Open Letter to Minister Harris. Minister for Health, Ireland 🇮🇪 


Dear Minister Harris

 

You were elected into government by the people, “for the people” yes I said for the people.

 

You were elected on the assumption and conditions that you would be working on our behalf for what we needed, so please bear that in mind while I continue.

 

During your time in office hospital waiting lists for surgery have lengthened, out patient appointment waiting times have lengthened, hospital A&E departments have become intolerable, the amount of patients on hospital trollies in A&E departments have grown to some of the highest numbers I can remember.

 

In fact you have, in your time in office managed to worsen our healthcare system and put hospital staff under such pressure that they simply cannot cope.

 

We’ve had the cervical smear scandal that has effected my family directly. 

 

We’ve had the breast check scandal.

 

We’ve had HSE care home scandals.

 

Iv read many an article about children with disabilities unable to get wheelchairs from the HSE and these young children are then unable to socialize with others.

 

Indeed my own daughter had to fight hard for most of the year to get a €50 part for HSE equipment for her daughter ( my grand daughter ) in order that her spine and hips would develop correctly after she was born with a disability.

 

We’ve had a woman walk the length of Ireland to beg you for medical cannabis to stop her child having life threatening seizures.

 

During times when the people have tried to communicate with you about these issues, “you have failed miserably” by neglecting to listen intently and act promptly to Their needs and concerns. 

 

Indeed I’m sure you will claim praise for the success of the abortion referendum outcome but let me tell you, the outcome would have been the same with or without you, much like the same sex marriage referendum, ireland was more than ready to prove that we were no longer an Ireland of followers, we have become an Ireland of leaders. These days the people of Ireland actually speak out.

 

As minister Varadkar said to the Pope on his recent visit, Ireland today is a very different Ireland than it used to be.

 

Now Minister Harris I am a Diabetes Advocate and I have Type 1 Diabetes.

 

I am struggling daily to understand why you would actively engage in age discrimination against myself and my fellow adult colleagues with type 1 diabetes by eliminating us from reimbursement of the FreeStyle Libre, which would improve our diabetes management.

 

We even amassed over 19,000 signatures on a petition calling for you to include adults in the Libre reimbursement and stop age discrimination. 

 

That was in May 2018 when we went to Leinster House to present our petition to you but you were nowhere to be seen.

 

You couldn’t even give us a few moments. Yet you are supposed to be working for us, the people. Many other ministers had the manors to meet us and talk to us that day, they also Signed the petition that Frank O Rourke and Mary Butler received from us to present to you on our behalf.

 

To this day you have not taken the time to receive it from them. That is the level of NO respect you have shown us.

 

You see, the fact is that better diabetes management aided by the technology available to do this ( like the Libre ) helps prevent and avoid diabetes complications that in the future would cost this country millions of € to treat in hospitals all over the country.

 

In Kildare for example, footcare for anyone, even if they have diabetes and foot problems will only get an appointment from the HSE if they are over 64 years of age. 

 

The good news here would be that by 64 we may not need foot care.

 

The bad news is that the foot or feet could be amputated by that stage. 

 

We would no longer need footcare however we will need, a lengthy stay in hospital, rehabilitation, mobility aids, home adjustments, and eventually a prosthesis or two, all at a huge cost to the HSE for each patient, But the good news is you’l have saved a little money by not providing foot care.

 

For those of sound mind this makes no sense what so ever. An intelligent person would know prevention of diabetic complications would cost less than treating them.

 

Minister Harris I have to tell you that if I had a seat in government I would table a vote of no confidence in you at the earliest convenience.

 

You need to listen to your people. You are supposed to be Minister for Health allowing us to stay healthy, not the Minister for ill-health.

 

You are only where you are because of people who voted for you. You work for us but I think you may have forgotten this.

 

Yours Sincerely,

Davina Lyon

Co-Founder of Diabetes T One & A Diabetes Life

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.
Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.
There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Davina Lyon

 Co-Founder of Diabetes T One & A Diabetes Life

Does injection technique make a difference to your diabetes day to day management ?
Do you remember your very first instruction about injecting insulin ? did it involve an orange ?
first of all lets take the size of you needle tip.
False !!!!
I clearly remember being told that the size of the needle prescribed to us for injecting insulin depended on our body weight or BMI. The more pleasently plump we were the bigger the needle tip we needed.
you see this is the problem i have with what we are told in some clinics and GP’s because when we are told something like this we tend to believe it …….
sure it makes logical sense.
Fact !!!!

Skin thickness is on average 2mm to 2.5mm in most adults. The average skin thickness of 2mm is constant across all injection sites regardless of a patients Age, Gender, Body Mass Index / BMI or Ethnicity.

The probability of an acidental intra muscular injection increases with very mm in needle length.

so there you have it, no matter how cute and cuddly you are your skin thinckness remains the same.

