Category: Struggles

We Are Dying For a Cure

We Are Dying For a Cure

We Are Dying For a Cure

By: Eddy Murphy

 

I’ve fought off writing about diabetes in an honest and truthful way for almost fifteen years. I guess it’s taken me that long to come out of a state of denial, becoming more intimate with it than anything I’ve ever been passionate about.

Perhaps my shame is what has gotten the best of me. I never wanted to admit that, by default, I was weaker than everyone else around me. It has taken me this long to realize that I’m stronger than everyone I know.

I’ve hazily confronted death more than fifty times, waking up in a hospital more than once, or coming to my senses watching my mother wince in pain, holding her belly, saying I inadvertently punched her in the gut while in the throes of a hypoglycemic seizure.

We were both soaked in orange juice turning sticky, when whatever sugar made its way into my bloodstream, brought me back from the brink of death. And because of times like these, it has been hard for me to accept my worth as a human being.

I hate drawing insulin out of a syringe, knowing it could be my last.

I hate doing my necessary rituals of survival in front of my friends, backpacking through the mountains of my heart, because, in the moment, everything else is beautiful.

I just want to revel in the earth that is my home, and then I have to confront this ugly thing, grab it by the horns and tell it I’m not going anywhere. Not now. I’m going to live this moment.

There’s this superficial feeling I get, where I am validating myself by taking type 1 diabetes on, thirty miles from nowhere while experiencing the most beautiful places I have ever been. As if I’m doing things most other people are afraid to do, while being at the mercy of the whims of an overpriced drug that I have to love and hate simultaneously. It is a feat to come out of every trip into the mountains unscathed, deflecting a scythe with a smile.

Before, I would have life-altering lows to bring me out of my denial. I would only check my sugars 3 or so times a day, not catching highs until way beyond their reign. And seldom would I realize I was two glucose tabs away from death, getting closely reacquainted with diabetes when my hands began to seize and I couldn’t speak. Thankfully, circumstances have worked in my favor all these years. Someone was there, or I caught the tail end of consciousness before things went too far down.

Now, I’m a man. A man who feels his age and more. I love a woman with every flame left in my soul. I am grateful that someone accepts me for all my shortcomings; more importantly, I am grateful that someone appreciates the enormity of my life’s battle. What a human thing it is to love. It is the music of the human experience and I get to embrace it after all these years of not feeling human anymore.

Consequentially, I feel the need to revel in every moment I spend with this beautiful person. My life has been an imitation of the real thing for fifteen years until now. Love knows no diseases. Because of this, I am even more angrier now than ever before about the ugly greed of the pharmaceutical companies, the FDAs lackadaisical approach to pushing forward a potential cure/cure’s, and the ignorance of the general public to the suffering of 1.2 million people who have been stripped of a future.

I mean this in every sense. 1.2 million people in this country could die at any moment, yet ‘with proper management could live a happy and fulfilling life’.

Because of the requirement of insulin and the perpetuity of type 1 diabetes, it is a cash cow for large pharmaceutical companies and doctors across the country. And if my life ends in tragedy, I can be blamed by citing “improper management”. At least they got their bag of silver, and will still do so as long as this disease remains with a cure and profitable.

So for now, my wallet is being squeezed dry, and I’m being forced to be grateful for just being alive. I have no assets. I will never be able to afford the land in Montana I want. In truth, I am living in what would amount to Great Depression standards of living. And the public doesn’t know or care because the majority of the media attention is given to type 2 diabetes.

No one gives heed to our deadly fight because diabetes as a whole is linked to laziness and poor diet.

In the meantime, all of our non-type 1 friends will continue to make jokes about us shooting up drugs and having too much sugar as a kid. Many in the support community are cute about type 1. “Christmas is a time to be grateful” and “T1D looks like me”. I am not sure if censorship helps the cause. Trying to make others aware of this dangerous disease by dodging the real tragedy of it is what has stunted any real instigation of progress in the type 1 activism culture. Victims cower in the corner, unsure of how to convince the general public of the need for a cure.

The last fifteen years I resigned my unworthiness to type 1 diabetes, and couldn’t fathom the heroics of what I did by walking through the mountains to improve my life. I couldn’t fathom my own significance in educating people about the injustices we face everyday, and the urgency of this moment.

We are dying for a cure.  


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Letter To The Man That Wasn’t There For My Diabetes

I sometimes wish you would call me and ask how my diabetes is doing or if everything is going okay.

Just for a moment; acknowledge my diabetes.

