d-superpower (#HAWMC day 3)

April 3, 2012

If I had a superpower, it would be knowing which factor(s) played the most prominent role in whatever random, crazy-ass blood sugar (RCA BG) is showing up on my meter at that point in time. Hell, I’d like to be able to tell which factors were responsible for ANY type 1’s RCA BG! Wouldn’t that be so awesome? No more guessing! No more frustration!

Because, on any given day, some RCA BG shows up (let’s be real, sometimes there are more than one per day) and then I get to play the type 1 “Many Questions Game” to try and figure out what happened, and what to do next. Between equipment malfunctions, type 1 malfunctions, and regular life malfunctions, the number of factors playing a role is huge. Here’s a sample of an RCA BG situation of mine:

3pm. Meter says: 269 mg/dl. Dexcom says: 250 with 1 arrow going straight up ^, meaning the trend is that it’s rising at 2 mg/dl per minute. And the questions start piling up in my brain:

  • Did I eat lunch?
  • What time did I eat lunch?
  • How many carbs were in my lunch?
  • Did I bolus for the carbs in my lunch?
  • Did I SWAG (scientific wild-assed guess) the carbs in my lunch?
  • Did I correct for whatever BG was before lunch?
  • Do I have any IOB (insulin on board) now?
  • Is my pump tubing blocked?
  • Is my pump infusion site bloody, blocked or otherwise malfunctioning?
  • Did my pump site get disconnected?
  • Is my pump site getting too old?
  • Did I refill my pump with insulin this morning?
  • Did I use a new insulin infusion set?
  • Is my pump site in scar tissue?
  • Is my insulin at the end of the bottle, when it can get suspicious for some odd reason?
  • Was I low this morning and turned my basal rate down or off for a while, which F’s up the hours afterward?
  • Was I low this morning and turned my basal rate off, and did I forgot to turn it back on?
  • Did I forget to check earlier this morning for the stupid dawn phenomenon, and correct if it was high?
  • Did my dawn phenomenon go even higher than it usually does this morning?
  • How much caffeine have I had today? Have I had more caffeine than usual?
  • Have I exercised in the last 4 hours? 8 hours? 12 hours? 24 hours?
  • If I did exercise, what kind of exercise was it? aerobic or anaerobic? For how long?
  • Have I gotten up from my desk in the last several hours?
  • Did I eat something in the office kitchen when I was passing through earlier?
  • Did I bolus for whatever I ate, if I ate something?
  • Did I test before I ate, if I bolused?
  • What day of my cycle is it? One of the days each month when I need to crank the temp basal up? (Hello, PMS/insulin resistance!!)
  • Am I stressed–about work, about life, about anything specific? More stressed than usual?
  • Stressed about anything other than this high BG?!?!
  • If I am stressed, what amount of stress am I having and what’s my stress correction factor? How many insulin units per how much stress? HOW does one measure amounts of stress to allocate units of insulin for it?!?!

I got exhausted just typing these questions, nearly as badly as if I were dealing with them right now. With my superpower, I’d know both WHY the RCA BG was whatever # it was, and I’d know WHAT TO DO to fix it immediately and so it didn’t happen again. What a relief that would be.

No. More. Random. Crazy-Ass. Blood. Glucose!

For the wego Health Activist Writer’s Month Challenge (#HAWMC) prompt for Day 3: Superpower Day. If you had a superpower – what would it be? How would you use it?

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30 things about my invisible chronic illness

September 18, 2011

I thought I’d use this meme to get back on that blogging horse. These are my 30 things, in honor of National Chronic Invisible Illness week.

1. The illness I live with is: type 1 diabetes

2. I was diagnosed with it in the year: 1980–on Friday the 13th of June.

3. But I had symptoms since: a few months before. My mom took me to the doctor, who said it was just the flu. Maybe that’s what kicked my immune system into overdrive, but I drank and peed gallons of water and lost tons of weight and had fruity-smelling breath and slept all. the. time. for months before being diagnosed in the ER and going into a ketoacidotic coma for 4 days.

