#TBT #dblogweek Day 4: The Diabetes Stuff That Brings Me Down

It's day four of Diabetes blog week.

Today's topic is a #TBT from the 2014 Diabetes Blog Week. It's all about emotions and diabetes - the diabetes stuff that brings us down - and what brings us back up.  

May is Mental Health Month - diabetes impacts our physical and mental well being. Depression and diabetes go hand in hand - talking about it is key -as is know that we aren't the only ones who struggle. 

Seeking help and support from friends and professionals can only help. 

########

There's so much about diabetes that brings me down.

The fact that diabetes is 24 X&, 365 days a year with no time off for vacations or good behavior and causes me to experience diabetes burnout more often than I’d liked

The stress that diabetes puts on me (both physically and mentally,) has the ability to make me feel like Atlas - and sometimes I fear that the weight will cause me to topple. 

Add the stress that diabetes has put on my family, and my friends with and without diabetes, and it is easy to become the girl with the weight of the world on her shoulders

. 

The fact that the public, for the most part - never gets diabetes right, and the same can be said for diabetes and the media. 

Diabetes Media Muck-ups put all of us on the defense and has us perpetually correcting the population. 

Don't even get me started on blood sugar craziness!

Then, there’s the people I’ve loved and lost to diabetes - I miss them them terribly and when I think about diabetes cutting their lives short it makes cry and makes me relive the grief of losing them.

Losing friends to diabetes is fucking hard.

Losing my sister Debbie to diabetes was fucking excruciating. 

Seeing my parents hearts break because they lost their child to diabetes was devastating. 

It changed our lives and our family dynamic forever - and to this day, we are are still dealing with the ramifications of Debbie's death.  

Personally, there are moments when I wonder the type of person I would have been and the life I would have led had diabetes not taken Debbie from us. 

And on those days, when diabetes brings me down into the darkness - light peaks through the darkest of clouds, and I am reminded of the gifts that diabetes has brought me.  

Those gifts are you. 

Our community, the Diabetes Online Community, has given me so much support, friendship and love. 

My diabetes friendships that span the globe, enrich my world, and have given me a strong sense of self and determination. 

Diabetes has given me a voice and requires me to speak up for myself and for the people I love. 

Diabetes (and my mom,) taught me to pull myself up by bootstraps and pull myself out of the muck. 

Sometimes on my own, other times I can’t do it alone. 

And in those times when I am struggling to stand up in, and get of the muck the most,  the Diabetes Online Community lifts me up, dusts me off, and acts as my compass and travel companions on the road to better. 

And I am grateful for the gifts. 

****FTR, I know I missed day 3 of Diabetes Blog Week. 

I will make it up and post, but I didn't want to get behind on day 4, too! 

#IWishPeopleKnewThatDiabetes

Today's post is inspired by Kyle Schwartz, a third grade teacher in Denver Colorado who created a trust building lesson plan for her third grade class called. “I wish my teacher knew.” 
The honesty in the notes the students wrote are going to hit you in the heart.   
Kyle shared some of her students notes on twitter with the hashtag, #Iwishmyteacherknew.  
Soon, thousands joined in the conversation and many teachers feel that Schwartz lesson plan changed the landscape of the classroom, encouraging trust and honesty between the students and teachers. 
According to interviews, Schwartz hopes that #Iwishmyteacherknew will encourage a dialogue that will help teachers connect students and their families with resources they need.
I've given the Kyle's trust building lesson a diabetes spin a'la "I wish people knew that diabetes.....," and with the hashtag -  #Iwishpeopleknewthatdiabetes. 
Hopefully you can relate and share your own wishes~ 
######

#IWishpeopleknewThatDiabetes

 I wish people knew that diabetes is lot harder than PWDs (people with diabetes) make it look. 
 I wish people knew that diabetes is NEVER ENDING - and that I haven’t had a day off from type 1 diabetes in 13,690 days  - nor did/do I get time from diabetes for good behavior, national holidays, weddings, funerals or mental health days. 

I wish people knew that diabetes is hard - REALLY HARD - and that there are days when the last thing I feel like dealing with is diabetes - but I don't have a choice, so I do. 

I wish people knew that diabetes can be exhausting. 

I wish people knew that because of diabetes, when I look at the food on my plate I see numbers first, food second.

I wish people knew that diabetes wasn't my fault.

I wish people knew that diabetes IS NOT a character flaw and that all people living with diabetes and regardless of the type, are amazing. 

