Friday, February 9, 2018

Insulin: A Love Story

As I said in a previous post, I finally found a health care provider who was willing to prescribe insulin for use in combating my high fasting numbers. I began using Lantus on January 15th. It hasn't even been a month yet but I can tell you that, without any hesitation, I am in love with insulin! What a difference it has made in my life. Wow.

The doctor had me start out slowly at 10 units and then bump it up by 2 units every 2 days until my fasting numbers dropped below 130. I went up and down with dosage for a few days in the second week but I think I have found the correct dosage for me. I have no idea what this dosage is compared to others, and that doesn’t matter, but it feels as if it isn’t very high. I like that because I don’t want to use more insulin than necessary. So what is so miraculous you say? Here are my fasting numbers in the week before beginning Lantus: 160,170,168,170,182,168. Here are my fasting numbers within a weekish of beginning insulin: 110,114,113,130,128,122. It isn’t difficult to see a difference. Love!

The lower fasting numbers combined with the CDE’s Permission to Eat have made a huge difference in my mood, outlook and general happiness on a daily basis. One of the most poignant stories was the first time I went out to eat after beginning Lantus. I opened the menu and thought, “what do I want to eat?” not “what will do the least damage?”. That is a major shift in my thinking around food. Guess what? I chose a salad, not because it was the best choice for my health but because it sounded good and I wanted it. Score!

That brings up another thing I’ve been thinking about regarding insulin use. I touched on this a bit in my last post. Will I suddenly turn into this person who just eats whatever she wants and damn the torpedoes? Big, resounding NOPE! I know better. I have learned over my years living with diabetes that a lot of it is up to me and my choices. I still need to eat a healthy diet. I still need to add exercise to my day. I still need to pay attention. Insulin, and the better fasting numbers, have allowed me to relax and not freak out about food. I am still trying to eat a lowish carb diet but am willing to try adding some healthy carbs back into my life. I’m freer to eat out and actually eat a ½ sandwich or hash brown potatoes. I am not free to eat a whole sandwich with French fries. I still struggle with some foods (potato chips…gah!) but I am not going to eat something that I know isn’t good for me. For instance, we buy frozen popcorn chicken at Sam’s Club that you just have to zap in the microwave for 2 min. I adore it for its simplicity and taste. I mentioned to the CDE that I had such trouble with my bg after eating said chicken. Her response: “Let’s break it down. The only carbs are the bit in the breading. It shouldn’t be a problem.” I had some for dinner tonight. Before eating: 114. Woot! 2 hours later: 204. I’d call that a problem. Should I continue to eat the popcorn chicken just because it “only has a bit of carbs in the breading” or should I be realistic and realize that there are definitely foods I cannot eat, even in moderation? I choose the latter.

I am a much more relaxed person with diabetes these days. This small change has been life-changing. Really! I’m still a little concerned about weight gain, the price isn’t a huge issue at this level of insulin use combined with my insurance, and I’m not intimidated in the least by the ½” needle. No big deal (but DANG, a ½” needle looks ginormous the first time you have to poke it in your belly!) Here’s the biggest plus: I feel like I’m in control again. I know that diabetes will continue to rear it’s butt-ugly head from time to time and I will most likely have to make further adjustments down the road, but I took charge, I stood up for myself and I won. Kate is back!

Monday, January 22, 2018

Permission to Eat: A Visit with a CDE

I can be a curious person. Given a situation, I am most likely to do a bit of research and try to find a solution or explanation. That was me when I was diagnosed with type 2 diabetes over 12 years ago. I was never offered any education or the chance to see a nutritionist/dietician. I was told to buy a meter with the cheapest strips and lose some weight. Terrific. Over the years I’ve observed many people who are dealing with diabetes who just do what the doctor says and never think outside that box. I don’t blame them; that just isn’t who I am. I want to know why. I want to know how. I want to figure out things I can do that might improve my situation.

Through that desire to learn, I found the DOC. I connected with other people who have diabetes. I read blogs and magazines geared toward people like me. I learned what it’s like to live with diabetes. I also learned that there is a lot to living with this disease that the doctors don’t know or understand. I figured out that what I eat has a huge effect on what my meter shows me each day (who would have thought!) I learned and evolved into the patient I am today (and met some awesome people!).

