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Sunday, 19 May 2013

Diabetes Blog Week Day 7 - Spread the Love

As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. (Thanks to Pearlsa of A Girl's Reflections for inspiring this topic.)

Arrghhh so hard!!!!! I have read so many amazing blogs this week. 

So I decided to spread the love based on the relatability to my life. By relatability to my life, I mean that they didn't relate to my life (well except that they are about diabetes). I know what it's like to be diagnosed as a T1D as a young adult out of home, without much family-based support. But I don't know what its like to have diabetes from childhood, what its like to have type 2 diabetes, or what its like to be the mother/father/partner/sibling of a diabetic. So I took this as an opportunity to learn about the different situations people are diagnosed in and live with.

1st up - I discovered Meri's blog , 'Our Diabetic Life' - a mother of not 1, not 2 but 3 diabetic sons. I complain about my diabetic costs - she has 3 x those costs and  deals with it all as well as having lost her husband. Mind blown. So much in awe of her strength. Her blog is witty, loving, and emotional. I love reading about D-mum's and just how much they do for their kids. 

On the topic of D-mum's I will take this opportunity to shout out to J, our resident D-mum on MyD. We all know if we have an issue she will have an answer, and one that is helpful. She is also very encouraging, and I love her feedback on my blogs :)

2nd blog I would like to share around a little is that of Carol from 'The 9 Inch Plate'. The wife of a type 2 diabetic, so I was interested in this blog for more than 1 reason, probably the most prominent reason being that I often always wonder how my partner is dealing with my diagnosis. The progression her and her husband have made is amazing - I love seeing how they are a team against diabetes. She also posts some yummy looking recipes that I will have to try out.

Lastly I decided to immerse myself in reading the blog of Jessica of 'Mastering Me'. Yes we both have T1D, but she has had T1D for a lot longer, and was diagnosed as a child. She has had diabetes for long enough to let it slide a little, and have to reinvest herself in her diabetes care. I was super excited as I read to see how she handles everything, because one day in the future, when I have had D for a while, I might hit a bit of a wall, and need to remember that other people have done so and lived through it to. A very inspiring young lady .

Saturday, 18 May 2013

Diabetes Blog Week Day 6 - Diabetes Art - I Poem Badly

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

At first I cried, and screamed and yelled,
Ovderwhelmend by an endless river of tears,
an endless river of blood
Seeping from my fingertips
An endless line of insulin
Infusing into my skin

My life had changed before my eyes
In ways I didn't want it to,
In ways I couldn't bear
And it took awhile for me to be able to see
That my life was still there
Hidden behind my disease

So I scrambled and dug at the dirt of diabetes
I found the positives in my life still to be
I thought of my love, my future, my pump
And made a new place in my life
For Morty to dwell
Behind the scenes,behind the life of me

So I poem badly with words....haha. I originally did a quick word cloud in an art form to try to see what I wanted to express. Below is my word cloud, and I hated it, although I liked the subject matter: The positives in diabetes. The poem eventually became about being positive and finding a future with diabetes, seems to be my theme this week :).

My partner asked me if I used real blood....uhmmm no, no I did not. I know we get bleeders on occassion but sheesh!!! I did however get to paint my hands, which I love doing because it feels so bizarre.

Friday, 17 May 2013

Diabetes Blog Week Day 5 - Freaky Friday

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

Give up my disease? Hell yes! Running at that faster than if I have my father's murderous 30 year old cockatoo biting my heels. But take another disease in its place? Alarm bells ring and I approach with extreme caution. This swap, will it gaurantee no added chronic diseases? Does it gaurantee I won't get diabetes again. No? Then I'm not in. I have only had Type 1 Diabetes for 1 year and 2 months of my 23 years on this planet, but in that 1 year and 2 months I have come to know how to handle my disease. The 1st few months were absolutley nerve wracking and I don't want to go through something like that again. I can handle my diabetes, for the most part, and feel like I have had it my whole life. I don't remember life before it anymore. My brain believes it has always been finger-pricking, I don't remember food without the obligatory insulin jab.

