Tuesday, March 30, 2010

Taking Diabetes on the Road

Update on Dexcom: Despite sitting in a bag of rice for 26 hours the receiver has not dried out. I'm going to call Dexcom and order a replacement receiver. I miss it too much! I woke up feeling fine and tested to learn I was 63. Dex would have alarmed and woken me up!

Last week Steve had Friday off so we decided to go on a last minute road trip. We planned to be gone just one night so I didn't have to pack as many  diabetes supplies as I did for Vegas.

We packed up the car and headed down I-95 South on our way to Charlottesville, VA.

The drive was fun, but long since we decided to explore and take back roads. Once we got to Charlottesville we needed to walk around. We walked around the downtown mall and then drove around the town trying to find a hotel. Once we found one we had an amazing dinner and came back to the hotel to watch movies.

On Saturday we woke up early (for us) got some fresh fruit from Whole Foods for breakfast and drove over to Monticello, Thomas Jefferson's home. We walked around the gardens for a bit before our tour started.

Halfway through the tour of Jefferson's house I started to sweat like crazy. Then I started to get a little dizzy. I pulled out my dexcom and saw I was in the 70s with the arrow pointed straight down. UGH. I disconnected my pump and hoped the tour would be over soon. There was no food or drink allowed during the tour. Luckily the tour was almost finished and as I stepped outside I fumbled around and downed I don't know how many glucose tabs. Several minutes later Steve and I were able to get away from the group I tested and I was in the 60s. I must have been super low if I was only in the 60s after  bunch of glucose tabs!

 Once I was ok Steve and I got on the shuttle bus down to our car and we drove over to Michie's Tavern for lunch and a tour of the tavern. Next we headed over to Ash Lawn, James Monroe's house for a tour.

After the tour we went to Kluge's Winery to taste some wine and cheese. We split a flight of wine which was a good thing since we had a 2 1/2 hour drive home.

It was a fantastic weekend and even better since we had Sunday at home to run errands and relax. The only time the big D was an issue was my low at Monticello. I love road trips!

Monday, March 29, 2010

The One Where the Dexcom Goes For a Swim

I'm pretty upset. You see last night I was tossing and turning. At 2:45am I tested and was 256.  Bolused and then tried to go back to sleep. Finally at 5am I give up on sleeping and come out to the living room, curl up on the couch with my laptop and attack my Google Reader. I tested at this time and was 226. Bolused again. A little before 7am I am exhausted so I sneak back into the bedroom not wanting to wake Steve. The room is dark and I'm out of it. Recipe for disaster.

Without really looking I drop my Dexcom receiver on what I thought was the bedside table. In fact it fell into a half full glass of water. "Thunk". Oh crap. I reach in and yank the receiver out of the water hastily remove the pink cover and start shacking it to get the water out. Edge of bed is now all wet. After shaking it for a minute or two I check to see if it is still working. The reciever says my blood sugar is 212. Crap. Well at least it is working.

I crawl into bed and close my eyes. Oh sweet sweet sleep. Yet I can't sleep. Better check on the receiver and see if it is still working. ARGH. It is totally dead. I start shaking it and more and more water is coming out. I keep shaking it until all the water is out. At this point Steve looks over at me and asks what is going on. "Dex just wanted to go for a swim" I tell him.

At this point panic sets in. How am I going to manage my diabetes with out it? I'm going to have to test every 15 minutes so I can figure out what direction my numbers are going. Oh. My. God. AHHH!

Reality (and sanity) comes back and I realize that I can do this. Yes, I may be testing a lot more but that is totally ok. I can do this.

Dex has become such an integral part of my diabetes management. It helps me figure out what part of the day I run higher/lower, gives me piece of mind knowing that during the middle of the night if I go low Dex will sound his alarm and wake me up, it is a piece of the tool pie I use and rely on to manage my diabetes.

Can I do it without Dex? Absolutely, it is just harder.

I spoke to Dexcom and they said that they've never tried it but have had customers who say it'll start working after drying out. Thanks to twitter advice I have it sitting in a bag of rice drying out. I'm going to give it 24 hours and if it still doesn't work then I am going to have to order a replacement receiver for $299.

I'm bummed about loosing all the data that is on there. It is very helpful to my endo to see my dexcom data.

My poor fingers are in for a rough few days. Crossing my fingers that my numbers cooperate.

Wednesday, March 24, 2010

Living with Diabetes Day

Jess over at Sauceyredhead and I have been talking on twitter about an idea I had: Living with Diabetes Day. 

Back in the summer of 2007 4 members of Congress participated in the American Diabetes Association's Day with Diabetes. I was working on the Hill at the time and thought it was a great idea to have some of our legislators experience first hand what it is like to live with diabetes, especially when they are deciding on funding for diabetes research.

