d-eyeballs

May 25, 2011

There’s really nothing like the fear leading up to an impending opthamologist appointment. About a week before the date, I start having random moments of freakishness where I may start thinking that my eyeballs have stopped working. I wig out when my BG hits anything more than 140, and I convince myself that some Really. Bad. News. is inevitable. I try to remember to breathe, not always successfully.

So last week when I went to my first appointment with new Dr. D-Eyeballs, I was a bit of a mess. Perfectly normal. I asked for a referral from my relatively new Dr. WonderfulEndo, whom I love, so I had hope that Dr. D-Eyeballs would also be wonderful. I was also prepared for massive disappointment and eyeball crisis. It’s just easier to be ready.

In the last 31 years I’ve had opthamologist Dr. Crappy-s who have asked me if I’ve “been good” to my eyes. Ones that berated me for whatever my last HbA1c was. Ones who tried to scare me with horror stories of retinopathy, glaucoma, macular degeneration, and other complications in people with type 1 diabetes. And then there were the ones who didn’t even ask about my type 1. Admittedly, I have a narrow range of acceptable and appropriate statements that opthamologists could say to me without sending me over the edge. But I’ve heard the entire gamut of possibilities, most of them terrible.

Not my new Dr. D-Eyeballs! She’s totally ah-may-zing. She’s the clinical research director for the practice, brilliant, and informed/respectful/totally competent re: type 1 eyes. I’m so thankful when I get the opportunity to see a good medical provider, and she is one.

Cut to the great news from last week’s appointment: No retinopathy, no other d-eye problems. After more than 3 decades with D.

It’s hard for me to believe. I wanted to ask the doctor if she was absolutely sure. Really? Not one little blip? Even under the extra magnification? Are you SURE?! I kept waiting for the “BUT…”

Not this time.


belated saturday snapshots for Dblogweek

May 17, 2011

This weekend, we took a visiting college friend who had never been to San Francisco into the city to do all kinds of touristy things that are fun for locals too (even if they won’t admit it). Even though it’s been a few years since we lived south of the Golden Gate Bridge, the crazy urban details that mess with t1d management come back immediately.

It’s damn near impossible to know how much, how sporadic, or exactly how intense the city traversing is going to be, but it’s always there: The long slow incline up certain hills in Chinatown; insane inclines like Lombard and the south end of Masonic; the quick sprint needed to grab the 8x Stockton bus; and the power walk around Stow Lake in Golden Gate Park.

I’d never “done” the city with a continuous glucose monitor before. It certainly helped, but I still had to guess how much to decrease the temp basal rate and for how long. I also had to SWAG a lot of the awesome food we had, from the yummy chicken veggie skewers in the Haight to the fresh sample at the fortune cookie factory, from the delish Ghirardelli chocolate at G. Square to the comfy clam chowder in a Boudin sourdough bread bowl. Despite my best efforts, I still had to chug the juicy juice–while riding the cable car and hiking to the awesome parking space we found on Lombard, among other places.

Anyway, we had a touristy kind of ball and so did our friend. Of course I took a ton of photos, a couple of them with the D all front and center. First time I’ve ever done that, and it was kind of cool.


a focus on good D things

May 12, 2011

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Believe it or don’t, but just  like Karen’s blog header says, life with diabetes isn’t all bad. Seriously. The D-Blog Week topic for the day involves focusing on good things diabetes has brought us. I don’t like to give D a whole ton of credit, but I do like to look at the brighter side. So let’s get into it, shall we?

Because of type 1 diabetes, I have:

– Met SO MANY truly amazing people, including: The girls from my Cottontail Cabin at Camp Diamont, Montana’s summer camp for kids with diabetes that I attended from 8 to 14 years old! My several friends from Camp Diamont who came back as junior and senior counselors with me: Y’all are such superstars and I’m glad to still know you and have you in my life (thank you Facebook and LinkedIn!). My dear friend E, my first friend with type 2 diabetes who was a real love and whom I miss so much.

