Monday, January 04, 2010

Really- Almost 2 years?

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.

Tuesday, June 12, 2007

The dorkiest thing I’ve ever done…

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…

Thursday, May 10, 2007

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

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”

Wednesday, May 09, 2007

“Oh my friends have had lasiks” and other ramblings

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.

Thursday, April 12, 2007

Information Chill Pill

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.

Thursday, March 29, 2007

Meeting with the vampire

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?

Monday, March 26, 2007

What did I think?

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!