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I caught up with Grumps a couple of weeks ago in London and bored/annoyed him to death with requests for him to write for me again. Success! Off you go, Grumps… 

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A couple of weeks ago I was lucky. Lucky that my great friend Renza was in the UK. Lucky that we had time to catch-up. Lucky that JDRF UK invited us both to talk with their staff about #LanguageMatters & #TalkAboutComplications.

Smiley / Grumpy

One of the questions during the session was around how can we get the language matters message out to healthcare professional?

Renza gave her view. I can guarantee that it was brilliant and articulate. But if I’m totally honest, (which I can be now, with her back on the other side of the world again), I wasn’t totally listening.

I’m shit at multi-tasking you see. In fact, I struggle with single tasking most days.

You see I was thinking (another thing I struggle with….)

It’s easy (relatively) to get the message out to my diabetes team:

  • Discussions
  • Position statements.
  • Frowns and a raised eyebrow at the required time.

But what about my extended team?….. How would I do this?

What Would Grumpy Do?

Basically, I did what I often do, (which pisses people off).

I answered with a question.

  • ‘Who is in my HCP team?’
  • ‘How many HCPs are in it?
  • ‘Do I see the same HCP every time?’

Ok. That’s three questions. (I’m also shit at maths.)

I’d kind of inadvertently got a head start on this one because at the beginning of my foot ulcer treatment (fucking ages ago), I considered how joined up my care would be.

Don’t get me wrong. Each team is fantastic and the care is brilliant. It’s not joined up, though.

My brain works, (when it actually works), in pictures. So, I mapped this out:

Grumps’ brain drew this.

There are a lot of HCPs involved here, in several locations and different fields of expertise. The only person present at every single appointment and meeting is me.

So, I am the one best placed to ensure that my care is joined up. In which case, I am best placed to ensure that I am talked to in a consistent way, using the language that I am personally comfortable with.

I’m not saying that its easy. I am saying that it’s my responsibility to try.

The best manager I ever had used to tell me: ‘What you permit, you promote’. If you let people treat you in a way that you do not like, it validates it to them.

Live Long and Bolus!

Grumps.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

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Look who’s taken over Diabetogenic again! Grumps is back to share some wisdom about how he deals with hypos.

We know that when it comes to diabetes, there is the advice we’re given by HCPs. And then there is real life. I wrote about my ’reality versus what I was told’ when it comes to lows a few years ago, and today, Grumps is sharing his wisdom in the latest instalment of #WWGD.

________________________________________

About ninety mins after lunch today my BG started to drop.

It was a nice slow decline so having checked my insulin on board I decided to do bugger all about it and see what happened.

It kept on its slow decent until at about 6.0 mmol/l the carbs on board stalled and it decided to do an impression of a flying hippo and dropped like a stone.

What’s the advice for treating hypos?….

  • 15g carbs
  • Wait 15 minutes
  • BGL check
  • If “blah, blah, blah”……

Load of bollocks!

Hypo hunger kicks in.

So……

  • 4 Twix bars
  • 2 Twirl bars
  • A pre-emptive bolus and…..
  • Falling asleep on the toilet and waking myself snoring….

I land at 8.6mmol/l just in time for dinner!

Live Long and Bolus

Grumps

Want more from The Grumpy Pumper? Of course you do! Check out his blog here. And follow him on Twitter here

Grumps in Vienna

 

‘Grumps? Grumps? When are you writing for me?’

Last year, The Grumpy Pumper wrote a couple of posts for me in what was going to be semi-regular series called What Would Grumpy Do? Actually, the idea that it was going to be a semi-regular thing was news to Grumps, and because he doesn’t like to be told what to do, it’s been over a year between posts. 

Earlier in the month we were in Abu Dhabi at #IDF2017 together, and every second thing I said to him was a variation of ‘When are you writing for me again? Grumps? Grumps? Grumps? Hey, write something. Now! Grumps?’ As it turns out, four days of me asking the same thing yields results. Who knew?

So here’s Grumps’ recent diabetes complications story. and his efforts to get people talking about complications to reduce stigma.

Off you go, Sir Grump-a-lot…

____________________________________________________

‘I’m afraid you have a diabetic complication Mr Pumper.’