– Joined my life with a partner who loves me for who I am–D included. She knows all that my life is, and accepts me with it. There’s no hiding it, even though I didn’t take very good care of myself the first 15 years we were together.

– Become an assertive advocate for myself, family members, friends, random strangers with regard to medical care providers. (Insurance companies are another matter–getting something in the mail from insurance gives me a panic attack before I even open it.) BUT with medical care, I’m your go-to person. I can stay calm, ask questions based on research, say things like “What does the most current literature say about that?” “What kind of results can be expected?” and “How can I make _____work in my life?” And if I’m not satisfied with the answers I hear, I feel empowered to break up with the Dr. Crappys and find another provider. It might not be easy, but I’ll find one who will treat me with current, peer-reviewed knowledge and expertise and respect about successfully managing type 1 diabetes.

– Learned how to take care of myself, and to problem-solve for whatever crisis comes my way. Being prepared is one thing, and dealing with whatever comes along is another. Cooked your one bottle of insulin in a car in 90 degree heat? Been there. Lost insurance coverage? Yep, done that too. Left the house without insulin pump, whether for hours or days? Word. BGs go high immediately after exercise at certain times of day, but go way low during exercise at other times? Still figuring that out, but I *will* prevail (if you’ve dealt with this issue too, please comment or email!) D has made me self-reliant, confident, knowledgeable, and creative.

– Found that I have a passion and talent for promoting public health in ways that don’t demand a lot from individuals: Policies and systems that help make healthy behaviors easy for communities and populations to choose. Because the environment and culture influences so many of my decisions regarding diabetes management, from food and exercise to medical and life insurance coverage and beyond, I understand. It would be a lot easier if our environments supported us in managing our diabetes, rather than demanding we be strong and independent and go against the grain to make the best choices for our health. It just shouldn’t be this hard, and I like to work to change that.

– Found the DOC (Diabetes Online Community), hundreds of folks with D, parents of children with D, and loved ones of kids and adults with D. Can I just say that finding the DOC was truly a lifesaver for me? That’s the truth. I don’t think I would ever have been able to start to change so many of my own behaviors without having the security blanket and the supportive push into the positive pool of the DOC. Everyone who blogs, or tweets, or is on Facebook, with D, is sharing their piece of the entire global d-mosaic with us, and making all of our lives better. Together. Some days I wish I could just read blogs and tweet all the time…but honestly, I’d rather meet everyone at, say, a d-prom IRL.

-Knowledge that I can do this, it is possible and I won’t be struck out of the game. Thirty years in, I’m still here. That’s a good thing.


10 things I hate about you, Diabetes

May 12, 2011

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10. It’s so damn expensive to manage type 1 diabetes. Between co-pays for  treatments/tests/prescriptions/supplies that is actually covered by insurance, and paying 100% for all of those things that are not covered by my insurance, not to mention anything non-medical that wouldn’t be covered by insurance (like exercise classes, exercise equipment, continuing care education, stress relieving activities, etc…) I’d probably have an extra $10,000/year if you (D) weren’t around. Bleh.

9. You demand too much attention. To “manage” you well, D, I have to think about you all. the. time. I spent a lot of years not thinking about you very much, with BGs and HbA1C levels that showed it. Now I want to manage you well–take good care of myself–and that takes constant attention to you. You’re spoiled and whiny.

8. You’re too much all about “no.” It’s not in my nature to think “No, I can’t have that. No, I can’t do that. No, I can’t eat that.” But that’s what you’re constantly yammering in my ear. And it took far too many years for me to figure out how to work around that, to empower myself to find solutions, ways that I can have things and do things and eat the things I would like to. But the fact remains, a lot of the time, I can’t do what I’d like to do: travel with just a wallet, keys and clothes; go outside and walk/run/hike without an arsenal of d-supplies; eat only when I’m hungry and exactly how much I feel like eating; tear off my clothes and have sex without thinking about the pieces of equipment hanging on my body; and on and on…

7. You hurt us, physically, emotionally, and spiritually. All the time.

6. You never take a break. Supposedly there was a “honeymoon,” although I never experienced it. After almost 31 years, I would think you’d need a vacation. I sure as hell do.

