Sunday, April 29, 2007
Yesterday we had the pleasure of meeting two other families living with T1. Moms with kids going to Camp Sweeney decided on a play date before the kids head off to camp and we met at Central Market (a lovely grocery with outdoor play area and great live music). The three girls played on the playscape and moms chatted about all kinds of stuff, but the focus was on diabetes and how we handle so many of the complicated situations we have with little ones with T1.
My girl was pretty nervous; she is six and a half and the other girls are eight, but they were so sweet and asked my girl if she wanted to play. Last night she told me how much she loved meeting the girls and one of the moms is pulling together another group before the one week mini-session at Camp Sweeney (Camp Sweeney is an overnight camp for children with diabetes that lasts one week for the mini-session and three weeks for the regular sessions). My girl surprised me when she said she wanted to attend.
Anyway, it is so nice to be developing a community of friendships with kids who have T1. My daughter also attends Camp Bluebonnet (also for kids with diabetes), which is a day camp about an hour from Austin and that is another place where these kids will grow their friendships. When I was diagnosed at 14, I knew only one kid with T1 and she abused her body. She gave up trying early in her adolescence and I didn’t like to be around her, because her attitude was so bad. I never got the chance to go to Camp Sweeney and I’m a little upset my parents didn’t encourage me to go. I didn’t understand at the time how cool it would be to hang out with kids in my same position.
Anyway, my daughter has the opportunity and I hope it grows healthier attitudes and wonderful friendships.
Thursday, April 26, 2007
She had the same issue, finger test 227, CGM 147 with two down arrows even. She reported two Cal Errors and a Bad Sensor yesterday, so she switched out everything feeling a little frustrated that the sensor only lasted three days. Today she was working out (with new sensor) and the CGM kept giving her LOW alarms showing a blood sugar of 40 for an hour. She tested every ten minutes while this was happening and got finger test readings of 140-240. What gives?
Today is sensor day four for me and I got two Cal Errors and a Bad Sensor. I wonder if we have a bad batch of sensors?
Wednesday, April 25, 2007
The women were fascinated. We even practiced counting carbs and there was a tray of fruit, cheese and crackers and I asked them which of the foods on the tray had carbs. They all agreed that the crackers and maybe the cheese had carbs, but they had no idea fruit was in that category; so we had the basics of nutrition talk.
One of the things I stressed was that their intuition was their best guide. If they think something isn’t right with the child, just check their blood sugar and find out. We talked a LOT about lows; what to look for, how to handle and what to do in an emergency.
I also stressed how important it is to CALL THE PARENTS if they don’t know what to do, or even if they need to know how many carbs are in a banana. I love getting calls from my sitter asking for clarification on something. It gives me a chance to praise her good decision making and also help them feel more comfortable about coming back for another sitting job.
I would love to know your stories around babysitting; what worries you most and what would give you more confidence about going on a date with your significant other. Having a child with diabetes can be so all consuming and we all need a break, so I am hoping a few more families living in Austin will get a chance to get out.
Photo by Tiffany Chapman http://www.freephotosbank.com/10489.html
Monday, April 23, 2007
So, before I took care of the business at hand, I exploded. All I wanted was to get a good night sleep, something which has eluded me for days and here I was at midnight, changing infusion sets, batteries, draining the last drops from a bottle of insulin AND setting my alarm for 2:00 a.m. See, I took off the Minimed REAL-time sensor last night because I was getting “trained” today on how to use the thing. I thought I would just take it off and let the battery charge, which turned into another reason for me to scream. Bad idea—I now had a 2:00 a.m. wake up call to be sure I wasn’t low (or high).
So, I screamed at my husband--really loud. I screamed at him for leaving the insulin in Dallas (yea sure, it was his fault), I screamed at him for being lucky and not to have to deal with this crap all the time, and I screamed at him for many things that had NOTHING to do with anything. I totally lost it!