Fact !!!

Fat thickness varies from one person to another, fat thickness in adolescents and children is less than adults.

The bulseye here is to actually get the fat layer when your injecting insulin and not the muscle under that.

I remember when i used to inject Lantus, the sting and burn sensation that followed the injection at night before bed was not only uncomfortable but it often brought tears to my eyes.

This happened every night, but back in those days i was using a 5mm or 6mm needle tip and i had no idea that i could have this sensation eliminated. 

Lantus has that effect they said.

until one day i hosted and attended an injection technique talk. The professional giving the talk gave me some sample 4mm needle tips to try and o my god what a difference.

The 4mm needle tip literally sliped comfortable through my 2mm of skin and then landed in my fat layer, nowhere near the muscle – no sting and burn. That night was a lightbulb moment for me and no longer did i have to phych myself up for my lantus at night.

FYI !!!!!

Please take a moment to focus on the picture below. ( before and after )

pen needles are very fine and they are lubricated for ease of entry……. but only once !

When you re use your pen needle, the needle tip becomes bent and blunt, the lubricant is gone off it after its first use.

please think about that for a moment, this means every use the needle tip gets after its first use is causing damage to the injection site used, OK that tiny weeny spot might not make a differnece right now but over time if this is a regular practice we engage in we are doing damage that will, beyond a doubt cause complications of some kind in the future.


*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Davina Lyon

 Co-Founder of Diabetes T One & A Diabetes Life

We all develop some bad habits, we have our favorite or handy injection sites and we tend to stick with them. Sometimes it depends on what we are wearing or where we are. Sure what’s the harm with a little Lipo anyway I hear you say ….. well here’s the info on Lipohypertrophy

Lipohypertrophy, referred to as lipo for short, is a thickened area of tissue that can grow and develop over time in the subcutaneous fat layer where repeated injections of insulin are given.

What’s the issue?

Lipos can be unsightly but more often than not they go unnoticed.

The main concern is that lipos cause insulin to be absorbed unpredictably.  This can result in poor day-to-day control, higher blood glucose levels and the needle for more insulin.  It can also lead to hypoglycaemic episodes (hypos).

Finding a lipo can be a concern, but don’t worry.  Simple changes to your injection technique will help, and if you can avoid injecting into the area, many lipos may reduce in size or disappear over time, but you should always seek advice from your nurse or doctor before using these sites again.

Did you know? Shorter pen needle will allow you to rotate your injection sites more widely and even move to different injection sites with less chance of an intrmuscular injection which can sometimes lead to hypos.

Step 1 – PreventRotate your injection sites, use injection zones, never reuse needles

Lipos generally form when you inject into the same small area.  To minimise the risk of lipos developing you need to rotate your injection sites.

This can be done by dividing your injection sites into zones.  By using one zone at a time and moving around within that zone you can avoid reinjection into one site.

This is how you do it:

  • Divide the abdomen injection area into 4 zones
  • Divide each thigh and buttock injection area into four zones (two each side)
  • If using the arm* treat as one zone on each area
  • Number the zones using the illustrations in this guide – you will systematically move from zone to zone in sequence
  • Begin in the first zone – imagine a clock face over each zone and start at 12 o’clock for your first injection
  • For each new injection move around the clock face
  • Start a new zone each week i.e. every Monday

Important

Each new injection must be at least 1 cm away from the previous one.

By following this technique (even if you only use the abdomen and thigh areas), each individual injection insertion point will only be used once every eight weeks.  This will help reduce the risk of lipo development.


Step 2 – DetectIt is important to make detection and identification of lipo an important part of your injection routine.

If you find any lumps, bumps or swellings in your injection sites, report them to your nuse or doctor immediately.

These steps will help you to detect lipos:


  • Remove any restrictive clothing from over or near the areas where you inject
  • Stand in front of a full length mirror
  • With your finger and thumb gently lift skin and fat tissue folds, and squeeze together.  Repeat this over the entire injection area
  • If the tissue is healthy your finger and thumb will easily squash the soft fat tissue with little or no resistance
  • If lipos are present you will feel a ‘rubbery’ like tissue resistance between your finger and thumb
  • Lipos vary in size, from as small as a pea to larger than a tennis ball
  • Repeat this skin fold check on all of your injection site areas regularly

Your nurse or doctor will teach you how and when to check for lipos.  Some nurses have a lipo detection teaching model and educational materials which can help with self-checking.

The use of a lubricant like a body lotion or any skin oil will help your fingers detect any abnormality in the fatty tissue.


Step 3 – ProtectIf you find you have lipohypertrophy do not be concerned, however, it is very important to speak with your nurse or doctor before making any changes to your injection technique or insulin dose.

They may want to examine your injection sites, and if they confirm you have a lipo, you will need to stop injecting into the site for a period of time.  They will also advise you on any changes to your injection technique, insulin dose and how best to switch to a new injection site.

