Happy (belated) Birthday to Tucker!

Betsey's only brother turned 8 on February 20th!

Shockingly handsome isn't it?

Life's Curve Balls....(public pep talk)

Every once in a while I have to step back and thank God, literally, for what I have and who I have in my life.

I have a supportive, caring, deeply committed -albeit flirty- husband in Speedo (coming up on 14 years-holy wow!), 6 beautiful, witty and charismatic children, an army of friends that graciously pick me up emotionally as needed, listen to me, respect and trust me, laugh with me and cry with me, and I, likewise, offer them the same. I often wonder at how I got where I am.

My children, those that are old enough to understand, know "the story" - or part of it anyway - and know that choices I made were not good ones. I use my story as an example of what NOT to do! :)

I became an emancipated minor when I was almost 17 -basically divorced my parents, and for not a reason I care to share, because, hind sight, oy vey-it really was a dumb reason that pushed me to that point. I brought them to court, stood before the judge and convinced him I was capable of being an emancipated minor. He bought it, hook, line and sinker, and granted me the freedom I so desperately wanted back then.

I lived in many places during those times; other people's rentals until they kicked me out because I wasn't contributing to their rent, friends houses until their moms said I should just go home, backs of cars, hotels with random people I met. I showered wherever I could if I wasn't sleeping in a place where a shower was an option. Often times I "bathed" in a nearby lake.

I worked 2 jobs to support myself back then, and used what money I made to "get by" and by "getting by" I mean a handful of devil dogs for the day, a couple packs of smokes and someones willingness to drive me from point A to point B and not want gas money. I made ends meet, and it worked for me.

These are all choices I made, all choices I lived with and I was happy enough to come and go as I pleased. I wasn't really going anywhere...I was living day to day, hour to hour, "having fun." I was happy enough doing what I was doing. Life was about making it to the next day.

The summer I was 18 was when I found out I was pregnant. I was tubing on the Connecticut River late one warm summer day.

This changed my life forever. Just 18 years old. Pregnant. No real place to call "home." Talk about a dilemma!

There are many pieces to the story of what happened to me from the time I ran away from home at 16 until the day Hayley turned 6 months old, and many more, much happier times after that milestone. I had an interesting spell of years during that time, a time I wouldn't change for the world because it made me the woman I am today, the mother that I am, the friend that I have become. Those years shaped me in ways I am still discovering to this day. I share bits and pieces as the time seems fit, and with only a select few I am close enough to trust with my deepest secrets. Those I know won't judge, won't ask too many questions and just listen as I share.

I chose to turn my life around when Hayley was born. I chose to grow up prematurely and be the mom I always thought I should be the day I would be so lucky to have children. I chose to drag my a$$ out of the gutter and make something for this beautiful little person who looked at me and only knew love. Speedo always right by my side, offering his hand and gentle help.

Oh those times were tough alright. I cried many nights wondering how the hell I was ever going to be able to make it as a mom. It wasn't about me anymore, I had a little human being depending on me and needing me.

Life throws curve balls all the time. It's what you choose to do with them that counts.

Where am I going with this??

I'm pep-talking myself.

Remember Meghan? You can do this! You overcame one other obstacle, a big one...you can overcome this one....It's how you choose to deal with this diabetes dilemma....

Betsey's diabetes diagnosis was a curve ball. We're still swinging at it, sometimes making contact, sometimes striking out. But we always get another chance. Right now, it is a series of curve balls, and we're not walking any bases--we are striking out every time! I know it'll work itself out one of these days... I know it. But I'm finding myself frustrated, at a loss, and like I'm constantly talking to a brick wall.

Just a curve ball. Life. We're going to get through this one....

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!

Dear Patience Fairy....

Please sprinkle some patience dust down on me as I am struggling to find it these days... I think I'm running on fumes. I need it for those times when my broken-record voice goes unanswered, and my quiet & gentle reminders aren't so quiet and gentle. I like to have a reserve of the patience dust for the mornings when I know a ketone induced trip to the bathroom -like this morning- that could have been avoided happens. I need extra for the times when an "I told you so" is only going to hurt feelings and not be heard anyway.... I need it for my own piece of mind... I have to fill my patience tank to be able to handle this next phase we seem to be entering .. as a mother of a teenage diabetic girl.

PS-The faster you can sprinkle... the better.

One Tough Month

Swine flu has hit CT and we were inundated with it for the past few weeks! Since Speedo and I got back from our delicious trip to Florida, one child after another, sometimes 2 overlapping at a time, have had the Piggy Flu. We had not gotten the vaccine for them (and I hadn't decided whether or not I would....) because I was incorrectly told that because they all had just received their seasonal flu shot, they had to wait 28 days until they got the H1N1 vaccine. This only pertains to the live nasal spray vaccine for seasonal flu - because it is a "live vaccine."

In any event, we aren't getting it now, because we have had our run of on-and-off-again high fevers, a sore throat that radiates to the muscles on the outside of the throat making it nearly impossible to cough without cringing in writhing pain, weird crazy body aches, and a residual cough that lingers (for up to 3 weeks they say!) and sounds like you have a crew of smokers on your hands!

Speedo and I came down with it within 24 hours of each other, just as we were high fiving as all the children were given the OK to go back to school and no one would be home... life would resume.

Shouldn't have high-fived it.

I came down with a fever within 3 hours, Speedo the next night, same thing.

