Moments of Wonderful

…rather than a lifetime of nothing special. A blog about diabetes and other moments.

...rather than a lifetime of nothing special. A blog about diabetes and other moments.

The bad, the good, and the confusing

Update:
I called MY endocrinologist’s office this morning at 10:15 to get clarification on the test results.

At 1:30 I called back again, and stated that I would like to be called back – even it if it was just to say they are working on it.

At 2:45 I called the appoinment line because I knew I would be able to speak to a “live” person. She transferred me back to the same message system I had left two messages with already.

I called back and said that I would like to stay on hold until I could talk to a person. I stayed on hold for 20 minutes and then they said that someone would call me back. I told them that I had already left two messages that morning.

The receptionist responds, “well, the phone message says we guarantee a call back in 48 hours.”

Which is great (I mean it’s not) but also… it doesn’t.

What it actually says is that if you call after 4 pm your call will be returned the next day.

She finally decided that she needed to transfer me to the research facility. She actually transfered me to the doctor’s office affiliated with the facility. That receptionist listened to the whole story and promised that she would call me back by the end of the day.

At 3:59, the research coordinator that started this whole nonsense called me back.

She said she talked to the doctor (which is great since I haven’t yet been able to) and he has no idea what could have caused my odd lab work. Since they don’t know, they want me to repeat the labs in the morning (Tuesday).

She asked if I had received my copy of the lab work. I told her I had not – that the only information I had was the information from her on Friday afternoon. I told her it has been incredibly frustrating to have just enough information to worry about and not enough information to do anything with it.

Along with the worry and anxiety, I keep thinking about the fact that at least I know how to advocate for myself. I can’t imagine what is happening to patients who don’t know how to speak up for themselves.

I mentioned a while back, that I was taking the steps necessary to enroll in a research study connected with my endocrinologist’s practice. The title of the study is a long one “ASPIRE (Automation to Stimulate Pancreatic Insulin Response): Pivotal In Home study to determine safety and efficacy of the LGS feature in sensor-augmented pumps.”

On Tuesday I completed the screening and informed consent appointment. This involved reading and completing the 18 page information and consent form. I still want to write more about that because I don’t think it’s often that we experience the opportunity to participate in research and it is an interesting process, but that’s not where my brain is at right now.

My brain right now is focused on the results of the lab work. The primary objective of the lab work was to ensure a negative stimulated c-peptide result. Study participants also had to have an A1c between 5.8% and 10.0%. There was a full-page list of items that would exclude a participant from the study.

I left the appointment with a second appointment scheduled for Monday pending my lab results. I had not heard anything from the office, so I called this morning to find out the next step. The study coordinator called me back after lunch, and that’s where things get messy.

First of all, I did not meet the inclusion criteria for the study based on my A1c results. I am not sure how accurate the A1c results were based on the fact that I had donated blood two weeks prior. It is what it is.

Then the study coordinator shared additional lab results with me that make absolutely ZERO sense on the lab report. Results that need to be interpreted by a doctor to provide clarification. Results that could mean absolutely nothing and are nothing more than a fluke. Results that could point to very early evidence of a diabetes complication. Or results that could be very scary.

I don’t know what the results mean because by the time the coordinator called me back, all of the doctors had left for the day. She could not have a doctor talk to me, send me the results, send the results to my doctor, or do anything else without the signature of the investigator and again, he was gone for the day.

The more that I think about it, the more I find it completely ridiculous that this so-called research institute would be so irresponsible. It makes me angry that they would mention results that they have no idea how to interpret like they are no big deal and leave me with the weekend to worry (and google) about what they mean.

It makes me angry that a study coordinator with absolutely no medical training would be allowed to share results with a patient if that coordinator does not have enough medical knowledge to interpret the results. The same study coordinator that was already on my bad side for commenting that I was taking “a lot of insulin” for the nutritional supplement that was used during the lab (1 unit for every 8 carbs in the mornings, not that it is anyone’s business but also not “a lot of insulin”).

So, that’s the bad and confusing news from today. I am trying to find the bright side – the moments of wonderful (*rim shot*). The good news is that even with a margin of error, I have an A1c that I am satisfied with and also that now I have the opportunity to participate in other research projects. Had I met the criteria for this study I would not have had the opportunity to try the mySentry. Now that decision is back on the table. Maybe worrying about that decision will keep my mind off worrying about these stupid labs.

Yeah, not likely.

The phantom site

There are a bunch of different locations where I can put an infusion site or a DexCom sensor. I’ve been known to wear them on the back of my arm, on the side of my leg, on my stomach, and on my love handles.

After using my love handles for both sites and sensors exclusively for many, many months I’ve stopped using that area altogether for a few reasons.

First, I think I was developing some scar tissue in the area because my response to insulin settings that worked in other areas were not working there. The second reason was a concern about insulin induced lipohypertrophy (don’t google it – eww! It is basically the build up of fat around a frequently used injection site). I am battling some stubborn pounds, especially around my love handles, and continuing to inject insulin there just didn’t seem to make sense.

The only problem is that I don’t think my body got the memo. I’ve been experiencing something I can only describe as phantom site pains.