I wish people knew that diabetes makes me cry sometimes.

I wish people knew that my diabetes has caused me a tremendous amount of guilt since I was 8 years old.

I wish people knew that diabetes causes me to say "I'm sorry," even when I'm not. 

I wish people knew that even when you do everything right with diabetes, your blood sugars can still eff with you. Same goes for diabetes complications.

I wish people knew that people with diabetes usually have a really twisted sense of humor.

I wish people knew that diabetes complications can happen - And that people shouldn't judge someone because of their diabetes complication(s).

I wish people knew that people with diabetes can have, had are having children - And that throughout the ages, PWDs have become parents. My two aunts with type 1 had children in the 1950's, so did my dad. My oldest sister with t1 had 3 children in 1976, 1980 & 1990.  
And that today women with diabetes in the DOC and beyond are having boatloads and boatloads of beautiful children - and those wonderful women with diabetes worked (and are working,) damn hard to deliver those beautiful and healthy children. 

I wish people knew that diabetes is not the reason I don’t have children. 
Life is the reason I don’t have children - it doesn’t mean I didn’t want them, because I did and I do and that it breaks my heart that I don't.
But if diabetes is the reason for someone not having children - You shouldn't judge or ignore them for not having children, diabetes or not - And you should remember that for many, it's a very personal and potentially painful subject. 

I wish people knew that I am more the sum of my parts- including my beautiful, busted pancreas. 

I wish people knew that diabetes gives you boatloads of strength and empathy. 

I wish HealthCare Professionals who still tell their patient(s) with diabetes that they "noncompliant," would stop using that term - it's offensive and defeatist and most likely will not garner the effects the HCP was hoping for hoping for. 
I wish they'd say: I know you struggle with your diabetes - lets make a game plan and work together to get you up to speed.  

And I wish they'd go a step further and let their patients with diabetes know that they are not alone and suggest seeing that they see a Certified Diabetes Educator and a therapist. Encourage them to join online communities & read diabetes blogs so they can find peer support and encouragement. 

I wish people that just because I wear an insulin pump, doesn’t mean I have the bad kind of diabetes - It means I have the kind of diabetes that makes shit gold ingots. 
Kidding! It just means my body doesn’t have the ability to produce insulin.

People with diabetes need insulin to live - and I’ve found that wearing a bionic pancreas clipped to my hip works for me. 

I wish people who worked for my insurance company realized what an infusion site actually was BEFORE they denied me my fourth box of infusion sets. 

 And I wish people who worked at health insurance companies realized that like a person who makes their own insulin, my body requires a different amount of insulin EVERY DAY - And that tile floors can and most almost always bust insulin bottles BEFORE your days before your refill is due.

And I wish my insurance company (and yours) realized that a 30 days worth of pump supplies does not equal 10 infusion sets - because life, in the form of deadspots, doorknobs, SPANX, exercise and million other things get in the way and 10 X 3 most certainly DOES NOT = a 30 day supply.

I wish people knew that the cupcake I’m just about to eat required copious amounts of testing my blood sugar and carb counting - and I will continue to test my blood sugar like a mad woman for hours, afterwards. 
And yes, I can and will eat that cupcake, because I’ve done the work to eat that cupcake. 

I wish people knew that cutting out white foods, drinking miracle water and downing massive doses of cinnamon WILL NOT cure my diabetes. 

I wish people knew that insulin is NOT A CURE for diabetes, but insulin has saved millions of lives and I'm grateful to have access to it every damn day. 

I wish people knew that insulin is lifesaving and that there are so many people around the globe who desperately need insulin, but don't have access to it. 

I wish people knew that after 90 plus years, insulin is still ridiculously expensive  - even if you have insurance. 

I wish people knew that diabetes is indeed a family affair and that parents, siblings, spouses, extended family, and friends who are family, have their own diabetes challenges and struggles. 

I wish people knew that every person with diabetes does try - and that my sister Debbie did try - she just didn’t have the right emotional tools or diabetes technology back in the Diabetes Dark Ages to succeed - And I wish I'd realized that sooner and had been more patient.

I wish people knew that diabetes and blood sugars factors aren't so cut and dry as most think and I wish people knew that there are at least 22 things that contribute to blood sugars. 

I wish people who wrote sitcoms actually wrote funny/truthful diabetes jokes, instead of offensive and stereotypical jokes. 
Diabetes is not punchline and your offensive jokes directly affects funding for the diabetes cure. 

