I’ve said several times before that I really don’t know people in my “real life” with type 1. I finally had the opportunity to meet DOC member Amy in person and discovered how truly small the world is (we found out that she’s known members of my family longer than she’s “known” me!). When I read today’s prompt directly followed by some tweets about diabetes in the wild, I thought back to a day… not my most memorable day with diabetes but one worth sharing.
Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)
I was diagnosed with diabetes in the middle of August 2011. My husband and I moved to Cleveland in September and that October we were shopping at Crocker Park (an amazing outdoor shopping center). I wasn’t yet on an insulin pump but was in the process of getting started with one.
Brad and I had finished our shopping and were returning to our car in the parking garage. When we reached our garage, there was a group of three teenagers talking and laughing in the stairwell. The girl who was sitting on the step scooted over so we could walk past, as she scooted I saw it. It looked like a purple pager clipped to the outside of her pocket with a clear tube sticking out of it.
I wanted to exclaim, “I have diabetes too!” but the calm, rational adult in me reminded me that having a stranger point out your medical condition as a teenager could possibly mortifying, so instead I smiled and said thanks to her when we passed.
On the second level of the parking garage, when we were safely out of earshot I turned to Brad and said, “That girl on the steps has diabetes too and she was wearing an insulin pump.” He hadn’t noticed.
I learned two things that day:
1. There were other people in the world having “normal” lives while having diabetes. I hadn’t yet achieved a “normal” life since my diagnosis.
2. It’s completely possible to for the condition that had taken over my life to go completely unnoticed by others.
Sometimes I wish I had said something to the girl in the stairwell, especially after moments when my insulin pump being visible helped others feel less alone.
Other Memorable Days:
Today’s D-Blog Week topic is about petitions. Here’s the prompt:
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)
This prompt inspired thoughts not related to writing a petition but about the fact that we shouldn’t need them. Not that long ago, a petition to standardize TSA screenings for people with self-monitoring medical equipment failed to reach the required number of signatures to move forward. This disappointed me. I wrote about my experiences flying out of Cleveland with TSA and the multiple refusals to be scanned, and the not terrible pat down. My security experience flying out of Seattle was in some ways worse and some ways better. Had the petition been successful in its goals, the overall flying experiences of people with diabetes would be better, but we shouldn’t have needed a petition in the first place.
The travel story:
Are you ready to be scared? I again turned down the body scanner at the airport and respectfully requested a pat down. I again received the “it’s totally safe lecture” this time a little more sternly. I was then sent through the metal detector, didn’t set it off and TSA agent number two was about to just let me go about my business when Agent #1 yelled, “she’s wearing an insulin pump!” Read the rest of this entry
Last year, I double-timed it for D-Blog Week. This year, I’ll see what I can do.
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)
When I go to any of my doctors, I feel like I turn into “super patient” and answer all questions precisely as if I’m being tested and just let the medicals lead the appointment. I’m married to a man with “white coat syndrome” so I know that’s not my issue, my issue is that I need to take control of my appointments. I did better at my last endocrinologist appointment, when I started a sentence with “while we’re talking, I need to ask you about travelling.”
I try to schedule my appointments online so it’s handy that I can type into the comments/reason for appointment box what I need to talk about and it ends up on my chart… whether or not that gets seen before I do, I don’t know.
Look at that! I’ve already strayed from the prompt!
What I wish they could see.
I wish they could see the life around my numbers. I mentioned about a year ago that I had an issue with a resident fixating on a string of low numbers and kept trying to change my basal programs to avoid them and somehow she didn’t understand they were outliers (because three days with lows in a row couldn’t be an outlier when you’re painting an entire house!). I explained over, and over, and over that those were not normal numbers. At that very point in time I wished I could snap her back to those days movie style so she could watch not only how active I was, how on top of treating those lows I was.
I wish that my healthcare team could see the things that I may not think to tell them about. I’m “new” at this whole living with diabetes thing and don’t always identify things they should know about. Although I doubt they should know about my sore neck from sleeping oddly, but I bet they should know about the tingly feeling in my hands that I only get in the mornings.
What I don’t want them to see. Read the rest of this entry
I know that yesterday I was nervous about security with my insulin pump. Of course when we arrived at the airport, they were sending everyone through the body scanners, so I politely requested the pat down from the TSA agent. She made three attempts to convince me to go through, “it’s radio waves. No more than using a cell phone or microwave,” she told me.
