When a Bleed isn't a Bleed

Wow! So much has happened since I last blogged but I want to get this story out to you.

Last month we celebrated our daughter turning 17! She rarely asks for anything but this year she asked to go to SkyZone (an indoor trampoline park) with some of her friends; so we said SURE! We also told our other kids they could invite a friend and we could make it a family affair. 

For those of you who follow me you already know I have a three daughters (yes...we added another...more on that later) with Type 1 diabetes and our son has hemophilia, a bleeding disorder. So the fact that we were going to a trampoline park hosts a whole set of different issues with both chronic conditions. For the Type 1 diabetics we have to worry about low blood sugars from increased activity. For our hemophiliac we have to worry about possible injury and bleeds. But...chronic illnesses be damned...we had a birthday to celebrate and we can't live in a bubble! 

We buy tickets for all the kids to jump for an hour and my hubby and I decided why not?! And we jumped for 30 minutes; we had a blast and also realized that we are old and can get hurt too but see my bubble comment above! 

How Jackson passes the time waiting for to be called back to his room at the HTC

The kids were in the last few minutes of their hour of jumping when our son came out and let us know he had a back bleed (he is lucky he is able to tell when he has a bleed before any sign appears). Darn it! We headed out; since we were done anyway and went home to infuse his blood clotting factor medicine. We iced him up and let him sleep in the King's Throne aka the recliner for the evening. The next morning he said it still hurt so we infused again; as it was his regular infusion day. Monday we called our local Hematology Treatment Center (HTC) and let them know that he was still in pain which was weird as he usually bounces back quite quickly upon administering his infusions. They decided he needed to be seen by the hematologist.

We head into the HTC and he is given an exam and gave us an adjusted infusion schedule. They decided he needed daily infusions and they would re-evaluate on Wednesday if he wasn't feeling any better. Wednesday comes and he isn't feeling any better. We head in and he is given another exam and a MRI. The Doctors are concerned he has a bleed along his spinal cord. This was his first MRI and he did a great job! He was able to watch a movie while the scan was being done so it wasn't too bad. 

The results were interesting. There was NO bleed. The diagnosis?

A herniated L4 disc...which is extremely rare in children. Not only that but the way in which it was herniated didn't allow for surgery or physical therapy; just rest. The best guess from the Doctors was the injury occurred when our son went for a trampoline slam dunk and twisted his back in conjunction with the bounce of the trampoline and how his body elongated and then compressed. He was told to not even think about the trampoline park for at least a month! 

We are now about a month out from the herniated disc and he is fully recovered! He has rested as best as a 9 year old can. Would we change anything? No. This didn't happen because of hemophilia...it was a fluke thing...it could've happened to any of our kids...chronic illness or not. We choose to live our lives and have fun. We can deal with high and low blood sugars, bleeds and now herniated discs. 

#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.

The Living with Diabetes Assignment

One of my jobs is Camp Director for our local American Diabetes Association. It is a fun and sometimes stressful job but so rewarding! I have the opportunity to meet some amazing, dedicated and passionate people from the camper family side to the volunteer medical side. Last year we were approached by our local University College of Pharmacy to volunteer at camp and also bring some PharmD students that could receive class credit for their participation. It worked brilliantly! The Professors who organized it where fantastic...especially given that they had no idea what to expect. The PharmD students loved helping as well and gained valuable insight about type 1 diabetes and how it affects kids differently. 

This year the Professors offered an advanced diabetes course elective and invited our camp nurses, psychologists and myself to talk about our experiences at camp and in some cases living or caring for people with diabetes. In preparation for the class the students had a Living with Diabetes assignment they had to complete. This entailed living with Type 1 for two days and then Type 2 for two days. The students were required to purchase a glucometer, testing supplies, alcohol swabs and sharps container. They were provided with metformin (in this case candy) and and insulin (in this case saline), syringes and log books. 