(I’ve had the language matters talk, don’t panic)

How would you feel if you heard this? What would you do?

Well, at that point in time, I asked myself: What Would Grumpy Do?

To set the scene…

I had a bloody great hole in my foot.

I was at the podiatrist.

So, let’s face it, I did not fall off the chair in shock.

The conversation went something like this:

Grumps: What kind of complication? You can tell me straight. It’s my foot, right?

(Cue eye rolling by podiatrist. I don’t blame her. Dealing with me is a challenge at the best of times.)

Podiatrist: Yes. It’s an ulcer.

Grumps: Caused by the blister I told you about that burst, healed over but must have had some crap in the wound?

Podiatrist: Yes, that’s it.

Grumps: So it’s caused by my diabetes then?

Podiatrist: Oh no, not the blister, but your neuropathy means it will take longer to heal.

Grumps: So that big hole in my foot isn’t a complication of my diabetes; it’s complicated by my diabetes?

Podiatrist: Well. I guess so…

Me being me, I don’t care what it’s called, nor how I’m told, because if I’m totally honest it doesn’t bother me. Not much does. I’ll take whatever comes, deal with it and move on.

But I wanted to make a point. Things can be viewed very differently depending on who you are and how you feel about things. And how you feel about things can depend on how things are worded – that can massively influence things.

Anyway, to cut a short story long, a precautionary X-ray and a consultant later it was confirmed that there was no bone infection, which was good. It also showed that about a year ago I had broken two bones at the top of my foot and also smashed the joint in one of my toes – fuck knows how. (I remember a lot of swelling in the foot and bruising.)

Instead of healing, the bone had degenerated and gone ‘chalky’. Over time that hardened and went back to solid bone (as I understand it). So the toe joint isn’t a joint now, and the foot is slightly warped (just like my sense of humour). The Charcot (the chalky thing) is no longer active, but I am at risk of it happening again if I get another trauma to the foot.

All of which is good!

Why the hell would I think any of that was good?

The hole in my foot uncovered all the other stuff, so to be honest, I’m glad I got it. If I hadn’t, I would still not know. The Charcot isn’t active so there is nothing that needs to be fixed. I now know that if I get similar symptoms, or become aware of any trauma, I need to get it looked at ASAP. And I know the route to make sure that happens.

So, all good in my book.

I went home and did what any self-respecting Grumps would do: I waited until it was dinner time in the UK and then posted a gross picture of my foot for all to see. I described the issue and raised the subject of my complications.

This sparked a very good online discussion about compilations with other PWD talking about theirs and others seeing that they are not the only one with them. And there is no shame in having them. Sharing experiences and taking comfort from others; for me, that’s what peer support is about.

We are all in the same boat. It’s just that the boat is full of holes. If we try to bail out the incoming water on our own, at some point we will drown. It we help each other; we can keep our heads above the water.

I am not ashamed about my complications. I never will be!

I will Grumpily tell everyone that wants to listen, and post disgusting pics that pop up on your social media feeds just as you are about to tuck into your favourite meal.

I’m not sorry about this!

Complications are a hazard of what we have.

Not a failing of what we do.

#TalkAboutComplications

Live Long and Bolus

Grumps

Grumps’ snazzy new footwear.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

I get to meet some pretty awesome people with diabetes around the globe. At EASD I caught up with Cathy Van de Moortele who has lived with diabetes for fifteen years. She lives in Belgium and, according to her Instagram feed, spends a lot of time baking and cooking. Her photos of her culinary creations look straight out of a cookbook…She really should write one!

Cathy and I were messaging last week and she told me about an awful experience she had when she was in hospital recently. While she wasn’t the target of the unpleasantness, she took it upon herself to stand up to the hospital staff, in the hope that other people would not need to go through the same thing. She has kindly written it out for me to share here. Thanks, Cathy!

______________

‘Good day sir. Unfortunately we were not able to save your toes. There’s no need to worry though. We’ll bring you back into surgery tomorrow and we’ll amputate your foot. It won’t bother you much. We’ll put some sort of prosthetic in your shoe and you’ll barely notice…’

I’m shocked. Still waking up from my own surgery, I’m in the recovery room. Between myself and my neighbour, there’s no more than a curtain on a rail separating us. I feel his pain and anxiety. He is just waking up from a surgery that couldn’t save his toes. This man, who is facing surgery again, leaving him without his foot. How is he gonna get through this day? How will he have to go on?

