I know you’re probably thinking “what the what is with the ceiling fan Briley?” I totally get it. And it’s definitely not what I planned to write for you today. (I don’t often plan what I write, but I still have Florida stories for you.)
I could hear this music, and I felt like there was steam coming off of my body. I looked around my room wanting to see the steam. The comforter was blocking it. Then the music. What the hell was that music. I looked around and my eyes stopped on the ceiling. I was TERRIFIED. That ceiling fan and it’s shadows were something out of a horror movie and I didn’t know what to do.
The music was my Dexcom and I was LOW for at least an hour. I knew that I was low, but I laid there on my back looking at the fan (which was off) terrified to move. I knew I needed to test, but what would I find when I turned the light on? I laid there until my Dex went off again. I was finally awake enough to realize that whatever was going to hurt me from my ceiling was less important than sugar (still not realizing it was just a shadow). I turned on my light, looked at my ceiling and that crazy thing was gone. I tested, just to see exactly how low I was, and I was 45 (I’m pretty sure I was already on my way back up). I grabbed the tube of tabs next to bed and had all 6. I then set a timer 15 minutes to test again and I was in the 70s or 80s.
Today I woke up smelling like I had gone to the gym in the middle of the night and not knowing how to function without coffee. It scares me that I was that low for that long, and that my symptoms were so severe, when they normally are not. My Dex currently reads 80 with a flat line and I am trying so damn hard to be happy, but last night is still at the forefront of my mind.
This is my “day of #dblogcheck” blog post, and I hope that you participate (not for me, but for you!)
1. This date is a one and only event. There were other pieces of the conversation that made me realize I had no need to get to further know this person. We were talking about traveling. We had briefly talked about diabetes before, and I had already checked my Dexcom and bolused for my food. I mentioned how I went to a conference with a friend last summer, and that I’m going back this summer. He asked what kind of conference it was, and I said it was for people with diabetes. I couldn’t go into how important it was to me, because I wanted to focus on all the other aspects of my life. He asked me how old I was when I was diagnosed and I told him I was three. He responded with “How many people are born with it like you?” I was dumbfounded at the difference in three years. I know that I was little, but I also remember being in the hospital. I responded with “well I don’t know anyone who was born with diabetes, but a lot of people got it around the same age as me.” I have no idea how we transitioned to another subject, but I was very glad we did.
2. It was a second date, and he was already aware that I have type 1 diabetes. We hadn’t actually talked about it though. We were bowling and he asked what the string was. I had to think for a second, because I thought I had tucked all my tubing in, but apparently I hadn’t. I explained that it was the insulin pump and I got an “okay.” It was pretty amazing. He went on to say that one of his grandparents had type 2 diabetes and I prepared myself for a horror story, but instead he said “I think that’s different than your type? Can you explain it to me? I’ve tried to research it, but nothing is clear.” Can someone knoweldgeable please make an information sheet so that others who want to know this can find it? It may help diminsh the misconceptions that live in this world. I explained briefly how I understand the difference: type 1 is when your body stops producing insulin and type 2 is when your body doesn’t use the insulin properly. We talked a little bit more about shots vs. pump, advances in medical technology, BG tests and how long I’ve been living with it. There was no mention of a CGM because I was in the middle of a brief Dexcom break.
3. I thought this guy was nice. We had similar interests and even though I didn’t know all that much about him, there was nothing apparent to make me think I shouldn’t try to get to know him. I mentioned that I have diabetes and told me that it creeped him out. There are so many things I should’ve said, instead I just sat there with my chin on the floor and trying to stop the conversation as soon as possible. Yes, I could’ve educated. Instead I protected my heart & fear that diabetes could get in the way of a relationship (also realizing that if it did, this would not be a relationship I should be in).
(You will get a real MasterLab post from me at some point, but to start, I’m just sharing what I wrote & retweeted on Twitter that day. Please don’t hesitate to ask any questions about each tweet, but also realize I may not know/remember the information if it isn’t included in my notes. Also, I was focusing more on notes than twitter, so some of this may not make any sense to you.)
This was my favorite statement of the whole day.
After this I left MasterLab and sat on a bench outside in a zombie like state. Melissa carefully walked up and said, “Are you okay? Are you low or high?” My brain hurt with all the knowledge and I couldn’t believe everything I knew. (And I felt as though I might not have tweeted enough…)
I heard her words and I instantly felt the tears.
I replayed her words over and over and over.
I wouldn’t forget them; I probably couldn’t even if I tried.
I wanted to embrace her and let her wonderment meet my gratitude.
I felt guilty.