  • Often, your dose of insulin will be reduced.  Your nurse or doctor will advise you how to do this
  • You will need to frequently check your blood glucose levels when changing sites and adjust your insulin dose accordingly
  • Fat layer thickness is variable within the same injection site.  Therefore, when moving to a new injection zone this can lead to a risk of injecting insulin too deep into the muscle layer which can lead to hypos – you may benefit from shorter needles without the need for a lifted skinfold
  • You should not inject into a lipo area again, unless advised it’s safe to do so by your nurse or doctor

Don’t Worry!

Now you know all about lipohypertrophy – you can take all the necessary steps to prevent it and manage it!

Did you know: reusing needles can make injections more uncomfortable and painful.  Needles are designed to be used once only and may become blocked or damaged if used many times.  Reuse of needles has also been implicated in development of lipos.  So make sure that you use a brand new needle each time.

All of the above information is from BD can be found on the BD website

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Davina Lyon

 Co-Founder of Diabetes T One & A Diabetes Life

Injection technique and the rights and wrongs of injecting insulin can be something many of us don’t hear much about in clinic, so over the coming week or so i am going to give you as much information as i have about this.

The information and  knowledge is coming directly from BD Diabetes Care so it is 100% correct and reliable If there are any of our readers who would like to talk further about your lack of injection technique knowledge just email us on td1ireland@gmail.com and i will do my best to put you in touch with the correct person to talk to.                                                                                                                 

For the moment here is a brief summary of how our interactive workshop went and what it was about.

About our Interactive workshop @ BD 

We ( Liz, John, Mysef – Davina, Mary and Anne ) were required to sit as a panel of experienced Diabetic Patients form 2pm-4.30pm at BD Diabetes Care in Dublin. The aim being to better understand what it is like to live with diabetes and use insulin. The audience, of approximately 30 attendees, will be from the Diabetes Care UK, Ireland Sales & Global R&D Teams.

The format was blocks of questions lasting 30 minutes, with scientific evidence presented as the session progresses lasting 10minutes.

And there you have it, all we had to do was tell the truth, the whole truth and nothing but the truth, and they had the right bunch to do just that.

 

Here is a small sample of the questions we were are asked and my answers to them.

  • In clinic what is expected and what is accepted?
  • In Hindsight what do i wish is knew more about and what would you tell yourself to do better?
  • Needle Reuse is greater in Ireland than UK and in the UK greater than USA, why do you think that is? Has your HCP every mentioned it and why do you think this is?
  • What response do you get when you say to a HCP….”I read on the internet that I should do this….”

Each of these and other questions were answered openly and honestly, but i am inviting you to do the same in the comments below.

In Clinic what is expected and what is accepted.

I suspect this is different from clinic to clinic and from individual to individual, but that in itself is wrong seeing as we leave clinic and go straight to our facebook support groups and share whats just happened. At that moment we realise everyone has a different experience, so im just going to talk about my own here.

What is expected

A fairly decent HBA1C is a good place to start even though this is not really a truthful, focused and clear image of whats happened for the last 3 months.

Good diabetes management can be sabotaged by many things and throw the treasured HBA1C out of whack. Is it just me or is it during those last 3 months before clinic when you get an infection?, you tell the GP NO im not doing steroids it sends me sky high but he promises that nasel spray he prescribed wont do that….. He was lying !

Stress, infusion sets coming adrift at the most inconvenient time, and a whole host of things can make my blood glucose high, ans some of those highs can be difficult to manage.

Its expected that my weight , and my blood glucose are within range, and my retina screen and flu shot are both in order. Its expected that iv taken my diabetes management seriously and that my results reflect that,

What is accepted ?

Any reasonable excuses / reasons for having a higher HBA1C thats not what it should be, any reasonable discussion looking for advice, and if youv got a good endo / diabetes specialist its also accepted that you might get into discussion about new technology or doing things a little differently.

 

In Hindsight what do i wish is knew more about and what woulod  i tell myself to do better?

The answer to this was easy. I wish i knew more about the complications but there seems to be a “need to know attitude” where you only get told if they think you need to know but you don’t if they don’t think its necessary.

Unfortunately if im in a position where they think i need to know and scaring me might just get me to adhere to treatment and management better, then im guessing some damage has already been done.

Just for the record ! fear will always make me think twice before putting my hand on something hot, fear would make me stand back off the edge of a cliff, fear would make me adhere to treatment and manage my diabetes effectively.

FEAR IS NO BAD THING ………. and thats what i remind myself of when i need to do better. There is a very real fear of the complications (eyes, heart, limb amputation, kidneys problems, etc) that can happen if i dont manage my diabetes proactively. My pancreas might have died but when the rest of me does i want to go with all my bits intact.

