Feeling low

I buried my head in my pillow, the soft fabric muffling my frustrated screams. I hate it. I hate it, I hate it, I hate it.

I was low. AGAIN. It seems to be the trend lately. My efforts to keep my blood sugars from spiking has resulted in more lows. Lows that seem unexpected because I really thought everything I was doing seemed right. Lows that have been incredibly disruptive, making me stop whatever activity I’m doing. Stubborn lows, that a couple glucose tablets don’t seem to solve. Lows that wake me up at night, lows that won’t go away, lows that leave me feeling awful. And upset. And frustrated.

I don’t want to treat the low. I’m tired of stuffing my face with sugar, not because I want it, but because I need it. I’m tired of working so hard in my workouts, only to have to later eat everything I burned off or sit out because I can’t continue with a low. I’m especially tired of eating when I’m not hungry and feeling awful while I wait for my blood sugar to stabilize.

I can see the extra weight creeping on, and I hate it. I hate that I don’t have a choice when I’m low. I hate that those forced extra 80 calories of my fruit snacks add up. I hate that insulin makes it harder to lose weight. I hate that these lows are often then leading to later highs, sending me on a blood sugar roller coaster. I hate not feeling my best.

I’ll talk to my doctor, I’ll make adjustments. We’ll work to get rid of these lows. But for now I just want to scream into my pillow and wish for the day when all of this will disappear. When sugar will just be sugar and not a substance that often feels like its controlling my life.

Some days, weeks, months are better than others. I’ll make it through this rut, I know I will, but today, right now, I really hate my diabetes.

The Big Bang Theory Bust

I love the show, The Big Bang Theory- it’s one of my favorite. In fact, last year I even dressed as Amy Farrah Fowler for Halloween. But, for the first time ever I cringed while watching a recent episode. Penny was sitting in an interview to be a pharmaceutical rep. While talking about her previous job experience as a server at the Cheesecake Factory, she says that she once convinced a group of bigger customers to order cheesecake, ones that even had an insulin pump. Then the interviewer says to her, “I have an insulin pump.”

In my experience, it’s very rare that a television show accurately depicts diabetes, Type 1 or Type 2. Maybe the statement was just a way to communicate that the customers had diabetes. But to me, Penny’s statement seemed to imply that if you have an insulin pump, your diabetes must be really bad. But that’s not the only assumption that one could make from that statement. Someone could assume that having an insulin pump means that you must not be doing a good job taking care of yourself, that you’re to blame for your present state, that an insulin pump is something you get when all else has failed.

I was watching the show with someone who knows that I have an insulin pump, but not a ton more. We haven’t had a lot of discussions about my diabetes yet and what it means to live with Type 1. We haven’t talked about my pump and what it does and what my life was like before I had it. Rather than taking the opportunity to educate, I instead cringed on the inside, hoping that my friend was not silently making assumptions about me and my diabetes based on that statement. In that moment, I hated that show for making me feel self-conscious or ashamed even for those few seconds.

Because I’m not ashamed. Having an insulin pump is nothing to be ashamed about. I love my pump. It has given me tremendous freedom, control, and flexibility that I didn’t have before.

My insulin pump is the tool that helps me keep my blood sugar under tighter control. I didn’t go on it because my control was poor, I went on it so that I could have even better control. My pump is what helps me take care of myself and be healthy, not a symbol of the opposite.

Maybe not everyone interpreted Penny’s statement the way I did, Maybe I was extra sensitive to it. But, in my opinion, The Big Bang Theory has it wrong, Penny has it wrong. I am not ashamed.

The Epic Letter of Complaint

I’m not one to typically complain. I rarely send back meals or make a scene about the poor service I receive. I don’t leave complaint cards or online reviews, even when sometimes I should. I don’t like confrontation and I lack assertiveness. These are things I know about myself and am working on changing. And when I do decide to stand up for myself and make a phone call about poor service, I often get so distraught that the tears start flowing, completely undermining my efforts.