I explained that since it’s my health, I would like to be on the safe side and be patted down. After two refusals, she walked me over for a pat down. Overall it went very smoothly. She was fairly pleasant. I was offered a private screening and she explained to me everything she was about to do. Was is comfortable? No. Was it the worst thing ever? No.
While I was being close and personal with the TSA, she chatted with me about the weather and insulin pump. A family member of hers has had “childhood” diabetes for 33 years and uses “the newest insulin pump.” She totally understood the tubeless OmniPod and asked if I wore any other devices, so I showed her the Dexcom on my arm. She glanced at it and moved on.
So the verdict is that I survived. I basically got felt up and had someone’s hands in my pants (waistband). It’s over and I don’t have to go through it again for a week!
The Rules Read the rest of this entry
The nice thing about having online access to my test results is that most of the treatment decisions are made and communicated before I even make it to the doctor’s office.
A week and a half after getting my blood drawn, I went to see my endo. She had already advised me to start taking a supplement AND complimented my numbers via comments on my labs.
When I wound my way up to the endocrinology department I answered the standard questions from the nurse got weighed and then offered her my left arm for blood pressure, “If you don’t mind, I’ll have you do my blood pressure on my left arm since I have my site on my right arm.”
“You have your what?” she asked me as I shrugged off my cardigan.
“My insulin pump,” I explained and turned my arm to show her the OmniPod on my arm.
“So that doesn’t fall off of your arm?” she asked. I said no and that is stays put just fine. “So you like your pump?”
“Yes I do, I love that it’s tubeless,” I responded. Then it was like something dawned on her and she took a closer look at my right arm.
“Your pump is tubeless! So it has a cartridge in the white thing? How often do you have to change that?”
I explained that I wear an OmniPod and I fill each pod with insulin and put a new one on every three days.
“I know it’s stuck on there pretty well, but have you ever had one fall off before?” she asked.
“None have ever fallen off, but I have accidentally ripped one off my leg before.” She responded that it was interesting and finally took my blood pressure. Read the rest of this entry
Have you ever felt like you were forgetting something? I had that feeling all morning. I mentally checked off my list while getting ready for work. Contacts in? Check. Feed cats? Check. Put on deodorant? Check. Grab lunch from fridge? check.
I was almost all the way to the office before I remembered… I only put one set of earrings in. I keep meaning to bring a spare set to work and keep them in my desk, but I basically never forget to wear earrings. Today I’m sporting half-naked ears.
Our trash is still sitting on the curb. Between Easter observed on Monday and a solidarity, one-day walk-off among sanitation workers (supporting sanitation workers striking in another community), our trash was not collected yesterday as usual. It was still on the curb this morning when I left. I saw a garbage truck on our street so I’m hopeful. What happens when garbage sits on the curb for more than a day is a mess. Between people who don’t bag their trash and just put it in the can and people who only bag their trash and don’t use cans, there is unpleasant debris in the street. Not to be a whiner, but I hate picking up other people’s trash out of my yard.
It’s never okay to tear your spouse down on social media. Airing a frustration over your wife leaving the oven on for an hour after dinner or your husband forgetting to fold the clothes out of the dryer is much worse than the actual “infraction.” I know that a lot of people use social media to vent, and I’ve caught myself a time or two wanting to tweet about one of my husband’s annoying habits but it’s good to stop and think, “Do I really want to put this person, who I love, down in front of my friends and family?” The answer is probably no. Plus it’s easier to get past those things if they aren’t immortalized on the internet.
I’m afraid of potassium. When I was in the hospital when I was diagnosed with diabetes, everything in my blood was off including really low potassium. They gave me IV potassium and before I was discharged, I had to drink potassium powder mixed with juice (great idea hospital, make the person who’s just out of DKA drink juice). IV potassium currently holds the title for the absolute, most painful thing I’ve experienced. I’ve broken bones, had blood drawn what dehydrated, gotten a concussion, punctured my eardrum and has a spring-loaded canula inserted directly into a vein… and the potassium wins hands down. It was the only time I’ve ever thrown up from pain. The potassium powder drink was disgusting to drink as well.
Back to why I’m talking about potassium… My latest labs showed that my potassium was low-ish again. Knowing that I can do something about this immediately, I bought bananas. I hope to never need potassium in a painful way ever again.
