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Healthcare Hamster Wheel.

For the last few years, doctor’s appointments have felt like an exercise in “checking the boxes.”  Yeah, I called and made an appointment with my endocrinologist.  Yeah, I had my A1C drawn and the result was either given to me that day or a week later by way of calling the clinic.  Sure, I get weighed and we download my Dexcom receiver and my pump settings and my meter.  Yep, let’s look at the blood sugar trends.

It’s impersonal.  An odd contrast to how intimate and personal type 1 diabetes is.   And a challenge to be motivated to make the effort to visit my endo when it feels like an exercise in checking boxes, kind of for both of us.  Nothing happens.  I don’t want anything dramatic to happen in terms of my health, but the cycle of going to the endo every four months or so feels like I’m a chronic disease hamster wheel.

I don’t know if it’s the frustration of the healthcare system or frustrations with the relentless monotony of diabetes, but I drag myself to the endo’s office, even now.  Usually, I schedule my OB/GYN appointments and my endo visits for the same day (making it one full day of doctor’s appointments in Boston instead of two), but the only appointment I actively care about is the OB/GYN.

The experiences are completely different.  My OB/GYN is in a relatively small office and I’ve never waited more than 15 minutes to be seen by the doctor or nurse.  The nurse takes my weight and blood pressure and we run through the information on chart, checking the baby’s heartbeat and talking about what’s happened since I last saw them, and what to expect for my next visit.  My OB comes in next and we may or may not do an ultrasound (depending on what week in the pregnancy I’m at).  Of course these visits are more interesting, right?  Pregnancy has a set of milestones that are reached quickly, and the whole process is complete in a set number of weeks.  It’s kind of unfair to compare OB visits to endo visits.  But during the visit with the nurse and then with the OB, they are looking at me.  They are making eye contact with me.  It seems like an insignificant detail, but it has the most significant impact.  In these visits, I feel like a human being, receiving care for the whole of me.

The warmest, most humanizing interaction at the endo’s office should not be the one where the woman I held the bathroom door open for thanked me and told me to have a happy Easter.

At the Joslin Clinic, I’m asked to arrive 20 minutes early for my appointment and I do, only I’m rarely seen on time.  (Last week, I had to go through the “Do you have insurance?” song and dance, despite the fact that I’ve been at the clinic at least three times this year alone and they’ve properly billed my insurance company.  Yet somehow my insurance information was missing and we spent ten minutes re-entering it. Waste of the receptionist’s time.  And mine.)

My last appointment was at 11.40 am.  I was in the waiting room at 11.20 and wasn’t called in for labs until 12.19.  I didn’t see the doctor until 12.35.  And as much as I respect my endo for all of her expertise and the care that she takes of her patients, I feel exactly like a cog in a machine during those visits. Few moments of actual discussion.  I spent several minutes last visit staring at the ceiling while she reviewed notes.

“Have you had recent weight gain?  Fatigue?  Have you been waking up to urinate in the middle of the night?”

I leaned in.  “I’m pregnant.  Yes, to all three.  Hi.”

Boxes are clicked on a computer screen instead of an actual discussion taking place, and that kills me because she’s a better doctor than that.  I received an A1C value that was the lowest I’ve had in my entire life, and yet it felt like another box checked instead of even the briefest of high five moments.  Shouldn’t victories be celebrated?  Shouldn’t interactions be warm?  This past visit, lab work I had drawn during the previous visit wasn’t in my file, frustrating us both. The whole botched system makes it difficult for my endo and I to even have an effective relationship.  I feel like she’s forced to work within the expectations that the healthcare system has placed on her, and I try to picture what her day must look like, with patient after patient being shuttled into her room, the demands on her time borderline bananas.

But then I remember that I don’t have to care about all the other patients.  My doctor does.  The perspective is useful, but I’m the one patient I care most about. Especially these days, since more than just my one body depends on my good health.  And lately, my experiences at Joslin are very disappointing. I’m spoiled rotten to be a patient at one of the best diabetes clinics in the world, aren’t I?  Longwood medical center care is worth the two hour drive from my home in Rhode Island, isn’t it?  I’m healthier because of those doctors, right?

