Thursday, November 7, 2013

Living By The Numbers

1:30pm - Change infusion set and reservoirs

Finger stick (Blood Glucose): 151
Eat bowl of cereal.  About 75 grams of carbs
Take 80% of insulin now, 20% on a two hour wave.
7.1 Units total.
-Am I going to walk anywhere? No, just home, practicing.

3:06pm - Update Dexcom Constant Glucometer

Finger stick: 231

4:30pm - On my way to Aerial Photograph gig.  What's my sugar?

Dexcom reading: 136 and falling
No snacks
Suspend Pump
Feeling a little light/hungry.

4:50pm - In transit on the NYC subway.

Finger stick: 75 Dexcom says: 88
Get candy from subway platform market.  Eat 17g of candy.
Feeling ok for 75

5:05pm - Late for gig.

Blood sugar low (between 80-105) entire gig.  Feeling light and out of it.  
Took 24g of sugar tabs during gig.
Burning energy through entire performance.  Difficult to raise blood sugar at this time.

6:50pm - Resume Pump

Dexcom reading 135 and has been fairly reliable lately.

7:37pm - Feeling light again

Been some time since last meal.
Finger Stick: 98 Dexcom reads: 109
Eat Crispy chicken wrap and some fries.  about 90 grams of carbohydrates.
70/30 2 Hour Wave.
8.6 Units total.

1:00am - Preparing for sleep.

Finger stick: 111
Eat 16g of sugar

1:30am - Check again

Finger stick: 112
Blood sugar not rising
Eat 16g of sugar

2:00am - Check again

Finger stick: 146
Awake, not tired now.

2:40am - Ready to sleep

Finder stick: 136
Time to sleep.










Tuesday, November 5, 2013

Decisions Pt. 2

So, while I have my insurance company on the phone I have to tackle an on going problem with diabetes: maintaining my medicine and medical supplies.  

A little back story: 

When I received my last shipment of supplies I noticed that the number of boxes of test strips looked smaller than usual.  I should have immediately called the supply company and found out why there were less strips, but I didn't want to deal with the hassle that day.  So, about two and a half months later, I'm running out of strips.  I was fortunate enough to have another Type 1 friend (who happened to use the same strips as I do) be able to give me four extra boxes.  I get on the train, head to Brooklyn, and pick up the supplies.  Even though I was with a friend that day I still felt like I was doing a drug deal.  A drug deal for supplies I needed to survive.  I am so appreciative to have other Type 1 friends who understand what it's like to manage this disease and the insurance and supply companies.

On a previous phone call to the supply company, I discovered what happened to my remaining test strips.  My insurance company must give authorization to release the number of strips I use per day. Most diabetics I know generally check between 8 and 12 times a day to maintain good health.  Doctors recommend checking your blood sugar at least 4 times a day.  My insurance company requires authorization for anyone checking more than 6 times a day.  

So, back to the phone call with the insurance company:  

I ask them if they have received a call or email from my supply company regarding authorization for test strips.  I am informed they had and I should call back in about 5 days to hear the ruling.  This is frustrating because neither company called to tell me that I required authorization for the supplies I needed, which come prescribed by my doctors.  Without help from my fellow diabetics, I would have run out and would have been paying out of pocket for my needed supplies even though I have insurance.  

I call back 5 days later.  It's a lucky day.  I get authorized and my supply company is going to send me my remaining test strips.  A couple days later I receive my shipment in the mail.  It's the test strips, but it's not the amount I was told to expect.  Instead of the amount I am owed, it's my next three month supply.  It's also still not the amount I'm supposed to get.  

Time for another phone call, this time to the supply company:

I ask them what happened?  They inform me that my insurance company will only cover a certain amount of test strips beyond 6 per day and that they sent me as much as they could.  I ask the supply company rep if that's illegal?  The rep doesn't really respond.  I tell the rep that I was told by my doctors that the insurance companies have to send whatever amount of supplies that I am prescribed.  Again the rep doesn't really reply, just leaving me hanging and infuriated.  

When a patients supplies are not fully dispensed for any reason, why don't companies immediately follow up and inform their patients/customers?  Every now and then I receive a phone call regarding complications with my supplies.  But most of the time, when I encounter problems I have to call the companies and ask what happened or why I wasn't informed?  The only answer I get is that there just must have been some mistake.  Unfortunately this happens too frequently for me to believe that it's just a bunch of mistakes.  Patient care and customer service in regards to people who have medical needs is unbelievably low in my opinion.  Companies are making fortunes off of people's sickness and treating the sick like addicts.

It's a constant battle and most of it doesn't make sense.  Why do chronically ill people require authorization for their supplies? Why is an insurance company allowed to say how many supplies a person needs to live and feel comfortable in their life?  Why is an insurance company allowed to disagree with what doctors prescribe?  Chronically ill people need these supplies to feel like they can maintain a sense of normal life.  It shouldn't be harder to get the supplies to manage the disease than it is to manage the disease itself.

As a musician and for travelers, this raises a big question.  If I am performing outside of the country for an extended period of time and in this time I am due for another shipment of supplies, how am I going to receive my needed supplies?  Are they going to mail my supplies to wherever I am in the world? The mail in the US is tricky enough, but would I trust my life saving medical supplies to mail systems in countries I am not fully familiar with?  What happens if the companies don't send me the correct amount or incorrect supplies?  How am I supposed to effectively get in contact with them from outside of the US and fix the problem?  They don't send supplies before your due date so you couldn't stock up before you leave.  There are many professional touring musicians with Type 1 diabetes who I will have to get in contact with and learn from their experiences.  I look forward to taking my music and other's music to new places in the world.  

