Diabetes Blog Week Day 4: The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

So today's topic is on healthcare experiences. I wasn't really sure if I had anything to write about this, because I don't really know the answer to these questions, but to be honest, I think that *is* my frustration.

I'll be honest, I don't really feel that I get anything out of my normal clinic visits.  I get my HbA1c done, and sometimes other tests as well if it's an annual review. I get my feet tickled and my eyes checked, and things like that, and I know that these are important, which is why I go.

But I don't feel that I really get anything else.  I do my own reviews, and my own tweaks and experiments and changes, and I don't really feel I need any help with that - and I'm not expecting a HCP who's only looking at recent data to be able to give me any long term solutions as diabetes is, at it's heart, an ever-changing beast.  And the thing is, I don't *want* help with that - at the end of the day, it's my diabetes and I'm the one living with it. The one consultant I did see who was much more hands on drove me up the wall as he was very critical and would make huge changes based on a couple of days results, which very much tells me that I don't want that kind of relationship.

And 'm not saying I don't get *any* help - I've been through DAFNE training, I've moved onto a pump, and I'm using CGM (though self funding, because bringing up the possibility of funding got me a big fat no...) so they're there for the big things, and the medium things, like the checks.  But it's the little things that I feel I'm missing, and I don't even really know how.  I read about other people who have a great relationship with their diabetes team, and how they have these amazing appointments where they go in with a list of things and it's all very productive, and I'm just sitting there like "How?!" I don't feel like I can do that, because I generally don't have a list, and I feel like I just turn up, get test results, and have a quick chat and then go. 

I guess maybe I just feel that I'd like a better ongoing relationship, and I think a large part of that is that, at my clinic, it's a bit of a crapshoot who you see, so I usually see a different person every time and I get that it's not possible to make sure that you see the same person every time, but at the liver clinic I go to, which is ridiculously busy, I see one of two doctors, and so over the past five years there's a working relationship and trust that has built up.  I guess maybe it's just that I'm looking for, and maybe productive stuff would build out of that, but at the moment I'm not getting it.  I'm looking forward to reading other responses to this topic to see how other people feel about it!

Diabetes Blog Week Day 3: What Brings Me Down

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)


Diabetes sucks.  We all know that, and I think most of us just sort of deal with it and keep going, because, well, there's not really much we can do about it.  We come up with ways to make it suck less, and that's for tomorrow's post, but there's also things that make it suck more, and I'm going to write about one of those today.

One of the things that brings me down is unhelpful doctors/nurses and other health care professionals.  I'm not talking about regular HCPs, the people who don't really have anything to do with diabetes.  While it is frustrating as hell when they ask stupid questions and downright terrifying at times if these people are responsible for your care, those aren't the ones I'm thinking about are the ones who are actually meant to be helping us - our DSNs and endocrinologists.

I've swapped endos recently, due to various factors and the way my clinic works.  The first time I met with my new one he seemed lovely - very enthusiastic and keen to help.  The two appointments I've had since? Not so much - in fact I cried after both of them, and I haven't done that in a while. 

I'm not really sure I can pinpoint exactly what was so horrible about the appointments, but in both of them I felt so utterly incompetent as a diabetic.  The first was rushed - he was running about two hours late, and was clearly trying to catch up, and I had a very hurried appointment which pretty much consisted of him telling me off, both for not contacting the DSNs for help (which I didn't feel I needed) and for not making changes as quickly as he thought I should.  The second was a longer version of the first, even though I pointed out that I had tried to contact the DSNs on several occasions and received no response, and a thorough going over of the previous two days of CGM data and wanting to make several changes based on that - oh and a criticism for being 7.3 (131)  an hour after a meal...

Oh, and my HbA1c? Is 6%

I walked out of those appointments, and like I said, I cried.  I just sat there and thought "what's the point?"  If I get criticised and told that I'm not doing well enough even though I work my arse off to get those results, then why bother?  I might as well just give up and not worry and get told off just the same.  If I get treated the same way with an Hb1c of 6 and one of 10%, then why the hell should I care? (Don't worry, I'm not giving up, I'm just explaining how I felt).  I sat there and I felt all those familiar thoughts come back that I had when I was a teenager and I just...gave up.  If it wasn't for the fact that I'm a bit older and wiser now, and a bit more stubborn in terms of not letting that bastard get me down, I could see appointments like those sending me on a fast track to burn out. 

Because if the people who are supposed to be helping and supporting you through the sucky condition just grind you down, then what chance do we have?  It wasn't even so much what he said, I didn't mind him suggesting changes, it was the way he did it.  The whole attitude that I was clearly doing things wrong, and every number out of range was explicitly my fault.  Who does that kind attitude help? 