He and I both ended up in "cozies" for about 4 days, on and off the couch, watching oodles of TV (have you seen the stuff on TV during the day?! WHO watches that cr@p??!) and downing Advil to ward off the random aches that came with it.

It wasn't terrible. On and off fever, a dry hacking cough which eventually turns soupy, a couple aches and pains.... We were pretty tired though. I'd take it over the tummy bug any day though!

It certainly didn't inhibit the appetite, which makes me wonder the real reason it was dubbed swine flu? Day 3 of it, Speedo shuffled his slippered feet into the kitchen and noticed some maple syrup in the pantry and suggested since we have French bread, why not have French Bread French toast - at 11 o'clock in the morning?

Who does that?

So we ate French Bread French Toast and watched some ridiculous talk show about cousins marrying cousins and why they think it's OK. What??

Unfortunately we missed the last 2 weeks of our Ballroom Dancing; one week because of sick little Piggies, and the last because we were the Piggies. I think we're considering private lessons from Laurent (lauRRR-awnt) as he was pretty good, and we picked it up quickly, and... I really, really liked it.

Our puppy Tookie is the only one who escaped Swine Flu and was well, thanks to Dr. Gogo's A+ check up, just in time to celebrate her 1st Birthday! We had party hats and a floppy cake to celebrate her on a year of surviving little people!

Betsey did have it as I somewhat suspected. She fared well, no problems, considering she was in the "high risk" category.

Betsey is rebelling more and more with her diabetes.... making me consider her "high risk" on a whole 'nother level. She's starting to test less as I've given her a little wiggle room with me and reporting back to me during the day. I've let some things go, and come down harder on others. I know it falls on deaf ears when I remind her of the importance of testing before certain activities, and before bed, (this one drives me CrAzY!) and making sure she has what she needs on her way out the door for school or what have you. I am getting used to the eye roll, the trying-to-conceal-sigh, the foot tap.... well, not used to, but its all expected.

It doesn't matter how many times I remind her to do certain things, because right now she is feeling out what she can get away with -with her body- and how far she can go.... Tough to watch I tell ya.

The other day I looked through her meter to get a handle on her numbers throughout the day... One day, she had tested a total of THREE times!! That's it! Normally, it's an average of 10!!!

So yesterday she had to stay after school to make up a math test that she missed when she was out with the flu. This year she is in an advanced math class and it's good for her. It's challenging her and she's working at it. It makes it more fun for her believe it or not.

She asked to walk with her friends when she was done, and if I could pick her up at 3:30. Not a problem. I show up to pick her up where she was supposed to be, her friends are there but said she never showed because of some math test.

Ugh. I hustle over to the school, stop in the office, have them call to the classroom she is supposed to be in. By this time it's about 3:40, well past time for an afternoon snack for her, and I never heard from her for a blood sugar before the test, after school. Nothing. I didn't really think she would, but I hoped. Because I reminded her. Again.

Yes, she was still in the classroom, still taking the test.... I went to the classroom and Betsey had just tested an handed in what was finished on the test... She was 62!

I knew it!

I looked at her teacher to let her know I was a little bit concerned...

"You know that is going to affect her score, right?"

"Well she hasn't finished yet so..."

The teacher said she could finish the test during a free period the next day or whenever, but I was concerned about the length of time it took Betsey to do the test - almost a full hour! The test was given during regular class time.

This conversation lasted less than 2 minutes, Betsey was packed up and ready to go.

She bolted out of the classroom and started crying as soon as we turned the corner.

"I think I just totally failed it!"

I asked her to stop, what was the problem, how long was she low for....what was going on???

So unlike her.

Turns out, she was low probably 10-15 minutes after school, didn't test though. According to the principal, the teacher thought she looked low at the onset of the test and asked if if she should test. Betsey said No.

Betsey said she didn't even know what was on the test...didn't know how to explain to me what was on it... It was hard. Stuff they must have learned when she was out. She was almost mumbling her words. She didn't feel low, though.

I told her that just because she doesn't have the typical symptoms she normally gets, doesn't mean that feeling she's got isn't a low...and that she should stop and test. Like in the water. Betsey doesn't feel a low when she's swimming. That's the danger. She just keeps on going, not feeling the physical effects of the insulin side effect. Not until she gets out and stand up does the weight of her body help enable her to acknowledge the problem. So while she sat in the chair, concentrating so hard on the test, trying to finish in a relatively good time so she could get out and socialize with her friends before I picked her up, she pushed the symptoms she was having aside.

The frustration. The eyes not focusing. The hunger pain. The annoyance of everything including the chair she sat in.

All signs pointing to a low blood sugar.

Ohhh Betsey.

I didn't want to bombard her right there... she was feeling low as it was and nothing sounds good to her ears unless I'm discussing ice cream, brownies, desserts... and even then, she just wants me and anyone else to shut up until she feels better.

Last night we discussed the test. She realized she was low, too low to concentrate, and that is why she did not feel she did well an it took so long.

I didn't delve into why she hadn't stopped to test, or why she didn't test in the first place. If I had asked her to lecture me what I would have said to her, she would have done so verbatim what I would have said.

She knows. She's heard it all before.

I don't know if she was making the test up today during a free period or not.

It's one thing if she doesn't know the material and bombs it the 2nd time, but it's an entirely different story if she bombs it because her blood sugar is off.

....Results to come....

Not-Forgotten Blog

I haven't forgotten... just have been caught up with busy times in our house; end of season sports, swine flu (all 8 of us) and school stuff with the chidlren.

I hope to write again soon.... Thanks for checking in.