It’s Invisible Illness Awareness Week, and as part of that effort, people living with an invisible illness are being encouraged to share “30 Things” about living with the illness that others may not know. So, here it goes…
1. The illness Madeline (and we) live with is: Type 1 Diabetes
2. She was diagnosed with it in the year: March 6, 2011
3. But she had symptoms since: Well, according to the A1C data collected at the time of her diagnosis, her doctors theorized that the onset of T1 was sometime in December 2010, possibly earlier. She had a terrible winter last winter, getting sick virtually all the time. In the week leading up to her diagnosis, Madeline developed severe Diabetic Ketoacidosis, which left her literally screaming for sugared liquids, dropping weight (I thought she was having a growth spurt), and in a terrible mood. Later, as her condition worsened, she vomited for hours, dehydrated to the point of literally begging for water, developed Kussmaul breathing, could not hold herself upright, and could barely speak or respond when prompted. Her blood glucose level upon admission was 727.
4. The biggest adjustment she’s had to make is: not being able to eat what or when she wants. She’s always been a grazer, an eating strategy we always promoted because she was basing her desire to eat on her body’s signals, not on imposed rules for eating. Since going on the insulin pump in August, though, this challenge has decreased. For me, the biggest adjustment has been learning how to cope with and adapt to the constant state of hypervigilance in which I find myself. When you are functioning as a pancreas for your young child, there simply is no other choice than to be continuously alert and vigilant to the relentless and innumerable details involved in managing T1.
5. Most people assume: that if she did not eat sugar, she never would have developed the disease. That it must be “easier” now for us now that we’re gaining experience and adjusting to our lives with T1.
6. The hardest part about mornings is: getting Madeline dressed for school. On top of T1, she has significant difficulties with tactile sensory input. Compared to the challenge of finding socks and clothing that fit just right—and now, that can also hold the pump in a manner acceptable to her—the challenge of managing T1 in the mornings seems like a piece of cake.
7. My favorite medical TV show is: I don’t watch much TV.
8. A gadget I couldn’t live without is: Madeline’s Animas Ping, named Hazel. If there ever was a miracle in the form of a piece of hardware, Hazel is most certainly it.
9. The hardest parts about nights are: getting up about every two hours to check Madeline’s glucose level, and then make and monitor adjustments in a state of complete exhaustion. I have frequently marveled to my husband that the frequent wakings I endured when each of my children was breastfeeding was nothing compared to this. Some nights I might need to check Madeline only twice, but most nights it’s usually three to four times.
10. Each day Madeline takes ? pills and ? vitamins: Madeline takes insulin so that she can stay alive. Simple as that. She takes a multivitamin most days, as well.
11. Regarding alternative treatments: I am a strong proponent of homeopathic medicine. Though I’m no expert, I’ve gained a lot of experience using natural remedies to treat nearly every ailment my family experiences, and as a result, we use very little “contemporary” medication. I so, so wish there were natural remedies for T1.
12. If I had to choose between an invisible illness or visible I would choose: This is a hell of a choice to have to make, so I won’t.
13. Regarding work and career: It’s difficult enough to sustain a full-time job while caring a family of three very active children. Lay T1 on top of that and, frankly, I have yet to find the words to describe how challenging it can be. I have a job that demands much emotional and physical energy from me, and I find it harder now to reserve some of that to share with my children. I will say, though, that I am extremely fortunate to enjoy summers off with my kids, as well as all school vacations, snow days, weekends, etc. I am blessed with very supportive supervisors and colleagues. And best yet, the network of people who care for Madeline when I am working is comprised of the VERY BEST people, to whom I am deeply grateful.
14. People would be surprised to know: how deeply I am grieving right now. I hide things pretty well.
15. The hardest thing to accept about Madeline’s new reality has been: that my child has an illness that, if not managed exactly right, will kill her. That she has an illness that she must learn to live with for the rest of her life, and that will influence everything she does.
16. Something I never thought I could do with Madeline’s illness that I did was: find a way to adjust.
17. The commercials about Madeline’s illness: There is no such thing as “pain free” blood testing, period. F-off, Madison Avenue.
18. Something I really miss doing since Madeline was diagnosed: Being able to go out with friends or with my husband for a night out. It’s not possible now, and won’t be until Madeline is more independent with her care, and the risks of leaving her with people who can’t be expected to know how to take care of her have decreased.
19. It was really hard to have to give up: the freedom of being able to just pick-up-and-go.
20. A new hobby I have taken up since Madeline’s diagnosis is: uh, nothing. It’s a struggle to maintain the few hobbies I already had.
21. If I could have one day of feeling normal again I would: let Madeline go to someone’s house for a playdate—without me having to stay there too. This is the exact thing she would choose for herself, as well.
22. Madeline’s illness has taught me: that Madeline has a level of grace, determination, and resilience that’s astonishing.
23. Want to know a secret? One thing people say that gets under my skin is: “it must be getting easier, right?” I understand the difficulty it is to find the right words, though. Many people care about how we are doing, and want to be reassured that we are doing alright. But, here’s the truth: Living with T1 does not get easier or “better.” We just are getting better at dealing with it.
24. But I love when people: care enough to ask how she is doing.
25. My favorite motto, scripture, quote that gets me through tough times:
“I can be changed by what happens to me. But I refuse to be reduced by it.” –Maya Angelou
26. When someone’s child is diagnosed I’d like to tell them: that you will find a way to put one foot in front of the other, learn how to take care of your child, and live in spite of the challenges that T1 brings.
27. Something that has surprised me about living with an illness is: that “illness control” is a mirage. It truly is. The things we figure out are applicable for all of 2 weeks maybe, before it all changes up again. I don’t think I will ever feel as though I am “on top of” T1.
28. The nicest thing someone did for Madeline when she wasn’t feeling well was: She received many handmade cards from her classmates, wishing her well, when she was in the hospital.
29. I’m involved with Invisible Illness Awareness Week because: it’s important to share and learn from our experience and those of others.
30. The fact that you read this list makes me feel: grateful… that you followed the link and took time out of your busy life to hold Madeline closer to your heart. Thank you.