Everything diabetes

“If you want to go quickly, go alone. If you want to go far, go together.” This African proverb is one of my favorite lines of all times. It holds more power and relevance for me now that I am a part of this awesome community of diabetics.

This community, which is so diverse yet connects at a deep level of empathy for each other because we are all sailing in the same boat, is the biggest asset that my diagnosis has endowed upon me.

I have met some amazing people at my endocrinologist’s office. It’s great how diabetes is the binding factor that brings all of us together transcending the barriers of age, gender, nationality etc. One such T1 kid who managed to hold my heart right from the first day I met him is Rudra. This 9 year old boy has the most infectious laughter that can be. I first met Rudra over 2.5 years ago at my endocrinologist's office.  His mother is one of my favorite people that T1D has got me acquainted with. Until now I would only meet Rudra and his mom at the support group meetings at my endo’s office. So when Rudra’s mom, Meetu Di invited me for lunch one day, I was delighted (mostly because Rudra’s younger sister, Manya is the cutest kid. She is a chatterbox, like me and needless to say, I was so excited to spend time with Rudra and her).

Manya is such a delight ! She was obsessed with my bag that day and got a ton of pictures clicked with it :) Such a poser :)

With no set agenda or plan, I was looking forward to letting two kiddos plan my day (easiest thing to do since I anyway hate adulting in general). As I reached Rudra’s place, Manya welcomed me with the warmest hug and Rudra’s bright smile made me realize what a fun day I was going to have. These two kids are absolutely tech savvy and as soon as I settled in, we played a lot of phone games and I lost almost all of them! It was the day of Ashtami and we had all hogged on puri, chana and halwa in the morning. Thus we anticipated raised BG levels in pre-lunch readings because we had both over eaten at breakfast. While I am using a Libre, Rudra isn't. So we decided to do a normal BG test. Rudra hates checking his BG levels, so to encourage him, we made a little game out of it, we both guessed our BG  before actually testing and the one whose guess was closest to the actual won. I won this unlike the phone games which both the kids beat me at, hands down. Since we both had a high carb breakfast in morning and if any correction dose was required then it was to be taken accordingly.  Rudra’s BG levels were alarmingly high at a 490 mg/dl and we discussed and tried to figure what went wrong since he had calculated and taken bolus dose for breakfast. Another reason for his BG levels could have been that the insulin wasn’t delivered due to lipohypertrophy. For lunch he took a correction dose and changed the injection site from stomach to thighs.

Meetu di had cooked a scrumptious and mouth-watering meal. Manya and Rudra wanted to have the carby noodles and poha out of everything else that was on the table. But with such high pre meal levels, despite having taken a correction dose, poha and noodles would have spiked post meal BG easily, so portion control was the need of the hour according to his mom. Of course, Rudra didn’t take too well to it, but that’s the challenge that every caregiver of a T1D faces and Meetu di did a fab job at explaining to Rudra why he can or not eat something at a particular time. At this point, I was reminded of how my perspectives of T1D management and Rudra’s are different perhaps because of the different ages at which we were diagnosed (I was diagnosed with adult onset T1). He doesn't understand the long term implications of uncontrolled diabetes.  

This was so yummy! 

An easy step in the direction of better blood sugar management to avoid huge spikes and drops is to follow the Law of Small Numbers which talks about less carbohydrate - less insulin - less errors

As we ate and conversations flowed, I got around to talking to Meetu di while the kids were glued to the TV screen. While I knew of the disturbed marital and family dynamics that Rudra’s father and Meetu di have, I didn’t know the details. But that day, she told me in detail of how life had panned out for them since Rudra’s diagnosis in May 2012.

It was an unpleasant marriage for her from the word go but Rudra’s diagnosis was the final nail in the coffin. His father refused to help monetarily for Rudra’s diabetic supplies. In fact he refused to even stay with them after Rudra was diagnosed.

That was not the end of problems for Meetu di, rather it was the beginning of a very turbulent phase that has continued till date. Having been denied adequate monetary help from her in laws, she reached out to her parents and brother who stepped up and helped her with Rudra's diabetic supplies and the kids' school fees and other expenses. She was also falsely slapped with a court case by her father in law to vacate her home. She has been lucky that the legal authorities have helped her so far but she doesn’t know for how long. Unfortunately, Rudra lost his maternal grandmother in January this year and Meetu di has been worried about the expenses since then. But she was very optimistic of being able to provide the best life for her kids.

Her grit, optimism and belief of a better future for her kids is infectious and at that moment, I took in a lot of the positivity myself!
Such a happy bunch !
Meetu di's love for her kids has been captured aptly here <3

It’s said when God closes one door, he opens several others. While life has forced Meetu di to walk some very difficult paths, help was always around the corner for her. Besides help from her parents and brother, Rudra’s school authorities have been very supportive. Ever so often, at least in India, we hear about how schools refuse to take care of a T1D student because they don’t want to take the “additional responsibility”. However, Rudra’s school principal is extremely invested in making sure his sister and him get the education they deserve. The school authorities also do a great job at monitoring his diabetes while his mother is always a call away, in case of emergency.

Rudra being awarded at school 

Our endo, Dr Beena Bansal and the support group she runs, SAKSHAM has been a great help for Rudra.  I have time and again realized that I have been fortunate enough to afford insulin and my diabetic supplies. Even when I decided to take a break from work and do my Masters, my parents paid for my insulin because I didn’t have those kind of savings, but every single time I meet somebody who is unable to access insulin or diabetic supplies easily I am reminded of how this necessity is actually a privilege.  SAKSHAM has occasionally helped Meetu di whenever she has been unable to afford the insulin or diabetic supplies for Rudra on her own. There is a trending hashtag called #Insulin4all started by T1International that is working on making insulin accessible for everybody in need of it. It is sad but true that there are people in our country who are unable to access insulin because they lack funds or adequate healthcare policies that make insulin affordable for all. India has no defined healthcare policies that address this issue and hence many more children like Rudra are unable to access insulin easily. This demands an immediate change and I hope it comes soon.

This was such a gut wrenching conversation for me. But I took away so much positivity after listening to Meetu di.

As the evening came along and the sun was about to set, Rudra wanted to go out and play. We checked our post meal readings and set off to a nearby park. As soon as we reached, Rudra and Manya became one with the crowd of children out to play. From there I bid good bye to them.

Checking our post lunch BG levels.
Rudra and Manya are all smiles as they took to the swings!

I am so glad that I decided to spend the day with Rudra, Meetu di and Manya because I smiled the entire time on my way back home.

Living with type 1 diabetes is A LOT OF WORK.

On most days, I don’t think about it. They say it takes 21 days for something to become a habit. I have spent almost half a decade doing this, so it’s almost second nature now. But some conversations make you sit up and take notice. There is an entire community out there that lives with faulty pancreas and yet this disease/disorder impacts lives in different ways for different people. When you meet warriors like Rudra and his mom, you take in all the positivity, grit and the LOVE!

And  that evening I knew, irrespective of age, I had made a new friend for life!

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