That all sounds pretty cool and maybe a wee bit impressive, but I have discovered that this method of education can cause some problems. You see, as I came to realize that processed carbs were really tough on my blood sugars I began to demonize carbs. As the numbers on my meter began to rise I cut out more foods in order to attempt to control those numbers. I was always praised for my “control” because my A1c was pretty rock steady and was denied access to insulin even though I was unable to eat lots of different foods. My A1c is still pretty rock steady but now I find myself with ridiculous fasting numbers and my doctors wouldn’t listen to my concerns. You see, the thing that the doctors weren’t hearing was that I was struggling with the idea of not being able to eat “normally”. I developed a strange relationship with food.

Let me insert here my views on the low carb way of eating. I think it’s a phenomenal way to control blood glucose! We are told that we need carbs for energy etc., but it has been proven over and over again by people with diabetes that you can, in fact, do just fine without a lot of carbs. I have been eating a lowish carb diet but have not been able to maintain a strict reduction in carbs. (Remember, I have food issues.) I struggle with “denying” myself certain foods and that makes eating a LCHF diet difficult for me. It just isn’t sustainable…for me. It causes me anxiety now and then. Many people thrive on this diet and I am both impressed and jealous. Yay for them! However, I have found that due to a combination of my age, anxiety etc. I need some comfort food from time to time. My problem was that comfort food often wrecked my blood sugar. Enter anxiety and self-blame.

My new physician wanted me to meet with a CDE. Just like with the dietician last fall, I had never met with an educator. We agreed to a one-on-one session to begin. I really liked her. As expected, she also encouraged me to eat more carbs. She wants me to attempt 30 carbs per meal. I am determined to listen to the professionals and am experimenting with adding certain foods. I have already figured out that I can eat certain breads so egg sandwiches have returned to my life on occasion. Score! This morning I tried some oatmeal and will know if that was successful in about an hour. (I’m not holding my breath.) Without mealtime insulin I can’t go hog-wild. Heck, even if I did have mealtime insulin I doubt I would ever get to the point where I would eat whatever I wanted and just cover it with an injection. There was one thing that the CDE said that really hit me: “If you can’t eat a sandwich, then something is wrong and you need more medication.” Wow. Another professional telling me that maybe I don’t need to be so hard on myself. Maybe, just maybe, there is a way to have my sourdough bread and eat it too.

I am trying very hard to stop demonizing food. The visit with the CDE has given me permission to eat again without feeling guilty or stressed or somehow less-than. If my attempt to eat oatmeal this morning gives me higher numbers, then I have a choice: don’t eat that again or let the numbers show that I need additional medication. My friend Laddie and I used to joke that maybe what I needed to do was wreck my blood sugars so the doctors would consider insulin. Here I am sorta doing that only in a controlled way with the blessings of people who are supposed to know. I am not trying to prove that carbs ruin everything, but instead I’m trying to find whole food carbs that I can eat without issues. I intend to continue to eat the low carb foods that I’ve added to my arsenal like my low carb pizza crust made with eggs and cheese which is awesome! I’m hoping to add other “regular” foods like some bread now and then and maybe a wee bit of potato. Kate just wants to feel more normal and stop feeling bad when she eats certain foods.

Food isn’t the problem, diabetes is. Doing everything one can to live with a chronic illness is commendable. I can’t beat myself up because my way of dealing with diabetes led my doctors to think that everything was alright when it very much wasn’t. Something needs to change in the way people with diabetes are treated. Physicians need to do a better job of listening to their patients. They don’t just need to listen, they need to hear them. Mental health in regards to a life with diabetes is just as important as the damn numbers we are forced to pay attention to.

I am evolving, yet again, as a person with diabetes. My recent revelations regarding me and food has been very uncomfortable. I am even feeling some guilt for past blog posts because I feel as if I was being too narrow-minded. I’ll work on that guilt because this blog is about my journey with diabetes; what I’ve learned and how I live with it. I can’t beat myself up for how I was then any more than I can change who I was as a teenager. I can learn and move forward and maybe my words here will ring true for someone else. The Kate who shunned processed carbs was not on the wrong track. On the contrary, she was spot on! It’s the fault of the “system”, not the patient. Here’s to my continued journey!

PS: I’m up to 14 units of Lantus. The results leave me hopeful but I have a way to go yet. More on that in another post.

Saturday, January 13, 2018

Health Insurance: A Rant

Ray and I ended last year with the jolly news that our insurance premium was going up by $200 per month. Yippee!! You need to know that this has nothing to do with politics or what our Federal Government is doing or not doing in regards to healthcare. We are in the most expensive group possible when it comes to healthcare costs. We are not yet old enough for Medicare and we are in a group through the Arizona State Retirement System. Catch that? Retirement. There are no young, healthy people in our group that would offset the high cost of keeping us alive and as healthy as possible. (I don’t want to get political in this post but this should be a wake-up call to show what will happen when people can choose to not be insured, and they will. Costs are going to go through the roof!)

