The phone call

So, I made the call. I contacted our area rep for Medtronic to order M's pump.

I called on a Tuesday. From work. I left a brief message as instructed. No one called back.

M asked me three times that afternoon, "Will you call again tomorrow?"

Yes, of course. Darling.

I call the next day. I leave a brief message. I state that I would not be calling again so soon, except that I have an eager 13-year-old breathing down my neck.

When I get home, the return phone call arrives.

The rep, Lindsay, is very polite, and explains to me that she has had the flu, or else she would have called sooner.

I again explain the 13-year-old neck-breather-downer, and tell her that there are no worries.

Then Lindsay does her job. Questions are asked: age of patient, number of months/years since the diagnosis, height and weight. Then insurance questions: Type, Group number, Subscriber number, Subscriber name, Subscriber's place of employment and birth date. MY birth date, address, phone number, place of employment. The insurance company's phone number and address. M's DNE, endocrinologist, clinic/hospital. Number of units of insulin currently used, what types, how often M checks her bg, how often she receives injections, how many carbs she eats per meal, and what her bg range has been over the last 30 days.

THEN, we get to the good stuff: what color pump, what style, and which infusion set. I am asked what size reservoir she will need.

How should I know?

Apparently, according to her height and weight, M is right on the cusp of needing the larger reservoir, which means a different model than the one with the smaller reservoir. Lindsay and I agree to ask the DNE her opinion on the matter. Lindsay assures me that our DNE is "great" and "very organized", and will be a good resource for the information that Lindsay is seeking.

Lindsay also murmurs something about a four year commitment to the pump, which upon further reflection is probably something I should ask about. I suspect it has to do with how often insurance will let you upgrade the pump.

I am told that Lindsay will be sending me some forms to fill out. I am to fax them back to her. After she talks with our insurance to learn how much is covered, she will then contact us to tell us when the pump will be shipped.

And by the way, it needs to be shipped somewhere where a person can sign for it. Can she ship it my place of work?

No.

I work in a high school, where over 1,000 people go in and out of the main office every day. No, no, no, not at all.

I decide to have it sent to M's little Montessori school. 80 kids, six adults, all of them responsible. Plus M can lovingly cradle the box when it arrives.

Once it arrives, we will set up an appointment for "pump training."

Lindsay sends me the (redundant) form to be signed. I fax it from a friend's house, and warn M's principal about the package that might be arriving in a couple of weeks. She expresses her excitement for M.

Fingers are crossed. Breath is held. Novenas are being said.

Soon we will know the answer to the burning question: how much is this sucker going to cost us?

Just a few more questions, Mrs. Huber.

Belly adventures

Over the next few days we discuss the infusion sets.

I, like wimp, last fewer than 24 hours with the infusion set in my body. After whining about how aware I am of its presence in my body, M suggests that I remove my pinch-y feeling mio set, with the small amount of blood that is trapped in its tube. With a nod to "if you insist," I begin the process of removing the set. This proved to be harder than I had anticipated. The adhesive was very strong. I tried pulling it off like an adhesive bandage, but I had a hard time even finding a place to begin peeling the adhesive up. I picked at it with my fingernail until I got what appeared to be a likely location to begin pulling.

Have you ever tried removing any kind of industrial five gallon tub lid? Or a paint can lid? It was a similar experience on a smaller scale. Just when I thought I had it off, some part of the adhesive had stuck itself back down again.

The jiggly belly again proved unhelpful. Pull on the adhesive, and one's belly skin, and all the charm that comes with it, also pull upward. Not to mention that I really couldn't see the set very well over the obstacles that Frank Zappa, God rest his soul, affectionately called "mammalian protruberances."

I had to summon help in the form of a 13-year-old diabetic.

M peeled up the adhesive and instructed me to pull on the device itself. With the mio, one pulls the device out straight.

I did as I was told.

It didn't hurt or anything. I dutifully placed the set in the sharps container.

M wore her sets for the two days that she was told to wear them. I, like a mother, kept requesting status reports.

I asked, "Can you feel them now?" probably about every three hours or so. M was patient. Maybe it's because she is so excited. Sometimes she would say without irony, "Oh, yeah! I forgot I was wearing them!" Then she would break into a very satisfied smile. She was truly thrilled to realize that neither device made her feel uncomfortable.

Overall she was more aware of the presence of the Quick Set than the Silhouette, a fact that surprised her a bit. After showering, she also found that the Silhouette adhesive held on better. Strong adhesive is important to M, because she really likes to swim. After day number two, M declared that the Silhouette was her infusion set of choice.

Unlike her mother, she removed both sets without issue.

So, infusion set chosen, I am prepared to make "the phone call". It is time to order the pump from our regional representative. I have been thus instructed: Minimed, dark purple, with the Silhouette infusion set. Hurry up.

