Car -- In The Garage

Really- Almost 2 years?

2010-01-04T12:31:00.006-05:00

How can that even be possible. I can show you...

First it was about 4 months of "I am so sick I can barely get off the couch" Followed by seemingly thousands of parking validation stickers going in and out of the Joslin Clinic at BI. An a**load of test strips, an amazingly supportive husband and the new love of my life.

About 4 hours after that photo was taken, my water broke and we were off to the hospital. I was having a scheduled c-section because of the location of some retanopothy (I never can spell that). At first I was a little upset that diabetes was going to dictate how my child was born. But I quickly got over that when I remembered how lucky I was that I was able to have a child in the first place.

My daughter decided that she didn't want to wait till Monday morning, she was coming Sunday night. So about 16 hours short of my scheduled c-section, she was born. On the way to the hospital my blood sugar dropped from a steady 140 to 55 in a matter of minutes. We got to the hospital and about 4 hours later, a nice doctor- who kinda looked like Prince- delivered my precious Lucy Clara. I have never been so proud, and so humbled, than the moment she was born. No problems, no blood sugar issues, just pure perfection. (and the coolest dark hair with frosted blond tips)

In the blink of an eye, and a lot of sleepless nights she has grown into a funny toddler who has an affinity for big bird.

And what brought me back to the land of the blogging? The terrifying and thrilling idea that we are going to try and do it all over again. My A1c needs to come down a solid point, and nothing seems to be going my way diabetes wise. So I am back to what worked last time. Time, patience, and support from other people who can understand how I am disappointed that my diabetes is going to, yet again, take control of my life and upcoming (hopeful) pregnancy - yet resilient enough to do it all again. Because in the end, the snuggle of my "sweet goose" tells me that it was all worth it. Every appointment, every test, every worry.

I hope to blog and keep track of this pregnancy the way I intended to the last time. For now, I am waiting for a pre-pregnancy appointment so we can come up with a plan on how to get this baby here. Lucy needs a playmate.

The dorkiest thing I’ve ever done…

2007-06-12T14:12:00.000-04:00

That’s saying a lot for those of you who know me in real life.

I am going to be on TV. Lifetime Television, to be exact. I was recently interviewed about having diabetes and growing up with it and all that jazz. It is part of a program that Walgreens is doing in combination with Joslin. So my doc called me to see if I’d be interviewed. Interviewed, no problem. You can probably tell that I really enjoy talking about diabetes and sharing what I’ve learned about living with it to anyone that will listen. You can interview me all you want…… taking film of me eating an apple and walking down the street in Boston chatting with my doctor – not really sure I was ready for that much cheesy stuff! I feel like it’s a bad reenactment of Anchorman.

If they wanted to show a clip of ‘you can live a normal healthy happy life’ they should have gotten shots of me and my hubby enjoying some raw oysters and a glass of wine or rocking out to a so-so cover band with my girlfriends. I’ll have to let you know when it’s on, so any one that wants to ‘see’ me, you can tune in…

In uber exciting news, I got my A1c back. I have never been lower. Rock. And. Roll. They wanted me under 6.5 and I clocked in at 6.3. I was more surprised than anyone else. The problem is that now I am getting a little obsessive about my control. Sometimes I feel like my body ‘plays along’ and makes it’s easy… you know those moments... ‘hum, I feel high, or maybe I am just thirsty’ … check your sugar and you ring in at a happy 109. ‘Diet coke, please’ I seem to be having less of those lately. A few more of ‘ what in the hell is going on.’ Ah, such is the up and down of diabetes. I see my TV star of a Dr in a few weeks and will have it checked again.

That’s about it… the party for my husband went really well, despite the down pour of rain. And in a few short weeks we are going to CA. Woo Hoo, then you know what time it is…. time for a new answer to the question “when are you going to try and have kids.” Thoughts on that, later…

It’s a new dawn, it’s a new day… and I’m feeling good!

2007-05-10T15:07:00.000-04:00

The eyes thing, is indeed a bummer. But, it is what it is, right? I will watch it, and go back to the eye specialist when she told me too, and trust her. (That was great advice, thanks, Minnesota nice) She is the specialist for a reason. And I have to have faith and remember that it’s a delicate line between super tight control and actually living a fulfilling life. I’m not saying they are mutually exclusive, just a balancing act- like everything else in diabetes. And even with super control, sometimes your body just does what it wants!

I have changes in my eyes, and they are caused by diabetes, but I still love my life. And I know, that with good technology (I am blessed to be so close to world class care in Boston) and lots of support and love by family and friends (in life and on-line) I am going to continue to do my best to exude happiness and health.

The super fabulous news is that I got my A1c back and managed to lower it .6 in 2 months and am well under the ‘goal’ for getting the baby show on the road. My husband couldn’t believe it when I called him. This is exactly where I hoped to be, able to make a decision on starting a family, having put all the diabetes stuff in order so that we can make the decision like average people. After our vacation in July (we are going to Napa and you’re crazy if you think I want to be pregnant and not be able to drink the wine. I do have priorities! ;) ) we’ll see what lies in store ...

For now, I have 85 people coming to my house next Saturday for a party for the love of my life, a trip to see my brother in TN, 5 weddings that I am the florist for, and a lot of fun and games to attend too this summer. I’ll sport my sunglasses and check my blood sugar frequently, and keep on keepin’ on.

I am back on track, striving to be my favorite toy from my childhood - a weeble wobble. Diabetes can try and knock me out, but remember “weebles wobble, but they don’t fall down”

“Oh my friends have had lasiks” and other ramblings

2007-05-09T15:17:00.000-04:00

It always ceases to amaze me how quickly time goes by when you’re not really paying attention.

My husband turned 30 two weeks ago. As a celebration on the actual day, I send a hot pink singing gorilla to his office to sing happy birthday in front of a room full of people. I had no idea it was going to be pink. It was super fabulous, I wish I could have been there.

I volunteered at my camp for a tremendous weekend for grandparents and caregivers. I had the pleasure of helping a family with a little girl with diabetes. It was both of her grand parents, two aunts and one uncle, and a little brother. The little brother happily played with his power rangers action figures as I helped the family learn what to do with the little girls diabetes, so she could come and visit for a sleep over. The camper was a trouper as each of her family members learned how to check her blood sugar, and give the appropriate dosage of insulin. I received saline shots in both arms as ‘practice.’ It was one of the best weekends I’ve had in a while. Despite only getting a few hours of sleep each night, it was a total blast and reminded me how important camp is to my life. I so enjoy talking with families who are newer to diabetes, to let them know that with a little hard work, everything is going to be just fine. And personally, camp keeps me centered. It reminds me that while I may be going in 1,000 directions everyday, to remember that without my good health, nothing else matters.

I was riding high from my weekend when I went to see the nice folks at the pregnancy clinic and have my annual eye exam. I call my eye exam my ‘runner stamp’ exam because I make the same jokes every year, and always get a “looks good, no changes, and see you in a year.” I was all geared up for “doctor-a-poloza 2007” The day started just fine with an appointment with an endo. She was great and told me the things I needed to do to get this baby show on the road. Nothing that I hadn’t already thought or heard. I had an hour between her and the dietitian, so I went to the lab to get my a1c drawn. It is well documented that I hate the lab, but with that A1c number being so important for the baby machine, I was actually ok.

I went into the closet sized lab that they had in the doctor’s office. Sat down, told the nurse of my propensity to pass out, reclined and was thinking of what I should get for lunch (something fatty and yummy before the nutrition talk, or go with the safe salad and be able to say ‘yes, yes, I do eat my vegetables”) I wont bore you with the details but 4 butterfly needles, a “what have you eaten all day” and a few sweat beads on my brow later, I left the lab. It will indeed be a long 9 months if that’s the way it is going to go.

I decided to go with the salad, and then went to see the coolest nutritionist I’d ever seen. Very down to earth. I got some great tips and felt like I was ready to take on the world. I called my bestest friend (who happens to be type 1 and planning a baby too) We chatted and then I went for my eye appointment. I should have known that after the lab debacle, I may not be getting that rubber stamp after all. I didn’t.

I was tested for some narrow tunnel eye issue that the first doctor didn’t explain very well, but it involved some lense scope thing on my eye and a lot of “look at the light please” It was indeed uncomfortable, but apparently whatever they were testing for was ok. I waited for the dilation drops to work and then waited for the “real doctor” I kept checking for my husband/driver in the waiting room. The retinal specialist came in, and took out her lights. That woman knows how to shine, that’s for sure. My favorite is when they take the light and get the magnifying glass out, as if the regular light wasn’t enough. UGHGH. Then the words that turned my stomach. Retinopathy. In both eyes.

“Let’s take some pictures” she says. Wait in the lounge and they’ll come get you, then we will review them together.

I checked for Ryan again. As the tears welled up, he wasn’t there.

I had the photos taken. Yowzers. Talk about flash.

One last check for Ryan in the waiting room, and thankfully, through the blurred vision and spots from the flash, I saw that unmistakable silhouette. He knew something was wrong as I made him come in with me. I don’t need laser yet, but will likely need it soon. That has an 80% chance of fixing the problem. It won’t prevent me from carrying a baby. But there it was, in orange and red on the screen. Proof of my 25 years of diabetes.

I felt like a failure. I thought I was going to be the one to escape the nasty wrath of this disease. I went home and had a pitty party for myself and refused to talk about it.

A few days later, I came to grips with it all and know that I will be just fine. I dusted my self off and just kept going (not like I had any choice.) I did go ahead and tell my mom. And she, in all her attempts, said “oh I know friends that have had lasik surgery, it’s fine” totally and utterly missing the point … completely.

Information Chill Pill

2007-04-12T13:43:00.000-04:00

I remember the day. The alumni at Clara Barton Camp were all gathered around the lake, laughter and happiness oozed out of the group as long time friends were reunited. It was alumni day and as a part of the alumni committee, I knew we would be honoring Dr. Younger that day. Dr. Younger was a pioneer in assisting women with type one diabetes to have healthy babies. As the little ceremony began, I ventured down to the waterfront to hear what these women would say, but I was more concerned on how the kitchen was doing with lunch and would we stay on schedule. I had a boyfriend at the time, who we refer to as ‘the artist’ and while deep down I knew he wasn’t ‘the one’ I 100% knew that I wanted children some day.

In front of me were some people that had a much larger impact on my life than they will probably know. They were the counselors and leaders of camp when I was just a child. As I grew up and learned how to be a teenager with diabetes, I watched them become women with diabetes. It was their style and grace that made me so confident that I would end up where I am. A healthy adult woman, loving my life. Although, style and grace may be romanticizing it a bit- the first one that came back to camp and told us that she was pregnant was serenaded by a good old round of Salt ‘n Peppa “push it” at the camp dance. With the short 80’s shorts and tube socks, I remember it well.

I stood there, with my mediocre A1c and ‘good enough’ attempts for close control, as is so common with the ‘just out of college’ crowd. I listened as these women told of how Dr. Younger supported them through pregnancy and diabetes. As the tears started to flow, a light bulb clicked on. That life time ‘lesson’ that is diabetes management- I need to take care of my self now, so that I can be a mom (or whatever I want) when it’s right. Ever since that day, I’ve had what I consider excellent control. (Not freakishly tight, but a nice place that my Dr and I are comfortable with)

Fast forward 8 years, 2 serious boyfriends, 9 apartments and 1 car later….

It was all coming together. I had the wonderful husband, my prefect wedding, we bought a ‘family friendly’ house and then I started reading. And reading and reading and stressing and stressing and stressing. I was convinced that I’d be on bed rest for 6 months, and I’d live on nothing but pre-measured salads and water. I, as I have done more than once, worked myself into an internal panic. I need to know more - and the more I read on the scary internet - the worse I felt. It was all topped off when my well intentioned sister-in-law asked “you’re not going to die if you have a baby, are you?” I told her to return Steel Magnolias and never watch it again, and no, nor am I going to spill OJ all over me in the beauty salon, or have an armadillo cake. I could feel my panic taking over my rational mind.

The ultimate problem is that this was the one time in my life that my diabetes was going to dictate what I could do. I don't do very well when I can't do what I want. I wasn’t ready to deal with myself if we were ready for a baby, except my diabetes out of whack. I don’t think that I was ready to deal with how quickly my mind wanted to control the situation. I was calm and collected on the outside, but quickly unraveling inside.