This year has been a true test of my patience and my tolerance for poor treatment. Between my endocrinology office and online mail pharmacy, I have spent countless hours on the phone or waiting to get the care and medicines that I need.

When the first incident happened, I was upset, but I let it go. It was the first time something had happened in the past 8 years so I didn’t make a big deal. When the second incident happened, I was perturbed and frustrated. I knew what was happening and the way that I was being treated was wrong. I made a complaint, but I still didn’t feel that my situation was being properly recognized and dealt with. I started thinking about switching doctors, but I still stayed. When the third incident happened, enough was enough. I was mad. Something had to be done.

I wrote this letter (email) back in June. I sent it yesterday. Why did I wait so long? Partially because I didn’t want to burn any bridges until I was sure that I wouldn’t be coming back, until I had secured a new doctor that I liked. Since this has now been accomplished, I was ready.

Why a letter? As I mentioned early, it’s often hard for me to get everything I need to say out before the tears take over. I wanted to be taken seriously, I wanted to be sure that I said everything I wanted to say. And while emotion isn’t bad, I didn’t want it to get in the way so I articulated my experiences in writing.

What was I hoping to accomplish by sending the letter? Honestly, I just wanted the office to know what kind of errors were being made and the kind of treatment the office was providing so hopefully no one else would have to go through what I went through. Yes I wanted an apology and my feelings to be validated, but more importantly, I want to be sure that other patients are well cared for and don’t slip through the cracks the way I did.

So I sent this letter. I know it’s long, but hey, a lot of shit happened that I wanted to tell them about.

Dear Mr. X*,
I have been a type 1 diabetes patient in your office for the past 8 years.
I have been on an insulin pump this entire time.
Several recent medical error events in your office have made me frustrated and worried about the care that I have been receiving.
Recently, while attempting to refill my Humalog prescription I was asked by my mail order pharmacy to call them and verify the prescription that they had received from Dr. Y. This prescription was for 27 vials of insulin, and the instructions were for me to inject 100u three times a day. I usually only require 9 vials for the 3 months.
1.       As I stated earlier, I have been on an insulin pump for the past 12 years, nowhere in my record should it be recorded that I inject insulin
2.       This amount of insulin would probably kill me
3.       I once again needed to call your office and have this corrected with my mail pharmacy so that my necessary prescription could be filled before I ran out of insulin.
When I called the endocrinology office to get the prescription corrected, I talked to a nurse who figured out where the mistake was. I told her that I needed the correct amount sent to the mail pharmacy and she assured me that she was doing this electronically as we spoke on the phone. The next day I still had not received any notification from the mail pharmacy saying that it was received, so once again I called back the office to inquire as to what happened. After checking, it was determined that the prescription was supposedly sent to a different pharmacy and not the mail pharmacy,  although I had asked multiple times over multiple communications for this insurance company mandated change.
Frustrated that this was again not what I had requested, I made sure the nurse sent it to the correct pharmacy. I then called the other pharmacy to let them know that the prescription was incorrectly called in, that I would not be picking it up, and they informed me that they never received a prescription for insulin!
This makes me question both the medical record software and whether your office ever called it in to begin with.
I was forced to once again call the endocrinology office to verify that everything was correct since I was starting to run out of insulin, and was able to get this confirmation.
It is unacceptable that this process took four phone calls to get the correct prescription to the correct pharmacy over multiple days.  As you know, insulin is essential to my health, with fatal consequences if I run out.
And this is not the first time that the lack of care from this office has occurred. Earlier this year, I drove over 40 miles taking off work, waited 90 minutes for an appointment only then to be told by another doctor at the practice (Dr. Y was not seeing patients during this time) that she had clinicals now and could not see me that day and that I would have to come back the next day. Although being compensated for the gas from your office was a confirmation of a problem, this did not instill in me any feeling that I was “appreciated” as a patient, rather that I was considered just another body to move around to the convenience of the doctor.
Additionally, during this past winter, it took 3 weeks and multiple phone calls to get a prescription refilled for my Dexcom sensors due to a misunderstanding in your office that I wanted a refill and not a prescription for a whole new system. During those 3 weeks, I was out of sensors, thus not able to use my Dexcom unit.
This event itself was totally unacceptable.  But coupled with the recent insulin debacle, it makes me question the safeguards (if any) present in your office.
As a patient, and healthcare consumer, this utter lack of respect  of my time, poor record keeping by your office,  and obvious lack of concern for my welling being shown by your staff is not only medically concerning but totally unacceptable.
I have a Master’s Degree in Public Health, and work in the Healthcare arena. I have a high level of health literacy, and unlike many, I am able to generally navigate the complicated and complex health care system. Many if not most of your patients do not have this ability. I hope that you institute changes to the offices policies and practices, so that no one else will have to go through the ludicrous process that I had to endure to get my life sustaining medication and diabetes sensors. This multiple event experience has been completely unacceptable.
If you would like to discuss this further, I can be reached at XXX-XXX-XXXX
Thank you,
Reva
*All identifying information has been removed from this letter

