I’m using a variation of Humble Pie’s “40 Days in The Hole” for this blog post title, and it’s a pretty apt description at times. Sometimes this disease can indeed feel like trying to crawl out of a hole. It’s overwhelming. It’s exhausting. It is 24/7, 365 days a year. You never get a break. You can live a good, productive, and even healthy life though.
This past December 2017, I celebrated not only my 50th birthday, but my 40th “diaversary” as well! Yes, that’s what diabetics call it. It’s a thing. I was diagnosed on my 10th birthday and was hospitalized for a week at Rainbow Babies and Children’s Hospital in Cleveland, Ohio. My daughter (also a type one diabetic) loves to hear the story of me being brought a birthday cake in the hospital “dorm” room, like you used to get back in the day, and everyone singing happy birthday to me only to have the cake promptly removed from the room! Ack!!
This 50th birthday was much better than that one though! My boyfriend and I took a trip to London to ring in my half-century milestone and this time I got my birthday cake AND got to eat it too!
It was 1977 the year I was diagnosed and back then treatment was, as I like to “sort of” joke, one shot in the morning and hope for the best. I was started on NPH and that was pretty much it for a good while. Regular came along not too far after, but I only used it for breakfast and dinner, no bolus at lunch or even really anytime after. We were slaves to the dreaded Exchange Diet. If you don’t know what that is, count yourself lucky! We were on very strict carb/protein/fat/fruit meal plans at particular times during the day. There was the “Free Food” list that I’m sure we all gorged ourselves on. It’s probably why I like dill pickles so much. It sucked, to be perfectly blunt.
I also had no means of checking my blood sugar levels. I went into a clinic once a month for a fasting blood sugar test, which we all know now is not an accurate gauge of overall management. I did have Chemstrips though. Unlike modern ketone testing strips that you just pee on, with these, you peed into a cup, which you then poured into a test tube and added a tablet of some sort making a pretty disgusting Alka Seltzer imitation. Then you’d dip the Chemstrip in and match it up to a grid of a gazillion little color cubes.
Another “joke” I often throw around is that you had to have a degree in chemistry to be a Type 1 diabetic back then! When I did eventually get a glucometer, it cost my mom a fortune and it had a spot on the kitchen counter where it stayed and never moved from. I mean that literally. If you moved that brick – which it really was – you had to recalibrate it! I never took it anywhere with me, so was only able to check my glucose levels when at home – and of course only a couple times a day as that’s all the test strips we were allotted.
So, in honor of living a relatively uncomplicated (I mean that only medically, of course) life with Type 1 diabetes for 40 years, I’ve compiled a list of things that have changed in the treatment and understanding of this disease – some for the better, some maybe not so much.
- At diagnosis 40 years ago, I was told that a cure was 5 years away.
- Clearly, nope.
- I was told I probably shouldn’t have children.
- I have 3 kids and my pregnancies were all healthy diabetes-wise.
- Portable glucometers.
- Insulin pumps – and closed loop ones at that!
- Continuous glucose monitors.
- That has helped me eliminate severe lows and that’s huge. I still get lows, but I get alerts before it becomes a serious problem.
- Technology that lets me share my health information and blood glucose levels instantly with both my boyfriend and my doctor – it also allows me to see my daughter’s information.
- Better insulin – faster in some cases and no-peak long-acting insulins as well.
- Higher prices for insulin – WAY higher.
- Better ways to manage T1 – no more Exchange Diet! We eat what we want – we just need to know the carb count so we can dose insulin appropriately.
- Airport security knows what all these devices are now and I don’t (necessarily) get the third degree and search.
- On-line support groups – it makes it so much easier to find other people in your particular situation to talk to – I found myself very alone when I was a kid – no other T1s for miles around.
- There are promising studies working towards a cure.
- I’ve spent countless hours talking to insurance companies and arguing to get my supplies covered. That has never changed and only gets worse.
There are so many things that have changed and I’m sure I’ve left a ton off this list. These are just the highlights. That doesn’t matter though. I still hold out hope for a cure. Maybe not for me anymore, but I do hope for my daughter. I’ve had Type 1 diabetes for 40 years. I don’t remember not having it. My daughter has had it for 7 years now. She doesn’t remember not having T1 either. I look forward to the day she doesn’t remember having it.
