Diagnosed with T1D – Some Life Changes You Can Expect

So now you are diagnosed with T1D and just starting a lifestyle change, what can you expect? I know that is a pretty broad statement, but the fact is that you are going to be surprised along this new path. You are going to be surprised by things like the time of day, exercise, food, colds, stress and people.

Dexcom-Screen-Shot-optOne of our first surprises after my daughters diagnosis was how her sugar levels and insulin requirements varied by the time of day. Her early morning doses were less effective so she has to really watch what she ate in the morning and keep that carb ratio down, and then in the early afternoon she tips the other direction where the same dose of insulin will over correct her and then in the evening she may need just a little more to keep her in that safe window. We also found that 3 AM was a magical time for her and her body seemed to reset at that time in order to get ready for the new day.

Tahoe-Hike-optExercise was another surprise. We found that although a good MMA workout would definitely get the sugar absorbing, so would workouts that I would consider much easier, like yoga. Also along these lines, any workout that got her upside down like head stands would also have the same effect. Now there is nothing scientific about this and it may not work for you, but it gives my daughter options when her sugar levels need to be taken down a notch and she does not necessarily have the time to get a long aerobic workout in. A short yoga session or some jumping jacks, pushups and hand stand pushups curbs her sugar levels. She has also found that dancing and gymnastics can also get that sugar moving in the right direction. This is a little surprising to me because I would tend to think that a good intense work out would be the ticket, but for my daughter, multiple forms of exercise really do help. So I guess what I am saying is don’t count out any form of exercise until you have tried it and tracked the results. You may be surprised what will work for you.

Obviously one of the biggest changes after being diagnosed with T1D, and one that totally sucks, is food, but there are foods that will surprise you and you will probably learn all about the new natural sweeteners, like Stevia and xylitol, but let’s face it, none are like that cane sugar that everyone is so addicted to. So as we tried to limit carbs to about 35g per meal, we noticed that some of the foods would allow a little more leeway. These will probably differ for you and you could probably write a whole book just on carbs, so I am going to save this for a later post, but let’s say crapes with raspberries and whipping cream may be a pretty good alternative to pancakes and syrup.

diadaylamuerte-optGetting sick will be another adventure for your T1D, and for Syd, it took us a while to figure out how she reacts. At first we did not know what was happening because we were treating a virus like a cold, but she reacts totally different to them. With a cold she tends to get real high sugar readings while when she gets a virus, her numbers just want to drop off the charts. This dropping has caused us a few emergency room visits because she simply could not keep her sugar levels up and we did not know what was happening. Now I do not know why this happens and it may not be the same for you but just be aware that you may react different to a cold as compared to a virus and the key is to recognize that there is a change in sugar levels and address it early and urgently. From a parents stand point, this is why I always tell my daughter to keep me in the loop, because kids and young adults want to push the envelope which can get them in real trouble.

The next surprise you are going to run into is sneaky and will jump on your Type 1 Diabetics back and cause you problems when you least need it, yep you guessed it, the dreaded stress monkey. Now as a student, my daughter encounters the stress monkey when tests come up or there is intense challenge, and it can cause her sugar numbers to sky rocket. For Syd, she gets real spacy and takes longer to complete a thought so you can imagine how that effects testing situations. So on days leading up to, and on, test days, make sure you watch those numbers closely and do what you can to keep those numbers in range and keep a clear head. We found that good, but obvious keys are early dosing, cutting the carbs back and of course a good work out. A good work out will kick that stress monkey’s butt weather you are T1D or not, by the way.

Probably the biggest surprise of them all, are people. I cannot stress this enough, you need to get all the doctor’s notes and state action and testing plans in place for your T1D student and association/club member. Now I tend to believe that people are generally good, but T1D is not understood by most people and they truly don’t understand the effects it has on the mind and body. This is where people will surprise you. Some people who you thought were really not that compassionate, will bend over backwards to help and you will also find others that have a T1D in the family. In our case my daughter had 2 teachers and a boss that had a T1D in their immediate family, which was a great help and a little bit of a safety net. So not only did my daughter have people that could keep an eye on her, but also knew what to do in case of an emergency. This was a great comfort to us especially in the first year after the diagnosis, when you are trying to learn as much as you can about T1D management.

Halo-Fair-2015-optNow, getting back to the state approved action and testing plans. The reason I suggest getting these in place is for what I like to call the Bizarro effect. Just as some people will bend over backwards to help, there are others that will not be sympathetic at all, to the point where they are truly Bizarro. For the people that fall into the Bizarro class, I find that it is not just a complete lack of understanding but also the lack of effort to even try to understand. They simply do not want to hear that your child can not do things the way they use to, and that they need a little more time to recuperate. Take 4H for instance, which is an outstanding program and does great things in the community. Last year the county fair was backed right up against my daughters orientation week at Texas A&M and I requested for her to be released out of the county fair 1 day early so she could sleep in her own bed and rest the day before she headed to Texas. The flight is relatively long, and until you learn not to fly American Airlines, it is filled with delays, gate changes and lost luggage. I was astounded with the resistance I met with. Now keep in mind that my daughter had been with 4H since 3rd grade and was one of the highest competing members and always helped out far beyond what was required. She had also become sick at the county fair the previous year and had an emergency room visit. So needless to say I was astounded when the original answer was “No” and that if she left they were going to strip her of her ribbons. It was not until I stated that I had a doctor’s note that they backed off. The county 4H leaders even told our local club leader that she was not to talk to me. This also cost us some good friendships because of the leader ship positions they were in and the party line they had to hold. The county 4H leadership even stated that we did not have a plan filed with them for her T1D, even though everyone knew she was diabetic and we had listed it on her registration papers and no one even knew we could file a plan. Keep in mind that these are people my daughter and I had known for years and we always pitched in more than was required. To this day it still astounds me that someone would have such the lack of understanding and compassion that they would deny a child or young adult 1 day of rest between 4H and a school event. So the moral of the story is that you will have this Bizarro effect happen from time to time and possibly where you least expect it, so have plans and doctors notes on file.

Our philosophy is not to play the “I have a disability” card, but there may be situations where you notice that you need to have your child take some extra time to recuperate or maybe take some extra time on a test. So I want to reiterate that it is best to have the proper paperwork in place and it will make the path a little smoother.

So what to expect after being diagnosed with T1D is a pretty big field, and it is going to be different for everyone, but hopefully I have touched on a few things here that will make your learning curve a little easier.