I wish people, including healthcare professions, knew that the diabetes online community exists and is beneficial to every person living with diabetes and their loved ones. 

I wish people knew that diabetes requires emotional support as well as insulin. 
I wish people knew that Diabetes Burnout is REAL. 

I wish people knew that the only thing I can’t do because of my diabetes is make insulin, everything else is GAME ON. 

I could go on, but I want to know about what you wish people knew about diabetes - I'd really love and appreciate your thoughts on the subject - lets get the dialogue going! 


Addendum: On Wednesday, April 22nd, YOU CAN KEEP THE CONVERSATION GOING. 

Also, please checkout http://mydiabetessecret.com  - a place to share heartfelt & anonymous D secrets in a safe/supportive environment. 

#tbt Diabetes Style: Multi Purpose Tongs That Boiled Needles, Flipped Bacon & Caused My Dad To Break Into O' Sole Mio"

My mom and or my dad would stand over a little tan pot with a dark brown handle filled with boiling water, one eye on the clock  & with these tongs in hand. 

My folks were still in the habit of sterilizing needles, even though by the time I was diagnosed disposable needles had hit the market and were the norm. A throwback practice from the days when they only had two children with diabetes instead of three and needles were made of glass and sharpened with a stone slate .
And in some weird way I think they found the ritual comforting.
These were the very same tongs that after being washed, worked their magic flipping bacon for 6 children and two adults.

God, it's funny what you remember about growing up - And growing up with diabetes. 

Today, these ancient tongs are still used every now and then - Like when my “real tongs” broke and lost their springiness while I was right in the middle of a veggie stir fry extravaganza. And they can still flip bacon like a badass and with chef like precision.  

Mostly though, I keep them around for what and who they remind me of. 
Also: These well worn tongs were the subject matter of a post from January of 2012 - Which I've reposted below in honor of #tbt - And the people who they remind me of every single time I look at them~
####

Diabetes Memories: Boil, Boil, Toil & Trouble - Of Boiled Insulin Needles & Other Diabetes Givens Growing Up~

With three people with diabetes growing up in the house, (four if you count my oldest sister who got married when I was 4) things got pretty crazy, not to mention expensive.

And there were certain diabetes givens in the Kunik household

Like my dad kept his insulin in the butter compartment in the fridge in the utility room, while my sister and I kept our insulin in the fridge in the kitchen.

My dad used Lente as his long acting insulin and I used NPH - And I think my sister did too.

I remember my dad, Debbie and I always busting out needles before we ate our meals, right there at the table - no matter who was at the table. That was our diabetes reality and if you ate at the Kunik table, you were bound to see some hypodermics being injected before the main course.

I remember glasses of orange juice measured out perfectly to treat a lows and the the anxiousness in which we drank down that orange juice.

I remember Tab and Fresca and Diet Pineapple Fanta and diet Orange Shasta always being on hand - Same goes for Diet Pepsi.

I remember that when I was first diagnosed, I used Sweet N Low in my cereal, while my father used something called Sweeta - A liquid sweetner that I thought was heinous.

And those are just a few of the many diabetes memories that enter my clogged mind on a daily basis!

I also have these very vivid memories of my father (and my mother for that matter,) boiling our insulin needles over the stove in a tiny little tan pot with a brown handle - which is something they started doing way before I came to be.

Because back in the Diabetes Dark Ages, needles were made of glass and required boiling and sterilization before each use. So my parents spent of time pre Kelly boiling needles over the kitchen stove.

By the time I was diagnosed, needles were disposable and came in boxes filled with at least a hundred. But my dad still boiled mine to make them last longer, which taught me a few diabetes lessons early on. Lessons like:

1. The numbers and lines on the needle started to become faint and difficult to read after it’s been boiled a few times
2. Much like “blunt lancets,” the more you use a needle (after you boil it, of course) the more blunt it gets!

My eight year old self would have major arguments with parents regarding boiled needles and how much they sucked.

And I remember my dad talking about the cost and then singing an intangible and entirely made up english version of O' Sole Mio in a mock yiddish accent while boiling the needles and waving the tongs around to make me laugh and get me off the subject.

Looking back now, I realize how much they had on their plate - And I’m still amazed at how they did it all.

And I’m reminded how far diabetes care has come - And how O' Sole Mio no longer applies~

Do you have any diabetes memories from growing up with diabetes?