I had my annual appointment with my lady parts doctor. I asked her a slew of questions, so she referred me to a high risk ob- just to talk. I felt silly going in to ask questions, but I went anyway.

Why did I beat myself up about this? Why did I let these women’s experiences in the Midwest so skew my reality. If my A1c was 5.0, not only would I be rich as hell for having cured diabetes, but I’d probably be hospitalized for uncontrolled lows.

The best thing that I got, was the information chill pill from Dr Espesito. The facts, plain and simple. It’s not so scary when you lay it all out. He said I was “good to go” any time.

Deep breath out….

So now, I am focusing my “over planning” skills on my husband’s birthday extravaganza in May. Did I mention we are having 90 people to my house? Oye.

And this summer, after our trip to California - cause as I told my friend, I want a baby, but not more than I want wine in Napa in July. We’ll think about it. Just like everyone else in the world – and deal with whatever comes along just like we always do.

Style, grace and a whole lot of 80’s dancing.

Meeting with the vampire

2007-03-29T11:06:00.000-04:00

I left work early yesterday to go get my blood work done in preparation with my meeting with my endo on Friday. I always like going a few days early so that at the appointment we can talk about real numbers, rather than what it was last time I was there. I also know that I won’t pay attention to the conversation and will be a nervous wreck if I wait until the end of my appointment – I hate getting blood drawn. Not to mention that it generally takes weeks to get the results. Before the HIPPA laws, I would get my A1c done, then call to get the results before my appointment, so that if I wanted to kick or scream or cry about the results it would not be in front of the doctor.

I got to the clinic and checked in with the lab. They were going to look up my record and call me in later. About 10 minutes later I was told that I didn’t have any lab orders in my account and “sorry.” Sorry? I drove 45 minutes to get here, paid an arm and a leg for parking and all you have is sorry? So I trotted right over to the area where my dr usually is and asked for the doctor on call (actually I know that they are called the “captain of the day” so I used that term much to the confusion of the nurse). The ‘Captain” happily ordered the labs that I rattled off. Amazed that I knew exactly what I needed.

I went back to the lab. Moved the chair so it would recline, told the woman that I do better with a butterfly needle, and started to have my same old chat about nothing, staring at the curtain divider in front of me, hoping that I would not pass out. Yes, 25 years of having diabetes and my general odds of passing out when having blood drawn is about 50/50. I did fine this time although there were a few seconds there I was unsure. Some deep breathing and mindless chatter helped me stay in the world of the living.

As I left to go meet a girlfriend for drinks (may as well take advantage of being in the city!) I started to think about the interaction. I wonder if there are patients that would have accepted “sorry” as an answer and gone home. Sadly, I think that there probably are. People who go with what the doctor says and don’t feel empowered enough to find out what they really need to know. When the doctor rattles off a suggested new prescription or lifestyle change, I worry about the number of people who “yes, sir” the doctor – all the while saying ‘I could never do that.’ I wonder if it’s a lack of education on what exactly they should be looking for (Ac1, Cholesterol, Lipids etc) Or if it’s a feeling of helplessness or apathy that they just don’t have the energy to care. Feeling beaten down by this disease which we all know, effects every part of your life.

I went to my lady parts doctor recently, and of course, my pregnancy plans were a hot topic of conversations. She said something that really stuck with me. She told me how most of her Type 1’s do great with pregnancy because they “respect the disease” and know how to work with it. I really liked that thought. Respecting your diabetes for the powerful force that it is, yet also having enough respect for yourself that you learn how to control it and manage day to day.

I respect my diabetes as a function of who I am. Just as any mother would fight to get the right teacher or support for their child, I am happy to speak up and fight for my health and diabetes. Because if I don’t, who will?

What did I think?

2007-03-26T16:20:00.000-04:00

That’s what everyone wants to know. I wore the minimed sensor for 5 days. I knew that according to the nurse, I could wear it one more day, but the tape was getting itchy and I was just ‘done’ with wearing it.

I’ve uploaded my information from my meter and regular pump and done the comparisons against what the sensor logged. All in all, for me, it was accurate. I was impressed to see the day by day average and see what the sensor (in blue) had to say versus my meter readings (in black)

My husband and I looked at the graphs and charts and were amazed at what it told us about my general readings. It is truly amazing to see so much data about what your body is doing! It seems I need more insulin overnight. I am not totally convinced about that because I generally wake up lower than I happened to do for the time I was wearing the sensor. But that merits a basal check overnight just to be sure. Oh the joy! I knew that there was something going on in the afternoon (besides wishing I did something more fun than software QA every day) I’d guess my insulin to carb ratio needs tweaking. So, that was very useful information.

I did love being able to check at any time and see, what my blood sugar is and what direction am I going. I am confident that eventually, the pump (which ever company perfects it first) and the CGMS technology will be the standard in diabetes care.

Right now, my main focus is taking my overly prepared, over researched, type A personality, and life long type-1 diabetes, and getting this body that I generally love and appreciate, ready for a baby.

For me the crux of the question is
* Can I live with the 20% accepted difference in range? When my target blood sugar goals are tightened for pregnancy, being 70 versus 90 is a noted difference. On the other side of the spectrum, a reading of 250 could be 200 or 300 according to my meter. Will I be able to trust the sensor or will I be checking a million times a day anyway?
* Can I live with the monitor telling me I am low after I have had a snack to bring myself up. There is a 10 minute lag from what the sensor is and what your meter would give as a reading. Several times I would be feeling low when it said I was 85 (which is close to my target of 90). I’d check and be lower according to my meter, then eat, and feel better by the time that the sensor would alarm for a low blood sugar. When I was low and cranky, the last think I needed was another machine beeping at me.
* Do I want to wear another infusion site. The actual extra site bothered me more than I thought it would. Not the set itself - that I never felt - but the additional visual reminder that I was hooked up to a machine. Looking at myself in the mirror, the quick set site seemed ok, but the sensor just seemed like too much to me.
* I am an admitted wimp. Can I handle putting in this additional site once a week? I went off the pump the first time because the site was too hard/stressful to insert.
* Is the benefit worth the financial cost?

It’s funny, I selected the minimed pump a year ago because of the promise for this technology. My husband and I agreed, it was “a must’ for pregnancy- and then probably not really needed for general ‘life’. After wearing the sensor for a while, I am thinking just the opposite. When the tight control is so critical, I will happily poke my fingers every few hours. Once that little bundle of joy is here, and it’s ok to be 130ish, I can see this technology being pretty handy!

So the answer is that I still don’t know. I go to see my TV star of an endo this week (he was recently on D-Life). I’ll get his valued opinion, then will ask the endo at the pregnancy clinic when I start to see her in May and make a decision.

The bottom line is that it is fantastic technology. I honestly would dream about technology like this when I was a kid. I never asked for a cure, I only asked to be able to “just know” what my blood sugar was. I am truly grateful to the scientists and people who participated in trials that made this sensor what it is today. Are all of the kinks worked out? Not at all, but it’s progress in the right direction. And to an old school, stubborn type 1 who is very set in my ‘diabetes ways’ it’s a huge step in the right direction.

I’ll let you know what we decide to do!

Day Two

2007-03-16T19:54:00.000-04:00

I slept through the night just fine with the sensor attached to my side/back love handle. I even slept on that side and was not bothered by the site at all. Other than when I was thinking about it and poking it yesterday, I have not had any issues with the actual site.

I was woken up by a ‘high’ alarm at 1am. The sensor was saying 204 and my meter clocked me in at 251. I corrected and went back to sleep. I have to say that my night and early morning numbers are higher today than they are normally, so I will have to wait to get more days under my belt before I over analyze.

While showering and changing my insulin pump site, I was looking at the cgms site. Do I really want to be connected to another site? Will it get ‘old’ fast? Will the extra data be helpful? Is it worth the cost? What if we invest the money into the system and I end up hating/not using it. I used an insulin pump in the early 1990’s for about a year and hated it. I felt horrible telling my parents that I did not want to do it anymore after all that they had spent on getting the pump and supplies. They were tremendous and helped me do what was most comfortable for me. Will I be that forgiving to myself if after sinking in thousands of dollars that I decide I don’t like it?

All important things that I hope to figure out this week.

So Far I've been surprise at the accuracy:

Time pump meter
7.09 start 114
7.26 100 104
8.18 90 135
8.54 115 110
9.22 106 116
12.22a 204 *alarm 259
7.21a 172 206
7.50 182 184
8.18 182 170
9.34 144 146
10.20 126 112 feeling lowish
10.44 106 102

I'll keep you updated.

My try at the CGMS thing

2007-03-15T16:48:00.000-04:00

Today I met with the minimed nurse/rep, who happened to also be an old camper of mine. Oye, feeling rather old now! (no comments needed from you other old camper-o-mine out there) I wanted more info on the MiniLink system that just came out. (2nd generation CGMS for MiniMed.)

She showed me the new mini link (that she was wearing.) It is SO much smaller and more impressive than the old sensor. (I saw the old sensor and said no way would I want that on me everyday) she showed me the site that stays in your body (it’s the same as the site for the old sensor) and then talked about the features.

Points of interest. You have to calibrate the sensor at least once every 12 hours. It will remind you. You do a calibration via an old fashioned finger stick. The accuracy is around 20% for a differential, So if your meter said you’re 100 anywhere between 80 and 120 is considered accurate. Not sure how I feel about a range that large. To me there is a big difference between 80 and 120. But we’ll see. She suggested that you check around 4x a day to put that in your pump for data points to see how accurate it is. I didn’t thin that this would take away finger sticks, but it was more often that I thought it would be.

It checks your sugar every 10 seconds and then once every 5 minutes the average if those readings displays on the pump. At a quick glance, you can see 3 hours at a time on the screen with a little graph. You can upload the information to the CareLink website and get as many graphs as you would ever need. I use the CareLink site for my general pump and meter readings already, so I am familiar with that.

You can set alerts for high and low blood sugars. It also has arrows that indicate if you are going up or down at a rapid pace.

I am an admitted wimp, so was a little worried about making a scene at Panera (where we had met) but she put the site in pretty easily. It’s in my love handle area, which she said was where she found it to be most comfortable. The FDA says that you can only wear the sensor for 3 days, but she suggest around a week is more realistic. The sensor seems to get better readings (as in more accurate) after the first day.

The new sensor needs to be recharged every 14 days fully (a full charge apparently takes around 2 hours) but she suggested that you charge it for 20 minutes or so when you change the site. you cover the whole thing with a layer of IV tape- but you just need one.

Here is the problem, for me, and many others. How much does it cost?

I have a 715 MiniMed pump, so I would have to upgrade to the 722. I believe she said that was between $3-500.
The initial cost of the sensor is $1000. That comes with the sensor and 10 sites.
Each additional site is $35 each.
The sensor is supposed to last around a year, but is only under warranty for 6 months. So technically you have to buy a new sensor (For around $650) every 6 months or deal with it being out of warranty until it all needs to be replaced. If advancements are made in the sensor, and it is covered by warranty, you will get the new technology.

The true sales guy in my area is going to work out with my insurance how much/if they would cover it. They think I have a good chance if I throw in the whole wanting to have a baby thing. We’ll have to see.

I don’t have any readings yet, since the minimed lady thought I was on a newer pump, but there is one waiting for me at home. I’ll report back on how it is going. So far the site is just fine, it was a little tender after I was poking at it, but that’s to be expected.

More later!

excuse me, teacher?

2007-01-24T15:47:00.000-05:00

I was diagnosed in first grade, midway through the year. My parents took me out of the school I was in and sent me to a smaller private school where I could get some more ‘individualized attention’. I was the only child with diabetes in school. Everyone was very accommodating, and let me snack when needed test without going to the nurses office. Although, when I was first diagnosed there was not the emphasis on tight control and multiple tests a day. I’d rarely check at school.