Friday, November 1, 2013

Decisions

Man, I want to play my horn today.  I just got back to town from visiting family and I haven't played in about 5 days.  I saw some cool old horns and met some nice people in music stores in Eugene, OR.. Now that I'm back though, it means checking the mail.  I don't like checking the mail that often.  Many times there are bills from doctors and insurance companies that need my attention.  So I check the mail because I've been away and sure enough, there's a bill.  Now I only have a few hours before I have to be at work (because I was up late waiting for my blood sugar to return to acceptable levels) and I really want to play my horn and work on music before I have to be into the job. Anything could be in this envelope though.  Upon opening I quickly realize this letter needs my attention.  Decision time.  Deal with the letter and hope it doesn't take up my entire afternoon before work or practice and work on music.  I choose deal with the letter.

It's a bill.  Apparently I owe $765 for some tests done in September.  I have insurance, why do I owe so much money?  Is it because my insurance is a high deductible health plan and these tests aren't part of my normal plan?  I can't afford to pay this bill right now.  I'd like to think I'm trying to save money for putting out my music projects.  Dammit I have to call my insurance company.  Every company I call has an automated operator system upon connecting.  Navigating these systems can be simple to extremely frustrating and useless.  Most fall more towards extremely frustrating.  Don't even try to call the state Medicaid office, you will never reach an actual person.  So I get through the system and reach a customer service representative.  I tell them I received a bill and the reason I am being charged is that I was not insured at the time of service.  This is false.  My insurance company confirms I did have insurance at the time of service and in their records there is no claim of services from the doctors.  My customer service rep tells me they are going to follow up with the doctors and to not worry about the bill for now.  I will receive a letter in 45-60 days telling me the outcome of the bill.  Also, if I receive another bill from the doctors within the 45-60 days call back immediately to the insurance company.  So, problem solved for now.  If I'm lucky the insurance company will actually handle the situation and I won't have to make anymore phone calls.  If I'm unlucky, 45-60 days from now I will receive a letter telling me I owe money for medical services I thought my insurance would cover.  

I believe that when you go to the doctor there should be some system in place for letting patients (I generally feel more like a customer when talking to insurance companies) know what bills they will incur for the services they require before the services are given.  I can see how this would create problems for people who don't want to pay for their health.  But at the same time if there are cheaper ways of getting the same services it should be the patient's choice to take other options.  Also, directly connecting insurance companies, doctors, and patients at the time of service for the services required could eliminate this whole problem.

Problem number one solved.  But while I have the insurance rep on the phone there’s another problem regarding medical supplies to be sorted.  To be continued in post Decisions Part 2.  

So today it seems I will get to practice and work on music.  It took about an hour to sort out today’s diabetes related issues, which is not that bad.  It also wasn’t an infuriating experience.  I would have much rather done other things with my time than sort out doctor’s office and insurance companies constant ineptitudes, like relax and check out music.


Photos from Uptown PartyDown show at Casa del Sol in Nyack, NY.



Thursday, October 31, 2013

First Post - Late Nights

It's another late night.  I'm up waiting for my blood sugar to return to a healthy range before I go to sleep (sometimes this takes hours, like tonight).  So, I think I'll attempt my first post.

My name is Paul Jones.  I'm a professional saxophonist living in New York City.  And I love what I do.  I am also a Type 1 Diabetic.  I was diagnosed with Type 1 just before moving to New York to attend grad school about four years ago.  It's been a crazy few years.  I've learned so much about music, people, health, nutrition, business, and myself.  I decided to start this blog because so often I find myself answering questions or being in conversations about diabetes.  Most people (like myself before I was diagnosed) have a very limited understanding of what it means to be Diabetic (and honestly I don't know much about any other major diseases currently).  I wanted a way for friends, family, and new people to get an inside look into what it means for me to be diabetic.  I want to start a relaxed open conversation about Diabetes.

The way I see things today (side-note: Diabetes is always changing as your body is always changing, so I will probably amend the way I see things a week from today) there are three major areas of focus for Type 1 Diabetics.

1.  Learning about Diabetes and how to manage it.
2.  Managing Diabetes and the mental aspects of living with a chronic illness.
3.  Dealing with Health Insurance and Medical Supply Companies.

(#3 in my opinion is the most difficult.  Remember, this is my view.  Other diabetics may completely disagree with me)

I guess one of the first things I wanted to talk about has to do with #1: Learning about Diabetes.  One of the first things people usually say to me when I tell them I'm diabetic is, "Well, you don't look over weight or unhealthy?"  Then I explain about the two different types of Diabetes.  Type 1 is an autoimmune disease that destroys all the insulin producing cells in your pancreas and Type 2 is a metabolic disorder brought on by genetics and life style with a result of insulin resistance.  The cause and treatment for each type is vastly different.  Type 1 diabetics must take insulin to survive.  Type 2 diabetics through diet, exercise, and non-insulin medications can reduce their resistance to insulin.  But, if a person with Type 2 diabetes is unable to get their health in control, they too will eventually have to take insulin.

It's 6:30am and my sugar levels are looking good.  Time to wrap this up.  Hopefully through writing about my experience I can offer a deeper view to friends/family and new friends/family into what it means to be diabetic.

Current listening: Mayer Hawthorne - Where Does This Door Go
                             Ray! - The Soundtrack