From Band With Love……

I know, I am the worst blogger ever.  I usually leave it so far between posts that I forget how to log on and it takes me longer to work out how to blog :).

Tonight my son plays for the final time with his middle school symphonic band. In August he’ll be moving onto high school and marching band season. Which will bring new challenges for us to overcome and master. But first I want to talk about his middle school band and how much we will both miss it.

May 19th, 2015

It’s going to be an emotional night tonight. Matthew’s symphonic band play their last concert together. Although many of them will still be together in High School, this years band has been very special.

There is very little positive I can say about Matthew having Type 1 Diabetes. It struck him in November just after he started in 6th grade. I remember him coming home crying after one after school band rehearsal because they served hot chocolate and marshmallows to the kids, and he couldn’t have it. It was just 2 weeks after his diagnosis, he was on shots and didn’t know what to do. Obviously now he knows what to do and it’s easier as he is on the pump. He told me a couple of weeks ago how 2 of his band friends also didn’t have the hot chocolate because Matthew couldn’t. Makes me cry just thinking about how sweet these kids can be so supportive.

Other than the T1D community which is totally awesome, I want to say the only other truly amazing positive has been that I got to spend the last 2 1/2 years volunteering at every band event. Initially I was peed off and I wish I could give him some ‘freedom’ here to not have me hanging around.

My moment of accepting this is an amazingly positive experience happened only in February of this year. The 8th graders were getting the opportunity to go over to the high school and be taught by the high school band students, 2 pieces of music. The different instrument groups broke up into their sections and were lead of stairwells and other areas in the school to learn their new pieces of music.  I was the only parent that had to go along. I was feeling very sorry for myself as I had to sit on the hard floor in one of the corridors whilst Matthew and the other trumpet players got their instruction.

When they finished, we all moved back to the band hall.  My ding ding moment came, when for the first time I watched the band director bring this music together. It was truly a magically moment for me and I really appreciated just what an honour it was that I got to witness how they make music.

This band has been so special. I have watched them grow and they have become so absolutely phenomenal. It truly has been an absolute privilege to see the transformation from a beginner band into a band so awesome you would not know that it was 13 & 14 year old kids playing.

I also saw how the band director has totally enjoyed these kids performances. The last few performances of their UIL music, you could see him smiling the whole time.  It was such a pleasure to see how dedicated teachers can be.

I know I am going to be wiping the tears away tonight.

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‘Diabetes’ myths/perceptions/stigma, featuring ‘Getting diabetes wrong’ Coleen Nolan and Jamie Oliver

If you’re a Type 1 family, you’ll know what’s coming re Coleen Nolan and Jamie Oliver.  If you’re a Type 1 family, you might be of the view to just ‘let it go’.  However, my character trait is to make sure if something is wrong, it needs to be fixed.

When I first moved to the US over 13 years ago, I was mortified that the deep sea fish, Orange Roughy, was commonly sold here in all the grocery stores. Before I had left the UK, I watched the BBC’s wonderful series The Blue Planet. Most importantly, I remember the final episode which touched on the devastating consequences of some fishing practices. So I was mortified to discover Orange Roughy was being sold here. Even Whole Foods were selling it. I didn’t really get very far, but I’d like to think I planted a seed in some minds and when several years later, it was no longer available here, I might just have helped in a very small way.

So cue to the year 2015. We’re now 2 years and 3 months post Matt’s T1D diagnosis.  Awareness of T1D has really not changed at all, unless you’re one of my friends who are very well Type 1 Aware now 🙂  There are still negative portrayals of diabetes in the media. Such as this one courtesy of The Sun newspaper…….

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So what type of diabetes are we talking about? The Sun has just lumped all types of diabetes as one. They are telling their readers that everyone with diabetes is a burden on the NHS. That those with diabetes are obese, has a poor diet and does little exercise. It fails to mention that they are referring to Type 2 Diabetes.  It fails to mention that Type 2 is strongly genetic and that not everyone with Type 2 is obese, eats poorly or is a couch potato. There are many who are Type 2 that are slim, very fit but just happen to have family genetics against them. By failing to mention Type 2, they are also misrepresenting the other types of diabetes, such as Type 1 which has nothing to do with lifestyle choices, but is an autoimmune disease. Their readers will hear the word diabetes mentioned and assume all types are the same.

