Type 1 Diabetes

Diabetes on steroids

Back in October, I had a steroid injection in my hip. And yes, it drove my glucose levels bananas! For those of you who may not be aware of it, steroids are one of the medications that truly mess up glucose numbers for lots and lots of people.  The ultimate craziness only lasted two to three days but the residual crazy lingered a couple of weeks.

Here’s a little of the backstory behind why I got a steroid injection.

I have been complaining about my right hip for some time and I finally did something about it in September 2016. I went to my GP. He referred me to my physiotherapist and we did some “process of elimination” exercises. They didn't work. So then I went for an MRI and was referred to a rheumatologist.

At least now, we think I know what is wrong with my hip! It would seem both my physiotherapist and my rheumatologist agree that I have bursitis. And my rheumatologist injected steroids to reduce the swelling. If you have diabetes and you have steroids that plays absolute havoc with blood glucose.

However, no one could tell me how many days, weeks, months the glucose madness would go on for and how severe it would be.

Here is my experience of what happened to my glucose levels.

Prior to my injection my diabetes management was going fairly well with just the usual ups and downs. I had the shot mid morning and my glucose levels didn’t feel the effect of the injection until after lunch. But after lunch my numbers remained in the high teens until the early hours of the next morning. On day two, I noticed that if I increase my mealtime insulin significantly more than usual it would keep them in check. However, if I forgot to make the increase then I struggled to bring my numbers back down for hours.

Then the effect of the steroid started to wane slowly over the next two weeks and I had the opposite problem: trying to keep my glucose levels above hypo level. I adjusted insulin doses slowly and only making one or two changes at a time to bring them back to my normal diabetes levels (?!?!).

I was grateful that not only was I aware that this would more than likely happen but that both my endocrinologist, rheumatologist and physiotherapist reminded me it would. I'm probably going to have another dose in January but now, at least, I have a good idea of what to expect.

Weather the diabetes havoc-er

One of the factors not included in Diatribe’s 22 factors that influence glucose levels is the weather. Sometimes the weather plays with my diabetes management. And here’s how. Do you remember that really, really wet day we had last week? It seems like a distant memory now and I don’t think it had a name, like a storm name, but most of the country was flooded under a yellow weather warning.

When I got up that morning and look out the window I thought “Nope, I’m not walking, I don’t mind being wet and drippy but not that wet!” I was disappointed because most days I love my walk. It clears my head as I inhale clean fresh energy and exhale stress. I swing my arms vigorously and loosen up my neck and shoulders. I had missed my walk the day before due to a doctor's appointment so I was doubly disappointed.

So, with my daily constitutional off the menu, I took my “no-walk” breakfast insulin dose, which tends to be twice what I take if I am walking and off I drove the kids to school.

However, as I was dropping the teen and preteen to school the rain wasn’t that bad. So,I changed my mind (GASP)…. but how can I avoid a hypo seeing as I’ve taking all this insulin without using calories to prevent the low glucose reaction that will surely follow?

I decided to turn my background/basal insulin down to zero for one hour on my insulin pump. Yes, it was going to take an hour to take effect but it was better than a severe hypo. At least it might soften the blow.

Now, if I was on injection pens there is no way I could have avoided preventing a low without glucose.

So was I successful? Weeelll, kind of. I did have a hypo. A doosy at 2.8mmols but it didn’t feel as bad as it was and I didn’t feel like I had to consume the entire kitchen just about a dozen small jellies.

Compared to most hypos this one rebounded quite quickly and not too high. However, I did spend most of the day with glucose levels that were more elevated than my usual.

And there you have it, diabetes the spontaneity killer and weather the diabetes havoc-er.

Living with Diabetes is like Parenting

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My life is finally slowing down after a number of weeks of events, diabetes awareness "stuff" and children being off school for mid term break. I have so many blogs posts in my head and no time to write them. But soon... In the meantime, while I was fast asleep, my husband had a moment of inspiration about living life with type 1 diabetes and what common human experience might come close to describing the type 1 diabetes experience? Yes, there are a lot of questions to ask about why I was asleep and he wasn't but not for publishing online ;-)

So here is a guest post from my hubby.

Gráinne was away at a conference recently, presenting the "patient experience" to a group of 100 almost entirely healthcare professionals. She came home the first evening very excited by not only how well her talk was received, but the general tone of the conference in general.

