Sunday, September 18, 2011

21 Things About My Invisible Illness

It is said that 50% of the U.S. population suffer from some kind of invisible illness. This is invisible illness week so I thought I would share 21 things about how I deal with Type 1 Diabetes.  And why 21 instead of 30?  Well, I was diagnosed 21 years ago this month.

1. The illness I live with is: Type 1 Diabetes
2. I was diagnosed with it in the year:  1990 (September)
3. But I had symptoms since: Three months before
4. The biggest adjustment I’ve had to make is: having to spend so much time taking care of myself. 
5. Most people assume: that I did something to cause it.  After I was first diagnosed I had a close family member tell me that I probably got diabetes because of the anti-depressant I started taking the previous winter.  People like to find reasons for things that usually have no identifiable reason.  Also, people often assume that I have Type 2 Diabetes because I am overweight and I was 26 when I was diagnosed.
6. The hardest part about mornings are: that they come!  I am a true Night Owl.
7. My favorite medical TV show is: Glee?  Not medical, but my ER days are over and my own life is enough medical drama for me.
8. A gadget I couldn’t live without is: My insulin pump, my new Dexcom CGM, and my new compass in my car - an archaic GPS system for a girl who now lives in the Middle East but is used to living in the Rocky Mountains and establishing her whereabouts with peaks and valleys
9. The hardest part about nights are: making myself give up on the day and actually going to bed.
10. Each day I take:  one vitamin, and five other pills, and of course insulin infusion.
11. Regarding alternative treatments I: I think alternative treatments have their place but when a few of the health "experts" in my family try to convince me that my type of diabetes can be cured through diet, exercise, or the homeopathic drop of the month, I get my back up and stand more firmly behind science and traditional medicines.
12. If I had to choose between an invisible illness or visible I would choose: Both?  It is nice being somewhat incognito with my illness, but there are times when I wish diabetes could have a more visible, public, heart-breaking appeal so that researchers, rich donors, and governments would be more motivated to find a cure.  Which Hollywood mogul is going to wear the diabetes ribbon on his or her awards ceremony designer fashion and pound the pulpit of awareness?  Even the celebrities who have diabetes are pretty quiet about it.  I bet Wilford Brimley comes to mind when you think of diabetes, but what about Mary Tyler Moore, Halle Berry, Nick Jonas, and Salma Hayek?  I think that because this disease is perceived as so "manageable," along with those who suffer from it, the world does not make it a passionate priority.  Maybe we need to get more rowdy fellow diabetics!!!
13. Regarding working and career:  I used to be a junior high English teacher, in fact one of the biggest reasons I went back to school and chose a stable career in teaching is because I knew I would receive health benefits.  We had no health insurance when I was diagnosed, so when I landed my first teaching job I felt so blessed to finally have help with my medical costs.  Unfortunately, teaching is a rigorous profession and physically demanding.  One of the many reasons we moved to the Middle East is so Brett could make enough so I wouldn't have to work and I could concentrate on taking care of my health.  Has it worked?  Well, that is another blog post entirely.
14. People would be surprised to know:  How much time, money, and energy it requires to be a proactive diabetic.  Insurance only goes so far.  Sometimes I fantasize about all the Hawaiian vacations we could have gone on with the money we spend on diabetic care.  I also fantasize about being Elasti Girl too, but that isn't all about diabetes.
15. The hardest thing to accept about my new reality has been: Limitations.  I have never been good with missing out on anything.  My mom tells me that I never liked going to bed as a child and it probably was because I couldn't stand to not be in the middle of things.  So sometimes diabetes has waved its annoying hand in my face and forced me to lie down, rest, cancel a fun appointment, and on one vacation, miss hours of Disneyland fun.
16. Something I never thought I could do with my illness that I did was: travel to less than modern countries like Nepal, Sri Lanka, Jordan, and live in the Middle East.  Yes, it is possible to take a year's worth of insulin on a commercial airline in my carry-on bag.
17. The commercials about my illness: are lame and frustrating and don't seem to educate the public about the diversity in the diabetes community.  Do you still use the term "juvenile diabetes?"
18. Something I really miss doing since I was diagnosed is: making my own insulin.
19. It was really hard to have to give up:  My freedom from gadgets.  I'm not one of those women who is glued to her iPhone.  I would rather not have to recharge any battery, EVER, but it seems that the longer I have this disease the more bionic I become.  I tote my insulin pump on my right hip and my Dexcom on my left.  I often feel like a pink version of Clint Eastwood ready for a blood sugar gun fight at any time.
20. My illness has taught me: I am stronger and weaker than I thought and has made my life and the miracles of my working body parts so much more precious.  And I CAN do difficult things, even when my blood sugar is hovering at 32.  I don't recommend it, but I have done it.
21. If I could have one day of feeling normal again I would: Leave the house without a giant purse full of diabetic supplies and probably jump into the pool without worrying that I am ruining a $5000 gadget - yes, I've done that.

You too can share about your invisible illness by going here and answering the simple questions.  You don't have to be as wordy as I have been and you might get through all 30 questions!  

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