Judgement Day

Come on Arnie, bring it on. Tomorrow is Judgement Day. My first visit to the Endocrinologist AKA Diabetes Doctor,  in over 8 months. And my last blood results, given to me by my Gastroenterologist, AKA Stomach Doctor, over the phone, were a few months back where he informed me that “everything is fine in my department, but as for your Endo’s department….” “EXCUSE me? I butted in, “whose department? “

Forgive me but I thought that my diabetes was MY department?

“In any case” he said, “your diabetes control is crap at the moment”. “Yes” I screamed (in my head), I just got through telling you that my diabetes control has been CRAP due to my ever increasing problems with my stomach and the ongoing battle with Gastroparesis – which in case you forgot what you trained for – is YOUR FRIGGING DEPARTMENT.

Silence.

So I had more tests done on the weekend, ready for tomorrow’s appointment and now I wait for Judgement Day.

My tummy troubles have been getting worse so I don’t expect things to be much better. My frozen shoulder is still stuck. My diabetes control is still as it is. My life has not changed that much. Don’t get me wrong he is a wonderful man and doctor, but it still feels like walking in to see The Terminator every time I go to any of the many “ologists” who frequent my life.

“Hop on the scales” he says. “Ok” I say, madly thinking what can I realistically take off without getting nude here, to reduce the weight on the scales? Shoes, yep, socks, yep, jacket, yep, jeans – ummm, nope. Ok get on the scales but stand on tippy toes, to try and decrease the weight, just like I am floaaating in a balloon…never works.

Next, let’s look at the blood results. Lots of numbers are read out to me. Usually most are ok. Giving me no real reason for why I am so exhausted, so worn out, so over things……except those times I did have low iron…

“Looking at the overall picture”, he said to me last time, “if we take out the fact  you have had a frozen shoulder for 3 years, you have type 1 diabetes, arthritis, sjoren’s disease, gastroparesis, IBS, reflux, low vitamin D, a small goiter and a few other more minor issues – really, you are in excellent health”.

Oh that is good then, I thought.

I am usually a very positive person around my health.  In fact I am often quite oblivious to the fact that I live with chronic disease and multiple conditions I need to manage. I take life well and truly by the horns and shake it madly. I am happy, I love life and I live it fully and at speed. I have an amazing family and group of friends, I love my work and have many pleasures in life.

However even I have my days where I think, what now? I am over it. What is going to happen to me? Usually this is when things get a little worse with my health, get a little trickier, change in some way. At the moment I am considering the fact that 4 years is a long time to live with a frozen shoulder and so may have to have an operation – this is challenging.

Mostly though with ever increasing problems with my digestive system and ever decreasing foods I seem to be able to eat at the moment, I must say I am feeling a little anxious, lonely and even scared. When they told me at 12 I would lose my eyesight, kidneys, lower limbs and never have healthy babies, they left out the bit about damage to all the nerves from the top to the bottom of my digestion…but thank the universe (or just luck) I still have my eyes, my kidneys, my legs and my 3 beautiful healthy boys.

I am hopeful that Judgement Day tomorrow may bring me support and an open ear. Rather than a closed mind and a huge bullet.

Come on make my day.

Today I had one of those diabetes milestone moments, I completed a triathlon. For a long time, decades, I always wondered if I would be up to a triathlon. There is the BG issues, the food intake and prep issues, there is the non-stop nature of the event and then there is the fear, fear of having a go.

This morning I balanced my BS readings, I kept them a little higher to ready myself for a sudden drop whilst racing; starting BS reading was 12.5. Next thing, two sugar snakes in my gob moments before starting and a couple of marshmallows in my transition area for when I returned from my swim.

After filling myself with water and peering a couple of times, I told the race admin I had Type One and gave them my race number, “One” and got ready (there was nothing on any form to say I had diabetes!). I handed my insulin pump to my wife for safe keeping and now it was up to the exercise to be the control and me to keep tabs on that.

Then heading down to the beach, wettie on, hat and goggles’ primed, the gun went off and we were racing. I now remembered how hard swimming faster than usual is – I felt sick from the cold shock of the water than anything else, this is Tassie. However, pushing through I noticed I was not last in the pack. Returning to the transition area after the swim, I eat my quick 2x marshmallows, have a sip of water and get on my bike and run to the stat of that leg. I am feeling it – because of my lack of fitness and not my diabetes dudes.

After ten km’s of peddling non stop I feel like a whale, slowly cruising but not really getting anywhere. I think I need to do some cycling… The cycle did give me time if I needed to throw down some sugar but I did not feel I needed to.

