The Hard Diabetes Changes

I've been using an insulin pump for almost seven years and it's unlikely that I will go back to injection pens. However, I know that things change over time and how I feel about things also change, so I will never say that I will never go back to injection pens because the future is unpredictable. This week, I have been thinking a lot about all the times I've changed the way I manage my diabetes and how difficult some of those changes were. 

I remember when I was transitioning from pens to my pump and that period where I was “practicing” with it. I swear I just wanted to throw it against a wall it was so annoying. But I was also doing twice the work; I was injecting the real insulin with my pens and calculating pretend insulin doses with saline in the pump. It took twice the time for no extra gain. I did that for three days.

I sat in my kitchen one of those three days and thought to myself what if, after all I went through to get this pump, I actually hate it? What if it drives me batty? Why am I changing everything? And the horrifying thought of what if it doesn't help me?

Then I reminded myself that very few people around the world give their pumps back - they continue to use them and are happy with it. I had seen this research on the internet. I also reminded myself that if I didn't like it that I could go back to pens. I reminded myself that change is always hard.

I remember when, after living with type 1 diabetes for 6 years, I changed from two injections per day to four! I remember thinking "how is this better?" when it was suggested. I didn't want to do it but my research told me it was a better way and it was worth trying.But it was better.

I remember when my first blood glucose meter became obsolete. I think I used it for 5 years!!! I know, it was crazy! It was a pain to try a new one. Not to mention changing to new test strips. But it was a good change.

I remember when I went from checking my blood glucose twice per day to four and then to seven. That was a pain but, again, worth it. I learned so much about managing my insulin doses to match the needs of my body from all of those tests. Now, it's simply out of habit that I still maintain those 7 tests.

I remember when I tackled proper carb counting and not just guessing - that was a lot of extra work for a couple of weeks. Again worth it.

I was not happy with the results I was getting in my life with diabetes and even though change is always going to be difficult at first, it’s worth remembering that some changes are worth it. Some were not worth the effort and I didn’t continue with them. But doing nothing was not an option. If I didn't try I would never know if it was better.

Scary Diabetes Heart Stuff

Last week, our local type 1 diabetes support group organised a talk on heart disease and it’s association with type 1 diabetes (with a great speaker and a good crowd - thanks to all who attended). I feel that out of all the complications of diabetes it’s not talked about as much as the diabetic retinopathy, foot disease or kidney disease complications.

Yet, I also feel that it’s the sneakiest of all the complications. There are warning signs for diabetic retinopathy, foot disease or kidney disease and, in today’s world, it is possible to maybe halt the progression of these complications.

But unless you are paying close attention to all the risk factors; high blood pressure, high cholesterol, family history and the lifestyle factors, it can seem like it comes from nowhere. Not to mention that better glycemic management is linked to weight gain, which increases our risk again! Yeah, right - how can we win?

I also was under the impression that because I eat healthily and exercise I had that box firmly ticked and didn’t have to worry about heart disease. That heart disease related more to people with type 2 diabetes. A cholesterol level of 5.7 told me otherwise.

And then I found this; “Heart attacks and other cardiovascular complications cause the death of nearly 3 out of every 4 people with type 1 diabetes, compared with just 1 in 4 people in the general population.” according to a Swedish study published online September 18 2015 in medical publication; Lancet Diabetes & Endocrinology.

Dang it - I should always question what I think I know!

Our speaker was very concerned about giving us negative and scary information. But I was like "bring it"! I was not scared or running from the room hysterically. And I was surprised at my reaction.

All this information might seem like it’s scaremongering. But I was not scared or running from the room hysterically. P.S. I do firmly believe that fear is not a good motivator for anybody!!!

When I was younger, I really didn’t want to hear about the worst case scenarios. Those nasty complications that would happen to me if I didn’t do as I was told. I didn’t want to know about what could happen down the road.

Well, I seem to be at that point “down the road” where information, even scary information, gives me power over it. At our presentation, I was calmly thinking to myself “it’s good that I know this” and “it’s not going to catch me out because I know this scary diabetes heart stuff now”.

It feels strange now that information about what were once “scary diabetes complications” is now information that gives me power over my diabetes. This information empowers me to stay healthy… but I was also ready to hear it.

This Is How I Do Diabetes Clinic

This post was inspired by the Diabetes Dominator - Danielle Hargenrader and her video series This is how I do Diabetes. Thank you so much, Danielle. My recent visit to my diabetes clinic took five hours door to door. This is probably not unusual for many people attending outpatient clinics in public hospitals in Ireland. However, for someone who has good management of their diabetes and is a very low maintenence patient; it seems a bit ...  uumm, Not Sensible.

Here's how my visit went;

I left my house at 1pm and an hour later I pulled into the queue, yes queue, for the car park at the hospital. I queued for fifteen minutes before I squeezed my Mazda into a parking spot. I had 15 minutes before my scheduled appointment and after sitting for an hour with more sitting in my future I walked over to the main hospital building used the bathroom and got a coffee. Input to replace output ;-)

I headed back over to the diabetes clinic building and I was called by the healthcare assistant for blood pressure and weight in within minutes. Then back to waiting room where I noticed a sign “Be quiet, clinic in progress”. Eemm ok! What parties have I been missing?