 

Needle Re-Use. – o yes we do !!!

We all know that needle reuse is not acceptable or even hygienic, sure thats why we are given our pen needle tips in boxes with more needles that we would ever use in a month.

Reuse of needles will lead to greater scar tissue as the needle becomes blunt and loses its lubrication after the first use, in turn leading to lipohypertrophy,

Lipohypertrophy is when fatty lumps appear under the surface of the skin and is a fairly common side effect of insulin injections. This will usually occur if multiple injections are administered to roughly the same part of the skin over a period of time.

However……….

The question was why did we think needle reuse happened ?

We had seen the questions before we got there so we could have time to think and prepare, but i didn’t need to think to hard to answer this one.

I asked them all to imaging being in the supermarket doing the food shop, or even better imagine for a few moments being on a crowded bus with shopping bags on your lap while you are glued to the passenger next to you. The bus is on a bumpy road and youv no lap space to use but you know you don’t feel right and probably need insulin.

I then proceded to give them a visual rather than just explain.

So out came the finger pricker and the test strip, ok iv now established that my blood glucose is out of range and i need insulin.

Then i took out the pen, took the cap off, got the pen needle, ripped off the paper seal, screwed it to the pen, lifted off the outer cover, then the inner cover, dialled up the units needed and injected all while holding all the various parts in my other hand.

Then i had to find the various parts id removed and find a safe place to put them, all on a crowded bus with no lap space.

At that stage i would have had in my hand,

A used test strip

A paper seal

An outer cover

An inner cover

A needle tip

A pen cap

 

All these in one hand while i put away the insulin pen into its wallet and put it back in the handbag that i wasn’t able to keep hold of while i secured all the little pieces involved in using my insulin pen with a new needle tip.

The far easier and convenient thing to do was to pop the new needle tip on the pen before i left the house and leave it on until i got home, which is exactly what i used to do.

This became so handy that i did it every morning whether i was going out or not.

NOT recommended under any circumstances but i did it, before my pumping days.

My suggestion was that they should manufacture a needle type cartridge for the top of insulin pens,  much like the multiclix lancet device.

There will always be a difference between what they think they know to be best practice, and what we actually do. Why ? because we live with this day and night for the rest of our lives.

The problem is not that we do it, its that there is no other option until the manufacturers come up with another / better solution.

I read on the internet …………..

If the moment you uttered these words in clinic was recorded and played back in slow motion, you would see the impact these words had, by “The look” of horror that can reduce us to nothing more than that of a bold child who has done something dreadfully serious that warrents and good telling off.

These words to a diabetes nurse specialist can very often open a door to that dark place of the unknown in their opinion, because if they think you need to know they will tell you but Dr Google is a NO NO……….

Thankfully most of us Nod at all the right times in clinic, answer yes and no in the appropriate palces, and then research the hell out of every single aspect of diabetes until we can find a place to live kinda comfortably with what ever knowledge we have gained.

We really did have a great day, it was packed full of information, They all listened intently to what each of us had to say, we had a delicious lunch, and before we left for home, we were given a tour of the plant where we saw how our needle tips and syringe injections were made, assembled, packaged and boxed for transport to our pharmacies so we can continue to inject our insulin safely and hygienically.

NO ! we did not get paid for our time at BD. We advocates, do this to gain the knowledge we need to be able to write about it, and then we can help you learn too.

 

davina-lyon

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Davina Lyon

 Co-Founder of Diabetes T One & A Diabetes Life

 

 

 

 

 

 

In July I received a pm to our Facebook page from Forward Design. They make a band to hold your sensor secure on your arm, price is roughly €30 – €35 depending on model and color.

Initially I thought, yes, great idea for the Libre wearers who are having difficulty keeping a sensor in place either on their own arm or the arm of a child, but my sensor is an Enlite.

The enlite sensor is recommended to be worn on the tummy area but I had decided to try it on my arm for a change and join those who were clearly spreading awareness and making a statement about their Type 1 Tech.

To my delight the accuracy was amazing and even tighter than when worn on my tummy.

Shane from forward design asked me to send him a sensor & transmitter as I would wear it and with his printing technology he said he would make me one for my enlite and I was thrilled at the possibility of being like all the other sensor wearers.

I quickly got on to Medtronic and requested a faulty transmitter be sent to me. ( faulty ? Yes as I only wanted the shape and dynamics of it ) I was already wearing a perfectly good one.

Medtronic very kindly obliged and when it arrived in the post I quickly attached it to a sensor and sent it off to Shane so he could do his stuff.

The initial sketch arrived and then the uncoloured vertion ( see below pitures )

 

 

 

 

 

Then came the really great news, I could have it in whatever color I wanted.

Shane’s motto is !

Why hide your tech – dye it to suit the frock you bought for the wedding…

https://www.ritdye.com/

Now things were getting really interesting.