It doesn’t define me but it’s such a huge part of my life and the journey I set out on everyday.

The journey you never joined me on.

I can’t imagine how you felt hearing the news that your daughter was diagnosed with Type 1 Diabetes, an incurable disease.

Thinking to yourself — why me, right?

I asked myself that question too.

But now I ask why couldn’t you ever accept or embrace it?

I needed to hear from you that “everything is going to be okay”.

But I never did and probably never will.

You never had to see me on the floor unconscious, or in a hospital bed with DKA, or up all night crying and praying that this would all go away.

You had it easy.

I thought you were doing me a kind favor by ignoring it and thinking that I had this all under control.

But this disease is hard, it’s real, it sucks, and honestly I feel like I’m just winging it.

I needed you in my corner, cheering me on.

But you were nowhere to be found.

I felt like damaged goods; I wasn’t “perfect” in your eyes anymore.

Diabetes was too much for you to handle.

I get it, I do.

Sometimes this burden feels like it’s too much for me.

But I can’t quit.

Now that I’m doing good, it may seem like I’m winning.

But I haven’t won yet.

It’s not fair to get to see me at my best, but not at my worst.

This is not how it works!

When I put my boxing gloves on, you should have put a pair on too and fought right alongside of me.

But you didn’t.

You chose to tap out.

This isn’t me being angry or resentful. This is just me confidently saying “I’m going to be okay”.

I forgive you.

I don’t need validation or approval.

I got this.

I found myself, and my voice.

I found a whole community that has my back.

I have a beautiful family that is there for me every step of the way.

With all my weaknesses, strengths, victories, and failures… I’ve made it thus far.

I’m proud of who I’ve become, and I’m never going to quit.

My Journey With Diabetes And The 5 Stages Of Grief

My Journey With Diabetes and The 5 Stages Of Grief

My Journey With Diabetes and The 5 Stages of Grief

Throughout my journey, I’ve experienced and endured the five stages of grief. The hardest part about this disease is the emotional aspect. If only I could have accepted the diagnosis from the get-go, adjusted to the life long changes, and lived happily ever after.

But unfortunately, that’s not how the journey unfolded.

Having to give myself insulin injections every day for the rest of my life seem painful, but that’s the least of my pain. Checking my blood sugar every day, all day, throughout the night, seems daunting, but that’s only the tip of the iceberg.

Denial

It’s almost been fourteen years since the day I was diagnosed. I was 12 years old at the time. Granted, I was old enough to grasp the idea that things were now different but I couldn’t process it to the full extent. I thought I would get home from the hospital and things would go back to normal. Or I could try to ignore it and it wouldn’t affect me.

I was in “denial”. Denial that I was different than my family and friends. Denial that I now had to use syringes to inject myself with insulin to or I would die. Denial that I wasn’t okay. Denial that anything bad could ever happen to me.

I felt invincible, and I could just skim through life untouched. I was only a child. I didn’t want this and I couldn’t accept something I didn’t understand.

Anger

My denial towards diabetes went on for a few years until I had severe life threatening run-ins with diabetes and I soon realized I couldn’t avoid it anymore. My emotions started pouring out. I felt sad, desperate, and angry.

I was angry with my family mostly. I inadvertently took in out on them in desperation for help. I was angry for not feeling understood. I was angry for feeling helpless. I was angry that I couldn’t change this. I was angry in the fact that I didn’t want to be angry at all.

I didn’t want to be bothered. I didn’t want to be asked about what my blood sugar was or what I was eating to fix it. Or if I took my insulin. I didn’t want diabetes.

Bargaining

I finally reached a point where I was desperate for answers. I was experiencing grief over the life that I envisioned I would have without diabetes. I see all my peers going to class, dances, and after school events without the fears and thoughts that I constantly carried around.

I hid my diabetes from others. I would go to the bathroom to eat a snack or give myself insulin injections. Nobody knew that I had diabetes. But after awhile I started fearing for my future for how I was taking care of myself. I was constantly being reminded of the inevitable truth.

I know that I wanted a family one day, with my limbs, eyes, heart, kidneys, and myself intact. Whether I wanted to face it or not, this is what I have to deal with. I felt cheated, as to why I had to carry this burden. I just couldn’t figure out how to get where I needed to be.

I was fearful of the highs, more so than the lows. I was using a life-saving yet deadly drug known as insulin, to try to save the long term effects but not thinking of the short term amplifications. I was bargaining by trying to find peace within this, but essentially just gambling with my life.