The nurse besides my bed, is prepping me to go back to my room. I tell him I’m shocked. He doesn’t understand. I ask him if he didn’t hear the conversation? His reaction makes me burst into tears.

‘Oh well, it’s probably one of those type 2 diabetics, who could not care less about taking care of himself.’

I’m angry, disappointed, sad and confounded. I ask him if he knows this person. Does he know his background? Did this man get the education he deserves and does he have a doctor who has the best interest in his patient? Is he being provided with the right medication? Did he have bad luck? Does he, as a nurse, have any idea how hard diabetes is?

The nurse can tell I’m angry. He takes me upstairs in silence. My eyes are wet with tears and I can only feel for this man and for anyone who is facing prejudice day in day out. I’m afraid to face him when we pass his bed. All I can see is the white sheet over his feet. Over his foot, without toes. Over his foot, that will no longer be there tomorrow. I want to wish him all the best, but no words can express how I feel.

What am I supposed to do about this? Not care? Where did respect go? How is this even possible? Why do we accept this as normal? Have we become immune for other people’s misery?

I file a complaint against the policy of this hospital. A meeting is scheduled. They don’t understand how I feel about the lack of respect for this patient. They tell me to shake if off. Am I even sure this patient overheard the conversation? Well, I heard it… it was disrespectful and totally unacceptable.

Medical staff need to get the opportunity to vent, I totally agree. They have a hard job and they face misery and pain on a daily basis. They take care of their patients and do whatever is in their power to assist when needed. They need a way to vent in order to go home and relax. I get that. This was not the right place. It was wrong and it still is wrong. This is NOT OKAY!

He’s back! The Grumpy Pumper has returned to Diabetogenic to share some of his wisdom and wit. If you’ve ever wondered what a Grumpy Xmas looks like, here you go!

pie-copy

It’s almost bloody Christmas again.

A time for joy and happiness.

I hate it!

I remember Christmases before I was diagnosed:

Turkey dinner

Beer

Mince pies

Beer

Cake

Beer

Whiskey

Chocolate

Whiskey

Whiskey…

But now I have Type1 Diabetes!

So how does Christmas look now?

Turkey dinner

Beer

Mince pies

Beer

Cake

Beer

Whiskey

Chocolate

Whiskey

Whiskey…

I’m not going to let some condition that I just happen to have ruin the bits of Christmas that I actually like.

A few more BG checks to keep an eye on progress.

A bit more insulin when needed.

Then repeat for New Year’s Eve.

So whether you will be waiting for Big Ben to give you a bong, or your balls to drop in Times Square, enjoy Christmas. Here’s to 2017. And bollocks to ‘betes!

Live long and bolus,

Grumps

Festive as ever.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

Today, The Grumpy Pumper has taken over Diabetogenic. That sounds like it was a hostile move, however, the truth is it’s just to shut me up, because every time I speak to Grumps, I tell him he needs to get back to blogging. He may not know this yet, but today’s post is the first of what is going to be a regular (maybe semi-regular – no pressure!) feature, where Grumps is going to share his own brand of diabetes wisdom. It will be called #WWGD. 

For a most authentic experience, it’s best to read his words with a frowny, grumbly expression while drinking beer. Sprinkle generously with expletives. Over to you, Sir Grump-A-Lot…

3b30e981e3469a95cdd0bfeb4d57477bI’ve not blogged for almost six months (stop cheering).

Why not? Basically, I have sod all to blog about!…

You see, I have a special type of diabetes: Type B…Boring Diabetes

I’m lucky to have it. Nothing much changes. No dramas. Just the same most days.

Although, my life has changed recently: new job (well 4 month contract) away from home (140 miles away).

As a result, I’m staying in hotels (crap ones) 4 nights a week.

I’ve been doing it for 4 weeks now, and last night I realised that no one there knows I have T1D.

I don’t share my CGM data with anyone; I hardly ever wear it anyway. I don’t check in with the family so they know if I’m ok. (I never did before DX; I’ve never have done since DX if I’m away.) They have never been involved in my management in any way (my choice).