5. You get in the way. I’m always dropping something you require: meter, pump, CGM, various d-garbage, poker, test strips, juice boxes, flash drive w/ my logs on them, carb counting book…good grief. You’re everywhere, all the time.

4. You’ve given me rotten body image, messed with my head not only about the way I look but about ways I can improve how I look without hurting myself. I could have been a woman who automatically thinks good things about her body and the way it looks. In addition to the harmful messages all girls and women get about our bodies, you added on yet another complex level of hatred and harm. Awesome.

3. You completely fucked up my relationship with food for 30 years. I’ve barely started recovering from that, and am finally able to think of food as just what it is–fuel with specific numbers attached to it (carbs/fat/calories), which will influence other numbers in my body (BG, CGM, bolus rates, basal rates, time spent exercising, pounds of weight). Even though I asked for them for many years, none of my endos or primary care docs could refer me to a shrink or counselor who specialized in food and body image issues for girls/women with type 1 diabetes. They didn’t know of any. I finally feel like I’m doing much better, but seriously, no thanks to you.

2. You cause my partner, my 5 y.o. daughter, my parents, my brother, and my good friends a lot of concern, all the time. It’s exhausting for them too. Bad enough you’re always on my case, but why can’t you stop getting in my loved ones faces? You being around reminds me that I’m not like them, that there’s something wrong with my body, that there’s a part of me that will always need help.

1. I can’t control you, no matter how hard I try. Even with much “better” numbers like BG, HbA1c, and weight, you come right out with a whack to my head at any random time. There’s the 32 mg/dl that I don’t even notice that without CGM could do really bad; the 65 mg/dl that feels like I’m spinning right round and can’t realize that the juice in my hand needs to get into my mouth; and the 160 mg/dl that given my new, tighter management, feels like my blood is concrete and I’ve been run over by a truck. Never mind the random 257 mg/dl for no. good. reason. Like, I didn’t eat anything and my pump site is fine and all batteries are working and I’m not that stressed (or wasn’t, before the 257 came along). I do my best every day, and you will not be controlled or submit to me, as you very well should if you had any decent manners at all. Might as well call you Voldemort.

In the immortal and so satisfying words of Kathy Griffin: Suck it, Diabetes.


d-blooper in the sky

May 11, 2011

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6am flights suck, diabetes or no. They suck for a variety of reasons including:

1. In order to get out the door, take a shuttle to the airport, get through security (including any TSA d-hassles), and the rest of the non-d-stress that comes with traveling on an airplane, I have to get up at about 4am.

2. My brain (and body) don’t want me up at 4am. They don’t cooperate. They don’t do normal things that they can do at, say, 7 or 8am very well, if at all, at 4am.

3. It’s just too damn early. No one should be awake at 4am.

But in order to get to my two-day federal grant preparation conference for work a few years ago, I had to take a 6am flight from upstate New York to Nashville. Not a bad flight, not too long. Only one connection, which I appreciate. So I just hoped and requested that brain and bod could pull it together at 4am and get me on the flight.

I had my list of items to make sure that I took from house to shuttle, from shuttle to airport. It didn’t occur to me that I needed to put “insulin pump” on my list. It also didn’t occur to me that I might not remember to reconnect said pump after my 4am shower.

I left the pump balanced on top of the towel bar in the bathroom, something I never do and had never done before that crazy morning. I realized that my body was missing the vital piece of equipment as I was going through security. No going back now, and the airport was a half-hour away from home. Even if my partner could race to the airport at this ungodly hour with pump in hand, I wouldn’t be able to get it, go back through security, and make my plane to the conference that started in a few hours. Plus, did  I mention it was 5am at this time? Lovely partner was not going to be happy if she did wake up for my phone call, which was unlikely.

