The First 10 Things I Wish Someone Told Me After My Type 1 Diabetes Diagnosis
The following post is exactly what I was looking for the first few weeks after being diagnosed as a Type 1 Diabetic later in life. I was diagnosed with Type 1 Diabetes August 4, 2023 at the age of 38. As a Licensed Massage Therapist and person with a strong background in healthcare I was able to navigate some things easier than others. This post is not about explaining what Type 1 Diabetes is from an anatomy standpoint nor is this post what I would teach as a Massage Therapy Instructor. This is just a list of 10 things I wish I had known the week I was diagnosed as I was navigating pneumonia and teaching myself how to inject insulin via Youtube. Diabetes affects more than 537 million people globally. Of that number roughly 51 million, or 9.5%, of diabetics have Type One Diabetes meaning they are insulin dependent. Anyone with Type One Diabetes requires daily insulin injections and management of carbohydrate intake with insulin which is more complex than it sounds. The following words were written in support of someone who was diagnosed last week and is written in a deep spirit of friendship:
The First Ten Things I Wish I Someone Had Said To Me The Week I Was Diagnosed With Type 1 Diabetes
Here is the hardest one in my opinion and hopefully someone has told you but one of the reasons you really need to take monitoring your blood sugar so seriously is because Type 1 Diabetes can be a quickly fatal disease due to low blood sugar. A low blood sugar in the 50-70 range can make you feel shaky, weak, maybe a little nauseous, or a feeling of doom. Sometimes you can do nothing and your blood sugar will bounce back up but if you stay below 60 for a bit without taking in any form of glucose it is possible for your blood sugar to drop deeply below that, at a blood glucose of 40-54 you become at risk for having a seizure or losing consciousness with behavior that resembles being intoxicated including issues with speech or an inability to focus and a blood sugar below 20 likely to be fatal. That is why you should always carry some fruit snacks/candy/juice anywhere you go and why you alone are responsible for monitoring your blood sugar. Injecting too much insulin or insulin in combination with any alcohol use, exercise/activity and other factors like sleep quality, temperature, and mood all factor into hypoglycemic events. Hyperglycemia, blood sugar over 180 makes you more likely to have complications like kidney problems, circulation problems, stroke, cardiac events, incontinence among other issues is highly correlated to the amount of time you are out of range, so if your blood sugar is always above 180 you have a clinically significantly higher chance of suffering complications or a shortened life span. So your willingness to become aware of your body and what it needs and following through on that becomes a major part of how you survive the loss of a fully functional pancreas.
After hearing this the very next thing I wish someone had told me is that they make an injection that is kind of like an epi-pen but for blood sugar. Even if you aren’t feeling 100% if you can use it you can raise your blood sugar by at least 50 but likely 100 within less than a minute which can be life saving. Your regular physician can prescribe it- it is called a Gvoke pen. You don’t have to wait to use it to refill it so you can keep a pen by your bed and another in purse. The Gvoke is like insulin in that it cannot be left without climate control because sustained temperatures can make it go bad. A gvoke pen is appropriate when your low blood sugar event comes on very quickly before you realistically have time to consume any glucose and want to remain coherent to make your following decisions about what to do about your blood sugar. A low blood sugar event can feel scary but you can minimize how long it feels scary easily by carrying a gvoke pen around. Because you will need to carry your injectable insulin or your pump with you as well you will rethink the way you dress and accessories you have (purses, fanny packs).
Insulin can be impacted by temperature, it is more comfortable to inject room temperature insulin. Insulin not yet opened should be stored in your refrigerator above freezing to keep it longer. As an insulin dependent diabetic you have two options: manual injections you give yourself each day with or without continuous glucose monitoring, or an insulin pump which also requires continuous glucose monitoring. Most continuous glucose monitors are changed once every 10-14 days and connect to an android or apple phone I have yet to be on a pump and I have spoken to many Type 1 Diabetics who have had the disease 20 plus years and all have acknowledged there are appropriate times for a pump and sometimes manual injections is a better option depending on your lifestyle.
After knowing that I wish someone had explained about what it is like using continuous glucose monitoring, at least initially to get a better gauge on what your patterns are and how you react to certain foods. Generally you have to insert your continuous glucose monitor (CGM) every 10-14 days and then can hook up to either an independent device that you must keep charged and within 35 feet of you or you can connect using an android or apple phone and set alarms using an app. It helps show you in real time the way your decisions about your diet, hydration, alcohol use, exercise, sleep habits, and consistency in taking your medication all work together to help you feel more normal. I used a finger stick 4-6 times a day for a few weeks prior to using a CGM and found it much more difficult to have to stick myself so many times a day and not be able to tell if what I did next was making things better or worse without having to stick again. I have used both the Libre 2 and the Dexcom 7 and there are pros and cons for both. I use a overpatch I purchase from another diabetic because my skin doesn’t get irritated by it compared to the overpatch provided in the box of my dexcom, I never had irritation with the libre 2 unless I had to remove it early because of failure because it stuck so harshly- if it is too stuck you can use bandage and adhesive remover made by goo gone. It works very well. As a diabetic you will heal slower so it is important to follow a good skincare regimen and to inspect yourself for cuts and scrapes to keep clean to avoid infections. I recommend finding the liquid adhesive bandage with lidocaine made by Bactine called Bactine Max and have it handy as well as practice good skin hygiene.
