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How My Other Illnesses Helped Me Accept My Type 1

How My Other Illnesses Helped Me Accept My Type 1

Blog: Love, Light, and Insulin


It took me 10 years to truly accept that I have Type 1 Diabetes. I know, that sounds impossible, but it really did. My mom was diagnosed with Type 1 Diabetes at the age of 8. So I grew up in a Type 1 household. Our family didn’t need to be taught fresh. We already lived surrounded by needles, meters, and glucose tabs.

I was 12 when I was diagnosed. Just entering high school.

I have no dramatic diagnosis story because with my mom’s knowledge we actually caught it early. It was a full year until my pancreas completely stopped making insulin.

12 is a strange age. I was just entering high school. I was an awkward tween with braces. I just wanted people to like me, but I didn’t even know who I was yet. So I kind of just pushed my Diabetes to the side. It’s not that I completely ignored it, but I just dealt with it without having any sort of grieving process. I followed along with what my mom did and continued with life, hiding in the bathroom at school to give my insulin, and pretended it wasn’t a big deal.

Then at 20 I was hit with a mystery illness.

I was in school for professional photography and I just felt awful every day. My legs started to feel like lead when I walked. The trek from my suburb to school downtown began to feel nearly impossible. I developed a wide gait and walking, something that used to be so natural, became difficult. That was the last time I was in school. At this point I had been to my doctor and she had asked me if I was depressed… if my Diabetes was under control… if I was exercising, because all my tests were coming back normal.

Next came scarier and stranger issues. I had stroke-like episodes. I started going into urinary retention. My gastrointestinal problems that I’d always had became more severe. I was lightheaded and nauseous standing up. It just felt like my body was falling apart.

And it was a uphill battle to get doctors to believe me and take me seriously. In the meantime, I was not well at all, and the realization hit me that having Type 1 wasn’t no big deal. It hit me that this disease was just as important, and just as scary and serious as all these other issues I was dealing with. It was a big deal and a complete full time job. One that I couldn’t forget to do when I wasn’t feeling well. One that I had to keep in good control to prove to my doctors that I was a compliant patient. One that was even harder to care for than some of my other issues.

So while I didn’t know what was wrong with me in every other way… I knew I had Type 1 Diabetes.

This is when I started venturing into the Diabetes Online Community. Talking to all these people who got it was such a miracle for me. From there, I found the whole chronic illness community, and both of them together helped to get me through all the years of the unknown. I found others who had both Type 1 and other unrelated illnesses. I wasn’t alone and I wasn’t the only one going through all this.

And then some tests started to come back positive. Through urodynamics I was diagnosed with Bladder Sphincter Dyssynergia, a form of Neurogenic Bladder. Through a Sitz Marker study I was diagnosed with slow intestinal motility. Through a tilt table test I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS for short.

But my walking and balance problems were still a mystery. I had about 4 neurologists tell me I had conversion disorder but kept fighting, because I knew that wasn’t right. There so many tears shed after appointments, so many let downs. So many medical professionals who just didn’t take me seriously. Until this year.

My neurologist (one who had previously thought I had conversion disorder), called and asked me to come in and discuss some results. She told me that she thinks I have Stiff Person Syndrome, a literal one in a million disease, and started me on treatment. Stiff Person Syndrome is a rare neurological autoimmune disease that you can probably guess from the name, causes progressive stiffness and muscle spasms. So I don’t know what my future holds. I don’t know how much worse things could get or how quickly.

So right now I’m trying to live out my life the best I can with a disability.

I’m trying to go out of my comfort zone and go on adventures. And now, I can take a step back from this 5 year search for answers and breathe the biggest sigh of relief. Because although having a debilitating, progressive illness is no fun, I would rather know than not know.

Fun fact: Though Stiff Person Syndrome is thought to occur in fewer than one million people, 60% of people who do have Stiff Person Syndrome have Type 1 Diabetes.

And if I had any advice, it would be that you know your body best. Be your own advocate. Let your voice be heard and let it be strong. Don’t let the sounds from others get in the way. You are always stronger than you think you are.


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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.

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.