At the end of that transition I am drinking as much water as I can and I feel all right. I ditch my bike and put on my hat and run to the road to do a few more km’s, this time with my feet. I fell off a cliff climbing last year and busted a few bones in my left foot so this is the first serious running I have done since that thing happened, so I was tentative to be honest. I am not a flash runner and I was soon only looking at the butts of other competitors. It went on and on and on and when I reached the final turn for the finish my wife and kids and friends were there cheering me on and I felt absolutely AWESOME! I completed the course minutes later and became a, triathlete. Very cool.

I am 40, I have two kids, a busy job, live in suburbia and have all the drama as any other middle class Aussie has. I am always aware of my diabetes and need to attend to that too. I am a diabetic of 37 years and have been on a pump for six months, I know that I have to be careful but I also know what is achievable. This triathlon was more about that than any other thing. It reminded me that even as I get older I can still do great things. Friends, things are often presented as impossible, specialist make you feel like you are not capable and family and friends often misinterpret diabetes for other every day occurrences. But I hope you never see things as impossible and look to new challenges as really possible!. During the triathlon I had a ball. Sure I am sore, but want you to know, you can do these things if you are prepared to have a go.

I control my diabetes and remain the winner. Have a good one.

P.S – My BS reading as 7.6 after the race.

An article today at “Australian Doctor” http://www.australiandoctor.com.au/news/no-proof-of-female-g-spot-   states that the female G-spot remains a “mythical location”, after an extensive literature trawl failed to definitively prove its existence.

Well folks, I can tell you I have found my “G-spot” and it is not really where you would think!

The G-spot for me and many other women, especially those of us who have children is “GUILT”.

Big, shiny, in your face, bring it on GUILT.   Forget the big “O” and meet -  the big “G”.

This G-spot” unlike the one described above in the Australian Doctor article, is easy to find…..

Just look at the face of any woman who has just had to say “no” to her child,  about anything.

Or who has just had to leave her screaming child with wet cheeks and hoarse cry echoing down the hall as she click clacks off to work. Who is enjoying her day at work, getting involved in creating something, talking to adults, being congratulated on her skills and intelligence, who stops suddenly as she remembers that wet little face this morning as she closed the child care gates with the big red sign on it stating “we have 5 cases of gastro reported today”……and finds the G-spot.

Who is spending the day home with her kids, but feels that dreaded “G-spot” at her back, reminding her she has a lot of work to get done, what about the deadline for that report next week?”Oh I forgot to call so and so back” “what will they think of me?” – instead of enjoying her time off with the kids. Cue – Guilt.

Or who has just secretly eaten a block of chocolate when she has promised herself she can diet, grasping on to hold handfuls of fat from around her waist as she eats it, just to remind herself she does not deserve this treat and will just get fatter (a CLASSIC way to find the G-spot).

Look at any woman who has just told her boyfriend, husband, lover – it is over, or who has finally slipped away for a night with the girls, or who knows her best friend is sleeping with someone else – but is too loyal to say anything to her friend’s husband. …..

Look at the face of the woman who has just thrown away her child’s drawings from primary school as she just can not find space to STORE it all, who has been secretly slipping her teenage son money so he has something to go out with but has not told her husband, who lets her child fall asleep in front of television, eat crap, lie around in the holidays instead of get involved in every activity on offer, who doesn’t go to their friend’s dinner parties preferring to curl up on the couch, whose house is not as new, as clean, as shiny, or as organised as her friends or the ones they show on those toilet cleaner ads on tv.

OR take a look at the woman who just does not feel in the mood to get into trying to find that other seemingly unfindable “G-spot” these researchers are so interested in when her husband comes up behind her with expectant eyes at the end of the night, when the kids are finally asleep and all she wants to do is drift awaaaayyyyy….

Yep, I have certainly found my “G-spot”.

Throw in living with type 1 diabetes and the old “G” goes crazy!

There is guilt from:

• eating too much carbohydrate
• not eating enough carbohydrate
• doing too much exercise
• not doing enough exercise
• being too fat
• being too thin
• not changing my finger pricker EVERY time I test (ummm what person with type 1 diabetes DOES that?)
• not washing my fingers before I test (what person with type 1 diabetes DOES that?)
• the results I get on that Blood Glucose Machine (especially if I am at a Diabetes event – try working with people in diabetes! It can really suck when you have it yourself and they are always asking you what the result was!!)
• not changing my insulin pump site every 2 days
• not exercising
• not getting the insulin ratio right (who DOES that?)
• will I give my kids this bloody disease one day……….

So next time you are looking for the G-spot – try looking at her face and you just may get it.

I have come to realise this after having 3 lovely boys. Now aged 18 years old, 12 years old and 3 years old they have brought me joy, tears, sadness, happiness, laughter, cuddles, sticky fingers (and floors), frustration, awe, imagination, pleasure and immense love.