If I was ever low I had an extra snack with me. If I had eaten my snack I knew the school had things for me in the teachers closet. I’d just tell my teacher and she’s get me one of the juice cans that my mom had given them. (yes, juice can- with the pull tab top)

I only ever needed to ask for it once. I was in 2nd grade. I remember like it was yesterday. Miss Huver was out sick for the day and we had a random substitute teacher. I watched the clock for a bit. School let out at 2.15. it was 1.30…. could I make it home while low so I don’t have to ask… I didn’t want to ask… I didn’t want to be singled out…. I didn’t want to be different.

I realized that I’d never make the 45 minutes left of school and the bus ride home without having to ask someone for my juice.

I recall timidly walking up to the substitute and trying to explain that the teacher had something in her closer and I needed it. No dice. Then I explained that I had diabetes and needed my juice. Well, low and behold, a classmate heard me. I recall a few taunts of “oh, you need your mommy” - “if you’re too sick for school you should not be here” and a few other jabs that were particularly hurtful. I never asked for another juice from anyone again. Ever.

Luckily I’ve never felt that small and uncomfortable about my diabetes again. That is, until today. How is it possible that a well adjusted 30 year old adult can feel like an insecure child? It was easier than you’d think.

I work in a very small office. There are 6 of us in the whole company. It’s a very quirky company. Most of the employees have been here for over 12 years. I just am starting on year two, so am clearly the new kid. We had a little incident when I started about the insurance plan, but we figured everything out. I’ve never had a problem with my diabetes and work. They like me, I do a good job, everything was just hunky dorey.

Today, one of the owners of the company came into my office. He is a bizarre bizarre little man. He is a fully grown adult with two kids in middle school. He has the worst case of adult ADD I could ever imagine. He asked my office mate for some Advil. She didn’t have any so I offered him some that I had in my purse. And he said…..

(are you sitting down? Because I am glad I was when he said this….)

"This doesn't have any of your disease on it does it, I don't wanna get that"

excuse me? My what?

*snap*

just like that, I was asking for my juice again and felt 8 years old.

I’m still appalled, horrified, shocked…

So, I will no longer feel bad about blogging at work, or planning floral designs for weddings.
Today in that little moment, I went from someone that really cared about this quirky little company, to someone that really just cares about a paycheck.

Unreal. Just unreal.

lightbulb moment

2007-01-09T16:23:00.001-05:00

I was sitting at my desk at work and all of the sudden the light directly above me went off. The rest of the office was still lit appropriately, it’s just me that noticed, and embarrassingly enough, it took me a minute to realize what happened. All of the sudden something was just different.

I skipped my last endo appointment. It was right around the holidays and I just had too much going on in my little world. Just the same, I tried to take a little time and download my pump and meter and take a look at things. I find it’s not always that my doctor has great suggestions, it’s that life is too busy to stop and listen to what these numbers are telling me. The 30 minutes in his office is all I need to stop and make the changes that will correct whatever my current dilemma is.

I downloaded and looked at the graphs and charts. I tinkered with colors and labels and really didn’t get too far. I didn’t see any major trends during any part of my day. (I used to run higher in the afternoons, but those seemed ok) I had this nagging feeling that while I was doing ok, I wanted to be consistently lower. Do I up my basals? Which ones? I am borderline low in the morning anyway … hum… I figured that the answer would come to me eventually. Maybe I should have kept that appointment after all…

And then it dawned on me. I lowered my target so that when I corrected with my pump, it was correcting to 90 rather than 110. After that little change my numbers have been right where I’d like them. Unless, of course, I don’t count my carbs right- but that’s a whole ‘nother post anyway!

Sometimes diabetes is like turning a light off and on. Simple acts that sometimes are taken for granted can make a big difference. You just need a little change of scenery to see what the answer was all along.

Are you in the cool kids club?

2007-01-03T12:15:00.000-05:00

I think it’s because I grew up at a diabetes camp that I think of diabetes as just a part of life. Summer time to me included glucose tabs and stale nabs in a fanny pack, as much as swimming and hotdogs. It’s just the way it was. I’ve ever hid it nor been ashamed or embarrassed by having diabetes. It’s just like the fact that I am right handed, to me. I always say that I have a disproportionate number of friends with diabetes. And I guess I am egocentric enough to think that everyone is like that as well. Why would you spend the energy to hate and loathe something that in the end, you can’t make go away. You can try and pretend that you’re left handed, but eventually you realize, that it’s more effort than if you just went with the flow.

I tend to snicker and mumble something that is not appropriate when I tell people that I have diabetes and they respond with something like “oh my cousin’s sister had a dog that convulsed in the living room because of that” We all have had to live through those wretched tales of people dying and losing various appendages to this disease. Or when someone says, oh, Bill Smith in Ohio has diabetes, do you know him? Oh ya, I’ll look him up in the secret diabetes directory. I mean honestly people… it drives me crazy.

That’s why it strikes me funny that every time I see an insulin pump or a medic alert bracelet I get this little rush. Like an excited 4 year old, I often will walk up to total strangers and say, hey, I have a minimed too… like we are all part of the special cool kids club. Maybe the OC IS like a secret yellow pages directory.

The woman that taught Ryan and I to dance for our wedding had a pump. I always assumed that if I can see it, you don’t mind answering questions about it. So I asked, how do you like the pump? The woman looked at me like I had 4 heads and was less than interested in talking about the pump, diabetes or anything of the sort. I quickly explained all about having diabetes for 24 years and how I was thinking of going on again etc…. I really was surprised at her reaction. Isn’t a pump on your waist band a secret decoder ring to invite you into the club? Is it too bold for me to assume that everyone is as interested in other people with diabetes as I am?

I think that’s why every day at work I sneak a few moments to check in on you all in my secret club. To make sure that everyone else is keeping on keepin’ on. Somehow it makes it easier for me to remember that I can only do the best that I can.

I admit that I miss those days at camp. When sitting out for a few minutes as you wait for your bood sugar to come up was totally normal. Making designs with lancet caps and syringe tops was a sign of status and creativity. Where there was a deep unstated understanding of all that you have to do everyday to make diabetes look easy on the surface. It still gives me a warm fuzzy feeling to think about it. I love that I can get some of that virtual support everyday that is just a few mouse clicks away.

So my secret cool kids friend, today’s password is: combo-bolous…. I’ll meet you at the tree fort after school.

Another one over, and a new one just begun.

2007-01-02T12:26:00.000-05:00

What a year I had in 2006. I finally got over my fear of the pump. 10 years after going off my first pump, I decided to venture ahead with ‘Bonnie” I hate to say it but I don’t know what took me so long (other than my own fears and stubbornness.) Pumping has really steadied my control and I really really enjoy sleeping through the night. (on MDI I was up low between 2-4am at least 3 nights a week) I managed to not gain any “pump weight” a small, completely shallow goal, but one that I’m proud of anyway. I can see how it’s so easy to fall into the pump and eat trap.

We remodeled the bathroom and sold our house this summer, on our own, in the middle of a declining real estate market in the Boston area. It was a lot of work, stress and cleaning. And of course, in the end, we sold it to the people who came to see the house spur of the moment with the dog inside and laundry hanging from every doorway. Figures.

We bought a new house and car this year in preparation for the “next step.” We have been diligently painting and working it make it “our” home. I love each and every inch of our new pad.

This fall we lost my “grampa” at the age of 92. And just this last weekend our beloved “Shannon Dog” went to heaven to join him. We miss them both dearly.

There are 3 things that will stick out for me this year.
1. Taking control of my diabetes to a new level. Go bonnie go. Learning to let go of my fears and invite my husband in to help me in taking care of my health.
2. Getting certified as a ‘professional florist” and doing my first wedding.
3. Figuring out how 2 people make an “us” - my first year of marriage with my too cool for words husband.

Three things I can’t wait to accomplish this year:
1. A planned trip to Italy in September/October.
2. Taking a stab at really getting my floral business up and going
3. Planning on embarking on the – what I’m sure will be a rollercoaster ride – of starting a family.

I hope that whatever dreams and plans you have for this New Year, that you’re able to capture the excitement of them and make it last throughout the year.

A happy and healthy year to you all….

ho ho ho, merry christmas.....

2006-12-19T11:30:00.000-05:00

My most favorite day of the year is coming up. Besides my birthday and wedding anniversary, of course. Christmas is my favorite time of year. There is just something about the crisp air and the smell of pine and fireplaces. Luckily my family also loves Christmas, which, of course, just fuels my addiction. Amazingly enough though, 24 years ago, my mother thought Christmas was ruined forever.

I don’t remember too much about that year. My grandparents were over for the holidays and we were cooking in this great invention called a microwave because our kitchen was under construction. I do remember that Santa brought me a Barbie “wild stallion,” (an actual horse not a wildly inappropriately named ken doll,) red, white, and blue roller skates, and a make up kit. I was 6 years old and Santa was a God. We have photos of me skating around the house with enough early 80’s make up on to outfit an entire gaggle of models while holding my new horse.

But if you look closer at those photos you’ll see the pink footie pajamas hanging off of my skinny body. Through the rouge and blue eye shadow you’d notice the dark sunken eyes that were so glassy you’d think they were from a china doll. You would not see that I had run down past the Christmas tree and actually drained the water dispenser of our refrigerator and then was sick over and over again. You would see the worry and despair in my mother’s eyes, knowing something was drastically wrong, but was too afraid to do anything about it.

The next day I was in the pediatrician’s office before it opened, Barbie horse in hand. I remember 2 things about that visit with Dr. Eldridge. The blackness on the chemstrip indicating that my blood sugar was well above 400, and my mother crying and asking how long I had to live. I vaguely remember my mother defying the doctor’s orders and taking me home before we went to the hospital. She packed me a bag, her daughter would not be wearing hospital gowns that were for “sick children.”

I remember the sea foam green of the hospital room and the many nurses it took to hold me down to draw blood. I remember having to pee in the “hat” in the toilet and needing to let the nurse know every time I went. I remember family coming to visit, and lots of hushed voices and stifled tears. I remember a largest ginger bread house I’d ever seen, and being told that it was “not for me.” I am still mad that I was not allowed to bring my roller skates.

Our whole world changed that Christmas. Words like chemstrip and lancet were introduced. What I ate and who I played with became common family meeting discussions. I am sure my parents never thought we’d make it through. And most certainly, they never thought Christmas would ever be the same.

They were right, Christmas never was the same. It became less about things and more about family. We took the time to think of all of the things we are so grateful for and recognized the many ways in which we had been blessed.

I consider myself lucky that I was diagnosed at Christmas as it serves as a reminder to me, year after year, to be humbled for the many wonderful things in my life. Every Christmas eve, at our family party, I take a moment to myself to think quietly and remember. I try and renew my commitment to myself to do the best with what I am given. And then in a blink, it’s back to egg nog and talks about family and friends and my memories of diabetes are quietly tucked away in the corner of my heart for another year.

Merry Christmas everyone, I hope this time of year you are able to see through all of your obstacles and pain and remember to celebrate the joy in life.

24 down and many many more to go. I can’t wait to see what they hold.

“celebrate we will, for life is short, but sweet for certain”
dmb

mystery paper?

2006-12-13T16:34:00.000-05:00

When I was first diagnosed, my mom was reassured that eventually for me, taking my insulin would be just like putting on my make up. Just something that I did. I was thinking about this today when I was changing my pump site. Next to the bubble bath and nail polish is a container of IV prep and infusion sets. I took off the old site, took a shower, got half dressed, put in the new site and went on my way. Of all the crazy things we were told in 1982 when I was diagnosed, that one just happened to be right.

I could not find my “Christmas time credit card” while buying some gifts online, so I had to clean out my purse. Often referred to as “the pit of despair” by my husband. Amongst potentially 200 used test strips and a check book covered with little blood spatters from the free roaming used strips, I found the crinkled ripped piece of paper below. An old grocery list? My Christmas card addresses? Nope, it’s my life saving basal rates. You know, just something thrown in with my 3 lipsticks and some empty gum containers. I thought, if anyone, you all would get a kick out of it!

Miss Jeckle and Mrs Hyde

2006-12-06T16:22:00.000-05:00

I woke up at 198. Not ideal, but I had been at a holiday party last night and there was probably more in the things I ate than I thought. I corrected, weighed out my 32 grams of cinnamon life cereal and ate my breakfast. I followed it up with my standard cup of coffee on my ride to work. It’s about a 30 minute ride to work. I got in, sat at my desk and then started to feel anxious. I was feeling very unsettled. It had been about an hour and a half since my delicious breakfast, there is no way I could be low. I tried to figure out if I was worried about something or forgot to do something… did I leave the iron on? No way, I wear jeans to work and have not ironed in an embarrassing long amount of time…I have Christmas shopping to do but nothing critical. My husband was not on a business trip to some far away land. There really was nothing that should make me feel so unsettled.