Every so often I will lean a certain way, or my pants will rub a certain spot, or I won’t do anything at all and I will feel a sharp pain in my side. That same pain I used to feel when my clothes would rub a site wrong, when I got my tubing caught on a doorknob, or bumped my CGM against a doorway.

I reflexively reach for my side to adjust whatever device is acting up and remember that there is nothing there.

So here’s my question, it is truly phantom site pains or are there little pieces of metal floating around inside me that every so often try to poke their way out? The nickname for the old Phantom cartoon was “The Ghost Who Walks” so is it possible that it is both?

I started thinking more about this issue after reading Kim’s reflex theory post. We really are an odd bunch!

Wordless Wednesday – Lab Rat

*almost wordless

first set of labs
After reviewing my medical history and the 18 page informed consent, walked over to the lab for the first set of blood draws. After the draw, I had 5 minutes to drink 1 1/2 Boost meal replacement supplements.

waiting for results
I had to wait two hours for the second set of lab results. The waiting room was a little claustrophobic with other patients so I headed outside to enjoy the beautiful weather. Yes, this is right outside the door of my doctor’s office. Yes, I realize how lucky I am.

still in the lab
It wasn’t so much the food that I missed while fasting for the test, it was the Diet Pepsi. I have my first one around 9 am each morning (think of it as cold, bubbly coffee if that freaks you out). I was not allowed to have anything other than the Boost during the two hours either. You better believe I cracked open the Diet Pepsi I had with me the moment the band-aid was on – still sitting in the chair in the lab.

Ode to a lancing device

Last week in LA, I left something behind.
Didn’t know what to do, thought I’d lose my mind.
Hiding under the bed on the hotel room floor,
Sat the lancing device I’d do just about anything for.

I read about this tool years ago on the internet
Looking for an alternative to the blood sucking bayonet.
All lancing devices are not created the same,
Some are designed to poke while others just maim.

With lancets preloaded in the shape of a drum
It won’t cause me pain, or make my fingers feel numb.
Eleven depth setting are offered for skin of all type
Personalized comfort, one less reason to gripe.

The design of the drum reduces side-to-side motion
Which reduces skin tearing, a beautiful notion.
A beveled edge on the lancet cap lines up on my skin.
Testing with anything else, may as well use a pin.

I complained last week on Twitter about my poor finger.
The pain from other lancing devices was starting to linger.
A DM brought me quickly to customer support,
Where I found out my pain would soon be cut short.

Late Friday afternoon a package was delivered to my door.
Seeing the return address on the box, my heart started to soar.
I love my MultiClix, which by now everyone knows.
And with that this beautiful poem now comes to a close.

On a slightly more serious note, this morning I am headed to the research institute connected to my endocrinologist’s practice to complete the labs necessary to qualify for the Aspire study (low glucose suspend in an insulin pump). After fasting last night, I will be drinking a meal replacement drink in the lab and have blood drawn over a period of four two hours to check for my levels of pancreatic function and a few other things. I’m a little nervous but excited to see what will happen!

Origin story

The extra days that I had off work this weekend (Friday and today) gave me a little extra time to uncover some pictures of the first few months with #Bes and #notBes (Rose).

I don’t remember them ever being that small but other than that, not much has changed. They still both appreciate a good nap, Rose is usually found somewhere that she’s not supposed to be, and Bes is usually folded up into some awkward contortion.

Rose in the window
Bes in the window

“If there is one spot of sun spilling onto the floor, a cat will find it and soak it up.” (source)

so tired

“A little drowsing cat is an image of a perfect beatitude.” (source)

always touching

“One is never sure, watching two cats washing each other, whether it’s affection, the taste, or a trial run for the jugular.” (source)

so tiredsleeping together again

“You cannot look at a sleeping cat and feel tense.” ~Jane Pauley (source)

always where she shouldn't be

“Cats never strike a pose that isn’t photogenic.” ~Lillian Jackson Braun (source)

giant Rose paws

“No amount of time can erase the memory of a good cat, and no amount of masking tape can ever totally remove his fur from your couch.” ~Leo Dworken (source)

sleeping together

“Two cats can live as cheaply as one, and their owner has twice as much fun.” ~Lloyd Alexander (source)

baby Bes

Since each of us is blessed with only one life, why not live it with a cat? ~Robert Stearns (source)

He’s not here!

It’s hard to celebrate holidays so far away from my family. Thankfully I have always been known to have my camera and video camera running so I have some precious memories of past year’s events.

I posted this video last Easter, but it is just too perfect not to share again.

Happy Easter!
He’s not here!

Back in time

Yesterday I had to dig deep into my photo archives to find some photos for a project. While I was there, I happened upon some pictures of #Bes and #notBes as tiny little babies.

I’m still working on editing most of them, which is taking a bit longer because #Bes insists on being nearby any time I sit down at the computer. Evidently, that is not a new trick.

helping at the computer

“Cats are dangerous companions for writers because cat watching is a near-perfect method of writing avoidance” (source)

P.S. Can we all take a minute to appreciate the GIANT monitor with the wireless network adapter perched on top? When I started this blog I was still using both of those – wow!