My Grand daughter calls the sensor & infusion set on my tummy area “my Ouchie’s” because she sees them like plasters on an ouchie just like she gets when she has had blood tests in temple street.

 

Alyssa’s first color to recognize and verbalize was Pink, so grandma  of course had to have a pink ouchie, and here it is……..

Finally the postman arrived and as luck would have it my sensor failed, so without delay a new sensor was deployed and arm band put in place.

It’s comfortable to wear and as the band itself is adjustable there’s no pinching, pity about my bingo wings  though so in case your wondering, no it’s not on too tightly on my arm.

it’s not cutting off my blood supply and my fingers didn’t turn blue with lack of circulation lol.

If I want to wear my sensor on my arm I’m prone to swiping it against a door frame, catching it in a sleeve or in other words making it come off or dislodge in some way. The arm band protects my sensor and transmitter as I go about my daily stuff.

Any image you get here of tightness is a mix of a few too many pounds and old age bingo wings. Iv now been wearing mine with great ease and comfort and my sensor was not at risk of being pulled off with a tight sleeve, twisting and turning in bed at night, and it hasnt budged even though iv swiped it off the door frame a couple of times.

 

Now a little about Shane from forward design.

As a dad of a 9 year old daughter with Type 1 Diabetes, Shane was fully aware of the life-changing condition

and also the massive benefits that technology can bring.  He developed these systems to compliment the technology

to allow people with  T1D to have a comfortable, flexible and removable holder, as they have to be worn 24/7.

They are printed to suit their arms, so the flexible plastic takes the strain – not the elasticated strap on their arm.

you can view videos and learn more Here
Shane now has an online shop for anyone who would like to purchase one for themselves or for a child.
The Shop Link  is here . To make it easy for you to find it then you can start the process for yourself.

 

davina-lyon

I’m Davina, I’m not a professional, just a person with type 1 diabetes sharing experience

 

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Davina Lyon

 Co-Founder of Diabetes T One & A Diabetes Life

 

 

 

 

Positively  Pumping

All too often in we hear the problems of pumping insulin rather than injecting it, well this is a Positive pumping post 🤗

 

Once upon a time I injected insulin and my only means of checking my Blood Glucose was finger pricking until I discovered the Medtronic guardian, which is a continuous glucose meter only. Calling it a CGM is the short version.

Now its 2 years later and I’m using the  medtronic 640G minimed system, yes I have had a glitch now and then but I can’t imagine going back to how it used to be when i was injecting.

Any glitches Iv had were quickly rectified with a phone call to Medtronic’s 24 hour help line.
I’d recommend my Medtronic equipment to anyone thinking of pumping, and as the fashion trend at the moment is wearing a sensor on the arm Iv put my enlite sensor on my arm too, and with great accuracy results.

 

Now let me just say here that there are different makes of insulin pump im just talking about the one i have because its what i know. I also want to say that im writing this to give others the positive side of pumping and i do NOT personally benefit in any way from the company.

 

Injecting means, no matter where you are or what you are doing if you need insulin you must firstly screw the little pen needle onto the pen and then dial up the units you need and inject, then unscrew the pen needle and pop it into something safe to discard it. Like a little container or something.

 

 

 

When i was on a bus or in the car it was all quite fiddly really, and did take a little time away from conversation or watching for my bus stop.

 

 

Pumping insulin is a whole other ball game, every 3 days i fill my reservoir with insulin, pop it in my pump and change my infusion set, (the site that attaches to the insulin tubing coming from the pump)

In the same scenario, no matter where i am or what i am doing if i need insulin, i just select the amount of insulin i need and press, next and then deliver, with no fiddly bits to dispose of and put away.

Now here is the added bonus, with the pump i wear it also has the CGM, its a clever little relationship that my pump and CGM has.

 

I wish this was my belly, but i can assure you its not.

You see i wear a sensor also A glucose sensor is the part of a continuous glucose monitoring (CGM) system that is inserted under the skin and measures your glucose (sugar) levels.

The CGM is reading my Glucose level all the time and then communicating with my pump, meaning if my glucose level is above range it alarms to let me know and also if my glucose level is low or getting low it will also alarm to let me know.

 

The added safety net here is that if im going or gone low (depending on my settings) because my sensor has told my pump about it, my pump will suspend (meaning stop delivering insulin) until iv corrected and my glucose come back within range.

 

When talking about my glusose when wearing a pump you may have noticed i don’t say blood glucose and thats because a sensor is not reading blood glucose its reading interstitial fluid (ISF).

CGM works through a tiny sensor inserted under your skin, usually on your belly or arm. The sensor measures your interstitial glucose level, which is the glucose found in the fluid between the cells. The sensor tests glucose every few minutes. A transmitter wirelessly sends the information to your pump.

