One of the Lucky Ones: A Timely Diabetes Diagnosis

This content originally appeared on Beyond Type 1. Republished with permission.

By Mila Ferrer

How It Happened

Fourteen years ago, my youngest son was diagnosed with type 1 diabetes. He had all the classic symptoms. But neither my husband nor I knew that all the signs my son showed meant that our lives would change drastically very soon. I am pretty observant and I did notice that my son was urinating more frequently, but I thought it was just a urinary tract infection. Fortunately, my son’s pediatrician at that time was a friend of the family, and on top of that, her sister has lived with type 1 diabetes since she was little, so she had personal experience with it. I took the liberty of calling her doctor on her cell phone while she was on vacation, and thankfully, she answered the call right away.

When I told her about the symptoms my son had, she immediately said, “I hope I am wrong, but he has all the symptoms of type 1 diabetes. As soon as the pediatric emergency clinic opens, take him in and ask for a blood sugar test. Call me when you have the results.” I was skeptical and baffled, and I told my husband what the doctor had said; I went online to read about type 1 diabetes, but I still did not think that would be the diagnosis.

As soon as the emergency clinic opened, we took Jaime in, we discussed the symptoms with them, and told them about my conversation with the pediatrician. They checked his blood glucose level, and indeed the correct diagnosis was type 1 diabetes.

Kid

Image source: Beyond Type 1

The instructions were very straight forward: “You have one hour to go home and get the necessary clothing for a safe hospitalization.” We left the urgent care with a referral to the pediatric hospital, with our hearts pounding out of our chests and thousands of questions. Jaime was seen by the doctor quickly once we got to the hospital. The next day, we started diabetes education, and two days later, we went home.

Counting Our Blessings

Although my son’s diagnosis was surprising, I confess it was not traumatic, and although we had doubts and fears, we were able to resume our new life quite quickly. That experience led me to believe that all type 1 diabetes diagnoses in children were like ours. What I did not know is that that was very far from reality. I assumed that all primary physicians could identify the symptoms and begin the necessary treatment and education to stabilize the patient’s glucose.

The sad reality is that I was very wrong and once I joined the online diabetes community, I learned about the stories of misdiagnosis. I could not believe it! From that moment on, I could not help but thank my son’s pediatrician for sounding the alarm and telling us what steps we needed to follow. From that moment on, whenever I had the opportunity to educate others about the symptoms of type 1 diabetes, I did not hesitate to do so. As parents, we know the signs of many common illnesses and can quickly identify them, but I had never heard of type 1 diabetes symptoms.

That is why I am so passionate and why I value Beyond Type 1’s Warning Signs Awareness Campaign so much, as it seeks to help identify new type 1 diabetes diagnoses and prevent diabetic ketoacidosis (DKA) from occurring. I feel very fortunate that my son was not in DKA and that his diagnosis had no complications.

Even if type 1 diabetes has already reached your home, I want to invite you to help us by educating your friends and family. We must be observant, educated, and proactive parents, and if the symptoms of type 1 diabetes show up at any time, it is necessary to seek medical help right away. If your story is like mine, you should feel fortunate and be thankful to the healthcare professional, friend or whoever guided you. Join our efforts, share the #T1DWarningSigns and let’s prevent misdiagnosis or missed diagnoses from putting the lives of others at risk.

Learn more about our Warning Signs Awareness Campaign and help prevent missed diagnoses and incidences of DKA at diagnosis. Want to get involved now? Sign up to receive a free awareness kit here.

Source: diabetesdaily.com

Diabetes Complications: How They Affected My Body

I have a list of excuses as to why my diabetes was never really properly controlled. At 24 years old, I was diagnosed, but I was treated as a type 2. My doctor based it on my age. For 2 years that I was treated as a type 2, my sugars were never coming down, and my doctor kept upping my dosages until I was taking over 20 pills a day. I had tried a couple of different doctors through my insurance, but with no result. Finally, I went to see a highly rated endocrinologist, whom I had to pay out of pocket. At 26, I didn’t exactly have the funds to do so. I was properly diagnosed by this doctor, but unfortunately, couldn’t keep seeing him at such a high cost.

Recently, through type 1 (T1) meetup groups and social media, I see many young women, men too, who’ve been diagnosed in their twenties. There really isn’t any time in someone’s life that’s a great time to be diagnosed, but for me, and I’m assuming many others, your twenties can be difficult for so many reasons. You’re suddenly on your own health insurance. Your parents are no longer in control of it, and I’m sure, like me, you don’t want them to be! In your twenties, you’re invincible! Your life is yours, your decisions are yours, you feel like everything is yours.

Suddenly the doctors are telling you, “You can’t do this, you can’t have that,” and that diabetes will affect other aspects of your life, your health. But I wasn’t told specifically, all the things. For me, it started to feel like the doctors were in some conspiracy to take all (and more) of the money I made. I couldn’t afford diabetes.

Go to the dentist for a cleaning, I’m told I should be going every 3 months. I didn’t have dental insurance, and I always had great teeth. Never had a cavity, why do I need to worry now?

Quickly I became frustrated. Another endo, who had come highly recommended, did accept my insurance, so I vowed to take better care of myself. And then he started selling me bars and shakes, thought I needed to lose weight (I weighed 138 lbs., I’m 5’7” – not exactly overweight). I tried for a while but realized it was a lifestyle I could never keep up with, and he obviously had ulterior motives.

