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Getting the run around from the medical supply companies, doctor's offices, and insurances companies big time today. My current medical supply and insurance company partnership only allows me to receive one month of supplies at a time (it's not like I'm ever not going to need these supplies, why do the chronically ill have to be limited to such a low amount? What if someone went out of town for more than a month?). This requires me once a month to call into the supply company and ask for a refill on my life saving medical supplies. I call early every month as to deal with whatever problems arise. This month, there was no shortage of problems and completely incompetent customer service staff.

So I've had it, I'm through with the medical supply company I'm using and I want a new one. I call my insurance company and ask if there is a medical supply company that they use which allows me to get three months worth of supplies. The customer service agent doesn't really understand and gives me the numbers to supply manufactures, not supply companies. So, I hang up and call back hoping to get a more intelligent individual. I do and she gives me the names of the companies they work with. Apira, Byram, Edgepark, Genadyne, and Epic. I decide to look up some reviews of these companies to find which one may be the best to work with. Some of what I found is fairly heart breaking and unfortunately seemingly common place among medical supply companies. The third review in my post here is particularly difficult, read with caution.

Apira: 1.5 Stars out of 5 on Yelp

Cris I: 

This company is HORRIBLE in every possible category.  Their "customer service" folks operate at snail speed, and are borderline incompetent.  Their billing practices are less than above-board.  Their product selection is laughable.  And their prices are several times greater than you can get the identical products online.  If it were possible to give this company negative stars, I would.  This program forces you to give at least one star in order to post a review - which is a shame, because this company deserves none.  My opinion is reflected in the vast majority of customer posts on this cite.  Do yourself a BIG favor, and stay away from this place.  Go elsewhere.

EdgePark: 1.8 Stars out of 5 on Google Reviews

Melissa Dale:

As a T1 diabetic, I am so outraged at the unprofessional approach taken by this company. Unlike breast pumps or the like, I need to go through Edgepark (repeatedly) in order to LIVE. I literally have no other choice, and let me tell you, I would infinitely rather call some 3rd rate tech support center. When I call, the people I talk to could clearly care less. Their only goal seems to be to pass you onto somebody else. Phone calls last up to hours, and it takes WEEKS to get everything straightened out in order to get an order. I have been passed around in circles between several departments, each one saying there was nothing in their department holding up the order... must be the next department. I have yet to have an experience that doesn't end in tears. Several areas on their website do not work (unprofessional to say the least). I wish I could find the appropriate words to truly express how ridiculous this company is, and that I'm not overreacting in the least. It already sucks dealing with this disease, but I would say that Edgepark sucks every bit as much.

Byram: 1 Star out of 5 on Yelp (This is a particularly difficult story to read, you may want to skip this review)

Cliff H:

I am a colostomy patient who depends on Byram for ordering my colostomy bags and supplies every month.

When I placed my last order there was some kind of problem with their online ordering system.  On Friday, when I still had not received confirmation of my order, I called to speak to a live person to tell them I would be out of bags by Saturday if I didn't get my order.  To be clear, when you have a colostomy, you CANNOT run out of bags.  You can't go to any local store to buy them as they are an "order only" item.  

The Byram person told me they had obtained approval for a Saturday delivery and that I shouldn't worry, my order would arrive the following afternoon.  At around Saturday at 4pm I called the Byram 800 number as my order had not yet arrived.  The operator told me that they looked up my order and it was coded wrong so it wouldn't arrive until Monday.

That's when the real Hell for me started.  I had to spend the next 48 hours naked from the waist down with a bucket under my stomach to catch what should have been going into the bags.  Due to Byram's mistake, I had to spend what were the most dehumanizing and humiliating hours of my life thus far (and please God, don't let there be any hours in my future that are as bad or worse than these were).

I am going through treatment for colon cancer.  I have lots of issues to deal with.  I also am not able to work right now so every day is a fight for me - financially, physically, etc.  To have to go through that kind of humiliation when I'm already this far down was beyond anything that I could imagine.