So I checked.

55

Fifty-five?? How in the name of all that is good and holy in this world is that even possible? Of course, if I could answer that, I am sure we’d all be a lot happier.

So I ate my left over Halloween twizzlers that were in my purse. Hum… that didn’t seem to be enough. So I added a ½ bag of skittles…. By this time my heart was racing and focusing on reading or doing anything seemed to be an insurmountable task.

So I ran downstairs to 7-11.

“you don’t need anything else, just take a break and let the candy kick in” I told myself over and over. I stared at the ho-ho’s and the case of donoughts. All I really wanted in life at that moment of time was any kind of hostess snack cake treat. It was all I could do to not rip through the small wrapper that stood between me and my cream filling.

“get a diet coke and go back to your desk” I told myself. I walked to the soda case and had to focus like a high school kid taking the SATs. Diet coke. Diet Coke. I look around and start to think people are looking at me…

At the check out counter the woman looked at me funny when I bought a large diet coke at 9:02am. And then, as if it were an out of body experience, I grabbed a package of cookies and paid before my rational “non-low” mind could chime in.

“ I don’t care if I am high later I need these now now now now now!”

I ate the cookies and swilled the diet coke. It wasn’t worth it. By the time I got back to my desk I was feeling back to normal. That is until I started to sky rocket from the extra skittles and cookies. And then as soon as the bad feeling of being low ended, in rolled my nausea and crankiness that comes from being high.

A double-whammy morning. A panicky low and a nauseating high. It’s the mornings like this and the aftermath of chasing down that high all day that I think a lot of people miss when they talk about diabetes. On paper, diabetes is fairly easy. Insulin, food, exercise. Balance it and off you go…. Unless you’ve been on the diabetes roller coaster or sat next to a loved one who has, you’d never be able to read between the lines and see what makes having diabetes such a challenge.

Tonight when I restock my purse, I have have a mind to write- YOU JUST NEED ONE – on the wrapper. But my happily 132 mind knows that, it’s miss 55 that I need to worry about.

baby steps...

2006-11-29T09:37:00.000-05:00

Thank you

No, really, thank you so much for the comments and support everyone. It really means a lot to me to know that it’s not just me and “bonnie” against diabetes. Rock on OC, rock on...

When I was a kid I was so afraid to admit when I wasn’t 100% on the ball with my diabetes care. I used to hide my blood sugar results from anyone and everyone, because “I had it under control and it was my problem” luckily the thinking of the diabetes community, and my own self acceptance has let me share with other people and bring in the support I need.

I cleaned out a section of our bathroom last night and got an organizer for my pump stuff. It made changing it this morning just a little quicker and easier. (we still have boxes everywhere and locating the mimimed section of brown boxes was easier said than done. Although I did find a box of shoes that I was looking for!) I also got a little pill case and put my non-insulin drugs in my purse, that way if I forget to take them before I leave the house, I am not skipping them for the day. Hopefully that will get me back on track.

Taking them this morning I remembered the last time I was at my endo. I figured that at 30 years old, I had to own up to the fact that I just wasn’t taking them as often as I should. I always took my insulin, isn't that good enough? I knew the “oh s*it, I have an appointment next week” motivator and taking them for a few days before I go visit the vampires in the lab just doesn’t cut it. I talked to my doctor about missing my pills, and his response defines why I really enjoy going to see him.

He starts off each meeting with a “how have YOU been” we rarely dive right into diabetes management. We talk about my job or a recent trip or how his kids are doing in college. And then ease into the “details.”

Eventually I owned up.

“Well, you see, I have not been good at taking my little yellow pill and my little white pills everyday”

“Ok, well, can you think of ways we can help make that easier for you” replied my supportive and not overbearing yet motivating doctor.

We thought of a variety of things and discussed it before he brought my lab results up on the screen. We both looked at the numbers and I didn’t have to ask what they meant. They were up since I was not taking my wonder drugs.

He just smiled at me and said, “well, at least we know they work”

Somewhere is my blood stream swimming around today are those little wonder pills…. Work away little guys, work away.

Confession....

2006-11-28T11:20:00.000-05:00

And that, my friends, is always the way it goes. It starts simply, like changing the blood sugar reminder on my pump from 2 ½ hours to nothing just once. Then it defaults to that and maybe checking after a meal is not as important anymore… and then it slides from before and after every meal checks to just before meals and bedtime. And then maybe just some meals…. The guess and bolus effect. I know it’s not the best way to do things, but sometimes I just can’t get myself to do what I need to do for me, while doing what I must do in the rest of life. When I did check, it was generally ok… that should be good enough, right? I have a severe mental block about taking my thyroid medications and cant seem to get back on a schedule that encourages my taking it everyday… I am sure, that as life gets more complex, it gets harder.

It seems that when one thing slips, it’s like a downward spiral. I totally change my health habits. As I started to test less and less, I found myself eating those extra helpings, even though I know I don’t really need it. I became less interested in checking in on your blogs everyday. Not that I didn’t care or wonder how everyone was, it was just a reminder that so many of you were following the trail I wanted to be on, but had just lost my way.

The excuses are numerous. We sold our house, moved into temporary housing and looked at over 70 homes before we found one that was “it.” My husband had some crazy travels with work (NY, Germany and Japan all the month before we closed on the new house) We had a car stop running so badly that our only recourse was to donate it to charity. My grandfather, at the age of 91, passed away. We got 2 new cars. Our 13 year old “Shannon Dog” was hospitalized and made what we think is a miraculous recovery from “old age issues” and is happily snoozing on our front porch again. I am sure that many of you have had the same experience. The true priorities of life get skewed just in the slightest bit, so that finding an oil company so we can heat our house becomes more important than counting my carbs. (not that the 2 really have anything to do with each other in the first place… but when you’re looking for an excuse… almost any will do)

We had decided a while back that this summer we will be trying to start having a family that includes more than just us and Shannon Dog. THIS summer. Agh. Time to get back into sound diabetes shape. My A1c’s are still “just fine’ according to the Dr’s, but I know I could and should be doing better. Just as easily as I slid down the noncompliant slope, I will start to climb back on board with you all. It is always harder to go up hill and climb back on the wagon. They say that admitting you have a problem is the first step.

“Hi, my name is caren, and I have been a noncompliant diabetic”

While unpacking the numerous boxes in our house, and putting fresh and colorful paint on the walls, I will also unpack my pump and testing supplies and try to view them with a fresh outlook and a renewed commitment. …. I will always set my “check your blood sugar” reminder. I will stop treating feelings (oh, I’m 120 and feeling low so I should just eat something now to prevent the low… which always makes me go up to 180 when I probably would have been just fine. ) I will leave my pill case in a place where I will see it, and rather than brush it into a drawer, I will take my little yellow friend, and go on with my day.

The trick to diabetes is that it’s always there, forever, which some days seems like a longer time than others…. But I don’t need to tell you all that.

(bzzzz bzzzz bzzzzz)
(My pump Bonnie thinks that beeping is so “1980’s” so we communicate on vibrate mode….

I’m off to go check… which me luck with getting back on track…

New horizions?

2006-08-30T11:44:00.000-04:00

Do you see those jammies folded nicely on the chair? Those are my scardy pants. I took them off today and finally went “off belly” for an infusion set.

I had a flash back to when I was a “wildwood” camper, of sitting in the stage in the barn, with a group of fellow campers cheering me on. I giggled, but was trying not to giggle too much as I did my first stomach shot. I’ve been using my belly as a human pin cushion since then.

It put the site in my left thigh, about 1 hand width from my hip. It seems to be doing ok so far. I woke up at 74. Had some OJ with my cheerios and ended up at 230. I think it was the OJ that did it. I just checked in at 150, so I guess I am coming down. We’ll see how lunch goes.

Do any of you have different absorption in different areas? I would like to use my legs and “love handles” a bit more, but I am afraid of sitting on the site or rolling on it at night. For those of you that do use your derrière, do you actually sleep on the site, does that hurt or get sore easily?

I guess it’s all trial and error?

p.s. turning 30 is fab-u-lous! I recommend it highly ;)

Our operators are standing by...

2006-08-21T13:30:00.000-04:00

I remember being in the den at my parents house, I must have been 8 or 9 years old. Flipping though the channels on the TV, I saw a telethon. I loved telethons, I don’t know why. Seeing people helping “the sick children” at St. Jude or Strong Hospital made me feel good. I always wanted to call in and pledge my weekly allowance. It never once dawned on me that someone would have a telethon for me.

I was stopped in my tracks when I heard “children with juvenile diabetes…” suddenly I could not work the remote. I was in shock to think that, diabetes, which I always just associated with life, was telethon worthy.

“But, I have diabetes” I remember thinking to myself. “I’m not sick.”

It got worse. I kept listening to Mary Tyler Moore as she recited the horrifying facts that are the complications from diabetes.

..."Many children diagnosed just decades ago would not have seen their 30th birthday.”

I turned off the TV and began to cry. I never told my mom what I saw because I was supposed to be playing outside, not watching TV.

30…

30…

“So, I have to do it all before my 30th birthday. Man, does that stink.” I remember thinking. Although, 30, to an 8 year old, seemed like a long time.

All of the realities that would come with not living to 30 started to sink in. Why go to college, why get good grades? I’ll have to marry young….

Luckily though my experiences with good doctors, camp and the ADA, it was reinforced that it “was” the case, “years ago” that children with diabetes mellitus would not live till 30. That is no longer the case today.

It is restaurant week in Boston. Where the top restaurants in the city offer a fixed menu for a discounted price. I love restaurants. I love going to eat. It is in fact, my biggest guilty pleasure.

My 30th birthday is Friday. Every night this week, my husband, various friends and I are going to 6 different top restaurants. A celebration of 30 years. I could not be happier.

Last night Ryan and I went to restaurant number one. We had an excellent meal, above expectations. We talked about houses we had seen that day and that maybe we’d think about kids a few months sooner.

He asked me if I was ok being 30. Hearing the clanking of the dishes in the kitchen, the subtle music in the background, and savoring that last bite of dinner. I stopped. And as my eyes welled up with tears, I said that I am just grateful that I made it. I thought about my telethon watching self and was happy for the child I was, confident in the woman I had become, and excited about the mother I hope to be.

With each bite of food, each course that passes by, the laughter and company of my closest friends, I will remember how I got to be so healthy and happy at thirty. I will remember the good and bad of having diabetes. I will silently pay tribute to the countless shots and blood tests. The hours spent feeling sorry for myself, and the years I worked making sure no one ever felt sorry for me. Just like so many things with diabetes, no one but me will know what I am thinking and feeling. I prefer it that way. This week, when asked, I will joyously toast to my age and smile.

I can’t wait to see what life has in store for me in my next 30 years.

it's a very very very fine house...

2006-08-09T11:26:00.000-04:00

Tonight, someone else will be making dinner in my kitchen. Tucking in the kids in what used to be our office, and dream of the possibilities that come with home ownership. Today, we sold our first home.

We went last night to say good bye and let s-dog take one last sniff around. I cried as I realized that I’ve never come home from work through these doors again. I remembered my mom making my wedding dress in the living room. Coming home from our wedding to find that the neighbors had cleaned the 2 feet of snow off our driveway. I’ll think of the hours of home improvement projects that we did on that house. The wondering just how many people could fit in the house across the street, or if every person living there just had 2 cars. As with so many things in life, I will chose to remember the good times we had there.

We cleaned the floors and watered the lawn, packed the last few things into my jeep and were off to our rental apartment. As I went to close the garage door, something caught my eye. A used test strip was stuck to the bottom of the door, I laughed, shoved it in my pocket and drove the jeep down the road. I began to dream of our next house, something a little bigger, a little nicer. Somewhere we will hopefully have children. I pictured having a holiday meal in a room large enough that we could all fit around the table.