I also realized that I had extra tubing, humalog, and other supplies in my carry-on bag, but no lantus or syringes.

In full-on emergency-response-crisis mode I get on the plane to Nashville, knowing that the BG is rising, it’s going to be a few hours before I get to my final destination, I”m starving, and I can’t have anything to eat. I get a giant diet coke from somewhere in the airport, thankful that at least I can have my morning beverage, and suck that down during the first flight. I call my partner before the flight takes off, ask her to call my endo and have a new Rx for humalog, lantus and syringes called into the closest Walgreens to the conference hotel, which I’ve never been to and have no idea where it is. (Can I just say how amazing my partner is and how much I love her always but even more so when she does stuff like this? She’s beyond wonderful.)

The shuttle driver from the Nashville airport to the hotel was so very sweet, in a way that might have been just pure Southern hospitality, but I sure appreciated it regardless. When crazy girl (me) boarded the shuttle and asked, “Is there any way we could stop at the Walgreens on XXX Avenue, close to this hotel, because I forgot some very important prescription medication at home in New York and need to pick it up at the pharmacy?” He said he could use a cold beverage and would be happy to stop for me.

So he did, and my lantus Rx and syringes were there, and it all turned out okay. Except I had to remember to give myself shots for the next 2 days, which is hard to do when an insulin pump has been hanging off one’s bod for the previous 13 years. But I made it okay.

Recently I’ve become much better at carrying all kinds of possible d-supply needs with me almost all the time: novolog pen, pump supply kit w/ tubing, reservoirs, bottles of novolog AND lantus, syringes, alcohol swabs, skintac, lancets, etc. (in a cute little Clinique gift-with-purchase bag), extra test strips, glucose tabs even though they taste so bad, apple juicy juice boxes…etc. Lesson learned after not only this but many other d-blooper experiences.

And, I don’t take the 6am flights anymore. Not ever.


letters to dear dr(s). crappy and wonderfulendo

May 10, 2011

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There have been so many of you, I’ll just number you chronologically. Your offenses are very similar: condescending attitudes; inability to listen to what I shared with you; flat-out inaccurate information about this disease; labeling me “noncompliant” or “emotional” and then using that as an excuse not to provide the best medical treatment I needed…and so on. Here we go. (the yrs. old = my age when I saw these drs.)

Dr. Crappy #1 (7 yrs. old): You misdiagnosed me, leaving my mom with “she’s got a flu bug” which several weeks later became me almost falling asleep in the pool during swim lessons. How could you not smell the ketones on my breath? I was drinking at least a gallon of water a day, falling asleep sitting up in the middle of the afternoon, and spending the rest of my time in the bathroom peeing everything out. Easy enough to get urine in a test tube when it’s coming out of me so frequently–WTFructose?! Shame on you.

Dr. Crappy #2 (7-17 yrs. old): You were pretty much the only endo in town. You labeled me “overweight” and “an emotional eater” when I was 10 years old, and I wasn’t overweight (I have my medical file from your office). Every time I came to an appointment, you told me to lose weight. At what point might it have occurred to you that another approach would be helpful? Never?  I attribute at least part of what’s been the story of my life with craptastic body image, eating and exercise behaviors to you.

Dr. Crappy #3 (19-20 yrs. old): You refused to provide medical advice for my diabetes until I lost weight. You have type 1 diabetes, and prided yourself on averaging about 65 mg/dl at any given time, and keeping a bottle of glucose tabs with you everywhere and just “popping a few” as needed–but not too many, watch out! Many times you compared yourself to me with disparaging comments about my weight, my (lack of) BG control and overall “noncompliance.” Thinking of you still makes me cringe.