In Life With Diabetes, Small Medical Advances Aren't Small At All - Nor Are They Gadgets~

Gadget: A mechanical contrivance or device; any ingenious article

1. A small mechanical  device or appliance 

2. Any object that is interesting for its ingenuity or novelty rather than for its practical use.

Synonyms: Contraption, whatsis, dohickey, thingamajig dictionary.com

Insulin pump: A pump for delivering insulin in order to achieve tight blood sugar control and lifestyle flexibility while minimizing the effects of low blood sugar (hypoglycemia). The pump is composed of a pump reservoir similar to that of an insulin cartridge, a battery-operated pump, and a computer chip that allows the user to control the exact amount of insulin being delivered. The pump is attached to a thin plastic tube (an infusion set) that has a soft cannula (or needle) at the end through which insulin passes. This cannula is inserted under the skin, usually on the abdomen. The cannula is changed every 2 days. The tubing can be disconnected from the pump while showering or swimming. The pump is used for continuous insulin delivery, 24 hours a day. The amount of insulin is programmed and is administered at a constant rate (basal rate). Often, the amount of insulin needed over the course of 24 hours varies depending on factors like exercise, activity level, and sleep. The insulin pump allows for the user to program many different basal rates to allow for this variation in lifestyle. In addition, the user can program the pump to deliver a "bolus" during meals to cover the excess demands of carbohydrate ingestion. The pump is currently the closest device on the market to an artificial pancreas.”  medterms.com

YEP, nothing novel about an insulin pump - especially if you're the person who's attached to it. And the same can be said for Continuous Glucose Monitors and the accuracy of glucose meters and test strips. 

######

Dear Elisabeth - 

I read your article in the New York Times, "Even Small Medical Advances Can Mean A Big Jump In Bills.  I’ve marinated on it for a few days and honestly, I’ve struggled with my response.  

I agree that the cost of diabetes and diabetes technologies is high (and has always been in the 36 years that I've lived with t1 diabetes,) and I'm well aware that diabetes is BIG BUSINESS. 

I find the cost of diabetes to be incredibly expensive - even with insurance - And I worry about my financial future. 
I worry about everyone living with diabetes having to deal with the same issues and concerns that I do. The financials keep me up at night. And I believe that things need to change regarding the cost of living with diabetes. 
I hesitate to start the paperwork on a new pump or CGM (Continuous Glucose Monitoring system) with my insurance company because of all the work it requires - And I'm worried about the out of pocket expense.  

BUT, as someone who hasn’t had a day off from her type 1 diabetes in 13,230 days and who knew many of the casualties of the Diabetes Dark Ages by name and personally, I'm here to tell you that my quality of my health and the quality of my life has improved greatly over the years since the advent of diabetes technology. 

And I know that my future good health depends on diabetes technology, highly engineered insulin and anything else that:

1. Keeps me alive
2. Reduces the risk or helps to limit future diabetes complications
3. Gives me a better quality of life with diabetes.

In your article you stated: That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific. 

I found that statement to be callous and sensationalized and a huge over simplification of the many benefits of diabetes technology - Actually, you glossed over the benefits, BIG TIME.  
But I did and do relate to the frustrations re: to the integration and purchase of diabetes weapons. 

Still, make no mistake - Glucose meters, test-strips, Insulin Pumps, CGMs, fast acting insulin, etc., are weapons when it comes to living with diabetes - crucial ones that help us navigate the ever changing terrain of the diabetes battlefield. Without them, we'd lose the D war. 

Elisabeth - Your article made it seem as if people with diabetes didn't need or benefit from D technology  - And that's not true. 

Here’s the thing: Unlike many chronic illnesses, a large portion (8,757 hours  a year - give or take a few hours) of my type 1 diabetes care is in MY HANDS. 

So yes Elisabeth, people with diabetes absolutely need all the help we can get! 

And people with diabetes need glucose meters that provide us with graphs that chat with both our insulin pumps and our CGMs - Glucose meters and test strips that are accurate in order to properly calculate insulin via pumps, shots or CGMs and we and require fast acting insulin that quickly correct elevated blood sugar and allow us to eat when a meal is ready, instead of 20 to 30 minutes after taking it. 
And those people with vision issues because of diabetes need and require glucose meters with an audible voice. 

Personally, I would NEVER entrust my life, my health or my future health to mere gadgets Sidebar: Please refer to opening paragraph for the definition of the word gadget. 

