I Don’t Expect You To Know…

1436093_55811447My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)

I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.

I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.

Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)

Now re-read those first two paragraphs.

I Don’t Expect You To Know…

I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.

All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?

“What do you mean the ER nurse didn’t know what a CGM is?”

“The optometrist asked you what your blood sugar was this morning?”

“The doctor wanted to take your insulin pump off in the hospital?”

“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”

“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”

We are the experts…

We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?

This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)

269548_4087We have a choice…

When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them. 

“The ER nurse didn’t know what a CGM is?”

Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.

“The optometrist asked you what your blood sugar was this morning?”

Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)

“The doctor wanted to take off your insulin pump in the hospital?”

If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology – and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation – a two-way conversation – and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.

(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)

When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.

Teach…

We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.

We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?

Sounds crazy, right?

Let’s be crazy.

 

 

 

As A Jaybird

1051853_45298648Naked.

Completely naked.

As a jaybird. (That’s a saying that I heard as a kid, and here’s the saying’s origin.)

It’s rare that I get to be completely naked. You know what I mean. No insertion set. No CGM sensor. Nothing extra to hold or unconsciously shield against doorway scrapes or zippers.

I change my insertion sets every three days and my CGM sensor every ::mumble mumble:: (as long as I can get it to last, but you know, officially it’s seven days…), so it’s not often that both attached to my body items are missing.

I had snuggled under the covers, having done my last BG check of the day and put my Dexcom receiver next to my head. As I slid my arm under my pillow, I felt the tape give way.

“&$#(*^*!”

It was a beautiful run with this sensor (not just for the beautiful graphs for the past weeks, but accurate from start to untimely demise). Nighttime lows are becoming less frequent (and less severe) for me, although I tend to skim the bottom line of my low alert if I’m not careful. Having the Dexcom off my body at night is foreign these days, but I was cozy and comfy and sleepy. The Kid woke me up at 3am. She acted as my backup CGM (she just didn’t know it) and I sucked a juice box down and woke up at 74.

Raise your hand if you feel strange too when you rip that insertion set off your body before a shower!

There’s a moment of “I have nothing foreign on or in my body.”

There’s a moment of “It’s just me.”

There’s a moment of “This is what it used to feel like all the time.”

Then there’s a moment of “I’m glad I have the tech that I do have.”

The stars align sometimes and I feel free from the physical burden of diabetes technology that keeps me safe and healthy and alive.

I also feel naked without them.

As a jaybird.

Why Clinical Trials Matter To People With Diabetes

819412_43058630Clinical trials means better drugs and devices.

Better drugs and devices mean better treatments.

Better treatments mean longer, healthier lives.

Longer, healthier lives means more time with the people you love.

Clinical trials = love.

Clinicaltrials.gov is the first place to look to see if there is a clinical trial you can participate in that happens to be in your area.

Want a little nudge?

Click on this link for all open clinical trials in the United States with “diabetes” as the keyword.

Click on this link for all open clinical trials in the United States with “Type 1 diabetes” as the keyword. (There are currently 428 studies available.)

You can modify your search and pick your state (heck, if you are out of the U.S., there are still studies you can do). Some areas have more opportunities than others, but this is your chance to get involved and help all people with diabetes. I’ve done clinical trials and am always on the lookout to do more. Why?

Clinical trials = love.

Our very good friends have a child with cancer. This child was being treated with high-dose chemotherapy and developed a life-threatening liver issue. The only treatment that gave them an option was through a clinical trial. That clinical trial saved his life. In participating in the trial, his results will help pave the way for better treatment options for others. He didn’t have a choice (thankfully the clinical trial was available), but we have a choice right now to help others.

Clinicaltrials.gov is a crappy website. Yep. There. I said it. It’s not user-friendly, but it does provide you with all of the information you need. And you can look at it anytime because they’re constantly updating it. For ALL disease states, not just diabetes.

Want to Participate?

Once you’ve found a study that you might want to participate in, you’ll need to check the “inclusion criteria,” which will tell you whether you not you’re a candidate. Some are specifically by age range, some may exclude those who have had illnesses, and others must have individuals in a certain weight range or HbA1C range. If you meet the criteria, you can contact the study coordinator and get more information.

Some trials will provide not only the medication or device during the trial, but medical team appointments and travel/monetary compensation. You can be altruistic AND help yourself at the same time!

If you see your medical team at a research center, ask them if there are any clinical studies that you can participate in. (You never know!)