Over the past few weeks I've been thinking how important it would be for Steve to have a better understanding of what it is like to test before eating anything, to see how the foods affect you. Of course he sees me constantly testing, bolusing, counting carbs, treating highs and lows. He helps me count the carbs I'm eating. He is pretty involved in my diabetes care. Despite all that he doesn't know what its like to have a pump attached to him 24/7 or testing all the time. So why not have it try it out for 24 hours?

Many parents of children with diabetes have practiced giving themselves shots or worn an insulin pump with saline. I think it provides a lot of insight for the parents.

So here is the idea... get a group of bloggers together and have their significant others, themselves if they are parents, or friend to try living with diabetes for a day. Afterwards the blogger would write about their thoughts and the significant other, parent, friend would write about their experience and thoughts.

If you are interested in participating tweet me @adde9903 , leave a comment here, or send me an email at livinglife.diabetes@gmail.com

Tuesday, March 23, 2010

Symlin Update

As promised an update on round 3 with symlin. For a recap on my experience with insulin read about it here.

I've been using symlin for the past month. Overall it has been great. The big side effect I dealt with in the past was nausea.

Nausea was the single reason I quit the trial the firs time around. The second time around I would have a nausea for the first few days of each new dosage. This time... no nausea. Well, that was true until this past weekend when out of nowhere I started to have some nausea. On Saturday Steve and I went out to breakfast but after eating left felling like I had swallowed an entire cow and felt nauseated for the next 2 hours. Sunday it was the same deal after brunch but this time it only lasted about an hour. Since Sunday I haven't had any nausea. Weird, huh?

Dr. A was concerned about going too low after eating so she only wanted me to go up to 30mcg before each meal. At my appointment with the PA/CDE she had me go up to 45mcg and change my carb to insulin ratios.

Immediately after eating my numbers are pretty good. In general my biggest problem is 3 hours after eating. the PA/CDE said that that is a result of basal issues but I'm thinking that when I have a carb-heavy meal I go up 3 hours after eating.

I'm using less insulin overall with is a big reason why I wanted to go back on the symlin.  So far I'm really glad I'm using symlin.

I see the PA/CDE in about 2 weeks and I'm hoping she'll let me raise my dosage. I'm reluctant to raise my basal anymore. As it stands I'm already on a ton of insulin and needing to refill the reservoir every 24-36 hours. Yeah. It stinks.

Monday, March 22, 2010

Diabetes meet Vegas

As I mentioned in this post Steve and I were off on a long weekend trip for his 30th birthday. I surprised him with a trip to Vegas where my best friend S and her husband J were meeting us. All of us, except for Steve had never been.

We got there around 10pm Vegas time which was 1am for us. First thing we did after checking in was go to Margaritaville for a late dinner and margaritas. I opted for a Pomegranate Margarita and bolused. I ended up running high the rest of the night. Didn't have another margarita the rest of the time I was there. And I love margaritas!

I was prepared for lots of walking but boy oh boy was it tough on my feet but awesome on my numbers! We ate a lot but it didn't adversely affect my numbers which I was so happy about.

I had one of those I can't believe I'm doing this moments when I got low as Steve and I walked through Casino Royal. They have $1 margaritas so Steve went in to get one. As he was paying I felt like I was dropping, fast, so I checked out my Dexcom and low and behold I had a downward arrow and I was already low.  We were walking to the food court in the back of the casino but I needed something quick.

I grabbed Steve's margarita and took a few sips. Yes, I used a margarita to help raise my blood sugar. Not my finest moment but whatever, it worked. Especially since Steve was in the process of grabbing me some food and juice.

It was a great trip! I'm so glad we went despite my sore feet and blisters.

What crazy things have you done to raise your blood sugar during a low?

Friday, March 19, 2010

The Shaky Hand

I need to post about Steve's surprised birthday trip last weekend to Vegas but I couldn't let today go by without a post in honor of a person who means the world to me.

A year ago today my dear grandmother, Nonna passed away in her sleep after battling COPD. My mom rushed down to Mexico to be by her mother's side and was there when Nonna died as gracefully as she had lived.

Nonna and I had an incredibly special relationship. She was  a second mother to me. Nonna shared her love of all things Italian, cooking, learning, decorating, politics and history among many other things. She and I could spend hours on the phone just talking about anything and everything. She gave me the best advice.

In all honesty, this post is a lot harder than I thought it would be for me to write. Sadness is overwhelming and making it a little harder to breathe.

Nonna was a big part of my diabetes care.

