Tuesday, October 18, 2016

I wanted you to know 6 years ago, and today too.

Today is the sixth anniversary of the words I posted below. Today I want you to know that Diabetes isn’t the same in teenagers as it is in children. It isn’t the same in babies as adults. There are seasons to this disease, and where you are now is just that: a season. The worry will change and it will evolve. I want you to know that hard times don’t last forever. I want you to know that everyone experiences the Diabetic Life differently; our emotions ebb and flow differently too, and that’s ok. I want you to know that as hard as it can be, it gets better. I promise. They don’t grow forever. They don’t rebel forever. I want you to know that even though I’m not blogging as much, you’re always on my mind and you’re part of my heart. All the words below seem written forever ago. Some people need to read them today. I want you to know, I’m posting this for you.

There are a few things I want you to know.

I want you to know, when your daughters pump ran out of insulin within the first hour of school last week…I have felt that very same anger and embarrassment that you did.

I want you to know, when your baby wets his bed at night from a high blood sugar…I have felt the same sadness, guilt, and love for my son that you do.

I want you to know, when you forget to bolus your child for dinner, and their bedtime number is 508. I have felt the very same shame and intense regret.

I want you to know, when you take out your daughters set and there is a bleeder, I have felt the same horror and sheer panic that you are experiencing at that same moment.

I want you to know, when your son goes to a friends for a sleep over…I know you have to actively push the worry and anxiety away or you would be camped out in your car outside the house…because I have had to do that too.

I want you to know, when you have had a long night and you see the mountain of bloody test strips and apple juice containers…I have felt that deep sadness you had in your heart. I didn’t want this for my children either.

I want you to know when your child has high blood sugars for DAYS…I know the pure frustration of it all. I know the anger and the helplessness that you are feeling.

I’m tired too. 

I want you to know, when there is an extreme low, and your child is sitting with a blank look in front of you, barely able to speak…I have been there. I have felt the confusion, the panic and the deep worry that you have in your heart.

I want you to know that I stand in the doorway to watch my children breath in the morning too.

I want you to know that I worry about my oldest being diagnosed. I know you worry about your non diabetic children too.

I want you to know that I wonder if my children will hate me one day for all I have put them through. And even though they say they don’t blame me…I still worry about it. I know you do too sometimes.

I want you to know; when your child hasn’t been invited to anyone’s house to play…I know it isn’t fair either. 

I want you to know, when your child put her set in for the first time on her own, and you thought you would burst from pride…I have felt the exhilaration of that pride too.

I don’t recognize myself in the mirror either.

I want you to know, that even though I have been to too many endo appts to count…I still get a stomach ache days before. I want you to know I am hard on myself too.

I want you to know, when your child calls you from school, and asks to eat a “surprise” birthday cupcake, and you say yes…I have held my breath too, hoping I have guessed the carbs correctly.

I want you to know I check my sugar whenever I have to pee twice in a two hour period. I wonder if you do that too?

When I see a person in the store with a pump, I want to run up and talk to that person too. Okay…I want to hug them too.

I want you to know, when your alarm goes off in the middle of the night and you want to throw your alarm clock out the window…I have been there. I have SO felt that.

I want you to know that when I hear of another child diagnosed, I feel anger towards this disease. It brings back too many memories, and makes my heart completely break in half for this newly diagnosed family. I know you feel that way too.

Remember when you walked around like a zombie with dry food on your shirt, and no makeup on for two days? I did that too!

I want you to know, when my child expresses any anger towards this disease, I feel guilty…almost like it is my fault. Even though I know there is nothing I could have done to stop all this…I wish I could take it away too.

I want you to know that I feel conflicted about all of this too. I hate diabetes. I am bizarrely thankful for diabetes. I know it has brought good into our life…but at the same time, diabetes can still suck it.

I want you to know that I secretly wish for a cure too. And even though I tell everyone I don’t expect one…I do.

I want you to know…when you think you can’t go one more day. When you think you can’t check one more sugar, or give one more shot, or tell your child “no” one more time…I have been in that place. I have had days just like that.

I want you to know that I cry in the shower too sometimes. I cry to sad songs on the radio and spend too many days with cry headaches too.

I want you to know that when I read that a child has passed away from Type 1…my breath is taken away too. I want to scream too. I hold my children closer too.

Our pharmacy is a nightmare too.

I want you to know, that the mom at your son’s school...the one who judges everyone and makes you feel awful…she goes to my boys’ school too.

When emotions run high, or low…or upside down...I want you to know I have felt all the craziness too.

I want you to know after the third diagnosis I went through a deep depression for 8 months. But now I’m on the other side of that. If you are depressed, you will come out on the other side too.

I want you to know, that I started this blog for me…and now I want you to know I write it now just as much for you.

Because more than anything, I want you to know that you are not alone.

I want you to know, that even though we are very different, and even though we may not have been friends otherwise…I worry for you. I care about you. I will always support you. 

I want you to know that I will always be here for you.

When you feel alone and like no one understands? I understand. We understand. The Mothers and Fathers and the PWD of the DOC are here for you. 