Having children at all these different stage of life at the same time, I am on a magical journey where there are fairies, monsters, imaginary worlds with dinosaurs and robots, tantrums and undying love, whilst at the same time I am flung back into my own teenage years working out what to do in life, dealing with the challenges and problems of becoming a grown up – although I must say as a woman, working out how my son’s minds tick can sometimes be a challenge in itself!

Living with type 1 diabetes for 33 years and being told at the age of 12 that I would “probably never have children” and that IF I did they would probably be too large, too deformed, too troubled to survive, it is simply a miracle to me that I sit here amongst the total chaos of these 3 beautiful young people that I actually grew inside this “diabetic” body of mine.

This morning, whilst sitting for a cuddle my 3 year old Maxwell said “oh Mummy, sorry I hurt you”. “How?” I asked. “I just hurt your diabetes” he said.  Scratching my head I thought about what he meant and realised he had leant on my Insulin Pump in my nightie pocket. “Oh, you leant on my pump?” I asked. “Yes” he said ” I hurt your diabetes”. I told him it was fine and he turned with big eyes and said ” Mummy, you have a hurt in your tummy and the Doctor needs to fix it”. How the hell does he know the pancreas is in the tummy? Or maybe it is because my tummy resembles a car accident victim with all the bruises, pump bumps and spots…..”Oh the Doctor can’t fix Mummy’s diabetes” I explained.

He turned to me again with those big baby blues, hopped off my knee and stood up with finger in the air…”Oh but Mummy, REMEMBER I got a Doctor Kit and I can fix you!”  Running quickly to his Doctor Kit (asking for help as it is a bit hard for a very small Doctor to open his Doctor’s case) he proceeded to try and fix my diabetes, running X-ray machines across my tummy, looking in my eyes and ears and even doing a “blood test” with the toy thermometer as it has a clicky bit he thinks it is a finger pricker.

Jeez…maybe he will be the one to find a cure?

Or maybe he will just be one hell of a caring man.

Either way I love him. Thanks for fixing me Max.

Maxwell and James have a sand hug

People have said I am “impatient”. So what does that mean? That I am not good at waiting? Given the amount of waiting I do, I beg to differ.

While waiting for an application I was trying to edit my Facebook pages with to work today, over and over again, with multiple browsers open on multiple tasks all at once, it got me to thinking about waiting.

Is waiting just the fill in time between what we DO in life? Between where we are and where we want to be or go? Or is waiting the point of it all? Given the amount of waiting I do, should I be seeing the “waiting” as my life? Or perhaps this is my calling? Maybe I was BORN to wait? Given I was a waitress as a teenager and young adult and in fact quite enjoyed waiting on people, maybe this is the case.

Given I live with type 1 diabetes and spend hours and hours of my life waiting for results on blood glucose machines, waiting for my blood glucose to go up when low, go down when high, for my insulin pump to need changing, for doctor’s appointments, in doctor’s rooms, for the complications to set in, to get worse, for my diabetes to be quiet and GIVE ME A BREAK….I am thinking that perhaps, yes, waiting is what life is all about.

So here is my challenge. I am going to see waiting as an opportunity, not a pain in the arse. Instead of feeling rushed, stressed, impatient – each time I have to wait, for whatever it is – I am going to say “Waiting is my life. This is what it is all about. This is not the in between stuff, this is it” and I am going to damn well like it.

Oh, except the waiting for a cure bit – that bit I think I am a little bit over. 33 years is a very long time to wait and I am not sure anyone would stay in line for that long.

Happy waiting.

Black swans skim across the surface

Sun climbs slowly in the sky. Stretches out to test the sea.

Bravely climbs aboard his ship

Lingers lovely on the edge

Sunshine wants to stay here longer. Gives us glory as she leaves

I can handle all around me
Gently rolling in the deep…..

So I gathered the children, packed some food, nappies, baby wipes, water, money, car keys, jackets, strollers and bundled them into the car. Arriving and parking we got everyone out and ready to go. Something I have missed, I was thinking…something to do yet…”Oh check my blood”. Ok will get them out onto the street from the carpark and then check.

Walking along the main street in our lovely little city juggling the stroller and trying to get the blood glucose machine out can be interesting. “Right, got it”….”ohh” nope the light is green. Across we go. Ok, now to check…”Ohh”…nope the 3 year old wants a drink (already). Ok will check when we get across the street.

Do I really need to check? My little diabetic voice in my head says “Yes you do. You are out with the kids, you need to make sure you are not going to go low in the museum. Remember the time you DID and how horrible it was?”

I see all the other families milling around the museum doors and our friends we are meeting run cheerfully up. “I just have to check my blood”. Hang on, yep, all done, thanks to the 5 second testing we now have. With a few blood strips dropped on the floor, leaving my trail all over the world just like Hansel and Gretel, we are off into the Abyss.

