One of classic rock artist Tom Petty’s great tunes is called “The Waiting,” and the chorus proclaims that “the waiting is the hardest part.”
Well, when it comes to diabetes doctors, Tom Petty got it wrong. That’s not the case. At least not for me.
No, the waiting to see my endo is actually the easy part. Scheduling and actually going to my appointments is the hardest part in my Diabetes World.
Case in point: It’s been close to a year since my last visit to my endocrinologist. I’ve had a couple visits on the books, but for general life busyness I have cancelled them all — including the most recent one that was set for Monday, Jan. 21.
This isn’t a new phenomenon for me, and it’s not a one-time isolated occurrence either. It’s the same kind of avoidance I found myself slogging through at this time last year, when it had been 10 months since my last endo encounter. This past summer, I’d mulled over the idea of changing endos and actually going to see a new doc who’s a fellow type 1 PWD (person with diabetes). But I didn’t…
Maybe I can blame the fact that I’m a guy, and we’re more likely to procrastinate when it comes to taking care of our health.
Looking at my meter, the 30-day average of 244 makes me cringe — 
that comes out to an estimated 9.0%, according to this A1C conversion calculator. And that’s not even going back to previous months in 2012, when my routinely high BGs probably pushed me into the A1C double digits. YIKES!
This is no way to live. Things need to change… no, “things” don’t — I do.
Today is Feb. 1 and it’s my 34th birthday.
In just over a month, I’ll hit my 29th year of living with type 1.
So, it’s time to step up and get back on track.
2012 was a year in which I focused on change — career change (by joining the ‘Mine) and dealing with my own mental health challenges. But D-Management kind of fell to the back burner. Months on end were filled with diabetes burnout, and even flipping through the pages of the book Diabetes Burnout by the great Dr. Bill Polonsky didn’t help kick me into gear. Maybe right now it’s just the time of year, since winter is typically a season filled with more gloom thanks to colder weather (particularly here in the Midwest) and being stuck inside more often.
Why did I cancel this most recent endo appointment? Sure, it was a busy work day for me, but a couple of hours away from my computer wouldn’t have set me back too far. Instead, my biggest reason for cancelling was that I simply dreaded the visit because of an expected high A1C, scolding from my endo, and just feelings of inadequacy when it comes to my D-management routine for the past year.
Recently, I read Riva Greenberg’s new book offering tips and tricks to doing better in life with diabetes. (Don’t forget: Today is the last day to enter our current giveaway for that book!) At first I didn’t think I’d get much from it. I thought much of it didn’t apply to me, because so much seemed so obvious. But one of her tips stayed with me, and just hit me with full force the other day. One of those “Do’s & How-To’s” she wrote about was knowing your A1C, blood pressure, and cholesterol. Geez, Amy co-wrote a whole book about knowing your numbers a few years ago, too! Of course, I know the importance of this trio and why these test are necessary and critical health barometers. But it’s been so long since I’ve seen my endo… I just don’t know what my numbers are right now. So in a sense, I’m flying blind. A first step is to get a handle on my numbers and, taking some more musical inspiration from Tom Petty, Learning to Fly the healthy way once again.
Earlier this week, I re-connected to my insulin pump for the first time in about two months. I had taken a pump hiatus for the third time in as many years, trying to motivate myself late last year to get back in the swing of things by mixing up my D-routine up. Unlike the past two pump breaks, this one didn’t do the trick; I deterred from over eating (thanks to my emotional eating habits) by the need for the extra task of injecting rather than just pushing a few buttons; and my blood sugars were just as high as they’ve been in a long time… So unlike my past MDI experiences, I doubt this one will lead to any drop in my A1C.
But it feels great to be back to pumping, even though I’m using an older pump that’s now out of warranty as I anticipate the release of a next-gen device later this year (soon, I hope!). Surprisingly, my BG readings have been pretty stellar this very week, although it’s been a busy one, and that is helping me stay motivated to take better care of myself.
Scheduling a visit with my endo is next on the list. The time for waiting on that is over. Along with lab tests, I need to also get some other checkups and tests done, including a long-overdue stress test to check on my heart function. Today would be the perfect day to do that, actually, since it is the start of American Heart Month. This is Wear Red (for Women) Day, too, but I’m a little conflicted since I usually wear blue in honor of Blue Fridays. Clothing aside, the point is that I’m finally stepping up to put my diabetes health first.