Now there is a bit of learning to be done here but when i started pumping i also received education about how it all works. This is very important because there can be a difference between blood glucose readings the interstitial fluid (ISF) and the main reason for this is that glucose will be in the blood before it is in the interstitial fluid. Once you gain on understanding of this it all falls into place nicely, but you can read more about that by following this link.

I was once that person who said i would NEVER wear and insulin pump. Some of my reasons were that fact that something would be attached to me at all times, and my other reason was that i was afraid that through the night with insulin pumping away i could have a serious hypo and not wake up.

I changed my mind and started to consider it because my family circumstances were changing and i was going to be a Grandma. Fiddling with an insulin pen and pen needles was going to become very awkward and inconvenient.

Ok so lets see how i coped with these.

  • Firstly, i got used to having something attached to me because the benefits vastly outweighed any inconvenience.
  • Secondly, while wearing a CGM as well as a pump, it meant that my insulin delivery would suspend and an alarm would wake me to make sure i could take in glucose / sugar to correct my low, so that was my fear of not waking up to a hypo sorted.

NO ! it has not all been plain sailing, iv had glitches along the way, but then i also had glitches with prefilled pens and needles.

The change has been worth it……………

 

davina-lyon

 

I’m Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Davina Lyon

Co-Founder of Diabetes T One & A Diabetes Life

 

 

 

 The Importance Of Advocacy and Support Within our Diabetes Community 

 

During  this summer  there have been some reasons why I have taken some time to assess my position and activity in our community.

A few things have that happened have made me see how judgmental some of our online support groups can be and i will admit that it has shook me very badly.

Diabetes Community Ireland is an online support group that I am an admin of.

This is a support group where the judgmental will NOT be tolerated, I feel in a private group where only members can see what is posted, we should be able to speak freely as long as we are not being derogatory or slanderous about another individual.

I don’t tend to post very often to support groups, but when i do its generally with what i consider to be good news, a funny incidence, or the fact that Im in trouble and need help, sadly on one of these occasions i was met with judgmental comments that hurt and shook my confidence and self esteem very badly

However after much thought i do feel our community need people just like me, people who are NOT afraid to speak out, people who are not concerned about being politically correct, but are willing to say exactly what is on their mind about any injustice they see happening within our community.

We need people to Advocate together for whatever is needed and lacking in our community.

Diabetes Ireland has published its 2017 report and after reading it carefully, i noticed Kildare still has NO footcare for people with diabetes. In fact i spoke to someone recently who told me about a youth with a varruca on her foot and after seeking an appointment with a foot care professional they were told that in Kildare, only if your over 64 years old can you access free foot care.

This is something I found out a few years ago and sadly nothing has changed since. It seems if one of us hasn’t lost a foot or leg by the age of 64 then they will look at what we are left with at that stage,

NOW IS’NT THAT NICE OF THEM !!!!!

If this is something that you find unaceptable  please write to the TD for your area, you can use “find my TD”  to find out who yours is and make your feelings heard.

 

ADVOCACY

Why ? because sitting back and expecting everything to just come to us without a fight is a pipe dream that we cannot afford to indulge in.

During this summer i have watched another national charity, SBHI go from strength to strength raising funds and producing a very strong awareness video.

No i am not criticising Diabetes Ireland here but i do need to point out that SBHI have a huge support from their very dedicated community, in short the daily interaction the regional branches have with their national charity is impressive and everybody gets on board with advocacy and awareness.

This is something iv found lacking within the Diabetes community and at times those actively advocating can be subject to a lack of support from the community in general.

WE NEED TO SUPPORT OUR NATIONAL CHARITY “DIABETES IRELAND” because its them who back us when we go forward with a campaign or cause we are fighting for.

Its them who create the correct way of moving forward with a campaign or cause.

For me now, going forward has to be done in a way that gets attention for whatever we are fighting for.

There was a time when I had a wish that a very strong and powerful film would be made and aired on our national TV for all to see, but this kind of thing can only be made possible with funding.

We are constantly fighting injustice and discrimination, examples of this is are:

The way freestyle libre was only made available to children and teens but not adults, thats age discrimination.

The type 1 model of care for adults has only just come into being, but the type 2 model of care and the model of care for children has been in existence for quite a while, more age discrimination.

Don’t even get me started on the HSE and foot care. Its like a post code lottery, and even more age discrimination, sure if we reach the age of 64 with 2 legs and 2 feet , only then will we get foot care as part of our overall diabetes care and entitlements, even though feet and legs are a high risk area when it comes to complications of living with diabetes of any type.

 

IM CALLING FOR ADVOCATES TO GET TOGETHER, WORK TOGETHER, AND REALLY MAKE A DIFFERENCE.

IM CALLING FOR EVERY PERSON WITH DIABETES OF ANY TYPE IN IRELAND TO BECOME A MEMBER OF OUR NATIONAL CHARITY.

