Moments of Inspiration

Meeting Steve Beriault.

I had the pleasure of meeting a man by the name of Steve Beriault on Sunday the 11th of July in the Limerick Strand Hotel, where he came to share his personal experiences in living with Type 1 Diabetes.

Steve is a 59 year old Canadian, he was diagnosed with Type 1 Diabetes when he was 2 years old; he has lived with it for 57 years.

He was diagnosed in the “boiling the glass syringe to sterilise it” era. He was in his early 30’s when he received his first Blood Glucose Meter. Before this he had no way of knowing what his blood glucose numbers were at any time and there were no HbA1c’s tests either.

His achievements include; cycling across Canada in 1975, kayaking halfway across Canada, completing five 5K walkathons and raising $100,000 for the Juvenile Diabetes Research Foundation (JDRF) as a double amputee.

Diabetes threw everything it had at him; diabetic retinopathy, kidney disease resulting in a kidney transplant, and neuropathy leading to both legs being amputated below the knee but he still comes out fighting. Of all of these tortures he says that “you want to make the best of what you’ve got in life and live it”.

He maintains that if you have diabetes you need to become a warrior and that diabetes is your enemy. He goes on to say that the worldwide diabetes population comprises almost 240 million persons. About 24 million (10%) are Type 1 diabetics. Imagine if one could mobilise those 24 million as an army in this war with diabetes. This army has huge potential to raise the funds needed to research a cure and to create awareness & education programmes.

I’ve never thought of diabetes as my enemy; I’d rather think of it as a more of a friend, so to speak, because having enemies can be exhausting and eventually you get tired of fighting. However, I like the analogy and after listening to Steve I am ready to take up arms and fight. Maybe if the researchers heard from us, the people they are trying to cure, more often they might become more inspired too.

http://www.talesintheinsulinvial.com/

Sometimes you just feel tired…

Diabetes is a peculiar disease sometimes, in that, when everything is going well with your blood sugars you actually feel GREAT! You might actually stop and wonder how you could have a disease when you feel so healthy!

However, when the old blood sugars are not doing what they are supposed to and that sluggish tired feeling creeps in, it can be hard to get back on track. And it’s such a vicious cycle; you need some cheering up when the numbers let you down so you indulge in some comfort food, which exacerbates the problem. Then, you feel guilty for having the chocolate (or whatever the poison might be) and get even more down. At this point, it’s harder to feel good. Depression can sneak in and it takes quite a while to get back on the tracks again.
Every day that I feel like I could take on Mount Clean-the-Windows I have a little celebration and tell myself “well done” and “see, you can do this”. And I tell myself that all the carb counting, the sums in figuring out how much insulin to take for this meal and the watching every single bite that I put into my mouth is worth it. It’s encouragement to keep it up.
But then, there are days when you have that sluggish-tired feeling and you try to determine what your body is telling you. You feel like sitting in front of the telly and watching hours of Nickjr or Playhouse Disney with the kids instead of testing your blood sugars.
It pays off though when you do make the effort and test because when you get a good number you realise that it’s the fact that your body is just plain old TIRED and it’s nothing that a good night’s sleep will cure…. Sometimes, getting a good eight hours of sleep is more difficult than diabetes:-)

Getting the New Technology & Treatments for Diabetes.

So you’ve heard about the benefits of the insulin pump and continuous glucose monitors and sensors. And you’re thinking “I might just get my diabetes under control if I have one of those”

How do I get one? Well the answer is that it’s not as easy as just deciding to get one.

In Ireland, people with diabetes get all of their medicines and medical supplies, relating to diabetes for free on the Long Term Illness Scheme, which is fantastic! However, when a new treatment comes on the market such as the insulin pump which costs €5,000 and then about €100 plus per month for the supplies, not to mention what it costs to have specially trained medical staff on call 24/7 to support the pump user, the people who foot the bill start to ask questions. Understandable!

So, the most common replies to questions about the pump are that there are problems with funding the staff needed to provide pump support. (I might add here that the suppliers of the pump actually provide the patient training.) Then, you will be told that the HSE won’t approve the funding for the pump.

It is a very savvy customer/patient who will pursue this quest after that.

So what happens if you want something like a glucose sensor? And your medical team just won’t discuss it with you. The supplier, obviously, wants to give it to you; you’ve done your research and decided that you want it. Surely, there is a way that you can overcome these problems.

Maybe it’s time for the Health Insurance companies to join this debate. Maybe in order for them to prevent us from claiming huge medical bills for kidney disease, limb amputation, hearts bypass surgeries, etc., they should be working with Roche, Abbott, Animas, Medtronic, etc. and helping people with diabetes manage our disease better?

How do I feel about Diabetes?

I know I have a positive attitude when it comes to my diabetes. But, just for a moment, I’m going to explore the negative feelings that might surround it. Why am I putting myself through this? Well, I met with my friends with diabetes recently, and we talked about all of this stuff – you know “feelings”. So I am actually dwelling on it a little and feel that in order to expel it I have to write it.

The first negative thought in my diabetes journey was just after diagnoses. I wondered if I had given myself diabetes, did I do something that brought it on or was it karma for something horrible I did in my past life that I didn’t know about yet?