For their submersion days they acted as either type live. Counting carbohydrates, testing and logging blood sugars, administering insulin, taking Metformin, they even had to insert and maintain an insulin infusion site and constantly think about diabetes 24/7! 

I was invited  on the day they shared their experiences. All the students were shocked at the constant thought that went into being diabetic. The logging, the counting, the worrying. It opened their eyes to what it must be like. Many of these students already work in a pharmacy and shared they have dealt with diabetic patients and felt more empathy towards them now as they had walked a day in their shoes. They were happy for the understanding of what the burden of diabetes feels like for patients. They also understood the complexity of the disease and how it varies from person to person and why it's not always that easy to be compliant with their care. 

They listened as I shared my frustrations about going into the pharmacy and fighting with insurance and correct coding for billing and I did let with them know that we hate to hear, "do you know how much this insulin costs?!?" every January as we wait for our deductible to be met. It was cool to give them my perspective as a parent on caring for kids with Type 1 diabetes. We talked about camp and the opportunity to see kids age beyond their years because this illness steals their childhood but camp offers them that week of acceptance and to feel normal. 

I believe each student was able to have some understanding and empathy towards those living with diabetes and it will help them be better pharmacists because of the experience. As written in the purpose of the assignment: "the insight you will gain by doing this assignment will be just as valuable, if not more valuable, than any information you will learn out of a textbook or in a lecture."

The next phase is applying to work under the Professors at camp. The applicants undergo an interview process and background check before a position is offered to them. It will be such a hard decision as they were all eager and excited for the chance to volunteer and we can only choose a few of them. As a parent to two type 1 daughters, I can't thank these beloved Professors enough for the experience they have offered these students. They are making a difference in the world! 

Our Pharmacy Team from 2016! 

Celebrating Friendship

Today I woke up to a post on Facebook from a very special friend. You know those posts on Facebook that say "Today you are celebrating xx years of friendship with insert name of person here"? 

My special friend is my diabetes mentor, Lora. While Facebook says today is our 8th year of friendship, this June we will celebrate 12 years of actual friendship. Back in 2005 when our then 4 year old daughter was diagnosed with Type 1 diabetes our family was in a state of shock. I was given a stack of papers from a social worker at our local Children's hospital with instructions to read them and fill out if necessary. In my desire to do and learn as much as I could, I did. 

One of those papers was a flier advertising a mentor program. Perfect! Someone who could talk me through this crazy new life of ours. I filled out the paperwork and within a week or two my phone rings. It was another mom, Lora, who also had a daughter the same age as mine who had Type 1 diabetes too. 

I know we must have talked for a while (we both are talkers!). But there are a few things that still stick out in my mind as to what she shared. 

1. A1C results = do NOT sweat

2. Cheetos 

3. Local support group

For those of you in the non-diabetes world an A1C is a test result that measures the average blood sugar over the past three months. AKA: the parent report card. Many parents have great anxiety over this number. Because of Lora, I do not. I didn't even understand what an A1C was 12 years ago when I first talked to her but I remember her telling me not to stress out about it. It is a number. A snapshot. It's information that will help your endocrinologist determine insulin adjustments. It is NOT a report card on how well you take care of your child with diabetes. As a parent you do the best you can in stepping in as a pseudo pancreas! I didn't even know what a pancreas was until diabetes! However, I am so thankful for her words. She set the tone of how I handle this information and in turn how I serve as a mentor to others. 

 

Cheetos. Yes, Cheetos. Let me explain. For those with diabetes we must count carbohydrates in order to determine how much insulin to give for food. You can do this several ways. You can measure with a food scale or measuring cups. You can purchase single serve food or you can hand count your food item. If you decided to hand count your food item imagine counting out 21 Cheetos. Have you seen Cheetos?! They come in all different lengths and sizes. What constitutes 21 Cheetos?! OMG! And if you get to the crumbs at the bottom of a Cheetos bag...what to do!?! I didn't truly understand what Lora was talking about until I bought a bag of Cheetos and decided snack bags were the way to go. Seriously...you'll never look at Cheetos the same way again! 