Luckily, I have other support systems in place (which is tomorrow's post), but I worry about the people who don't, the ones who go into that office and come out feeling like I did and actually do give up.  Because it's hard to live with this disease and deal with all the crap that comes with it without fighting against the people who are meant to help as well.  It's just one of several things that brings me down about diabetes, but the thing that gets me the most is that it shouldn't be - your diabetes team should be one of the things that tries to make diabetes suck less, not more.

Diabetes Blog Week 2013: Share and Don't Share

*blows dust off blog* I know I haven't updated this poor neglected blog in a while, but this week is 4th annual Dblog week, and I had such fun doing it last year I thought it would be a good way to get back into the swing of things. :)


Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

 I generally have a pretty good medical team - the DSN's are fantastic, and when I actually get to see my endo he's awesome.  However, I've had some issues with other doctors, and there's a couple of things I'd like them to see. Firstly, that diabetes is not just about numbers - there's a person, who's trying to live a normal life, and deal with all sorts of other issues, and juggle a chronic condition on top of it. Secondly, that diabetes doesn't always play by the rules. I might not fit into your little tick boxes and textbook definitions - that doesn't mean I'm doing things wrong or that I'm a "bad" diabetic.

When you look at my logs and you pounce on out of range numbers and demand an explanation, it makes me feel like I've failed, that somehow by not keeping all of my numbers in range, I must be doing something wrong. It's like being a child hauled in front of the head teacher. Instead, I would like some support, and encouragement.  An acknowledgement of the work and effort I put in to get these results.  Diabetes management isn't perfect. Life isn't perfect.  I would like you to see that, to ask how things are in general, if anything in my life has changed, if I'm having any issues with my diabetes management that I'd like to discuss.  There are so many things that affect my numbers, and insulin and food are only two of those.  When you focus on my logs and those numbers and don't see anything else, you miss all those other factors, and you can't help me.  You can't help me figure out that the reason I sometimes have highs on a Friday evening is because I get stressed out sometimes at lab meeting. You can 't help me decipher those patterns if you're not willing to look beyond the numbers to the person behind them.

In terms of things I don't want them to see? Well... there are many! The times when I wake up in the middle of the night and I'm low, and I don't even bother testing, I just grab some fruit pastilles from the jar beside my bed and go back to sleep (I don't do this all the time)... the times where I get so overwhelmed with carb counting something new or complex that I just take an instinctive stab in the dark...the weird things I do like add 35% extra insulin when I have a large amount of carbs (hey, it works for me).  So many things! Though I guess, if there was some forgiveness of out of range numbers and acknowledgement of life influences, I may feel less guilty about some of those things.

Same song, different chorus

So I had my annual review at the diabetes clinic earlier this afternoon, and I'm sitting here feeling frustrated and angry.

I will start off by saying that in general, I really like this clinic: the DSNs are awesome, through this clinic I've been on a DAFNE course and moved from Mixtard (when I first arrived) all the way to an insulin pump, and my diabetes management has really improved.  However, I have one major grip with the clinic, and it's this: I never see the same doctor twice.

Usually, I find this mildly annoying, but no big deal. Then I had the appointment with Dr Pillock and it really threw me. I was so angry after that appointment, and I sat in that waiting room afterwards waiting to see the DSN feeling like a complete and utter failure.  I know that isn't true, and I generally don't feel like that, but now every time I go to that clinic, I sit in the waiting room not knowing which doctor I'm going to see, and I remember that appointment and how I felt, and I stress.  The last two appointments I saw a DSN (which was actually quite good) and a doctor who seemed very nice.  Today, one of the doctors I've seen before (and got on really well with) was in clinic, so I was hoping I'd get him, and instead I got a patronising *insert naughty word here*

He started off by asking me the same questions they always ask (while reading over my notes) we had the usual surprise that I'm not in regular touch with the DSNs *sigh*, and I asked about my HbA1c.  Turns out it's actually gone done a little bit, and is now 6.7%, which I was very pleasantly surprised by, as I was convinced it would have gone up.  The last three months covers our honeymoon and all the surrounding chaos and I felt that I was completely slacking in my diabetes management.  In the last month or so I've got back on track and really made an effort, and maybe that's what made the difference.  Regardless, I was pleased, but I think part of the reason that I'm so frustrated by today is that the rest of the appointment took away from that.

Anyway, I mentioned that I thought that some of the reduction in my HbA1c has probably been helped by the fact that my liver doctor is currently in the process of reducing my steroid dose, which he then looked up to see what had been written in my notes, and then proceeded to get confused as to whether I had stopped or not, and why I was on the dose I was on.  We then got into a slightly heated debate where he seemed to decide that I didn't understand any of it, stated that "we know what we're doing with prednisolone because we're endocrinologists," explained some of the tests I'd had in baby language, and started to suggest things they could do with my steroids.