So…am I stupid (hands down people), confident, or just lucky? I’m lucky I have full hypo awareness still, for sure.

Having asked myself ‘What do you want to change about this all’, I replied to myself – (yes, I know that’s not normal. I like that it’s not normal) – ‘Nothing’.

Okay, I actually replied ‘Fuck all’ but that’s too rude to type…

I don’t want or feel the need to change anything. It’s how I do things. It works for me and my family.

If and when my diabetes gets to be less lazy I may need to change things, but not this day.

So if you ever find yourself wondering or worrying how to handle things, then ask yourself: ‘What Would Grumpy Do?’ And then do the complete opposite. Grumps is a bit of a knob and doesn’t take life very seriously.

Live long and bolus,

Grumps

Grumps low-carbing in Munich.

Grumps low-carbing in Munich.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

Over the weekend, my Facebook friend, Brad Slaight, shared a story that got me thinking. He summed up perfectly the power of connections and the value of speaking with others sharing our experiences.

I’ve not met Brad. We know each other only through social media. He is a funny guy – in fact pretty much all of his posts make me laugh out loud. You can read all about him, and the ‘Diabetes Hero Squad’ here.

I have read this piece several times and each time I am struck by just how the family in is story would have walked away from their encounter with Brad feeling relief, support, less isolated and less alone. It is how I feel whenever I connect with others living with diabetes.

Brad has kindly given me permission to publish his post here. Thanks, Brad!

 

I’m always interested in meeting another person with diabetes and after the secret handshake I enjoy listening to their story, their struggles, and their methods of control. Even with strangers it is always an immediate bonding because we are conjoined by a common life threatening, daily maintaining condition that cuts through the awkward veil of trust.

But tonight it was different. I went to a party at a beautiful home in the Pacific Palisades. An upscale community near the ocean with homes that in the Midwest would be expensive, but here in Los Angeles you have to be in the top 1% to own. This party was catered, valeted, and lavish.

I never feel out of place at these kinds of things even though my socio-economic status is not quite on the same level with the majority of the other guests. But since I am in the entertainment business I usually fit right in and can charm my way past any portfolio flaws. Money and power does not always mean personality. I’m pretty gregarious and make friends easily and tonight was no different. Flitting around from one group to another I came upon a stunning couple who looked like they just stepped from the pages of Forbes Magazine. Young Republicans I thought. Well groomed. Fashionable. Rich.
I planned on walking right past them because I saw nothing in common. And then, the woman grabbed my arm.

You’re Brad, right?” She asked. A wave of paranoia came over me. What had I done? How did she know me? What did she want? I made some lame joke about not being Brad Pitt and she forced a laugh but I could see some unexpected pain in her eyes.

I don’t mean to be forward,” she continued. (Forward? Who fucking talks like that, I thought to myself) “Shannon told me you have diabetes.”

Oh my God, I’ve been outed. As if I really care. But why was she asking me this? I would have preferred that she said something like, “You’re a comedian, right?” or “I recognize you from TV” or anything else that would be complimentary. I don’t mind people knowing I have diabetes, but it’s not really what I want to be known for?

The next thing that happened completely took me by surprise. She told me that their 7 year old son was diagnosed with Type 1 diabetes two weeks ago. This was the first time they had been out of the house at night since then. And they had to force themselves to come to the party even though they wanted to stay home and hover. Immediately they were one of us. Diabetes – the great unifier! They were in the club. I understood their pain and at that moment I also felt it because it hit me in the gut. Seven? Fuck. I was fortunate enough to get it when I was already an adult. Seven!

We talked for the next hour and a half. The rest of the party became an oblivious blur. They listened to me as if I were Yoda as I told them my story and stories of others who I have known from the D.O.C. They hungered for knowledge about diabetes. Where do they go? What do they do? Why did it happen to their precious boy? When will it be cured? How will he deal with this horrible disease? The same questions we all have had, and many that we still do.

I told them about the usual links and sites they should explore. The JDRF, the ADA, TuDiabetes, and others. But what they wanted to hear most was how I’ve survived for 30 years with diabetes. What do I do? How do I manage? Have I gotten any of the terrible complications they’ve been told about? And it was then that I realized how important all of the diabetes online community has been for me. How important it is to not feel so alone. So isolated. And how terrifying this disease is for those who are newly diagnosed and the people who love them, because it changes their life as well. I told them what I could but made sure to remind them that, even though we all share the same disease, we are all different and finding a good endo is key.