As I drove, I couldn’t help but think that it’s ironic that the last thing I took out of our house was a test strip. A gentile reminder that no matter what road I choose, or where I go, my diabetes comes with me. And in a strange way, that was comforting to me.

Diabetes has become intertwined in my personality. It has shaped the choices that I’ve made, the risks I’ve taken, and the ways that I live my life. Some people think of diabetes and they think of Wilford Brimley on TV peddling test strips. They think of their great Aunt Gerdie who died a slow and painful death from complications. Or the overweight lady in the office that just can’t seem to get control of their her “brittle dia-b-tis”

When I think of my diabetes, I don’t think of complications or test supplies or doctor’s appointments. I think of the years I had at my camp, how having diabetes made me able to be confident and ask for what I need in life. Having diabetes is a subtle reminder to stretch for my dreams and goals and try and be the best person that I can be. It gives me a sense of pride that after so many years I’m doing great. Would I rather not have it? Sure. But I am positive that I would not be who I am, without it.

So I thank my little house, for the gentle reminder to remember the good times you’ve had, and dream big for the future.

A note from my mother

2006-08-02T13:30:00.000-04:00

I wish that a note from my mom would account for any of life’s delays and missteps. Like not updating your blog for a month... I am sure that my mom would come up with a polite way of saying “she been freaking busy!!” but rather, I’ll just let you know that it’s been a bit hectic in my little world.

We sold our house. HOORAY! It was almost unbelievable. A nice mom with two little girls will be moving in next week. From offer to close we had 4.5 weeks. The only problem is that we don’t know where we are going… ah, details details… So as I type I am nursing a sore arm, and wondering where I can put my infusion set so that it is not in the way while I hoist boxes out of my house and into the garage. We decided to get a POD and put most things in storage for now. We rented a place for 6 months while we try and find, what my afore mentioned mother calls the “home of her future grandchildren.” (no, of course, no pressure, mom.) So it’s been a surprisingly busy summer. I’ve had to back out of volunteering at camp which is a bummer but something that needed to be done.

Ryan and I bought this house right as we got engaged and worked on it for 2 years. As he said, it was a fixer upper, and it’s fixed, so we’re moving on… The oustide changes are here, we redid every inch of the whole place… I only have a few permanent scars from the work we did- mainly when we retiled the bathroom. But that's a whole 'nother post all together!

On the diabetes front, I got my first A1c after going on the pump. 6.6. I was pretty excited about that. And apparently I lost 5 lbs, although with the stress eating I’ve been doing, I am sure that is no longer the case.

So life is good yet busy. I promise to update more going forward… I am sure the insane real estate market in Eastern MA will be a topic shared often.

p.s. Fred, ya, it’s me, I owe you an email… please see excuse as detailed above

The sun has been too bright

2006-06-21T11:21:00.000-04:00

I’ve become a blog slacker. I admit it. But like most things in my life, I go in patterns of hills and valleys.

In no particular order this is my life these days:

We are trying to sell our house. It’s a lovely little house that we have put a TON of work into. It would be an awesome first house or retiree house for someone. We are just looking for something a little bigger, and with more than one bathroom. We are having our first open house this Sunday after listing it on the MLS. Hopefully someone will come with suitcases full of cash and offer us asking price. But with the market changing and slowing in MA, that is a highly unlikely scenario. But a girl can dream.

I booked my first wedding as a florist. It’s a friend’s wedding in September. I am nervous and excited and anxious and it’s awesome!

Our first friends had a baby girl in February. She is the most precious thing any of us have ever seen. When she comes to get togethers everyone just stands around to see what baby Alyssa will do next. Her mom had a perfect happy perky pregnancy and was even working out at the gym the day before she gave birth. No morning sickness, no excessive weight gain, no really worries at all. The baby is adorable, doesn’t say boo, and I’ve yet to see her cry. Everyone is enamored with her.

I am jealous.

I know that I will end up looking like a cow because of the increased insulin I will have to take, be tired all the time from trekking into my weekly doctors appointments, will be high risk and worry from the second we agree to start trying.

If one more person asks when we are going to start trying I will actually answer them with a “real” answer:

* When my a1c is consistently around 6.0.
* When I’m ready to test my blood every few hours all day every day and stress over any reading over 160.
* When I am ready to worry consistently about every carb, every gram, every ounce of food that goes in this body.
* When I am ready to realize that while diabetes has never been an issue for me in the past, people will comment about my “diabetic pregnancy” and reference Steel Magnolias over and over.
* When I am ready to accept that “good for someone with diabetes this long” as a positive answer.
* When I am ready to accept the guilt I will place on myself over and over again if God forbid anything were to go wrong.
* When I am ready to subject myself to medical students, lab tests and various doctors poking, prodding and telling me that my 6.9 is just not going to cut it…
* When I am ready to reaffirm that I work harder than other people to make life look easy but it’s the only life I know, so its “just what I do.”
* When were damn good and ready.

But for now, I just smile and say, when we have more than one bathroom! :)

D'oh!

2006-06-12T16:12:00.000-04:00

Click, breathe in, hold my breath, 1..2..3.. pop, ahhh resume normal breathing.

That’s what it sounds like when I am changing my infusion set. Click it into the inserter thing. Take a deep breath and tell myself that I just have to do it and on the count of three…. Push a little harder, squeeze both sides of the button … pop …starting to need to breath again … it’s in.

This weekend there was an extra step. After the pop was a DUH! As the infusion set popped out and fell into the sink. For a moment I looked in disbelief. I had forgotten to take off the adhesive. I guess that’s what I get when I try and rush.

The worst part is that I now am short on insulin and have to change my site again tonight. I really love the pump and I think it's easy most of the times, looks like Bonnie is trying to make sure I don't take her for granted!!

A numbers game

2006-06-08T10:24:00.000-04:00

I hate math. I do. It took me a long time to be able to admit it, but that’s a fact. Strangely I come from a family of finance guru’s, CFOs and doctors. I guess not only did I get diabetes, I got the anti-math gene. I can essay my way out of a black hole, but ask me to figure out anything more than balancing my check book and how much tip to leave and we’ve got a problem on our hands.

Yes, I know, diabetes and math go hand in hand. Carb ratios, correction boluses A1c’s and weekly averages. I never paid attention to the averages on my meters, just what my A1c clocked in as. I am generally pretty happy and pretty consistent with my A1c so I leave it there. Although, the pump makes getting those numbers and averages easier than ever. So I’ve started to pay attention just as a general point of interest.

I was sick for a bit over the past month and I noticed my averages starting to creep up. A tell tale sign that the A1c that I generally find acceptable may be a bit higher than anticipated. Once I was feeling better, I started eating better, and have been pretty happy since then. Last night after a marathon house cleaning session, I checked, 103 again. I thought that I’d take a peek at the averages just to appease my curiosity. It had been lingering around 158 when I was sick, so I was psyched to see a 110. wow, 110. That’s fantastic. Then in there I found myself confirming what I have though for some time. It’s not that I don’t like diabetes math. It’s not that I can’t do the calculations, it’s my deep down fear that when I do get things figured out, I won’t like what it says.

When I was a kid I was relentless with not getting my A1c done. I have hidden, shredded, burnt, and flushed lab request forms. I’ve faked fevers and “lost track of time” until the lab closed more times than I can count. Still to this day, I often pass out when getting blood drawn. I would always think that maybe its that little rubber band, maybe the sterile glow of the fluorescent bulbs humming oh so quietly, or the fresh out of phlebotomy class technician that can’t quite find the vein. Sure, I suppose those are things that no one likes. But to me it’s the office visit a few days later, seeing in hard cold black and white my “overall indicator of health” on a stark white piece of copy paper that really is at the heart of my apprehension. I find it overwhelming that all of the finger sticks, all of the good food choices and all of the worry can be whittled down to one number. (I know I know, I’ve been told time and time again that it’s just a number and there are many factors that indicate health and wellbeing etc… bla blab bla… I don’t believe it.) I am working on believing that my test results are a tool and not a test. There is no pass or fail, its just a guide. My problem is that I didn’t get D’s in school, and I certainly don’t want to get D’s with my health.

But for now, I will bask in the glow of my 110 average and make friends with my inner math goddess.

In sickness...

2006-05-25T11:01:00.000-04:00

It was a week ago today, sitting right at my desk at work. Ugh, cramps. I popped a few Advil and tried to make it look I was working while I waited for the medicine to flow through my veins. 15 minutes later, nothing, in fact it was worse. The pain got so bad that I started walking around the building, wincing at every turn. When I almost passed out in the ladies room, I knew we had a problem.
I made it back to my desk and checked, always trying to rule out some crazy diabetes issue. Nope, 178, that was just fine 2 hours after my breakfast. I finally admitted to my co-worker that something was not right. Fast forward 20 minutes, and I was in my co-workers car, on the way to the hospital.
My husband met me there and we got checked in. Eventually they confirmed what we had suspected. I had an ovarian cyst rupture. I had one a few years ago, but I don’t remember it hurting so much. I figured out that the only place to place my pump was on the neck of my gown, at least then everyone would know I had diabetes.
2 blood draws (neither of which had an A1c in there, I asked) 4 ultra sounds, an attempted IV and one shot of morphine later, they said there wasn’t much they could do. I was feeling better by that point and just wanted to go home. No problem.
My husband was the one that pointed out that not once the entire 7 hours we were in the ER did anyone ask or perform a blood sugar check on me. Not once. It’s not like I was hiding anything, my pump was on the front of my gown. I was astounded. I had heard that in hospital care of diabetes is shotty at best (sorry, to be punny). But this really amazed me.
I guess it’s true that you are your own health advocate, and have to know what is best for you. (And if you don’t / can’t hopefully you have a supportive friend/parent/spouse that can step in.) I did in fact need a correction as my blood sugar creped up. I checked to see what the morphine was doing, and if I needed to eat anything before they took me for the ultra sound.

3 nuggets that I picked up on in the ER.

My am my own best doctor when it comes to my diabetes.
My husband will try and tip anyone (I thought he was crazy tipping the Christmas tree guy, but when he was worried if he had to tip the orderly that took me to the ultrasound suite, I knew we had a problem)
The flu. Yes, I ended up being sicker from going to the hospital than I was before I went.

(Feeling much better now, thanks.)

Here comes the sun

2006-05-17T10:22:00.000-04:00

The New England area has been under water for the last week and a half. Several towns north of Boston are flooded and life has been forced to stop for the time being. Schools and towns have been forced to shut down and wait for the waters to recede. Today is the first day that the rain has ceased, and the sun is coming out of hiding.

For most, there is a renewed spring in their step and a feeling that “this too shall pass” and summer will soon be on it’s way.

Unfortunately, for my friends, the rain may as well still be pouring down. We recently found out that in our group of friends, the younger brother of one of us was tragically killed in a boating accident. He was 21 years old. Just days away from his college graduation. I never met him, but for some reason I am very emotional for the loss. Perhaps it is because I can remember the hope and promise that came with college graduation. The wonderful years of true self discovery that followed and have lead me to where I am today. My heart aches for the parents, who lost their youngest child. Contemplating starting a family soon, I can only begin to imagine the devastation that something like this would cause.

I was going to share about how Ryan and I went to San Diego this past weekend. We saw the zoo and the monkeys. We dined on great food and really enjoyed the time together. But rather, I will remind you, as life tends to remind us in an occasion like this… to love and truly live your life. Sure, there are parts of life that stink. People don’t like their jobs or have struggles with family or money. It’s all too easy to look up from life and not know where the last weeks, months or years have gone. Many of us struggle with diabetes in our bodies or in our children, and wonder how or why this happened to us.

I hope that having struggles with my health only helps me see how intensely sweet life really is. Sure living with diabetes is scary. I see the complications that this disease can cause set into my friends, and I worry for myself. I can feel overburdened by the pump and testing my sugar, always worrying about highs and lows. The oh so real and concerning “what if’s” of life. Today I am renewing my commitment to see the joy in everyday events, and remember that God will only give us as much as we can handle and learn from.

So in memory of our friend “Auggie” I ask you to smile a little more often, compliment your fellow neighbors, give your children the extra bedtime story, and acknowledge that this life we live is only as wonderful as we let it be. When the rain comes, go outside and splash in the puddles, watch in awe as trees drink in the water to nourish their leaves. Remember to see the beauty in everyday life. Let the people you love know you love them, and most importantly, make sure that in this busy world, you take the time to love yourself.