I felt that if the people who were “supposed” to be helping and supporting me didn’t care, why should I? Well now I wish I did, I wish I had understood all of the “little” complications, some of which are discussed, and some that aren’t as much.

I see young women on social media, who have changed their ways (and I applaud them), but I know there are many who suffer from diabulimia. You’re young, you’ve lost all this weight, you suddenly can wear anything you want, it seems like there’s at least one benefit of this illness. And there are those who have fallen into a depression, have lost hope, and just don’t care for themselves properly.

My sugars were always a little high, but I never (knowingly) missed a shot. My A1c typically ran in the 9% range. Definitely not near where it should be, but I see people who’ve run 13-14%, just to remain slim.

Gums and Teeth

First, it started with my gums. While I was still in my twenties,  I sliced them, just on a potato chip. Crazy! Usually, if that happened, it would heal, almost immediately. Not this time. This time, I got an infection. Gum disease isn’t pretty, especially when your mouth is constantly infected. Infections can raise glucose levels, and raised glucose levels can exacerbate infections. Round and round it goes. And this doesn’t happen overnight.

Nothing really ever went wrong until I hit 40. Even though through my thirties, I had surgeries and saw a periodontist every three months; eventually my gums just weren’t strong enough to keep my teeth in place. But at 20-something, who thinks they’re going to lose their teeth? I was someone who was always known for smiling. I have one of the biggest, cheesiest grins. But suddenly, I lost it, five teeth, and a lot of bone to go with it. Dental implants? Well, aside from being expensive, I need sinus lifts just to ensure the implants take hold.

Frozen Shoulder

What almost seemed out of the blue, I suddenly could not move my shoulder. It didn’t happen overnight, so at first, I thought maybe I was just sleeping funny. But then, I couldn’t raise my arm, even a little. Of course, it was my left shoulder, as I’m left hand dominant (Murphy’s law, right?). I hadn’t heard of this, but it was debilitating. When you can’t move your shoulder, raise your arm – showering, getting dressed, every basic thing becomes nearly impossible to do. I went for an MRI, physical therapy…and this went on for months. It finally subsided, but for months, I couldn’t get dressed, or undressed, without help. For someone who has always been active, lifted weights, this was frustrating, depressing, completely debilitating.

Diabetic Gastroparesis

My sugars definitely got a little out of control when I took a second job. I was working constantly, my part-time job was at a catering hall, so getting fed properly, and at proper times, became nearly impossible. Checking my sugar? Well, that was out the window too. That’s on me for taking that job, but when you need money, you do what you have to. Until you can’t. I’d be feeling fine, I’d finally eat, and almost immediately, I was nauseous, vomiting, feeling like I was going to die. At first, I just assumed I had a stomach flu. Nothing can really be done, you just have to let those run their course. But then, it was happening every week, two times, then three, until I was driving home from work, less than a 15-minute commute, and I couldn’t even pull my car over, I was just opening my car door and vomiting right out the door, several times.

I couldn’t get an appointment with the doctor, so I was told I could see a nurse. As soon as she took my vitals, she told me I needed to see the doctor, and she immediately set me up for an EKG. Fortunately, my heart is fine. But I do suffer from diabetic gastroparesis. Now that I’m aware, I can properly handle, and though every now and again I have a bout with it, overall, it’s basically under control.

Diabetic Mastopathy

I’m 43 years old, and I finally went for my first mammogram. Yes, I’ve been putting it off, because I’ve been in fear of finding something else wrong with me. I loved my teeth, I’ve lost them. I loved my hair, lost a lot around the time I was diagnosed, and though it did get better, it never was the same. I’ve dealt. But I’ve always felt that whatever else could happen to me, I would never let anyone cut into my breast(s), so the less I knew… I know, irresponsible, and ignorant.

Well, I finally went, and just to my luck, they found a lump. I had to be scheduled for a biopsy right away. To say this was nerve-wracking (even though I know women go through this every day, I’m sure they’re not calm about it either), was an understatement. (The stress also seemed to elevate my blood sugars like I’ve never known) I went for my biopsy, and metal markers were inserted, should I need surgery. I waited, very impatiently, for my results. Fortunately, my doctor called me immediately following the weekend (I went on a Thursday).

Now funny, you would think the doctor would know my medical history, but he didn’t! Thankfully, first, he did say it was benign. I can’t tell you what relief I felt, but then he followed with, “Are you an insulin-dependent diabetic?” What? What does that have to do with anything? Well, apparently, diabetic mastopathy happens to more of than not type 1s, but even types 2s, who are insulin-dependent, and whose glucose levels run higher.

Fortunately, this is not life-threatening. None of what I’ve gone through has been. But I promise you, I would’ve preferred to not have had to endure any of it. Managing diabetes alone can be difficult. There’s no need to add anxiety, fear, cost, insecurity, to an already consuming illness. What I wouldn’t give to have my teeth, the hours spent clinging to the toilet or garbage can, thinking I might die, or the lost months of movement in my shoulder/arm back. I would’ve preferred to never have dealt with the anxiety of knowing metal clips were being inserted. Granted, anything in life can happen to us, whether or not we’re diabetic. People lose teeth, suffer from gastroparesis, lose mobility, or get biopsies, who aren’t diabetic. But if we can help to not exacerbate or trigger the situation by managing our blood sugar levels properly, why wouldn’t we? No matter how skinny you might feel you need to be, if you have no teeth to show your smile, no mobility in your shoulder, how good can you really feel about yourself? At 43, my will to be healthy, to live healthy, is stronger than it ever was.

Source: diabetesdaily.com

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