Within the last month I got my eyes dilated, but I had heard that the retinal screening at Friends for Life was worth getting even if I’m diligent with my doctor. I had also heard that pressure is measured, and flying can change the pressure of your eyes, so I scheduled my appointment for Friday, July 4. It was the first thing I did that day (besides coffee) and even though I had positive results last month, I was still nervous. I went through all the stations. “But you’re 28. How is it possible to have diabetes for 25 years?” I did the vision test, the look at the red x, the pressure, etc. All anyone kept saying was, “okay, go to this station.” Finally I made it to the end and had to wait to meet with a doctor. The last station had a flash (I assume this is where the pictures come from, but I cannot be sure.) I could not see anything other than the flash out of my right eye and I was freaking out. This clearly (to me) meant something was wrong. To see a picture of your eyes is totally freaky and AMAZING. She explained everything from all the different sessions; showed me how she knows my eyes have no pigmentation and “do you wear sunglasses?” She then looked for bleeds.
“After 10, 15 definitely 20 years, we expect to see bleeding. You’re at 25 years and you have NOTHING.”
I have a few reasons to think that I have lucky genes, and this enhanced that feeling. Knowing how common eye problems can be, and the amount of time in which the doctors expect to find bleeds, left me thinking that I’m probably not the first person to walk out of that room crying. However, I think most people are not experiencing happy tears. I texted Christel and Kerri, because I needed to share with people who would understand, be happy for me, and help me with my tears. The hugs I got were incredible. My lack of being able to speak without crying was a little embarrassing. People were congratulating me on 25 years of diabetes, and asking if I was okay. Christel told me not to feel guilty and to tell people. So I did. By the end of the day when one of the CDEs said “tell me something good,” I jumped and braced my feet and said, “are you ready?” It was the best thing that could have happened on my 25th dia-versary.
I had no idea which of these is the left or the right, but Kerri (or maybe the doctors) named the files. The only way I could “keep” my eyes was to download them onto a USB, and I didn’t have one with me, and assumed the price of one at the hotel would exorbitant. Instead, I stole Kerri’s, and she held on to my eyes for me and now I have them and even though I have no idea what I’m looking at, I just can’t stop looking. They’re so damn beautiful.
I woke up on Sunday morning with a line on Dex that had stayed steady at 300 all night (I turned off my high alarm at night during FFL because I was with roommates & the high alarm never wakes me up). As I was drying off my shower, I ripped the Dex site out with my towel. (This detail will be relevant later.) The meter confirmed that I was in the high 200s, so I bolused and went off to breakfast. It was the last meal with my people and I wanted to eat as fast as possible so that I could spend as much valuable time with my friends as possible. I had fruit and fruit and fruit, and waffles and bacon and maybe eggs? And another waffle. I enjoyed my coffee, but couldn’t get enough water. At the end of breakfast, I tested and I was nearly 500. I left to chug water, take a shot and change my site. By the time I left for the airport I was in the 200s.
I used curbside service, and TSA Cares, so I was through security within 10 minutes of getting dropped off (different post about that coming another day). I was exhausted, but I didn’t think anything of it. I found water bottles for the kids (Disney only sells ONE), and bought a sandwich (of which I picked up the person in front of me’s). I ran into Karen & Pete and told them about the delicious sandwich I thought I had ordered, and off they went to get the same. I found my gate, sat down to test and I was 71. I had no idea how much insulin I had on board OR where my blood sugar was headed, but all of a sudden I felt seriously low and I was scared out of my mind.
I ate something (low treatment) and texted Karen. Their flight was taking off after mine, so they came to sit with me and Karen shared some of her low stuffs with me (which were delicious & not eaten while low). I ate my sandwich, they sat with me, they kept me company, and then, after I was 102, let me go to the bathroom WITHOUT my luggage! (I love traveling, but taking everything to the bathroom drives me nuts.) We watched a storm roll in, and off they went to their gate. At that point I knew that I wasn’t in danger, but earlier I did not. This community rocks, and people prove it day in & day out.
Last, but certainly not least:
Last year at FFL I attended every emotionally beneficial (to me) session. Each night, talking to my friends, they would tell me about FDA this, or Bionic Pancreas that, or basal/bolus solutions and I was all “I talked to people.” Don’t get me wrong, I loved it. But I wanted to learn this year. I wanted my head to hurt from the knowledge, and let me tell you, it does.
Here is what I knew when I went into this session:
- Everyone loves it.
- You wear 2 pumps and a CGM. One is filled with insulin and one glucagon.
- The participants could do anything without worrying. Exercise, food, etc.
- They were encouraged, if not required to eat a high fat/high carb diet. These are foods that are the hardest to work with, so how would we know if it’s actually working if we ate the perfect diet.
From the first moment I stepped into the room, I was captivated. Not only is Ed Damiano a brilliant researcher/developer, but he also is a powerful presenter. I tried to take as many notes as possible, and hopefully I can summarize this for you as well.
- This is not a cure. Read that on repeat. This. Is. Not. A. Cure.
