Wednesday, May 17, 2017

Access isn't Equal

"It's Day 2 of Diabetes Blog Week, with 105 bloggers officially signed up.  Today we're discussing The Cost of a Chronic Illness.

Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?"

I didn't get to write this yesterday because SugarBear is sick.  Fever, sore throat, roller coaster numbers, ketones, vomiting, feeling just awful.  Today I have a moment, not because SugarBear is better he isn't, but because I'm staying home from work to care for him.

Insulin for pumps 
Insets for t-slim pump for Drago
Cartridge and tubing for t-slim pump for Drago
Pods for Omnipod pump for SugarBear
verio strips for Drago
freestyle strips for SugarBear
verio lancets for Drago
freestyle lancets for SugarBear
Alcohol swabs
Unisolve remover 
Numbing cream
Sensors for Dexcom for both
Transmitters for Dexcom for both
glucose tabs for both
glucagon for both
backup lantus insulin for both
backup pen needles and syringes for both
both cartridges and vials of novolog insulin
grif grips
skin tac
vet wrap
juice boxes
medical ids
food scale
ketone meters
ketone test strips
glucose gel
kit bags

Supplies, supplies, supplies.  Diabetes is expensive, even with excellant insurance.  But we are thankful we have it.  But the US falls somewhere in the middle when it comes to access to all of this.  Some countries, like England, insulin is "free".  And access to insulin in third world countries can be awful.  

Some care choices in the US for those that have access issues can be devastating.  Everything from "stretching" insulin to not changing your insets regularly can have major consequences, not limited to whether one lives or not.   At the moment we are lucky but we still have to fight for more insulin, Dexcom supplies, or even enough test strips.  I wish insurance didn't dictate care. 

The pic above shows just a few of the supplies we are lucky to get.  In some places people don't have even this, making it almost impossible to really care for someone with T1.  I can't imagine complications happening so early because access isn't there.  I just recently listened to a Juicebox podcast Love and Charity in London by Scott Benner where he interviews Elizabeth who started T1 International.  It is fantastic.  And it brings to point that access isn't equal, and it should be. 

Monday, May 15, 2017

When you get more than you expected

Diabetes Blog Week Monday prompt:

"Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one's, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)"

Hmmm, there are no rulebooks for life.  And very little with diabetes makes sense.  Although when my oldest was told this past november that he has gastropareisis he did say "Well, that makes sense.  No wonder I can't prebolus and when I do I go low."  Anyway, there are always good things even in the worst.

When SugarBear was diagnosed with Type 1 I couldn't imagine the good things and then when Drago was diagnosed I realized that even in this most awful space where both of my only biological children have this disease I could find the unexpected.  Drago was diagnosed 3-3-15 and in a very short while we were seeing benefits to having a second child diagnosed.  Drago is older (by four years) than SugarBear and up until SugarBear was diagnosed with Type 1, Drago had always been the one leading the way.  For a little over a year, SugarBear had something that set him apart, made him different.  Then it was Drago's turn.  In many ways it hurt more because we knew but it was also easier because we knew.  But what was an unexpected surprise was the benefits for SugarBear.  Drago got a Dexcom within a short period of time and all of a sudden SugarBear thought that would be okay.  When Drago got his pump, SugarBear was intrigued and now he too is pumping.  They encourage each other.  They know.  Another benefit before pumping if one boy forgot his insulin pen there was always backup (even at a full day at the amusement park after a JDRF walk).  Extra supplies another sort of benefit.  When we run low on insulin  (maybe because of insurance snafus which I would say are unexpected but never are) for one we still have insulin because we have a second person in the house with Type 1.

But how has diabetes brought unexpected good into my life?  I'd say the biggest blessing has been the people we have met on this journey through JDRF as well as just connecting because "we know".  I've met people with Type 1 in my community and online, at JDRF summits and because we connect on something that many just can't comprehend.  I've gotten even better at computations and have grown fond of numbers.  I've gotten a new appreciation for life and a perspective that allows me to keep going.  Type 1 colors everything in every color.  I've grown because of what our family is going through.  I've found the unexpected because the unexpected found me.