Me too!

2006-05-05T10:40:00.000-04:00

Accent: Apparently I have an upstate NY twang. Occasionally when a little boozed, a Boston the’reh, or foourh.
Booze: Chardonay, micro brew beer
Chore I Hate: folding laundry
Dog or Cat: dog- Shannon Dog or “s-dog” She is 13 and super fabalous.
Essential Electronics: My laptop.
Favorite Perfume: Romance but I often forget to put it on.
Gold or Silver: Silver
Hometown: Rochester, NY
Insomnia: Rarely
Job Title: Project and Account Manager
Kids: Only if s-dog counts
Living arrangements: fixed up house outside of Boston with my hubbie
Most admirable traits: I never arrive anywhere empty handed.
Number of sexual partners: none of your business
Overnight hospital stays: nose surgery after a playground accident in 4th grade
Phobias: dying young
Quote: Sometimes on the day to a dream, you get lost and find a better one.
Religion: Catholic
Siblings: 1 older brother
Time I wake up: 7:30ish
Unusual talent or skill: ability to check my bs and take insulin (pre-pump) while driving
Vegetables I love: corn (I know it’s a starch but most people don’t know that!)
Worst habit: Leaving diet coke cans all over the house.
X-rays: Most recently my hip, but teeth, both wrists, chest at some point in my life
Yummy foods I make: delicious chicken parm, broccli and corn caserole
Zodiac sign: Virgo

This is my pretty princess dog wearing the latest creation from floral school. I could not help myself!

the eyes have it

2006-05-02T10:40:00.000-04:00

update: I made the appointment. Sometimes I just need to sulk for a bit before I do what I know is right.

When do you go?

2006-05-01T14:09:00.000-04:00

Growing up with diabetes in the 1980’s a lot of the “motivation” for sticking to your doctor’s plan was fear based. “Do you want to grow up and lose your legs?” or “Keep cheating and you will end up being blind from your diabetes.” My all time favorite was when my mom was instructed that any blood sugar over 180 was to be written in red and placed on the family’s refrigerator. Although pretty shocking now, it seemed to work for me and a few of my diabetes cohorts from camp.

Anyway, in part because I was so warned about dreaded complications, I tend to look for them. I often wonder if what I am feeling is because I hurt/strained/bruised something on my body or if the pain/itch/burn is caused by my diabetes. While I generally have a positive attitude, I pretty much assume that every physical change in my body is diabetes related.

Case in point, a few years ago, I started wearing flip flops to work. It was a pretty casual place and it just seemed to be the thing to do at the time. After a while my feet started to ache. They would get so cold that they would actually be quite painful. I brought it up to my doctor at one of my checkups. He was perplexed that I was feeling anything out of the ordinary, and was sure it was not nerve damage. He checked my feet said they were just like any non-diabetic and to just keep and eye on things. He also suggested that perhaps I try different shoes.

Long story short, my feel were painfully cold because it was May in New England and I was wearing flip flops. There was an air conditioning vent blowing on my feet! It was all fixed when I started to wear closed toed shoes. Duh. In my head I was adding a wheelchair ramp to my house and figuring how I could get around when my feet were taken away.

As of late, I am seeing a lot more floaters in my eyes. Mainly when I am at work. Is it the sun coming through the windows? Is it really worse than it used to be? Is it because my control is assumed to be tighter now that I am on the pump. (Although my A1c when I started was 6.8, so I can’t imagine it’s changed that much.) I feel like I should go get them checked out, but am scared. I was just there in January and everything was fine. It’s not any of those black spots or flashes that they always ask me about. I know, I know, I should go and check it out. But, you see, I am already figuring in my head when I could schedule laser treatments to resolve whatever mess they may find.

It would be my first visible complications of having diabetes, and I don’t think I am ready for that.

Is it too easy?

2006-04-23T10:19:00.000-04:00

One of my fears of going on the pump was all of the work that was going to come along with it. Testing more often, checking for air bubbles in my tubing, filling the cartridge, changing the site, carrying the darn thing around with me… too much work. But is it?

Last night, we had Ryan’s sister over and had great time. We had wonderful conversations, some wine and steak tips (a household specialty) after many many “appies”. I had bloused for some of the appetizers and wine as I was munching along. Before we had the official dinner, I checked and was 148. Which was just fine with me.

After indulging in dinner, I ended up falling asleep on the couch and sleepily made my way to the bedroom after a bit of nudging by my husband.

Round about 4am I woke up. Nauseous, and feeling like the Sahara Desert has moved into my mouth. Had I had that much to drink? No way. I got up and stumbled to the living room, which was the last known location of my test kit. 298. I rubbed my blurry eyes and tried to focus again, did that really say I was almost 300? I thanked God for the bolus wizard as I corrected and went back to bed. What the heck happened?

I woke up again around 6. The answer came to me like a bolt of lightening. Duh, you didn’t cover dinner! No wonder I was so high, and honestly, I was a bit amazed that I was not higher. In the 24 years with diabetes, that was the longest I had ever gone before I realized that I hadn’t taken my insulin. Maybe this insulin pump isn’t so bothersome after, in fact, it seems that it is now too easy to make diabetes less of an importance or burden (depending on your attitude) on my day to day life.

The best part was that Bonnie, nicely corrected me to a lovely 98 this morning.

On a side note, today is my husband’s birthday! Happy birthday! Happy birthday! Happy birthday!

From your “secret” favorite movie:

"We need a witness to our lives. There's a billion people on the planet... I mean, what does any one life really mean?
But in a marriage, you're promising to care about everything.
The good things, the bad things, the terrible things, the mundane things... all of it, all of the time, every day.
You're saying 'Your life will not go unnoticed because I will notice it. Your life will not go un-witnessed because I will be your witness'."

-*-Shall We Dance

I love you. Here is to many many more.

My School Yard Bully...

2006-04-12T11:20:00.000-04:00

I have been on the pump for 5 weeks so far and I really like it. I did not realize how much of a burden it was to have to take so many shots each day. I’m not complaining about them because that’s just my reality, but it was not until I had to tell myself each night- “it’s ok to fall asleep on the couch because you don’t have to remember to take your Lantus,” that I realized how much of a pain it has been.

I feel like I really have a good handle on my basal and bolus rates, or as good as you’d expect to get. I even used a temporary basal when mulching my yard this weekend. So it seems like this pump transition was easier than I expected.

The problem is the “I can eat anything, anytime” feeling. And the dreaded pump weight gain. I had been doing pretty well in terms of trying to correct blood sugars, but not over eat, thereby increasing my insulin needs. In general, I’ve always been pretty good about not overeating. Well, that is till these little cuties came into the office…

Don’t they look sweet? Sure, I want to help you get your saleswoman of the year badge. I want to support my local troop. So, I got some thin mints. 4 cookies are 22 CHO. That’s not so bad, right? So I added a few to my lunch and continued on my way.

I was driving after work, on my way to class. It’s about a 30 minute drive. I COULD NOT STOP eating those damn cookies! It was like I had been possessed. I ate the whole sleeve on my way to class. In my head I was having the pump weight gain versus good A1c debate…. I gave in and took what I guessed to be the right does. Counting the number of those devilishly delicious morsels that I actually ate was just too “real”. About an hour into class I was so thirsty that I wanted to suck up the puddle outside the window. I ended up in the bathroom, drinking water from my hands. Thank god no one saw me.

Most of the time, I feel like I am really in control of this disease. And then there are times, in the back of a floral design school, where the reality comes out. While I can happily live my life playing games with this thing called diabetes, I was reminded, once again. That I better play by its rules.

A nice problem to have…

2006-04-06T14:38:00.000-04:00

When I was a kid, my mom used to tell me that some day when I am a grownup, testing and taking my insulin will be just like getting up in the morning and putting on my make up. She tried to make sure that I knew taking care of my body in all ways (not just diabetes) was important. We would often put on matching face masks and have pedicures together. As I got into my teenage years, I would always ask for a pedicure for birthdays for my "poor diabetes feet" (wink, wink)

I couldn't help but think of that this morning when I was watching the Today show, drinking coffee, and trying to keep the dog away as I quickly changed my infusion site. It's just my life. Changing my site is just like putting on my makeup. (Although there are often days where I skip the makeup.)

Last night, I was showing some good friends Bonnie for the first time. They were very cool and asked some great questions. One of the things they asked was, "So, you have this on all the time?" Yep, all the time.

I was thinking of that this morning as I was talking with my husband about my 30th birthday (coming up all too soon) And since some things do not change, I immediately wondered how I could work a trip to the spa into the big day plans. (I have even gone so far as to ask my endo for a script for a pedicure after he examined my feet. He laughed, I guess he thought I was joking.) I love the spa. I love going and papering my skin and muscles. It is my ultimate guilty pleasure. This body does a lot for me, despite the whole autoimmune thing, I should be nice to her. But then I was thinking about logistics of it all. How does one get am hour and a half body scrub massage thing with a pump. I am still stumped.

Anyone have any suggestions?

My Top 5...

2006-04-05T11:45:00.000-04:00

Thanks Kerri! Why work when you can Blog!? :)

Top Five Non-Diabetes Related Websites
* Google.- How else would I know what my ex boyfriend was doing AND what hotels are cool in the Napa Valley.
* Boston.com
* Thenest.com – carry over from wedding planning.
* Hotmail- does that count?
* Overstock.com/ebay.com I am perfecting my online bargain hunting skills.

Top Five Reasons You’re Grinning Today
* I have finally done something I’ve wanted to do for YEARS. I am in floral school part time at nights. It’s always been a dream of mine, and I am psyched to be doing something about it! I am hoping to do weddings and events with my long time friend. ANYTHING is better than sitting in front of a computer all day!
* My husband is coming home from a week long business trip today.
* We found out that my beloved “Max” (a 1998 jeep cherokee) only needed $350 worth of work to get what sounded like a little man trapped in the engine out.
* It looks like a blizzard outside and it reminds me of my wedding in December. We got 2 feet of snow the day before the big day.
* We are going to my favorite restaurant this weekend. “The Coach Grill” It’s been 3 years since we got engaged. (April 10)

Top Five Uses for Bacon Bits
* To get my husband to do just about anything! J He LOVES bacon.
* A few sprinkled in my dog’s dish to make her think her boring old food is exciting again.
* Getting the yard work done (see above post regarding husband’s love of bacon)
* Getting the oil changed in the car (see #3)
* Getting the laundry done (see #4)

Top Five Places You Want to Travel To
* Anywhere where and inevitable adventure will ensue…. I love to travel!
* Africa- for Safari. I LOVE giraffes. Also know as “haraff-ies” I have a feeling this one will take a while to accomplish.
* Alaska
* Napa Valley
* Nova Scotia- I LOVE oysters, I’d be psyched to get some PEI’s right from PEI!

Top Five Guilty Pleasures
* Medical reality shows. My husband hates them, but since he travels for work a lot… I get to enjoy them as much as I want…
* Shopping at Macy’s. For some reason I feel like I didn’t really spend money if I put it on my Macy’s card.
* Weekend get away’s. Because of DH’s travel schedule, we have lots of points and miles at hotels and we use them for adventures!
* Eighties Big Hair Bands- Bon Jovi tops that list!!
* Really good raw bar seafood. Oysters, clams, shrimp….

Little victories…

2006-03-29T14:45:00.000-05:00

I remember when humalog came out. I was so used to waking up high and it literally taking all day to come down. Around dinner time I’d level out, just long enough to go back to bed and rise again… those dastardly teenage hormones. My nurse, a type 1er herself, raved to me about this new insulin called humalog. I was given strict warnings about how and when to take it, and not to take it until I see the food I was going to eat because it worked SO quickly. Bla bla bla… I’d heard about miracle things before (yes, I even tried the air pressure “no needles” thing) so I was less than excited.

The morning after my appointment I woke up around 270. I thought I’d give the new stuff a test drive. It still looked like regular to me, still smelled like insulin… I took a few units and waited. One hour and 17 minutes later I was 135, and floored. I could not believe it actually worked!! I ran around the house telling anyone with ears how amazing it was to me that it was only 10:30am and I was in range! A few smiling head nods later from my mom and brother I was still in awe. It actually did what it said it would do.

