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.


31 years and some cupcakes, too

June 13, 2011

Here’s the thing: Today is my 31st anniversary of my type 1 diabetes diagnosis.

It’s my 31-year diaversary, if you will. And while I hoped to offer a post containing all kinds of witty musings and tender lessons learned, complete with inspirational how-to’s and potentially-scary things gone awry that turned out to be funny and fine after some unexpected help…I’m not really feeling it. Sorry about that.

I’ve been trying to write this specific post in the few weeks since my last one. After I got all revved up and started with d-blog week 2011 (which was awesome, and quite the cool way to start this whole d-blog thing.Thank you, Karen!), I lost some steam. We had a ton of guests coming to stay at our house one week after another; lots of excitement with end-of-school-year and other special events; and just not a lot of time to actually sit down and type any of the things I’m thinking about D into a blog post.

However, I did have the opportunity to do a guest blog for Kim at Texting My Pancreas, and just finished another for Meredith at with a side of insulin that you’ll see on June 15.

Anyway, a lot has gone on. Other major life things happened, and lots of not-so-major life things too, that occupied my head and heart right along with D:

*Ms. Diva had her preschool “graduation” (Really? She’s five!) and kindergarten registration for August.

*Ms. Diva also had her first ballet performance, where she realized that she is meant for the stage with an “I belong here” look in her eyes as she promptly stopped doing much dancing so she could search the audience for her family and give us a huge smile.

*My mom traveled to visit us for the week of both of Ms. Diva’s events.

*My partner and I celebrated our 16th anniversary last week. And after a year in the new home/town, we actually found a wonderful SITTER(!) who lives just around the BLOCK(!) and whom Ms. Diva LOVES(!). Now we get to go to a movie next month, too! HALLELUJAH!!

*A good friend just gave birth to a beautiful baby girl. Hello, Baby M! Congrats, Mama and Papa!

*It was my nephew’s 2nd birthday this weekend. Happy birthday, adorable boy!

*My best friend finalized and accepted an offer for an awesome new job that will take her from Northern California to Rhode Island. I’m so. totally. excited. for her, and at the same time, sad that she’ll be so far away. Another of our supergood friends and I had a gorgeous farewell dinner with her, and then she spent a whole day with me, my partner, and Ms. Diva this weekend with all kinds of yummy treats (Sift Cupcakery and In-N-Out Burger, anyone? Yes, please!)

*I’ve been working on keeping up with 4-5 bouts of walking/running per week. I love this major life change, but it still takes a lot of my focus and attention in order to keep going and not slack off.

So…thirty-one years. That’s a hell of a lot of time. Most of my life. And what do I have to show for it?

So far, on one hand: A whole lot of not-too-much, for which I am insanely grateful and lucky. I’m not sure that I deserve not having much of any complications that my doctors and I are aware of at this point in time, other than recent root planing and laser treatments in all 4 quadrants of my mouth, combined with a grievance/appeal to my dental coverage to get an exception so they would pay the benefit.  Although it could change at any moment, I’ll take it and be thankful.

On the other hand, I have many many minutes, energy, dollars, focus, sweat, tears, concern, annoyance, anger, frustration, and ME to show for 31 years with D. It’s me testing the BG and glancing at the CGM throughout all of the special events above; chugging some juice before the ballet so that I can smile big right back at Ms. Diva while she’s on stage; SWAGing the carb count for the yummy Korean dinner with my BFFs; schooling the dental coverage provider that treatment of gum disease earlier than later is the standard of care for women with diabetes, so even though I didn’t have too terrible of gum disease YET, I needed the treatment; etc. etc. etc. It’s me thinking 24/7, making choices, balancing the best and the worst D-options and trying to come out with some solutions that work best for me, my loved ones, and the life that is ours.

After 31 years with D, I can’t spend 5 minutes with someone without showing them some small evidence of it. That’s okay. It’s how I need it to be. Diabetes is everywhere, a huge part of my identity, and unhealthy for me to ignore or deny.

D shows up all throughout my days and my life; but it is not the meaning of my day–or my life.

(Now, cupcakes, especially from Sift, could very well be the meaning of life! Or at least, the meaning of my 31st diaversary! I got a few to sample in honor of the day. Photos will be taken and posted soon, I promise.)


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