Seeing the “please check your backpacks at the door” sign, I think “not likely”, slip it onto the stroller and hope they don’t notice it. No! And we are in. As we look at the somewhat ugly but remarkable creatures I hear a voice and a tap on my shoulder in the darkened room “Excuse me, do you have baby things in that bag?” I turn to see an officious looking woman in a really great uniform fitting in well with the theme of the exhibit. “Oh, I have type 1 diabetes and it has my food in it” I explain. ” I might NEED that”. “Well, ok…but you need a STICKER” she almost yells at me. “These are our RULES and if you get a sticker you can have your MEDICINE in here”. She walks off to get the sticker that says it is ok for us to have the backpack in there with us, I feel slightly embarrassed as people look at me….thinking yet again how I have had to tackle extra things in my day. Thinking it is not medicine. I am not sick. I simply need to have my food with me.

But hey, on the flipside, guess there are some benefits to diabetes – we got to keep our backpack in the museum! And we got an orange sticker – YAY to us!!

Online counselling was not heard of in Australia and the idea of people with diabetes needing support and counselling (other than learning how to prick their finger and use insulin) was rare. So our adventure into the online space offering free counselling and support to people with diabetes was interesting, scary and somewhat mad!

Yet here we are in our 10th year. As we have evolved over the past decade down here in Australia, the DOC (or diabetes online community for those  not in the know) has grown at a very fast rate – almost as fast as the Internet itself.

What I have noticed is that in places like America in particular, there have been many champions who have lead with their voices, their heads and their hearts, such as TuDiabetes http://www.tudiabetes.org  Six Until Me  http://sixuntilme.com/ Diabetes Mine http://www.diabetesmine.com/ and many more. As a result there are a multitude of amazing peer support sites, bloggers and the like in the US and a strong voice across social media in particular.

In Australia, the growth of the voice of people with diabetes in the online space has been somewhat slower, despite the growing recognition of the importance of peer support, a shared voice and mental health support.

What you tend to hear down here in “Oz” is the voice of diabetes health care professionals, pharmaceutical and diabetes device companies, research groups and major “consumer advocacy” organisations. What you hear less is the actual voice of the people who live with and are affected by diabetes each and every day.

Groups have sprung up on places like facebook and more voices are being heard, yet it is not enough.

So our challenge is to get as many Australian voices of people living with or affected by diabetes heard as possible. This challenge starts now and begins with this blog and other forums and chat rooms at Diabetes Counselling Online, facebook, YouTube and as many places as we can place ourselves – most importantly we want people with diabetes and their loved ones to add their voices to the conversations in word, video and pictures.

So many people feel alone with their diabetes. Isolated. Guilty. Scared. When you hear someone elses voice and what they are saying makes sense you feel better. And you feel better knowing that someone else feels better because of what you shared.

Sharing our voices helps.

Take the challenge and let’s hear your voice!

Over the years I have learnt that both handle each other very well indeed.

In fact so well that my now 3 year old will hold it, as if it is part of my body. Talk to it and tell it to “move” when he is snuggling into my chest and “Pumpy” is attached to my top. “Ask me if he can have a Pump too and copy me when I change the cannula. “Ask (often) for a “hypo” and in fact demand he has a “hypo” when I am as he thinks lollies are called hypos (off the pump topic but so cute had to add it in) and take no notice whatsoever of the Pump as to him it is just part of me.

I am in awe of my kids, all of them. And I am also in awe of Pumpy – Pumpy, I salute you.

Me and Max and Pumpy (I now have a pink one!)

Common resolutions include things like, “get healthier”, “lose weight”, “eat better”, “give up or cut down on alcohol”. Also popular are resolutions dealing with better money management / debt reduction. One problem with these is that they are often not specific enough, have no time frame, don’t relate to our values and we don’t really think them through.

The following shows how many of these resolutions are maintained as time goes on:
- past the first week: 75%
- past 2 weeks: 71%
- after one month: 64%
- after 6 months: 46%

When it comes to living with diabetes I am sure we make many “resolutions” “promises” and “plans” for how to better manage. The thing is, life is not lived in a bubble or the glow of a New Year’s Party. It is lived out here in the real world. Living life with diabetes needs to be about our life first and diabetes second, so that it can take its rightful place without taking over, or being neglected.

Sticking with healthy changes for our body, mind and wellbeing takes a lot of elements. One of the biggest is having support, being gentle on yourself and not throwing in the towel should you have a moment, a day, or a week, off track. You are the one in control of your life and you can come back to what is important to you, whenever you need or want.

Mindfulness can help as it enables us to be in tune with our thoughts and realise we are not ruled by these often unconscious moments, but can tune into them, stop them, change them and choose to ignore them. It also helps us to savour every moment of life, happy, unhappy, joyful, painful or other – and ensure we don’t waste a minute – which is in fact a great resolution.