When I went on lantus the result was not quite as energetic, but I was happy to give away my NPH thinking that the new stuff had to be better. Control wise it was, but man oh man, the sting from that shot always hurt. It often times was so bad it would take my breath away.

Being on the pump, I feel like that teenage girl again… Every time I check and am in range I think, “Hot damn, it does what they said it would.” Despire my long standing dislike of the pump, I am loving every second.

I don’t miss those lantus shots, not one tini-tiny bit!

It takes 2 to get a thing done right....

2006-03-23T14:09:00.000-05:00

My husband is wonderful. For a plethora of reasons, which is, of course, why I married him. He has jumped into the diabetes world head first and is doing really well in learning and accepting all of the “fun” that comes with loving someone with very stubborn, set in her ways type 1 diabetes. (yes, I am a stubborn, old school, we did it this way in 1990 so that’s how I am going to do it, don’t try and pawn off those short needle syringes on me, I use the long ones type of girl.) He knows that I hated the pump. He knows that I went on the pump for us, so I can work on my A1c and when we’re ready we can have kids. He has been very supportive in anyway that he can be while we are adjusting to me being on the pump.

Ryan leaves for work about an hour and a half before me. One of the things that he does is wakes me when he leaves to check blood sugar. (I’ve been focusing on getting my overnight basal set.) I upped my basal last night and after my obligatory check at 3 am clocked in at 78, I was interested to see what I was in the am. This morning he nudged me and handed over my flash, we both watch the screen process the test and up pops 500.

500? I rubbed my half awake eyes and think I’m adding a 0 to that.

“Does that say 50?”

‘Um, no honey, that says five hundred”
I didn’t even know my meter could read that high.

“Did you pull out the pump in the middle of the night?” he asks.
Nope, it looks ok.

“Where are those pee strip things, isn’t that the next step? Then take some insulin in a shot” He rattles off the steps as if he is Elliot P. Joslin himself.

“Actually he says, clean off your finger and check again, just to be sure”

I dipped my hand in the water by the bed side table, oh so sanitary, I know. And recheck.

“132, that’s more like it” he says proudly.

Then, staring at the vat-o-glucose tabs with the top screwed on wrong, we realize what happened. My treatment at 3 am was 3 “tutti-frutti” glucose tabs and the residue was still on my fingers.

While I could rattle off all of the amazing trips and restaurants Ryan and I have been to, and all of the wonderful things has done for me, it’s the supportive moments in the wee hours of the morning, where I am slowly but surely letting him in to help with my diabetes care, that make me know for sure. He is a keeper.

The OC

2006-03-20T17:14:00.000-05:00

I volunteered this weekend at the Barton Center for their annual road race. I was happy to lend my time cheering on runners and my husband loved helping in the kitchen and making coffee for the spectators. While I was there I was talking to a friend that admitted that she found my blog (HI) and we had a conversation about why we were drawn to reading blogs in the OC.

It’s something that was wondering about myself just last week. What is it about people chronicling their everyday on the internet. What draws me to read about PWD and parents of kids with diabetes day after day. Feeling the highs and lows of blood sugars and life, mostly with perfect strangers. Admittedly I know some of the terrific bloggers out there, but the majority of your are just beings behind a computer.

What we came up with mirrors my firm belief in diabetes camps and support groups. Simply enough, it proves that we are not alone in living with diabetes. The enormity of that short statement is hard to explain to someone that does not understand all of the ramifications that having a chronic illness/condition has on your life. Like the doctor that said it should take about 10 minutes a day to manage your diabetes because that's how long a few checks and shots take.

Despite my knowing better, I have measured the success of a day based on what my one touch said. I have cried when my A1c was higher than I anticipated, even though I knew I had not done everything I could to manage my health. I have cursed my efforts of being in tight control when it meant that I was low walking into an important business meeting and couldn’t focus my eyes on the presentation I was delivering. I knew I should not eat something/go for seconds and did it anyway. I wondered how much I should save for retirement and will I ever get to use that money for anything other than prescriptions.

Every time I have an ache or pain in my legs I wonder, do they hurt because they hurt or is it neuropathy. The bittersweet feeling of saying, I’ve had diabetes for almost 25 years and don’t have any complications, yet. I worry about being a burden on my husband and future children if those complications do arise. Waiting and wondering about the unknown terror that this disease can have on my life, while living life and all of the ups and downs life brings everyone.

The beauty of the OC is that you “get it”. Without even knowing me, you understand because you have been there. You don’t try to ignore my worries about my future and my health, you do not brush away my concerns with a well intended “Don’t worry, you’ll be fine.”

Having a closet full of syringes and infusion sets is normal to you. You’ve spilled your bag and syringes have come flying out much to the horror of passers by. You’ve eaten sugar packets and single serve jelly containers at restaurants when your food has not come quick enough. You wonder what life will bring you or your children, you think of cures and then come back to reality. This disease is only tackled one way, one test, one day, one A1c at a time. Anything more than that would be too overwhelming to think of, although, we’ve all gone there in our heads.

So, on behalf of myself and the anonymous readers out there, I thank you. Thank you for putting your anger and frustration and happiness and accomplishments out there. I can guarantee, that with each frustrated or encouraging post, at least one reader has nodded with agreement, or truly felt your emotions.

When bad days come, and no one seems to understand, we are lucky that we, the OC, have each other. And that is worth all it all.

update

2006-03-16T16:15:00.000-05:00

In my typical luck with the pump, I had quite the experience Tuesday switching to insulin.

My husband and I got into Logan airport at midnight. We were in Hilton Head visiting my family (had a great time and learned how to cook my dad’s famous shrimp)

Being the over planners we are, we stayed in a hotel in Boston because my pump start was at 9 am downtown, and by the time we got home to my little suburb it would be have been 1:30 and we’d have to heave at 6:30 to avoid all of the traffic going that way. So the perfect stage was set… my husband was even coming with me to the appointment so he could learn all he could.

We get to Joslin about 3 minutes late… not too bad considering the construction that we needed to go through… I missed breakfast, but was running a bit high from not having any Lantus on board, so I had a few PB crackers and planned on testing out the new pump with some breakfast afterward. We checked in and then we waited.. and waited…. And waited… and waited…. At 10, I asked the receptionist if nurse so and so was in, she looked up at me like I was disturbing her from something and paged the nurse…So I waited…Mayhem ensued which kept the waiting room quite entertained, and long story short, hubbie had to take a cab at 11:30 to his office to make an important meeting (which I refused to let him miss because of this).

I was not seen until 12:30. I was mad, really mad. I understand that people get sick, I do….but to leave me waiting there for 3 hours?! And then I had to go looking for someone? And then supervisor so and so said, oh we’ll just have to reschedule you, I'm sorry about this… um, I had no Lantus in my system and was NOT taking small shots throughout the day. I actually said “Hi, I have this thing called diabetes, have ya heard of it??” Eventually a nurse saw me on her lunch break… Grumble, grumble…

But, the good news is that I like it. I really like it.

I’ve done 39 blood sugar checks in 48 hours… and have avoided any major highs or lows… while overnights are not right still, I made it through the work day not moving more than 40 points all day…. game on…

Thanks for all of your support!!

Dance of Joy

2006-03-09T11:14:00.000-05:00

My husband travels for work a lot. Generally no where exciting, touring aging manufacturing plants and talking with banks. The only excitement is when I get the nightly check in calls detailing what enticing meal he ate (last night was "fall off the bone ribs"- a personal favorite of mine) and the occasional "cheezy trinkets from afar," generally purchased in the airport on the way home. His travel does not generally bother me, and I quite enjoy a night or two at home to catch up on my DVR'd shows.

Last night, though, I was a bit nervous. I had to change my pump for the first time, alone.
When I was on the pump about 10 years ago, I distinctly remember one instance of changing my pump alone. I was in my dorm room watching Oprah. I anxiously grabbed the soft set and started to jam it in. This was before they had any sort of inserter, and I was a slow shot giver. Two really bad combinations. Oprah started mumbling and it seemed like she was yelling down a hall...just keep pushing, caren, almost done... The room started looking brighter than it had just a few seconds prior....breath in, breath out, breath in....is it warm in here?

Next thing I knew, I woke up on the floor. I had passed out from having to change that stupid thing. And the worst part is that I didn't get the site in, so I had to do it again. I went off the pump a few months later.

Skip forward to last night. I had the pump all ready, was standing in my kitchen cleaning the site with my alcohol swabs. In my head I was reminding myself, I choose to use the pump to be a healthier person. This is my choice....I am big into self encouragement speeches.... I take the inserter thing and boom, it's in. Wait, I didn't feel a thing, it cant be in... I check again..yup it's in. It didn't hurt, it didn't hurt.... can that be right? I must have done something wrong. 5 minutes go by... still not hurting... and then starts the embarrassing, thank God no one is home happy dance.... I CAN do this, it is MY choice and it's going to be awesome.

Next step, insulin. Bring it on.

Mutiny!

2006-03-07T14:40:00.000-05:00

I often feel that I am just the spirit in this body, and it really would not matter who the body was, I would be essentially the same. It’s a bit more voodoo/ sci-fi than I generally tend to believe, but it’s true. All in all, I have been quite happy with this body. (minus the auto-immune, shall we say, issues) However, recently I am afraid that the vessel may be rebelling. Indeed, we have a mutiny on our hands.
My saline trial is going just fine. I am changing the infusion sets with minimal hassle and pain. After about 30 minutes the sting from the needle goes away and I am all set for a few more days. I am figuring out which pants work best with the pump and where I can hide it when I am out and about. My body seems to not mind the pump. Hooray! The problem is that I also have to continue to take my shots until next Tuesday. I did not think that this could possibly be an issue, having taken 4-6 shots a day for 24 years. But I think this old ship has had enough of the double life.

I have never bruised so much from shots in my life. It does not seem to matter, leg, butt, belly… bruise, bruise, bruise….and I am not talking little bruises. Big, black, ugly ones. Sigh.

The final straw for me happened this weekend. I went out with a girlfriend for dinner and to see a band. The restaurant/bar was about an hour from my house. After trying on several outfits to make sure the pump was well out of site. I packed my bag, remembering to bring my bedtime Lantus, just incase I was out too late, and I jumped in the car (I was SO proud of the fact that I brought my Lantus with me). I really was feeling like I finally had a good grip on my health.

We met, sat down and started chatting. I could chat with this particular girlfriend for days and still have things to talk about. After a margarita and some chips, I reach for my humalog. It was almost as soon as my arm started to go for my purse that I knew. It was going to be a long reach! My humalog was sitting at home, on my kitchen table. Damn. Damn Damn. I felt like I did in 5th grade when I forgot about a homework assignment, naked and vulnerable, and not anything that could easily fix the situation.

I had ordered a low carb dinner anyway so we ate. Then gave up, what I thought to be the perfect seats to watch the band, and we went on a quest for humalog. 5 pharmacies later, we found it. I convinced them to ignore the “prescription required” on the box, telling the 18 year old behind the counter that yes, it was novalog that you need a script for and not this... I paid my, gsap, $85 for the bottle and we headed back. (I knew that I could get R if all else failed.)

Of course we lost our seats, and had to pay a cover to get back into the same bar that we were just in. But the part that irks me the most, is that my diabetes managed to change our plans. I hate that. A lot. My friend was great, and we had fun trying to find a CVS that had an open pharmacy in a strange town, but for that hour I was different. “Stop your plans and do nothing till you do this” different. That’s that hardest part of diabetes for me. I generally blend in with the crowd, my trials and tribulations of having this disease were my own issue, and until very recently (learning to share those burdens with my husband), no one other than myself saw all of the work that makes it look easy to others.

It amazes me that 24 years later, I am still learning and adjusting to this disease. And yes, the largest bruise to date was a result from my new, very expensive bottle of humalog.

I am ready to get this pump show on the road!

Pump Factoid for the Day

2006-03-03T13:32:00.000-05:00

When getting out of the shower in the morning. Reconnect to the pump, then put your underpants on. This way, you’re less likely to rip out the whole thing when using the bathroom later in the day.

