#DBlogWeek Day 4: What brings me down

May is Mental Health Awareness Month and today I will discuss the emotional side of diabetes.

It's not pretty. 

It's heart wrenching. 

As a caregiver I can't tell you how many lost hours of sleep I have had.

• It may have been from being up all night keeping my daughters alive as their blood sugar is dropping lower or rising higher.
• It may be from an illness where vomiting, changing sheets, pushing insulin, hydrating, ketone chasing and wondering when the right time is to call the endocrinologist.
• It may be from the nights of what I like to call suicide watch. When your T1D loved one is so overcome with life that you worry that they will overdose on insulin. 
• It may be from the worry that fills me when overnights at friends happen and I don't know if her CGM alarm will wake her when she is low. 
• It may be the anger that fills me when my daughters have had to grow up years faster than what they should have and worry about what age they will die.
• Maybe it's a combination of all these things.

I'm sure to some on the outside this sounds dramatic. 

Maybe it is. 

But maybe it is spot on. 

Instead of losing my mind...although some might argue that point...I choose to find things that lift me up. Things that help me work through the stress of having kids with chronic illness. That is why I write. That is why I volunteer. That is why I run. That is why I advocate. 

Diabetes is draining. To me...and I'm just the caregiver. 

I've seen how it affects my girls. 

I would gladly take it away from them so they could be carefree if I could. 

No one signs up to be a pseudo-pancreas. It's thrown at us. We have no choice. It's do or die. I have no medical degree. But I have a Momma Bear heart with a passion and fierceness that will kick ass for my kids and my family.  

To those on the outside reading this...you have no idea the burden we carry. That smile that we have painted on our faces helps us get through the day. Give us a hug. Give us an ear. Give us compassion. 

For those deep within the community...you AREN'T alone. It may feel like it but you aren't. Surround yourself with people or things that soothe and calm you. 

You got this. 

#DBlogWeek Day 3: the Blame Game

The Blame Game...part of my job at the American Diabetes Association, when I am not actively serving as Camp Director is Community Health Strategist. This involves going to health fairs put on by companies, schools, and hospitals in the community. A few months ago I attended a health fair at a big Cincinnati company. I set up my table with Type 2 Risk tests, Pre Diabetes fliers, diabetes statistics, recipe cards, healthy food options and what a healthy plate looks like.

The employees filed in and each of them were given a card that the vendor checks off and in turn they return to the company for a prize. I am stationed between Girls on the Run and Green Bean Delivery. I brought ADA sunglasses so at least I had something fun to give away because who really wants to stop by the ADA booth? What fun is it to talk about diabetes?

A few things I observed.

• The employees who were Type 1 came by and we talked about their insulin regime, camp, initial diagnosis, how long they've had diabetes and I always let them know about my girls. We talked about upcoming Tour deCure and Stop Diabetes Walk opportunities and thanked them for stopping by. Overall tone of "diabetes sucks but nice to meet you and have a great day!"
• The employees who were Type 2 spoke in hushed tones. They told me of their struggles and/or successes. They talked about their care from their primary care physician, asked medical questions. Overall tone of "diabetes sucks and I am ashamed that I have it". 
• The employees who had a loved one with Type 2 and felt the need to take the materials I had brought so they could strategically place them around the house. Overall tone of "I mean well...but I know what's best and leaving these fliers around the house will make my love one instantly take better care of themselves". Ugh...if only they knew it doesn't work that way! 
• The employees who would skit by laughing and say "I'm not there yet!" What?! Who wants to be "there"? Overall tone: Diabetes was inevitable...so sad. 

I tried to encourage that afternoon. I listened and shook my head when necessary but at the end of the day I felt sad. Sad that there is so much stigma attached with Type 2. So much blame from well meaning people but they just don't get "it". 

We need to stop the blame game. Blaming others isn't going to help anything. It won't stop diabetes. It won't cure diabetes. It just alienates the person with diabetes and makes them feel shameful. We need to lift each other up. We need to encourage and understand that diabetes isn't easy. We need to offer to listen to our friends and family when they vent about how hard it is to take care of diabetes. We need to walk alongside them in their journey with diabetes; not be a know-it-all; holier than thou; judgmental "friend". Diabetes is HARD!! Let's stop the blaming and start the liberating! Let's work together!

#DBlogWeek Day 2

The Cost of Diabetes...this is a HOT topic! The state in which I live has a state administered program run through the Department of Health called Children with Medical Handicap which covers any appointment as it relates to diabetes; or other chronic illness. The first year of diagnosis everyone qualifies no matter how much income you bring in. After that, it is income eligible. This health care program will also work as a secondary insurance in the event you already have primary insurance. This has been a saving grace for our family. Imagine the cost of diabetes supplies times two and throw in a son with a bleeding disorder whose medicine costs roughly $1/unit and he is prescribed medicine based on height and weight...right now he takes over 2000 units twice a week; more if needed! Our family would be bankrupt if it weren't for our primary insurance and our state program. 

Unfortunately, our eldest daughter aged out of the program when she turned 21. Now that she is on her own she is learning about the cost of diabetes. She is still on our family primary insurance but at the beginning of each year; when we haven't met the deductible yet and we order insulin, test strips and pump supplies it is outrageous. She has been known to come over and borrow supplies from her sister to help get her through to her next Rx refill. I guess this would be the upside of having two T1D kids...we seem to have supplies. 

But it is a real stress for my daughter. She worries about the cost of insulin and test strips. She wants to take care of herself. (Author note: we would gladly step in and help her pay for her Rx should we need to). But for the moment...take our offer away and it's up to my newly graduated daughter, with student loans to figure out how to buy her life saving insulin and test strips. That is a lot to ask a 22 year old to juggle. It is absolutely ridiculous, in this day and age, that people are having to choose paying for their groceries or their insulin. And don't get me started on the increasing price of insulin! Dr. Banting would die a million times over if he knew how greedy our pharmaceutical companies are now. 

Diabetes is stressful enough in the day to day management...why should insurance add extra stress to our families and loved ones? 

Diabetes and the Unexpected #DBlogWeek Day 1

Diabetes and the unexpected...always! When our now 16 year old daughter was diagnosed in June of 2005 at the age of 4; that was unexpected. When our now 22 year old daughter was diagnosed in June of 2012 just before her 18th birthday; that was unexpected. (Even though we knew a diagnosis was eminent from our TrialNet screening. You can read about that here.) The truth is...who ever expects a diagnosis? Let alone a life changing one for you or your loved ones?

Our family has rallied through each diagnosis! It has brought us closer and given us many wonderful opportunities that we would not have had if diabetes wasn't in our lives. Would I trade those opportunities to not know diabetes...IN A HEART BEAT! However, we've been able to advocate for diabetes awareness; not just locally but nationally. My girls have been able to find their voices to advocate for themselves both at school, at work and to CEO's of pharmaceutical and medical industries. We've been able to mentor many families and let them know they are not alone in their diagnosis. That yes, it sucks, it's life changing but life goes on... and so will they as they learn to navigate the world of diabetes. We have made some spectacular friends in the D community that we would never know if it weren't for our unexpected diagnosis.

No one wakes up expecting a diagnosis of anything...it's what you choose to do with that news that makes a difference. You can choose self pity and negativity or you can choose to make the most of your diagnosis. We have chosen to thrive! We choose to empower and encourage; each other, newly diagnosed, those who have been diagnosed for years and strangers. Diabetes isn't always rainbows and unicorns but it's how we choose to react that can take the unexpected and make it exceptional.