Health Care & Politics

This is what a pre-existing condition looks like.

It's no secret that the ACA (Affordable Care Act) is under extreme pressure right now. It is on the verge of being completely dismantled by our government. Replacement is still hazy, with no real plan being announced for something to take the place of ACA at this time.

I'm doing my best to keep up with what's happening on this front, but things are happening so quickly right now that it is difficult at best. I'm aware that ACA is not a perfect system. There are issues that need to be addressed, including rising health care premiums and deductibles that are breaking the pocketbooks of many Americans.

That being said, I'd like to point out a few things that ACA (Affordable Care Act) has done that are positive. So no matter what side of the ACA fight you're on, I think we can all agree on the fact that we want the best coverage we can get, and it needs to be financially affordable for all Americans. If the ACA is overturned, let's hold our lawmakers accountable to make sure that certain protections are kept in place. If the ACA is kept, and "fixed," let's hold our lawmakers accountable to make sure that everyone can afford good health care coverage.
Some things that the ACA has done:

1.) Children are allowed to stay on their parents' insurance until they are 26 years old, giving them time to complete a decent education and establish themselves before taking over this costs themselves.
2.) No insurance company can deny health insurance to a person based on a pre-existing condition (I have 3 of those!).
3.) A person's health insurance premium is not based on their gender (it used to be) or their health conditions (same thing). Pre-ACA a woman was charged more than a man for health insurance. And if you were lucky enough to get health insurance with a pre-existing condition, you could be charged way more for your premium.
4.) There are no longer annual and lifetime caps on what an insurance company will pay out for a patient. Pre-ACA, an insurance policy could limit the dollar amount they would pay out in a year, or even in a lifetime. Someone with a chronic illness or traumatic event could max these out and be stuck paying the difference.
5.) Preventive care is now free. This means your yearly check up with your doctor is free to you. This just makes sense. Regular health checkups mean less illness. Less illness means less cost to the insurer and to the patient.
6.) Birth control is free to women. Let's think this out: Pregnancy is expensive for patients and insurers. If you offer free birth control, there are less unplanned pregnancies, meaning less cost to insurers and patients. Less unplanned pregnancies also mean less abortions, and I think everyone can agree that is a good thing.

These are all positive, GOOD things that came along with the Affordable Care Act. We need to keep these things (among others) if we are to have a strong, healthy society. So no matter how we get there, by fixing the ACA, or repealing and replacing it with something better, we need to be sure that we keep these things in whatever legislation is used.

So, don't hesitate to contact your lawmakers. There are websites that even make it easy, like DPAC (Diabetes Patient Advocacy Coalition). Or you can visit usa.gov to find out who your elected officials are and contact them yourself, by phone, email, fax, or set up an appointment to meet with them in person.

This shouldn't be about Democrats or Republicans. This shouldn't be about taking a side, or who you voted for. This is about making sure that everyone has access to affordable healthcare. That isn't partisan. That's just kindness. Diabetes and Celiac don't discriminate. Many other pre-existing conditions don't discriminate. They can affect anyone at anytime. So that means this issue affects us all.

No More Shame

Miss Manners,

There's too much shame and stigma involved with diabetes. Some of it is external. Some of it is internal. But it is all very real to a person living with diabetes. People place blame on those living with diabetes. It must be your fault that you have diabetes. It must be your fault that your blood sugar is too low. Or too high. It must be because YOU did something wrong.

Being a vital organ is hard work. I wasn't cut out to be a pancreas. But I am. Every single day. But because I'm human, and because there are about ten THOUSAND external and internal things that I have no control over, diabetes can't always be perfect. I can't always have perfect blood sugar levels and sometimes I have to do things like test my blood sugar. In public.

GASP!

Heaven help the people around me that might see me test my blood sugar or give myself a bolus with my insulin pump (or an injection, if my pump happens to fail). I do my best to be discrete when I'm in public, but I don't hide what I'm doing.
I am a person with diabetes. I can test my blood sugar from six to twelve times a day. I can't always get up and escape to a bathroom. Even if I could, public bathrooms are disgusting and gross. In fact, I rarely use public bathrooms, unless I don't have an option. So why on EARTH would I test my blood sugar in one?

I am pretty open about my diabetes. I wouldn't have this blog, and be a member of the Diabetes Online Community (which I'm sure you didn't even know about until your recent response to a reader with diabetes) if I wanted to hide my diabetes. But I still have some shame.

Sometimes I feel like people think that I chose to have diabetes. Trust me, I didn't. Sometimes I see people stare at my insulin pump infusion site when I wear it on my arm. I want them to ask what it is, and not just stare at me like I'm a freak. Sometimes I wonder if they see the small lump under my dress that is my insulin pump or the small bump on my leg through my pants where I wear my constant glucose monitor. I wonder if they think I'm a spy or a secret agent wearing electronic equipment...or if they just think I have strange tumor like things growing on my body.