(p.s. underpants is one of my favorite words)

Queen of Saline

2006-03-02T14:37:00.000-05:00

I started my saline trial on Tuesday. In a very bright conference room at Joslin. After listening to the gentle buzz of the florescent lights hanging above, day dreaming about life with Bonnie and where she will take me, I finally faced my fear. The very patient nurse encouraged me as I said “one, two, three, bombs away” (Bombs away? It makes me sound like I am at war with something. Perhaps I am. I’ll come back to that someday.)

And then I was connected. No panic attack, no sweaty forehead, the room didn’t spin, and I felt fine. The site was not in the expected belly region, she had me put it in my upper/hip/butt area. The nurse affectionately called it my “future saddlebag area.” I chatted with her for a bit, and then went to go home. As I was getting in my car, I was very aware of where the site was, should I try and not sit on it? Will the lap belt rub against it? And then I made my mistake, I tried to slide in to the car not hitting my hip. I got home and tried to sit carefully on the couch as my husband asked me a series of questions. Even later that night, laying on the couch, I made sure to turn just a bit, to make sure that my site was ok. Surprisingly enough I didn’t sleep well. I tossed and turned and the remembered the infusion site and turned again. I bounced around from a couch and 2 beds before I finally settled down and got to sleep.

For the record, the site it’s self never hurt. The sting that I felt taking out the needle paled in comparison to my nightly Lantus shots. I woke up in the morning just not feeling right. I threw on my jeans and headed to work. My whole tush area was sore. I thought for sure that it was the infusion site. Wondered if it was too late to return this contraption.

And then I remembered what I had done.

I my haste to be sure not to hurt the infusion site, I ended up pulling some of the muscles around the site. And advil and a bit of ben*gay later, and I feel fine.

That’s what always gets me about having diabetes. The testing and shots are one thing. But the worry and unknown causes my brain to go places it doesn’t need to go is what is the hardest part of this condition to me. I did it to myself. In all my fear about the pump, the one thing that bothers me the most is the pain I caused myself.

Figures.

You look good...

2006-02-27T14:49:00.000-05:00

I work for a very small company. In all, there are 7 of us. Eight, if you count the guy that rents the spare office. Since we are so small, the medical employee benefits are questionable at best. Luckily I am fully covered by my husband’s insurance plan. With their plan, we are covered by 2 insurance companies. One pays X percentage, and the other pays most of the balance of the bill. It does involve faxing papers and keeping records of who has been reimbursed, but my Type 1 personality (thanks, Lyrehca) easily can handle that. I feel tremendously grateful for, not only for the intensely amazing husband, but for his pretty cool company too.

I think my company is worried at what would happen if I were to get pregnant. Cause you know, first comes love, then comes marriage, then comes….. an insulin pump, a renewed commitment to striving for great control, my slightly OCD personality focused completely on diabetes, and a trip to Italy (random but true) and then maybe a baby…

But they don’t know that. So, Mr. President decided to bring in someone to offer short term disability and a host of other additional insurance plans. SCORE! Short term (STD) would be a huge help for me to add to my insurance artillery. I eagerly signed up to meet with the insurance guy. And when he arrived, indeed, he was exactly what I pictured as an insurance salesman. Middle aged, balding and moderately overweight. Because I’ve been down the insurance road before, I immediately offer up my diagnosis and tell him to feel free to skip the spiel for everything but the STD.

He looks at me like he is not sure whether or not to cry or run from the room in fear.

"YOU have diabetes? You must be mistaken."

“Um, no, I’m pretty sure of it. Type 1, almost 25 years, healthy as can be, I can provide my A1c results as proof, if needed” I say with a smile on my face. “So, short term…”

He looks like he is going to say something, so I stop talking.

"WOW, you look good, for, you know, a diabetic"

(Oh, God, I feel a “my great aunt melba died from diabetes” story coming on)

“I mean, just look at you. You’re…. well, you look… well, healthy……. for a diabetic”

Never. Never in my life have I felt the overwhelming urge to attack another human being. What did he expect? Should I be limbless, blind and sickly? Should I not even be allowed to work
because of the “illness”? How ever do I live day to day?! I was appalled. Trying to hold back my innate sarcasm and utter distain for this man, I said “yep, I’m probably the healthiest person here” So, what do I need to do for the Short Term.”

“I feel badly but, sorry lady, people like you, um, you don’t pass our minimum heath requirements”

I got up from the table, and walked back to my desk.

People like me….. Minimum health requirements?

I submit, Exhibit A and Exhibit B

24 years and going strong living with diabetes, healthy, happy, and loving every moment of life, all the while, feeling sorry, for people who just don’t seem to ever have a spark in their eye or spring in their step. While challenging, my diabetes is a part of my reality and my life, in a word, is awesome (in the truest sense of the word)

So, look again Mr. Insurance guy, the only guy I feel badly for in this room, … is you.

T minus 16 H

2006-02-27T10:14:00.000-05:00

The “pump lady” FINALLY called me Friday to let me know that I was scheduled for the class on Tuesday and that Dr. Fabulous wanted me to do my saline start the same day. I wonder if he thinks I will back out and change my mind…. So tomorrow I get hooked up with Bonnie. (yes, I named my pump after Bonnie “Blue” Butler from Gone with the Wind- my favorite movie.)

Do you see the resemblance?

I know it will be better to just get it over with and get on this thing. Millions of PWD can’t be wrong, right?

emergency?

2006-02-24T10:05:00.000-05:00

Last night I get a call, from a number that I recognize as being from Joslin. Phew! Thank God she is calling me back….Hello! Hello? and then I hear…

“This is an automated appointment reminder for K..A..R..E..N... for Tuesday February 28th. Class begins at 1pm until 5 pm. Please sure to bring…..”

So I wait, there must be a way to press a button and get to a live person…. I try 0 and get “Joslin is currently closed, If this is a life threatening emergency, please hang up and call 911”

The good news is that I am signed up for the next step class. And, well, I guess that’s it for good news.

What do you think constitutes a life threatening emergency, and do you think they'd call me back if I had one?

One ringgy dingie

2006-02-23T11:29:00.000-05:00

The phone.

I really don’t like the phone. Until recently, I avoided making phone calls (other than for work) at all costs. When planning my wedding, if a vendor did not have email, I would not hire them. Strange, I know. But within the last year, my phone phobia has started to drift away. So clearly, I understand about people who don’t like the phone. But this is getting ridiculous.

Oh, the esteemed Joslin clinic, as the infamous Paul Madden would call it “THE Joslin”, the Diabetes Mecca, and apparently, a haven for those who don’t like the phone. I am trying to be a good patient and “work the system.” I know I have to sit in a room full of people who don’t know the difference between the CHO in peanut butter and a plate of fruit, and would choose the plate of fruit if given the choice because it’s “healthier.” I know that I have to take the baby steps in place because it’s policy and as my husband says "I have to learn to play by the rules." But honestly, if I don’t get a call soon, I will put myself on the pump….

“Hi, my pump will be here Friday, please call me and let me know what the next steps are. Thanks so much”

days pass…

“Hi, my pump is here and I am excited for the next steps, please give me a call so that I can get the needed appointments”

days pass...

“Hi, I read on the website that you offer your pump class every other Tuesday, just wanted to find out when the next one is so I can start this process’

And then finally, I email my doc. He is fabulous. He has seen me on a moment’s notice when I was at Joslin for another appointment, to “save me the trip” and who has bought me Starbucks when I had to wait too long to see him. (This is where the hubie get's the impression that I don't play by the rules) The doctor, in turn, emailed the pump coordinator who called me.

“I did not get any of your voicemails, please call me so we can schedule you for a class”

So I happily call her back, AGH! Voice mail.

So I call the Adult Diabetes Nurse, “I don’t do pumps, try this person…” AGH! Same voice mail.

“Hi, just returning your call, please call me, or email, email works, anything really. The number again is …”

sigh…

So I sit and wait. Patiently, by my phone.

Anticipation

2006-02-21T17:33:00.000-05:00

It’s really that anticipation that get’s ya. The ups guy came in and dropped off my 1ft x 1ft square brown box, along with a desk one of my colleagues ordered. (I didn’t really care for the desk) And just like that the pump was here. I waited till I got home to open it (admittedly after a glass of wine) just incase it was a bit overwhelming.

I looked at the packages and boxes. I was intrigued that the packing peanuts are the kind you can wet and they disappear. My husband was intrigued that the minimed offices are right down the road from his corporate headquarters. You know, incase he needs to send someone to “get things done” in person… not sure what exactly he thinks will happen. But it was cute to see him get involved. After all of the boxes were opened and on the coffee table, all I could think about was that I didn’t get any of the IV prep that they said should be in the package. No panicky outbreaks, no tears or nerves. Yup, that was a blue minimed 715 insulin pump. Just like the one I ordered. After we inspected the contents of the box we found a corner of our living room and put the pump away.

I was amazed at how easy it was, how less scary the whole thing was, once my pump was here. Of course, those infusion sets are still nicely packaged and no where near by body- so like everything in life, my attitude may change.

It begins.

2006-02-17T12:29:00.000-05:00

I don't know life without the betes.

My mom said she knew something was wrong with me, but it was not till her 6 year old little girl ran past all of the presents that Santa brought and actually emptied the water dispenser on the fridge because she drank it all, that she was able to do something about it.

I was diagnosed with type 1 diabetes December 26, 1982. I remember going to doctor Ederidge's office- he always had plenty of Highlights Magazines to look through while we waited. I loved highlights; there were puzzles and fun stories about all of the cool things you could do as a kid. I can remember being in the office, and my mom sobbing asking how long I had to live. (we've learned a lot about diabetes since then) I was quickly escorted back to those fabulous highlights magazines while mom "talked with the doctor."

Against the doctor's advice, we stopped home on the way to the hospital. Mom wanted me to have my new jammies, the pink ones with the feet, and I wanted to get my roller-skates which Santa had just brought to me. I was actually kind of excited that my older brother didn't get to come "meet the nice people" where we were going, but I was upset that it turned out that I could not bring my new roller skates.

I don't remember much else except being very excited about the tub of goodies that they gave me to distract me from having blood drawn. "You mean I get to keep the baby powder and these groovy non-skid socks?" I passed out shortly after that, and life was never the same. But you know, when I think about it, I could not fathom what my life would be like if I had not spent my Christmas vacation of 1982 at Strong Memorial Hospital.

By all accounts I "adjusted" to life with diabetes quite well. I attribute that to the fact that I am a Barton Girl. Tried and true, even down to my red cross tattoo on my bum, my best times growing up were at camp. Somewhere between the camp dances and moving from a green cap to a blue cap in the pool, I managed to learn how to treat a low and what the difference was between NPH and Lente. I also learned all sorts of tricks about living with diabetes (how to drink and not pass out from a low, and how/when to tell a boyfriend about the 'betes) I always said that having diabetes has brought me to some of the best experiences and best friends in my life.

Yet here I am, almost 24 years later, scared to death. You see I am checking out the window every 5 minutes waiting to see the UPS truck (both FedEx and DHL have passed by within the last few hours for anyone keeping track.) My MiniMed 715 is supposed to arrive today. The big day is compounded by the fact that I've tried the pump before. I am one of those few people that didn't like it. Granted, I was in college at the time so that may have contributed to the feelings, but that makes this time just a tad bit harder. But with a half forced smile, and a positive attitude I know that this time will be different. This is a means to an end, and that end being a beautiful, healthy, not weighing more than a Thanksgiving Day turkey, baby. Not right away, in about a year or so, but I’ve never let diabetes stand in my way and I am certainly not going to start now. So I am going on the pump at the recommendation of my doctors, fine tuning my A1c, so that when my non-diabetes side of my brain agrees with my husband’s, we won’t have anything standing in our way. (although, I always joked that I will know that God has a sense of humor if I have fertility issues….so we’ll see)

I finally got around to making my own blog after reading so many of the great OC pages. I’m not sure that anyone other than myself will be reading these pages, but it makes sense for me, to throw all of the questions out there, cause it’s not doing any good bottled up inside…

For all of those who I've anonymously read, I thank you for putting your thoughts and feelings out there to comfort those who you will never know were benefited.

So here we go…. As soon as the UPS guy gets here …