For four days, at the hospital in Dallas with family, friends, kids, I was the strong one; I took care of everyone and kept things positive despite the fact that doctors were doing brain surgery. I nurtured everyone, bought lunch, talked to church members, played with the kids and smiled warmly and confidently at mom as she rested in the ICU post op. I controlled of my daughters diabetes, in spite of the fact she probably didn’t consumed anything all weekend that grew from the ground. I took care of everyone, but me.
I got angrier than I have been in many, many months—maybe even a year. But today I hugged my husband very tightly, I took a handful of vitamins, drank two glasses of my favorite tea, watched a show I really like and am going to bed no later than 10:30 p.m. I need me right now and last night was a screaming wake up call to give myself a freakin’ break!
Friday, April 20, 2007
Yesterday, I got a Cal Error about 30 minutes after my first calibration. On my second try, where my blood sugar was exactly the same as the first time (ruling out blood sugar fluctuations as the problem) I got a second Cal Error and then a Sensor Failed.
So, I ripped it off and started over. What surprised me was how soft the sensor canula was; much more flexible and thin than an infusion set. I had a small red spot at the insertion site, but it looked better within the hour.
Things are back on track, and I had eight days wear with my first sensor, so not too bad. I got some advice from Noel that inserting the sensor at 80-85 degree angle helps prolong the life. I tried it (I think), so we’ll see.
Accuracy has been good, but not as close as the Navigator. Maybe 40- 50 point spreads on occasion, but I think my Freestyle Flash runs high when I calibrate. I haven't done a comparison as I ran out of BD strips, so will do soon enough.
I have pictures to post, but I will have to do later.
Tuesday, April 17, 2007
When was the last time you did something nice for yourself?
We are all fabulous people and live with interesting and sometimes difficult circumstances, so do you ever take time to yourself—treat yourself to something special, just because you need it?
I have this beautiful Permission Granted box gifted to me by two friends that is filled with little bits of wisdom and invitations to do something nice for you. They say things like:
- Develop a collection of your own art supplies—and don’t let the kids use them
- Allow yourself to say NO!
- Visit a Farmer’s Market and treat yourself to your favorite fruit. Eat it on the front porch as soon as you get home
- Eat a dollop of cookie dough without feeling guilty (my FAV)
- Paint your toenails a vibrant color
This week, I stopped at my favorite Mediterranean grocery and bought a huge tub of tabouli, freshly made hummus and warm pita bread--right out of the oven. I LOVE tabouli, so I got in my car and made myself a huge pita filled with these amazing flavors. It was a mess! The explosion of lemon, parsley, onion and tomato is so intoxicating; It was a real treat for me.
"Self-care is not about self-indulgence, it is about self- preservation." ~ Audre Lord
Tell me, what have you done for you lately?
Sunday, April 15, 2007
I still haven’t tried the software, but it is web-based and I’m not sure how I feel about that yet. It would be nice to look at the data collected, but I just don’t have the time to figure it out right now.
We are having some interesting dialogue in the comments of my previous post. I’d love to hear more from you lurkers out there.
Buying this tool brings up lots of issues for me. It is expensive, it is cutting edge (for the moment) and I can’t afford it right now. My parents, however, can afford it and I have accepted their offer to buy this thing.
I have danced and danced around whether or not to BUY and I have had a list of excuses why I shouldn’t: the technology will be outdated in a matter of months; it just costs too much; the insurance won’t pay for it; I don't want to put this on a credit card,; what if I regret it; or what if it doesn’t live up to my expectations?
Each excuse I made in my head and with my husband seemed very valid, but I have come to realize that each excuse said the same thing, “I am not worth it.”
This shines through for a lot of women, especially around areas of self-care. Each time I ignore what my body tells me I need: more rest; a big spinach salad for lunch; a break from the computer and my work; a long walk; or ten minutes in my hammock; I am really saying to myself that I don't deserve these luxuries.