Depression

As time went on I realized that this fight, this disease just isn’t fair. Often feeling defeated, wherein areas I feel I was trying to improve, I thereby have a lack in others. I stopped caring. I stopped seeking attention.

I kept to myself for awhile and struggled with an eating disorder called diabulimia for a short amount of time. I battled with my weight and how I felt about myself. The depression also led to drinking to cope and thereby also having a seizure.

The depression I felt was so subtle, so easily overlooked. But the depression was there and it was real. I felt alone and that was the worst part.

Acceptance

One of the happiest and most pivotal moments in my life was when I was able to find the courage to let go of what I can’t change. I was finally able to reach acceptance with my disease in the five stages of grief.

Becoming a mother was what helped me see my life in a different perspective. That there is a reason that I’m here. I’ve been able to come out from the other side and see the beauty and strength in all that I do.

I was able to take my life back and love the person I’ve become.

To find purpose in my struggles and use what I was given for the good. To help others, to educate, to inspire, to empower, and show compassion. I believe the gift of life is to make others brighter.

I’m now able to embrace my journey, my success, my struggles, my weaknesses, my doubts, my fears, my hurt, my love, my essence and live on

Feeling Judged With Diabetes

Feeling Judged With Diabetes

Feeling Judged With Diabetes

Dealing with diabetes is more than just a number. It’s more than an A1C result, a blood sugar reading, or the amount of carbs I’ve eaten throughout the day. It’s the endless minutes, hours, days, and years that I’ve been battling this disease.

If diabetes wasn’t hard enough—I often feel shame or guilt for how I manage my diabetes. I get the sense of anxiety and nervousness before going to an endocrinologist appointment. As if I have something to prove, and I’m needing acceptance.

It’s a look—or unspoken judgment that is presented. I feel uneasy and withdrawn—thinking to myself that maybe I’m not doing as great as I thought I was. Being told what I could be doing better, rather than all that I am doing right.

I think it’s a lack of communication and understanding. I feel misunderstood and judged with diabetes. I know that my health care team work towards helping me, but I sometimes feel like they don’t understand me. It’s one thing to be educated in something, but it’s another to be truly in depth with it.

Don’t get me wrong—I take a huge part in this as well. There are ways I could better communicate to my endocrinologist and health care providers. After all, there’s no one else who knows my diabetes better than myself. I know what works and what doesn’t. It’s been a lot of trial and error over the years. What’s great is when I can find a doctor who is on my team and we work great together. They understand where I’m coming from—while I can correspond with their recommendations.

By explaining that I’m trying my best but maybe could use help in certain areas.

Even when trying my hardest my efforts don’t always seem to show.

Why I don’t wish to try a certain medication and why I’m avid about it.

That having different views or ways of doing things doesn’t mean “noncompliant”.

How I’m feeling a certain way and that it’s okay to feel this way.

That sometimes just by having a solid conversation, helps ease my mind a bit. Hearing that I am doing a good job makes all the difference going forward.

Receiving some appraisal for being at this appointment, that I care, and to make me feel a little better leaving.

Feeling less judged with diabetes and being understood by my physician helps my diabetes management which ensures a better meWhile I do need their expertise and care, I also need myself in this more than anything. I know in the end it will be methat will get me to tomorrow, next week, 5 years, 10 years, 30 years down the line. I know what I’m capable of, and how far I’ve come. Nobody knows that but myself—that’s all that really matters. In this journey, I’m my own captain, leader, worst enemy, fan, advocate, everything.

Overcoming An Eating Disorder With Diabetes

Overcoming An Eating Disorder With Diabetes

Overcoming An Eating Disorder With Diabetes

With being diagnosed with type 1 diabetes since the age of 12, I never anticipated all the hurdles that I would have to overcome over the years including overcoming an eating disorder with diabetes. Nor did I ever anticipate having diabetes at all—but here I am.

Throughout my teen years, I battled with my weight. Whether it be due to hormones or my diabetes—it was painful for me to look in the mirror. A lot of my anger and denial towards this disease was because I didn’t know how to accept it. Many of my peers didn’t have to face this reality—so why did I have to?

Many of negative feelings towards this disease led into depression, poor eating habits and lack of exercise. I was often picked on in school for my weight. I separated myself from people to avoid being judged or misunderstood. It was hard growing up with a life threatening disease and coping with everything else going on in my life.

When I reached the age of 19, I suffered a short period of time with an eating disorder called diabulimia. This is where I restricted my amount of insulin in order to lose weight.  What I find so devastating about this disorder is that I was fully aware of the severity and consequences involved. Being that I require insulin to survive and for my body to flourish, I was essentially depriving my body of energy which could have led to death.