Let's hope that our insurance will cover this baby!

In assorted colors! Purple, please!

Alarmed

As I have been telling people about M's plans to begin what is commonly known as "insulin pump therapy", I have realized that those not involved in the diabetic community have a lot of misconceptions about the pump.

Here are some common reactions:

"Oh my God. Is the insulin just not working?"

"How long will she be in the hospital?"

"She's choosing to have the surgery rather than take the shots?  Things must be pretty bad."

Huh.

I guess when you say "insulin pump, it conjures up images of the iron lung.

I am always pleased to tell people that the pump is a portable and removable device that will allow M more freedom and better control over her bg. That she can take it off any time, and that all it does is administer the insulin regularly, allowing her to have no injections, but instead change her infusion set every two or three days.

They are visibly relieved.

It is also my pleasure to tell people that insulin therapy has come a long way, and that M going on the pump is a good thing.

If I tell them that the darn thing helps her calculate her dose as well, I am afraid their heads might explode. I think we will save that information for when M is wearing her pump. It may be easier for people to visualize and understand when they see it and how it works.

I will have to initiate the new-to-diabetes set with tender loving care. It might be fun to experience things through their eyes, after all. It might give me a moment to appreciate the miracles that we in the diabetes world experience, rather than lament the ones that have yet to happen.

Pump visit number two : infusion sets

We drove down to Children's Hospital, incident free, for an early morning appointment. M was really excited to try the infusion sets today. This is part of our months-long plan to get her on the pump.

An infusion set is the part of the insulin pump that actually is attached to your body, and is the device through which insulin is administered. It is removed and changed every two to three days. For those of you who are having trouble visualizing this, think of it as a teeny, tiny IV. It is held in place with a strong adhesive. You can detach the tubing from it when you shower, swim, or are doing other things during which tubing might be (ahem) inconvenient.When the tubing is detached from the infusion set, the pump may be put away as well. The pump is usually clipped to a belt or something, and although it is meant to be worn continuously, may be removed when necessary.

So, apparently testing infusion sets requires an hour-long appointment. We used 30 minutes of it.

First off, M had to share which pump she decided she would like to purchase. She had spoken to her friends from diabetes camp and decided on the "Minimed" the Medtronic infusion pump. This narrowed M's infusion set choices to four: the Sure-T, the Silhouette, the Mio, and the Quick-Set.

Our DNE quickly dismissed the Sure-T as an option. She pointed out that it had two parts. The design was created for small children to prevent them from pulling the tubing out easily.

The Sure-T

M mentioned that a friend of hers had the Quick Set. M liked the Quick set, because in order to remove the tubing, one needed only to turn the knob on the set and pull out the tubing. The others require squeezing the set on both sides, which M found less attractive. The DNE said that there had been some problems with the Quick Set lately, but if M wanted to try it, it was fine. After all, her own son uses the Quick Set and has never had a problem.

 

The Quickset

The one that the the DNE clearly preferred was the mio. This is the first sample she pulled out the box. It was in a hard, plastic case. First the plastic seal had to be removed. Then we had to remove the paper/foil seal from the bottom. Then we had to remove the adhesive and the cannula cover. After that we had to flip open the top of the hard, plastic case, and pull back on the knob to set a spring, because this device would insert the cannula for you, by launching it into your skin. This one was M's least favorite option. Her first comment was, "That's a lot of trash", referring to the amount of waste generated by opening the device. Her second was, "That's really loud", referring to the loud popping noise the device made when it released the cannula for insertion.

The mio

The last one we saw was the Silhouette. The DNE pointed out that this one took a little coordination. It is inserted at an angle, after you peel back half of the adhesive. After insertion, you remove the back part of the adhesive, which means trying not to wiggle the needle around in you while you remove the backing.

The Silhouette - the needle looks bigger than it actually is.

M was only interested in trying the Quick Set. The mio looked complicated and the Silhouette's needle looked scary.

That's when the DNE said, "Who's going first?"

I thought, "Yippee, I get to insert stuff into myself. Time to man up."

But what I said was, "M goes first!"

M tried the Quick Set, and it went in without a hitch.

Then it was my turn. I tried the mio. Now, before I can truly judge how well or accurately the mio works, one must remember that the flesh around the belly of a forty-something mother of two is not as resilient as that of the 13-year-old mother of zero.

After a loud "pop", the cannula had only inserted itself part way into my abdomen. I imagine it's like the proverbial "nailing jello to a wall."

When I finally got the cannula inserted, it drew a little blood. I know this happens sometimes when M gives herself her shots, but it was not the smoothest introduction to the new device.

It was now M's turn again, but she decided she didn't want to try another set.