I’m not sure anymore.  My health outcomes are a product of the access I have, the work I put in, and the expertise of my medical team.  Not one or the other.  I feel like I stick it out with Joslin in anticipation of the complications that may come, not as a method of preventing them.  I want a diabetes team that sees me as a whole patient, not just a pancreas or a set of eyeballs that need screening every few months.

I will see this pregnancy through at Joslin pregnancy clinic because it worked well the last time, and I want the best for my baby.  But I’m already researching local endocrinologist offices for after the baby is born, in effort to feel like a human patient interacting with a human doctor, in a system that recognizes people over paperwork.  I’m done with HCP visits feeling more frustrating than fruitful.  The time to take back my personal healthcare system is now.

48 Comments Post a comment
  1. I did not like Joslin for thos very reason. There is no way that you can’t do better. In my experience, it’s the individual physician that matters, not the big clinic name. And congrats on the lowest-ever A1C – kicking ass!!!

    03/28/16; 12:35 pm
    • I agree. It’s hard to shake the feeling that I should be at Joslin since I’ve been there for 30 years, but I need to let that go. After the baby is born, I’m endo-shopping.

      03/28/16; 12:40 pm
  2. Liz #

    This hits close to home I have been with my current endo for 10 years and I see the NP which is fine I get along with her. One of my last appointments she said oh what’s new… I said well since I’ve been here I have lost over 20 lbs dieting an exercising and she said oh that’s good then continues looking at the computer for the next question. I left bummed I had worked my butt off and she brushed it off. The weight loss was noticable thought that she would have noticed herself when I told a friend they said you are just a number on a page to them. And honestly they were right makes me sad that it’s like that and not more personable.

    03/28/16; 12:57 pm
  3. D Sturdiva #

    I finally bit the bullet and shopped for an endo that is closer after driving 45 mins each way to see the endo I’ve had since diagnosis – it was always a 30 min wait on top of the drive for what amounted to less than 15 min appointment where I was just asked what prescriptions I needed refilled (which I could send them through their online portal anyway).

    Unfortunately I haven’t been too impressed with the new place after a second visit. They don’t seem fond of the fact that I participate in clinical trials, and while the drive and wait are shorter and the time with the doctor is longer, I don’t leave feeling any more equipped to deal with the disease than when I entered.

    I find the list of Internet resources they hand out at each visit to be grating, and when asked to hand over my pump for download by the nurse I asked if they wanted my cgm receiver too, and her reply was “oh, you have two of them?” Maybe I’m unrealistic, but I expect this at any other doctors office, but I expect more knowledge of diabetes tech at an endos office.

    I guess my standard of care is just too high. Or I need to keep shopping.

    I hope you have better luck!

    03/28/16; 12:57 pm
    • Dee #

      I’ve recently transitioned to a pump, but for a year and a half, I went to Mayo Adult Endocrinology while doing MDI and wearing a Dexcom. Every single time I checked in, they asked for my pump (sigh) but would not take my Dexcom. My endo would get so frustrated when she walked in only to find my CGM data yet to be downloaded. You’d think a place as respected as Mayo could get their CGM data retrieval process straightened out within 18 months, but no.

      03/28/16; 11:48 pm
  4. Pregnancy and a lowest A1C! Hurray for you and the baby!
    I’m on my fourth endo – this is the one I’ve stuck with the very longest and – I’m happy. She’s also the longest drive but – it’s worth it to me.
    One thing I do is alternate between the endo and my pcp. Still do the 4 month A1C and share that and all lab results with both of them.
    And the endo – she talks to me, not her computer – well, unless she’s replying to an email from me. 🙂
    Sending calm pregnancy thoughts to you!

    03/28/16; 12:57 pm
  5. Susan #

    “Have you had recent weight gain? Fatigue? Have you been waking up to urinate in the middle of the night?”

    I leaned in. “I’m pregnant. Yes, to all three. Hi.”

    – I definitely remember those questions and my same glib responses when I was pregnant!

    03/28/16; 1:04 pm
  6. I had no idea things could be anything less than spectacular at Joslin! I’ve been thinking of it as the ace up my sleeve—like…we are so lucky we live close enough to paradise that we could go there, to paradise, and meet seventeen peds. endos, each more fabulously friendly and amazing than the next.

