Clinic: Happy Tid Bits

We visited Yale last week for Betsey's 1st check up in 2010! It was one of the better visits - for both of us. Her A1c is 6.7 which is really great, again, and I'm happy about it. It is up from last time, but under that magical number of "7" that they like to keep it. It's a lot of work to keep that number down, I tell ya. It's lots of nagging, lots of adjusting and constant management. It's doable. It's a lot, but doable.

We met with a doctor who, incidentally, is a type 1 diabetic herself and Betsey admitted to me after, she liked that a lot. Betsey, she-of-little-words-in-public-but-the-loudest-at-home didn't say much during the visit (shocker) but she listened, watched and felt a connection. I could tell she was comfortable because she didn't hesitate as she normally would when asked to show her site areas which requires her to drop her drawers. But because Dr. Jen stood and motioned to areas on her own self where she wears sensors and sites, Bets kind of relaxed her shoulders. A silent sigh of relief sort of.

Again, I always leave clinic with a new Tid Bit of information. When I leave with more than 1 Tid Bit, it makes me a happy mom-of-a-diabetic-daughter. No pat-pat, but I do a pretty good job of regulating Betsey. I am on it. Too on it sometimes, I know. And I feel like I know what I'm doing. I like that. I think there are certain things you do in life and you have to have the confidence in order to do them well. I read oodles when Betsey was diagnosed, listened often, googled lots, asked many many questions, probably to the point of being annoying. On the ride to the hospital when she was diagnosed, I called my sister in law's (Lactaid) father who is an endocrynologist and with pad and pen in hand, took notes as her gave me the diabetes 101 so I knew what to ask in the ER, what to look for, what to do....

I wanted to be armed with what I needed to know. And I have so much more to learn.

Obviously. I love being put in my place. Honest. It's humbling.

Betsey was having a low kind of day that day-- dropping low constantly, despite eating the normal foods, no excessive exercise the day before, nothing of note to indicate possible low blood sugars. In the course of the morning, she had dropped low 5x, and was never over 110. Several blood sugar checks in the office in front of the DR.

Dr. Jen mentioned the benefits of temporary rate settings on the pump and asked if we utilized that feature on the pump; which we do. Often. Its' one of the features we find to be key in managing blood sugar levels during the day. And she suggested a temp rate b/c sometimes those lows just keep on comin' and you need a temp rate.

Whenever I've been in clinic with Betsey, and I have to suggest her to test, do something with the pump, anything that is diabetes related, I feel eyes watching me. Not judging, but watching. Kind of like a mentor witnessing a student delivering information that has been passed on to them.

When I think a temporary rate is needed, I do a very quick "equation" in my head-- I consider any meals she has eaten that day, any activities coming in the next hours, foods that will or will not be eaten, blood sugar patterns during that same time on previous days... and from all those gathered bits of info, I make a decision about what the temp rate should be. I told Bets the temp rate to put on (the % of her basal to cut) and then the duration to enter. Almost in the same breath, Dr. Jen, a diabetic herself with the same pump and knows about a low blood sugar day, offers her suggestion to me with a great explanation as to why, and what she knows and has seen and dealt with, not only with herself but all the diabetics in the practice etc etc etc. The look I gave her must have caused her a moment of "oops, did I overstep?" I smiled so big. I felt so good at that moment. I love constructive criticism and learning. And I wouldn't even call her explanation constructive criticism, but rather just an educated, experienced explanation and re-direction. I was so excited. Tid Bit #1. A new understanding of temporary rates.

We did some basal adjustments which I try and manage on my own going over info on Betsey's pump from her sensor as well as the numbers we log daily. But an experienced professional sees the things I don't see or know to look at and makes adjustments with some crazy mathematical equation based on total daily dose of insulin and the insulin given for correction vs for food, etc. It's fascinating. It's like one big science experiment. Tid Bit #2.

When "any more questions?" was asked I brought up the swimming issue. 2 of Betsey's siblings have started swim lessons and Betsey would also like to participate, but I have this dilemma with the swim thing and Betsey. The water, the swimming... whatever it is, it makes her sugar plummet. Just last week we went to the pool after lunch to swim as a family and she had forgotten to bolus for her lunch. Checking her sugar before the swim, she was 350+! Normally we'd correct that, but since she would be swimming, I knew better and to leave it. I had Betsey climb out and test an hour later-125ish. BIG drop. Knowing we'd be leaving shortly there after, I let her hop back in, but within 20 minutes, she climbed out on her own saying she thought she was low. She was 37!!!!! I hadn't brought snack in with us and the juice wasn't going to cut it so I ran out to the car to get some food, and she needed it!!

Upon discussing this with the DR, she confirmed it's a given and that it happens with her also. She gave us some great tips for swimming as a diabetic.......what numbers need to be treated, how often to check blood sugars, foods to eat and treat with, and the amounts of fast acting carbs, proteins, etc to eat with any given number range.

Ahhhhhh. Swimming stresses me out with Betsey. It's always an issue. Now I have a better idea of how to help stabilize sugars for a good uninterrupted family swim, and maybe even lessons! Tid Bit #3.

We bumped into Amy T. who is in charge of the clinical studies and informed us that the study Betsey will participate in just got FDA approval and she's 4th on the list. They're hoping to double up kids in the hospital for the stay in which case she may go in earlier than expected. She is still willing to participate and I am excited about the idea of it. Tid Bit #4.

Happy Tid Bits are always a good thing!