I was lucky enough that Lora happened to organize a monthly support group for kids and their families dealing with diabetes. She came up with the content, speakers and locations each month and it was life changing. Walking into the group the first time was intimidating. They were talking about things that I didn't understand but throughout the months and years of meetings they were a source of knowledge for when our daughter was ready to try something new in her diabetes care. 

Over the years Lora and I worked on many committees together and have watched our girls grow up. Then in 2012 when our then almost 18 year old daughter was diagnosed there she was again, calling to check on me.  While I don't get to see her or talk to her as much as I would like we are able to pick up where we left off. 

Lora, thank you for your encouragement, support and understanding all these years. Your friendship means the world to me and my family. I hope that each of you who read this post have that someone you can remember back to and thank for their support.

A New Year's Declaration

I'm not big on New Year's Resolutions. I figure if there is something I need or want to change then I'll just go ahead and do it. I don't need a new year to start something new. What I do like to do is a New Year's Declaration or Theme, if you will. I think about the opportunities that might present themselves to us in the year to come and declare it. For example; in 2012 I declared it "The Year of Travel". We had several opportunities to travel both separately and as a family to different conferences for each chronic illness and even vacationed for the first time as a family of 5 which included a straight drive from Ohio to Florida and one big suitcase full of diabetes and hemophilia supplies (never mind that we haven't taken a vacation since)!

For 2017 we have declared it "The Year of Prayer". We will have significant changes this year. Joe will be losing his job at a company he has worked nearly 20 years at this coming Spring. Our eldest will be marrying her High School sweetheart this fall and beginning a new chapter in her life while we both learn how to transition from little girl to a married grown up daughter. Our middle daughter will be driving, exerting her independence and trying to learn responsibility even more as she manages her diabetes while driving, gasp...a stick shift!! My non-profit job is never guaranteed as I see budget cuts, more demands on procuring funds and hiring freezes...it's an uncertain time. And who knows what curves our chronic illnesses will throw our way. While some of these things can and will be scary (for the record: we are SUPER EXCITED about the wedding!! We love or future son-in-law!) I am excited to see what journey these changes will bring. All of the above is beyond our control. We know whats happening and we can't change it but what we can do is pray.

We can pray for peace and guidance.

We can worry less.

Don't misunderstand...We are not a do nothing and hope for the best type of family. We are active prayers. This means that we will be actively searching for opportunities. Our eyes and ears will be open for ALL possibilities.  We will pound pavement. We will use our connections. We will pray.

We are friends will all walks of life. Believers and non believers. But no matter if you are the praying type or the send good vibes type we will gladly accept any prayers or positive thoughts you are willing to share.

What I love to do...

One of the things I have always loved to do is write. Even when I was younger I would keep journals. I was a writer for our community paper in junior high and would share album reviews in the paper at college. As life moves along and I became busy with marriage, kids and chronic illness I didn't even think about writing. But as I found myself at home dealing with a newborn in 2008 with a bleeding disorder I found some solace in reading others blogs. 

I found my voice. 

I began writing for the Blue Heel Society and sharing my perspective and thoughts about diabetes (collectively with 3 fabulous people in the diabetes community). I was also able to share my story when our eldest was diagnosed. I then began writing for Captain Jackson's Hemophilia Adventures and sharing my perspective and thoughts about bleeding disorders. I found great stress relief in pounding on my keyboard. My mind was full of random thoughts and feelings that needed to get out and writing helped me do that. I also wanted to make sure that others in both communities never felt alone. But, life happens. The kids got older. I started working day shifts. I just didn't have time to write. 

I missed it. 

Mindlessly scrolling through Facebook the other day I saw a calendar that Jerry Seinfeld used to help motivate him to write daily. I LOVED it. I thought it would be a great challenge for me. Kinda the "put it on the calendar like an appointment and you're more apt to do it" philosophy. So in the final hours of 1-1-17 I'm submitting my first blog entry of the year. Here's to a successful writing year!