    03/28/16; 1:10 pm
  7. andy #

    I know too well what you’re talking about! I refer to my endo as a prescription writer! Unfortunately that’s all I get. Literally I wait ( always late of course) he walks in I get some minor judgment passed at me he writes any scripts needed and I leave. I’ve never had a good one. One time I had a np that was awesome he also had type one and got it. Too bad he left for the west coast. Wish I could have moved he was that good. Thinking of going to my pcp for my diabetes care it couldn’t be worse. Good luck.

    03/28/16; 1:30 pm
  8. Amy #

    I have great, personal experiences at Joslin Pediatrics with my CDE. The endo is okay, but more like what you have described. Our CDE is the one we feel we can go to with questions, the one who makes us feel cared for, empowered and like we are all part of a team trying to manage my 8-year-old’s diabetes. When people ask me about our endo, I usually answer with a response about our CDE. She’s the best. The endo is exactly like you describe above.

    03/28/16; 1:44 pm
    • I have had really good experiences with many of the Joslin CDEs. I think they are given more leeway to actually talk with their patients. I fear that the endos are put through the paces in an unfair way.

      03/28/16; 4:59 pm
  9. I had no idea you’d ever felt this way about Joslin. But I definitely agree with everything you’ve said here, and I think endo-shopping once the new baby is out and about is a really smart idea. I absolutely think you can find a practice that can both help keep you at your healthiest and make you feel like a person rather than a cog.

    03/28/16; 1:49 pm
  10. I can definitely relate to this, especially as I near the end of my pregnancy here. With three weeks to go, my Endo visit last week ended with “ok, and I’ll see you in May instead of next week” – during which I detected a sign of relief on his part. As if I’ve been an extra burden during this pregnancy on his schedule (in fact, I had to insist on more frequent visits the last few months as resistance set in).

    It has felt more like the purpose of these Endo appointments were to check my own assumptions and validate the changes I’d already made, or been considering, to my basal and bolus rates. It helped my peace-of-mind to know a professional was reviewing my work, but I’ve really been in the drivers seat. And I’m not sure if thats they way it “should” be.

    03/28/16; 1:56 pm
  11. Paige #

    Have you shopped around Joslin for a different Endo?
    I’m sure you’ve seen more than one in the past 30 years, but if you are feeling loyal to Joslin – I know there are some great, patient invested Endos there.

    03/28/16; 1:58 pm
    • My endo is the best in the business as far as pregnancy goes (she runs the pregnancy clinic), so I switched to her when I left pediatrics at the age of 24. Once I have this baby, it will be time to find a local, just-as-capable endo. My endo is not the problem, but the Joslin spiderweb that makes me crazy. They are never on time, never able to find my insurance/lab work/paperwork/etc, and I am frustrated at how the system itself is making my job as a patient and my doctor’s job as a healthcare provider hard to do well.

      03/28/16; 4:49 pm
  12. Do as many getting to know you visits as your insurance will allow. My friend, who no longer is seen by a pediatric endo used to have a Facebook page called We Hate Dr. ____. She and I both see the same endo now. Our endo is one of the finest Emory endos that there is, but she still spends most of the visit staring at the computer screen. At least she tells me what the cardiologists have put in the system. They are not so forthcoming. Still, I get 15 minutes with her every six months, I do wish she wasn’t staring at the screen for at least 10 of it.

    03/28/16; 2:55 pm
  13. Laura Gulley #

    Yes to everything you write here. You know, I love my endo at Joslin. Our visits are very short and quick, and he does have to look at his computer screen the whole time, and he doesn’t really have time to get into that whole “insulin dosing” thing and just says I’m doing a good job. But I can see how bright and experienced and knowledgeable he is even in the few minutes we’ve got. He’s low key and respectful, and when I ask him a question, he always has a thoughtful answer. And I have no idea how this excellent doctor stands his job. He is the hamster on his wheel in that office. I can leave after a couple hours, and he has to stay there every day. How do the good doctors and CDEs there not burn out? And how can this legendary clinic make things better? Whew.