Of course, you could say, well why not switch to an easy disease, one of those tablet only chronic diseases. Just drawing on my very small expertise of what other chronic diseases are out there: Like what? Hypertension? Graves' disease? They sound easy - actually I have high blood pressure. Or so I was told. They aren't easy 'tablet only' diseases. I'm scared of diabetes complications. I would be scared of high blood pressure complications - heart problems, eye problems (yes, it can cause eye damage). I would be scared that if I forgot that 1 little pill, I might have a heart attack. Thats a lot of pressure to remember to take that pill everyday. If I forget a dose of insulin? I correct when I realise and move on. I can deal with the ups and downs of diabetes now, I don't want to deal with something else. And Graves' disease? Before I was diagnosed I remember being at work one day thinking: If I had to get one of these chronic illnesses I would take a thyoid condition. I had overhead the parents of an 18 year old boy become hysterical at his diagnosis of Graves' disease. And I thought, so what? He takes a tablet and is done with it. But I have been at my job longer now, and added my own chronic disease, and I know thats not the case. Weight problems, anxiety issues, in remission & out of remission, surgery or radioactive iodine therapy - Yay Graves' disease!  His mother was balling her eyes out, talking about how it was a conditon for life and how it would change everything and he would never be able to do anything again Honestly, I do think his mother's chronic case of a bad outlook on life is one of the worst chronic illnesses out there.

So I will stick to my diabetes, please and thank you. I like my support group too much.

As for the 2nd part of todays blog - Absolutely the DOC has changed how I treat other people with medical condition. So many people in the DOC have co-existing illnesses that you read about, and I know from dealing with my own 'invisible illness' that you never know what someone is going through and how it may impact on their life. Being involved in the DOC has taught me to stand back and respect each person's struggles, and let them deal with them in their own way. We all ask for help when we need it and it is always provided if requested. If not, we know how much we hate when people butt in. 

Thursday, 16 May 2013

Diabetes Blog Week Day 4 - Accomplishments Big & Small

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

Accomplishments. The whole last year of my life has been one giant accomplishment. Learning to take shots, hating them. Pushing hard for the pump and getting it just a few short months after diagnosis. Finger-pricking. Finger-pricking by my own choice many many times a day (Seriously, who does that?). Getting a recent HbA1c of 6.0%. Learning all the secrets of my body, that only diabetes could show me.

But my greatest accomplishment? After mourning for the loss of my 'normal' life, was to realise that I still had a life, and more importantly a future. This took awhile. When I was fist diagnosed, in those first few hours when I was sitting alone in a tiny room in ED, I wasn't at all ready to face up to this being for life. First up I hoped against hope that I was pregnant, and that my diabetes was just the worst case of early onset gestational diabetes ever. I even convinced my boss' registrar (did I mention my boss also works at the hospital I went to when diagnosed?), who she had follow me around like a puppy, to do a pregnancy test. It was unsurprisingly, negative. Which was a relief, because children are also, apparantly, for life.

I left hospital and wished for days, weeks even, that it was all a bad dream. I ignored the 'for-the-rest-of-my-life' aspect. I still do for the most part. After eventually accepting I had diabetes (although I maintain not for life) I found that I had 'shut off' from my future. Before my diagnoses I loved to imagine what sort of career I might have, what my kids would be like, where I would send them to school, where I would travel and when I'd get married. I imagined a life on a property, in the middle of nowhere.

When I got diabetes I stopped thinking of the future. I felt like there was nothing in my future any more - those kids names I had picked out were gone. Distant dreams that I felt were no longer attainable. It took me awhile to realise I could still do and have everything that I wanted. Many many months to realise this. But I did. I'm happy to report that I now see a future again. I try as hard as I can to maintain that vision.