If you think you are alone on this roller coaster of numbers…please know you are not. Look at that obscenely long blog list I have under the blog buttons. We are there too…puking, screaming, crying, laughing and holding on for dear life. 

We may be so different, but our hearts are the same.

You are a parent of a child with diabetes…and I am too.

Wednesday, September 21, 2016

Rise Up

If you came here for an epiphany on how we can fix the Health Care System in the United States, I apologize forthwith.

I don't have all the answers.

I'm just a mom, who has three children with Type 1 Diabetes.

I'm just a sister, who has a brother with Type 1 Diabetes.

I'm just a cousin, whose cousin has Type 1 Diabetes.

I'm just a sister-in-law, whose brother-in-law has Type 1 Diabetes.

I'm just a friend, who has thousands of friends with Type 1 Diabetes.

I'm just a daughter, who has a mother with Type 2 Diabetes.

I'm just a blogger.

But little me is "just" now standing up, raising my voice above the din of people who say, "It's too big!" "It's too complicated!" "There are so many hands in the jar, where do you start?!" "Change is impossible!" "You're blaming the wrong people!"

I'm not here to blame.

I'm here for accountability.

I'm here today to raise my voice and make the assertion that change is not impossible.

It's only impossible if we do nothing.

We can change things.
(If I could stand on the highest mountain and yell that to greater Diabetes community, I would.)

I'm also not here to get into a debate about Health Care being a right or a privilege. The bottom line is our situation is a bit different than others because the medicine we need access to keeps people alive.

There are few medications in the world that if not taken, would result in death within days.

Insulin is one of them.

It's not Health Care. It's Life Care. (Life Care is a term a friend of mine used recently. I liked the term so I Googled it, and apparently it refers generally to Elderly Care. I'm hereby stealing the term for the greater good.)

Health Care includes preventative care. It helps people reach better outcomes. It is defined at "the maintenance and improvement of physical and mental health."

Life Care keeps us alive. Like a Heart/Lung Machine that keeps the body working during surgery, Insulin keeps our bodies working every minute of every day.

Even so, access to insulin is infuriatingly difficult and expensive.


It's difficult to keep my children alive.

It's expensive to keep my children alive.

My story isn't unique. I asked my Facebook friends if they had trouble accessing insulin. I'll insert here the obvious: I'm not a famous person. I don't have a million Facebook friends, or even tens of thousands...but the response I got was broad and swift.

Insurance companies are making medical decisions. They are not in the room with our, doctors and us, yet they tell us what medications to use. Who gave them this omnipotent power to decide which medicine is best for me or my child? They do this without going over medical history and witnessing firsthand past outcomes.


“My son was forced to switch back to Humalog because insurance refused to cover Apidra. I tried to use that copay coupon but the penalty charged by my insurance was too high for me to cover. My son was a consistent 6.7 to 6.8 A1C for the few years we were on Apidra... it has since consistently gone up, now to an all time high of 8.2 since the switch. Also... The ups and downs are back... Blood sugars are all over the place... Just like they were the first time we were on Humalog”
 “UHC wouldn't cover Novolog.  Insisted that my son switch back to Humalog (which doesn't work well for him.) When we refused, they forced us to use mail order. Now we pay $250 a month out of pocket for just the Novolog. That’s very difficult for us to pay.”
Pharma negotiates prices with insurance companies so that their medications become the carrier's "preferred" medications. As a result, we aren't given a choice on which insulin to use (or what meter to use, or what pump to use...). There are three fast acting insulins. The three are not the same. But the insurance companies do not care; we can have what they say we can have, regardless of the outcomes.

And even if we do use the preferred insulin, the price packs a big punch:
 "I struggle. I'm a single parent and I struggle hard.  With everything I have to pay to keep my son alive, there are times that there is not enough money for everything, bills get behind and I get stuck in a vicious cycle.”

 “Our son has Medicaid, which we fight with for the amount of insulin he needs.  Our daughter doesn't have insurance and we have to pay out of pocket for 3 vials a month.  It is seriously difficult and I’ve had to choose between bills and insulin on a monthly basis.  I have even been evicted in the past because my child's life is more important.”

Insurance premiums are through the roof, and high deductible plans run rampant because it's the only plan most households can afford. (And I use the term "afford" loosely.)
“We struggle to pay for insulin most of the year, simply because I have two t1d kids as well as a child that has JRA and a husband with MS. We actually get help to pay for their expensive meds, but no help to pay for any Diabetes related meds. We have a high deductible insurance plan and have to meet a $7,000 out of pocket. We met it this year when my youngest was hospitalized.”
“My company moved to a high-deductible plan.  Not as bad as some others, but we don't have an extra $500/mo to pay for insulin, and then the pump supplies, forget having glucagon - every month, until we reach our deductible.  We moved her to a state plan, but 7 months in the plan changed; they doubled the premium and insisted we change carriers.  We moved her back to the High Deductible plan and did the bare minimum to keep my 9 year old alive.  If it weren't for pay-it-forward groups, I’m not sure what we would have done.”
 “Since 2013, we have had 5 different insurance plans (3 deductibles to be met in one year).  Two of those plans were ones we purchased ourselves--roughly $900 a month for a family of four.  If we went through the marketplace it would have dumped our daughter on State Aid, and we just couldn't do that.  So we begged family to help us pay for insurance when my husband was out of work.”