I'm sure she will fill in details about the conference in a separate post, but I wanted to write a quick blurb about something that struck me at 3am (don't ask): how does anybody gain insight into the life of a person with type 1 diabetes in an effort to build empathy?
The intellectual approach of explaining all the things one does to manage type 1 is important but somehow inadequate.  Living with (and sleeping next to) a person with diabetes (PWD) can give you some insights, and loving a PWD to the extent where you have some of the same fears and worries they do at a very emotional level yields a whole new level of insights.
But such experiences are hard-earned and not wholly practical. To start with, I'll take issue with others sleeping next to my wife on anything other than an exceptional basis :)
What struck me is there is a very common human experience that might come close to describing the type 1 diabetes experience: parenthood.  I may not have diabetes, but I live with somebody who does.  And...I am a parent of two pretty amazing kids.
What can parenthood do to help build empathy for those living with type 1?  Let me share a partial list:
1. Say goodbye to a reliable full night of uninterrupted sleep.
Even in her pre-CGM days, Gráinne would wake up in the middle of the night not feeling right. Her sugars could be high or they could be low, or she could just be coming down with something. Regardless she had to check her sugars and then decide how to react to the information.
I wouldn't say it's quite like having a newborn baby, but it's pretty close to having a 6 month old baby who can't reliably settle. But without the option of seeing if the baby will be able to settle herself...and without the possibility that the 6 month old baby will grow out of it.
2. There is no rulebook.
 
A new parent is often desperate for a manual on "how to be a good parent."  What you learn as a parent is that every child is unique and has their own set of needs. You just need to figure out what works best for the child in front of you at the time. And of course what works for a two year old is not what works for a twelve year old: the "rulebook" for parenting is forever changing.
Type 1 seems to work in much the same way. There are so many variables in life that what worked for you last week may not work for you this week. You just take on whatever challenges type 1 throws at you, and deal with them in the best way your sleep-deprived, hypo-affected brain can manage.
3. Frequent guilt.
 
We've all as parents done things that we regretted. Maybe it was giving a punishment that was in retrospect overly harsh. Or maybe we're worried that we're being too lenient, or not helping our child learn lessons the hard way because we're spoon-feeding them the answers.  Or maybe our child is struggling in school, or struggling socially, or trying really hard in a sport that they love but are lacking the skills to be really good at...and we feel somehow responsible for this and guilty that we're failing them as parents.
If you have type 1, guilt about "not managing your diabetes" seems to be there. Always. That bit of extra chocolate you had because it looked nice? Unless you accounted for it perfectly (and see point 2: you probably didn't account for it perfectly because there is no rulebook), you're probably going to see the result of that "indiscretion" in your blood sugars. Not getting the HbA1c result you hoped for?  More guilt and self-loathing.
4. Low-grade worry.
As parents, we often worry about our children's future. Some of these things are those over which we have control (and feel guilty about doing "wrong"). Others are longer-term things over which we have no real control: is the planet going to be habitable by the time my grandchildren are born? And every so often, we think about our own mortality: what would happen to our children if Gráinne and I were to die unexpectedly?
These aren't necessarily things that keep us as parents up at night (those are more the "guilt" topics!), but they are the things that can weigh on the mind of a person with type 1. Mortality is a much more real presence in the life of someone with type 1: the very medication that is needed to keep you alive can also kill you (or worse).
5. Lots of "outside" advice
 
New parents (and experienced parents!) are often awash in advice, both solicited and unsolicited.  It is advice commonly wrapped in "you should" and "never" and "always"...very emotionally charged terms.
 