So, as Tom Petty might sing: it’s time for me to head into the Great Wide Open, to avoid having a diabetes Breakd
own, and get back into my swing of things Learning To Fly again with my endo. You know, because we want to avoid those blood sugar “excursions” that can make you feel like you’re hanging out in a Room At The Top of the glucose world, and then subsequently Free Fallin’ off a cliff into that scary hypo abyss.
In case you couldn’t tell: I’m a Petty fan. C’mon, it’s my birthday… let this classic rock lover have his fun!
OK, musical reference aside… It’s time to get on this.
{NOTE: Amy says she’s also guilty of endo-crastination; hasn’t seen her doctor in many months 
.}
Since we’re only a month into 2013, it’s a perfect time to make those changes happen and put an end to our endo-crastination.
Oh, and that endo reference reminds me of one last little nugget of D-humor from a fellow DOC’er, who tweeted recently: “Why are diabetes docs called Endos if they can’t end my diabetes? At diagnosis, they should be called Startos!” HA!
)
Good post, Mike! Also, pretty damn courageous to bare yourself like that to the world.
Happy Birthday and here’s to the first day of the rest of your life!
Mike, I know the feeling of dreading visits to the endo. Busy schedules are one thing, but fearing what happens there is quite another. I once confessed to an endo that I was “afraid that he would yell at me”. He looked at me like I was insane. He’s not going to yell at me, he reassured. I’m an adult and I ultimately am responsible for my own decisions. That answer kind of changed my feelings from that day forward about going to see my doctors.
I suppose that, having diabetes since childhood, we were brought up with the mentality of following other people’s rules and getting scolded when we didn’t. I suppose diabetes is the last context in which I truly considered myself an “adult” — and it took until I was in my 30′s to realize that.
Nobody else is in charge of you anymore. You don’t have to Live Like a Refugee.
Mike, I think it also is personally courageous of you to let many know the intricacies and frustrations of our illness and the feeling of self-intimidation as well. I have put off seeing my endo too, but it was only for a short period of time. They, DE and Endo, are quite understanding, but it is my own personal frustration that comes through – and I am a type II of all things. Just got put on the pump and I can say that even after a month and a half, it has given me hope and less pain of 7 shots per day. Blessings to you as you manage all the things about this weird disease.
Mike – Thank you so much for sharing this experience!! My son is a recently diagnosed type 1. We just hit the 2 year mark and he is 14. Add puberty, hormones, general teenage “You can’t make me” attitude and I was dreading our quarterly Endo appointment. Sure enough, by the end of the appointment we were both in TEARS! Our endo made us both feel so bad for not having better control, not checking enough, etc….. She made me feel like a HORRIBLE mom for not checking enough and monitoring my son better. Believe me, I know we can and must do better. Yelling at us at our appointment is not exactly the best way to meet that goal.
We are still learning how tough this is. I stress “Learning” as we are still struggling to know how and what to do. What we do one day does not work the next. We have been on the pump for just a year and the Dr. said she would take it away if we didn’t get better.
Honestly, an endo who treated me that way, no matter what my control was like, would get the boot. A few things you probably want to consider is it might be helpful to get counseling to help both of you deal with this transition. I’m 47 and was diagnosed 3 1/2 years ago and the psychological repercussions are still pretty fresh in my mind.
Does your son know any other Type 1s his age that he could hang out with and learn from? There is nothing like talking to someone who’s been where you’ve been and come through it to achieve good control. Talking with other D-Moms & Dads would be helpful for you, too.
Letting him know that you want the best for him and want to help him do his best–even at the sullen age of 14– is helpful. I know exactly what you mean when you say you do the same thing two days in a row and get different results. That is just the way it is sometimes. Hang in there!
Lisa: I’m so very sorry that you had to go through that experience with your endo… NOT cool. Like you mentioned, we KNOW pretty well how we’re doing and it’s typically not a surprise – getting berated like that only makes us not want to be diligent and do what we need to. Especially during those teen years (I rebelled pretty hard when I was a teen). I’ve now been at this for close to 30 years, and every day I am still learning how to best manage and keep myself motivated to stay on top of my D-Management. Sure, it’s so easy to judge ourselves by numbers, but we do our best to see it as a progress report with info to help us make the next move. The peer-to-peer support of the DOC and other people with diabetes my age have helped me in some of the toughest times, and it’s that kind of support our medical professionals are sorely lacking. I’m also not a fan of the whole “do better or I’ll take this D-gadget away” mentality… think again, it just reinforces how poorly we may be doing and that we’re being punished by “bad” numbers. Here’s a virtual pump bump for your son… and best your way!