A couple of my stories are featured on OmniPod’s blog, Suite D today as part of their Diabetes Foolishness series. People say and think the strangest things about insulin pumps, glucose monitors and the things that people with diabetes do to stay
In probably about 1 hour, this will just change to say: LOW
I have a spare pod in my purse and another spare pod in my desk here at the office, along with a vial of Apidra, so I’m not really being daring or living on the edge because I can just fill and affix a new pod whenever I need.
What’s going on here is that I’m getting a message. The past several pod changes have cut it quite close with the amount of insulin I have right there. I also think that LOW for below 5U is wrong, because I bolused 6 units on a pod that was reading LOW once… but that’s not a good normal for me.
Oh yes, back to the message. I need to start putting more insulin in my pods because I’m using more. My insulin delivery history has climbed slowly over the past few months and since both basal and bolus amounts are up, I believe that I’m not only eating more carbs but also requiring more insulin.
On the bright side, I know I’m not wasting insulin!
I’m a total baby when it comes to having blood drawn. It goes back to long before diabetes, but my panic over having lab work was exacerbated when I was dehydrated and having hourly draws nearly two years ago.
On Friday, I needed to go in to get regular testing done, including
losing giving 3 vials of blood and peeing in a cup (having diabetes is all fun and games, didn’t you know?). Because of Good Friday, I ended up with the afternoon off so I headed out to the lab. When I got there, I thought I’d have to wait for a long time because there were several people in the waiting area. I didn’t even wait 5 minutes, come to find out all of the waiting room people were waiting on people who were already being seen. I was the only one there on my own which was strange.
Anyway, Friday’s draw was by far the best experience I’ve had since I put into practice the things I’d learned from past bad experiences… and I thought I’d share my tips for anyone who might be a bit of a wimp when it comes to blood work… like me.
- If you are not required to fast for your blood work, don’t. Being low on energy then having blood drawn is a recipe for bad news. If your blood work is fasting, eat a snack before bedtime and go early in the morning. Take a snack along for directly after.
- Be well-hydrated. The more water I’ve had before a draw, the easier it’s gone. Dehydrated Rachel veins like to collapse and I end up getting poked more times than necessary. I gulped down 3 big glasses of water right before leaving on Friday and only had to be poked once. As a bonus, if you have to have a urine test as well, you’ll be prepared.
- Don’t think about it. When you know you have to go, think about something else beforehand. I have a horrible habit of psyching myself out beforehand. Listening to music on the way in and reading my Twitter feed in the waiting room helped a lot. Read the rest of this entry
I had heard of LEVEL Life glucose gels before and was curious about treating low blood sugar with gels. I typically treat with juice or glucose tabs.
When I received an email from Ethan Lewis, founder of LEVEL Foods who also has type 1 diabetes, offering me product samples to try and provide LEVEL Foods and the DOC with feedback on, I jumped at the opportunity. When my care package arrived with samples of each flavor (Mandarin Orange, Vanilla, Caramel and Strawberry Banana), it was really strange because I was kind of looking forward to having a low blood sugar just to try the products!
I had to wait several days to try the gels out, since I’m not in the habit of sabotaging my health with forced lows. I was out shopping with my friend and between stops, I checked my blood sugar. I’d had a bit of a breakfast mishap (read never confirmed/received first part of breakfast bolus) that had resulted in a blood sugar of 317. I’d corrected and thought I’d still be high… I wasn’t. I what a whole 54 mg/dL. And didn’t. feel. a. thing. I find that super scary that I could drop 263 points in the course of a couple of hours and not feel even a little tremble or warmth. I ripped open the packet of Mandarin Orange gel that was in my purse and was unprepared for the gel’s consistency. Aside from making a mess, the orange gel did its job and brought me back up into range.
When I got my samples, I was excited to try the vanilla, so I asked Ethan what his favorite flavor was. He said he liked the Mandarin Orange. The orange flavor was okay, but I’d say it’s not my personal favorite. I also don’t have a good track record with orange flavored anything.
The next day, in an insane turn of events, I was trembling so badly that I could barely stab my finger to test. I read at 65. I hadn’t had symptoms at 65 for months. I ripped open the vanilla, much more carefully, getting the hang of the whole gel thing. It tasted pleasant and also a bit familiar… kind of like honey. Brad tried a little taste and of course liked it (I’m sure you’re not supposed to share low treatments… but oh well.) I was back in range quickly.