To Be or Not To Be… Paleobetic

Last weekend, DiabetesMine posted about the Paleo diet and linked back to a post that I had written a few months ago about my experience with Paleo diet and the Whole 30 challenge (30 days of strict Paleo eating). Because of that, a few people left comments asking if I was still doing that, and even though I don’t write for DiabetesMine anymore, I thought I would follow up on that experience in case anyone out there is curious.

Paleo-BannerThe main question is, “Are you still eating Paleo?” to which the answer is, “No, I am not.”

My husband Erik and I lasted probably 3 months on Paleo eating before slowly and surely going back to old ways. But there’s a lot that did stick around! We do cook almost entirely Paleo and/or gluten-free at home. There are only a handful of gluten items that we buy (namely English muffins) because my blood sugars don’t tolerate the gluten-free versions very well. But it’s not like I eat English muffins everyday, so it’s not really a huge part of my diet. Many of our meals that we cook at home are Paleo, because we still use the two Paleo cookbooks that we bought in January quite often. The recipes really are delicious!

Eating out has probably been our biggest backslide. We don’t specifically order with any diet in mind, just whatever we feel like at the time. This has its pros (it’s tasty) and its cons (usually messes up my blood sugars). We also buy a lot of ice cream, because it’s basically our favorite dessert. But we buy Ben and Jerry’s, so at least it’s semi-healthy.

Because of this, my blood sugars and A1C have not really improved. They did improve quite a bit while I was on the Paleo diet, but I also just ate less in general while I was doing the Whole 30 because the protein really did fill me quite well. That and not consuming a lot of carbs meant that my blood sugars had less fluctuations.

However, this is something that I have noticed on similar low-carb and low-calorie “diets” that I have been on in the past. I don’t think this is shocking to anyone, but when you eat less carbohydrates, your blood sugar fluctuates less. There’s nothing really ground-breaking in that statement, but sometimes I think people forget that’s how it works. Yes, you can eat whatever you want, and your blood sugars will eventually do what you want if you take enough insulin, but there is a direct relationship between more carbohydrates and a more difficult to manage diabetes, in my experience.

Now does that mean I eat low-carb? Heavens no. Have you met me? Or seen a picture of me? I clearly love my food, and I find it very difficult to moderate the foods that I love. It’s an ongoing struggle for me. But I also hate deprivation, which is why the Paleo diet didn’t work very well for me either. To be honest, I’m not sure what is going to end up working for me. I know that the Paleo diet seemed too restrictive for my needs. As far as I can tell, I don’t have terrible GI reactions to gluten or dairy. The only reason we eat gluten-free foods is because we do believe that it’s not the best stuff for you, and also because we happen to like eating a lot of gluten-free food (I know, we’re weird).

I don’t find anything inherently wrong with the Paleo diet, nutritionally speaking. Yes, cutting out grains can be challenging, but I don’t believe the body needs them the way you need the essential amino acids that your body doesn’t make at all. There is nothing you need that you can’t get from the Paleo diet in one way, shape or form. Sometimes it takes a bit of creativity to get enough carbohydrates so that you feel good, especially if you’re an athlete, but it’s certainly possible. As with all diets or any kind of restriction on food, it has to be something that you want to do. It has to be something you feel called to do. If you feel forced into it, you’re more likely to rebel against it and it will be unsuccessful. The people who are Paleo and stick with it believe in it, they see the results, and they like it.

For me, I didn’t see it as being a sustainable way of life, but I do appreciate what I learned from my experience on the Whole 30 and the exposure to different types of recipes. Some of my favorite things to eat are entirely Paleo! I’ve learned to appreciate different cuts of meats, the kinds of substitutions you can do with vegetables (try spaghetti squash instead of pasta!) and the magic of spices.

Just like Meatless Monday has made the rounds, I would also advocate eating Paleo a few meals a week to get a stronger variety of fruits and vegetables that you might otherwise not get. Too bad there is no day of the week that begins with P!