The thing I’ve been putting off are all the other important tests, like a sleep study (because after a family weekend they said I snored–and then would stop breathing for 12-20 seconds at a time).
Go after that endo appointment and find out where you’re at so you can plot your course of action. Don’t stoop to blame, but remind yourself that, every day, you’re doing the best you can do to take care of yourself. That includes when you’re control isn’t great.
That you know you’re not cutting it proves that you care and that the motivation is there to do better. Latch onto that and don’t hesitate to ASK FOR HELP from those around you (and your D-friends online). We all need that accountability of someone knowing what you’re struggling with. and remember, you are not “a rebel without a clue.”
Hi Mike and everybody involved with Diabetes Mine –
Happy Birthday and thanks very much, Mike, for your honest post. This is my first visit to this blog. I am 50 y.o. and was diagnosed with diabetes at the age of two.
After decades of varying degrees of denial and too many hypoglycemic incidents that prevented me from thinking straight, I finally feel like I’m close to managing my blood sugar levels as opposed to letting them manage me. But I’m not there yet, even though I’m trying hard, and I’m frustrated.
I think I have two big problems in this regard: 1. no ongoing relationship with a good endo dr. because I have not yet found one who works for me. (I live in NYC.) 2. a not very rational but persistent resistance to using a pump. I tried one once many years ago. I did not like it, and it malfunctioned, and I have not yet brought myself to try again.
I would very much like to hear from other diabetics who have had to talk themselves into using the pump or who have decided not to use it and are doing well with syringes. And if anyone can recommend a good endo dr. in NYC, I would appreciate that, too.
With lots of gratitude for the post and the site,
Lisa
Lisa: Thanks for stopping by and leaving a comment on your first visit! Always great to “meet” another D-Peep in the DOC, especially someone who’s been living with diabetes for as long as you have. YES, we have many readers in and around the NYC area who are probably the perfect ones to help you pinpoint an Endo who “gets it” and can help you. I’ll put the word out via Twitter. Same with the topic of pumping v. no pumping… depending on how long ago it was, maybe some of the newer, more modern pumps might fit your fancy a bit better these days. One thing I’ve learned through the years is that there might be ways to actually try out a D-device like a pump for a few days before deciding to invest that kind of money into it… that might be something to check with any “newly-found” endo on, and maybe even some of the pump manufacturers and local reps in your area. You never know, and it doesn’t hurt to ask! Let’s stay in touch – would love to hear how everything goes. Thanks again for the great comment!
Thanks a million. What a great resource! And happy birthday again!!
I’ve gone back to the pens from the pump due to a bubble issue that couldn’t be resolved. I worried about switching from micromanaging basal rates to figuring out the timing of split doses of Lantus. Maybe it’s because things were so horrible with the bubbles (40-400), but this last month has brought some happy surprises: being able to wear a slinky dress again, sleeping au natural, the freedom of no tubing, the variety of places to inject. not to mention not worrying every moment, waking and sleeping, whether my bg was going to start to soar because I wasn’t getting insulin. For the first few weeks, I used syringes, and got better at using them. Don’t have that count to 10 thing with the pens, and I felt like a real Badass, but finally caved to societal pressures.
I wouldn’t have been able to do this without my endo and CDE. Especially when I’m ricocheting between hypo and hyperglycemia, it’s hard for me to see patterns and solutions. And sometimes it’s just helpful when they recognize that not knowing how much insulin my pancreas will produce at any given time (I’m LADA), makes it really hard for any of us to figure out what to do without making things worse.
Hi Lisa! I’m a T1 in NYC and I’ve done both injections and pumping. Here are my thoughts:
I highly recommend the Naomi Berrie Center on 168th. You may have heard of it already, but I go here and the service is generally excellent. My endo is Dr. Golden, and she’s fantastic– unfortunately, she’s a bit TOO good and so I can usually only see her every 5 months! So I doubt she’s taking new patients, but you can contact them and see who is. Dr. Freeby has also come highly recommended. Their website is http://www.nbdiabetes.org
If that doesn’t work, then I’ve heard good things about the Friedman Diabetes Center at Beth Israel (17th St.)