Diabetes is hard. Not only on your physical body, but on your mental state as well. After 28 years of living with Type 1 diabetes, I should know. I should also be over my self-consciousness and shame. But it still creeps in from time to time. That's why I do my best every single day to take care of myself. To not have shame for something I had no control over. And to help bust the diabetes myths that are out there. I don't want those living with diabetes to feel like they should be ashamed of ANYTHING.

Miss Manners, when you tell a PWD (person with diabetes) that they should check their blood sugar in an airplane bathroom, you're telling them they have something to be ashamed of. And they DON'T. Discreet, yes. Hiding it completely, NO WAY.

I'm tired of people being ashamed of their diabetes. While it isn't something to be proud of (who wants to be proud of having a chronic illness??), it IS something to be proud of living with successfully. I'm a person with diabetes. I'm living successfully with diabetes. No more shame, Miss Manners. The problem isn't with your Gentle Reader. The problem is with you.

Take a little while. Read some blogs. Talk to someone living with diabetes about what it's LIKE to live with a disease that never goes away. Maybe you'll be able to give some better advice to your next Gentle Reader.

Sincerely,

Cara (T1 diabetic for 28 years)

Technology is Scary: A Skeptic Changes Her Mind

I was diagnosed with diabetes in 1986, a few months before my fifth birthday. I have very, very few memories of my life before diabetes. It’s just always BEEN. Diabetes has been a part of me so much, that I’m not entirely sure who’d I’d be without it. I’m throwing a wild guess out there that I’d have more money, less stress and get more sleep, among other things. But, it’s nothing that I can’t deal with.

When I was first diagnosed with diabetes, I was on ONE injection per day of the (now) antiquated NPH insulin. My doctors thought that a 12.3 a1c was “in control” enough to take my tonsils out 8 months after I was diagnosed. Life was different. Diabetes care was different.

Sometime after that (I’m not sure on how long, and my mother is a little foggy on the details) I went to two injections per day of NPH and Regular insulin. I stayed on that regimen, along with a strict eating schedule and fights with my mother when I was (as kids often are) NOT hungry and didn’t want to eat what was on my plate.

When I was in high school was the first time that I really heard of an insulin pump. They were just really starting to get “popular.” I didn’t know much about them. Other than that I did NOT want a needle in me all the time (I’m not sure if that was the case at the time, or if that’s just what I thought because I was uninformed) and I didn’t like the ideas of being attached to something all the time.

For years I resisted an insulin pump. During those years I also dealt with losing insurance, getting it back, losing it again, and getting it back again, so my diabetes care was spotty and I didn’t see and endocrinologist regularly. But I did meet a lady that I went to college with who also had diabetes. We had many classes together because we had the same major and ended up graduating within a semester of each other. She was a “non-traditional” student, meaning that she was older, married, had kids and did not live anywhere near campus.

But despite those differences we became friends. I got along with her better than I did many of my peers because I was also working my way through school (though it was only me I had to worry about) and had a semi more grown up view of life than many of the people my age. I say semi because I was still very much a college student. LOL.  

One thing that this lady had was an insulin pump. I’d never really seen one before. She told me how much she loved her insulin pump. She showed me how hers worked. She was the first person that I ever knew that made me think “I might actually like to have an insulin pump.” That was the first time I didn’t think an insulin pump was scary.

During this time, insurance coverage for me was sketchy, so it would be several more years before I decided to take the plunge and join the world of the insulin pumpers. But I did it, not because I heard about this cool new technology. I did it because I saw someone LIVING with this cool new technology.

Over the past year or so, people have been talking about the bionic pancreas thing. I say “thing” because I don’t totally understand how it works, but I get the basics. When I first heard about it, I thought “That’s a cool idea, but I don’t trust it. I don’t want a machine making all my decisions for me.” But being a part of the Diabetes Online Community has put me in the position to know and to “know” people who are at the front lines of this new technology. There are people who are part of clinical trials. And what I’m hearing back makes me think, “I might actually like this.”

Of course, there are a ton of things that have to happen to make this machine something that I can get. And afford. More testing, more trials, more trials, more testing. And then the FDA. And we all know how long it can be for the FDA to get anything done. By the time they do, there may be some other top notch technology waiting in the wings. I don’t know.

But after reading more and more about people that I “know” and that I know, who have been a part of these trials, I have to thank them. Thanks for being that person that opens my mind to new technology. New technology that I’ll hopefully be able to get at some point. Technology that might have as big of an impact on my life as switching from multiple daily injections to an insulin pump.