4. The biggest adjustment I’ve had to make is: having an uninvited, unwanted entity present in my life every second of every day, and having to pay attention to it all of those seconds.

5. Most people assume: 1. that I can’t eat any sugar 2. that I “got” type1D because I ate too much sugar or weighed too much 3. that my pump is a pager 4. that my CGM (continuous glucose monitor) is an oddly misshapen cell phone 5. that I’m going to have to have my feet amputated…and there are so many more assumptions.

6. The hardest part about mornings are: feeling like absolute crap if my blood sugar is higher than 150 or lower than 70, and then the extra time it takes to address either one of those annoyances when I really don’t have time in the morning agenda for any “extra” things. Being late for work or weekend plans if I have to recover from either being high or low in the morning sucks.

7. My favorite medical TV show is: I really loved House for a while. Medical mysteries are fun if they’re not my own.

8. A gadget I couldn’t live without is: the duo of my blood glucose meter, which I use to check my blood sugar about 12-15 x/day, and my insulin infusion pump, filled with Novolog insulin. My life on MDI (multiple daily injections) was really, super terrible for many years until I tried the pump. My body seems to only want to notice short-acting insulin, and basically ignores any medium- or longer-acting insulin.

9. The hardest part about nights are: if/when my Dexcom (CGM) just. keeps. screaming. or. vibrating. every. hour. or. more. throughout the night, due to blood sugars that are riding either higher or lower than the set maximum and minimum on the device. Good times.

10. Each day I take 3 pills (lo-dose aspirin, generic allergy med, and an anti-inflammatory called meloxicam),  3 vitamins (a multi- and 2 Vitamin D supplements), and infuse about 50-60 units of insulin into the layer of fat below my skin throughout the day. 

11. Regarding alternative treatments I: think they can add a lot to one’s overall wellness and health management, but they aren’t treatment for type1D. Nothing is going to kick my pancreas into making insulin again.

12. If I had to choose between an invisible illness or visible I would choose: there’s really no good answer to this question.

13. Regarding working and career: I’m for it. With type1D, I’m insanely grateful for the opportunity to get medical insurance through my employer. The D hasn’t given me too many problems with regard to my work, unless my blood sugar is low and I have to read or write or speak or think. Then I have to wait 15-20 minutes so that I can see okay and my brain can make sense of what I’m reading.

14. People (without type1D) would be surprised to know: how difficult, and how isolating, type1D can be. For many years I tried to hide and ignore how much space taking care of t1D takes in my life.

15. The hardest thing to accept about my new reality has been: it’s been 31 years now, so the reality isn’t new. Back then, it was hard for me to accept that I wasn’t like the other 7 years olds around me, and that I was going to have to carry this baggage (literally and figuratively) for the rest of my life. Now, the hardest thing to accept about my reality is that it impacts those who love me, and that there is never a break from it ever.

16. Something I never thought I could do with this illness that I did was: ? I really haven’t considered anything that I’ve done, or haven’t done, in context of having type1D. I don’t want to climb Mount Everest or run with the bulls, or skydive, but if I wanted to do those things, I’d figure out how to do them with t1D.

17. The commercials about this illness: aren’t about the kind of diabetes I have.

18. Something I really miss doing since I was diagnosed is: leave the house without a ton of freaking supplies (juice, glucose tabs, blood glucose meter, finger poker, canister of test strips, insulin pen, insulin bottle, pump tubing, pump reservoir, alcohol swabs, CGM sensor, lancets, syringes) in my purse, in my work bag, in the car, in a fanny pack…to just leave the house with only keys and ID is but a dream.

19. It was really hard to have to give up: eating without shame; eating without calculating carbs and insulin and exercise and stress and…

20. A new hobby I have taken up since my diagnosis is: reading d-blogs; tweeting w/ the DOC (diabetes online community); blogging my own d-blog; taking care of myself and my D.