Wednesday, 15 May 2013

Diabetes Blog Week Day 3 - Memories

First Up - This is my NEW blog seeing as are a load of fly blown horsepoop, to put it nicely. So none of my old content is here currently, until come online and I can export it all and reimport it here. Fingers crossed its not lost forever. Anyway, onto to todays blog:

  Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. 

Nervous. Sweaty. Scared. My hands are numb, and not from the temperature, despite how cold it is. The object is placed before me. I don't move. The object is nudged closer to me. I pick it up, feeling the smooth curve all around. A clear-blue hard-plastic casing that houses all my dreams. I tentatively rip the brittle outer casing off. My fingers find the ridges on either side, and I squeeze gently. Nothing happens. I am encouraged to try harder, and apply more pressure. I am taken aback when the top springs off and clatters onto the floor beneath me, bouncing. The sound is shocking to my nervous ears.

I hesitate, and unwind the long, clear tube. Around and around and around I pull it, almost hypnotic. Too fast, it snags and I am jilted back to reality. I am fearful of breaking it, it seems so fragile.

The next step, I am reminded, is to remove the outer tube protecting the point and the 'snail' as she calls it. I do. I hold the entire object, squat in my palm. It is almost time now.

I pull back on the bottom of the hard blue case. *click*

My stomach  retracts at the cold air as I lift my shirt. I get even more goosebumps as my skin is roughly swathed in a cold lotion that smells so sterile. This is it.

I hold the rounded object, much like a half a pokeball to my stomach. I distract myself with thoughts of how awesome it would be if it really were a pokeball. My partner and I have already decided we're going to name our future son, should we have one, squirtle.

Back to reality. I breathe in, *pop*. Hang on, I was supposed to be able to breathe out first. I look down, shocked. It didn't hurt. I withdraw the sharp, dull steel from within my body. Inspect it, twirl it around and scrutinise every angle of this thing, this thing that in other forms had caused me pain. But not now. Not this way.

Victorious and ecstatic, I toss the now-useless blue inserter aside and jump around. My educator raises her eyebrows. I can't feel a thing. The stark white cannula is obvious against my pink skin, but I don't care what it looks like. I just care that for the first time in 4 months, I feel like I can face this, face my disease. I'm not afraid of this like I was the needles. I realise, I can have a life again.

Just to clarify, this is when I first put a pump cannula in, because I had already covered my diagnosis here.

Diabetes Blog Week Day 2 - We, the Undersigned

Recently various petitions have been circulating the Diabetes Online Community, so todaylet’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley ofinDpendence for this topic suggestion.)
When I read today's topic, I thought it had me stumped. I thought I couldn't do this. Obviously, I have an interest in the politics surrounding my disease, like access to new technologies (CGMS, the pod pump), laws that affect what we can and can't do (driving, certain jobs), how the health insurance and other companies treat us. But I don't want to, I'm sure they will get covered by other people who have spent longer looking at those issues and actually know what they are talking about.

So I would petition diabetics. To gain that knowledge about diabetes to be able to change diabetes in Australia.

I read an article recently in one of medical journals at work, where a study suggested only 4% of diabetics had more than a basic knowledge of their disease. How can we properly educate the people making policies regarding our disease if we don't know our own disease. It seems now like an 'every man for himself' situation when it comes to standing up for what we want, and I believe its because we don't have enough knowledge to understand the full impact across the whole diabetic community. If we all took the time to learn as much as we could about our lifelong disease things like Type 2 Bashing wouldn't happen (yep, I'm calling it. I've seen it done in the past few weeks and it's horrible. I would hate to be on the receiving end of that from people who have the same disease with a different number as me. We're all in this together).  The number of T2 diabetics with a genetic cause far outnumber the amount of type 1 diabetics hanging around. The difference between us? The way our pancreas handled it. For a type 1 it packs in straight away, for a type 2 it might show up as less insulin production than needed for what is consumed, or insulin resistance. How much more could we change if we recognized the facts of both major types of diabetes (and even those lesser ones, likeCFRD, which I discovered the other day and then hounded my boss for information on) and helped each other face the world?

