Tuesday, March 27, 2007

Minimed Minilink--My Order is in!

I did it! Today I put in my order for the Medtronic Minimed Minilink REAL-Time Transmitter and upgraded my 712 to 722. I have to say, in the blog that got erased by a blogger error; I discussed my hesitance to buy this thing. I could have ordered it a week ago, but I didn’t. I really can’t explain what was happening in my head, but I suspect I wasn’t sure I deserve to have it (really, that is not a self-loathing statement, it is just a fact, everyone and everything can seem to be a higher priority than me-- I am working on this).

I was put off ordering for three days because I couldn’t order with a live person on the phone; it had to be an internet order. I think that is stupid. I am spending $2,000 up front and I can’t talk to a human about my purchase? BUT today a woman at Medtronic answered my call and she was delightful. She helped me figure out a BUNCH of stuff regarding my account and she got me to a person who could tell me how to do the order online and gave me some tips for moving the process through the doctors, etc. Customer service is important to me, especially with an investment like this.

So, I have to be honest. I haven’t researched this thing as extensively as one would think. I am buying a lot on faith and really good marketing. Seriously, the transmitter is tiny, the claims are good and I get to stay with a company I have been relatively happy with. Haven’t heard many negative comments, except from other manufacturers, but since it only lasts for one year, I figure if it doesn't live up to expectations, I can trade up for a new technology in a year. Perhaps the Johnson & Johnson Animas CGM/Pump, which is in trial right now, will be the next superstar.

I had a REALLY bad morning with my daughter. She was high all night; started high, gave an adjustment, came down a little at 2 a.m., so I thought she was ok. High again at 7 a.m. It was time to change the ((((((DREADED INFUSION SET)))))))!!

My kid is the sweetest, most loving child, but this morning I wanted to toss her out the window. She screams, squirms, wiggles, cries, sniffles, goes to the potty, sobs and hides under the coffee table when it is time to change her infusion set. The drama is all surrounding anticipation, she hate the sound of the inserter click and has very little to do with the actual experience. It took 45 minutes to get the thing on her and then I got a call from school that she was high post-breakfast. I was confident we had a good site, so I had her correct again, even though the pump said 0.0. She was great the rest of the day. You know, I kept my cool for 42 minutes; loving, caring, compassionate, but the last three minutes were where the window became a serious option for resolution. If anyone has really good advice for dealing with a 6 year-old and changing infusion sets peacefully, without threats of “no TV every again!” and emotional breakdowns, I would love to hear!

Photo from (and I only wish that was my belly!)

Saturday, March 24, 2007

I wrote a brilliant blog...

But blogger had an error that erased it. No going back, just POOF! Brilliant prose, words that came forth like a pure gift, gone in milliseconds.

Learned a lesson--write in Word first!

Monday, March 19, 2007

Today's My Birthday!

I am the luckiest person in the world. I have a great kid and a super sweet husband who loves me dearly. The weather in Austin is spectacular; the day started with a little rain and it smelled delicious. It ended crisp blue sky's, puffy clouds, then a spectacular sunset--all for me on my birthday!

Thursday, March 15, 2007

I Made Dinner Joyfully

What the heck am I talking about? I say often that I hate cooking, but it isn't true. I just have an unappreciative audience. At six my lovely child has decided she hates everything to eat. Not just somethings, but when I ask, "Do you want pancakes or french toast for breakfast?" She simply says, "No." "Do you want cereal then. or a banana?" "No," again. The list goes on and on and I am pretty sure this is her attempt to control the entire household since food/cooking is my Achilles heel.

Therefore, I have taken my life in my hands and begun cooking things I like. I plop it right in front of her ungrateful six year-old person and watch her eyes role into the back of her head. She grunts and sags her shoulders, even if the main course is Mac & Cheese. I go back int he kitchen to fix my plate and as I turn on my heel I say, "eat one bite of everything on the plate." She moans, she gripes and even slides out of her chair with tears in her eyes on to the flow. "I've tried it before and I'm allergic!" she claims.

"Oh! Well, This is what you are having." I know most grown ups have done this for years, you know, call the shots, but ever since Ruby was diagnosed with diabetes at age three (almost four) I have placated, catered and bent over backwards around food.

I remember sitting with the dietitian in the hospital talking about her diet feeling SO guilty for giving her so many Cheese Puffs--the natural, organic kind, but nonetheless, Cheese Puffs. In her third year of life, she potentially consumed 1/3 of the national average worth of cheese related products. I'm not sure she ate anything without cheese: Cottage, string, cream, mac &, cheddar cubes, grilled, puffs. But I pined over the frequency of Amy's Organic Mac & Cheese she ate.

The dietitian looked at us funny and said, do you have any idea what most Americans feed their kids?