I put my foot down. Firmly, but sympathetically. "You really need to try another set, so that you will have two experiences to compare." To her credit, she gave me an exasperated look, but did not roll her eyes or give me an unpleasant comeback or remark. She  saw the wisdom of what I was saying, relented and chose the Silhouette. The instertion was a little fumbly, but she got it in, and said that it felt comfortable.

So here we were, all hooked up and ready for insulin. But not today. Not yet.

We were instructed to wear our infusion sets for a couple of days, so that M could choose which one she would like to use. Once she chose the set, we could go ahead and contact the pump company representative.

M and I left the office, M gleeful, I a tad aware that there was a little stinging item in my abdomen.

We are off on a new adventure. One that will lead M to better bg control, and one that will teach me more new things that I never expected to, or wanted to, know about diabetes.

Pump visit number one

As promised, we drove to Children's Hospital for our first serious discussion about getting M on the insulin pump. There was a lot of hemming and hawing about this trip. One reason we had debate and discussion: the school where I teach had had so many snow days, that M's appointment fell on the second day of the new semester. I found this very inconvenient because I do not feel great about swooping in, introducing myself to my new classes and then disappearing for a day. Not to mention that I would have to get creative and leave plans for a substitute teacher who invariably speaks no Spanish, and therefore will have a tough time getting my Spanish students to get any real work done. The excuse "but I don't get it" works very well with substitutes weak on the subject.

But then, on the day of the appointment, there was a snow day. Another one. So while there was no longer any need to worry about creative sub plans, we did have to worry about driving for what would very likely be over an hour in very dangerous conditions, with some of the country's most notoriously aggressive drivers.

So the debate became; should we go or shouldn't we?

Deciding I would rather face Mother Nature than a fully unsuccessful day with a substitute teacher, we went.

We left the evening before the appointment and stayed at a friend's house in suburban Boston. The next morning we drove to the appointment very slowly, arriving nearly an hour early.

First thing to report: M's A1C were "out of range" at 8.2,  the highest she had ever experienced. After all of the craziness of the previous three weeks, neither of us were surprised. Since we had been e-mailing our DNE for several days prior to this visit,  she was not surprised either.

Nor did she seem worried. I think I was a little disappointed that she was not more worried. I have been working pretty hard with M to keep tight control over her bg. Then to have her A1C fall apart like that was pretty upsetting.

I was worried, but I decided to move forward with our pump discussion.

After asking us a series of questions, the DNE decided to send us along the pump route. She had been encouraging us to switch to the pump, and so had the endocrinologist. M was eager to go, so I was the last hold out.  Now that I was better informed and more comfortable with the idea, I had to learn about the next steps.

It turns out that getting a pump is a months-long process, which disappointed M very much. But at least we were starting.

The first step is to choose an infusion set and a pump. Apparently we needed to have a special appointment for that purpose. I could not imagine why we couldn't do that part today, but maybe the DNE needs to put an addition on her house.

Step number two is contacting the sales representative for the pump that M chooses. Apparently the rep will talk with our insurance company and determine how much will be covered, and let us know how much we will pay out of pocket, which will likely be in the thousands of dollars (which, by the way, we don't have. I foresee a lot of phone time with the insurance company).

After that, the pump is ordered. Then we make an appointment for M to get it fitted, and for her to learn how to use it. Then she basically pretends to use it as saline is pumped into her body. Evidently, one of her parents will have to wear a pump too, so that we will understand how it works, etc. This is done for two weeks.

After the two weeks, M is then given real insulin for the pump, and she begins flying without a net, so to speak. Then she is checked at the hospital after one week, then two weeks, then one month, to make sure that she is using it correctly. This means a rather large number of drives into the Boston area, and while I have some obscene number of sick days available to me, I hate missing my classes (see above: substitutes, blah, blah, blah).

M left the appointment excited. She had brochures in hand, and a plan to talk to her friends from diabetes camp on facebook to learn which pump they preferred and why. Then we would schedule her infusion set appointment.

The long, snowy trip back home was slow, but M was thrilled with the first steps toward her new method of managing her diabetes. She clung to her brochures and flipped through them, talking about colors and designs she could have on her pump, and dreaming of fewer daily injections.

Soon enough, M. Soon enough.

Gross

My daughter is strong. Determined. Beautiful. Awe-inspiring. And she has no idea how to maintain a life without carrying bio hazards around with her.

In other words, she is also kind of gross.

I understand that sometimes we just don't feel like getting off of our butts to throw away the needle that we just used to inject insulin into ourselves. I can even understand not moving it off the dinner table while we eat. I CANNOT understand how it can stay there for more than three days.

Ew. Just ew.

Signs of diabetic slobbery are evidenced all over our house. The syringe next to the computer. The sanitary covers from the pen needle caps on or under the dining room table. The used test strip on the bedroom floor.

