Month: April 2016

I Wish People Knew That Diabetes

5 Comments

iwish-logo

Last year, I Wish People Knew That Diabetes showed me the great sense of community that exists within the Diabetes Online Community. Today is the second annual I Wish People Knew That Diabetes day, and I’m sharing a few of mine right here. Jump onto social media and share yours today using #IWishPeopleKnewThatDiabetes. Creator Kelly Kunik has written about it here and be sure to check out the official I Wish People Knew That Diabetes website at iwishpeopleknewthatdiabetes.org.

I Wish People Knew That Diabetes education, healthcare, supplies and insulin are not equally accessible in all parts of the world.

I Wish People Knew That Diabetes has given me a voice, and a passion that I feel so strongly about in life.

I Wish People Knew That Diabetes has not stopped me from living a relatively normal life.

I Wish People Knew That Diabetes means that I can eat anything. I just need to count carbs and give insulin shots.

I Wish People Knew That Diabetes means I know so much more about being healthy than I ever did in my life before.

I Wish People Knew That Diabetes makes me feel guilty and judge myself.

I Wish People Knew That Diabetes is more than scare tactics, threats and complications. There are real people living with it.

I Wish People Knew That Diabetes campaigns are not always representative of people who are actually living with diabetes.

I Wish People Knew That Diabetes has a lot of stigma and misinformation attached to it.

I Wish People Knew That Diabetes is not something that ANYONE asked for.

I Wish People Knew That Diabetes is not necessarily caused by being overweight or not exercising.

I Wish People Knew That Diabetes does not make me a “diabetic.” I am a person with diabetes.

I Wish People Knew That Diabetes wreaks havoc on my emotions. At any given moment.

I Wish People Knew That Diabetes interrupts my sleep. Every. Single. Night.

I Wish People Knew That Diabetes affects those who love me, just as much as it affects me.

I Wish People Knew That Diabetes makes me feel isolated and alone at times.

I Wish People Knew That Diabetes is so much better with the support of the Diabetes Online Community.

I Wish People Knew That Diabetes means I get to chat with the wonderful Oz Diabetes Online Community on Twitter every Tuesday night at 8.30pm AEST.

I Wish People Knew That Diabetes has given me connections all over the world, some of whom I call friends.

I Wish People Knew That Diabetes is something that fits into my life. Not the other way around.

I Wish People Knew That Diabetes is not something to be ashamed of.

I Wish People Knew That Diabetes has made me a stronger person.

I Wish People Knew That Diabetes is never easy.

I Wish People Knew That Diabetes doesn’t mean that I see myself differently to anyone else (even if I am…)

I Wish People Knew That Diabetes means that I can still do amazing things.

 

(Today I’m dreaming of the amazing Coffee and Cannoli at Rossinis on Sydney harbour…)

Sticking Up For My Diabetes at Work

1 Comment

During a diabetes at work themed OzDOC chat a few weeks ago, I was reminded of an instance where I was given a hard time for leaving work early for a diabetes appointment. During the discussion, I shared how confrontation and explanation had really paid off for me in the long run.

I am fortunate that I have the luxury of starting work early, and finishing early. This gives me a little more flexibility in tending to any diabetes related demands in the afternoon, or simply taking some time to breathe.

However, appointments to see specialists at my diabetes clinic often do fall during working hours. I attend a diabetes clinic in a public hospital, meaning appointments are in high demand and often carry a long waiting list. The clinic is only open 4 days per week, and specialists often gravitate between a few places of work. I am in no position to simply cancel an inconvenient appointment, or reschedule at a time that suits me.

I am always transparent about attending diabetes appointments during work hours. I will supply my employer with the hospital confirmation letter confirming where I am. Even if the appointment is at 11am, I will still come in for a few hours during the morning just to show that I am being honest.

I consider myself a pretty reliable worker. If I’m not at work by quarter to seven in the morning, you can probably assume that something is wrong. I call in sick very rarely. I always pitch in and help where needed. Diabetes rarely interferes with my work, and many are surprised to learn that I have it.