There is a company called Risely Healthcare that offers coaching for Type 1 Diabetics. They have a 12 part video series you can purchase along with a 90 minute one on one call with a diabetic coach that can really provide a lot of useful information during the adjustment period. They explain the 14 variable factors that can impact blood sugar and give some solid advice about how to navigate daily life. They have a $3500 more in depth coaching program I could not afford but could be valuable if you are on a pump. The video series was about $800ish dollars and was overall worth the time it saved since I had no diabetic education covered by insurance. You can take the route of self education using books and youtube videos as well. Chances are you will need to do a lot of self education because diabetes is complicated and unique to each individual. Risely offers assistance to bridge the gap of knowledge but it is a bit pricey. https://www.riselyhealth.com/
You can contact your insurance to see if you qualify for speaking to a Diabetic Educator. There are some Diabetic Educators that fall under mental health service professionals and you might get coverage in that way.
You can eat whatever you want but you have to quickly accept that some foods are much more challenging to dose insulin for than others. There are some foods that will cause such a high jump in blood sugar or require so much insulin you may have to consider reevaluating your relationship to that food and how often you can indulge in consuming it. This also goes for ‘healthy’ foods like fruit, baked sweet potatoes, or pretzels. Over time you can also be mindful about how your fat or protein intake is impacting your insulin needs/resistance as well. As a type one diabetic you have to figure out based on all your factors what carb ratio you want to use for each unit of insulin injected, some people use 1 unit of Bolus/fast acting insulin for every 10 net carbs while others might need 1 unit of Bolus/fast acting insulin for every 8 net carbs consumed. That number is individual to where you are on your journey and is affected by many factors. In addition to fast acting insulin and food you will need a certain amount of basal insulin every day no matter what you eat, basal insulin is like your baseline insulin that makes sure you can breathe and move around at a base level. Figuring out your basal dose, and your bolus ratio is something you will always be fine tuning to optimize.
There is likely a support group. You can go to Breakthrough T1D formerly JDRF and look on their website for local adult diabetic groups that have meet ups. It can be helpful to meet another type one diabetic because they understand things other people won’t understand and can give a sense of community. If available it is worth checking out to see if it helps you on your journey. https://www.breakthrought1d.org/
Start meditating/praying/journaling or doing something to tend your mental health each day. There is a very high rate of depression and anxiety across all forms of diabetes. And many times people with high blood sugars can have issues with anger, anxiety, stress, poor concentration, and fatigue with other potential effects on mood. Doing something proactively each day to keep yourself in a good mental outlook is going to be critical in the long run for managing your own reactions to navigating this disease. You can not expect friends and family to always allow you to behave in a way that goes emotionally unchecked, learn to be humble and be quick to apologize when appropriate. Diabetic rage is a thing that you should work to avoid and finding joy on the journey is always going to make it an easier path.
Know that there is nothing you could have done differently to explain why you got this specific disease at this specific time in your life but it happened and you can decide how you respond to it. You alone are responsible for the management of your disease but you can get support from the people you live with. If you get a CGM you can order a Sugar Pixel from customtypeone.com and set a few up in your most common areas of your space. It allows you and the people you are with see your blood sugar so that if you have a major low the other person can see and hopefully prior to it happening be told how to bring you glucose or a gvoke pen or maybe also familiarizing themselves with how to use it should you become incapacitated. I know that sounds intense but if you ever make a mistake with your insulin it can be life saving. You can manage this disease, it will be work but it is possible. And every once in awhile even if you do everything right you will still go high or have an unexplainable low and that is just part of the journey. Absolutely no type one diabetic is in range 100% of the time. So don’t chase total perfection all the time, try to be at least 80% in range at least 80% of the time and if you exceed that, awesome and if you are way below that maybe try more education and using a CGM to fine tune. Even if you completely ignore your disease when you go to your endocrinologist for your appointment to get more insulin they will know how much time in range you are based on your A1C levels so they may be able to offer more resources but this gives you a headstart for success I hope. Take care.
Thank you so much for taking the time to read this blog post. I hope to share more soon.