If there is one thing I wish I could tell you, it’s that my #WalkWithD is different every day. Or hour. Or minute. That’s why this initiative is so important. And if you want to learn more, go here.
I was sitting at the table with my cousins and friends in my too thin dress for the weather. But I had bought it just for my birthday and damn it, I was going to wear it. I grabbed the warmest sweater that looked good with it, and that’s what I wore. I was so excited and so determined to be happy for my birthday. I turned to my cousin and said, “is it getting really warm or is it me?” It was me and my blood sugar was dropping. The waitress came over for drink orders and even though I had a margarita and a water in front of me, I ordered a sprite. I was hoping it would come immediately (but didn’t think to ask to make sure it would), but it was getting hotter and hotter, so my friend went and grabbed sprite from the bar. (I had liquid glucose with me, but had forgotten to grab my bag of airheads, so was saving the limited glucose for later if it was needed.) A different friend came over with a shot for me, but I knew I couldn’t take it yet. I needed my blood sugar to come first. So I sat there with my sprite, margarita, water and shot through dinner. I couldn’t reach the food because of all the beverages. I felt ridiculous. Who lets a shot sit on a table through an entire meal? I kept looking at it. I’m not one who does a lot of shots in the first place, and here diabetes was ruining my chance. But! I knew more than anything else that I needed to focus on raising my blood sugar before I thought about drinking anymore. Low blood sugars + alcohol = makes me the most nervous. So I just kept watching it. Want to know the first thing I said when I was done with it? “That was really sweet!” All my friends were laughing at me and saying “too bad you couldn’t just use that to treat your lows!” We joked, and I laughed, and I wasn’t upset with their jokes because they were said with understanding and a hint of “diabetes would be better if…”
My drink choices that night were the shots, margaitas and ciders. Yes, I bolused for my food and one of my margaritas because I know that works for me. And because I was over 200 with 2 up arrows. I finished the night in the 100s and flat lining. I had my friends around me asking how I was every now and again. And as much as that might annoy me most of the time, I was happy to have people who realized this was the night I wasn’t going to be the responsible one, and knowing that they could take over if needed.
That’s not how I wanted to make diabetes my own, but my hand was forced. Living with diabetes means that plans & schedules & timing somtimes have to change. And even though it might not be what you want, there is a way to make it work. And when I think back on my birthday as a whole, waiting to take a shot is not what I remember. It’s the friends and family and acquaintances who came out and hugged and laughed and smiled with me.
I’ve been absent. Only blogging though (at least I think).
To say that this summer has been a roller coaster would be a large understatement. I’ve been changing goals, changing how I reach goals that have stayed the same, enjoying & embracing the time with family and friends. I’ve been diligent in my Dexcom use, but only because everything else has been so out of control, that it was the only way for me to keep somewhat responsible in the diabetes world.
As I was thinking about how to explain this to you, in a more detailed manner, I realized it didn’t matter. There were experiences I wanted to share, but couldn’t. There were emotions I wanted to yell about, but realized it wouldn’t change a thing. There are ways to make decisions that need to be changed, but I don’t have the power to do it. There is family that is gone. Read that last one again.
My goal here is not to make you feel sorry for me. The thing is that with all of this SHIT that I’ve experienced, I’ve also realized that my life is so much more full than it was a year ago. I’ve spent more time with friends than I could’ve imagined. I’ve had more people to call after a bad day. I’ve had people say that they’re happy to be my friend, not just thank me for being their friend. I had a terrible vacation, which I was able to make look great through pictures, because I had friends who stepped in when all I could say was “I need to escape.” To the shy, scared, intimidated me of the past, this is a huge deal. It’s made dealing with all of this SHIT able to be dealt with. I didn’t even realize just how much I had been through until I went to send an email. I was asking for advice and then I explained everything I thought they might be able to help me with. It took me HOURS to write the email because I couldn’t stop sobbing. That day I realized just how great my life is.
I can’t tell you about diabetes because I honestly don’t know. I know that my blood sugar was high all the time during vacation; I also know vacation was the worst week of summer. Hopefully life and diabetes calm down soon. Until then, thank you: whether you knew you were helping or not.
We know that I can run. And far.
I kind of gave up running after the half. I hated how much it had taken over my life and I dreaded running (which is why I believe I will never run a half marathon again). In the spring I resolved to start running again and I did. I just couldn’t get any sort of distance because the shin splints were terrible. It got to the point where I would wake up with them, even if I wasn’t running. I resorted to kayaking as my workouts (so much more fun, but also more expensive).
I did research about ways to get rid of shin splints and one way I found was how you land on your feet. I decided it was time I re-trained myself how to run. Because let’s be honest, I love a beer tent at the end of a 5K. I’ve been focusing on form and only going short distances. This week I ran a whole 1.8 miles and yesterday I didn’t have to think about my form. It’s been frustrating and empowering.
And is it worth it? Absolutely.
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: