I keep waiting for Blogger to retrieve yesterday’s post and the comment I never could reply to but I’m tired of waiting so I’m reposting it.
Ten things I hate about you, Diabetes - Thursday 5/12: Having a positive attitude is important . . . but let’s face it, diabetes isn’t all sunshine and roses (or glitter and unicorns, for that matter). So today let’s vent by listing ten things about diabetes that we hate. Make them funny, make them sarcastic, make them serious, make them anything you want them to be!!
This was a hard writing prompt for me because I try so hard not to dwell on the negative side of diabetes. I have had my moments, don’t get me wrong! My focus tends to be that diabetes may not be my first choice but I’m happily living my life with it. So having to come up with a list of gripes was digging into a part of my brain I tend to keep boxed up all neat and tidy. Heath and I started talking about different diabetes annoyances and by the time I sat down to write them out I had opened a Pandora’s Box of diabetes injustices. For what it’s worth, enjoy!
In no particular order:
1. I hate that a number on a machine tells me if I’m hungry or tired. I have lived with diabetes for 23 years and in that time of being told when I should or shouldn’t eat I think I have actually forgotten what it feels like to simply be hungry. Periodically my stomach will growl and my blood sugar reading isn’t high or low. It takes a moment to remember I’m still a person! I can get hungry like anyone else. Most the time I’m just munchy or craving food but that’s a different issue!
As far as the tiredness issue is concerned, my second pregnancy really threw me for a loop because up until that point in my life sleepiness meant high blood sugar. During that pregnancy I would snooze for a while and then force myself to get up to see how much insulin I needed to correct the high, only to find out I was dropping dangerously low. Now I can’t tell the difference anymore. I may be high, low, or just tired. I am a mother of three after all. I just really hate that my first reaction to a normal human function is “What’s my blood sugar doing?”
2. I hate the idea of “diabetic” rather than “person with diabetes.” Now I realize I say diabetic a lot but what I mean is I hate when people pigeon hole me or others as just a diabetic. I am not just a diabetic. I am a wife, mother, sister, daughter and many other family relationship terms. I am a person. I have an interest in education so I was a teacher. I love to write so I blog like I may die tomorrow and I don’t want anyone to miss out on a good story I knew of. I am so much more than a diabetic. I am not my disease. Period.
3. This one will raise some eyebrows. Leave your testimonials if you disagree. I hate my CGM (continuous glucose monitor). I hate that I made so many people jump through hoops to get it for me only to be completely turned off by my experience with it. I hate that the technology is new enough that I don’t understand how it can benefit me and my diabetes management and I haven’t gotten enough support from those who “should” understand the merits of a CGM.
I feel blessed that Heath is an analyst and if he had the time he could analyze the data and help me make adjustments but I don’t think I should have to be married to an expert in order to benefit from my CGM. I hate that my doctor and I have different ideas of what the CGM data means and neither of us can communicate our point of view well enough for the other to understand. I hate that I see data that tells me nothing I didn’t already know about my blood sugars throughout the day so I don’t see the point of wearing something that is uncomfortable just for my endocrinologist’s sake. I hate that the CGM is so uncomfortable on my abdomen I prefer to wear it on my arm but I’m tired of answering questions about it because it’s so visible. I hate hate hate the 20 minute delay between what the CGM senses and what is actually happening in my body. I hate how the CGM comes with so many rules. It has to be on the same side I wear my pump on etc. Have I mentioned that I hate CGM technology? One last thing about CGM’s and I’m done! I hate how I feel like a lab rat on display. This is a great segue into my next hate about diabetes.
4. I hate having to go to so many different doctors, specialists at that, just for diabetes care. It makes me feel like I’m walking in to lift up my skirt for the diabetes paparazzi. Considering the thousand plus posts I have published in about 4 years, I know it’s crazy to believe I’m a private person but I am. “Normal people” don’t have to divulge as much personal information to a panel of experts as often as I do as a diabetic.
5. I hate that I can’t sleep through the night as if I’m some newborn or something. I am extremely grateful that I always wake up when I’m low, don’t get me wrong. I hate that when my kids were babies I was up multiple times in the night either to nurse a baby, soothe a crying child, or correct my low blood sugar. When I used to count the nights I woke up with low blood sugar I now count the nights I actually sleep all night. Although lately those are usually attached to the mornings where I’m supersonic high! Most nights I can feel my blood sugar dropping all night long and it makes me crazy.
Take the other night for example. I woke up at 0 wee hours of the morning to a reading of 124. I drank a weight loss shake just in case. My blood sugar was 103 at 6:00 am and 48 by the time I reconnected my pump after my shower. I hate having to eat before bed so I don’t worry I may die in my sleep. I hate not being able to quickly go back to sleep after I have to get up. I hate that even a strange dream that wakes me up means I think I better test just in case there’s a reason why I woke up.
6. I hate that diabetes management is so invasive. The truth be told, I don’t enjoy poking my fingers multiple times a day and I certainly don’t like the black dots on my fingers from previous pokes. Although I can’t help but laugh when I poke one part of my finger and when I squeeze blood comes out of an old hole instead of the new one. My favorite is when it squirts across the room!
I didn’t like giving injections when I did and as nice as it is to only have a needle in my body once every 2-3 days to insert my infusion set, that’s actually scarier to me than the freaking injections ever were! I hate the mind game of “will it hurt this time or not?” I also hate scar tissue. It’s unattractive and screws up my blood sugars sometimes. I hate all the extra supplies that come with all the invasive management measures. I hate 24 hour urine collections, spot urine tests, having my blood drawn every 3 months especially when the phlebotomist bruises me! I basically hate going to the lab every 3 months. It’s another obnoxious invasion of my privacy and sometimes it hurts.
7. I hate worrying about my own mortality. When will I die? How will I die? I hate reading about diabetes consequences. I hate knowing that while I worked hard to be in as perfect control as I could manage when I was pregnant that pregnancy itself accelerates diabetes related complications, regardless of control. I hate this worry so much I try not to think about it because I have enough anxiety in my life. Morbid thoughts in one’s 20’s or 30’s is too young. Moving on . . .
8. I hate math and diabetes requires way too much math. Carb counting, insulin to carb ratios, blood sugar readings, A1C results, corrections, schedules, exercise to blood sugar correlations, etc, etc, etc.
9. I hate the guilt I feel from eating out of a box. I prefer to eat out of a box because it provides portion information as well as carb information. “Healthy” meals that are homemade are a stab in the dark for me. I almost never get it right. I know there are books out there to help with carb counts of “healthy” food as well as restaurant food. But it seems so subjective. Is my potato small, medium, or large? How about my apple? A small potato sends my blood sugars to the moon if I use the bag’s carb suggestion, even when I double it just in case. I almost never count fruits and vegetables in my carb count because the sugar doesn’t last long enough and I don’t want my blood sugar to fall on it’s head an hour later.
10. I hate how misunderstood diabetes is. My pet peeve is the phrase “Pronoun has/have diabetes really bad!” Nobody has it really bad. You either have diabetes or you don’t. There is no tiered level of severity. Some people manage it better than others but nobody has it really bad. I know I should get over this memory especially since I’ve blogged about it before, but I hate that an ophthalmologist's nurse asked me how long I had been diabetic and when I told her she said, “That’s scary.” No it’s not! It happens. My pancreas quit on me, what am I going to do? I also had my tonsils and adenoids removed. Is it scary that they weren’t working properly so a surgeon decided they were expendable?
I would like to thank the masterminds behind Diabetes Blog Week for inspiring this rant! Apparently coming up with 10 diabetes hates was easier than I thought it would be! I do feel a lot better now that I got this off my chest. Tomorrow’s writing prompt is much more positive so hang in there. It gets better.