It wasn’t long before I broke the vicious cycle I was on. I couldn’t bare how I was feeling and what I was doing to my body. In my mind, I couldn’t justify the benefits over the risks anymore. A lot of what woke me up to the reality and what could happen to my body was a diabetic man named John (who I met). John was a 60-year-old man who suffered many complications after not taking care of himself over the years.

In the process of overcoming an eating disorder with diabetes , I started making major changes in my life. I started exercising exclusively. I also started watching what I eat. The more I started taking care of myself and my body on the outside, the better I felt on the inside. I still battle with my weight every day, but now that I’m on a good routine and regimen, it’s made my diabetes and other factors easier to cope with. A lot of what I’ve battled within this disease is mental, and that’s my biggest hurdle yet.

I’m wanting to bring attention to this important issue because it’s a problem I dealt with and needs more awareness. Type 1 Diabetics (woman and young females especially) are highly more susceptible to eating disorders—such as diabulimia. Having to constantly monitor blood sugar levels, diet, exercise, and manage weight can be detrimental on one’s self-esteem. The treatment and recovery can go far beyond just the diabetic themselves. It’s important to seek treatment and support from a physician and other reliable resources.


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diabetes burnout

Dealing With Diabetes Burnout: How It Is Different For Everyone

When hearing the phrase “Diabetes Burnout” the first thing that comes to mind is a form of severe distress. But when having type 1 diabetes for so many years, I know this isn’t always the case.

How can we directly define what dealing with Diabetes Burnout means for those that are diabetic? How come we pinpoint the exact symptoms or signs of having Diabetes Burnout?

We can’t. It’s not a one-size fits all scenario.

Just like how diabetes affects everyone differently, so does the effects of feeling burnt out by the disease. This disease is an everyday, lifelong battle. With no days off, no vacation – it’s a full-time job.

There’s been a time in my life where I would go days without checking my blood sugar – aimlessly taking insulin – and consciously avoiding my diabetes.

That is what I would consider some of the worst effects of being burnt out.

Now at the least, from time to time. I feel unmotivated and inconsistent with my diet.

All of which I would consider feeling “burnt out” by diabetes.

Does feeling burnout mean you’re a bad diabetic? Absolutely not. With anything in life, things can become too much to handle at times. But with diabetes, there’s no escaping it.

While battling ourselves, it’s also easy for others to judge. By making assumptions without knowing the actual demands and sacrifices that consist of having diabetes.

I’ll admit it’s hard to break free of feeling burnt out. I’ve battled with feeling helpless, depressed, and overwhelmed with caring for my diabetes.

diabetes burnout

But how can it be avoided? Dealing with Diabetes Burnout is not easy. Are there ways to help bounce back from it?

I went ahead and asked some diabetes groups of how to prevent or reduce the effects of feeling diabetes burnout. Here’s what others have suggested:

1. Taking vitamins.

By taking vitamins such as B-12 has helped others boost their spirits, energy, and helped them stay motivated. As well as Vitamin D, which helps boost your mood. Vitamins can help our bodies where we have a deficiency.

2. Exercising and staying active.

Exercising helps to lose weight and increases serotonin in the brain. Serotonin helps enhance mood, which helps to make you feel good.

3. Getting involved.

Participating in support groups, volunteer events, fundraisers, charities, and diabetes advocacy are all great ways to support the cause. By being involved helps you stay focused and determined to make a difference. Not only are you making a difference in your life, but others as well.

4. Setting a goal.

When setting goals, it’s important to be realistic. Making small changes can help achieve those goals, rather than setting expectations too high in a short amount of time. Whether it be lowering your A1C, losing weight, or making certain lifestyle changes.

5. Starting from square one.

Sometimes the best thing to do is start from where you began. It’s a task to break bad habits and develop new ones. But it can be revitalizing to start fresh. By re-evaluating how to manage diabetes, re-educating yourself, and essentially gaining a new perspective.

diabetes burnout

This journey we’re on is a crazy ride. What I’ve learned from having diabetes, is it’s a lot of trial and error. Seeing what works and what doesn’t. Our bodies, minds, and our diabetes are each our own . By identifying and accepting our flaws, we can make improvements for the better.  I’ve taken the unnecessary pressure off by knowing there is no such thing as perfection with diabetes. “I am human after all“. All I can do is strive to be better. Strive for improvements in my life. That’s my success story.

“Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove we showed up for it.”