At this point I was pretty much ready to bash him over the head with my Biochemistry PhD certificate and tell him that there was no way in hell I was letting him do anything to my steroid dose because I wasn't under his bloody care for that and he'd met me once.  *takes a deep breath and counts to ten* Instead, I explained, as calmly as I could (which, to be honest, probably wasn't all that calmly...) that I had discussed all the options with my liver doctor, and that we had decided on a course of action that we were both happy with. He scribbled something in his notes, and stopped pushing the matter.

I'm sorry, but I trust my liver doctor.  I've seen him every couple of months for the last two years, and I really like him.  He treats me like an individual, and he always discusses my options and asks my opinion.  He knows my case far better than some endocrinologist who has just looked at my notes for the first time and decided that he knows better.

Then he went through my last appointment notes, and asked if my basal rates were the same.  When I told him that they were considerably lower (about 40%, because of the reduction in steroids), he said that he didn't want to write all that down, and moved on...

I just...I feel that the appointments are worse than useless. At best, I get my HbA1c results, and check everything else is ok, and nothing else; at worst, I walk out feeling like this.  I don't get anything out of the appointments, and to be honest, I'm not even sure what I *want* to get out of them, but I know that when I have doctors like the one I have today, I don't want to ask questions, I just want to get out of there as soon as I can.  And that's not right.

I'm pondering emailing one of the DSNs at the clinic (since apparently I should be doing that anyway...*coughs*) and asking what the actual policy is in the clinic, and if there's any way I can make sure that I see the same doctor/group of doctors. I don't want to make an actual complaint, but I'm tired of walking out of the clinic feeling frustrated, and it's pushing me to do something about it. 

Any thoughts?

Diabetes blog week 2011: Letter writing day

Letter writing day - Tuesday 5/10: In February the Wego Blog Carnival asked participants to write letters to their condition. You can write a letter to diabetes if you’d like, but we can also take it one step further. How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them. How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams? Maybe you’d like to write a letter to your child with diabetes. Or a letter from your adult self to the d-child you were. Whomever you choose as a recipient, today is the day to tell them what you are feeling.

This is a letter that I keep thinking I should write but I never actually have. Maybe now I've written it I might actually send it one day.

Dear Dr C.

You probably won't remember me, because I'm sure I'm just one of thousands of patients you've seen in your career, but you made a huge difference to my life, and I wanted to thank you.

I began seeing you when I was about 14, when I was still attending the diabetes clinic in the childrens' hospital. There were a couple of different reasons you became my endo at that point. I was due to transfer to the adult hospital when I turned 15, and this was part of the preparation for moving to the big scary world of the adult clinic. The other reason was that my control wasn't very good at that time. In fact, it was pretty damn awful, I have to be honest. I was on two injections of mixtard at the time, blood testing meters weren't quite at the same level as they are now, and I was going through a fairly extended period of burnout. I was always high in the mornings, no matter what I did, I always seemed to be high whenever I tested, I had no idea about how to adjust insulin (in fact, it wasn't even a subject that was ever broached, so I didn't know it was an option!), and it just seemed like it didn't seem to matter what I did, I'd always be high and I'd get yelled at when I went to the clinic. It wasn't rebellion, because it wasn't like I was deliberately not doing my insulin or eating things I knew were 'bad' for me. I just couldn't see any way for me to make things better, and that crushed what little motivation I had. It just didn't seem worth the effort if the effort gave nothing in return.

You were the first endo I've ever had who recognised what was going on. You set up regular meetings with me, you and a DSN where I went along for an hour once a fortnight and you taught me about managing my diabetes. I knew a lot of the science behind it, but you were able to fill in the gaps, like how I was probably high in the mornings due to hormones. You didn't judge me for things that had gone wrong, or high numbers. You were the first person to tell me that diabetes was *my* disease, that I was the one who'd have to live with it, and that I should be the once managing it. No-one had ever said that to me before, and it was kind of a revelation.

It wasn't all sunshine and lollipops. Burnout doesn't just disappear overnight, and although you encouraged me to keep going with the regular meetings at the adult clinic, when I got there they weren't interested. My appointments were once a year for maybe five minutes, I never saw the same endo twice, there was no continuity of care, and it seemed like the only thing they were particularly interested in was making sure I didn't get pregnant! I fell through the cracks, and I reverted back to the way I was before.

But you planted a seed, which meant that when I moved to Cambridge and attended the diabetes clinic here I *believed* my new endo when he told me I could do better. When they encouraged me to get back on my feet and start managing my diabetes properly, they built on that message that it was *my* diabetes, and that I was the best person to manage it. They helped me learn the tools to do that, put me on courses, got me a pump, and I began to see my results improve.

I don't think that would be possible without the help you gave me. You changed my attitude towards my diabetes, and that has changed my life, and for that you have my immense gratitude.