 “With my new insurance, I'm paying a serious premium ($350 a paycheck - biweekly) humalog is 175 for two vials, Novolog is 40 for 2. Onetouch ultra blue are 60 for 2 boxes a month and no others after that are covered at all. Dexcom is 50 per sensor. Omnipod is not covered at all. I don't know what we are going to do...”
Others are rationing insulin and blood sugar test strips, and using expired insulin to get by:
 “I’ve had to go without insurance because I am Diabetic. When I was uninsured I had 2 trips to the ICU because of DKA because I couldn’t afford my insurance and had to ration it. I would skip meals, eat only a couple bites, or give less insulin than what was needed. I was left in crippling debt after that time I wasn’t insured, It's a daily struggle. I finally got insurance and was able to get an insulin pump. I am now on a new insurance plan and found out they will not cover any of my pump supplies.”
 “I thought I’d be ok financially. I saw my parents make it. Now they watch their 3 adult type 1 children and they worry about how we manage. One of us uses NPH and R insulin, two of us can't afford a CGM and I'm rationing strips and using my insulin way past the date I'm supposed to use it. Just to avoid another copay I don't change my lancet but twice a year and I use the same syringe for 2 weeks. I am very grateful that I can afford insulin at all but then again i'm putting it on a credit card."

"The cost of her insulin has soared to an unattainable price at this point. I would classify this as a crisis. Currently, my daughter is using EXPIRED insulin that was donated by a community member whose loved one passed away. Even after paying $12,000 annually for health insurance (between premiums, our deductible, and co-insurance), we STILL cannot afford Apidra -- 1) because our insurance provider won't cover it; 2) because they'll only cover 50% of Humalog; and 3) because none of our prescription costs count towards the deductible, so we're forced to pay for those separate while still having to pay down our deductible for other healthcare expenses."
And the tools we work so hard to get to keep someone with diabetes healthy? One day we'll get a letter from our insurance companies and POOF. They are gone:
 “My insurance has stopped covering all insulin pump and CGM supplies for my daughter.”
Also, Diabetes isn't he only disease on the planet. Families have a plethora of other issues to deal with. It's never just one thing:

“We were struggling really badly at one time to pay for insulin and pay for the medication and extra expenses we were dealing with for my husband's cancer. They wouldn't do his prostatectomy surgery to remove the cancer until we paid our portion of the bill up front (20% of an astronomical bill, of which we are still paying off), it left us in a very bad spot at that time. We literally had to choose between putting food on our table or even paying our rent, or paying for the copayment for our son’s insulin (and again, all the expenses with my hubby's situation, which of course, he was like, 'I'll put off surgery, get our son his insulin').  People should not have to live that way.”
To top it off, I got a few emails from American Citizens that feel as though they must live in other countries to afford the life-saving medication needed:
 “I am a US citizen who lives outside of the USA. I have often wished to move back to the States but a big reason that stops me from doing so is the situation with insurance and costs of medical care."
In Canada, you can walk into a pharmacy and buy, over the counter, the same fast acting insulin my boys use for $35 a vial. Here in the States the same bottle of insulin retails for almost $400 a vial. It is against the law for us to cross the boarder for insulin.

Someone has Canada's back. Who has ours? All the players in this impossible system have no oversight. They can charge what they want. Pay for what they want. PRESCRIBE us what they want? The United States system is letting the Pharmacy Benefit Managers, Pharma, and the Insurance Companies get away with all of this.

We have to work for change.

What are we leaving to our children if we don't? Public outcry is a must. This is why we have public officials...believe it or not they are supposed to represent us. They are supposed to help us elicit change.

In regards to the EpiPen; patients were outraged about a $400 price hike for their lifesaving medication. Mylan, the maker of the EpiPen, just announced they will release a generic version that will half the price of the brand version. There will also be a discount card that will pay the generic amount in full. Change happened because 100,000 people signed a petition and parents went to lawmakers asking for change. How is their situatin any different than ours? I remember when Glucagon was $100 per dose. I just received glucagon from our mail order pharmacy. They billed our insurance $500 a piece for our glucagon. What?

We cannot just watch this happen.

I'm not naive. I realize this problem has many players. But for each one to point their finger at the next isn't right as each one of those players are lining their pockets with gold because we have our backs against the wall.

What can we do?

I'm asking you.


We can start by signing petitions like this one:

Or this one:

Or urging our congressmen to elicit change like this one is requiring transparency in prescription drug pricing:

We can sign up for emails for DPAC that will send us prompts of who to write to, and what about:

We can write our elected officials and simply tell them your story. You can find a list of your officials:

Write or call the White House:

Just please: DO SOMETHING.

Also, watch this video. It's a beginning. And so important.



Rise up.

As ideas come, and others band together to incite change, I hope you will make a commitment to help work towards that change.

Because there is no small change.

Today, will you commit to help?

Maybe start now by working through one suggestion above, and then keep your ear to the ground...

Listen for the rumble.

And then join it.