Have you ever talked to a mother who wants to breastfeed but wasn't able to make it work for whatever reason?  Feeding her baby with a bottle can bring on a whole world of emotions with that simple act of providing nourishment to her child, and that's before the very "helpful" commentary from some well-meaning individual: "breast is best!"
The world of diabetes management is awash in advice, much of it from medical experts and some of it from crackpot experts who read an article about "how cinnamon can cure diabetes" or some other such thing. But much with parenting, what a PWD must do is learn to figure out what advice is helpful to them and use that, whilst figuring out how to deflect and ignore advice that does not.
There are more parallels between "parenting" and "managing type 1 diabetes," but this has hopefully given a taster based on my perspectives as a "diabetes insider-but-outsider."
There's one thing, however, that is DRAMATICALLY DIFFERENT FROM BEING A PARENT.  Parents do not have any sort of scorecard. I mean okay, if you have killed your child violently are severely neglecting them to the point their health is in danger, you've clearly failed as a parent...but beyond that parenting is pretty much a "pass" sort of proposition...our children grow up, leave the home, and succeed (or fail) largely on their own effort, merits and socioeconomic position.
But in the world of diabetes...there are all sorts of numbers. The most notable one has been mentioned here a few times: HbA1c, or the "time-weighted average blood sugar over the past three months." Doctors have historically focused on this number which is about as useful for an individual as the Body Mass Index (which is to say: not terribly useful).
With the advent of CGM and FGM technologies, they're now starting to focus on "time in range" which is arguably a better indicator of overall diabetes management and overall health, but it also somehow fails to account for the fact that there are just so many factors over which a PWD has no control.
That's the thing: most PWD who are armed with the best of knowledge, tools, and medicines will struggle to achieve their target HbA1c or time in range.
Imagine if we were to devise a "parenting index" for each and every parent, as a value between 0 and 100, and we set it up in such a way that it's pretty much impossible to get a 100, or even an 80. Why? Because your children have a mind of their own, you can't control them 100% of the time, there are people other than you influencing their lives, and you're human so will make mistakes.
But you as a parent know that "100" is the best possible score, and so you try really really hard to get 100...you're trying to do everything the experts say you should be doing, you're spending lots of money and time to achieve perfection and love your child like no parent has ever loved their child.  But year in and year out, you struggle to get a score over 60. Your best ever score was a 77.
And now ask yourself: Are you a failure as a parent?

The Death of the Animas Insulin Pump

Last week, Johnson & Johnson Diabetes, who own Animas, announced that it was “exiting” out of the insulin pump business, effective immediately in the US and Canada. And eventually in the rest of the world. Once I read all the way down the press release to realise that it was just USA and Canada for now, I was relieved.

Then I was seriously miffed, but not completely surprised. Since the Vibe insulin pump was introduced, a number of years ago, innovation seemed to have stalled within the company. Johnson & Johnson own both Animas and the glucose meter company LifeScan/OneTouch but they didn’t even innovate between these products, not even to do what all others were doing and that was to sync products via Bluetooth or whatever internet cloud magic they choose. One might even say they really checked out of the diabetes industry a long time ago by their lack of interest.

So, what does this mean for us in Ireland? And what does this mean for me an Animas Pump user?

I have been using an Animas pump since my pumping beginnings in 2010. Then in 2014, I upgraded to the Vibe and in 2015 I added the Dexcom Continuous Glucose Monitoring System (CGM) to it. I didn't choose which insulin pump I would have, it was chosen for me, but I didn't have any complaints. In fact, it's been a great relationship!

Now I'm trying to think ahead and I realised that in the not too distant future I'm going to have to find a replacement for my insulin pump.

What are my choices in pumps? Do I actually have a choice, when the only other insulin pump my health service has a contract with is Medtronic? Yes it's probably a good pump but I don't want to be forced into it.

BUT it's not just my pump I need to consider!

This also effects my CGM device. How will my new pump interact with my current CGM, if at all? My Dexcom receiver IS my insulin pump, meaning that my glucose sensor transmits the information straight to my pump. So I need to either get a new receiver device or change CGM’s.

And then, there's my glucose meter which I was also able to upload to my insulin pump software programme which allows me to create useful graphs that help me make better decisions about my daily care. All of my information, from all of my devices is uploaded to the same place where I can see it all and it was easy!

Will I need to change both of these devices to make life easier? What will the overall software platform be that I use?

I want to be able to upload/Bluetooth/cloud sync all my devices to the same place!

I want to use whatever d*** device I like best. And I really don't like that I have to research all of this when managing diabetes is enough work already.

The Flu Vaccine what to do?

Every year, around this time, I have a conversation with myself about whether or not I should get the flu vaccine. And every year I make a different decision. Two signs of insanity right there; talking to myself and complete indecision. Whose worried? Not me! Oops, there I go again, talking to myself.  😆

Should everyone with diabetes get the flu vaccines? Well that is completely totally up to you.

So far, I've only gotten it once and that was the winter I was pregnant with my now 13 year old daughter. Since then, I maintained that if it's not broke don't fix it and I never get flu so I didn't bother.

Except last year, I had clocked up one or two flus that knocked me out for a week at a time, I decided that I was going to get it. However, when I went to my GP, I already had a cold and decided to wait but then never got around to it. I'm not sick very often so I figure the odds are still on my side. I do know as I approach 65 I will decide that I'm better off vaccinated.

