Everything I Wish Someone Told Me When I Was Diagnosed With Diabetes

Everything I Wish Someone Told Me When I Was Diagnosed With Diabetes

I was diagnosed as a type 1 diabetic rather late in life, 15 years after my twin sister’s diagnosis at the age of 16. My symptoms were mild, largely confined to extreme thirst and fatigue after carbohydrate-laden meals, so I naturally assumed that I was just dehydrated and not sleeping enough. When I couldn’t sleep through the night without getting up several times for water — and my post-meal naps became hours-long, daily occurrences — I decided to meet my mom and sisters for an experimental lunch. Full of bread sticks and cheese pizza, I waited for the exhaustion to kick in, then asked for my sister’s glucometer. Note: if you’re reading this, it is likely that you or a loved one is a PWD (person with diabetes), so you are also likely to know what a normal blood glucose reading should be.

That day, my bgl was over 500 mg/dL (over 27.7 mmol/L), bringing us, dear readers, to my very first wish.

I wish someone had told me that it was okay to be upset, because my life would never be the same.

We checked my blood sugar three times before we decided I should go to the health unit at my University. I didn’t have health insurance at the time, so I knew that someone at the health unit would refer me to the university medical center for treatment. This is precisely what happened, and, several hours later, I was laying in a bed in an emergency room, crying uncontrollably because it was confirmed that I have diabetes. Through my blurry eyes, I noticed that the doctor who had broken the news to me had a confused, almost disgusted look on his face. In hindsight, I suppose I expected him to comfort me. Instead, he actually asked me why I was crying.

Now, there are several things I can think of to explain why I was crying, but, even after all this time, I can clearly remember being upset because I had already lived with a PWD for several years. My twin sister — the only person in the universe who had shared a womb with me — had been hospitalized multiple times for DKA (diabetic ketoacidosis), nearly dying during one of the last episodes.

The fact is, when this seemingly insensitive medical professional told me that I had diabetes, I already knew so much about the disease because my favorite person in the world was barely living — and struggling — with it. Until my own diagnoses, my sister and I had even discussed harvesting my organs for spare parts when hers finally gave out, making me the M’Lynn to her Shelby. Now, while it is possible that this particular doctor had been desensitized after giving the same diagnosis to countless other patients — especially since diabetes is an epidemic in my home state of Louisiana — I still knew enough to be afraid.

I wish someone told me that the numbers don’t really matter, and that I should never apologize for being sick.

My initial endocrinologist visits were dreadful. I was told how lucky I was that my kidneys weren’t damaged, and, though my diet was already healthier than most, my numbers were still high. My doctors were asking me if I really wanted to get my bgl under control. The numbers game had begun.

The instant a PWD is diagnosed, every waking moment suddenly revolves around a number, and that number becomes one of two things: high or low. The magical number in between the high and low is next to impossible to maintain, especially when your doctor does not initially prescribe insulin. Some of you may note here that insulin is necessary for type 1 diabetics, but don’t bother scratching your heads about why I was prescribed Metformin. I will never understand this, and I cannot explain it. Anyway, for those of you who do not already know, the highs make us feel like complete shit, and the lows make us feel like we could die any minute. So, in order to not feel like death walking, a PWD must try to control (or, my favorite word, manage) a life-threatening disease every single second of our lives, relying on quarterly specialist visits to analyze, question, and criticize — you guessed it — a bunch of numbers.

Lately, I’ve come across several graphic tees and bumper stickers that say things like “I’m greater than my highs and lows” and “I’m sorry for what I said when my blood sugar was low”, and I’ve started to question why these things exist. Yes, as with the Fuck Cancer movement, I’m sure that it can be beneficial to put a spunky spin on a deadly disease, but I should never have to remind my caregivers — or anyone else — that I am more than just a person with a disease. I should also never have to apologize for the highs and lows, because they are often hard as hell to control. I wish I knew from the beginning that I deserve better. Most days, all I can do is manage my disease, but now I know that managing is enough.

I wish someone told me about free samples, supply representatives, dia-buddies, supply rationing, and coupons.

There is no shortage of stories in the news about diabetics who die because they were forced to ration their insulin. Yes, we should have access to the insulin we need, but sometimes that just doesn’t happen. I wish someone told me when I was first diagnosed that it is okay to ask my doctor for insulin. Most endocrinologists have vials, pens, needles, glucometers, test strips, as well as pump and CGM supplies, provided by individual representatives from the manufacturers. I never leave an appointment without free insulin, and this has saved my life.

I learned the hard way that it is best to play nice with pump representatives. I was on the OmniPod system for about a year when I began to have allergic reactions to the adhesive on the pods. I started a dialogue with my local rep, and she was able to document everything. Her diligence and awesome record-keeping allowed me to get my insurance company to partially cover the cost of my Tandem pump. Now, thanks to my experience working with the OmniPod rep, I know to call Tandem directly if I have an occlusion. My supplies are replaced pretty quickly (they overnight everything) at no additional cost.

My sister and I are dia-buddies. We share Novolog pens (not needles, of course), and I currently have a box of Lantus pens in my fridge with her name on it. She also has all of my CGM supplies, because I started to have reactions to the Dexcom adhesive, as well. Most recently, I found someone on Twitter to take my unused pods. I’m not asking for any payment or reimbursement, because dia-buddies take care of their own.

Over the last couple of years, I learned how to ration pump supplies. A single box of Tandem cartridges and infusion sets will last about 3 months for me, because I fill my cartridges to maximum capacity (300 units in the Tandem T:Slim) and only change them when they’re empty. Yes, I know that Tandem recommends changing cartridges and infusion sets every 3 days, but 1 full cartridge typically keeps me medicated for about 7. This allows me to waste less insulin, and, since I don’t have to reorder pump supplies as often, I save a shit-ton of money. I have also seen some pump users draw unused insulin out of their cartridges or pods, but, since my insulin is 7 days old when I change my sets, I don’t do this.

I have coupons for my insulin and test strips. I use Novolog, so I never pay more than $25 for my insulin. If anyone uses Humalog, you can also find a coupon here. I’ve had decent insurance for some time now, but I hated paying $40 every month for my test strips, so I have a coupon for those, too. The point is, we should never pay full price — or even copays — for the things we need to live. Also, don’t let your pharmacy tell you that they cannot use your coupon. Trust me, they do not want you to fill elsewhere. My nurses have also threatened to have their reps pop by my pharmacy to “educate” the staff about how to properly apply my coupons. I haven’t had any issues since.

📝 Read this story later in Journal.

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Everything I Wish Someone Told Me When I Was Diagnosed With Diabetes

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