We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)
One thing I can say 100% for sure is that diabetes has made me better at math. Addition, subtraction, multiplication, division, graphs, patterns, fractions, confidence intervals… those things that I hated in school came back to rule my life.
You’ve heard the saying “numbers don’t lie” before, I’m sure of it. One of my most recent victories has been understanding that number can, in fact, lie. Most medical professionals want to know one number for people with diabetes: the A1c. Here’s my A1c history since my diagnosis less than two years ago:
- August 2011: 11.3 at diagnosis
- September 2011: 8.3 (big drop!)
- February 2012: 5.9
- August 2012: 6.1
- March 2013: 6.2
I parroted these numbers to medical professionals when asked and was judged on them. In fact when the 8.3 was reported, I got scolded by a PCP (who I won’t be seeing again) for such a “high” A1c. She saw that 8.3 in a vacuum. She didn’t see the diagnosis date one month prior and she didn’t see the massive 3-point drop. Likewise, I was praise by other members of my medical team for the 5.9… but what they didn’t know about those two numbers were that they were lies. LIES!!
The 5.9 reflected a lot of changes in my basal rates, my carbohydrate ratios and diet. It reflected a lot of low blood sugars. It didn’t reflect excellent numbers all the time. It wasn’t a real representation of my diabetes management. What the last two number reflect are a better grasp on my numbers, new insulin and the introduction of a CGM. They’re stable. Admittedly, they’re pretty good. Even if it’s not my personal goal.
Numbers other than A1c values can lie also. For example, this morning I had a reading of 77 but I felt like I was 27. Since meters are only required to be accurate within 20%, I could have actually been in the low 60s. Prices for our supplies can even lie, if you look at an insurance EOB you can see that.
Honestly, accepting the fact that numbers can lie is only a tiny accomplishment in my life with diabetes, but I was thinking about it today. Bigger D-accomplishments include:
- Advocating for my own health when I need to
- Educating others when I have the opportunity
- Getting every high blood sugar back into range and appropriately correcting the lows
- Giving myself that first shot
- Pushing the paperwork through to get on my OmniPod and Dexcom
- Having a normal life with a chronic health condition
- Making it on time to doctors appointments without the aid of a personal assistant
To read other accomplishment posts, go here.
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
As a person with a large medical team (six right now), a lot of time and careful planning goes into getting the medical stuff that I need while still having this wonderful thing people like to call “a life.”
Lately, I’ve been fed up with being scolded by medical office staff and emails from my pharmacy. Today I just need to vent.
Last year, all of my medical visits hit at the same time and I was completely overwhelmed by everything. Because of that and our insurance all of my visits needed to be spaced out. I looked at the state of my health and decided to push my annual exam back a couple of months. When I scheduled my appointment, I let the nurse know that I would run out of my current prescription a couple of weeks before my appointment. She assured me that would be fine and to just call their refill line and explain that I need an additional month to hold to my appointment. I thanked her and that was that… Until yesterday.
Yesterday, I got a voice mail from Debbie in my doctor’s office. I’m definitely paraphrasing but it said something like: We got a call from your pharmacy requesting a refill on your prescription. You haven’t been seen since February so we can’t refill your prescription unless you make an appointment. You need to call our office and make an appointment.
The message would have been fine if a few things were different: 1. If her tone were pleasant or at least not so freaking rude. 2. If she had checked to see my appointment on the books for May. 3. If she had left the office number instead of making me look it up. 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
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 clicked over to this article from Twitter the other day in part because I already wear a medical monitoring device. It’s an interesting read, but to summarize it talks about how someday technology may make it possible for insurance companies to do the same thing with our bodies that they can let us do with our cars, have a device that monitors activities and gives rate incentives on choosing low-risk/healthy behaviors.
At this moment, I have a platinum and silver wire in my right thigh. The sensor wire makes contact with a transmitter that sends blood sugar information to a receiver where I track my trends, patterns and movements, helping me make better choices about my health. As I was reading the article I thought about how I’ve been turned down for additional life insurance coverage because of my “history of diabetes and long-term insulin use.”
It astounded me to be turned down for additional coverage because I have a bum pancreas that forces me to make healthy choices, the questionnaire didn’t bother asking about my current health status (things like blood pressure, cholesterol, kidney function or even A1c). I get denied but people who have a history of alcohol abuse or who smoke can get additional coverage.
I often feel like the world is unfair (which is true). I can’t “catch a break” ever because I don’t have a functioning pancreas. I get penalized with prescription costs, testing expenses, the ignorance of others, plates that look like math and higher insurance costs coupled with being denied coverage because I’m obligated to check the diabetes box. (The box literally just says diabetes, doesn’t ask for type or any other information.)