This year I'm still undecided but maybe swaying towards the “I will” side.

If you are like me and still thinking will I, won't I, here's some additional information for about it

IS THE FLU VACCINE FREE FOR PEOPLE WITH DIABETES?

“Yes” and “No” because nothing is ever straight forward in our health system.

Yes, the flu vaccine itself is free to everyone in the “At Risk” groups which includes people with diabetes.

No, because if you do not have a medical card, a GP services card or a HAA card, you will have to pay for someone to jab it in.

A lot of pharmacy chains offer the flu vaccine so you do have the option to walk into one of those and have it done there and then without making an appointment. Next time you are collecting your diabetes supplies you can ask.

 

Pneumococcal Vaccine

It's also worth mentioning that the HSE have also launched a Pneumococcal Vaccine campaign which shouldn't be confused with the Flu vaccine. I would like to thank our guest speaker, Paul, from our last diabetes support group meeting for clarifying this information for us. WHAT IS THE Pneumococcal Vaccine?

“Pneumococcal disease is an umbrella term for a range of illnesses caused by a type of bacteria called Streptococcus pneumoniae (also known as the pneumo bug). It is a major cause of serious infection that can lead to death, particularly amongst the elderly, the very young, those who have an absent or non-functioning spleen, those with long term medical conditions*, or those with weakened immunity.” SOURCE

However, the pneumococcal vaccination is USUALLY A SINGLE VACCINATION (ie once in your lifetime dose) for those at-risk. The most at risk group are children under age 2 years and adults over 65. Once you get it once you should be protected for the rest of your life. There are exceptions to this guideline so if you would like to know more ask your GP or visit http://pneumo.ie/

Thriveabetes; What is it? Why do I need it?

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My children have been back to school for almost two full weeks now and since their first day back I've been spending a couple of hours most days planning Thriveabetes 2018. A month ago, at our fundraiser, I was asked to explain what Thriveabetes is, why people with diabetes need it and why I was asking people to give money to it.

After my nerve wrecking speech, several people commented on how they had no idea that living with diabetes was so involved and required so much work. Why I keep forgetting this when I talk about my diabetes I'll never know!

This post is to explain to people who don't have diabetes, what living with type 1 diabetes is actually like, to explain what our conference does for people with diabetes, why I'm passionate about it and why I need it.

Here's what I said;

What is Thriveabetes? And why do people with diabetes need it?

To answer these questions I have to, first, take you on a little journey. My journey.

I was diagnosed with type 1 diabetes 24 years ago as a young adult and It changed my entire life. I'd like to be able to say that living with type 1 becomes easier but it doesn't - it becomes habit.

I woke up this morning, a little groggy because my glucose alarm went off during the night telling that my levels were a little high. So I got up, checked them on my meter, worked out a correction dose of insulin, took it and went back to sleep.

Before breakfast, I checked my levels again; they were in target, so I took my insulin for my regular weekend breakfast of tea and toast also known as 40g of carbs and then ate it.

Two hours later with kids and car packed to travel across Ireland, I checked my levels again to see how close I came to getting it right. The answer was; not in target range, but close enough.

As I visited with my mother and family, I wondered what lunch was going to involve and when it was likely happen. It ended up being a sandwich at a Spar. I checked my glucose levels again. They were a little above my target, so I had to work out a correction dose of insulin plus working out an educated guess of how many grams of carbs were in this particular sandwich. Then I eat. My day, as with all other days, continued like this.

I do all of this out of habit. The numbers are very seldom perfect. But I get on with "close enough".

Now imagine, that the person with diabetes isn't you, but your child. So on top of all of those daily diabetes tasks that I do, you now have the added worry of “if I don't do this “close enough” my child is going to get sick. Again!”.

This kind of anxiety and stress goes on 24 hours a day, 7 days a week, etc. Diabetes NEVER takes time off. Ever.

This is why Thriveabetes is needed!

Thriveabetes is a place where you can relieve some of that stress and anxiety. The power and comfort of being in a room with so many people with diabetes, learning so much about managing daily life with it and knowing that every single person in that room knows diabetes like I do, lightens that load. There is no other place where we can get that.

It's a day that is organised completely by us; people with type 1 diabetes. We are all volunteers who are dedicated to and passionate about bring people with type 1 diabetes together to share what we deal with every day and to learn from world class speakers.

And that is Thriveabetes. And that is why I need it!