Dr. Crappy #4 (35-36 yrs. old): You upped my basals constantly based on what–my HbA1c? Because I sure never gave you any BG data to base any decisions. Most of the rest of your patients were type 2, and your nursing staff constantly forgot that I have type 1. Due to your misinformed increases in my insulin ratios, rates and all else infusion pump, I ate all. the. time. and ran low all day, needing more and more food and sugar just to be able to think for a minute. I firmly believe that many of the other meds I “needed” during that time weren’t really indicated, because my symptoms were coming from always being low. I do admit that had I tested more than twice a day (on a good day), I would have had ample data to fight back. But you shouldn’t have been changing anything without that data anyway.

Dr. Crappy #5 (37-38 yrs. old): I am grateful that at least you knew that #4 had me on way too much insulin. Very grateful. I’ll admit that. But, you went way over into the other end of the pool, with your low-low-low carb diet recommendations and strong suggestions that sound just a little bit anorexic-crazed. I’m really glad you never broached your trademarked nutritional protein supplement food replacement thing to me, because I would have lost it on you. Your staff doesn’t know the difference between types 1 and 2, and one said (in the same breath) “Your BG is too high, you need to watch that. I had a patient die from going too low, though, so watch out for that.” You’re also a little lazy, wanting me only on a Medronic pump because the rep hangs out at your office every week, then suggesting the Omnipod because a colleague of yours loved it. Do some research, find out what’s available and then talk options! I will say THANK YOU for writing the letters for my Animas Ping and Dexcom cgm, but you didn’t even want to know how they worked! That’s just weird. Get over yourself.

WHEW! Enough of that ickiness. Nice to get it out there, though. Now, on to the good stuff.

Dr. WonderfulEndo #1: (21-32 yrs. old) THANK YOU for telling me “it would be better if you could lose some weight, but it’s not necessary in order to get your BG under control. You don’t have to be skinny to manage the type 1.” Thinking about it almost makes me cry. You provide the best, most current, most supportive treatment for your patients regardless of their circumstances, and that is so incredibly rare. Here is where I apologize for still not testing more than 2-3 times/day and not providing you with decent data so that we could make the best decisions about my care. We could have done great things together–and I am so grateful for all of my appts. with you. Then, when I didn’t have great or much insurance coverage you didn’t collect anything over the amount billed to insurance. If you hadn’t done that, I would have had to break up with you. SO GLAD that I didn’t have to! You. ROCK.

Dr. WonderfulEndo #2: (38 yrs. old-present day) THANK YOU for listening to me, sitting with me for up to an hour at a time, and looking at my crazy logs of 15 BGs/day and everything d-related, speaking to me as an intelligent person with 30 years of experience. THANK YOU for talking to me as a problem-solving partner. THANK YOU for treating me as someone capable of doing the necessary things, even though they’re hard, in order to take better care of myself. THANK YOU for saying “we can figure this out,” and then helping me do that! THANK YOU for making it easier for me to “tweak” boluses and basals, and for only taking on 1 “tweak” at a time–not my entire plan for my entire day, because that doesn’t do anyone any good. You. Also. ROCK.

p.s. to WonderfulRD/CDE and WonderfulNP/CDE (38 yrs. old-present day) THANK YOU for listening, for laughing and crying with me, for looking at my numbers and logs and ALWAYS asking gentle, positive questions about what I CAN do, never chastising me for what I haven’t done/didn’t do. THANK YOU for alerting me to the fact that I’m a big correction stacker–I’m still trying to limit that a little. THANK YOU for making certain things sound possible, and for celebrating with me when they are! I cry just thinking about how much you’ve helped me. Looking forward to all kinds of goodness to come…and can’t believe I just typed that about my d-team: it’s such a relief, a joy, and a privilege to have medical providers who get it, and who can bring it. It’s about time.


admiring our differences: me & type 2

May 8, 2011

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When I was diagnosed with juvenile diabetes at age 7, it was 1980 and I lived in one of the larger Montana towns (an oxymoron all onto itself, as the whole state has less than a million people). The diabetes education classes put on by the hospital were full of people my parents’ ages, and I was taught alongside of them in exactly the same manner. We learned diabetes exchanges and signs and symptoms of being in ketoacidosis, and the rest of the class would talk together and bond at breaktime. If any of them spoke to me, the common first question was “you’re so young–are you on insulin?” When I said yes, I got the requisite “oh, you have the really bad kind” or “I could never give myself shots” or even “I’d die if I had to do that.”