Also, if you happen to be in the Chicago area and meet the criteria, here’s something that you can do to help…

Research Study for Young Adults with Type 1 Diabetes at University of Illinois Chicago

If you are 18 to 30 years old with Type 1 Diabetes, using an insulin pump, not working Evening, Night or Rotating Shifts and willing to participate in a research study then you may be able to help!

Research activities will include: 1 hour visit for health history and physical, wearing monitors to measure activity & glucose and an overnight sleep study.

Research Related activities will occur at: UIC College of Nursing (845 South Damen StreetChicago, IL 60612) and UIC Sleep Science Center (2242 West Harrison Street, Suite 104, Chicago, IL 60612)

Participants will be compensated for time and travel.

If interested please contact the Principal Investigator, Sarah Farabi (email: sschwa24@uic.edu or phone: 312-413-0317)

 

 

What My Father Said…

IMG_4171My father says a lot of things. Most of the things he says, despite his assertion of the contrary, I actually do hear. And right now, I’m living in the middle of one of his comments to me…

“If you want something to get done, give it to the person who has the most to do.”

It’s true, isn’t it?

We are less than 60 days out from The Diabetes UnConference. I’m checking off items left and right as the days whiz by. Las Vegas gets to meet the brave participants who will share their thoughts and feelings about diabetes face-to-face and I’m giddy with anticipation. And apparently, no sense of time.

I booked my flight to Las Vegas earlier this week. This morning, as I was going through my online calendar, I was puzzled at seeing a flight confirmation for February. To Las Vegas. What?

So eager was I for The Diabetes UnConference that I booked my flight a month earlier than intended. Thanks to Southwest’s no change fee policy, the only loss I incurred was one of pride.

(If you haven’t registered for The UnConference yet, please do so ASAP. Flight prices have dropped and the room block rate deadline in February 10th!)

Between the logistical planning, the writing, the management for some really interesting projects I have on the horizon, and being a mom and a wife… I still have diabetes. I’ve made some changes to my management plan and I’m enjoying, for the first time in… forever?… stable blood sugars.

My time in range has never been this good and it has made such a difference in my ability to get things done. I knew that having the roller coaster days weren’t the optimum way to live, but I really had no idea what being in range more often would feel like. For the first time ever, I’m actually excited to have my A1C tested. It makes my life easier, because right now, I’m the person with the most to do.

And the most to gain.

For the next few weeks, I’ll be blogging just a little less frequently. Founding The Diabetes Collective and launching The Diabetes UnConference is an amazing process, but it is time consuming!

 

 

 

We’re Not Gonna Take It

I am sorry for this image that I have put in your head, along with the song that accompanies it.

I am sorry for this image that I have put in your head, along with the song that accompanies it.

My tolerance for ineptitude is miniscule. I wouldn’t consider it a character flaw. (It’s inherited. Genetic. My father has the same tolerance level.) I’m all for giving people breaks if they are new to a position or might be having a bad day, but if the inability to fix a problem for a client is written (in invisible ink) into a company’s mission, there’s a serious issue.

Insurance companies have a lot of serious issues. I paint insurance companies with a broad brush because while there is always an exception to the rule, I have yet to turn to someone after getting off the phone and say:

“Wow. They’re the best insurance company ever. I’ll be a loyal customer until I die!”

Because they don’t want you to be a loyal customer. They want you to leave when you start to have complications or get serious illnesses. They all hope you’ll be another company’s problem by the time that happens.

You’re technically not even a customer; you’re a subscriber. (Unlike a newsletter or a magazine subscription, you’re not subscribing voluntarily.) You’ve “chosen”” ::cough cough:: a particular insurance company, but really it’s your employer in most cases that does it for you.

Side note: Most employers don’t care about the fantastic experience you’d get from the insurance call center or if you have to jump through rings of fire for durable medical equipment. They want to check a box for the government under ACA (although some companies are happily paying the fine) or add “we offer a medical plan” to potential job prospects. (I think all job descriptions should include a URL to the medical plan they offer, but that’s just me being efficient.)

Insurance companies are not altruistic. They are not charities. They are not there to help you. They are businesses. Businesses that have profit margins and bottom lines and investors. For years, they did everything possible to avoid having chronically ill individuals on their plans. These days, they can’t avoid us. We’re here.

But they are not making it easy for anyone these days to get answers. Or help. They think we’re just going to eventually give up.

My latest foray into the seventh circle of hell (which is reserved for insurance companies) had nothing to do with diabetes (except that it was fun to watch the Dexcom graph rise while I was on hold and seething…), but it did prove to me that sometimes, you have to say that you’re just not going to take it.