The summer after my diagnosis Nonna took me and two of my cousins (we are the three eldest out of 7 grandchildren) to Rome for the summer. You see Rome was her favorite place on earth. After her divorce from my grandfather, Lito, she moved to Rome with my mom and aunt while my uncles stayed in Mexico. She didn't speak a lick of Italian but learned it while my mom and aunt were in school during the day. She learned to navigate her way around Rome by walking all over the city every day in her stilettos. When my cousins and I were old enough she wanted to share her love of Rome with us.

This was the first time I had been away from my parents for more than a night since I was diagnosed the fall before. I remember waiting for our flight to leave for Rome and I was accidentally served a regular coke instead of a diet coke. Of course Nonna was freaked out by my high blood sugars but we survived the long flight. Although I remember her testing me constantly. Where were CGMs then?!

While in Rome she carried around a big bag full of all my supplies including a scale. At every restaurant she would carefully measure my food at the table much to the embarrassment of myself and my cousins.  We managed just fine. Despite all the gellato I missed out on that trip!

At age 12 when I went on the insulin pump my mom was still putting the infusion sets for me. I had had a difficult time giving myself shots but finally learned. The bent-needle infusion set was too much for me to handle. Soon after I started the pump I went down to Mexico to visit Nonna for the summer. I remember sitting on the couch in the library/den and my mom was showing her how to set the pump up and change sites. I wiped the alcohol swamp on my abdomen and my mom handed the bent-needle infusion set to Nonna to put in me. Seeing the steel bent needle shaking in her hand set me over the edge and I snatched it away from her and stuck it in myself.

"You did it!" Nonna and my mom said.

Nonna's loving shaking hand has motivated me ever since.  I don't know where I would be had it not been for Nonna. Her shaking hand helped me take charge of my diabetes care. Words cannot express how much I love and miss her. She meant the world to me and I am so glad she is no longer suffering but I do miss her. A lot. 

Wednesday, March 10, 2010

Traveling with Diabetes

Tonight Steve and I are meeting at the airport and taking off on Steve's 30th Birthday Surprise Trip. He has no idea where I am taking him. Since he doesn't know where we are going I need to do his packing. He's going to pull out some of the basic (boxes, undershirts, ect) but I need to do the rest for him. He is a lot easier to pack for then me and my plethora of diabetes supplies, clothing, and shoes.

We are only going to be gone for 4 nights and 4 days so I won't need that much extra supplies but you can never be too careful.

Diabetes supplies for the trip:
My supplies include:
  • Meter
  • Back-up meter
  • Batteries (for pump and meter)
  • Test strips
  • Alcohol swabs/skin-tac
  • Medical tape
  • Pump Resivours
  • Infusion Sets
  • Novolog insulin
  • Lantus insulin for emergency
  • Syringes 
  • Symlin
  • Pen needles
  • CGM (Dexcom Seven Plus)
  • CGM Sensors 
  • Dexcom Charger
  • Pump (of course!)
  • Glucose Tabs (ugh, hate them but easy to travel with)
I am so excited for this trip I can hardly contain myself. It has been so hard keeping this a secret from Steve for as long as I have (bought tickets 3 months ago but have been planning for at least 6 months.) I hope my diabetes cooperates with me during this trip!

What supplies do you take with you when you travel?

Tuesday, March 9, 2010

Kickin' D-Booty

As I have mentioned before I am working my booty off to get in better control. Last week I was feeling burned out. After several days of having numbers higher then I wanted for no real reason I noticed I was starting to fall into old, bad habits: eating without testing, not testing as much, ect. Luckily, I was still giving myself insulin for the food I was eating and I was still testing 6 times a day. Nonetheless, slowly I was slipping back into bad habits.

I saw the Physician Assistant/CDE on Friday who made some basal and carb-ratio tweeks. Seeing her motivated me to get back on the horse and forge on.

Last week I was feeling like Diabetes was kicking my booty. The tide turned on Saturday. I woke with a blood sugar of 98 mg/dL and stayed right around there all day! At lunch I went down to 65 mg/dL but did pretty well after lunch. Although I did go up to 157 in the evening but came right back down. My average blood sugar for the day was 102 mg/dL!

Each time I tested Steve and I would high-five each other. He helped me counting carbs at lunch and dinner and went on a walk with me after lunch and after dinner.  I went to bed eeling like I won the battle that day.

As PWD we spend our days with diabetes constantly on our minds. Sometimes it is the center of our thoughts other times it is in the background but it is still there 24/7 and it can be very taxing. Days like Saturday prove to me that I am doing the right things and I can do this.

I love kickin' D-Booty!

Wednesday, March 3, 2010

Scaring Patients into Compliance

Has your doctor ever scared you into taking better care of yourself?