At the same time, the awful endocrinologist I saw from the time I was diagnosed until I went to college started with the “you could really stand to lose some weight” advice. (Hindsight being whatever it is, I now know there are about a zillion different things Dr. Crappy could have said that might have been helpful to me, along with acknowledging that while I may have been a couple pounds more than ideal for managing type 1 diabetes, I was not obese.) My mom, caring for me and only wanting what was best for her diabetic daughter, and wanting to follow doctor’s orders to the best of our ability, signed me up for regular dietician appointments and even weight loss programs at the hospital. There I met even more middle-aged or older people with type 2 who said a lot of really hurtful things (even if they didn’t realize it) about me, my type 1 diabetes and/or my weight, and helped me start down a harmful path of really terrible body image, learned helplessness, and serious denial that I could do anything about either managing diabetes or my body weight.

So there’s my type 2 damage. Then when I was in my mid-20’s, I made a friend who was a hard-core volunteer for a non-diabetes-related nonprofit where I worked. She was forty years my elder, but acted like she was exactly my age. She was a talker, like me, and loved to meet new people. We started getting together for lunch and chatting every so often. She noticed that I had an insulin pump and asked me about it. She shared that she had type 2 diabetes, which she was trying to manage with diet, exercise and metformin. We talked about both of our diabetes (mis-) management issues. We bonded over (too many) doctors like Dr. Crappy and other misinformed and unhelpful medical providers, and she rejoiced with me when I found my first Dr. WonderfulEndo. She didn’t make assumptions about what I was dealing with, and I learned not to do so either when it came to her life with type 2.

My friend E. did something that no other type 2 had done for me before: She asked about my experiences with type 1, listened to my answers, and bonded with me over the similarities, both negative and positive, with her type 2. She was the only person with whom I spoke at length about diabetes for months at a time, as I was out of touch with my diabetes camper and counselor BFFs during my 20’s, before the internet and Facebook were really cooking. She talked with me about how various exercise and food combos made her feel; how doctors and dieticians who were condescending and know-it-all about diabetes were almost worse than the ones who were ignorant; and my own fears and struggles with food and weight (all that early education and “awareness” having gained me about, oh, 65-70 pounds since high school…along with whole ton of shame and stigma and self-hatred). We shared about our all-too-common frustrations with insurance (or lack thereof) and HMO plans, medications that did one thing when they were supposed to do another, and HbA1c results that didn’t match the amount of time we were spending on diabetes. She loved hearing about my new pump or meter technology, and I cheered her on when she exercised at her gym or took a new movement class.

E. was an inspiration to me, and one of the best people I’ve ever known, with or without diabetes. She died a few years ago after fighting colon cancer for several years. I miss hearing her voice on the other end of the phone, asking “So how’s your diabetes going? How have your numbers been? Have you had any Chick-Fil-A lately? When did you last see your dr?” She taught me that people with types 1 and 2 have so much more in common than we are different. We just need to be open to asking questions about each other’s experiences, and gently listening to the answers.

(Love you, E. My last HbA1c was 5.8, can you believe it?!)

Note: I’m sorry to say that I haven’t read a ton of blogs by people with type 2–yet–but I must say that Bob Pederson’s t minus two blog is just what the web address says: Worth every penny. Also insightful, funny, thoughtful, and real…very much like life with any type of diabetes. I’d refer E. to Bob’s blog (and his featured blog at Diabetes Daily, too). She’d like him as much as I do.


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