If I can’t have a cure, steps forward in technology are nice. Huge steps forward in technology are life changing. And thanks for those who are sharing your experience so people like me (the skepctics) can have a more positive outlook on what's coming (we hope). 

Opinions and Name Changes

Even though I’ve been slightly detached from the diabetes online community in the past several weeks, I’ve seen some talk about the petition going around that seeks support to have the names of T1 & T2 diabetes changed. This grabbed my attention almost immediately. I started searching around on the different posts that people were putting up, and even received an email from the women behind the movement and I read it as well.

I did some research, though for the most part I’ve been fairly quiet about it. Others in the D-OC have done a much better job writing about this and stating their opinions, but I wanted to state my own. It’s simple. And it’s nothing that hasn’t already been said. But I feel like I should say it from ME. I want my words on this.

First off, I was diagnosed with diabetes in 1986. I was just a few months shy of my fifth birthday. It was called “juvenile diabetes.” The pediatric endocrinologist that I saw told my parents that my pancreas probably hadn’t worked well from the time I was born, but I hadn’t been big enough for diabetes to show up yet. He also had me on one injection of NPH insulin per day. Barely 6 months later I had my tonsils taken out (due to chronic illness). My hospital records at the time show my a1c was 12.6 and in those records it stated “diabetes is finally stable enough to perform tonsillectomy.”   

Just in reading the above, if you know much about T1 diabetes, you will see about a million things wrong with that. I was sick a LOT as a child (a result of being a preemie). My guess is that one of my many bouts with strep throat triggered the deadly attack on my beat cells, resulting in my diabetes. We all know an a1c of 12.1 is far from stable and that, even in 1986, one injection of NPH per day wouldn’t cut it.

But it’s what we had. It’s what we understood. Eventually I went to two shots per day (of a mix of NPH and R). Still not great, but it was what we had. I rarely went to a pediatric endo. I ended up in a coma when I was 8 because no one ever taught my mother that just because I was sick with a stomach flu didn’t mean that I didn’t need insulin (in her mind I wasn’t eating… I didn’t need insulin).

Life was different. I lived for a few years before I remember being called “insulin dependent” and many, many more years before I was dubbed “Type 1.” But it’s was what we knew. It was what we had. Until I joined the D-OC, I’d never heard of an adult being diagnosed with T1 diabetes. I’d never heard of a child being diagnosed with T2.

Knowledge was different. Education was different. And even now, I feel like my own education about diabetes is constantly evolving. It was only a few years ago, I am ashamed to say, that I even mentioned about a name change. The conversation started somewhere online and I said, “Heck, yeah!” But I was wrong. I’ll admit when I am.

I am not skinny. If I told a random person I had diabetes, it would be very easy for them to look at me and say, “If you’d lose weight, you’d be cured!” In fact, I even had a “health coach” tell me I could come off insulin if I lost weight….and she had my paperwork in front of her with my T1 diagnosis on it.

I have friends who are T2 who are not overweight. I have friends who are overweight that are not T2. I have friends who had diabetes when they were pregnant. I have friends who once took insulin for T2 and now take nothing…not even a pill. But the fact is that we ALL have diabetes. We ALL put up with media, medical, and public misinformation. We have ALL lost friends to this disease (or know someone who has). We ALL need to take a stand. For each other.

Of late, I have been very much on my soap box about the way that T2 patients are treated. By medical professionals, the media….and even some of us in the D-OC. I would love to have an off line advocacy in my area that dealt with informing T2s and informing medical professionals about T2.

The truth is…I feel like this name change petition is an attack against T2 patients. And I don’t like it. People with diabetes live with a HUGE amount of guilt, no matter what type of diabetes they have or when they were diagnosed. I think T2 patients often get even more of this guilt piled on them by the media and even their medical team.

Would I love to have the media, the general public, etc know that I have diabetes caused by an auto-immune attack on my beta cells when I was a kid? Sure. But making them understand that isn’t about changing the name of the disease. It’s about educating people about diabetes and the different types there are. It’s about educating people that just because someone is overweight, doesn’t mean they could “eat less/diet/exercise” and make said diabetes “go away.” It’s about educating them that just because someone is thin or athletic doesn’t mean that they have “the bad type” of diabetes.

Diabetes is an extremely complex disease with extremely complex treatments and extremely complex emotional issues that come along with living with a chronic illness “every day, every hour, every minute.” We do NOT need to place something else that will ultimately cause more division, more confusion, and more discord. We should be pulling together as a community and advocating for more research, better technology, better treatment, and more education for the general public.

I know I’ve only said what others have said. But that’s just my opinion and I really felt the need to write about it….and that’s what a blog is for, right? 

Also, on a completely separate note: This is my 500th post. Wow.