Then we have Jamie Oliver, who I have always admired.  I love his quest for better school meals for children. His advocacy in this area is admirable. However, what Mr Oliver doesn’t appreciate, is that Type 1 parents are also advocates. We are advocating for the perpetuating myths that surround Type 1. So when he was recently in California and posed in this photo…

jamie

he was obviously met with a barrage of complaints from Type 1 families. Mr Oliver was on a campaign for access to fresh drinking water in Californian schools, I believe. Which again is a worthy cause.  However, for some reason he ended up posing in front of this giant can of coke named Cokezilla with the word Diabetes, and holding sachets of sugar and a bottle of coke. Again what does that tell the public? All types of diabetes are the same. We all know there is nothing nutritionally good about coke. However, sometimes it helps people with Type 1 if they’re having a severe low blood sugar. Still,  Mr Oliver might like to look some of his high carbohydrates recipes and realize that those recipes have the same affect on blood sugar as that can of coke, and in some cases are worse. So diabetes is not quite as straight forward as he’d like us to believe.

Now he did issue an apology and was supposed to be looking into it. However, a day later he ended up retweeting the same photo that The California Endowment posted.  I guess he didn’t look too hard into the facts, or make any effort to understand why the issue.

I made a call to The California Endowment just over 2 weeks ago.  I was put through to Annie in communications.  I have yet to hear back from Annie.  I’ll be sure to follow up with her.

Then last week, just when we think it couldn’t get any worse, Coleen Nolan on the tv chat show, Loose Women, comes out with this:

The topic of the conversation had nothing to do with diabetes. But was about incentives to mothers who smoked during pregnancy to get them to stop. I have no quarrel with discussing those types of lifestyle issues that harm our unborn children.  However, when you say on national television “What about people who eat too much during pregnancy? The kids are born with diabetes. Are we going to pay them to stop eating?” Before that her reference was to children who were born with terrible disabilities because their mother drank in pregnancy.

She flat out told everyone her opinion was that children are born with diabetes because their mothers ate too much during their pregnancy. Unbelievable. Of the children that have diabetes, 97% of them have Type 1 diabetes.  The babies that are actually born with diabetes, thankfully fall into the very rare category of Neonatal Diabetes. There is a very small percentage of children that do have Type 2. That very small percentage with Type 2 maybe related to their diet, lack of exercise, being overweight and family genetics during childhood. But don’t pick of every single child with Neonatal Diabetes or Type 1 Diabetes for which their condition was not their mothers fault.  One fabulous T1 Mummy has this as her response on  her blog. She says what every T1 Mummy/Mommy feels and wants to say. Please go read this:

http://www.actuallymummy.co.uk/2015/01/29/dear-coleen-nolan-diabetes-not-fault/

Obviously after every Type 1 Mum was accused of causing her child’s diabetes, there was a flurry of complaints to Loose Women on their Facebook and twitter pages. This ‘forced’ a very reluctant Loose Women to make a very condescending apology on their Facebook page the following day. I was going to copy and paste it in here along with some of the comments from non-D families. However, it appears that Loose Women have removed the post completely. In Loose Women’s ‘apology’ the stated that Coleen had said that women who over ate in their pregnancies could risk their child going on to develop diabetes later in life.  Ummmmmm no, she didn’t say that at all. She specifically said ‘born with diabetes’. They also said that they would be sure in future to use the correct terminology that those with Type 1 demanded.  Well that’s a bit rude really. It’s not really terminology. It’s an actual autoimmune disease. It’s a different disease to Type 2.

They did also air this apology which was a little bit better than the Facebook one, however it appears what Coleen says and means are two entirely different things:

There are 2 things that really irk me when it comes to these media perceptions. I’ll move onto the most important one at the end.

The first is the response from non-D families. Most will tell us to stop  being overly sensitive. “Get over it, it’s no big deal”. “Could be worse”. Etc etc etc.  At what point did our society become so lacking in empathy/sympathy?  Probably about the time the media started to portray diabetes in such a negative manner.  What will happen when society finally catches on that 40% of cancers are lifestyle related?

http://snip.ly/xdXF#http://www.bbc.co.uk/news/health-30602994#sa-ns_mchannel=rss&ns_source=PublicRSS20-sa

Will the unaffected public start to blame cancer patients or their families for their or their child’s cancer? I really hope not. Our children with T1D face potential psychological problems. They can become depressed. It is not fair for society to compound the stigma that they face.