Other feelings that creep in are;

The Burden.

Ultimately, this disease is about “self-care”, which means the responsibility of keeping well & healthy is my burden. Yeah, I could share it with the people who are most important to me but why would I burden them? I feel I should be able to carry it all by myself.

The Guilt.

Deciding to have children and what if they have diabetes too. I would blame myself and find it difficult to live with.

The Doldrums.

The feeling I have when, no matter what I try, the blood glucose numbers are too high and I can’t get them down. I start to feel awful, physically, and then, start to feel awful emotionally, and the will to keep trying disappears, making it harder to break the cycle.

The Fear of the future.

This one was a surprise to me because I think that when it does surface I quickly push it back. This feeling is all about what I have to look forward to; a life without sight or without limbs? What will happen to me when I get old and can’t take care of myself and have to depend on others? Do I put myself in a nursing home where the staff is not properly trained in diabetes care, or do I ask one of my children to become my full time carer?

So now it’s out there and I’m going to shake it off. I’m going to focus on taking it one day at a time; one blood glucose reading at a time. I’m going to find the stories of inspiration like that of Gladys Lester Dull aged 90 years and living with Type 1 diabetes for 83 years (from 50 Secrets of the Longest Living People with Diabetes by Sheri Colberg & Steven Edelman). I’m going to focus on the fact that there is always more to learn about diabetes, new medical advances every year to bring me closer to a cure and most of all, there are more people to meet with diabetes that radiate positivity.

It can be done!

I get so mad at my Doctor

I recently had a conversation with my consultant endocrinologist’s secretary that left me so annoyed, I had to wait until I calmed down to write about it.

On Thursday, 27 May 2010, I received a phone call from my endocrinologist’s office. It went something very close to this;

Secretary; “Gráinne, I’m calling with your fasting bloods results.”
Me: “my what? The bloods weren’t fasting- do you mean my HbA1c?”
Secretary: Your Hb mm… yes. The result is 7.0 mmols and the Dr. says you have to do better.
Me: What!

The conversation continued for a couple more minutes and I remained polite and civil because I knew the secretary was just doing what she was asked to do - blindly.

Firstly, I was so upset that I really didn’t know how best to react. How do you react to being told that “you have to do better”, especially when you think you’re doing everything you possibly can to begin with. Being told this made me feel like having diabetes is all my fault, and that I’m clearly not managing it very well so again that must be all my fault too. It also made me want to head straight for that chocolate tin or the pint of ice cream.

Secondly, if I asked the secretary how I should do better, I doubt he/she would have advice and instructions about my diabetes management should come directly from my endocrinologist and not from someone who isn't qualified to answer follow up questions. Afterall, that's what I'm paying for (yes this is the private health system in Ireland I'm talking about).

And thirdly, how am I supposed to do better with a one sentence instruction? This doctor gives no specific instruction other than to have lots of bananas (???). Dr. X doesn’t talk about carb counting, sliding scales, insulin to carb ratios, testing or anything useful. I need a conversation on how I can do better that offers me options and realistic goals.

I think it’s time that I said to my endocrinologist that he/she should do better – I am paying €100 per visit and maybe it’s time it was earned. Maybe, it’s time that she trained her staff appropriately too. And while I’m at it, maybe it’s time she acquired some better time management skills instead of taking patient phone calls during consultations.

I should give my hubby a break and direct my rantings and ravings at the person responsible for them.

Update - I did leave this endocrinologist shortly afterwards for one who is so much better and when the secretary called one last time with my lab results with the same message I did reply “yes, it’s not good enough”. She then asked if I wanted to schedule my next appointment, I said “No, thanks!” and hung up :-) It felt FANTASTIC!!!

Why Diabetes? Why me?

When I was diagnosed with diabetes, it was 1993 and I was a 20 years old student; living the typical student life. That all changed with diabetes. For a very long time I only knew what I absolutely needed to know about diabetes to survive. I fought it but not in a good way. My attitude was that diabetes was not going to get in my way! My friends and family would ask about it and how I was getting on, I replied “fine”. I had no idea of how I was doing, health wise, my medical team didn’t talk my language, I didn’t asked questions, and I didn’t want to be there.

What changed? I met my now husband who had decided I was worth having around for a long time, and convinced me I was worth it.

I started internet searching for information on diabetes to give to him and I started learning about diabetes for myself. Things like how exercise affects my blood sugars, about how insulin works once I inject and how food affects that process and lots, lots more. I even met another person who had type 1 diabetes who I couldn't push away because she was the wife of my husband’s friend.

Through this friendship, I realised how important it was for me to have people my own age around me who knew what having diabetes felt like.

I’ve come a long way since then. I started a support group for people with type 1 diabetes in my home town in 2007 and my diabetes family has grown quite a bit. People call me with their stories and I listen, hoping that in some way I'm helping them. I wished that I had had someone I could’ve talk to in the beginning but knowledge about diabetes was poor back then.

Now, I want to inspire people to go out in search of the knowledge they need to live a great life with diabetes. I want to encourage people to start reading the numerous books on the subject and to find other people with diabetes on the internet or in their area. More and more supports groups are forming around the country and if you don’t have one in your town yet then find us on the internet. We’re here!