And finally, try not to get too hung up on the “history” or “legitimacy” of the “caveman diet.” Almost everyone who actually follows the Paleo diet recognizes that it’s not historically accurate. It’s not meant to duplicate any kind of historical diet that our ancestors ate. What it is trying to do is get us to eat clean, natural and unprocessed healthy foods. There are a variety of reasons why they advocate a no-grain, no-legume, no-dairy diet — all of which you can read about in this book or by searching the Internet — but in the end they just want people to eat foods that are healthy and won’t cause any digestive harm. Not because they want to be a caveman.

 

Running PWD: My First 10K!

I started running almost a year ago and over the weekend I ran my very first 10K. It was very exciting as I had been training for it for the past few months. I have had mixed results over the time with my diabetes and running, some days are good and some days are bad. For the most part, this 10K went well, but it did have some very literal ups and downs.

Even though I was only going six miles, my husband decided to “carboload” with some gluten-free pasta (I’m not gluten-free, but we eat it sometimes), but I also indulged in tortilla chips since I came home from work with a low blood sugar. And we had dessert. I bolused normally, but of course, totally underbolused so “normal” was not really that good.

Around 1 a.m. I woke up and test my blood sugar and was flying at 426 mg/dl. Yikes! I quickly corrected and went back to sleep, hoping I’d be fine in the morning. When 5 a.m. rolled around, I was still up at 284 mg/dl and was not really that happy. I knew so close to the race I did not want to take a ton of insulin, so I corrected with only 50% of what my pump said to take.

I have not had much luck running with IOB, so I wanted to eat as light of a breakfast as I could. I had a lemon Larabar and a glass of water with Nuun, which has lots of electrolytes, but no carbs. Again, I only took half the dose. I also turned down my basal 30%.

When we got to NYC, I tested my car as Erik looked for parking. I was 302 mg/dl. Eeesh. My pump said to take 5 units, but I knew that would be too much. However, I also know that if I’m too high, I won’t perform well and I can even soar higher. So I took 2.5 units. When it came time to head to the start, I tested once more and was 264 mg/dl. Okay. Now I was feeling better.

As soon as the horn blared and we were off, I noticed that my shin started hurting. Not really diabetes related, but it was definitely a pain in the ass. As I hit Mile 3, I took out my Triberry Gu (my favorite) to get some fuel in me. After about .2 miles of walking, I started running again, but after awhile I knew that my blood sugar was going low. Now, when I’m low and exercising, my symptoms become almost non-existent. Yes. Hypoglycemia unawareness while exercising. Perfect timing, no? My only indication that something is wrong is that I suddenly start going very slowly. It basically feels like I’m trying to run through mud.

Another water station was located between Mile 3 and Mile 4, so I go out my second GU (Chocolate Outrage) and had some water with it and decided to walk a bit. I had just ingested 50 grams of carbs, so I knew it was just a matter of time before my blood sugar started to pop back up. It didn’t take much time before I felt ready to run again and ran pretty much the whole way to the finish line, stopping only once to get more water.

My finishing time was 1:24:14, which is nothing too impressive but I’m still happy with it.

photo 1-110K Finisher!

Once I found a place to put my stuff down and stretch, I tested my blood sugar and I rang in at 149 mg/dl. Definitely went low, but recovered nicely. The rest of the day was still a bit bumpy. It took awhile before I actually got any breakfast, so I went low, and then I went low again after lunch. Sigh. I think it had something to do with the fact that I turned my basal rate back to 100% right when I was done with the 10K. I probably should have left it alone. But eventually I came back up and went to bed totally normal.

My main takeaways from this is that I definitely need to take even less insulin if I’m high. Running basically equals insulin on speed, and it just makes things really difficult to manage. What would be ideal is waking up normal and having a GU or some other fuel to just boost my blood sugar without having to take any insulin. I also need to practice morning runs more often. I typically run at night and that’s just a whole different ball game!

And now… on to a half marathon!