Life and life with diabetes is far to complicated for novel gadgetry. 
Nobody living with diabetes and regardless of the type would rely on simple gadgets - But it would be great if we could. 
For those of us who remember The Diabetes Dark Ages, the time before insulin pumps; CGMs and glucose meters, life with diabetes had less precision, less flexibility and was more complicated - And led to more diabetes complications. 
We tested urine instead of blood,(disgusting and far from accurate,) had only a few types of insulin to choose from. And as far as the diabetes diet back then, it was anything but flexible. 
God, we would have given anything to have diabetes technology and fast acting insulin available to us! 
Technology like insulin pumps that allow for the customization of insulin delivery and more glucose meters/test strips and Continuous Glucose Monitoring systems and the advent of  analogue insulin .
The creation and availability of analogue insulin changed our lives for the better and allowed better glucose control, i.e.,blood sugars and meal time flexibility. 
All, key weapons for those of us doing battle with diabetes on a daily; yearly, weekly and decades, basis.

In the 1980’s, when my family and I received our first glucose meter - which cost hundreds of dollars; wasn't covered by insurance and was shared by the whole family shared, my parents, (my dad had t1) sister, (also a t1) and I had to meet with our pharmacist to learn how to operate the meter. 
The meter was the size of a VHS tape, took 3 minutes to calibrate and had a 44 page instruction book. There was nothing portable or convenient about it - And it was far from accurate - But it was more accurate than urine testing - And we were grateful for it.
A few years after we purchased our first meter, I lost 2 of my aunts to type 1 diabetes- they were in their early 50's. 

And I believe that if my older sister Debbie had diabetes technology available to her when she was diagnosed as a child( in the late 60’s,) or even as a teen, she wouldn’t have died from diabetes complications. Complications including; heart attacks, gastroparisis, multiple strokes and kidney failure, 22 years ago at the age of 34. 

I miss my big sister and I think about her every day - And I wish that she would have had the diabetes technology that I have available at my finger tips today - And clipped to my hip since 2002. 
And I will continue to advocate for people living with diabetes - And I'll fight tooth and nail to make sure that we've left the Diabetes Dark Ages forever. 
Sincerely, 
Kelly Kunik
t1 Person with diabetes for 36 years.
Diabetesaliciousness.blogspot.com
@diabetesalish

Diabetes Complications & Judging One Another~

For the record, I love D moms and dads - I LOVE THEM -And I learn from them every single day. 
Also: You never know what a person is carrying around with them - diabetes or not - so leave your judgment at the door and keep your heart filled with empathy and compassion. 
######
I was talking to a DParent I’d literally just met minutes earlier while attending a friend of a friend’s get-together a few weeks back. We’d been chatting for all of about 16 minutes when DParent said something like: Well.. You don’t have any D complications... do you?? 
I mean you took care of yourself....You did what you were supposed too...Right? 

And in that moment my heart hurt so much I thought it would break.
It wasn't the first time a person (or a D parent - or a person with diabetes for that matter,) had said those very same words. But no matter who says it, it hurts to hear if you've been in the diabetes game for decades - And the D judgement from your own, even when it's unintentional pierces your heart and puts you on the defensive. 

I was simmering and I didn't want it to boil over to the surface, nor did I want to flip my Diabetes Bitch Switch. 
I didn't want to fight, especially with one of 'my own." 
I’d just met DParent. I couldn’t even remember her last name - And I probably would have answered her question if I hadn't felt it was dripping with diabetes judgement - And I knew that she didn't hear the judgement in her own words.

I wasn't just mad at the question. I was mad at my 14 year old self for sins committed long ago, when I blamed my sister Debbie for her diabetes complications and her alcohol issues. 
I was mad at my 20 something self and her skewed view of people with type2 diabetes that was less then kind and understanding.

And I was mad at myself for what I could and or should have done in my own diabetes past. 

Knowing what I know now about diabetes in all dimensions, diabetes and depression and diabetes burnout verses what I knew then brings all sorts of emotions and D guilt to the table.
I took a deep breath, looked D Parent in the eye and calmly asked: Why do you think that people with D complications didn’t try their best with the tools they had at the time?
Seriously, would you think less of me as person if I told you I did have D complications than if I didn’t?
D Parent: Well.... It’s just that people with diabetes comp…. 

And I stopped her right there. 