- It’s a tool; it is a far superior tool to what we have now, but it is just a tool.
- The algorithm needs to know how to adapt to changes within the body, such as sickness.
- This is one of the only systems which doesn’t need to know about a patient’s current insulin therapy program. It only needs to know a person’s weight.
- The current iPhone device will only be used through the trials, it will not be a part of the final product.
- Beacon Hill Study: Average carb content per day was 260g (based on photographs of food anazlyzed by nutritionist at the end of the study)
- Camp Study (adolescents) conducted at Clara Barton Camp & Camp Joslin
- One kid rested his on top of a cinder block wall, and it fell in the middle. The sensor was still able to read and the devices were still able to work through the wall. (Awesome, even if not planned test)
- Graphs prove that patients are much more conservative with blood sugars overnight at home (couldn’t get a picture of all the slides)
- Home Study will take place in 2015 with a goal of Hypoglycemia 0-1% of time. (My gut reaction was “do you know how much weight I could lose?! All the parents at my table looked at me shockingly.)
- The goal of the home study is when the receiver will transfer to a dedicated medical device, and all be contained in one device:
The end of the presentation was a plug, because they have run out of money. If you fill a room with hope, and then tell them it’s over, you know they’re going to hand over everything they have. Keep in mind, I’m just me and love my life but am NOT swimming in money. The Bionic Challenge wants each family to raise $5000 by September 1. I have no belief that I will reach this goal. However, ANYTHING YOU CAN GIVE HELPS, and it’s tax deductible. If you are interested in donating to this amazing technology, I will send you the information on how to do it! (Did I mention work stops if they don’t reach this goal?)
- Is this system waterproof? Based on how it seems to work, it would never come off, so I assume yes. Can’t assume.
- How will this bode for my scar tissue? I know that Ed isn’t thinking about me specifically, but I know I’m not the only one with this issue, and is there a way to get around it?
I’m back from Friends for Life 2014, and there is so much that I want/need to write about. The “keep things organized” part of me wants to write them chronologically, but the heart & soul of me needs to write them as to what is in the forefront of my mind.
On July 3, we were celebrating my friend Melissa having diabetes for 24 years. Early in the day, we joked that we would pass off the anniversary. I didn’t actually think it would happen, because it would just be too perfect. I was social-butterflying my way through all the different groups of people in the bar (you can find this just as weird as I do, it’s okay). I found my way back to Melissa just before midnight and handed someone my phone and said “will you take pictures?” They said, “Do you want a video?” Replying no is the biggest regret I have of the whole trip. (If by chance someone has this video, PLEASE share it with me!)
I knew that it would be awesome. There were probably 10ish people around us (and the pictures Paige is taking show that). We held up the Dexcoms and all of a sudden everyone broke into song. Happy Birthday, but Happy Diaversary instead. Every single group from FFL that was in the bar started singing. It was incredible and completely embarrassing. I am pretty sure I ended up as red as my shorts. However, I also find the power of this community really hard to explain. I wish that this had been taped because it shows perfectly how awesome and big this place really is. It doesn’t matter how long I’ve had it, or how long they’ve had it, or how long the person they love has had it. They’re all in it and they all get it.
I remember sitting at the computer to see if anyone had left me message while my away message was up. It was July 4, 2002 and it was my 13 year dia-versary. I of course had written something about having diabetes for 13 years. I was expecting smiley faces and congrats and instead I came back to first dia-buddy saying “And we get to go home in just a few short weeks.” She was my first dia-buddy, and she’ll always hold that title, but we had already grown apart being in different schools. It was a moment when I knew that she’d still always be important.
On Friday, I will have had diabetes for TWENTY-FIVE years. There is so much about this dia-versary that has gone wrong from the start, and gone right. I always envisioned that I would spend this one with my parents, specifically my mother. Both of my parents always celebrated the anniversary, but my mom did the every day ins and outs of diabetes until I went on a pump. I wouldn’t be the person I am, or the person with diabetes I am, without all of her hard work for all of those years. If there is one thing to know about me, it’s that I am a huge family person, and I’m missing a huge family party next weekend. There are ways I could’ve been there, but it would have interrupted FFL, and I just don’t think that interrupting this experience will help. After last year, my parents were going to come to FL this year, but it just couldn’t happen.
Now that I’m about to get on a plane though, I feel as though I am going home to celebrate. Sure, there will be a few people left behind in New England who understand, but EVERY person I will be with in Florida understands. I know how I feel about this, and my box of tissues is packed, but I am at a loss for words. This feels right. Friends for Life was not my childhood, but it has been a huge part of my adult life, even if I’ve only been once. I want to say thank you to those people who have already made this week amazing, even though I’m still sitting in my apartment. Mostly Christel, Kim & Kerri.