My father is thrilled when he hears I am avoiding lows and that I have only had two high warnings in four days. It feels so good to accept this without strings; this was a challenge. It took me weeks to think of this as a gift from them and not a burden to them. I am fairly pleased with myself right now and my body is thanking my every day!
Photo from www.freefoto.com
Thursday, April 12, 2007
I wish I could look back at more information stored in the CGM. You can only scroll back for several hours to get readings. The bar graph is supposed to sub for that. I haven't downloaded the software yet (One of my least favorite activities is downloading software), so I'm sure that will be where I get my good data. I love having this number all the time. I finally figured out the calibrations. See comments from my last post from Noel about specifics related to calibrations.
Curious if any other Minimed wearers are interested in having this thing. My greatest challenge is NOT pushing my daughter to get one. We are ready to order at any second, but I want this to be her decision. Just imagine the joy of going to bed and knowing an alarm will sound if she drops or goes high. The joy of sending her off to school or one of the random day summer camps we send her to, knowing all she has to do is look at her pump to know where she stands.
This is a worry eliminator.
Really wish the CGM had the smarts of the Navigator in terms of alarms. They have the best thing since canned beer with an alarm that warned you 30 minutes before a low or high. THAT, my friends, is cool and it worked 97 percent of the time. Once, I got a warning of an impending hypo and my sugar was at 125. I thought, I'll take care of that after I drop off the kids. How fast could it be falling. Well within 30 minutes I was at 60, five minutes later I was in the 50s, five minutes later, and after a juice, I was in the 40s. IF I had headed the warning, I would have drank a juice, yes at 125, and watched as I dipped to the 80s and then slide back comfortably into the 100s. This happened many times. I loved that, so Minimed, this is the goal for the model next year.
Let me hear from you. I know money is the biggest obstacle to getting this thing, but would you want it? What do you think about the technology. Does the idea of this kind of technology, perhaps even having a closed loop system, make having diabetes more bearable? I am ashamed that the CGMs and pumps costs so much; that this technology is so inaccessible to so many people. I am very fortunate. Very fortunate indeed.
photo from www.freefoto.com by Ian Britton
Wednesday, April 11, 2007
So far it is comfortable and reading steadily. One thing that surprised me is that when you use the Bolus Wizard, your blood sugar doesn’t automatically pop up; you have to enter it manually, which seems kind of silly. I guess they want me to check my blood sugar manually before taking any kind of action.
I keep my pump in the side of my underwear, under my clothes (obviously). I had my pump on my left side and at one point, while waiting for anumber to show up, I lost the signal from the transmitter. I think that is werid. Two feet away under some jeans and the signal couldn’t get through? The navigator read while I was down and it was upstairs inside the dirty clothes basket.
I moved the pump over to the right side and it seems to be ok.
Friday, April 6, 2007
I read the directions last night and I am pretty sure I can figure this thing out fine. I do have one small issue before I move forward. I was using the clear version of the 712 and I said, "Hey, let's try something new!" So, I ordered the "smoke" colored pump and now that I’ve seen it, I really, really dislike it. It looks so medical and pager like. I called right away and they are going to overnight me a clear one on Monday. You know, if I am going to look at this thing 30,000 times for the next four years, I have to like it. So, it is worth the wait for me. Fashion first!
Some thing I’d like to note Comparing the Real-time and the Freestyle Navigator:
Alarms: Navigator gave warning alarms for impending lows or highs, the Real-time only warns WHEN you hit a self-prescribed low or high. So, I may set my warnings closer to normal, so I can use the trend arrows to determine if I am headed Far North or South.
Navigator was more complicated to snooze, and had no variation in times for snoozing. This was especially irritating with high blood sugars. The Real-time has a default one hour snooze on high blood sugars and a 20 minute snooze on lows, which can also be customized to meet your needs. I love that.
Arrows: Navigator had northeast and southeast arrows, Real-time has a single arrow north or single arrow south, which I guess says the same thing. We’ll see when I get it on.
