After the ‘Why’ here you come the ‘What?!?’

When Wonder Sugar has to figure out which was the best way for her to manage LADA ...

Wonder Sugar's feeling during the 'What?' Stage 😉


Hello Wonder Friends!


The last post was about the ’Why me?’ Which actually translated in what is LADA and the difference between autoimmune diseases and life style diseases.

This post is about the journey I went (still going) through to figure out which diabetes management approach makes me feel more comfortable and that I can sustain on a long-term basis.

I’m contributing to the roller-coaster because I’m keen to understand not only how to manage the blood sugar levels but I’m also trying to understand deeply what are the main causes of LADA.

The journey is not a linear, simple or clear one. I’m aware that I’m contributing to the roller-coaster because I’m keen to understand not only how to manage the blood sugar levels but I’m also trying to understand deeply what are the main causes of LADA.


You will think it is the same. Not in my opinion.


The medication we are given is meant to manage the symptoms of Diabetes (any type) not to address the cause. I know that diabetes number 1 is not curable yet, as it is an autoimmune disease, and that for now science hasn’t found a way to help the pancreas to regenerate beta cells. But, I also know that even a person with no diabetes will not always need the same amount of insulin: it depends on what they eat. Exactly like me, with the difference being that I have to inject that amount of insulin while their body produces it naturally.


In addition, in the LADA scenario, it is not only genetics, it is also about environment, food and stress level. As said in one of my firsts posts I was diagnosed when, after an extremely stressful period and receiving very bad news, I couldn’t stop spewing… this is the moment that the diabetes showed up. It didn’t come out when I was a kid or when I was living a healthy life. It showed up in the worst period of my life. That should mean something, right?


It [LADA] showed up in the worst period of my life. That should mean something, right?

This is why, while I was still in the hospital, when a family friend, that is also a doctor called to support and provide her views on the diagnosis and the prescribed medications, I heard something that it was simply not for me: learn to count the carbs, get the ‘automatic’ insulin pump and the blood sugar machine and KEEP LIVING YOUR LIFE AS YOU DID ‘TILL NOW…Her approach is probably the most traditional and commonly used one. It is not wrong, it is just not for me.


My reaction to that was ‘ What?!?! Shall I keep living the same way I did till now???? That’s exactly why I’m in ICU! I don’t care if I can’t eat the same way, I don’t care if I need to be strict on my lifestyle, I do not want a machine to pump medication in my body without me fully understanding why and how much and the reason behind it.’


That’s why I choose to stay with Doc. P., because even if he provided me with insulin injections and meds that ensured the same level of coverage that the traditional way was going to give me, he also enabled me to keep control over it and make informed decisions.


Because I manually inject the insulin, when I want to cheat on my food regime I’m forced to question my own decision… is this Pizza really worth it?.. is it worth the extra insulin? Do I really want a Basket Robbins ice cream or maybe I could control my craving by having frozen yogurt? If I make my own granola, bread, pasta or sauce I can enjoy the same taste (if not better sometimes 🤓😎) and in the meantime reduce massively the sugar/carb content of it (not to mention the absence of preservatives)…


I’m not saying this is the absolute right way, but this is the right way for me.


Even if probably will bring many of you to criticize my approach I want to tell you another story which made me think a lot about the American health care system. Last year this time I flew to the USA for a vacation but also to get a 3rd/4th opinion on my health status and medication.


I felt extremely lucky because my aunt managed to send my medical records to a very good doctor at a very famous University. I was excited! But then, in less than 24 hours, without even seeing me in person, the doctor made strong statements on my diagnosis and on my medication pattern. In her opinion everything was wrong; Diabetes 1.5 (or LADA) does not exist……in her opinion, the only solution was…. Guess what???


Put the Pump! This is a standard reply. As a patient I felt treated like a number. We all have different stories, different backgrounds, different DNAs and body response. Why do I deserve a standard reply?

We all have different stories, different backgrounds, different DNAs and body response. Why do I deserve a standard reply?

I asked to meet the doctor and she was so nice to come and see me for a coffee/walk with her dog 😍. I will never forget that kindness, she had the best intentions as she didn’t charge me for anything. We had a very nice walk early in the morning in San Francisco (that’s why the pics!) and we had a very instructive conversation. I need to be honest I asked her a lot of questions, such as:


1- If Diabetes number 1 causes a very low or no production of insulin and based of my last labs I’m producing quite a bit of it (reduced amount but still a good amount) how is it that you define me Diabetic #1?

She explained me patiently and very clearly that I’m living what is called the ‘Honey moon period’ (for a definition of the honey moon period please see the Glossary) which was going to end eventually.


2- So then I asked her when the honey moon period was going to end and if there were statistics on the length of it.

She explained me that can vary from person to person and it can go from very short term - DAYS- to longer terms - YEARS.


3- I then asked how could I help my body to extend the honey moon period.

She couldn’t provide a fully approved answer as unfortunately there is no answer to that yet, but basically she said eat clean, exercise, reduce your BMI and that could help.


When she told me that I immediately thought… if eating well, exercise and proper BMI could (maybe, even if there is only a super minimal chance) help to prolong the Honey Moon Period then why the doctors do not push for a healthy lifestyle when you get diagnosed? Why do they tell us to leave our life as usual as long as we make sure we get the right amount of medication?


I’m more than sure that this is done with the best of intentions. It might be related also to the psychological reaction to the news that each person may have as a consequence of a lifelong illness. Maybe the medical system noticed that people react better if they understand that although the condition will not disappear, we are still able to maintain our lifestyle as it is. But still I’m not comfortable with this. To me this is like a contradiction in terms.


In my specific case, if I kept the identical lifestyle (type of food, stress level, sleeping patterns etc) there was no amount of insulin that could have given me steady blood sugar levels.


And I proved it to myself; when I get highly stressed or emotionally down, my blood sugar is unstable even if I had clean food and exercised; if I cheat on my diet (of course with the right amount of insulin injected) I will have to deal with some sort of a snowball effect… so the key for me is to initiate and maintain a full change in lifestyle.


And that’s why the right ‘WHAT TO DO’ for me is:


1- EAT CLEAN: a lot of vegetables, protein and also carbs if I want…

2- If I eat carbs I make them myself, with no preservatives or un-pronounceable extra ingredients. I also make sure I do not use sugar

3- EXERCISE…this is a work in progress as I must admit I’m not very consistent

4- Keep my stress and emotions under control through meditation/reading or anything else that can make me happy (last week I focused on getting tanned as I know that makes me feel superrrrr GOOD)


I’m sure that my WHAT TO DO may not work for everybody, but what’s the harm to try to eat well and balanced? Why get medications that we could avoid (in a safe manner and with doctor supervision)? Why did I have to face a nutritionist that presented me a diet plan based on the AVERAGE insulin injection the doctor prescribed (remember that the prescriptions are mainly to ensure we get the medication we need from the pharmacy) instead of designing a meal plan that is healthy and can help me to get to my ideal BMI?? Basically, the nutrionist said I need to take more calories (and carbs) to make sure I can inject the ‘right’ amount of insulin… interesting, I thought it was the other way around…you get the right amount of insulin for the meal you are having which is what a super healthy pancreas will do…


LESSON LEARNED?


I feel this will be always a work in progress… I may change my mind with time because of the challenges but as of now I’m happy to put the effort and do what I should have done in the first place: love myself by taking care of my physical health even if that means no ice cream 😩

Ciao Ciao

Jasmine


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