Me: It’s not so easy to scrutinize someone with diabetes complications when you take a look at the history of treating diabetes. 
When I was growing up,(and pre - me for that matter,) in the Diabetes Dark Ages, we didn’t have technology like meters and cgms to manage our blood sugars, we tested urine. 
Insulin pumps were neither precise nor compact and they weren’t covered by insurance or available to the masses. Sliding insulin scales, like glucose meters were relatively new (don’t even get me started on accuracy issues,) and there were only 3 insulins on the market when I was initially diagnosed. 
I reminded D Parent that the diabetes diet back in the day was incredibly restrictive and how all of the above made living with diabetes hard - And that it was still hard - even with all the flexibility that today’s D diets have.
And that sometimes that even D technology in all it’s glory makes diabetes even harder to deal with mentally. 

And then I continued rambling and said that in the Diabetes Dark Ages, nobody treated the mental side of diabetes - And no one considered the mental toll diabetes took on a person with diabetes or their loved ones. 
Diabetes Burnout, like diabetes itself and all its forms, was (and by those that are uneducated, ) was and still is, considered a lazy man’s disease and a cop-out. 

And that genetics and sheer dumb luck also comes into play with diabetes and complications.

Me: Honestly DP, don’t we get enough judgement from people who don’t live with diabetes? We shouldn’t judge one another when it comes to diabetes, regardless of the type or the diabetes complications. It isn’t PWDs (people with diabetes) sans complications verses PWDs with complications. 
We have to help one another, not judge one another for what we did or didn’t do in the past. We have to focus on what we are doing now to help our future.

And then I took a breath and D Parent looked at me with glassy eyes and apologized. 

DParent told me that she’d never considered all of the above. She was less than 3 years into her son’s life with diabetes and that most of what she’d been told about D complications blamed the PWD or the parents of the PWD and that she was still learning - And that it was hard and that she was scared. 
And her words allowed me to look at her with new eyes - And myself. 
I gave DParent a hug and told her that even with 36 years in, I was still learning too. 
And that my D passion might easily be mistaken for judgement - And I really hoped that wasn't the case, but if she felt at all judged,I was sorry and that she was doing a great job and to hang in there. 

 And then we smiled at one one another as we held each others hands. 
Then the talk turned to the snack spread and guessing the bolus for the spicy hot-wing dip, which eventually led to talk of the DOC and before we knew it an hour had gone by. 
In the end we both left the party with new perspectives and new lessons tucked in our hearts and our heads -  And with a new friend's digits in our smartphones~   

Of Temporary Basal Rates, Burgers, Bread Baskets & Friends Who Worry~

I met up with a large group of friends at a new bar/restaurant a few weeks back, and the minute I walked in the joint and saw the 8 inch high burgers( insert sex/meat joke here. Also, THAT'S WHAT SHE SAID, ) and Belgium fries pass by on the server's tray,  I started a temporary basal rate of 30% - Because I was going to need it! 

More and more people were arriving and our party was getting better. We went from a table of eight, to 3 tables for 16+ people and we hadn't even placed our food orders yet. 

So a few of us that wanted to get on with the business of ordering decided to go ahead and order & get a separate check for the 5 of us. 

And I casually mentioned that I was on an increased temporary basal rate in anticipation of the burgers and didn't feel like waiting an hour before I placed ordered because: 

1. I was hungry

2. I was hungry and I didn't feel like waiting

3. I had taken extra insulin via my amped up temp basal rate.   

And that would be when my 2 friends immediately started to worry in stereo.

Friend A: Do you need food, because I could go grab some bread.

Me: No, I'm fine. My blood sugar was 170 when I tested a few minutes ago, I'm great!

Friend B: Are you sure? I could get you some orange juice. 

Me: Thanks, but honestly, not a big deal. Also, I have glucose tabs (Cherry Glucolift to be exact,) just in case.

Friend B: Here- I have a cough drop - it has sugar in it. 

Me: My cold is almost gone, but thanks.

Friend B: Not for your cold, for your blood sugar. 

Me: Oh... Ok. Honestly though, I'm not hungry, but thanks.

And then I took the cough drop from her hand and ate it, even though I really didn't want to, because I thought it would make my friend feel better. 

Small chit chat followed and Friend A excused herself and 5 minutes later she came back with a basket filled with hot bread and butter. 

Friend A: Hey - I got bread from the waitress.

Me - feeling guilty: I'm fine & you really didn't have to do that. I'm getting a burger and fries, I shouldn't eat bread, but thanks.
Sidebar: Turning down bread is so damn hard!

Friend A: I got it for me, not you. 

Me: OK, cool. But thanks anyway. Also, I know you got it for '"us," emphasis on "me." 