We never let her have candy, only maybe at Halloween and at birthday parties, but after DX I didn't want her to be different from the rest of the kids, so candy and cake were now OK, after all I knew the carbs.

Anyway, parenting is a funny thing and you have to catch yourself accommodating.

Wednesday, March 14, 2007

A1C Results Are In--10 Percent Decrease!!

Howdy Folks!

I just got my A1C results and I saw a nearly 10 percent decrease in my A1C since the beginning of the Freestyle Navigator Continuous Glucose Monitor Trial. When I started I was at a shocking 8.3 and my results were 7.5 after three months. As I have mentioned, it took me a good while to get the swing of how tightly I could control my diabetes with the flood of continuous readings. I also discovered how drastically my hormones affected my blood sugars at minimum of seven days PMS. I ran around 200 for well over a week each month of the trial only to get my alternate basal pattern adjusted to hopefully a good range for next month. So I can only imagine how nicely it would have come down if I had the CGM for another few months.

I've been talking with my Minimed Rep and I really want the Minilink. It appears you can wear the sensor for as long as 15 days (although 7 is recommended), but that changes the affordability factor considerably. Initial investment will be $399 to upgrade my 712 to the 722 pump, then $1,000 for the transmitter, which includes 10 sensors. I am going to work to get insurance to cover this thing and use my own statistics to show its benefit. I am sure they have lots of stats from their own study to show impact on blood sugars and A1C results too.

I have to say, it has been really hard to get motivated to take my blood sugars regularly. My motivation over last weekend was largely fueled by my enthusiasm at the end of the study, but before this study I was not looking after myself like I should(duh, 8.3 my highest A1C reading in 10 years or more). It is so easy for me to turn my attention to my child's diabetes and I almost feel justified in neglecting my own health. It isn't a sadistic thing, I am a mom and we tend to look after everyone before ourselves anyway; with a child with type one it is especially strong draw to forget about yourself.

Anyway, my blood sugars have been really tight when I check, but I trend toward low and don't have a lot of awareness. So, I'll keep drawing blood until I can afford to jump into the CGM with Minimed.

Tuesday, March 13, 2007

Makin' a Baby; Oh Yeah! I Have Diabetes--Part I

So, my husband and I said one day in November 1999, “Let’s do it!” Literally. We had thought about having a baby for years and it was so easy to say, “We are going to start trying in a couple of years.” I had a great job that kept me busy, we loved our life. There was plenty of reasons to keep the future at bay.

Well, I was telling a friend and work colleague at lunch one day that we were thinking about trying to get pregnant in about six months. I included a litany of reasons and justification for the wait, as I always did. She had to work to catch my darting, justifying eyes and when she did she said, “Why don’t you just do it?”

I just looked at her for what felt like 20 minutes. “Do what?” I said. She looked at me and said, “Why don’t you just get pregnant?” My mind began to race with 10,000 reasons, excuses, and useless thoughts about why that wasn’t possible, now, but they quickly subsided. I was just given permission to procreate. No doctors warning me the diabetes makes it too hard, no mother worrying about me, just a quiet warmth in my chest; the kind You get when you know the answer is right in front of you and I said, “Hmmm. OK!”

I went home that evening from work, buoyant and bubbling inside. “Let’s do it!” I said jumping to give Marshall a hug. He was thrilled for more reasons than one. Somewhere between having a lot of fun and actual conception, Marshall and I talked a lot. He was worried. He was worried about me and my diabetes first and he had a nagging worry, “What if our baby gets diabetes?” I would respond lovingly and reassuringly, “What are the chances, baby?” I would then follow with statistics provided by the doctors; if Marshall had diabetes, we would only have a 25 percent chance of having a child with diabetes. He didn’t have diabetes, so our odds were seven to nine percent. Don’t you love statistics?

I got pregnant in one month, which was a TOTAL shocker. My mother spent a year trying to conceive my sister and me. I totally freaked out. After doing some math on a plane home from San Francisco where we were celebrating the Y2K New Year, I realized why I felt so bad. I felt kind of sick most of the trip and luckily, this kept me from overindulging during the New Year celebration.

We landed in Austin at 11:30 p.m. and I had to pee. I held it. I held it waiting for the luggage, waiting for the cab, waiting on the ride home (which was really fast with this particular cab driver). I ran in the house and found my pregnancy test and finally peed—THANK GOD! As I sat there with my purse still on my arm, my pants around my ankles and the cat meowing hello to me, two pink lines appeared. OH MY GOD. Oh my God, oh my God! What are we going to do? I AM PREGNANT.

I ran out to Marshall who was on the couch waiting for me. We were thrilled and in shock that what we did about 15 days ago would so drastically impact the next 20 (to 50) years of our lives.