    03/28/16; 3:40 pm
    • Exactly. All of this. Good doctors have their jobs made almost impossible by bad systems. 🙁

      03/28/16; 4:49 pm
      • Beth, who is not a spammer :) #

        SO TRUE!
        I am grateful that my daughter’s AMAZING endo (whom we lucked into at her dx, just because she was the one on call that day) left the peds clinic at the children’s hospital, and went into practice for herself. She will now be the Girlie’s endo until age 40 (which is a LONG way off) , barring the kid moving away as an adult. She currently comes home from college (2 hours) on vacations to see the amazing Dr D. She used to be rushed from the exam room after 5 or 10 minutes, and now she is rushed out after 20 (or more if needed). I’m willing to wait for a doctor who takes as much time as is necessary, but not for one who makes a person feel un-person-like.
        Wishing you the best on the post-baby endo search.
        🙂

        03/29/16; 12:12 am
  14. Sandy #

    I too had my lowest A1C when I was carrying my only child. I think all my doctors are like you mentioned. They really don’t understand what WE go through everyday to maintain our diabetes! April 7th will be 50 years with T1D. I think that’s pretty amazing and I think they should think so too….just saying. Boy, do I have the stories getting T1D
    in 1966!

    03/28/16; 5:12 pm
  15. e-i #

    A couple of years ago my endo greeted me with an unusual message. He said he was sorry but the rules imposed on him by the Affordable Care Act were going to change the way we interacted. He said he’d be doing less looking at me and more typing while he asked me lists of questions. I’d gone to him originally because my daughter said he was the first doctor she’d ever seen who listened to what she said and showed empathy. He also makes the Top Docs list in our area every year (doctors whom other doctors would choose to treat their own family members). He was frustrated. He does both of those things now-goes through the questionnaires that bureaucrats designed AND all the things he has always done: asks me how I am, congratulates me on my self care, examines my feet, examines my thyroid, palpates my abdomen, etc. I sometimes worry that he spends too much time with me. I see on my insurance papers what he was paid for my visit. If he spends that much time with people, how can he make a living? What will keep him in this profession? I’ve concluded that he is within a few years of retirement and has decided he isn’t going to provide less than the best care he can and has provided over the years and has sacrificed income to do so.

    http://www.forbes.com/sites/stevedenning/2013/04/25/why-is-your-doctor-typing-hint-think-agile/#1f226d6c2973

    03/28/16; 5:56 pm
  16. Miriam #

    I hated my pediatric endo, and when my father’s endo agreed to see me at 16 I was thrilled.

    I’ve seen many, many (many) doctors, and my endo is by far my favorite. He starts off by asking me how everything is going, not just how I’m feeling (he does that, too). He goes through all the things he needs to, but he’ll sit and talk about just about anything. He tells me things his grandkids said, I tell him about the guys I’ve dated. He congratulates people for having lost 3 pounds (I’ve seen him do this), and he doesn’t make you feel awful for having a crappy A1c. He celebrates the little changes and the big ones, and he makes you feel amazing for having come in that day. He’s known by everyone in my area who needs an endo, even if they don’t see him, as the best endo around. It’s a shame you don’t live in NY!

    I’ve gone through the runaround of trying to find the right doctor (most recently with an internist), and I must say it can be awful. But for the right doctor, and for the right fit, it is absolutely worth it. I wouldn’t trade my endo for anything, and though it’s quite a bit of time away, I worry that he’ll retire because I’ll never find anyone half as good as he is.

    I agree with your desire to stand by your endo until you have the baby, and it makes perfect sense. I wish you the best of luck in finding a new endo, and the least of frustrations in dealing with your current one until then.

    03/28/16; 6:45 pm
    • Kerri #

      I would love to know his name. I go to the Naomi Berrie Center, and I’m not thrilled with them.

      03/29/16; 5:42 am
      • Miriam #

        He’s actually not in NYC, but about an hour north of there assuming it isn’t rush hour. His name is Dr. Donald Zwickler. It can take a while to get a new appointment with him because the whole world wants to see him, but he gives you whatever time you need and you never feel rushed. The wait times vary between being seen early if you’re there early to waiting a half an hour in the waiting room, but I’ve never met a doctor who’s never kept me waiting at least once.