I’m really glad the my clinic has free WiFi - definitely helps pass the time. Most of the time I like to be disconnected from the internet when I leave the house but not for huge chunks of time in a waiting room.

A loooong time later, I took an open slot with the dietitian. What else was I doing? I was going to ask to see one anyway to get advice on areas that could help reduce my cholesterol. So this was a long educatio session, maybe 20 minutes.

AND, back to the waiting room. At this point, I was making small talk with some of the other patients there. It was an insulin pump clinic so we all had that in common. We chatted about different blood glucose meters, some of the apps that come with them, the Freestyle Libre and other CGM’s.

Another long wait later, I was called by the non consultant doctor for review. This really didn’t go anywhere. or add any value to my visit. It took me a couple of tries to log into my online records. And while I took over her keyboard, she took a call. Once I had pulled up my reports, she pointed out how my blood glucose range was very wide. Somethink I alread knew and we actually quite recent. She then asked me a couple of generic questions, you know, how many hypos do you have on average, per week, and such.

About 10 minutes later my non consultant doctor asked for the Consultant to review my case. I’m not really sure why. And then we waited for that to happen.

Once my consultant came into the room the appointment progressed much quicker and was more beneficial to me. I got to discuss all the things I needed to, got all the answers I needed and a prescription for last weeks statin too.

I used bathroom once more, checked my blood glucose and drove out of the car park at 5pm, arriving home to my door at 6:05pm

In total that's two hours in the clinic, one hour drive each way and time for parking, coffee and loo break. Time actually spent with a healthcare professionals was approx. 45 minutes.

That’s really my whole day gone. And I had organise to have my children collected from school as it was an afternoon appointment.

5 hours to be healthy!

Statin a New Phase of Diabetes

23 years, 10 months and 9 days! That's how long I've been an “insulin only” chick with type 1 diabetes. Last week, I started taking an additional medication in the form of a statin. Alas, now at age 44 and a cholesterol of 5.7 (the recommendation is 4.5 for people with type 1 diabetes) and a LDL of 3, I'm statin a new phase of diabetes.

I have lived with type 1 diabetes for almost 24 years. I've gone from hypodermic needles, to refillable pens, to disposable pens, to an insulin pumps and CGM. I've used a good few different types of insulins that I can’t remember the name of.

However, I was very proud of the fact that the only medication I took all this time was insulin. The mischievous side of me always got a kick out of some healthcare professionals surprise to this. Why, Yes, insulin is the only medication I take!

Now it seems those days are gone. And while I'm not ok with getting old (see here), still. I am, oddly, ok with this new phase…. now!

When my consultant first suggested a statin I was very reluctant. At that point, we didn’t have any lab results for my cholesterol but considering my age of over 40, she said it would be a sensible preventative measure. I said I would consider it.... maybe?

As the months went by, I did some research on type 1 diabetes and heart disease. I found out that heart disease in people with type 1 diabetes doesn’t present always with symptoms like it does in people who do not have diabetes. This is good to know!

Heart attacks and other cardiovascular complications cause the death of nearly 3 out of every 4 people with type 1 diabetes, compared with just 1 in 4 people in the general population, according to a Swedish study published online September 18 2015 in medical publication; Lancet Diabetes & Endocrinology. OK now I"m paying attention! I'm not trying to scare people. It's just that, for me, this information is being forewarned.

And it just so happened that we had a person who had recently had a heart attackat at one of our diabetes support group meetings. Then, George at Ninjabetic US wrote about his recent heart scare. Thank you George.

Yep! Frightened the bejaysus out of me. Lots of “signs” from the universe and I wasn’t going to ignore these ones. Sometimes a little fright is what I need - but mostly fear is not a good motivator!!!! (Note: for all those who try to use it as one).

I also thought about how it’s possible that only one heart attack can take me from this world. While losing my eyesight or a limb is more likely to leave me in it. And yes, the possibility of losing my sight would bring a sadness to me that would make living difficult to cope with, BUT I would still be alive.

So, I’m totally onboard with preventing my heart attack or a stroke. I started taking Rosuva (Rosuvastatin), the generic equivalent of Crestor, last week and I’m also finding one or two remaining areas in my diet where I can trim some fat off.

So take that cholesterol!

P.S. If there is anyone who would like more information and you live in the Co. Clare area. We are having an information evening on Type 1 Diabetes & A Healthy Heart with Dr. Ray O’Connor, GP When: Tuesday 21st February at 8pm Where: The Temple Gate Hotel Ennis, Co. Clare.

New Year New Me... meh!