If we are educated, other people will be educated. We might not get so many dumb questions or things said to us. Perhaps those hapless members of the fully-functioning pancreas club have gotten their information from what they consider a reliable source - another diabetic? Yes, it happens. Just after I was diagnosed, I had a fellow diabetic rag on Type 1's, thinking that we had diabetes 'so bad' that it required insulin. Then a few months later got a similar story from an elderly T2 gentleman that I had met. He apparantley had another T2 friend who got sick, went into hospital and his diagnosis was magically changed from Type 2 to Type 1 because they had started him on insulin in addition to his oral hypoglycaemic agents. These silly comments burst from the mouths of diabetics more than you think.

So, I the undersigned, petition everyone to pick up a book, or your endo's brains and gobble up information on our disease faster than we would a massive piece of chocolate cake on a newly filled reservoir. It can only help your health.

Tuesday, 14 May 2013

Diabetes Blog Day 1 - Share or Not Share

I joined up for Diabetes blog week. Fun stuff. Read about it here.

So for today's topic, we were asked to pretend our medical team were reading our blogs. Imagine that! Getting to know us instead of the numbers.

I guess some people might find it confrontational to share more than their numbers with their healthcare professionals. You go to your endo maybe 4 times a year, talk HbA1c, talk lipid profile, talk BGs.  You see your educator and they teach you how to push the buttons on the latest gadget they can give you and talk even more numbers, insulin dosages, correction factors. So people might not necessarily offer up themselves, as people, owning their diabetes. All they do when they visit their HCPs is present the disease.

How would I feel about my HCPs reading my blog? I'm in a unique situation. I work for my endocrinologist, my main HCP. I was already working for her when I was diagnosed. So before she knew my numbers, she knew me. We're both massive movie buffs and happily advise each other on what we've seen cinema wise. We take lunch at the same time and talk about holidays, our partners, our mothers-in-laws (or for me, my future mother-in-law). I have no issues with her seeing anything. We have a policy where I just leave my log book on my desk, on the current week. She can see it anytime. She knows if I don't leave it out, I'm having problems, but she lets me get on with it quietly. She knows I like to figure out and play around with things myself first. She also knows I will ask if I need help. Like I will just blurt out any random thought I have, in front of anyone. I'm sure she hates it. So for me, I don't think I would have any problems sharing my blog with her. I don't even think I mention her, unless I say how awesome she is. I love her as a person before I love her as my endo.

My DE is a little different. I didn't know her before I saw her. I knew of her, because she is who we refer to. But I had only ever emailed information regarding mutual patients. On my 1st visit she treated me in that same clinical way that my GP used to treat me (please note the used to. Last time I was seeing the practice nurse for an updates care plan, he saw my name on the practice software and pulled me in for an impromptu consult JUST to wish me a happy easter). Halfway through my consult with my DE she asked where I worked. Endo revealed. The consult changed. It became so much more about what was best for me as a person, and not me as a patient. Because we clicked over something,  I felt I could be more open with her.

I think thats important. Be open with your healthcare professionals. Blogs are open, a public forum. You can pour your soul into a blog, and you can get to know someone 76965km away through their blogs. So why would I not award that same courtesy, of seeing who I am as a person, and not just as a disease, to my healthcare professionals? How can they possibly do their very best by you, if you don't want to let them know whats important in your life for your health management?

I love my HCPs, all 3 of them, and would never say anything bad about them. If I have an issue with a decision they have made for me, I will tell them straight up, so it never even makes it to my blog. So me? I'm happy to be an open book. I think if you want the best from your healthcare professionals, you have to let them into your life. If you lie and hide your true feelings about your health, they can only help you based off that misinformation, and that's not going to help you. Respect that they have spent years studying how to help you, don't waste that.