        03/29/16; 6:21 pm
  17. Ana #

    I switched to a “private” doctor last year and go for scheduled endo appointments at my regular health care provider for insurance coverage… Best decision I ever made!

    03/28/16; 7:11 pm
  18. This is exactly how I felt when I was pregnant with bébé2. My endo switch after my daughter was born wasn’t a completely ideal match in terms of care, but the logistics were so much easier that it made it worth it. no wait time, 30 min appointments, A1c results before I go to see her and a 10 min walk from home. She wasn’t a ton of help in getting me out of post pregnancy diabetes burnout but the DOC came through for me on that one. 🙂

    03/28/16; 7:54 pm
  19. Hollie Charles #

    I “divorced” my Endo several years ago. He was the best in Kentucky. Until he retired, I refused to go back. I had the same feelings you are experiencing, short of the pregnancy- – but with all the connections you have made in the industry and with the research out there, you will be able to get amazing healthcare! Proud of you for identifying this & for an awesome A1C! Go girl!

    03/28/16; 8:02 pm
    • Pam #

      Do you have any recommendations for a endo in KY?

      07/13/16; 1:57 am
  20. Joslin Patient #

    I’ve been having appointments at Joslin for about five years in pediatrics, adult, and also the mental and behavioral health clinics. I can’t agree more with this post. I almost feel pressured to love Joslin and talk about loving Joslin because of how Joslin is represented in the diabetes community, so it feels good to hear that I’m not having these thoughts all on my own!

    I went through what felt like a very regimented program to treat my diabetes-related eating disorder and consequential very high a1c’s and very out of control diabetes. YES, it was nice to be somewhere where you can rest assured they know what they are talking about. But there were many times where I felt like I was very vulnerable in quite a cold environment. I walked into that clinic and told them that I hadn’t taken insulin in a week, and I walked out the door with an appointment for a month later and a hand out on eating disorders. Yes, they’ve gotten my a1c from the 10s into the 7s, but I don’t feel healed — my paperwork just looks a little better.

    I think it is also worth noting that three of the doctors that I ended up really getting along with at Joslin (doctors who made that atmosphere tolerable!) have left Joslin in the past year alone -two in the mental health department and one endo. They didn’t discuss with me the reasons why they left, but it has felt strange to me. I’ve ended up going with them to their private practices and paying much more than I would be if I had switched doctors at Joslin, simply because they make it worth it.

    Having a mental health clinic in a diabetes clinic IS a hugely great thing! I cannot stress that enough — I absolutely think it should be commonplace. But the problem is that it is one thing to just SIMPLY have the clinic there, it is another thing to build that clinic up and make it worthwhile.

    I realize this is a bit off topic from your original post, but thought that this side of things may be useful to someone as well. Thank you, Kerri, for your candidness !!

    03/28/16; 8:03 pm
  21. Nolan Kienitz #

    Unfortunately virtually all doctors are hampoered by “the system” anymore. Government/corporate control of the medical system (a whole ‘nother conversation) is relegating our medical care providers to clicking on the check boxes.

    They are under mandates to meet certain criteria and it IS impacting patient care. I’m in the Dallas market and have an excellent network of doctors, but I’ve watched them having to always be at their computer screens checking off things to meet that visits criteria for the “corporation/government”.

    Most of my doctors still try (as best they can) to keep a close one-on-one conversation going, but it is not easy.

    03/28/16; 8:06 pm
  22. Laura #

    I was a patient of one of the best Endos in the country, but I always opted to see the PA because I felt he connected with me much better than the doc. (No offense to the doc, but wait times of over an hour and a half for a five minute visit killed me.) Then, I moved to Central Massachusetts, I started at Joslin. I was impressed by how up to date they were- I could download my dex and Ping in the office, and I got about 50 pictures of my eyes taken at the clinic at my first visit so they could get a baseline, not because I had a problem, but I was thoroughly unimpressed by the bedside manner, wait time, and connection to the doctor. Despite a1cs in the 6’s, and good blood sugar control, I was chastised for not doing things “their way”. I moved after about a year, and after some searching, found a great Endo here. He’s typically a Medtronic guy, but my willingness to use a dexcom and a tSlim was never questioned after I told him I hated being on a minimed. He is always friendly and engages me in conversation about my life as well as my diabetes. A good doc is hard to find, and my current Endo is overstretched in terms of how many people his practice handles, and I don’t know what I would do if he leaves for another city. Sometimes the big name in endocrinology just isn’t worth it. Good luck!