Sometimes when M reaches into her kit to give herself a shot, she spends a lot of time digging around in there.

"What are you looking for?" I might ask.

"Nothing. I'll find it," might be the reply.

There is a distinctive sound that emanates from a fanny pack full of used pen needles, their foil protectors, and their safety caps as they are methodically shoved around and pawed as M searches for the one lonely unused item in the bag.

There is a shimmery appeal to the myriad foil wrappers containing used test strips as they cascade from the bg meter case to the floor. Sometimes there are up to thirty of them.

Again, ew.

There is a proper procedure for handling bio hazardous waste. We apply this method when it is brought to our attention that M hasn't been holding up this end of the diabetic bargain.

1)Remove all used needles, lancets, syringes from wherever they are being stored. These, in the medical field, are called "sharps".
2)Put the sharps in a designated "sharps" container. You may purchase official red bio hazard marked plastic containers for this purpose. With all of the perfectly intact plastic containers around, this seems a bit ridiculous. At my dump (no garbage collection in my little New England town), the dump guys tell us to use a sturdy plastic container.
3)Fill up the container, seal it with duct tape, and write "SHARPS" in big letters all over it. In Sharpie, please.

In fact, my dump guys like us to use the new plastic coffee cans with the handles on them. They like us to use them so much, that our dump guys set these canisters aside for us behind the cardboard crushing machine.

Talking to the dump guys is very educational. I learned that some of the residents in our little town just throw their needles in the dump without marking them. Once they had to pick syringes out of a clothing box on site.

While disturbing, I do know that M does a slightly better job than these folks. The sharps do eventually make it to the coffee can. The idea that other people might not be happy to see used medical supplies on their eating surfaces, however, may be forever lost to her. I equate it to the moment I was giving birth. I didn't care who was there, what was going on, or how messy it was, people were just going to have to deal with it.

I wonder if that is how M sees her diabetes. Maybe she figures that if she has to suffer, the rest of the world should have to suck it up and suffer right alongside her.

So yeah, ew.

But maybe also, "you go girl."

Maybe.

What a black shirt has in common with your A1C

I have some great pajamas. They are warm, cozy, and (most importantly) flattering. The bottoms are pink and black plaid flannel, and the top is 100% cotton and all black. And they are tagless. Tagless pjs are the best invention ever, because they are so comfortable.

Frequently, however, I climb into bed late at night and, sometimes in the spirit of conservation, and sometimes because my beloved husband is already asleep, I put on my pajamas in the dark.

The bottoms are no problem. There is a drawstring in the front, which allows me to determine which way I should insert my legs for maximum comfort.

The top, however, presents some challenges. First of all, as I mentioned, it is black. When the light is out, my top sort of blends in with the atmosphere. Secondly, it is tagless, making it far more challenging to face the top the correct way whilst inserting my head into the neck hole.

Yes, I feel around, to see if I can differentiate the slightly rougher surface of the print that replaces the tag.  Or, sometimes I hold it up to my face so that I can try to decipher the white print against the black fabric. Neither of these actually provide me with enough certainty to feel 100% confident that I will put the shirt on correctly.

But, nearly always, I do.

I hadn't thought about how lucky I had been on the shirt front until last night, when I put it on wrong.

I realized that putting on this black tagless shirt in the dark was a lot like trying to get good A1Cs. I know I have mentioned these ethereal numbers in previous posts, but I still feel like I don't understand how M manages to get good numbers regularly.

Like the shirt, I have some clues, but they are not always easy to see or reliable.

Clue number 1: You have bg levels "in range" (aka "good") somewhat regularly
Clue number 2: Your insulin doses have been "reasonable"
Clue number 3: Your carb count has been "in range" (aka "reasonable")

Do you see how vague this is?

I have to confess that there have been months where M's bg levels were more or less all over the place, but her A1C count was 6.5. In diabetesland, this is considered very good, especially for a young person.

Don't get me wrong. We all try very hard to keep her on course. We have her measure her food. We double check her math, and adjust her insulin doses to keep her bg levels "in range", but sometimes I feel like we are just winging it and getting lucky.

I will have to keep you posted about M's A1C results at her next appointment with her DNE. After all, with all the crazy bg levels she's had over the past few weeks, the data would seem to indicate a poor ("out of range") A1C level. But who knows?

I don't know if M feels the same way about her A1C results as I do. She always seems both relieved and proud that her A1Cs are in range. She also takes it very hard when they are any higher than 7.5.

Very hard.

It's not that she is a perfectionist or anything, but sometimes I think that she feels that all of the hard work she does just isn't worth it.

I hope she will always remember what she told me a few days after she was diagnosed:"I hope I will always remember how bad I felt before I was diagnosed, so that I will do everything I need to."