What this meant in terms of my diabetes was total fear and paranoia for the first 20 days. I was terrified. I took my blood sugar every 20 minutes and it fluctuated wildly. For every reading outside of normal I felt like I was damaging my baby—I was a mess.

The first 20 days of my pregnancy were filled with guilt as well. Why did I do this and not get my blood sugars in perfect control first? What am I going to do to this baby with my blood sugar hitting 300? Then my friend, the one who said, “Why don’t you just do it,” told me to chill the hell out. She reassured that if I would just stop freaking out that everything would be fine. I was given permission to relax, like I forgot that was an option. "Of course, just chill out! I know how to do this diabetes thing. I can take care of myself and Marshall will help me." A huge weight was lifted off my shoulders and sure enough, in the days that followed my blood sugars stabilized. It was almost as easy as that.

Saturday, March 10, 2007

Minimed Minilink Available Monday, March 12, 2007

New Minimed Minilink will be available Monday, March 12, 2007

I am so excited about this. I am only 24 hours sans the Freestyle Navigator CGM and desperate to *know* what my blood sugar is. For the first time in history, I am checking my sugars religiously and logging it into the CoPilot program I still have downloaded on my computer. I had to return the CDs and the bluetooth device, but I can manually input my food, insulin, exercise and blood sugar readings and still benefit from the excellent visuals this program gives me.

Photos from Drea:

Friday, March 9, 2007

Adios Freestyle Navigator--May be Avail. Dec. 2007!

I went to return MY Navigator today. I shed a single tear as I ripped the adhesive from my arm, pulling off my last sensor. They downloaded my info and I filled out a very long survey similar to the last one with questions about the trade-off of having a smaller sensor (See my post on January 14, 2007). There wasn’t a comment page, so I said if you want to know what I really think from the perspective of my daily use go the I did manage to squeeze in some notes into an area of the survey that had room for comments about things that had nothing to do with my actual thoughts.

My Endo came in to look over my readings and was shocked at my last week. I was in the green—that’s normal-- almost all the time. He noticed my sharp drops to almost-low post meal and we changed my bolus ratio slightly, but overall I am kicking booty.

I spent a lot of time with the woman who works for Abbott Diabetes and who is responsible for this trial. I sat down and told her what I thought. First, I told her how impressed I am with the Navigator; that this is the best invention since insulin. I described how it saved me from countless lows and in the very last week of the trial I fully realized the power of constant readings—we made such minute adjustments to my bolus wizard and basal rates that I am in really good shape for a while. BUT without checking in with my CDE or Endo on a regular basis, I could not have realized what this information means for my control. I also told her about the issues that I felt needed addressing (also see Jan 11 post).

So what else can I tell you? OH! I think the Navigator may be out before Christmas! She wasn’t specific, other than to say it is probably coming out this year.

Wednesday, March 7, 2007

I went to the doctor and the doctor said...

...I have a bunch of changes to make. This is my last week with the Navigator and I am beginning to get pretty bummed about that. Yesterday I met with my diabetes educator, who hung the moon, and we looked at my blood sugars from the CGM on the CoPilot software. She'd look at day after day of readings and say, "See here, you are dipping a little at 5:00 a.m. and you seem to be rising after lunch each day."

There is NO WAY she could have ever seen those changes without the CGM. We made a new pattern for my week (or two) of hormonal changes after I ovulate (TMI for you guys, but I bet you have hormone fluctuations, too) and we made many adjustments to my basal rates and also to my sensitivity.

I also learned that my older version of the Minimed pump (712) does not have a way to change the duration of the insulin board based upon what kind of insulin you use. It is automatically set to assume that it is hanging in there for eight hours after a bolus, whihc really messes with correwctions post meal. I have seen with the CGM that two hours post meal (where I had a correction with my meal) it says 216. I try to do a correction, but it says 0.0, assuming I have insulin on board that will cover the high. I check again at four hours, still high and says no correction, BUT, the insulin is long gone. SO, now if I see highs four hours after a meal or correction and my sugar hasn't gone down, I will ignore the 0.0 and do the correction.

I would have ever seen the subtly and nuance of my blood sugars and reaction to food without this thing.

Can you hear the woe in my voice? I talk about this CGM like it is a friend who has walked away from me to hang out with the cool kids. Of course, I can just go buy the Minimed version, but I want the smaller sensor; I want second generation technology, not the huge two piece unit. I want one with the kinks worked out. So, I wait and I guess I'm going to have to check my blood sugars more than a couple times a day.
HOWEVER, I have today, Thursday and the morning on Friday to use this tool and work out the kinks of the changes we made. Pretty drastic changes and I am excited to see if they fix my low-highs (low 200s).

Headed to a press conference at 11:00 a.m. at the Texas State Capitol where a very positive stem ell research bill that supports research for degenerative diseases and conditions (that means diabetes) will be announced.