21. If I could have one day of feeling normal again I would: run, run, run without worrying about going low. take several “free” showers (no pump sites or CGM sensors). go out and make someone else drive so I wouldn’t even have to carry keys/ID. buy and wear something that actually fits my body, something with no pockets.

22. My illness has taught me: how to take care of myself. how to put my own needs first. that I’m actually not in control of most things in my life. that numbers are just numbers, they don’t hold a value of my worth as a type1D, or as a human. how to ask for help. how to advocate for myself with medical providers. how to advocate for others. an understanding of difference, in others and myself, whether with regard to invisible illness or many other ways that people are different and treated or made to feel badly because of that difference.

23. Want to know a secret? One thing people say that gets under my skin is: “Are you supposed to eat that?” or “My (family member) had diabetes, and lost her/his toes/foot/leg/vision/nerves/etc.” Don’t say those things to people with t1D. Just don’t.

24. But I love it when people: ask intelligent questions that let me know that they are interested, and that they know there are things they don’t know about t1D

25. My favorite motto, scripture, quote that gets me through tough times is: Just keep swimming, just keep swimming“~~Dori, in Finding Nemo. “Steady on“~~song (one of my very favorites) by Storyhill. “I’m on the edge of glory”~~Lady Gaga.

26. When someone is diagnosed I’d like to tell them: Welcome to the club that no one wants to be in, but most of us here are pretty darn cool folks. Simply because all of our pancreata decided to konk out, we’ve got each others’ backs–which is a pretty incredible thing. You will be okay, even though it may not feel like it. You are not alone, ever. You can do this.

27. Something that has surprised me about living with an illness is: As much as I hate this, I’m pretty good at it. I’m organized, (usually) prepared, and I like to research and learn new things. I like to solve problems and find useful resources. I like technology that’s useful and easy to use.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me an iced drink, sit with me and let me feel what I was feeling.

29. I’m involved with Invisible Illness Week because: I have type 1 diabetes, and I love memes.

30. The fact that you read this list makes me feel: thankful.


letters to dear dr(s). crappy and wonderfulendo

May 10, 2011

DBlogWeek2011Banner

There have been so many of you, I’ll just number you chronologically. Your offenses are very similar: condescending attitudes; inability to listen to what I shared with you; flat-out inaccurate information about this disease; labeling me “noncompliant” or “emotional” and then using that as an excuse not to provide the best medical treatment I needed…and so on. Here we go. (the yrs. old = my age when I saw these drs.)

Dr. Crappy #1 (7 yrs. old): You misdiagnosed me, leaving my mom with “she’s got a flu bug” which several weeks later became me almost falling asleep in the pool during swim lessons. How could you not smell the ketones on my breath? I was drinking at least a gallon of water a day, falling asleep sitting up in the middle of the afternoon, and spending the rest of my time in the bathroom peeing everything out. Easy enough to get urine in a test tube when it’s coming out of me so frequently–WTFructose?! Shame on you.

Dr. Crappy #2 (7-17 yrs. old): You were pretty much the only endo in town. You labeled me “overweight” and “an emotional eater” when I was 10 years old, and I wasn’t overweight (I have my medical file from your office). Every time I came to an appointment, you told me to lose weight. At what point might it have occurred to you that another approach would be helpful? Never?  I attribute at least part of what’s been the story of my life with craptastic body image, eating and exercise behaviors to you.

Dr. Crappy #3 (19-20 yrs. old): You refused to provide medical advice for my diabetes until I lost weight. You have type 1 diabetes, and prided yourself on averaging about 65 mg/dl at any given time, and keeping a bottle of glucose tabs with you everywhere and just “popping a few” as needed–but not too many, watch out! Many times you compared yourself to me with disparaging comments about my weight, my (lack of) BG control and overall “noncompliance.” Thinking of you still makes me cringe.