We’ve been dealing with rising costs for a few years now but it has now reached the point where I’m contemplating taking my Social Security early just to survive. It sucks. It pisses me off. And yet, I am so thankful to have said insurance, whatever the cost. We could be bankrupt by now if it wasn’t for insurance. Sigh.

Now let me rant. Our insurance company has added a new twist to our coverage; one that our group admins didn’t do a very good job of explaining. We have a passive enrollment, meaning that if we are “happy” with our coverage then we don’t need to do anything. It wasn’t until we received our new cards that I saw the change. The company has now begun to “rate” doctors and has put them into “tiers”. IF we see a doctor that is in the tier 1 group, then we pay a $30 copay or $60 for a specialist. That’s how it was last year. However, if the doctor you want to see isn’t a “tier 1 doctor” we pay double. Yup, $60 to see a primary care physician and $120 to see a specialist. Someone like say, Ray’s cardiologist or his primary care doc. Excuse my language, but FUCK THAT SHIT!

I get it. I understand that the insurance company is trying to cut costs where they can, however, they are forcing us to go to certain doctors. They are MAKING OUR HEALTHCARE DECISIONS FOR US! I know that there are perfectly good doctors out there that, for whatever reason the effing insurance company has decided, don’t make the cut. Maybe they're fairly new, maybe they ask for more tests than the almighty insurance company likes. Maybe they didn’t fill out some freakin form! Whatever the reason, I hate it. It makes my blood boil. (Too bad that boiling blood doesn’t reduce blood glucose levels.)

As many people have experienced, ad nauseum, I have bumped up against “preferred prescriptions”. When I went to fill my RX for Lantus I was told that my insurance company prefers that I use Levimir. Of course they do. As it so happened, Sanofi (makers of Lantus) have a savings plan that allowed me to get my first prescription free, instead of over $500. (Isn’t that how drug dealers work? Give you the first bit free so you’ll come back?) That was nice but, why can’t they just make the stuff more affordable to begin with? Anyway, I filled it (Hello, free!) and will talk with my new doctor on Monday to see about Levimir or possibly Basaglar which is remarkably cheaper and has been mentioned by a couple of my friends. I know that I shouldn’t complain. I am remarkably lucky to have insurance (even though it’s costing us upwards of $18,000 per year to have it, BEFORE copays etc!)

I hate health insurance, and I have felt this way for a very long time. I feel that these companies are a huge part of why our healthcare system SUCKS. I hate that they are telling physicians how to care for their patients. I hate that they are making us choose from an even narrower list of providers, which is extra difficult when you live in rural America. I know that no one who can do anything about this is listening but I just had to get this off my chest. I had to rant. Thank you for allowing me to do that.

Tuesday, January 9, 2018

We Have Lift-Off!

Have you ever cried at the doctor’s office, in front of a new doctor who doesn’t know you from Alice? I have. Yesterday. I didn’t ugly cry or sob, just tears. I apologized to him and explained that “no one has ever listened to me before.” Guess what he said! “I’m sorry that happened to you but we’re going to get this worked out.”

Yup, tears.

Let me back up a bit. Yesterday I had my first appointment with my new HCP, who happens to be 35 miles away. As I’ve said in previous posts, I’m tired of my concerns being ignored so I’ve changed doctors. I had planned to see a doctor who was suggested to me by someone in the DOC. I called last week and was so disappointed to find out that he is no longer taking new patients. Damn my luck! However, there is a nurse practitioner in his office who could see me. Yes, he could help me with my diabetes. I figured, what the heck, let’s give this a shot. I went armed with data and determination. I explained that I’ve been living with diabetes for over 12 years. I acknowledged that my A1c is still very stable but I had provided him with numbers, both fasting and pre/post prandial that I had gathered when preparing to see the dietician in November, that I hoped would explain my concerns. I said, “I know my A1c is good but I don’t think that fasting numbers in the 160s or post prandial numbers above 200 are a good thing.” You will never in a million years guess what he said to me. “You are absolutely right.” What? Really? (This is where I teared-up).

