#Dblogweek 3 – What Brings Me Down

dblogweek

 

Click for the What Brings Me Down – Wednesday 5/14 Link List.
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

from bittersweet diabetes

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Well, I just have to say that May being mental health month was something I was aware of long before diabetes entered our lives.  I try to stay away from talking about my bipolar on this blog, because, well, this blog is supposed to be about diabetes. And plus, I have a whole other blog dedicated to my journey with bipolar (Which has been sadly neglected the last year or so).

But, I feel like today would be an okay day to blog about my bipolar and our family’s overall mental status in regards to T1D.  It’s been over a year now since Angelina’s diagnosis and I feel like we are in a good place.  I’ve made being a diabetes expert my life’s goal (joking, sort of.) and even being relatively newly diagnosed, I am quickly reaching expert status.  Angelina’s endo actually called me an expert at her check up two weeks ago, that was weird, but made me feel all warm and fuzzy inside.  Part of my mental issues are that my version of reality is something grossly WRONG compared to other people’s.  I tend to question and second guess myself often because of this and then swing wildly the other way and believe that I know better than almost anyone else.  It just reminds me of the totally cheesy 90’s commercial for Sure Deodorant.  Anyone remember those?  That is me on a daily basis, except I’m not worried about damp armpits.

 

So, I come off being either totally arrogant, or neurotic and wishy-washy.

On another note, bipolar and diabetes have a lot in common.  When you’re out of your “normal range” you may act oddly and have little control over it, you may be cranky and irritable, you may want to just lie down and sleep all day, you may want to eat everything in sight, or maybe not ever eat anything ever again.  You may realize that you are high or low and try to do something about it, only to find yourself plummeting dangerously in the opposite direction, seemingly spinning out of control.  Or, you may not recognize when you are high or low until someone else points out that you are acting strangely.  Sometimes highs or lows (blood sugar or moods) happen for no apparent reason and may stick around stubbornly despite your best efforts to try to control them.  Sometimes you get stuck in a rut and just give up on trying to control it, despite the consequences.  Sometimes you put in no extra effort and things are wonderful.

Moods and blood sugars can both be affected by: food, hormones, stress, exercise/activity, weather, medications, illness, other medical conditions, changes in routine or sleep, your support system (or lack of), proper professional support (dr, therapist, etc) and education.

Both conditions are subject to being misunderstood and stigmatized by the general population.  Both conditions are often the brunt of jokes or flippant statements that are only loosely based in fact, if at all.  Neither condition has a cure.  Both conditions are very serious and require intensive management and treatment to avoid immediate and future complications.  Both conditions are prone to not be taken seriously unless you have them or are very close to or a caregiver for someone who has either of them.

On the other side of that coin, they are different.  T1 has a very medically measurable physical cause, bipolar doesn’t usually.  T1 is more physically painful with all the pricks and pokes and is often more publicly visible.  Bipolar is more mentally and emotionally painful and often is “invisible”.  While T1 is a physical disorder and bipolar a mental disorder, they both effect the mental and physical side of a person.  Neither are easy.

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#DBW 1 – Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)    From: http://www.bittersweetdiabetes.com/p/2014-diabetes-blog-week-topics-posts.html

 

While I’m not out to change the entire world, I do try to change at least our small part of it.  So, what am I passionate about when it comes to diabetes?  Can you guess?  I can’t pick just one topic.  Support.  Education. School issues.  Those are probably the ones that I participate or talk about the most.  The ones I am most passionate about.

I don’t see “support” and automatically think about it being advocacy though.  I think of it as a lifeline for anyone who is dealing with diabetes in any way – whether it is a person with diabetes, parent of someone with diabetes, friends, family, co-workers.  There is no limit to who can benefit from support when it comes to having diabetes touch your life.  I honestly wouldn’t be where I am right now in Angelina’s journey if it weren’t for the DOC and the 24/7 support and connection with so many other people who are walking a parallel road.  Which brings me to the next cause:

EDUCATION.  Diabetes education is probably the thing I am most vocal about, simply because I feel like there’s not enough awareness out there about Type 1.  And it seems that even the people who try to raise awareness for Type 1 do it at the expense of Type 2.  By saying “well, that statement that you made about food doesn’t apply to T1.  My T1 child didn’t do this to themselves.”  While the statement is true, it implies that people with T2 “did it to themselves”, which is not always the case.  I don’t agree with raising awareness and education for one condition while making ignorant statements or putting down people with another, similar condition.  Yes, Type 1 and Type 2 are different.  Yes, Type 2 does have risk factors that include lifestyle choices… but, it also has a strongly genetic component.  And regardless of any of that, diabetes, in any form, SUCKS!  No one asks to have diabetes.  So placing blame doesn’t benefit either cause. If I am going to teach someone about something and part of that education is differentiation from a misconception they have based on something else then I am also going to educate myself on the other topic (in this case, Type 2) so that I don’t come up looking like the ignorant and mistaken one.