Dr. Crappy #4 (35-36 yrs. old): You upped my basals constantly based on what–my HbA1c? Because I sure never gave you any BG data to base any decisions. Most of the rest of your patients were type 2, and your nursing staff constantly forgot that I have type 1. Due to your misinformed increases in my insulin ratios, rates and all else infusion pump, I ate all. the. time. and ran low all day, needing more and more food and sugar just to be able to think for a minute. I firmly believe that many of the other meds I “needed” during that time weren’t really indicated, because my symptoms were coming from always being low. I do admit that had I tested more than twice a day (on a good day), I would have had ample data to fight back. But you shouldn’t have been changing anything without that data anyway.

Dr. Crappy #5 (37-38 yrs. old): I am grateful that at least you knew that #4 had me on way too much insulin. Very grateful. I’ll admit that. But, you went way over into the other end of the pool, with your low-low-low carb diet recommendations and strong suggestions that sound just a little bit anorexic-crazed. I’m really glad you never broached your trademarked nutritional protein supplement food replacement thing to me, because I would have lost it on you. Your staff doesn’t know the difference between types 1 and 2, and one said (in the same breath) “Your BG is too high, you need to watch that. I had a patient die from going too low, though, so watch out for that.” You’re also a little lazy, wanting me only on a Medronic pump because the rep hangs out at your office every week, then suggesting the Omnipod because a colleague of yours loved it. Do some research, find out what’s available and then talk options! I will say THANK YOU for writing the letters for my Animas Ping and Dexcom cgm, but you didn’t even want to know how they worked! That’s just weird. Get over yourself.

WHEW! Enough of that ickiness. Nice to get it out there, though. Now, on to the good stuff.

Dr. WonderfulEndo #1: (21-32 yrs. old) THANK YOU for telling me “it would be better if you could lose some weight, but it’s not necessary in order to get your BG under control. You don’t have to be skinny to manage the type 1.” Thinking about it almost makes me cry. You provide the best, most current, most supportive treatment for your patients regardless of their circumstances, and that is so incredibly rare. Here is where I apologize for still not testing more than 2-3 times/day and not providing you with decent data so that we could make the best decisions about my care. We could have done great things together–and I am so grateful for all of my appts. with you. Then, when I didn’t have great or much insurance coverage you didn’t collect anything over the amount billed to insurance. If you hadn’t done that, I would have had to break up with you. SO GLAD that I didn’t have to! You. ROCK.

Dr. WonderfulEndo #2: (38 yrs. old-present day) THANK YOU for listening to me, sitting with me for up to an hour at a time, and looking at my crazy logs of 15 BGs/day and everything d-related, speaking to me as an intelligent person with 30 years of experience. THANK YOU for talking to me as a problem-solving partner. THANK YOU for treating me as someone capable of doing the necessary things, even though they’re hard, in order to take better care of myself. THANK YOU for saying “we can figure this out,” and then helping me do that! THANK YOU for making it easier for me to “tweak” boluses and basals, and for only taking on 1 “tweak” at a time–not my entire plan for my entire day, because that doesn’t do anyone any good. You. Also. ROCK.

p.s. to WonderfulRD/CDE and WonderfulNP/CDE (38 yrs. old-present day) THANK YOU for listening, for laughing and crying with me, for looking at my numbers and logs and ALWAYS asking gentle, positive questions about what I CAN do, never chastising me for what I haven’t done/didn’t do. THANK YOU for alerting me to the fact that I’m a big correction stacker–I’m still trying to limit that a little. THANK YOU for making certain things sound possible, and for celebrating with me when they are! I cry just thinking about how much you’ve helped me. Looking forward to all kinds of goodness to come…and can’t believe I just typed that about my d-team: it’s such a relief, a joy, and a privilege to have medical providers who get it, and who can bring it. It’s about time.


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