Now that January is over I can stop saying “It's the new year!” I know, I know! I’m probably a couple of weeks behind everyone else. New year's resolutions are a distant memory as is a reason, as good as any, for some people to have a new beginning. And, apparently, that only ever means a diet, maybe a gym membership that never gets used and a bombardment of media ads to be healthy, get fit and go on a diet. I felt this year it was more annoying than usual. I actually have a friend who refuses to buy a women's magazine for the months of December and January for this reason!

I still try to embrace the whole new year resolutions malarkey but in the essence of trying to be nicer or work on my patience.

However, just as the year was wrapping up I stumbled across a couple of things that has made me leap, all in, with a genius idea for next year's new year resolutions. (And Yes I know that self praise = no praise, i.e. I'm not a genius :-)

Here’s what happened; In December, I read this piece from DiaTribe on New Apps in Diabetes. It was really interesting (Thank you DiaTribe). However, it was this video, by Dr. David Sobel on “how people are not unmotivated; they are overwhelmed.” that fired up my brain.

In the video, Dr. Sobel talks about how health care professionals tend to overwhelm their patients with lots, and lots of information and a long list of things they need to do to become healthier. And what often happens is that people end up being so overwhelmed with all of it and leave the office feeling so much worse than when they went in. But worse than that, they become paralyzed to do anything.

And I thought about this, especially, while at our local Type 2 Diabetes meet up in January, as I was looking through Diabetes Ireland’s Healthy Eating guide for people with type 2 diabetes with page after page of advice and no clue where to start.

I put it to our type 2 diabetes support group that if they were given a list of small defined tasks such as;

- Cut back on sugar in your beverages by even 25% - If you take an artificial sweetener reduce it by one if you take more than one - Switch from full fat milk to low fat - Switch from low fat to skim - 10 minutes of moving 3 times a week - Switch your daily Latte/Cappuccino to tea or straight coffee, etc.

And what if they only had to pick one thing from that list and stick to it for 10 weeks, would they be more likely to make it a change for life? Or how about the first thing they do is make a list of all the things they would like to change or things they would like to bring into their lives.

Some said “yes” and some were skeptical. So I suppose it’s back to “New Year, New me Meh! But for me, talking all this through with the group gave me focus on what I'm going to do about my elevated cholesterol. Watch this space;-)

I also like the idea that Dr. Sobel came up with to have our invitation to our annual diabetic eye screening come from our eyes to address the 50% of people who do not attend their eye screening appointment. Mine would go something like this;

Am I Ready for my Diabetes Appointment? Yikes!

My next diabetes clinic appointment is next week. It’s been eight months since I was last there. I’m not sure how I feel about having such a long time between appointments but maybe that’s another post? Diabetes, especially type 1 diabetes, is one of the few conditions where you actually have to prepare for your clinical review appointment. It’s how you will get the most out of your visit.

For a lot of years, I just showed up with my “diary” and walked out of there disappointed. If truth be told, I was very resentful that I had to be there and a little down in the dumps about the whole diabetes thing. During these years my primary goal was to get out of there as fast as possible and get on with my life.

I became more motivated at my diabetes clinic appointments when I was considering starting a family. And that motivation and effort has paid off.

I don’t dread my clinic appointment, like many do, because I feel this is my chance to get help if I need it, or to review where I need a little extra support from my team. But I do dread the getting ready for my appointment! It is a lot of work.

Everyone has a different way they prepare for their clinic appointment. Here's how I prepare for it;

SAVING UP QUESTIONS TO ASK In between appointments, if a, non-urgent, question pops into my head I try to write it down somewhere - preferably somewhere near my Long Term Illness book which I’m already in the habit of bringing with me. This coming visit I need to get an updated letter for travelling and I’ve already noted it.

THE LABS About two/three weeks before my appointment, I have my blood drawn in my GP’s office to be sent to the lab. The results are usually sent to my clinic automatically but sometimes that hasn’t happened on time or at all, so before my appointment I collect a copy of my results and keep a copy for my own records.

BLOOD GLUCOSE RECORD This first and last thing I do to get ready for this meeting is to upload all of my blood glucose meters (I use two) to the software programme I use for my insulin pump. I also upload all the information from my insulin pump.

LONG TERM ILLNESS BOOK I bring my Long Term Illness book with my to my appointment so that I make sure it has been updated every six months. I also print out a list of all the “stuff” I use. My LTI book is 10 years old and there is a lot of stuff on it that I no longer use. This also saves a bit of time and scores me some brownie points with my endo. Always useful.

PRE-EMPT QUESTIONS I MIGHT BE ASKED I try to preempt questions I might be asked about specific high or low blood glucose readings as best I can. I try to remember that the important readings are the ones that I can’t account for. Sometimes, I have to remind my healthcare professionals of that too.The highs and lows that are from the usual culprits are ones that I can address myself. Its those very rare highs and lows where I don’t know what the cause was that are a problem. If I don’t know what caused them then how can I prevent them from reoccurring.

So, am I ready for my diabetes clinic appointment? As ready as I’ll ever be! :-D

Here is another article I thought had some very useful tips on getting the most out of your diabetes appointment.