Lastly, school issues.  This is a tough one for me.  I have a loud mouth, and a blog that I can share a lot of information on.  Feelings, frustrations, triumphs, thoughts, information…  But when it comes down to it, advocating for your child at their school is HARD.  Because it’s not about just shooting your mouth off.  If you want things done your way at your child’s school then you have to find a balance between being pushy, and being a push-over.  If you go in guns blazing, chances are the school personnel are going to push back against everything you demand.  But sometimes, if you go in nice and easy they just steam roll right over you and you leave feeling like you weren’t heard and didn’t get the things that you want and need for your child’s safety and well-being at school.  Finding the balance is difficult.  Forget difficult, it’s damn near impossible.  Sometimes you can’t do it on your own.  Both the American Diabetes Association and JDRF will provide information for working with the school on your own to come to an agreement about how your child’s diabetes will be managed at school.  Sometimes, doing it alone isn’t enough.  Both the ADA and JDRF have legal advocates that can help guide you and will also attend meetings with you to make sure that the laws and regulations regarding students with diabetes are being followed.  And sometimes, the school seems to go along with all your requests during 504 meetings and then doesn’t follow the accommodations that were agreed to.  Taking the steps to make sure that not only are the accommodations being agreed to, but also followed, can be a tenuous process.  But, in the end, our children are the priority and as a parent we must do whatever it takes to ensure that they are having their needs met.

Insulin isn’t a cure… it’s also not a cause.

This was shared in Type 1 Group that I participate in. This plaque/exhibit is located at the National Museum of American History, which is part of the Smithsonian Institute in Washington, D.C. It just goes to show that even in the scholarly community there is a lot of ignorance and misinformation about type 1 diabetes. For those of you reading this who have T1 or are raising/have raised a child with T1 you can understand why this is upsetting.
1962719_10152769915681777_186074962_nThe plaque reads:

GROWING DEMAND…

Before the discovery of insulin in the early 1920’s, people who developed diabetes usually died within a few years. Although insulin therapy was not a cure, its use, along with dietary control and constant monitoring, enabled diabetics to live long and active lives.

The success of insulin therapy created a growing population dependent on the drug. Over the past 20 years, unhealthy changes in lifestyle and eating habits have contributed to a dramatic increase in the number of Americans with diabetes. Together, these factors have generated an ever-expanding demand for insulin.

For those of you who don’t see a problem with what is written: That is the problem.  There are many awareness campaigns out there about Type 2 diabetes and how getting active and eating a healthy diet can help prevent developing type 2, but there is little differentiation, even in the medical community about the Type 1 and how it differs from Type 2.  Those who are uneducated on the subject (and even some of those who should be educated, but aren’t) seem to lump the two together not realizing that they are in effect blaming children (or parents) for their child getting Type 1, when in fact there are no prescribed risk factors, no prevention techniques, and often no real indication of there even being a risk.  Only about 10% of people who are diagnosed with Type 1 have any family history, which means that for 90% of those diagnosed, they often have no idea they were even at risk until they were diagnosed.

Type 1 and Type 2 are vastly different conditions, caused by different things, and the treatment is also managed very differently. The similarity is that without treatment they both cause high blood sugar, which causes excessive thirst and frequent urination, among other symptoms. The name diabetes mellitus comes from Greek and Latin origins with the “Diabetes” meaning “pass through” or “siphon” while “Mellitus” means “honey” or “sugar” and refers to the urine passing through and being sweet. In ancient cultures “sweet urine” was first discovered by the fact that people with this condition had urine that attracted ants and had sweet odor and taste.
Anyway, Type 1 diabetes, which is an autoimmune condition, is when the insulin producing cells in the pancreas are attacked and killed by the immune system causing the person to no longer produce insulin, requiring the use of insulin from an external source, today that is primarily synthetic human insulin. The exact cause of the autoimmune reaction that triggers the cells in the pancreas is still a bit of a mystery in the medical community. But, the fact of the matter is that without supplemental insulin people with type 1 diabetes will die. No amount of exercise and healthy eating will cure them, or even treat them, without also having injected insulin. There currently is no prevention or cure for type 1 diabetes and the most effective treatment is injection insulin.

Type 2 diabetes, on the other hand, is when insulin is still produced by the pancreas but the body does not use it efficiently because their cells are insulin resistant. A low carb diet and exercise both help to increase insulin sensitivity, as well as certain oral medications. Diet and exercise can be used to maintain relatively “normal” blood sugar levels in someone with type 2. In some cases, people with type 2 may progress to a point that their pancreas is working extra hard to provide enough insulin to meet their increased needs due to insulin resistance and some of their insulin producing cells may be overworked and stop producing, requiring the person to also use supplemental insulin, but again this is in conjunction with lifestyle changes and oral medications to increase their response to the insulin they make as well as insulin they may receive from an outside source. The cause of Type 2 diabetes often has to do with a genetic pre-disposition and can also be further contributed to by poor nutritional choices and little exercise. In a lot of cases type 2 can be prevented, or managed with a proper diet and moderate exercise and insulin is rarely, if ever, a first line treatment for Type 2 diabetes.