When diagnosed with diabetes patients are bombarded with all the complications that come with diabetes: heart disease, eye disease,  nerve damage, kidney disease, amputations ect. In the wake of diagnosis PWD can forget to listen when their doctor says that they can still live a long fulfilling life. After a while the scary complications can be forgotten or ignored since complications arise after long-term high blood glucose levels. At least, this is my experience/opinion.

When I was a teen and trying everything I could to gain my independence I just stopped taking care of myself. Of course, I did enough to keep me out of the hospital but testing was rare and I could careless about what I ate.

My parents tried everything: grounding me, showing up at a friend's house who was having a sleep-over when they saw I hadn't taken my tester (wow was that embarrassing!), yelling, trying to reason with me, everything. At one point the endocrinologist who diagnosed me talked to me about his cousin who had diabetes and lived in Columbia. He was on dialysis and begging me to take care of myself so I wouldn't end up like him. Finally at one point my parents took me to a psychologist who had experience with PWD.

I remember clearly the day the psychologist told me I was committing suicide because I was not taking care of myself. She threatened to commit me to a mental institution.

That did not go over well. To this day I wouldn't say I was trying to commit suicide but I do understand the frustration my parents and doctors felt with my non-compliance.

For a brief while the scare tactic worked but it did not last. Apparently, I am not alone in having scare tactics only work temporarily. Yesterday on MSNBC.com there was an article about health threats and how they only scare the patient into compliance for a short amount of time. You can read the article here.
Forty-seven percent of doctors surveyed by Truth On Call said that patients' good intentions only last a matter of weeks after a dangerously high blood pressure reading.

47 percent! Truth-be-told this does not surprise me.  The thing about diabetes, at least for me, that can make the long list of devastating complication fade into the background is the fact that complications don't arise after one or two high blood sugars.
When I test and see a number in the upper 100s or 200s I don't think oh my eyes! my kidneys! but after days of highs I do think damn this isn't going to help stop the progression of my mild/moderate retinopathy.
This article was an interesting read and really made me think about how I approach diabetes complications. 
What about you? Did this article make you think? How do you think about complications in your diabetes care?

Monday, March 1, 2010

A Wee Bit of Frustration

By no means am I the perfect PWD.  In the 21 and a half years I've had diabetes I've gone through periods of not testing, not paying attention to my diabetes and only doing enough to stay out of the hospital. Hell, I was even "fired" by my very first endocrinologist, Dr. H, for non-compliance. There have also been periods where my A1c rocked and I was doing everything to keep it low.

During the periods of not taking proper care of my diabetes  it was never once about not knowing what to do or having the resources to do what was needed. In fact, thanks to all my mom's work I probably have way more resources at my disposal than most PWD.  Everything I needed was always right there.

In October when I started seeing my new endo, Dr. A. While Dr. E will always be there for me if I ever needed anything is always just an email away from helping me out I came to realize I needed to have an endo who was local and not 3,000 miles away. So off I went to Dr. A and got my A1c. I was a bit shocked at my results: 10.2%

Dr. A told me it was ok and we were going to work together to get it down.

46 days later it was down to 8.1% I was so impressed with myself. I figured that in 2 months I would have it down bellow 7% no problem

Except it didn't go down that much. About 10 days ago I saw Dr. A for a follow up. Before the appointment I checked my 90 day average on my meter and had an idea what my new A1c would be so I wasn't as shocked/upset by the news. 7.9% I told Dr. A that my guess was I would be 7.8% or 7.9% so I did a decent job guessing.

I know that I should be thrilled that in just over three months I went from 10.2% down to 7.9% but I am just not satisfied.

Now that I'm unemployed my days pretty much revolve 99 percent of the time around diabetes. In some ways it is fantastic but it also makes these highs I keep having just that much more frustrating. Sometimes I know why I'm high and there is a good reason. Other times I have no idea.

On Saturday Steve and I went out for an early dinner of tapas before heading to the movies to see Shutter Island. Before eating I was 106 so I bolused for my meal and took my shot of symlin. 2 hours after eating I was 106. Perfect!!! An hour later, during the movie, my Dexcom alarms saying I'm over 200. I test and I'm in the 250s.  I do a correction bolus and get back to watching the movie. (Good movie by the way!) A few hours later I'm back down in the 130s before bed.

I'm trying so hard for that A1c bellow 7%. My goal is to have it there when I get it tested again in May. It is just days like Saturday that get me frustrated and feel like throwing in the towel. Of course I realize I can't do that but sometimes it sure does sound appealing.

On Thursday I'm seeing the Physician Assistant/CDE at Dr. A's office. Hopefully she'll help me figure out why I am going up 3 hours after eating and how to help prevent it.