    03/28/16; 8:56 pm
  23. Sandy T #

    I don’t see an Endo anymore, I see the NP. They asked if i would be willing to see her instead. I reluctantly agreed. Best thing I ever did. I hate my endo (I still have to see him for my thyroid), but I LOVE my NP. She’s the best. And she knows me. She knew I was getting married last year. She knew my dad had cancer and wasn’t doing well. She asks about me before looking at the chart. I know her daughter had a healthy little one in the early fall (second grand baby), and that her other daughter was diagnosed with cancer around the same time. We discuss life before diabetes enters the conversation..maybe .because she knows life gets in the way of diabetes or because she cares. I don’t know why, but I ask because I care about her. I love that she knows me. Both the diabetic me and the real me. I feel VERY blessed to have found her and dread when she retires.
    Oh and i refuse to get to any doctor appt early. When I did I was never seen early. And when I get there on time…I’m seen in about 15 minutes. I’m ok with that.

    Good luck finding a better endo! And AWESOME job on the A1C!

    03/28/16; 8:59 pm
  24. Leah moynihan #

    I also dislike the Joslin systems for all the reasons you list. My doctor is so busy that I only see him every 6 months–he sees pts 1/2 day per week. But, he has gotten me through some rough patches and he talks to me. You are right to want more–that personal connection is priceless. There are some good endos in PVD–I hear good things from my patients. Good luck!

    03/28/16; 9:05 pm
    • I really do respect my endo and would continue to see her if the process wasn’t so broken.

      03/28/16; 9:54 pm
  25. Emily #

    What baby number 2??

    03/28/16; 9:46 pm
  26. Missy #

    I’ve been type 1 for 30 yrs and I’ve felt that any headway I make in getting my A1c down is my doing… No help from Endos or diabetes educators! I feel like I get it straight for 3 days then I have to transition to new segments because I’m running high or low… it’s just ever changing and most of the time I’m fed up. This is the first time I’ve tried to be a “good diabetic” I excercise, try to eat healthy, switched to a pump, wear a Dexcom, and it just continues to be a battle. do u guys have off days for no reason? Or is it possible to get this thing in check? by the way I’m at my lowest A1c now, a big old 8. If I get my numbers lower I’m constantly fighting lows. please tell me I’m not the only one.

    03/28/16; 11:00 pm
    • Lucia Von L. #

      We are in the same rotten boat. Just keep rowing- there have got to be some smooth patches coming! (I’m down to 8.2- lowest in more than a decade)

      03/29/16; 12:03 am
  27. I agree with you! I feel that I’ve received the best care for my diabetes when I was pregnant. You feel that they are more involved and are more concerned over your health than getting paid by the insurance.

    03/28/16; 11:37 pm
  28. Lucia Von L. #

    I’ve been feeling the same way! The eye unit is ridiculous and I see my doctor there walking around while I sit, sometimes upwards of an hour, waiting for her. My last visit was particularly upsetting (bedside manner is not her strong suit), and by the time I headed upstairs for my endo visit, I was in the first real burnout I’ve had since high school. I waited 45 minutes to be called for labs, where my arms have long since decided not to cooperate, so it takes twice as long & hurts twice as much as it used to. I burst into tears, something I haven’t done at Joslin ever, except maybe some weepiness at leaving Cindy Pasquerello in pediatrics. I pulled myself mostly together & went back to the waiting room, head still spinning, and proceeded to wait another hour before being called back (same endo as you, Kerri). Once there, as the standard questions began, and the system fought us trying to access my CGM readings, I totally started crying again, and blubbered out an explanation that I was just having a burnout day. The Doc & her med student were at a total loss as to what to say or do. She just sort of hesitantly continued the script. There was no empathy, no “I’m so sorry you feel this way right now. Diabetes is hard.” I had to ask for tissues. This is the family planning area- they MUST have had some tears in there before, but they acted like I was yodeling in Mandarin. I’ve gone to Joslin since 1987, and always been so proud to see “the best,” but I have to wonder if there’s some place that might actually treat me like a human.