He told me that I had options, including more oral meds and Lantus. HE OFFERED ME INSULIN!!!!!!!!! Deep breath. I indicated that I didn’t want to take more oral stuff, but wanted something faster and more predictable. This is where he told me that he wasn’t used to seeing patients who actually asked for insulin. He said he has patients with A1cs of 10 and 11 who refuse insulin. That made me sad. He applauded me for realizing that things were progressing and wanting to jump on it before things got worse.

I cannot adequately explain to you how all this felt. My concerns were validated, a HCP listened and we came up with a plan together. I had fasting labs done this morning and I will return next Monday for a more thorough looking-over as well as instructions on how to poke myself with Lantus. Oh, and he has referred me to a CDE which is another thing I’ve never had…in 12+ years.

I feel more hopeful. I’m a bit worried about weight gain but the doctor said we’d keep an eye on that and adjust as needed. I’m concerned about the cost of the Lantus. (More on this and an insurance rant on the next post.) No matter the cost, it’s ok because I GET TO USE SOME INSULIN!!!!! I be happy, can you tell?

Oh, and please learn from my experience. Don’t EVER let a doctor tell you that your concerns aren’t valid. Don’t continue to see a doctor who won’t listen to you. Stand up. Speak up. Do whatever you need to do to get the healthcare you deserve. Please.

Friday, January 5, 2018

The Dietician

This is a story about an old dog and a stubborn mule. No, I’m not saying that the dietician is either of those animals. I am both.

I made an appointment with the dietician and met with her in late November. My initial opinion of her from our phone call held. I like her. I went armed with 3 weeks of food journals along with all the blood glucose checks surrounding those meals. It was a lot of work but worth it since I could show her what I’m doing and not just try to explain. She was glancing over my numbers and said something totally shocking! You might want to sit down for this: “I don’t see any fasting numbers below 130. You might need some long-acting insulin.”

YES!!!!! Someone paid attention!!!!! I was so excited to hear that. Now, she isn’t a doctor but, dang, she outta know!

WOOT! Happy Dance!!! My concerns felt so validated. Phew!

Now to discuss the rest of the appointment. We talked about carbs and fiber and she feels that I need more of both in my diet, as well as maybe more fat. This was completely expected on my part but I had decided to go into this appointment with an open mind. Many of her suggestions were ones that I had shunned over the years after copious testing on my part. Oatmeal, whole-grain bread, potatoes etc. She would like me to shoot for 30-45 grams of carbs per meal. I didn’t believe that I could eat that many carbs without ridiculous numbers on my meter but I was determined to follow directions and see what happened.

We also discussed fiber. I have long known that the Standard American Diet is woefully lacking in fiber and that is most likely causing lots of health issues for all of us. I have never gone about seeking more fiber, I just assumed that if I ate more real food and less processed that I’d be getting enough fiber. Well… She wants me to slowly work up to adding 25-30 grams of fiber per day. (Slowly so as not to cause my guts to rebel.) That didn’t seem like such a daunting task until I started actually looking at how much fiber is in food. For instance, one would assume that broccoli contains a boat-load of fiber. 1 cup of chopped broccoli has 2.4 grams of fiber. You do the math: I’d have to eat SO MUCH BROCCOLI to reach my daily goal! Granted, the carb to fiber ratio is good, it’s just that a lot would have to be consumed. Beans seem to be a good choice for added fiber and I have also been drinking a fiber supplement every morning for a few years. Needless to say, reaching my fiber goal will not be easy simply because I don’t eat that much food.

She encouraged me to continue “experimenting” and paying attention to how my blood glucose responds to the “new” foods. I discovered some amazing things! I was able to eat a seedy, whole grain piece of toast and my bg didn’t freak out! Unheard of. I had about ¼ cup of baked potato and the roof didn’t fall in. I was also reminded that not all bread is created equally when I ate a white dinner roll and the outcome was horrendous.

Other things to work on: eating something within 2 hours of rising. That one is so hard! I’m just not hungry in the morning. Do some yoga-type stretches (or other exercise) within 10 minutes of eating a larger meal and/or 4-5 hours before bedtime.

All in all it was a good appointment. I have fallen off the experimenting wagon since I got the flu in early December and then the holidays happened. I’m hoping to get back on the program now.

I was and old dog who thought I couldn’t learn something new. I was a stubborn mule when I allowed myself to think I could no longer eat carbs. This doesn’t give me carte blanche to eat whatever I want, far from it. I have continued to see some awful numbers on my meter and have been reminded why I stopped eating certain foods. However, I have already learned that I need to be more open-minded when it comes to food. It is not the enemy.

Oh, and I have an appointment with a new doctor on Monday. Wish me luck.

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.