If you are able to go through another medical supply company - DO IT.  Don't use these people.  Whatever your medical problem is, if they didn't care enough to make sure I had just the basics that I need (the colostomy bags) so that I didn't have to suffer with a bucket under my stomach to catch the poop for two days, they sure as heck won't likely care about what's going on with you.

Better Living Now: My current supply company: 2.5 out 5 Stars on Yelp

So the way things look now, my current company seems to be not that bad compared to what is out there, which seems to be terrible and de-humanizing. But 2.5 out of 5 stars isn't exactly thrilling for me. There are plenty of reviews talking about how bad Better Living Now's customer service is on their Yelp page. It seems that poor to terrible customer care is a major theme when dealing with supply companies. I think for now, I may be stuck where I am when it comes to receiving my supplies. It's just so unfortunate that bureaucracy and incompetence makes people's lives with chronic illness doubly difficult.

Been enjoying Bill Stewart's playing and composition Mynah:

https://www.youtube.com/watch?v=jn46DDvyVc8

Ben van Gelder's Reprise:

https://www.youtube.com/watch?v=h8SCy_-5wcU

Relief

I feel markedly better tonight.

I came home after work and my supplies have actually arrived. The supply company actually sent me tracking information this time. Somehow my doctor and supply company actually co-ordinated to get a new prescription. I actually received all my supplies!! I only had to call the supply company twice and the doctor once. This is a huge win, this month.

I wasn't fully aware though of how much stress I was carrying around with me this week while waiting for my supplies. I felt generally alright since my first call to the supply company but many times in the days since I would remind myself, "Call the supply company. Make sure they received the new prescription from the doctor. Tell them to just send whatever they have prescriptions for currently and not wait to send all my supplies at once, when they have the new prescriptions. Don't forget to make a payment for previous supplies. If the person on the phone sounds incompetent, immediately ask to be transferred. If you don't get what you need, ask for the supervisor right away."

This state of being is common with diabetes. So often I find myself stressed in some part of my mind with whether my supplies are going to come, am I going to run out of supplies, have I taken to little or too much insulin, will this visit to the doctor cost me an arm and a leg, can I actually walk to where I am going today, do I have my sugar and meter?

As a diabetic I have to make so many decisions throughout my day just to get anywhere. It's becoming second nature, after five years, but the stress involved with managing a chronic illness is massive. I work to take steps to lower my stress levels but as this disease never takes a break, I find that I can feel fine and normal one minute and then low and ultra discouraged the next.

Along with all the stresses of managing my health and supplies, there is also the issue of how my blood sugar level actually effects my mental state all together. When my blood sugar is very low, it's difficult for me to hold conversations and put together coherent ideas. I need to just sit down and fully recover. When my blood sugar is high for an hour or so, I don't feel bad. But when it's high for a consistent period of time, I become easily agitated and frustrated with just about anyone and anything. Doesn't make for a happy Jones.

Chronic illness is definitely a mental game. I'm getting better at playing it, but it seems there will always be new players and rules along the journey.

Got a lot of fun gigs this month, playing a lot of great music. I really can't wait. And now that I have my supplies for the next period of time hopefully I can really let go and just enjoy music with my friends.

Here's the Ben Wendel Quartet performing Jean And Renata. Featuring Gerald Clayton, Joe Sanders, and Henry Cole. I really want to see this group the next time they are in Nyc.

Is that a pager?

"Is that a pager?"

-No, it's my insulin pump. 

"Oh, whoa. I'm sorry. I, uh, didn't...know"

-No worries, not a big deal. All though this clear tube running from the pump into my body does allow me to receive texts from 1993 directly to my brain.  

"What?"

-Sorry, it's just an insulin pump.

Today's technology has really advanced how diabetics manage their health. From the insulin pump with wireless receiver and meter, that doesn't require coding (I have no idea what coding means on a meter btw) to synthetic insulin which doesn't require refrigeration. Insulin pens instead of syringes and vials. National food labeling standards. Dietary dictionaries. Websites and blogs on the best ways to manage diabetes from diabetic's personal experiences. If I have to be diabetic, this isn't such a bad time. Hopefully soon technology will help me to not be a diabetic at all.  