Most of all I told them how important it is that they were scared because that means their boy has great parents who will make sure he gets the best care possible. The fear will lead to knowledge, which will lead to the best kind of advocacy of all. And I told them that they need to seek out other parents who have CWD because they too need to understand they do not have to face this all by themselves.

Next week I am going to have dinner at their house and meet their little boy. I won’t tell him about all the technical stuff. In time, he will learn all that for himself, because he will have to. No, what I will talk to him about is that there are many of us. He is not alone. And I will give him an autographed picture of The Diabetes Hero Squad. I will tell him that he is a diabetes superhero. And I will make sure I don’t cry until after I leave.

I went to a party. I found out about another one of us. He’s seven.

We need to find a cure!

 

Today, I am so pleased to have Jane Reid guest blog for me. I’ve never met Jane in real life (I hope to one day!), but we are friends on Facebook and seem to have very similar interests. We share a lot of posts about books, libraries, grammar and punctuation. Jane often posts really thoughtful and honest comments to my blog posts and I am always so interested to hear her opinion and experiences. Thanks for sharing today, Jane.

I have lived with T1 for 50 years – well, almost, but who’s counting?

It seems like a long time, but it has whizzed by. From diagnosis, (diabetic ketoacidosis and coma), to now, (pump, some hypo unawareness and some complications), I have lived it all with the help of my parents, my friends, my HCPs, and most of all, my husband who has put up with nearly 43 years of type 1. He told me yesterday that any sort of illness or set back that affects one of us is OUR problem. That is true love.

For the first few years I lived through what I call the ‘dark ages’. Glass syringes, horrible, large needles that went blunt quickly and testing (if you can call it that) with tablets dropped into a mixture of urine and water. If the result was blue, you were probably hypo; if the result was orange-brown you were high. My first specialist-physician (did they even have endos in 1965?) did me the greatest favour he could have. He told me that I would be the person who knew most about my diabetes, and he was correct. Thank you, Tom Robertson!

Jane

Jane

When I look back, I now realise that I had gastroparesis from quite early on, although it was only diagnosed ten years ago. Maybe I just didn’t want to know at that time, and I certainly never told any HCPs. I could probably have saved myself a lot of grief if I had.

The complication I really feared was retinopathy. I am a voracious reader, and I had heard gruesome tales of people going blind. Well, it wasn’t as bad as that, and it took over twenty years to develop. The treatment was worse than the fear, and the waiting around to see the ophthalmologist was worse than the treatment. I was treated by an ophthalmologist whom I can only describe as arrogant, and patronising. He did, however, save the majority of my sight, although I have almost no peripheral vision and can no longer drive.

I have had no treatment for over twenty years, so I guess he knew what he was doing. Losing my driving licence was the worst thing for me, although it was not until ten years ago. It has, to a certain extent, taken away my autonomy and independence, although every time I get into the car I know why I no longer drive. Believe me; everyone else on the road is safer because I’m not behind the wheel!

My latest complication is diabetic nephropathy (CKD). I was, to put it mildly, surprised and depressed when I found out. Luckily, the specialist I was sent to in the ACT, put me at ease, told me all about it, and arranged for a kidney biopsy. That showed that the disease was not nearly as bad as first thought, and was only at the very first stage. His comment to me was ‘I’m the same age as you, and I’ll look after you for the next seven years, and then I’ll hand you onto someone else when I retire’. That was reassuring!

I’d prefer not to have type 1 diabetes, but I can live with it. I’ve found out that I can live with complications; sure, I’d prefer not to, but they just become part of life. The worry and the fear are worse than the reality. I just do the best I can. None of us can do more than that.

Jane Reid is a proud member of the Newcastle Knights Rugby League Club and early next year will be eligible to receive a Kellion Medal for living with type 1 diabetes for 50 years – congratulations Jane!

Last month, my mate Mike Hoskins asked me to write something for Diabetes Mine. So I did.

It’s called A Word From Down Under, and I’m a little annoyed I didn’t add some commentary about throwing shrimps on the barbie, riding my ‘roo to work, or eating vegemite sangas. Missed opportunity.