DSMA September Carnival: Is There A Doctor In The Internet?

doctor-cartoonThe September DSMA blog carnival picks up from where the DSMA live chat left off at the AADE conference in August: assuming online interactions with HCP becomes a “mainstream” thing, what would you like those conversations to be about? The live chat took place with dozens of bloggers participating in the DSMA Live radio show while simultaneously the DSMA Twitter chat was taking place. Lots of interaction going on! I really enjoyed the experience, and what I said at that event still rings true for me.

Earlier this year, I was at a board meeting with my endocrinologist. Since we were “off the clock” I felt like I had more time to talk to her about things unrelated to me specifically as her patient, so I brought up social media. I asked her if she read or recommended social media blogs or sites to her patients. She knew that I was already involved in that area, and in fact, I’ve interviewed her a couple of times for stories, but I wasn’t sure the extent of what she talked about with other patients.

She told me that as a rule, she doesn’t read the blogs of people with diabetes. To her, that’s a private place where they can talk about their experiences and she doesn’t want them to feel like they might be judged by having a medical professional or their own doctor reading their work. She felt that it was a place for them to communicate specifically with other patients.

As for recommending blogs, she knew that there were a lot of good ones, but she felt that as a doctor, she couldn’t put her “stamp of approval” on anything that she didn’t have editorial control over. She said there were a lot of legal and ethical boundaries that would be crossed if they started specifically recommending a blog to patients that may or may not agree with their medical advice.

I definitely understood why they might not want to outwardly recommend blogs, because it can often be twisted. For instance, often times you’ll see a product mentioned by Dr. Oz and then all of a sudden their are advertisements saying that Dr. Oz endorses the product, which is not the case at all. So I can see why doctors would be less inclined to recommend a website or social network because if someone were to say something that was medically unsound, it could come back to haunt them.

I didn’t like so much her thoughts that doctors have no place reading the blogs of patients. I routinely tell people at conferences that I blog and I even made out business cards for educators and vendors that I met. Heck, I even stood up in front of a large audience of educators during one session and mentioned my blog (as an aside, my actual comment was about diabetes apps…). All I’m saying is that I’m not shy about having medical professionals reading my blog. I want them to see what the real lives of patients are like because I think a lot of doctors forget about the day to day struggles of integrating a very complex and mysterious disease into an already complex life!

I personally would welcome doctors, educators and nurses to comment on my blog if they had something to add or if they had a question for me, or an email if they felt like that would be a better area. However, I also understand wanting to give patients their privacy and space (very nice of them) and I also understand that keeping up with social media is quite time consuming. I think we all agree that our time is spread pretty thin and it’s difficult to keep up with all the blogs we enjoy reading. Just think about trying to do this while also seeing 30 patients every day, plus paper work and phone calls and referrals! I’m exhausted just thinking about it!

I’m not sure we’ve made enough progress where I can comment on what I would want our conversations to be about specifically. But in general I think I want any and all dialogue between patients and their providers to be one of open and honest communication. In whatever form that takes, whether it’s in the office or online, I hope that’s the basis for our exchanges. It’s the healthiest and the most productive, and yet all too often, it just doesn’t happen.

 

Invisible Illness Awareness Week

i_am_what_a_person_with_an_invisible_illness_looks_magnet-p147049417269810181z85qu_400This week is Invisible Illness Awareness Week (of which I have two), and I spotted this survey over on Rose’s blog. I thought I’d fill it out and encourage you to do the same!