The 2nd and most important reason I am irked by diabetes myths, relates to taking away much needed awareness of T1D. Whilst the general population continues to think that T1 diabetes is a self inflicted condition, it will prevent a timely diagnosis of T1D in a baby, or a child, or an adult. You might ask how can you possibly blame public misconceptions for that? Well whilst everyone is being told it comes down to eating the wrong foods, someone who has always diligently fed their child the ‘right’ food will not consider diabetes as being a cause of their sick child who is losing weight. It will be dismissed as a virus.  It maybe dismissed as a virus by that child’s own doctor. Delay means Diabetic Ketoacidosis which becomes a life threatening condition very quickly. My own ignorance of diabetes before my son was diagnosed, almost cost him his life.  If I had left it 1 more day before taking him to the doctors, he might not be here today.

So if I am being overly sensitive, it is because I will never forget the day my son was diagnosed and in intensive care. I will never forget my boy who had a needle phobia, having to get over this phobia within 24 hours because from now on his life would now forever include needles. I will never forget seeing him lying in a bad with tubes comes out of his arms, with doctors and nurses checking for brain damage. I will never forget just how close to dying he came. Seeing your child come so close to death will change you. It changed me to do whatever I could to help my son live with this disease and to help others in my community that recently had children diagnosed with T1D. It spurred me to become an advocate and to stand up to those that perpetuate myths about diabetes.  It is about time, these myths are dealt with once and for all.  There needs to be a serious documentary on the subject.  There needs to be proper guidelines set out to media outlets so that the same mistakes are not made over and over again.

As the fabulous blog by T1 Mummy Helen so eloquently explains – Help us to stop people believing that parents have caused their child’s diabetes. To stop people making lives harder with their assumptions – a diabetic’s life is hard enough already, without worrying about what other people think. You need to do this, because whilst people believe what you believed yesterday, they won’t support the organisations striving to find a cure for this dreadful disease, and my girl will have to live longer with this hell.

In my case, my boy will have to live longer with this hell.

On the off chance someone in the media ever reads this, there are many families who will happily open up their homes to you, to show you what Type 1 Diabetes is. My home is open to whoever wants to listen, learn and finally for once and for all, get that much needed awareness out there and put a stop to diabetes myths.

If you got this far reading, thanks so much.

I’m probably the worst blogger ever

I really must start blogging properly.  It’s been close to a year since I actually posted anything. Not that I have many followers right now 🙂

There’s some subjects I’d really like to touch base on.  I’m going to really make an effort to put my thoughts down in writing finally. Thanks to WordPress for my reminder to renew my membership.  You’ve spurred me into action.

Later !

Organisation, organisation, organisation……….

So in the beginning I was totally overwhelmed with everything you need to learn. For me, I realized very early on that I needed to get ‘diabetes organized’. I’ve changed a few things along the way, but some of the things I learned to do early on have been invaluable to me and keeping my mind focused.

This first thing I did was make up a file with all the paperwork that I was given from the hospital. There was so much stuff handed to us to read up on, it was crazy. Soon as I got home, I put all of this into a file so if I needed to refer to anything, I knew where it all was. To be honest, I rarely look at this now as we’ve come along way, but we still have the file.

The next thing were the supplies and the snacks. You need space in your house for this stuff and this is the most important thing for me to be organized. My son now has an insulin pump & a CGM so our supplies now have taken over a whole cupboard ! To make my life easier I went to Target and bought several storage containers. I bought a smallish one for the ‘hypoglycemia supplies’ only.  That box stays in one place always and contains emergency glucose gel, juice boxes, skittles, Glucagon pen and instructions on how to use Glucagon pen in case of an emergency.

Hypo box

Then I had a box with snacks that contained 15g of carbs. In the early days of management, Matthew was told to eat a 15g snack whilst at school. He usually had that after PE. Then a 15g snack at bedtime. We’ve kind of done away with that box now as we manage his diabetes on a much tighter scale and with the help of the cgm discovered he did not need a 15g snack. I’ll go more into that later, but if you need those snacks, have a place to keep them organised.

Then I had another big box with a small amount of the supplies he needed on a daily basis. The rest was put in a cupboard (we get 3 months worth of supplies so it’s too much to store in my handy box). In the beginning it contained:

Syringes

Alcohol wipes

Insulin

Lancets

Ketostix

Now it contains

Syringes

Alcohol wipes

Lancets

Ketostix

All pump supplies

Hypafix tape

SkinTac

Uni-Solve

Lithium AA & AAA batteries

Frio pack

Lidocaine

Tagaderm

Easy access supplies box

I think I need a bigger box now ! Having a small quantity of the supplies we need to hand frequently, just makes it a little easier for me to grab what we need quickly. I’ve lost count how many times as Matthew needs to leave to get the school bus, and he announces he needs tape around cgm as it’s coming loose…arghhh. At least I know where it is, and I can deal with issue on hand right away without having to search for whatever is needed at that moment.