One stinking word doesn’t define my existence or even my health. Sure an implanted health monitoring device is pretty big brother-ish, but I thought about how something like that would capture healthy eating habits and exercise and give a better picture of me as a healthy person than a check box on a piece of paper the causes red flags to go up.
What do you think? Would you volunteer to wear a monitoring device?
A collection of random thoughts on glucose meters. Enjoy.
1. I’ve called myself a meter hoarder, but I know there are others with a larger collection than me. I have five meters.
2. I get really annoyed when people call blood glucose meters “diabetic meters.” It doesn’t have diabetes, monitor diabetes or require you to have diabetes in order to use it. I’ve
stabbed poked and tested many a non-diabetic with them (at their request of course, I don’t go around randomly checking BGs.
3. I do get confused when people call them “glucometers.” It looks right spelled out, but sounds foreign to me when spoken. When I got my wisdom teeth extracted, the nurse asked if I’d brought my “glucometer” with me or if we should test on the office’s. It took me a solid 10 seconds to realize what she was talking about.
4. I love it when people ask me about meters. My brother called to wish me a happy birthday last week and in the middle of our conversation asked, “What’s a USB meter? What does the USB do?”
5. Why is it that high readings take longer to come up? My meter is super speedy when I’m low or in a good range, but it takes forever to process when I’m 170+. Or maybe it’s just me?
I sat behind the closed door of my office during a rarely taken lunch break. I had turned my phone on speaker in order to type while on hold, cringing at the choice of hold “entertainment.” Through the hold programming, I learned about absorbent dressing, mini-catheters and other medical equipment that makes you squirm to think about it. I was calling to find out when my pending order for my CGM sensors would ship out, but I got an education on wound care and ostomy products while I waited and hoped that phone volume wasn’t too loud that my coworkers were being educated as well. Sound carries strangely in our office.
Sometimes the things that I need to do in order to manage my health are uncomfortable. Even more uncomfortable than giving myself shots.
Sometimes the things that I need to buy in order to manage my health, make me look young for my condition. Like nutrition shakes that feature elderly people on their ads.
Sometimes the things that I need to carry with me in order to manage my health make me look like a drug addict… who doesn’t carry needles in their purse?
Sometimes the facilities that help me manage my health further the stereotype. My diabetes center shares a building and a lab with a geriatric medical office.
Not matter how awkward it is, I need to plug through it. Discomfort, appearances and stereotypes shouldn’t deter me from doing what I need to do.
Neither should insurance paperwork or long periods of time on hold… but sometimes they do.
I have to say that I envy people who don’t give their health benefits a second thought. Who don’t research all 12 of their doctors, but just stick with the one or two that they’ve always used. I envy the people who can say they “feel like a pincushion” after donating blood or getting a shot. I really envy the people who can eat without math or not pass out at a blood draw.
Despite all of the draw backs, I’m thankful for my life, and health, with diabetes. If I didn’t live with type 1 diabetes, I would have died from it… so being on this side of the dirt is not something to take lightly.
Dexcom vibrated on the nightstand and I ignored it. I heard it, but I ignored it. It vibrated again, but this time was accompanied by the ear-splitting “beep” alarm. Instinctively I threw out my arm and dragged the glowing receiver in front of my face. It said I was high, reading me at 184 and the time registered as 4:15 am. I rolled over onto my back, holding the receiver on my chest and allowed my eyes to droop closed again and the screen’s glow lit up the entire bedroom.
“Are you going to handle that,” mumbled Brad, causing me to open my eyes again. I didn’t want to get it, I just wanted to go back to sleep. I reluctantly pricked my finger and tested while my husband stumbled to the bathroom.
“What was it?” Brad asked when he climbed back into bed.
“It was 141, I didn’t need to be awake,” I complained and went back to sleep.
The longer I live with diabetes, the less annoying the various aspects of self-care become. I’m pretty sure that I will never stop being annoyed with the sleep interruptions though. Read the rest of this entry
When I agreed to participate in a survey-based research study, I found out that I could choose to have a donation made to one of two charities, or split it between both. One of those organizations was call Life for a Child. I decided to do a little research and found that this organization helps children with diabetes have access to insulin.
For many reasons, I’m thankful that I received my diabetes diagnosis as an adult and my family was never saddled with the emotional and financial burden of diabetes. For some families,the obstacles to having the treatment their child with diabetes needs are great, which is why this organization is amazing. I’m joining many other d-bloggers in talking about this organization and encouraging our readers to support it. This Valentine’s Day, members of our community decided to encourage those around them to donate what they might spend on flowers to this organization, which in my opinion is a very loving, giving and wonderful idea.