1. The illness I live with is: I have type 1 diabetes and depression.
2. I was diagnosed with it in the year: I was diagnosed with type 1 diabetes in 1994 and depression in 2012.
3. But I had symptoms since: My parents say I became symptomatic around the summer before my diagnosis in 1993, but I didn’t really feel the full effects of the impending destruction of my beta cells until after I had the flu in December 1993. I was diagnosed at the end of January. As for depression, I probably have had it awhile so I don’t think I could pinpoint a specific timeframe.
4. The biggest adjustment I’ve had to make is: Despite growing up with diabetes, I feel like I’m constantly learning to integrate it into my life. Diabetes doesn’t make things easy. It’s like living with a loud, obnoxious, bratty 2-year-old all the time.
5. Most people assume: So many things. I think the biggest assumption is that my life is horrible. Lots of pity looks and “Oh I’m so sorry” which is nice, but kind of uncomfortable. There are also a lot of assumptions about what life is like, “Just take shots” or “Can’t have any sugar”
6. The hardest part about mornings are: Remembering to test. I’m so not a morning person so I tend to be a zombie wandering around the apartment, throwing on clothes, making coffee, checking email… and maybe remembering to actually test. I usually do it within the first 20 minutes and definitely before I eat… but since I don’t always eat right away, testing isn’t always forefront of my mind.
7. My favorite medical TV show is: Honestly, the only one I’ve ever watched is House! I’ve never seen an episode of ER and I think only one episode of Grey’s Anatomy.
8. A gadget I couldn’t live without is: Diabetes-wise? My glucose meter is probably the only thing I couldn’t live without. Followed by insulin pump. Followed by CGM.
9. The hardest part about nights are: Waking up with a low blood sugar is just about my least favorite thing. Like ever. In the history of anything.
10. Each day I take __ pills & vitamins. (No comments, please): I take one pill (for depression) and no shots right now, since I’m on an insulin pump.
11. Regarding alternative treatments I: have never tried them, so I can’t comment. I think alternative treatments can be good for certain ailments, but not applicable in all cases, and certainly not if there’s an emergency going on.
12. If I had to choose between an invisible illness or visible I would choose: Definitely invisible. I can’t imagine the pre-judgements and stigma that comes from just leaving your house in a wheelchair or a cane. I’m glad people see me first, not my disease.
13. Regarding working and career: Diabetes has been a huge influence!
14. People would be surprised to know: that my blood sugars are not really exceptionally great. My last one was in the high 7s, but I’ve been in the low 8s for awhile. Sometimes I am embarrassed and ashamed that someone in my position (as a role model, future CDE, advocate) has such “poor” diabetes management.
15. The hardest thing to accept about my new reality has been: I don’t think it’s been too hard to accept my reality, since I’ve been this way forever. But sometimes I do get upset that I didn’t get a chance to experience more things “normal.” I know there is never a good time to get diabetes, and I don’t want to start a debate, but sometimes I get a little jealous of my friends who were diagnosed in their 20s, 30s and 40s. Of course, I also sometimes feel sorry for them, so like I said, you can’t win!
17. The commercials about my illness: I strongly dislike all of them.
18. Something I really miss doing since I was diagnosed is: I don’t really have many memories before having diabetes, so I’m not sure there is anything that I miss. There are just things that I wish I didn’t have to do.
19. It was really hard to have to give up: There are probably a lot of things I should give up, because of how I can see them affecting my blood sugars, but the one thing that I did give up a few years ago and didn’t look back was cereal. We don’t buy it, and I never order it anywhere, so it’s pretty much out of my life.
20. A new hobby I have taken up since my diagnosis is: Blogging! Although it’s hardly new. I’ve been doing it a long time. But my diabetes is what inspired me to start.
21. If I could have one day of feeling normal again I would: I would probably choose that day to run a marathon or something, if I knew in advance when it would be.
22. My illness has taught me: That there are so many beautiful people in the world.
23. Want to know a secret? One thing people say that gets under my skin is: I probably get more upset by how people talk about type 2 diabetes than type 1 diabetes! Pretty much any kind of comment like “Well if they would just take care of themselves, we would have this epidemic.” Excuse me while I outline the genetic, physiological and socioeconomic factors that play into who gets type 2 and who doesn’t.
24. But I love it when people: Asks me a second question after I address their first question (or misstatement). It shows me that they are engaged and curious.
25. My favorite motto, scripture, quote that gets me through tough times is: “When life hands you lemons, make lemonade!”
26. When someone is diagnosed I’d like to tell them: Relax. Take it one day at a time. Do your best. We’re here for you.
27. Something that has surprised me about living with an illness is: How many people know people with diabetes and yet know nothing about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: I’ve lost track of the number of diabetes supplies friends have given me… insulin, test strips, syringes… I’m such a mooch. And wildly unprepared.
29. I’m involved with Invisible Illness Week because: It’s important for people to see how many people are affected.
30. The fact that you read this list makes me feel: loved. :)

Last Semester of Pre-Requisites (And Then…)

onlineedEven though I just celebrated my 28th birthday last month, this past Wednesday I joined the mass of students heading back to school.