Friend A: I can't help it, I worry about you. 

Friend B: It's just how we are - we love you - we don't want you to go low or get sick .

The 3 of us had been friends since college, they'd known my sister Debbie and they were good to her. And there were days when they could deal with her being sick better than I could. These women (they were sisters,)  loved my parents and my family and I consider them family. 

And their concern made me grateful, happy and slightly sad all rolled into one. 

I was incredibly grateful for my wonderful friends. 

I was happy because having said wonderful friends who get and accept you - regardless of your busted pancreas are more precious than gold. 

And I was a slightly sad because I was the one who was making my friends worry - And I that made me feel slightly guilty. 

15 minutes later and 10 minutes before my burger arrived, I bolused for my food, including two slices of dinner roll. Not because I wanted to and not because I had to, but because the diabetes guilt was creeping in and I could tell that my friends were still a bit anxious.
And lets be honest, turning down bread is not an easy thing to do - AND IT COULD BE SO MUCH WORSE. AND IT WAS DELICIOUS!  

Diabetes guilt or not, good friends are gifts - And I am one lucky duck, indeed. 

NEWS FLASH: Transitioning To Adulthood Is A Bitch

On Monday  night I received a PR release in my inbox  about a UCLA Study and honestly, I didn’t know whether to throw something against the wall in anger or laugh out loud or do both. 

The UCLA Study is all about children with type 1 having a tough time making the transition from their peds endos to an adult endo. 

They followed children for years and noticed this SHOCKER: Young adults with diabetes have a really rough time transitioning from their peds endo to an adult endocrinologist.

YA THINK? 

When I posted the link on Facebook other former children with diabetes chimed in and agreed that this information was: 

A. Nothing new

B. Infuriating and comical at the same time

C. Bullshit 

Had those conducting the study taken a little time to  listen former children with diabetes who are now adults living with diabetes wax poetic about problems transitioning  to adult Endos? Because they would have realized that this is NOT a new problem - It's almost a damn near standard problem across the diabetes board that needs to be fixed - Immediately! 

Transitioning from a child to an adult is a bitch without a chronic illness, but add diabetes to the mix and it’s whole other shit storm to deal with. 

I didn’t want to jump the gun, so I put a call out on Facebook about former cwds switching to adult endos and the response was GREAT (So much so that THIS awesome blog post from Melissa at SweetlyVoiced came out of it,) and my post with DOC responses will be up soon. 

Also, I picked up the phone on Tuesday and called UCLA & I emailed Dr. Lotstein (the Dr. doing the study) a detailed email that afternoon and asked her the following questions: 

1. Transitioning from Peds to adult Endo's has been a huge issue for patients with diabetes for decades, when did Dr. Lotstein first notice the issue?  

2. Has Dr. Lotstein talked with former children with diabetes who are well into adulthood and living with diabetes regarding transitioning? 

3. Will the second phase of the study be as long the first, what types of support systems will be studied & is the Diabetes On-line Community being considered as part of the support system? 

4. How many phases are in the study? 

5. How much money is being/will be spent on the study? 

6. How do you plan to incorporate what you've learned in the study into a real life and when?? 

For the record, I have yet to receive an answer from her. 

And for the life of me I don't understand why YEARS are being spent studying this phenomenon when there are literally thousands and thousands of adult examples of this very thing. 

Why not take the money that’s being spent on a multi-phased study and develop real time solutions in the form of patient support groups, family psychologists and HCP liaisons to help with the young adults who are no longer children with diabetes, but who are young adults who need to transition to an adult Endo. 

The waste of the study participants valuable mental and physical health is all I can think about! 

Why am I so passionate about this?  Because I know what happened to me.

I went to Children’s Hospital in Philadelphia (CHOP) every three months like clockwork from the time I was diagnosed at age 8,  until I was almost 20 - When they finally kicked me out. 

I remember crying and begging them to let me stay. 

Diabetes was hard, and my Peds Endo & company were like family - They were all I’d known in my life with diabetes. 

And even when I wasn’t the perfect child with diabetes - they still loved me - And they cared enough to let me know when I needed to do better. 

And at the time of my switch I wasn’t doing great with my diabetes. 

I think my a1c was somewhere around 13 - MAYBE. 
It was the Diabetes Dark Ages, my family shared one meter that took 2 minutes and at least half a liter of blood at each sitting. 
There were only two kinds of insulin on the market and the rules of diabetes were entirely different. 
And I was struggling with so much change in my life,  not to mention I was suffering from a major case of Diabetes Burnout. 