Transmitter: Real-time Minilink ~ Rockin’ Roll small! Rechargeable battery that lasts 14 days or more! It feels nice; like a smooth river rock or shell. Interesting how shape and feel can influence your feeling about something. It doesn’t feel medical; it almost feels like an accessory. Someone in marketing was thinking on this one and I, as a marketing guru, appreciate this. Navigator was large in comparison and very device-like. I am certain they will make this smaller and hopefully sexier.
Sensor: Can say too much because I am only looking at it, but the Navigator had disposable inserters and you didn’t see what was being plunged into you. The end result was a tiny; an itty bitty (VERY itty bitty) tube attached to a micro-chip going 5 mm under the skin. The Minimed Real-time is pretty cool looking with clear plastic and it is small on the surface, but the needle looks really long and think. The tube looks really long, but is inserted at a 45 degree angle. I like the reusable inserter, isn’t particularly loud, but we’ll see more when in use. I definitely like less waste associate with this system.
Reporting: Navigator had a wide variety of on-board reporting; 2, 4, 12 and 24 (I think this combo) hour line graphs and statistics (which I found useless). It appears, although I haven’t delved further, that you have instant access to a 3 hour and a 24 hour line graph on the pump for the Real-time. I thought a lot about this and it makes sense to me. This allows you to see immediate trends post meal, post high or low, etc. I was hoping to see a 12 hour, but really, I think the 24 hour will be fine, again, for spotting trends over the course of days.
Software: It appears there is a web-based program when you can upload your real-time info. I haven’t explored this further, but I have to say that I really liked the Navigator Co-pilot software’s visual and data based reporting systems. It also appears that the Real-time has similar data and charts available, but there were some nuances in the Co-Pilot that I really liked, so I am anxious to compare.
Look, if you are wearing a pump already I think this thing is amazing. Not having to carry two units around is a blessing for me fashion wise and also the pump is attached to me, which means I won’t loose it. If you are on MDI, the Navigator will rock your world when it comes out. Although I know Minimed has a separate CGM as well, I can’t say anything about it because I have never looked at it.
It is 40 degrees and raining in Austin this morning and this is coming off of multiple days hitting almost 90 degrees. Hope the Easter bunny can hide his eggs in the backyard tomorrow! Oh! I asked my husband for help with Easter bunny items this year and he bought lots of empty eggs and got a roll Sacagawea dollars and half-dollar coins instead of so much candy for our little T1 girl. He also hit the dollar store for silly little things, but we are mixing this with chocolate eggs and gum (couldn’t find sugar free gum eggs, too bad—8 carbs each). We quit buying sugar free chocolates etc, because they give you a stomach ache and are only a few carbs less than real chocolate. Any other creative ideas around this holiday are appreciated.
Photo by Ian Britton--(c) www.freefoto.com
Tuesday, April 3, 2007
The PRG for moms living with type one will meet once a month for six months and utilize the month-by-month themes and exercises in the book. Need a little support for your own self-care, check out a sample chapter titled, “Managing Your Energy: Setting Priorities, Saying NO and Asking for Help.” Good stuff in there; one of my favorite chapters. Also, I wrote a vignette at the back of that chapter (15 minutes of fame)!
Topics covered in the groups include:
· The Transformative Power of Self Care (on a physical, mental and emotional level)
· Good is Good Enough: A Mother’s Mantra
· Creating Your Personal Support System (much need for moms with kiddo's with type one)
· Life Balance: Insights and Strategies for Balanced Living with T1 Diabetes
Well, I am still waiting on my Minimed Real-Time Transmitter and pump upgrade. I really don’t like ordering something so important with a fill in the blank order form on the Internet. At least when you talk with someone, you know they got the order and there is a person accountable for processing it. Have made calls, but can’t quite figure out where we are in the process. I know my Dr. sent the script and paperwork.
I asked the doctor to note my hypoglycemia unawareness on the prescription, as this is my main reason for getting the pump. I am going to file a claim with insurance after I have the thing in my hands.