Changes

I just "celebrated" my 19th anniversary of my diagnosis of Type 1 diabetes.  Usually I get pretty down around this time of year, but this year I took a different approach.  I decided to look at the good things in life and a made a list of them over the past 19 years.  It had the usuals on there- a great marriage, two healthy kids, a good job, etc- then I got to thinking of my diabetes and I can't believe how much my diabetes care has changed in 19 years.  I know for some people, 19 years is a drop in the bucket, and I admire those people who have lived with this lifestyle for so many years!! 

Thinking back to 1991, I only had to test my blood sugar 4 times a day and the meter required a huge amount of blood.  It took 45 seconds to countdown and if the sample was a little too small or large, it didn't read it.

I took five-six shots a day and I had to mix the humulin N and R together, load the needle in the autojector, and shoot myself.  Then I had to wait at least 30 minutes to eat.

I had to keep a diary of all my blood sugars, and if I missed a couple of days, I had a lot of makeup work to do.

I saw my pediatric endocrinologist twice a year and they did an A1C once a year.

Now I think of my care and I am amazed at how much progress there has been.  I now have a meter that requires a pindrop size of blood.  I have an insulin pump that requires a needles once every three days.  I have a CGM that monitors my BS levels all day long, and I see my endo 4 times a year and get all kinds of wonderful labs done to make sure everything is ok.  I have a computer program that loads all my pump data for me so I no longer have to fill in the diary.  This program also shows graphs, trends, patterns, and a bunch of other great information to improve my care.  Best of all, there is Juvenation.  I don't post much, but I read many of the posts and it is very helpful to see there are other people out there who experience the same probelms as me.  They offer advice, stories, and luck when needed, which helps me get through my slumps.

To me, the level of care has made life much easier.  I think back and wonder how on earth was I able to test my BS only 4 times a day.  If I don't do it every couple hours now I start to wonder.  I wonder what it will be like in another 19 years.  Will there be a cure?  Hopefully!!

P.S. Thank you Ron Santo for all the work you did for the JDRF and the Cubs.  He brought diabetes to the public eye in northern Illinois, even getting Walgreens to donate money to the JDRF for every walk the Cubbies drew during a game.  Rest in Peace #10!

Does anyone else have similar stories of how their care has changed over the years since the diagnosis?  If so, I'd be curious to read about them.

It is amazing how things change.  I was diagnosed in 1977 and I live in the UK where we have 'free' health care.  At the time I was diagnosed free healthcare did not include the provision of disposable syringes and needles so I used a glass syringe which was stored in surgical spirit, the needles were also re-useable and were also stored in surgical spirit and I had to clean the aperture of the needle daily with a small wire - in fact disposable syringes were only provided to those with T1 after 1982 when the government gave syringes to drug addicts to prevent the spread of HIV and AIDS and were then embarrassed by the diabetic community into providing us with syringes; however this did not include needles for Novopens since MDI was considered to be a luxury by the UK government until 1996!

Blood tests did not exist at home we relied on urine tests using pipettes to measure out precise quantities of water and urine before adding clinitest tablets (a reagent reducing sugars test in the form of an effervescent tablet).  When bg testing first came out for home use it was not used for routine testing but for 'profile days' where we were encouraged to test bg levels every 2 hours in a 24 hour period.  When electronic meters became available we had to purchase them and my family certainly could not afford one, the testing took 2 minutes and required you to wipe the blood from the stick at 90 seconds I think - oh yeah and the accuracy was +/- 20% variation when compared with lab results.

Insulin was given in a single daily dose using Monotard although this was probably a reflection of the fact that I was a young child and producing plenty  of Insulin Like Growth Factor (IGLF) which would have masked some of the effects of insulin deficit.  The insulin was either porcine (pig) of bovine (beef) and I remember being allergic to one or other of them and coming out in huge hives at the injection sites.  Insulin also came in different strengths either 40 or 80 which meant performing complex calculations to derive the dose at injection times, needless to say dose adjustments were not part of the normal treatment protocol.

I remember a very unfortunate incident where I was taken in to hospital for some routine surgery that was not related to my diabetes and the anaesthetist did not understand diabetes so he refused to allow me any insulin because it would interfere with the anaesthetic.  18 hours post op  my mother phoned my endocrinologist at home to get an emergency prescription for a rapid acting insulin to prevent the onset of a dka coma, I was sent home from hospital the very next day because they could not cope with T1 diabetes.  I was aged 7 when this happened the hospital could not be held accountable because they had crown immunity!

In spite of these experiences the amazing thing about my entire experience of diabetes is the fantastic team of medical staff that have treated me over the years.  Yes there have been some bumps and bruises along the way but without exception these have never happened at the hands of the endocrinology specialists or DSNs all of which have gone above and beyond to make living with diabetes as manageable as possible.  A big thank you is due to all those who have had a principal role in helping me to manage my diabetes.

These days of course I use a pump and measure my bg fanatically constantly trying to improve my control and later this year I am organising and taking part in something called the three peaks challenge where I will be raising money for the JDRF.  The challenge is to climb the 3 highest peaks in the UK in a single 24 hour period (Ben Nevis - Scotland, Scafell Pike - England & Snowdon - Wales) including transit between the peaks.  I have already been training and we did a trial run on the Welsh 3 peaks challenge in October, the experience was amazing and I learned a lot about controlling my bg levels on a marathon event.  40% Basal rate is far too much for peaks 2 and 3 and I consumed more glucose tablets in one day than I normally would in 3 months although I am not yet sure what the basals should be for peaks 2 & 3.

I am absolutely certain that a cure will be found however in some ways I think that we need to concentrate on prevention rather than cure.  Whilst I accept that my children have only a marginally higher lifetime risk of developing diabetes than the standard population I would gladly live with diabetes and all that diabetes entails if I could prevent my children from ever becoming diabetic.  I have learned to live with this and to a large degree have accepted the burden that it means to me and my family which is not to say that I would not be first in line when a cure is discovered!

I just celebrated 30 years since my diagnosis and man how things have changed. When I was first diagnosed we did not have blood checkers. We pee'd on a stick and it said you were LOW, 100, 240, 400 or HIGH, if I remember right. I do remember my first checker, it was a Glucometer and took forever and had to be calibrated every time you used it. I also remember switch off of pork insulin to NPH and Regular.  Not to mention it was huge! I have memories of my parents taking me to a movie and having to snealk a Tab soda in because Diet Coke/Diet Pepsi was not available at many places. i could go on and on.

I never get down when my Diaversary comes around. i celebrate because things have truly changed for the better. Plus I am very healthy I have a 6 year old that was diagnosed almost 3 years ago and I have taught her to celebrate too. She wants to bring cupcakes to school this spring to celebrate 3 years. i know, its kind of sick but I have found if I remain positive and keep it light then she does just well. She even changes her own pump sites and knows how to fill it. All with mom watching of course.

Thanks for putting a smile on my face with the memories!