This term, I’m taking three classes, but only one of them is actually on a college campus. As I mentioned earlier this summer, I have decided to switch from getting a second bachelors degree in Nursing to getting a Masters degree in Nutrition. It meets more of my long-term goals and my own personal interests. There is absolutely nothing wrong with wanting to become an RN and it’s a perfectly wonderful path for many people, I just decided that it didn’t suit my personality or goals. That being said, thankfully all of my classes that I have thus far taken are still required to become an RD, which means I have not wasted my time in the classroom (whew). But it does mean that I have a few more classes that I otherwise would not need if I had stuck to the RN route.

Over the summer, I “started” an online class in Introductory Biochemistry through UC Berkeley. I use the quotation marks because I honestly didn’t put much effort into the class until the end of August, despite enrolling in mid-July. Summer was just a bit busier than I planned, and my five week intensive re-take of Anatomy & Physiology thoroughly burned me out on school. I needed a vacation. In addition to Biochemistry, I’m taking one online course in Nutrition through my local community college, plus an in-person class on campus in Organic Chemistry. It’s the non-major Organic Chemistry so it’s not as hard as it could be, but it’s not like you can sleepwalk through it either.

My first day on campus was last week and it looks like it will be a pretty good term. I like my professor, although he has a tendency to talk about how much harder regular Organic Chem is (or how easy our class is) and he emphasizes at least twice per class how he is an Inorganic Chemist. Which is really confusing considering we’re in an Organic Chem class, but whatever. He’s nice enough and so far I’ve been doing well with our in-class work on nomenclature (the naming of molecules). In fact, it’s much easier and more straightforward than Inorganic ever was.

Nutrition has barely started, so I don’t have much to say just yet. The syllabus makes it seem pretty easy, but considering it’s an online course, I’m not counting my chickens before they hatch. Biochemistry, for instance, has been pretty difficult for me so far and I think that I do better with an in-class environment. I like the engagement and dialogue with a teacher and I think that teaching yourself a science is one of the most difficult things you can do, because it can be difficult to get a straight answer when you’re relying on Professor Google to clarify the topic. Unfortunately, my school doesn’t offer Biochemistry so taking it remotely through UC Berkeley’s Online Extension program was my only option.

Coming up on my Journey to CDE is taking the GRE. My test is next Monday and I’m procrastinating on studying by writing this blog post. Not that I haven’t been studying. I have taken several practice tests, and have consistently improved every time I’ve taken it. I also have a Kaplan study guide that my friend gave me since she didn’t need it. I have already finished the Verbal section and now I’m doing the practice section of the Math problems. Blech.

My goal is to have my whole application for Columbia University finished at the beginning of November. They have rolling admissions for the Nutrition program, so I don’t have a hard and fast deadline like most places, but I would still like to get it done as soon as possible. It would be really nice to know if I got in before the holidays. Getting into Columbia’s Nutrition program would be the best Christmas present ever!

CWD to PWD: A Parent’s Front-Row View

I’m currently working on my first book, a guidebook of sorts for young adults living with diabetes. One of the topics the book touches on is the relationship dynamic between an PWDs and their parents. I’ve touched on the topic here with interviews with both my parents.

Today, I’m sharing a guest post from John Crowley, the Director of Communities and Content at my former employer, Alliance Health. He offered to write about his perspectives as a parent of Josh, 21, who has recently gone from being a CWD to a PWD. I hope this helps other parents who are dealing with this transition, and of course, us adult PWDs.

We like to say that “kids with diabetes are still kids.” Well, parents of adults with diabetes are still parents.

