-retired and is only doing share medical appointments and we already established that I didn’t want to do that anymore). He was surprised to see how high my fasting numbers were. We discussed possible medication changes. We talked about the fact that exercise has been difficult lately due to my fibro, but heck I can do better! “Let’s do an A1c and see where you are. If it has gone up dramatically then we’ll see about adding a new medication. If it only goes up slightly then we’ll just wait and see.”

“But what about these fasting numbers? What about these spikes and sustained higher numbers? What should I do about those?”

“They aren’t that bad. Don’t worry.”

Huh. Ugh. WTF????

I am not sharing this to get sympathy or even advice. I’m sharing this because there are so many PWD out there who are doing everything they can to “do the right thing” and make a difference in their condition and sometimes it just doesn’t work! They read stories about how a certain diet makes a huge difference for others or adding exercise “reversed someone’s diabetes”. And there they sit eating low carb and lifting weights to no avail. How do you suppose that feels? Pretty effing crappy.

This post is for you, fellow I’m-trying-so-hard-and-nothing-is-working peeps. It sucks. It’s hard. It’s simply not fair! But, it’s not your fault. You have not failed, you’ve just had the reverse of success. Not success. All we can do is keep on keepin on. Keep trying different things. Keep hammering on our HCPs to help us. Change freakin doctors if you must, but don’t give up. Don’t give in. Don’t listen to the nay-sayers who tell you that “all you have to do is…” Screw them. They don’t know. They don’t understand. But I do and I think you are fabulous!

Friday, May 12, 2017

Dear Legislator

Recent developments in the healthcare debate in our country have left me feeling powerless. I have tried, for many years, to advocate for people with diabetes and have focused a lot on stigma. Today I heard what a White House official said about people with diabetes. When the stigma is perpetuated by my own government… well it has left me quite deflated. Then I remembered something: I have a voice and it can be heard by my elected officials, but only if I reach out to them. The following is a letter that I will send to my elected officials in Washington, D.C. I urge you to do the same. You can use this link to find the address for your Congressmen/women. Let our voices be heard!

Dear Legislator,

I am writing to express my concerns regarding the healthcare debate ongoing in our country as well to inform you of my wishes as one of your constituents.
Healthcare in the United States is in a shambles and I do not blame that on the Affordable Care Act. Yes, the ACA is imperfect and needs to be fixed, but the thought of the Republican led Congress axing it and replacing it with the travesty you call the American Health Care Act frankly scares me to death. I speak as someone who has a pre-existing condition; two, in fact. I speak as an American who is over 55 but not yet old enough for Medicare. I am among those Americans who will be hardest hit by the provisions in the healthcare act you seek to pass. Not only will older, sicker people be unfairly affected, but millions of people with pre-existing conditions will find it nearly impossible to buy insurance.

The Republican answer to this issue is the use of high-risk pools. Let’s talk about that. According to a study conducted by the Kaiser Family Foundation27% of adults under the age of 65 have pre-existing conditions.  This includes pregnant women! People in this group will find it nearly impossible to purchase health insurance unless they are lucky enough to be covered under a group plan (ie: through their employment). These people would be subjected to higher premiums and lesser coverage than other Americans. These are the people who desperately need health coverage! The Republican plan says that these people would be allowed to participate in high-risk pools to assist them in being able to afford their higher insurance premiums. I’m sorry, but I find it ludicrous to think that the government, state or federal, has enough money to fund insurance assistance for 52 million people. High-risk pools have been tried in the past and have most often failed. Also, the idea that yearly and lifetime spending limits would be reinstated is the same as telling people with major illnesses that the government is ok with them dying if their care becomes too expensive.

Another subject that I feel needs to be addressed is the idea that some health issues are the patient’s fault and those people don’t deserve assistance. The stigma that follows people with chronic illnesses is a very serious problem. According to the director of the White House Office of Management and Budget, people who develop certain diseases don’t deserve the same level of health care as others. He said, That doesn’t mean we should take care of the person who sits at home, eats poorly and gets diabetes. People with type 2 diabetes did not cause their disease nor do they deserve to be looked down upon by condescending asshats anyone. (I’ll probably take that out when I write to my Senators. Well, maybe). Gluttony and sloth do not cause type 2 diabetes. Type 2 diabetes is a very complicated disease but it does have a genetic component and you cannot blame someone for the genes they are born with. Please see this press release by the American Diabetes Association that explains this quite well. Living with a chronic illness is hard enough without having to battle the stigma and when that stigma is perpetuated by our White House it leaves me feeling hopeless.

The bottom line is that too many people in this country will be detrimentally affected should the American Health Care Act, or something similar, move forward. They will suffer if any change to healthcare includes punishment for pre-existing conditions or caps on benefits. We no longer live in a society where the country doctor makes house calls and is willing to take a chicken for payment. Medicine has come a long way and absolutely every American deserves the same level of affordable healthcare despite where they live, their income level or current health. I ask that you take these issues into consideration when voting/debating healthcare in our nation. You are my elected official and I am counting on you to be my voice.

Kate Cornell