Here it is!

diabetes mine

This week, the new school year starts for many kids and teens in Australia. I proudly watched our big nine-year-old walk into her new classroom – seemingly confident and secure. As parents, we know that with each passing year, we have to hand over a little responsibility as our kids grow up. We need to foster their independence and celebrate it, even at times when we want to bundle them up and try to protect them from the big bad world.

Today, my dear friend Catherine Forbes, writes about how her family is navigating independence with their fifteen year-old daughter who just happens to have type 1 diabetes. I love Cath’s attitude and approach because raising her beautiful girl isn’t about diabetes. It’s about helping her daughter be the best person she can be. Diabetes or not, I think this is relevant to all of us. Thanks for writing, Cath.

One of the most amazing things about watching your child grow up is seeing them take on their own responsibilities and realising that, even without you, they will thrive.  It’s no different when your child has type 1 diabetes.

For the past ten years, it’s been my job to look after my daughter; to keep her safe; to keep her alive. I’ve been the one testing, injecting, doing site changes, making adjustments and going to appointments.  I’ve been the one checking the carb count in every piece of food that she eats.  I’ve been the one nagging.  I’ve been her carer – and it’s been the most important job that I have ever done.  Sometimes, it’s extremely difficult to let go of that.  It becomes our identifier.  It’s who we are.

Cath

Cath and her daughter

But, I’m here to tell you that ‘letting go’ is so worth it, so rewarding and, ultimately, the best possible thing that you can do for your child.

Now, I’m not talking about handing everything over to them and walking away.  That would be a disaster.  What I’m talking about is slowly letting go of the control that we have, allowing them to make their own decisions and their own mistakes.  Allowing them to learn how to look after themselves safely for the rest of their lives.

Let’s face it; as much as we joke about them having to build a granny flat for us when they move out, the reality is that they are likely to be living on their own at some stage.  Possibly living with friends or a partner.  And certainly – not with us.  We want them to be confident and competent in their own care.  We want them to know what to do in any given situation.  And we want them to live happy lives.

Twelve months ago, we began consciously working on this transition time with our daughter.  She was 14 years old and had just been selected to tour the United Kingdom and France with her school netball team.  Even though she would have teachers with her for the tour, we wanted her to be confident enough to look after herself while she was away.  I made sure that she knew that I was there for her if she needed me and, nervously, handed over the responsibility for testing, carb counting and bolusing her insulin.  I did not ask.  I did not nag.  I cut back on the night time testing.

I admit to you all that, as we approached her quarterly visit to Diabetes Clinic, I feared that we would see the worst HbA1c ever.   It was a tough lesson – but also one of the proudest moments of my life – when she presented her best result EVER.  She had taken control.  She had stepped up.  She had set her own alarms to test during the night or she had asked me to check on her.  She had worn her Dexcom CGM and taken great interest in the effect of different foods and activity on her blood glucose levels.  Essentially, she was doing this on her own.

Stonehenge

Cath’s daughter at Stonehenge

When September rolled around and we waved her and her school mates goodbye, we knew that she was going to be just fine.  And, more importantly, SHE knew that she was going to be just fine.  For almost three weeks, I did not know her levels – not one of them.  I didn’t know what she ate or what activity she was dealing with.  And, when we spoke via Skype, diabetes was not mentioned once.  She told me about her adventures and the people that she had met.  It was magical.  A huge turning point.

Now, she is still driving her own diabetes management.  Several weeks ago, she told me that she wanted a pump holiday.  She asked me for guidance and I showed her what needed to be done.  In the past, her “holidays” have barely lasted a week.  Now, with her in the driver’s seat, she is entering week four on multiple daily injections and she is doing great.  I don’t know what all her levels have been but she is happy with them and that’s all that matters.  I see her testing.  I see her injecting.  I know that she is going to be just fine.

I know some remarkable and inspirational young people who just happen to live with diabetes – and I know that my daughter will be in good company in this community.  She too will be an amazing young person – taking life by the horns and doing whatever she chooses.  Diabetes is just a tiny part of the incredible woman that she is.

Catherine Forbes is a mother, advocate, volunteer and peer support mentor. You can follow her on Twitter here.

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