It really hurt me that I wasn’t automatically trusted in this instance. I thought I had a decent relationship with my boss, even though he’s not around too often. But the truth was, I don’t think he had ever heard from me that I had diabetes. Besides, I refused to let this slide out of principle.

I explained the situation. I explained that I had diabetes, and that I see specialists to look after my condition. I explained that it wasn’t always practical to be able to obtain appointments outside of work hours. I also made the point that I could have called in sick and presented a medical certificate. Instead, I gave notice and came in for a few hours to help the team out during the morning.

I think I took him by surprise. I dare say I made him feel guilty for it. I think it simply came down to a lack of understanding, which was easily rectified with education and information. 

Ever since, I haven’t had any problems with work and diabetes. I get asked how everything is going, which is kind of nice. I’m taking some time off work during an extremely busy period to get my insulin pump next month, and so far everyone’s been respectful of it. 

Talk. Explain. Educate. In most cases, they simply don’t know. Sticking up for myself in that situation was one of the best things I could ever have done for myself.

Join our weekly diabetes support chats Tonight from 8.30pm AEST by following #OzDOC on Twitter. Tonight we are playing a game of “have you ever…“

Glucose Monitoring Doesn’t Tire Me. Diabetes Does.

1 Comment

I rely heavily on glucose monitoring in order to manage my diabetes. I check before, and two hours after every meal. I check before I go to bed, during the night and when I wake up in the morning. If there are times when my blood sugar is irregular, I find myself testing every hour. I have spoken out frequently about glucose monitoring, and how strongly I feel about it.

I was very keen to take part in the yourSAY (Self Management and You) research a few months ago, looking into the attitudes towards glucose monitoring in Australia. I was very much looking forward to reading the results that were released last week by Diabetes Australia, Abbott and JDRF Australia.

YourSAY Glucose Monitoring Survey_INFOGRAPHIC

Monitoring my blood sugar has become second nature to me. I can’t say that I’ve ever lacked the motivation to test. I hardly even think about it anymore. Glucose monitoring is not something that I see as a choice. It’s a way of life.

In that regard, I was surprised at how many people reported that they became “tired” of glucose monitoring. I think I’m more “tired” of diabetes itself. Diabetes is to blame for the lows that force me to stop what I’m doing. The stubborn highs that just won’t go down. The nights where my sleep is interrupted by blood sugar swings. The food that I feel guilty for eating. My glucose meter is only the messenger, telling me what’s going on. My meter gives me a sense of control over the unpredictability of diabetes, and I wouldn’t want to live without it. (Unless diabetes is cured, of course. Then I would love to live without it…)

While my attitude remains unchanged, glucose monitoring is without a doubt inconvenient. When I’m sitting at my desk at home with my meter within arms reach? Easy. When I’m going out for a few hours, and forced to carry that crap around with me? Not so much. I’ll often leave my stuff at home and fly blind for a few hours just for the sake of convenience. I would love to see an affordable, minimalistic device that offered greater convenience while travelling.

I was also interested to read that type 1s checked their glucose on an average of 6 times each day. Yet our National Diabetes Services Scheme only subsidises 5 test strips per day. 2 in 3 people do not always check their glucose as recommended by their GP. The survey itself highlighted a number of benefits of glucose monitoring in managing diabetes: adjusting insulin, managing illness, avoiding hypos or hypers, and peace of mind. Yet I was once made to feel guilty for purchasing too many test strips. Surely, removing these limits would be the first logical step towards encouraging glucose monitoring?

Finally, I was disappointed that these findings did not outline or commit to any solutions to lessen the “burden” of glucose monitoring. I can only hope that this research will trigger conversations and change in the not too distant future, for the sake of the people who took the time to contribute their valuable and personal insights.

You can read the full results of the yourSAY survey here, and the media release here.