As for pumps, I think it’s best to lay out all your concerns with your endo and go from there. I didn’t hesitate for a second when I went on a pump 4 months after diagnosis. I had great success for 7.5 years until I had problems with absorption, and switched to pens in 2011. My reasoning for sticking with pens is similar to Mary Dexter’s, and my A1C is the best ever– so why not?
Best of luck!
Thanks, Mary Dexter and Caroline, for replying. It’s reassuring to read that pumps aren’t the only way to manage this disease well. And Caroline, I really appreciate the info on the diabetes centers. I will check them out. Many thanks!!
Happy Birthday, Mike!
I too procrastinate with my endo visits, particularly when I’m sure I will have a disappointing A1c. I like my doctor and CDE very much and I hate giving them bad news.
Time to man up, though. This year I’ve resolved to be proactive and give them good news on each visit, rather than chasing the good news and only visiting when I think my control has been good. After all, I need them to help me keep good control, not just pat me on the back for doing it on my own! Otherwise, why see them at all?
You’re doing a great job, by the way!
I don’t think you need an A1C test to know your blood sugars are high. Tell your endo you don’t want it because it isn’t going to add anything to your management and is only going to depress you. Frequent blood sugar monitoring tells you much more than an A1C. An A1C what give you any idea what you need to do to improve your control. Blood sugars tell you where to start and concentrate.
It sounds like you need to talk to your endo about what will work for you to improve your control, even if you don’t get to where you would like. If you dread the pump, take it off. If you hate taking so many shots – wear the pump. If you want more flexibility, talk to your endo about taking about half of your basal as lantus once a day, so it is easier to take pump holidays when you want for shorter times. It doesn’t matter so much what you do, but that you work with your endo to be creative so you find it less painful to take care of yourself. Pick one goal first and try to meet it (even if you have 10 goals). As you mentioned, you will feel better if you are able to do something that gives you positive feedback, even if there is more you would like to do.
After you have your stress test, consider getting more exercise – those endorphins improve your mental outlook and the exercise helps get the blood sugars down without putting on weight like taking extra insulin. You are more apt to get exercise if you do something fun or social – go dancing with your wife? ice skating? If you hate exercise, at least try to walk when you can if you don’t get frostbite outside in the winter. Try to catch what little daylight there is – makes you feel better mentally. When you work at home, you sometimes need to schedule “time out of the house” just to air your brains out.
You have mentioned you have gone for psychological counseling. I hope you are talking with your therapist about how much you hate taking care of your diabetes and your difficulty going for appointments with your endo.
I think it is great you are sharing your struggles with others. You are not alone and I’m sure many readers feel a little less bad about their own shortcomings knowing there are others who get diabetes burn out and really just wish they could at least take a “diabetes vacation” (not just a pump vacation) and hopefully have a cure soon. In the meantime, I hope you can cope, so you are healthy when the cure comes and you can enjoy it.
Great post Mike, I hope that many guys like yourself who are lucky enough to read this will get a spark to do better about taking care of themselves and making the necessary trips to the doctor. We can be a stubborn bunch when things aren’t convenient, but we owe it to ourselves to push past our own stubbornness in favor of health and putting ourselves first.
I hope your birthday is a great one! From a fellow Tom Petty fan.
Endo? We’re supposed to have an Endo?
Happy Birthday Mike and thank you for sharing. Where I live diabetics see their endo every three months and make the next appt before leaving the office. They also review data between visits. My endo reviews my CGM data every two weeks and makes changes to my pump. I think the in between help is essential because managing diabetes takes so much. My endo works very hard. He called me at home this morning to tell me to see a patient in the hospital again for changes that had to be made. I wish you’ll could find an endo that works for you. I do have to admit I hate going to see him even though I love and respect him. Must be the guilt we carry.
SUPER, MEGA HAPPY BIRTHDAY to Mike today! Love ya!
(Oh, and a shout-out to my Endo… see u soon, promise)
Happy Birthday Mike. I have done this avoid the Endocrinologist game my self at least once or twice. I have a really hard time hearing your a bad diabetic because things are higher or lower than they should be. I know that is why I have a new Endocrinologist. I would tell the Endocrinologist when you see them that you are feeling burnt out and you are just starting to work on it. My new Endocrinologist was really glad I told him I was burned out and took it easy on me. I am hoping when you do go that the appointment goes well.
happy belated birthday.. and thank you for your informative, insightful posts! 29 years? wow! congratulations.. and thank you again for sharing your experiences, your knowledge, and being an inspiration to others.