85 percent mortality rate in the first year

Imagine if eighty five percent of people diagnosed with diabetes in the US did not live past the first year.

If you lived as little as 710 miles away from where you live now, that could be a reality for you and your loved ones. 710 miles is the difference between living or dying with diabetes. 710 miles is the distance from Miami to Port au Prince.

I traveled to Haiti for the first time six weeks after the earthquake in 2010. At the clinic that I visited, this was the collection of diabetes supplies for their patients.

diabetes evidence

Do you see the vial of insulin and the canister of test strips in the lower left corner of the picture. That’s it.

When I returned in 2011, I asked if the clinic had ever seen anyone with Type 1 diabetes. They had not. There is a simple and devastating reason why – they are not living long enough.

During the Medtronic Diabetes Advocates Forum, Dr. Francine Kaufman described the recent advocacy work that she had completed in Haiti.

It blew my mind to hear someone who has combined two of my greatest passions – diabetes advocacy and improving lives in Haiti.

I know this video is long. Please watch it anyway.

As Dr. Kaufman states, Life for a Child is keeping children with diabetes alive around the world.

If you just read the sentence above, you can’t ever say you didn’t know. You can’t say that you didn’t know that people around the world are dying because of lack of access to the basic tools of diabetes management – insulin and test strips.

The question is – what are WE going to do about it?

simple_img_6 Clicking the Life for a Child icon will take you to their donation page.

I posted this on Faith Friday because my faith motivates my advocacy efforts. What motivates your advocacy?

Medtronic Diabetes Advocates Forum Disclosure: Medtronic paid for transportation, meals and my hotel room during the forum. Any activities outside of the forum (such as taking my friends to the Santa Monica Pier) were my expense alone. I was not paid to attend or write about the forum.

You can read more about my disclosure policy here.

Closing the loop – to the place where it doesn’t hurt as much

One of the most exciting sessions during the Medtronic Diabetes Advocates Forum was hearing from Lane Desborough. Lane’s team is working on closing the loop in diabetes management.

Lane has the ability to explain a complicated process in a way that is easier to understand. The video is a little quiet so make sure your speakers are all the way up. I included some subtitles on the actual video to highlight some of the key points.

“The idea of closing the loop is to transfer variability and variation from the place where it hurts to the place where it doesn’t hurt as much to make humans’ jobs easier.”

If an artificial pancreas is like cruise control on a car, then we have to figure out a way to shorten the response time. Can you imagine hitting the brakes and have your car respond 25 – 40 minutes later (insulin action time)?

There are 1000 tasks to living successfully with Type 1 diabetes (I am willing to give over control of a few of those!)

They are working on figuring out a way to “give the humans the tasks they’re good at and the computers the tasks they’re good at.”

After the presentation we were able to meet with the rest of Lane’s team. I am not kidding when I say that there are actual rocket scientists working on closing the loop.

We were not allowed to take pictures in the area, but all of us were standing there amazed at the process and the progress of the team. I am not kidding when I say that the next step in artificial pancreas technology may come from a collection of post-it notes on a white board.

Medtronic Diabetes Advocates Forum Disclosure: Medtronic paid for transportation, meals and my hotel room during the forum. Any activities outside of the forum (such as taking my friends to In N Out Burger) were my expense alone. I was not paid to attend or write about the forum.

You can read more about my disclosure policy here.

mySentry means my security

During the Medtronic Diabetes Advocates Forum, the group was given a demonstration of the mySentry Remote Glucose Monitor.

Others including Meri and Will have written extensively about the product and its benefits.

I have lived alone for most of my life with diabetes. I have been using a CGM since September of 2010. I used to think that I was a light sleeper. Since using the CGM, I have realized I am not.

My CGM used to live on my pillow as I slept, but I still missed the alarms. Then I saw a suggestion from Kerri that I could put it in/on a glass to amplify the sound.

Regardless of any tips or tricks, the first thing I do every morning is click the button to check my CGM to see how many alarms I missed the night before. It is frustrating and it is scary.

And here is the big disclosure. During her closing remarks, Nancy Katz, the Vice President of Consumer Marketing shared with the group that they were offering us use of the mySentry and any products needed to use the device (pump, sensors, etc) for three months.

I am very excited about this opportunity. However, I realize how it sounds.

It isn’t fair.

I 100% agree that it isn’t fair that I will likely to able to use this product and many other people who need it just as much as I do are not able to afford it.

Part of the reason the forum attendees were extended this offer is to hopefully make it easier for everyone else to obtain products like this one. Insurance companies need to see the value of the mySentry before making the fiscal decision to cover it. Those from the forum choosing to use the mySentry will agree to share their data for research purposes.

As I mentioned, this news was announced at the very end of the forum and I don’t know any details other than what I shared here. Please feel free to contact me by e-mail if you have any questions or concerns.

Kim also posted about the mySentry today. Read it here.

Medtronic Diabetes Advocates Forum Disclosure: Medtronic paid for transportation, meals and a hotel room during the forum. Any activities outside of the forum (such as a visit to Sprinkles cupcakes) were my expense alone. I was not paid to attend or write about the forum.

You can read more about my disclosure policy here.