I’d lived with diabetes for almost twelve years at that point - I just wanted to be a normal college kid. 

Turns out my new adult Endo was at the University of Pennsylvania, and he was a big name in the diabetes world. He’d written books, done lectures, and he considered himself a diabetes god. 

Dr. Big Name wouldn’t let my parents come in to the appointment with me - I was an adult and parents were not allowed. 

And I thought that maybe I could handle it - but I was scared. 

When the big day came my father dropped me off and told me he’d pick me up in few hours at the campus bookstore. 

And I remember sitting at Dr. Big Name’s big desk while he looked at my labs for what seemed like forever.  

And I remember starting to cry when Dr. Big Name told me I wasn’t a good diabetic. 

With numbers like these you’ll follow in your sister’s footsteps  - DO YOU WANT THAT? he said sternly.

Me: NO. I’m trying.

Dr. Big Name:  Well you’re not trying hard enough - You’re not disciplined enough. 

You know what diabetes can do, you do know that it’s s killing your sister, don’t you?  

Do you want it to kill you, too?

Do want to do that to your parents? Do you want them to suffer even more? 

And at that point I don’t remember what I said, but I knew I was never coming back to his office, no matter how many books on diabetes he wrote.

I left that office with tears streaming down my face and I remember feeling so incredibly alone, afraid and defeated. 
I felt like I would never own my diabetes so why even try? 

If diabetes was going to kill Debbie, then there was a good chance it would kill me too. 

It took me a good hour to pull myself together and calm down. 

When my dad picked me up an hour and fifteen minutes later, I told him that I was NEVER going back there. 

And I never told my father what Dr. BigName said about my sister or me dying - I knew it would hurt him and I knew he’d get angry and I didn’t want to be the cause of any more diabetes pain for my parents. 

So I just told my dad that Dr. Big Name was an asshole. 

But I thought about What ‘Dr. Big Name the Asshole” said to me for years and years and and well into my adulthood.

And up until I finished college and moved away, I went to my father’s Endo in my small hometown. 

She was a good Endo & tough, and her waiting room was always filled. 

She didn’t make me cry, but I knew I was challenging patient. I was young, most of her patients were not. 

and I didn’t want to be there.  

I was angry about a lot of things back then, including my diabetes.

I was angry that my sister was dying from a disease we both shared, angry and afraid that history might repeat itself, angry about everything. 

It was tough to be an adult, especially a college aged adult with diabetes who tried her best to be “normal.” 

When my sister died, I remember going in for my D checkup and everyone in the office looked at me with pity - And I wanted to be anywhere but there. 

I still had more than my share of shitty numbers in college, but at least I was going to see an Endo.  
And when I finally moved to Philadelphia after I graduation, I found a great Endo - An Endo who talked with me, not at me. 

An Endo who knew I was scared and trying hard - and even gave me his home phone number if I ran into trouble with my insulin sliding scale. And because of that long ago Endo, I finally learned to own my diabetes instead of having my diabetes own me. 
And that Endo introduced to the amazing Dr. J - And because of both of those amazing Endocrinologists my world changed for the better.

But in my heart I know that there was damage done, both mentally and physically in those years of struggle. 

Seriously, how could there not? 

And I wish I’d known that there was a huge number of us who grew up with diabetes that had a really tough time becoming an adult with diabetes - both in the adult Endo’s office & out of it. 

I wish I'd known that it wasn’t all my fault that the transition had been so incredibly difficult.
I wish I'd know that I wasn't bad or terrible - I was just a 19 year old who was trying to be a grown up and figure it all out.... A 19 year old who was trying to find her place in the world. 

And that’s why I wanted to throw my laptop against the wall when I read about the UCLA study. 

Why waste money to prove what we already know to be? 

Instead of spending the money on the next phase of the study, which (and I'm quoting here,) "is to directly follow young adults transitioning to adult care to see what happens as they age and to examine how different types of support aimed at easing the transition affect health outcomes." 

Why not spend the money on hiring people to help with transition from pediatric endocrinology to adult endocrinologists? 

Why not create markers that can be put in place in real time and across the country to help people? 

Why not be the change that we all want instead of spending money to eventually put the changes in place - But lose another diabetes generation in the process?  

You don’t have to be a Rocket Scientist to see the problem, you don’t even have to be an Endo - But you do have to listen and fix the problem- ASAP, because peoples lives and future good health depend on it.