The Never Ending Story

I had COBRA for two months while John switched to a new position, waiting for his company’s healthcare plan to kick in. I had a Continuation of Coverage certificate, showing the dates of COBRA coverage. COBRA was through the same company as the healthcare insurance company, just a different department. And that’s there the problem started.

COBRA had put in the wrong date (off by one day) for the end of my coverage. Of course, I had two doctor appointments and lab work on that last day, so the bills came in from the providers. I called the insurance company.

Them: “You had no coverage on that date of service.”

Me: “I have a Continuation of Coverage certificate from your company showing that I did. I’m happy to fax it over to you.”

Them: “We can’t receive faxes. You need to contact COBRA and have them change the date. Then you can call us back and have the three claims reprocessed.”

I called the COBRA department. It was a “data error” and they would update my file to show the correct date.

Them: “It should take just a few business days for the correct data to be updated throughout the system.”

It took five months and over 11 hours on hold/discussing/explaining over and over/cajoling/pleading with both the COBRA department and the insurance company (They are the same company. I can’t stress this enough.) and the date finally got straightened out.

I was told it was fixed by COBRA and that it was the insurance company’s fault for not updating. That excuse was used twice, but then a third person admitted that they hadn’t submit the data change after three weeks and two phone calls. I was told that there was no single point of contact for either company to handle the escalated (by now) issue. I was told that they couldn’t make any outgoing calls and that I couldn’t get a phone number to call anyone. An email? ::insert evil laugh:: Silly woman.

I thought it was fixed. I was told it was fixed.  After five months, it was over. Hot damn and hallelujah.

Nope.

I received a dunning letter from a provider, threatening collection and damage to my credit. Originally, the claim was paid. The insurance company’s “claims recovery” department has asked for the payment back and was not releasing the request, despite the correction of the date. Could I talk with anyone there in the claims recovery department? No. Could I send documentation showing the coverage date? No.

Could I pay the bill to the provider? Yes.

I thought about it. Thought about how I was exhausted, fighting against a company I paid a lot of money to receive benefits that weren’t being given. I was tired of the tinny on-hold music that became the soundtrack of my days. And then I decided I wasn’t going to take it. At this point, I had clocked over 13 hours on this mistake that was not my fault.

Filing A Formal Complaint With The State

I filed a formal complaint against the insurance company with my state. Uploaded my documentation and did it online. I used the word “ineptitude”.

On December 23, almost eight months after the date of service, I got a phone call from a “member advocate” of the insurance company. He was “calling to help me resolve the issue”. He admitted that he was calling because I had filed the complaint with the state. Can you imagine what would have happened if I hadn’t formally complained to the state?

Those of us with diabetes understand that we have to work with constricted formularies, certain types of pumps and meters, get letters of medical necessity and write appeals.

We can choose to wait on hold while Mozart Muzak drones off-key or we can say that we’re not going to take it anymore.

Document. Document. Document.

Document. Document. Document.

If You’re Having a Problem With Your Health Insurance Company

If you’re having an issue with your insurance company not paying claims for services, not providing documentation for denials or appeals, here are my recommendations:

  • Document everything. Hint: Get a notebook just for insurance calls.
  • When the representative comes on the line, ask for their name and identifying ID. Write it down along with the time and date of the call (and even the length of time the call took, if it tickles your fancy).
  • Be respectful towards the representative, who isn’t the individual deciding on your claim status or your appeal or denial.
  • Have your claims documentation at the ready, because they’ll always ask for information.
  • If you’ve got an issue that’s been going on for a while,  allow the representative to take a moment or two to re-read the notes. This will save your breath. 
  • Ask for an escalation if you’re not getting anywhere. There are “escalated claims specialists” that will magically appear on the line who can give you (at the end of the call) a different number to reference as part of the escalation. 
  • Give them time to work the issue, but hold them to the timetable. Some issues are complex, but others should be resolved quickly. 
  • Know that each state has an Insurance Commissioner (and department) who is tasked with protecting consumers. Use them if you’re not getting a resolution after 30 days or if you are not satisfied with the appeal decision. Here’s a list of all the state Insurance Commissioners for reference. 
  • If you have an issue with a provider being paid properly, work with the provider. (They all have resources and recourse against the insurance company, so two heads are better than one.)

As of today, my issue still isn’t resolved. Why? (For those of you playing at home: these people all work for the same company. Just different departments.) The member advocate gave me this excuse:

“I can’t get in touch with anyone in the claims recovery department. I’ve called a few times. I’m trying to make sure they have all the documentation they need so they can stop the request for the refund.”

It’s his turn to sit on hold for a while. I’m not going to take it anymore.