    03/29/16; 12:00 am
    • Betta #

      “Yodeling in Mandarin.” Best phrase in your post! I so empathize with you. I have cried in many an endocrinologist’s waiting room and in many more pharmacies.

      03/29/16; 11:07 am
  29. James Thomson #

    Good day Kerri,

    Yes I am a Man, I have been following your blog for sometime. I appreciate your candor about having to manage your Diabetes and life. I am a 41 year T1 and for the last six months I am dealing with Depession. My Doctor has given me two meds one for AM and the PM dose to help me sleep.

    You summed up rather nicely the “relentless monotony of diabetes”. At the end of the year 2015 I had to cope with 22 Doctor visits. My list of professionals looking after me is incredible. I am fortunate that I live in Ontario, Canada and most of my expenses are covered (not all). But I still have to get myself to them.

    Anyway, I appreciate your blog. I wish you, your Family and your new child great happiness.

    Stay healthy,
    Sincerely
    James Thomson

    03/29/16; 10:35 am
  30. Betta #

    I left Joslin years ago and have never looked back. I felt like it was too much of a “diabetes factory” and I didn’t feel like a human- I felt like a number, just as you describe. And this was way before the ACA, so I can’t even imagine how it is now. I too, always waited excessive amounts of time and never felt particularly close to my endocrinologist (with the exception of my pediatric endo, who treated me at diagnosis in 1989.) I have seen 3 different endos since leaving Joslin. One was a part of a big academic medical center in NYC (ahem, Naomi Berrie Diabetes Clinic)- and while I loved that endo, I felt like I was in another diabetes factory. I’ve since decamped to the endo I’ve been with for the past 3 years. She emails me (huh?!), she asks how my vacation was, she is THE most up to date on all diabetes tech and technology, and she will jump right in with me on my rants against the insurance company policies, etc. I just think we are constantly doing WORK with this disease, invisible, annoying and sometimes very difficult WORK. The last thing I want is to feel like my appointment generates more WORK or worse, to be treated without empathy. I want to feel like my endocrinologist is a person that “gets it.” I hope you end up finding a new endo that suits your needs. I think you will. We need Yelp for endos…just saying!

    03/29/16; 11:16 am
  31. Alyssa #

    As a doctor… I apologize, this sucks, and I wish it was better. Not just for you, but because it is not very gratifying to be the doctor on the other end of that exchange. The fun part is celebrating victories with patients… not being another cog on the other side of the wheel. Also, I so so so want you to know that it does not have to be that way! I went to medical school in south florida, and I saw a highly acclaimed physician at DRI for several years. It was your typical check the boxes appointment most of the time with some slightly more chatty talk about my career (that I feel pretty comfortable assuming the rest of the patients likely did not get)… but very little chatty talk about my diabetes. After moving for residency, I very purposefully chose a doctor that came highly recommended by patients but was at a lesser known facility (close to my home, but not so close to the big hospital system where I work). I am pregnant now, too – due just a little before you, and when I told my endo we laughed and I cried and we celebrated together, then we both celebrated more when my A1c came back at my lowest value ever (miracle of miracles!). I felt warm and fuzzy when I left. There were no boxes checked during the visit other than “check an A1c”, but I got a lot of hugs from her and from the office staff, and that was the most important medicine that day. I also can fax blood sugars and call for help anytime I need it. In short: big name = not so important. Big heart and smart doctor = better combo. Do what is right for you to get through your pregnancy… but if I were you I would peace out as soon as possible, because you deserve so much more in your care!!

    04/18/16; 7:51 pm
  32. mark samonte #

    I’ve been looking for a healthy caffeine drink that I can help me get active all day without crashing and your article really give me the information. Thanks a lot!

    09/17/17; 12:34 pm

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  1. Guest Post: Taking Steps Towards Better. - Six Until Me - diabetes blog
  2. Diabetes Blog Week: The Healthcare Experience. | Six Until Me - diabetes blog
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