FOOD & KITCHEN ORGANISATION

Ok so this is a biggie. You need good kitchen scales. Measuring cups. Jug for measuring fluids.  Accurate carbohydrate counting at home means that I can see trends forming where I might need to change carb to insulin ratios. So whilst at home, I really am careful about how many carbs are eaten.

scales

A simple note book. To write down what is going to be eaten and how many carbs. This helps me so much every single day. I’m lucky that Matthew is older, so we have a chat before he eats to establish how hungry he is to work out portion sizes. That is probably more difficult with a toddler, so I’m sure others can offer better advice on that. Thankfully I have a non fussy eater child, so we can accurately work on carbs in advance and bolus before he eats.

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This was my calculation for mini sausage rolls I made for his birthday party ! Type 1 Diabetes is good for mathematical brain exercises !!

The other thing I did was in my pantry cupboard, things like flour, rice, sugar which I tend to store in Tupperware containers, I cut out the nutrition info from packaging and tape that to Tupperware containers. Saves me looking up carb amounts every time I bake.

Then we have the very important ’emergency kit’ that goes with us everywhere (not school as he has separate school supplies). This has a bit of everything needed to cover for emergency lows (Glucagon), candy, glucose tabs, juice for lows. Spare pump supplies for any issues that may occur (this has happened to us before, be prepared !).

Emergency kit

Finally we have the supplies cupboard which is gradually taking over all my storage space ! Helps to keep organized as I can see when supplies running low and gives me time to make sure new supplies are on their way.

Supplies cupboard

A quick view of all the ‘stuff’ ! (actually this is old pic and doesn’t include the CGM stuff !)

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One whole decade……

This fantastic Mum has been a great help to me. In different time zones, she’s been there helping me when struggling with a stubborn high blood sugar in the middle of the night. This is her sweet girl

theunderstudypancreas

http://www.kizoa.com/slideshow/d8127213kP176628012o2/one-whole-decade

This illustrates how from the very beginning, and our fear and trepidation of the new world we were moved to, we managed, with the excellent example set by our daughters, to overcome those darker days and flood them with sunshine and fun!

The past decade has flown past, with advances in treatment that we couldn’t even begin to imagine as we stood absorbing information in intensive care all those years ago. Words are fairly inadequate to describe how proud we are of our daughters.

Pumplette continues to thrive and embrace all that life has to offer and her sisters both take the same stance.  I can think of no better motivation for them all to become smart, sassy young ladies than the fortitude and resilience they all have to draw upon each and every day.

Although I would love nothing more than to liberate my second child from the…

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So what did we have to learn in the beginning?

Image Early day supplies !

So whilst we were in the hospital we were taught the basics of caring for a child with type 1 diabetes. This post is going to focus on the early days. Before Matthew went onto an insulin pump, and before we started more intensive monitoring.

I started typing out in way too much detail and then realized that, no one was going to read all that ! So here is the simplified version of our hospital training.

1 How to give insulin to our child

2 How much insulin to give to our child

3 How to use a blood glucose meter & lancing device (believe me I struggled to do this initially and that’s probably one of the easiest things to do !)

4 How to count carbohydrates  (I’ll talk about carbs in a separate post later)

5 How often we needed to check his blood glucose levels

6 What hypoglycemia and hyperglycemia is (well talk about that in another post too)

7 What to do in an emergency situation

8 How to use a Glucagon emergency pen (for severe low blood glucose level)

9 General information on what T1D is.

We were given a lesson with a nutritionist who recommended how many carbs for Matthew to eat with his meals, when he should eat extra snacks through the day and before bedtime. Matthew was also very happy to hear that a small tub of Blue Bell vanilla ice cream was only 18g of carbs ! We have a basic course of caring for a child with T1D. Plus we were shown how to draw up the insulin, mix the two types of insulin, and actually inject the insulin (that was so scary to do the first time)

Test paper and before Matthew could be discharged from hospital, we had to take a test ! As well as demonstrate that we could draw up the insulin and inject the insulin.

To be honest, Matthew could not wait to go home. I was actually terrified of him coming home. Suddenly you find yourself responsible for taking your child home from hospital and dealing with a chronic life threatening disease for which you are only just starting to get your head around. Remember how you felt taking a newborn baby home from hospital? Well multiply that by 1000 in terms of knowing nothing and that everything you do now, means your child’s life is in your hands. Scary !

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