AND THEN……

IM CALLING FOR OUR TYPE 1 DIABETES COMMUNITY TO INTERACT WITH DIABETES IRELAND AND LET THEM KNOW WHAT WE NEED THEM TO TRY AND ACHIEVE ON OUR BEHALF.

IF YOU HAVE ADVOCACY IN YOUR BLOOD, PLEASE GET IN TOUCH WITH ME BY EMAILING td1ireland@gmail.com

TOGETHER WE CAN MAKE A DIFFERENCE !

I’m Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Davina Lyon

Co-Founder of Diabetes T One & A Diabetes Life

 

Who is Davina Lyon​ – A little insight into me​.
I am first & foremost a family person,​ a mother, ​a ​Grandmother, ​and​ a mother in law.
I love gardening and relaxing in the sun with my 2 dogs.
Iv got several tattoos, some were done before my Type 1 diabetes diagnosis and some after, and im not saying where they are lol.
I dye my hair myself always neglecting to dye a substantial amount of grey in my fringe area just over my right temple.
Iv earned my grey the hard way and im quite proud of that.
Im a big Harry Potter fan, and those who know me say im a bit of a witch.​ Next stop is Hogworts……
Im a firm believer that what you put out , you will recieve 3 fold and this has always proven to be the case for me.

After all​ that,

I am a person with Type 1 Diabetes who was diagnosed at a later stage in life just before my 50th Birthday.
Because of the trauma and crippling fear I had at diagnosis I did everything I could to learn as much as I could as fast as I could about Type 1 Diabetes, it’s causes, treatments, and the technology that could possibly make life just a little easier while living with this disease.
I’m not a shy, shrinking violet type of person, I’m more of a make noise and plenty of it kind of person when I believe passionately in a cause, issue, or injustice.
I do best when surrounded by people I can interact with and although some alone time is welcome, too much of it can make me lose my way a little. Basically I need a sense of purpose, without a purpose I ​tend to ​get a bit​ lost.
I can recover from being let down once, sometimes twice, after that it’s shutdown time and there will never be a third time. My confidence can be shaken easily.
Advocacy:
This came kinda naturally to me because of the kind of person I am but I think it’s really important to remain impartial, so I don’t personally benefit when interacting with companies about various diabetes related topics and technologies.
I think it’s important everyone understands that I also don’t benefit when advocating with a charity who may be sponsored or supported by a company.
In short​,​ nobody pays me and I don’t allow myself to be compromised.!
But I do want the information they provide to me.
Although I’m on a Medtronic 640G insulin pump and CGM combined, I still set up the Libre4All petition which amassed 19,003 signatures because i firmly believed the decision made to make it accessible ​only ​to children / teens​, reimbursed by the HSE​ but not adults, is age discrimination, then I went forward with the campaign with other advocates from our community​ to finalize and deliver it to our government, it was ​most definately ​a team effort.
I am very much a team player and would be the first to say there is no “I” in team. I always endeavor to give credit where it’s due and wouldn’t dream of taking credit for something I didn’t achieve alone. Integrity is a big thing for me.
The Ego:
If an advocate is advocating for ​personal ​credit or recognition then they are advocating for themselves and their status. ​Although this might inevitably get a result for people in our community, we must recognise that is was noise created to bring personal attention for status.​ Th​is is when advocacy​ i​s​ Ego driven.
I believe to be a​ true​ advocate, is to put forward a case on behalf of, or to support along side of others​, as a team​ fighting the good fight together.
I’m most comfortable ​advocating  as​ part of​ a team and if at the end of it all someone appreciates what was done and gives recognition to who achieved it then that’s a bonus, but I hold firmly in my mind that it’s not all about me, it’s about, and for, all of our diabetes community.

From time to time I get asked to try a new product so I can let others know about it in an informative way whether that’s positive or negative.

Other times i get a call to meet and interact with a company who supplies diabetes related stuff.
This week alone Iv had 2 of those phone calls and when I decide whether to accept or decline them I will let you all know about it and my reasons for my decision.
Iv Co Founded ​alongside​ John O Reilly​,
Diabetes T One Facebook page
Which is a private support group
just press join and an admin will admit you.

“My Mantra while living with Type 1 Diabetes is”

I’m Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Since starting on my insulin pump (the Medtronic 640g) a year and a half ago Iv wore it in many ways, hanging on my bra, on my waistband and when showing off was needed I’d pop it on my pocket where it was clearly visible.

( sure that’s the “in” thing now ).

 

The sensor and infusion set was a bit different though and always ended up on my tummy.

I must admit to feeling a little envious of those with the Libre flash glucose meter on the back of the arm and clearly visible when worn with short sleeves.

The enlite sensor is recommended for the tummy but what the hell I thought I’d get with the diabetes fashion and see how it performed on my arm, all visible like the rest of my diabetes colleagues.