It's amazing though, this technology is right under everyone's nose and most people don't notice it, or use it. It's also amazing that when they do notice it, they think of a pager, which no one outside of a hospital has used it in at least fifteen years, at least in NYC. I've visited many doctors in New York and most of them haven't seen the pump since med school. When I'm wearing my Dexcom continuous glucose monitoring system, I end up giving most doctors a lesson in diabetes technology today.  

It seems the general population of diabetics in my neighborhood are still using insulin pens with fast acting insulin like Novolog or Humalog and long acting insulins like Lantus. When someone is first diagnosed they have to learn to use syringes and vials for a period of six months before they are allowed to use the insulin pump. Personally, this made very little sense to me. First off, I don't want to carry around syringes, vials, or pens with me everywhere I go. Second, I don't really enjoying giving myself shots multiple times a day. Third, I want to use the most up to date methods for managing my condition. As soon as my six months were up, I was on the pump. It fits in my pocket and I can take my insulin with me where ever I go. Also, I don't have to take all of my insulin at once,which is a little scary at times. The pump allows for your total amount of insulin to be spread out over a period of hours allowing for better control. But I will say, whatever method works for someone to stay in a healthy range, I'm all for it. Diabetes is different for everyone. 

Flying can be difficult with a pump. The pump won't set off a metal detector, which is nice. But if you fly through an airport with a full body scanner and you don't take your pump off, you definitely will get pulled aside and scanned for explosive materials. It is annoying. If your doctor hasn't seen a pump since med school then the FAA has no clue what one is. 

So thanks technology, scientists, doctors, and inventors for continuously pushing forward with new ideas and devices to make everyone's lives better no matter their condition. Google currently has a new contact lense in the works that will also function as a constant glucometer. View thew ABC news article here: http://abcnews.go.com/Health/google-contact-lens-monitor-diabetes-holds-promise/story?id=21577373.  I look forward to all the questions I'll get from this new device that will only further me looking like a cyborg.  

Check out Tim Lefebvre destroying the bass: 

Another Late Night

Up late again. Hopefully my sugar levels will return to an acceptable level for sleeping soon. Gonna be tired tomorrow, again.  After scouring the internet for all the possible videos of Keilwerth Saxophones, (I'm really interested in their sound right now) I decide to see if there is any news on the diabetes front. I find an interesting article from the New York Times that really captures what people with Type 1 Diabetes and chronic illnesses face in regards to health management, insurance companies, and pharmaceutical companies.

http://www.nytimes.com/2014/04/06/health/even-small-medical-advances-can-mean-big-jumps-in-bills.html?_r=0

Some quotes that really struck me:

- Dr. Spencer Owades, a dentist in suburban Denver with Type 1 diabetes, said he was shocked to discover that his test strips — which cost just pennies to make — were priced at $1.50 apiece when he ran out and had to buy them at a pharmacy. He usually received them in the mail through his insurer and uses five to 10 a day.

“It’s a printer model,” he said, “where the printer is cheap, but they get you on the cartridges.” He added: “But if you have diabetes, they have you over a barrel.”

- Mr. Kliff, the financial analyst, said some companies were no longer willing to sell in Germany as ever-tougher price negotiations have eaten into their margins. “I’m not saying they can’t make money there — they can,” he said. “But they can’t make the kind of money they make in the U.S.” He added that diabetes treatments remained highly profitable in the United States; insulin, for example, yields profit margins of around 70 percent.

I feel fortunate to have insurance at this time and for the American Care Act. But with the current state of the economics behind chronic illness, without either there would be no way I could continue following my dreams, much less any dream except paying for health supplies. I don't even want to imagine how much all of this will cost five to ten years from now without insurance.  

Also, f.y.i. most insurance companies don't cover AAA batteries or the inserter of the Insulin Pump Infusion Set. Without the inserter you can't receive insulin into your body and without the batteries the pump doesn't run at all.  

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.

Post by Matt Davis' Aerial Photograph.

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.  

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.