Diabetes Thoughts

When Betsey was first diagnosed with diabetes, that day, I remember so much of my feelings, the emotion, the clothing I was wearing... It's almost a still picture in my mind. A bunch of stills. And they move slowly through the frames in my head. One after the other. When I sit and think about that day, and the days that followed, I relive the same thing over and over in my head, going through the stills, frame by frame, often shedding a tear or 2 and getting choked up. Seldom do I revisit that time in its entirety. It still, almost 5 years later, is a lot for me to take in all at once.

I read and re-read Betsey's diagnosis story that I wrote as my first post on this blog. It still makes me cry. I know this kid. I know the story. I lived the story. I am living it. With her. And it still brings back raw emotion.

Is it the weight of the emotion from that time; the month of the diagnosis? Is it the reality of the larger picture? Is it the sadness I feel for her and all the things that could happen to her innocent young body? Is it just the idea of it.... diabetes?

Diabetes was something I, like many other people, thought was all about sugar,. You either ate too much of it and your body decided to rebel and get after you, or you just couldn't have it. That was about the extent of what I knew. I don't even know if I had spoken the word "insulin" out loud in my vocabulary once in my life prior to that. Why would I have? It wasn't part of my life. Insulin didn't sit in my fridge or on my counter. Insulin wasn't delivered to my house in a refrigerated styrofoam box from a medical supply company. Insulin wasn't a smell I was familiar with. And now, the smell of it lingers in our house, mentally and physically. Often times I can smell it on Betsey. Is it physcological? Or is it my super-sniffer as Speedo calls it?

When I read that post about Betsey's diagnosis, I think of how ignorant and uneducated I was at the beginning. And how little I knew and thought about her future. It was all then and now. Even today, I don't like to, scratch that, won't allow myself to think too far ahead. College. Can't and won't. I have to live in the now with her and diabetes. It overwhelms me. It saddens me more than I can tell you to think of her growing up with this nonsense.

Did you know that insulin is not a cure? It's a lifeline.

Did you know that people with type 1 are at greater risk for eye problems, like glaucama & cataracts.

Did you know that most people with type 1 will get retinopathy, a disorder of the retina?

Did you know that type 1 diabetics are likely to have foot problems, like neuropathy, which can and will lead to amputation?

Did you know for type 1 diabetics it is almost a death sentence to not have tight control, because prolonged high blood sugar causes damage to nerves and blood vessels faster than normal.

Did you know that type 1 diabetics are at a much greater risk for heart attack and stroke?

Did you know this information is stuff I try not to read or write or think about?

Uh oh!

News and dates for the VT JDRF ride have been announced via email to our crew of riders from last year.

Not great.

July 15-18 in Burlington VT. Sounds great, but some of the people that rode last year have their big Half Ironman in Providence the weekend before and there is no way they''ll be up for 100 miles the following weekend. After my half last year, I was out for a while trying to get a feel for my legs!!

Ugh.

I may ride solo or with another chapter. I have to get my schedule in place for my races this year and figure it out....

Kind of a bummer. :(

JDRF Ride 2010

It's January and a new set of training plans are tentatively in place for the upcoming years' event calendar for me! I received word from my friend Steve that the JDRF VT ride this year will most likely be in July, not August, and perhaps at a different location than last years. My children are so excited at the idea of going to VT again - that trip brings back such fond memories for them and myself alike.

As I look forward to this year, I have decisions to make about what events I'm going to be partaking in. I have to figure out which distance races are going to influence my training plans. I have settled on a marathon for sure!! Jen and I have committed to that and very much look forward to adding that to our list of accomplishments!

Amy has officially signed up for an Ironman, a FULL Ironman!! Her training has begun as of this week and all of her races this year will focus around prepping for that event. That is a 2 mile swim, a 112 mile bike and a marathon to finish! Unbelievable! I was concerned about the date of her event falling on the same weekend as my JDRF Ride for Betsey, but with the change to the ride being in July, looks like I'll be able to fly down to Kentucky and cheer her on and watch her cross that finish line! I can NOT wait for that!

As far as the JDRF ride goes, the fundraising is always a concern for me and I hope to look into a new way of raising the mandatory amount of $3000 to ride. I simply won't ask the same people who so generously donated to me last year -- did I mention that my total amount raised was $1000+ over my goal and I received a black Nike JDRF jacket to boot?!!

And this update wouldn't be complete without a word about Betsey, the reason this whole blog started. She's doing well. She recovered quickly from the swine flu that we all had a while back. I was so thankful it didn't react adversely with her and cause us any problems. I think Speedo had the worst go of it. Men when they are sick!

Betsey's schoolwork is continuing to shine; she enjoys the challenges her classes offer. She is still "forgetting" to test and/or bolus often while at school. The lunch time call with her blood sugar is often the first one I get for the day and it's usually high because she didn't test for snack or bolus for whatever she ate. Then she over-boluses for her lunch to compensate and ends up low later.

The eye rolling and heavy sighing from her is a given at any point of me mentioning proper care, and just recently, she's started more seriously protesting site change and sensor wearing. Obviously I have to put my foot down about the site change-- the sensor isn't mandatory, but it sure helps with nighttime readings and makes ME feel better.

I get a lot of, "In a minute..." or "Later..." when suggesting it's a good time to change it. Half the time she does it on her own, without any help from me, and half the time she wants me to do it. She admitted she wants me to have more influence with regard to "nagging" her about when to test, to change her site, reminders about good food choices - and even though she continues to argue with me when I do nag, she told me it's just too much for her sometimes. She'd rather have that load on me.

And that's fine.

If I could take it all I would.

We have clinic in a couple weeks. Her favorite visit! ;) Once again, I get butterflies thinking about it and wonder what that A1c will be with such loosey goosey control. We're still waiting on word about the Clinical Trial - no news yet.....

HAPPY NEW YEAR!