Now usually there is a little difference between the readings of a finger prick and the readings from a cgm (continuous glucose meter) This is because the finger prick is testing blood and the cgm is testing Interstitial fluid, or ISF. Glucose hits the bloodstream first and the ISF after that ( hence the delay and difference in results )

However since Sunday when I placed my new sensor on my arm the difference in readings had been reduced. Since Sunday my results are either the same on cgm and finger prick or they are 0.1 in the difference.

Sorry, I never tried this before but delighted to discover now that wearing my sensor on my arm gives a very nearly mirror image of my blood tests by finger prick.

I’ll wear my sensor on my arm from now on.

I’m Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin-producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

I wrote this for a friend who was only newly diagnosed with type 1 diabetes and she was struggling.

 

When she explained to me how she was feeling it brought me right back to when I was first diagnosed. I wanted her to see that she wasn’t alone and that I did understand.

Rising From The Ashes, with #Type1 #Diabetes

 

There have been many times in life when iv had to rise from the ashes, and each time iv done it, it’s always been with a sense of where iv been and where I’m going. Each time I rose in the past, iv had a network of friends and family behind me that I was somewhat sure of.

 

Upon my Type1 diagnosis, in the ashes is where I honestly ended up, this was one fall I’d never experienced before, and I knew beyond a shadow of a doubt that rising this time, would be one of the most difficult tasks I’d ever taken on.

 

Yes, learning the regime and lifestyle I now had follow was going to be challenging, but that was just maths. Counting carbs, working with ratios I’d been given, following sick day rules, being constantly watchful all day and all night, clock watching, always travelling with food, insulin pens, BG meter, test strips, a hypo kit and other hypo fix before things get too bad. Always thinking of food and when your next meal or snack is. Planing every detail of my day in order to remain stable. Its not in any way easy, but it’s do-able.

All this information initially comes from our diabetes team, in what ever hospital we are attending.

 

What they don’t tell you about:

From the first day of using insulin, newly diagnosed, and now at home ‘flying solo” the absolute crippling fear that sits firmly in the very front of your mind every single moment of every single day. “The fear of having a hypo” we know what can happen, we know what to be aware of, and yes we are told what to do.

Then bedtime comes………

Have you ever been terrified to close your eyes, in case you don’t Wake ?

Well that’s our first hurdle, it’s about then, we, “in our logical thinking” feed our diabetes. We automatically think first and foremost as a matter of priority about waking up, that’s all, just wanting to open our eyes to start another day.

At first we think going to bed high, is going to achieve this. It’s only later we learn that this practice is just as dangerous as being too low.

It’s that balance we need, I call it “walking the wire”

 

The isolation:

This feeling comes with the judgemental glances, the comments, the disapproving noises and gasps. The O My God are you really going to test in public? The, seriously are you going to inject in a restaurant? The noises of intolerance people make as you assess the food in front of you in order to work out your dose.

Yes, they would be happier if you took yourself off to the public toilet, full of germs and bacteria to inject like an addict, just so they can be comfortable.

The isolation happens, when we decide to hibernate and shield ourselves from this kind of behaviour, or worse again do what they require we do, and do it somewhere else.

The insult added to this, is they are usually the very same people who find us, in a dark and lonley place, crying constantly. That’s when they swoop in and say “you know depression and diabetes is quite common” they might even offer to drive you to the GP to talk about depression, but they never helped when pushing you into that corner.

This is something, that only someone diagnosed, or a carer of someone diagnosed, with type 1 diabetes will understand.

 

The blissfull ignorance & hurt:

This is when you make a decision one day, to help your friends etc to understand. Your all prepared for the conversation, when the opportunity arises. Your going to explain in simplistic terms, your going to educate gently. If we are totally honest we are not doing this to help them, we are doing it to help ourselves to fit back in to a place we once belonged.

You seize your your opportunity, and quickly realise there’s a lack of interest, you feel sad and defeated. Lost and lonely.

Iv spoken to many people who have gone though this, and yes their friendships have changed.

They feel more comfortable among those who speak the same language and live the same type of lifestyle. This way there is no need for explaining, and no need for justifying why we do the things we do.

 

This is why our online community is of so much importance, & Facebook is invaluable, we talk and exchange ideas and experiences, we may not have met face to face, but we are friends, because these people understand, learn, tell us about everything, and we don’t feel isolated or judged. These people put out their hand and help us up out of the darkness and isolation, until we can someday stand alone and help another going through the same thing.

 

Why am I posting this now ? Because if this is how you are feeling then I’m hoping you see that you too can be that Phoenix rising out of the ashes……..

 

 

 

Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

 

 

Please support me to help raise funds for Diabetes Ireland.

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

 

https://www.diabetes.ie/fundraising/donate/