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I Don’t Want To Feel Invisible With Type 1 Diabetes Anymore

I Don’t Want To Feel Invisible With Type 1 Diabetes Anymore

I Don't Want To Feel Invisible With Type 1 Diabetes Anymore

From the moment I was diagnosed with Type 1 Diabetes, my whole life changed. In more ways, than I could have ever imagined.

I had to start developing new habits, ways of thinking, and become stronger than I’ve ever thought imaginable. While the days continue to pass and change, so does my diabetes.

But the more I try to adapt to living with this disease, the more I realize that I have to adapt to the world around me. The world that is unaware or doesn’t understand Type 1 Diabetes.

I could walk in a room with a smile on my face, but deep down I could be struggling with my diabetes that day. No one would ever know unless I spoke openly about it. But even then most people wouldn’t pay much mind to it. I feel invisible with diabetes. While I’m present, this huge part of my life is not seen. It can’t be explained, understood, seen, or felt.

Diabetes is like living in a prison confined by social stigma and misconceptions.

I’ve experienced and dealt with many life-threatening situations. It’s made me face reality and realize how fragile life is and how easily it can be taken away. I can’t run, hide, or neglect it. It’ll always catch up to me.

There’s no perfection with this disease. It’s just a human fighting to survive every day and continuing to beat the odds. While diabetes is constant, the variables presented every day is not.

Diabetes is like Einstein’s insanity quote about expecting different results. But instead, diabetes is doing the same thing over and over again and expecting the same results.

I hear “if you change your diet, exercise, or lose weight your diabetes will be in better control”. With all good intentions put forth, Type 1 Diabetes is complex and can not be simplified. It’s forever.

“At least your alive and it’s not cancer”. “If you eat so and so I hear it will help your disease”. “There’s a cure out there for it”.

Instead of finding some compassion and empathy, there’s judgement and scrutiny. For a disease that I never asked for. One that leaves me in tears, where I beg on certain days for things to go right, where I don’t have to think so much and fear the unknown.

I don’t want to feel invisible with Type 1 Diabetes anymore. 

I want others to understand how complicated Type 1 Diabetes truly is. That as manageable it can be, it’s just as deadly. Insulin is not a cure, and it only keeps us alive until there is a cure. That we need everyone’s help and support in finding a cure.

Our voices matter, our lives matter, and a cure for Type 1 Diabetes matters.

The Truth Behind My Encounter With Diabetic Ketoacidosis

The Truth Behind My Encounter With Diabetic Ketoacidosis

The Truth Behind My Encounter With Diabetic Ketoacidosis

The Truth Behind My Encounter

With Diabetic Ketoacidosis:

(A day like any other, can turn into a day you’ll never forget)

With diabetes comes the good and the bad. When it’s good, it can be REALLY good. But when it’s bad…it can be life-threatening.

I’ve certainly had my share of bad days. Trying to battle the high and the lows, and trying to stay as close to normal without losing my sanity.

With having diabetes I’ve experienced many symptoms. But one day came symptoms like no other…

chills – nausea – vomiting – back pain – weakness – blurred vision

… and lots of ketones

Yes, you’ve guessed it! I had DKA (Diabetic Ketoacidosis)

This was years ago, after a night of drinking with friends. Wanting to live a free, independent young adult life. Knowing, yet not knowing how destructive being the slightest bit careless could affect my diabetes.

I just felt terrible. To the point where I questioned where to take insulin or not. I thought to myself … Well I don’t really plan on eating today, and I don’t want to worry about dropping “low”. I thought I was saving myself from having to fix my blood sugar.

So I missed my morning dose…

(Boy, was that a mistake – NEVER – would I do this again)

I didn’t know at the time that insulin is needed (with or without food). Even on sick days! Without enough insulin in my body, my body can’t receive the glucose necessary for energy.

I kept close eyes on my blood sugar for a few hours that day, which was only in the mid 200’s. I thought that due to the fact I wasn’t eating, that my blood sugar would come down eventually anyways.

But the symptoms progressed. I couldn’t keep anything down … not even water. To be honest, DKA never came to mind. Never had it since being diagnosed, and was most recently been keeping my blood sugars in better control. I finally got to the point where I had to go to the emergency room. I knew something was off. I’ve never felt this sick in my entire life.

Upon getting there, the doctors ran several tests. My boyfriend met me there, very frantic and confused about what was going on. The test came back that confirmed that I had Diabetic Ketoacidosis (DKA), which showed that the chemistry in my body was thrown off.