“Do You Use a Lot of Test Strips?”

2 Comments

DSC00609

“Do you use a lot of test strips?” My pharmacist asked me, as I placed a handful on the counter to purchase.

I went silent, lost for words to answer his question.

“Yeah, I do,” I replied.

I was wondering if I was going to have to justify myself. Was this going to be another big dilemma where I would be told that I’m using too much? Was the computer going to tell him that I’d gone over the limits and couldn’t purchase any more?

“Do you see a diabetes educator?” He asked.

He sounded like he wanted to suggest something. That I needed to get help?

“We’ve actually got a little boy who comes in here. He’s got this little sensor that he wears on his arm that measures his fluid. He swipes over it, and it gives him his readings. He doesn’t have to prick his fingers so much. It even gives him a history of his readings.”

I smiled, because I knew exactly what he was talking about. “Yeah, that’s the Freestyle Libre,” I replied.

A little over a year ago, I wouldn’t have even known anything about this. I would have just stood there and politely nodded, but disinterested all the same. I’m so proud of the interest I’ve taken in diabetes over this past year. I love how passionate and how “in the know” I feel around the subject of diabetes. I loved that I was able to hold up that conversation and sound like a bloody expert. The happiness I felt for that little boy and his mother was so real.

I know that he was genuinely being nice, but I still felt I needed to justify myself before walking out.

“Just because I use a lot of test strips, it doesn’t necessarily mean I’m struggling with my diabetes. That’s the common misconception among healthcare professionals. Regular testing is just something I do that helps me to manage my diabetes.”

“And just because I’m buying them, it doesn’t necessarily mean that I’ve run out of them at home. You’ve gotta stock up, right?” I said, thinking fondly of this “Clean It Out” prompt from Diabetes Blog Week last year.

Changes To The NDSS From July 1, 2016

6 Comments

428b8bb8-378a-4ed4-8432-09f6fae38613

From July 1, 2016, the Australian government is introducing changes to the way that people with diabetes access subsidised diabetes consumables through the National Diabetes Services Scheme (NDSS). This includes test strips, insulin pump consumables, needles and syringes.

People with diabetes will no longer be able to order their consumables through Diabetes Australia, or state and territory outlets. There will be a number of new NDSS access points created in response to this change, promising greater access and convenience for consumers.

I’ve always accessed consumables through my local pharmacy, which is an NDSS outlet. However, I expect that there are many people who would prefer the convenience of ordering in bulk. Prior to these changes, people were able to order a 6 month supply of consumables from Diabetes Australia and have them delivered to their door.

I know personally how difficult it is to purchase in bulk, or to “stock up” at a pharmacy without having uncomfortable questions asked about why I need so much. I try to get around this by making more frequent visits to the pharmacy and purchasing in smaller amounts, but doing so does take away the element of convenience.

Another big change will see people with type 2 diabetes who are not using insulin restricted to a 6 month supply of test strips. Further access to strips will be in the hands of a healthcare professional. To quote the Department of Health, “people with type 2 diabetes not using insulin do not need to constantly monitor their blood glucose levels with strips.” 

The decision to use glucose monitoring to manage any kind of diabetes is an individual one. This decision should be in the hands of the patient, and not the healthcare professional. By taking away this element, I don’t believe that we are empowering people to manage their diabetes. Although I’m a type 1, I’m a high user of test strips and I couldn’t imagine my life without them. I wrote about this change in more detail here.

6 month test strip limits will also apply to Aboriginal and Torres Straight Islander people with type 2 diabetes, who access their strips free through Aboriginal Health Services.

These changes are obviously designed to make the delivery side of the NDSS more efficient and cost effective. The government promises that funds saved will be reinvested into support and education programs run by Diabetes Australia, and state and territory organisations.

Most importantly, though, in my opinion, is that I won’t be forced to pay any more for my diabetes supplies as a result of these changes.

You can read more about the upcoming changes to the NDSS here.