Five hours after the email was sent, I received a phone call from the administrative director who I sent this letter to. He apologized for my experiences and told me that he had shared my letter with their chief of clinical services who would be looking into it more and following up. He thanked me for detailing my complaint and asked me if there was anything that I wanted to add. He recognized that I had chosen to leave the practice, but hoped that I would consider them again in the future.

I don’t know what will come of my letter and if any changes will actually be made, but I’m proud of myself for sending it. The office needs to know what happened so it can protect its patients. I may not be the most assertive person, but I’m glad that this time I wasn’t silent. I’m glad that I spoke up for myself and made my complaints known. Hopefully my complaint can help bring positive changes to the practice and improve everyone’s experiences, even if it’s too late for me.

Diabetes Blog Week- Day 2



“This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.”

CGM, Go To Bed

An ode to my continuous glucose monitor


10:30 pm:

I put you on my nightstand, I lay you down to rest,
In case I don’t feel well, my blood sugar you will test.

My blood sugar is steady, not too high and not too low,
That ice cream after dinner, I hope you will not show.

An undisturbed night of sleep is what I really need,
A steady line on your graph in the morning, I truly hope to read.

Slumber is upon me, I’m drifting off to sleep,
I beg you CGM, a quiet night without a peep.

1 am: Buzz buzz buzz

Double arrows pointing up I awaken with a start to find,
Of all the arrows, up and down, you’re my least favorite kind.

Not much I can do, laying here with insulin on its way,
Groggily back to sleep I go, and hoping this time to stay.

2 am: Buzz buzz buzz

My eyes spring open, you caught me quite off guard,
My bg’s now over 180, you just had to make this hard.

My number is too high now, but I’m hoping not for long,
It may start to drop too fast, but hopefully I’m wrong.

4:30 am: Beeeeeep Beeeeep Beeeeeep

From my nightstand I hear your sound, which can only mean one thing,
“You’ve dropped below 55, wake up, wake up!” your beeps eagerly sing.

I take my fruit snacks and into my mouth I dump them all,
For the last time tonight, please back to sleep I hope I fall.

4:45 am: Buzz buzz buzz

Now you say I’m under 80, well at least I’m on the rise,
Maybe giving insulin for that high wasn’t all too wise.

Please CGM, let this be all, I’m really very sleepy,
If you wake me up one more time I may get a little weepy!

7:30 Ringgg Ringgg Ringgg

You’ve got to be kidding me, what is it now? You haven’t had enough?
With all the ups and downs this night, my sleep has been quite rough.

It’s my alarm! Time to get up; to work I must get ready and go.
Oh what’s that on the graph? A perfect number NOW you decide to show!