A Guest Post by John Crowley

photo-169My journey as a diabetes dad began in a pediatrician’s exam room in West Valley, Utah, in August of 2000. My wife and I were sitting there with our eight-year-old son, Josh. It was only in retrospect as we looked at photos from that summer that we realized how emaciated he looked. None of us had really paid attention to the weight loss. But it was the insatiable thirst and the constant peeing that drove my wife to seek some answers.

And there we were, the three of us sitting in an exam room in the silence that followed the doctor’s matter-of-fact, “Josh has type 1 diabetes.”

I remember so distinctly those next three days in the children’s hospital. Josh was exactly what you would expect in an oldest child. He was very bright and pre-programmed to please adults. The nurses and doctors were instantly big fans of Josh. He soaked up instructions and information about this new disease like a sponge. They were so positive, showering him almost constantly with compliments and praise. I will forever be grateful for the way they helped Josh feel equal to the task of managing diabetes.

I won’t lie to you and tell you that we had no rough times in those early years. But for the most part, Josh was a model patient. Within a few weeks, he had insisted in doing all of his own injections. As a third grader, he could calculate his own correction doses and draw up his own syringes. I became more of a diabetes parental adviser. We maintained a pretty good relationship around diabetes. I was allowed to give gentle reminders and advice. But mostly, I let him run the show and I only got involved when he asked for my help or when I saw him making a serious error. I can say that this style of relationship seemed to work really well. For years, Josh maintained spectacular A1c results. I remember distinctly when Josh was about 11 years old, his endo brought a med student in during a clinic visit to prove to the student that young kids actually could achieve great control.

That was then.

As we approach Josh’s 14th diaversary, he is no longer a child. He’s an adult with a life of his own. He’s a college student. He works part time. He goes on dates and hangs out with friends. He’s focused on the things he loves: college football, water skiing, and planning the next time he can be with his friends.

Life is fun and busy. I’m proud of him and grateful for the genuine person he is growing into. However, I have to admit that I miss terribly my important role as diabetes parental adviser. Josh has lived with diabetes long enough that he doesn’t seek out my advice anymore. Ever. And my permission to jump in when I see he is making a serious error? Well that actually ended sometime in high school.

It’s not that he has lost all control of his diabetes. His control has been OK. At least, I think it’s OK. Now that he’s an adult, my only information about how he’s doing comes through him. I don’t get to sit there with him during doctor appointments—like I did for so many years. I don’t get handed the A1c report. I’m not there when the doctor reviews his blood sugar logs (or lack thereof).

On the one hand, I completely understand the feeling of invincibility of being a twenty-something young man. His whole life is in front of him. He’s strong. He’s young. Worries about retinopathy, kidney damage, or heart disease seem way beyond the horizon. In his view, diabetes is a pain in the butt that deserves as little attention as can possibly be given to it.

And that’s precisely why though I completely understand, I also worry about him. I’m his dad. That’s part of my job. And just because he’s taller than me doesn’t mean that I’ve stopped paying attention to his testing habits, food choices, or how much exercise he’s getting. And the truth is, no matter how much attention he was giving to his diabetes, the dad in me would probably always think that a little more attention wouldn’t hurt.

But I know that the trust we developed over the years of his childhood—me trusting him and him trusting me—could be undermined by one unwelcome comment. I cannot be the “diabetes police” no matter how much I may want to. It simply isn’t my place. It isn’t my disease. It isn’t my life. And the truth is even though I’ve had a very intense front-row seat to living with diabetes, I’ve never been on the stage. I am a spectator.

It’s not an easy place to be as a parent. I will probably always long for the days when we counted carbs side-by-side or filled out log sheets together. I will miss the days when I had a little more peace of mind about his health because I felt more involved. But the truth is, I know that’s not the parent Josh needs now. And so we’ll find our way through this new phase of life. And I will hope and pray from my seat in the front row that he continues to do enough to take care of himself.

 

If you would like to guest blog for The Blood Sugar Whisperer, please !