I’ve never been admitted for DKA before. So I didn’t know what to expect. I was sent up to the ICU (Intensive Care Unit). This was serious. I was told that I was lucky I caught it early on.

This comes as such a surprise, because I had tighter control over my blood sugars and diabetes than years previous. At this time, I was averaging an A1C of a 6.5-7. This just goes to show you how quickly things can turn sour with diabetes. You’re never “out of the woods” with diabetes. Each day is different from the last.

Diabetes is so unpredictable, demanding, and can be life-threatening. 

Upon being placed in the ICU, I received an IV and was on an insulin drip. My body was so weak, I needed help when using the restroom. Diabetic Ketoacidosis completely disabled my bodily functions.

While I could have avoided this, and have made better decisions. I did learn from this experience. How I could prevent this from happening in the future. Knowing my limits and being more cautious.

It’s unfortunate that I had to learn the hard way. I had to be reminded of the severity of this disease. While I can still live a normal life, there’s sacrifices to be made, and extra work to be done.

Like they say “what doesn’t kill you makes you stronger“. I’m just glad I’m here to share my insight and experience.

Diabetes tests your will power and your ability to rise above it all. I’ve learned that diabetes doesn’t take sick days. Diabetes doesn’t care about your plans, how your feeling, or what you’d rather be doing. It’s always going to be there, morning and night.

I am thankful and appreciative for St. Joseph’s Hospital, for donating and covering my hospital stay when I had no insurance. For that hospital, those doctors, and nurses helped me recover and return to full functioning health.

The truth is…while diabetes has opened my eyes to a world full of challenges…it’s made me the strong person I am today. So for that I’m grateful.

Insulin To Live

It’s crazy knowing that without insulin, I couldn’t survive. Insulin is a necessity of my life. It’s not a medication that’s used to help alleviate symptoms or help aid a temporary situation. I need insulin to live. Period. For the rest of my life.

 

Most recently I have been blessed with awesome insurance through my husband’s job that covers all my medication. My insulin – test strips – and pump supplies. I’m beyond grateful for insurance that covers me, because I know what’s it’s like to be “without“.

It’s a terrible feeling not knowing how you’re going to afford to manage your diabetes.

When I was the age of 20 I was dropped from my family’s insurance. I was left to fend for myself basically. I was working a minimum wage job barely making ends meet. My boyfriend at the time would help me scrounge up money to afford the basics. Which I obviously needed insulin and the most generic form of testing supplies.

Now if you’ve actually had to pay out-of-pocket. You would know the ridiculous amount of money it costs to purchase insulin even with insurance. Without insurance it can cost anywhere between $100-400 per vial, depending on where you go and the brand of insulin. The three insulin manufacturers — Sanofi, Novo Nordisk and Eli Lilly keep continuing to raise these prices, claiming it’s due to innovation and production. But the price increases with no generic forms, leave people with diabetes to have no choice but to pay the price.

But really, how could you go without?

I cringe at the thought of spending $100+ on just one vial of insulin. Even with the possibility of wasted insulin or just dropping it accidentally on the floor (which I’ve done). This is a crisis that desperately needs to be addressed.

I applied for Medicaid considering my income. I was denied – I’m assuming because I was “single and working”. But I don’t think they took in consideration my health. I also looked into Medicare or Disability, or anything. All of which were denied…

Then I researched some more and come across resources from the pharmaceutical companies and varias others who offer assistance:

*Most of these programs require that you are a US citizen*

Lilly Cares which offers patient assistance to obtain medications you need. In order to get assistance, you must fill out an enrollment form and get it signed by your physician. They offer medications such as Humalog and Humulin. Once approved, they mail your physician your medication and you are effective for a year. You can see here for eligibility guidelines.

1-800-545-6962.

Sanofi-Aventis is another good assistance program. They offer medications such as Lantus for diabetes management.

1-888-847-4877

Novo Nordisk offers medication such as Novolog and Novolin.

1-866-310-7549

These are all great assistance programs. I thought I would list the most familiar medication pertaining to each company because it took me awhile to figure it out. But if you go to each site, they give a detailed list of all the medications that they offer and the eligibility requirements.

I used Together RX for savings on my testing supplies. They give you your own personal card to show with a prescription at your pharmacy.

I also benefited from BD assistance program for my insulin syringes.

Now there are many groups online that can be of assistance

All of these resources helped me manage my diabetes, during times of financial difficulties.

You should never have to go a day worrying about how you’ll be able to take your insulin – check your blood sugar – or live the best quality of life possible


Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.