Okay, I missed the boat on the Invisible Illness Week (it was last week). So here's my late questionnaire.
1.
The illness I live with is: type 1 diabetes, celiac disease and grave’s disease
2.
I was diagnosed with it in the year: all in 2010
3.
But I had symptoms since: 2010
4.
The biggest adjustment I’ve had to make is: managing two medical diets that conflict with each other (T1 and celiac), and having to take a pill with strict guidelines everyday (must be on empty stomach, same time every day, can’t be within a couple hours of any calcium or within 4 hours of any vitamins or birth control pills--grave’s disease.)
5.
Most people assume: that I’m sick every day since I have illnesses (not true!)
6.
The hardest part about mornings are: Making a concerted, conscious effort to stay positive all day. I actually have an internal conversation with myself upon waking, every day before I get out of bed. I tell myself all the things I'm grateful for.
7.
My favorite medical TV show is: dLife on CNBC. I watch it every Sunday night without fail!
8.
A gadget I couldn’t live without is: my meter and insulin pump. I quite fancy my CGM, too.
9.
The hardest part about nights are: Having too much time to worry about my health and to over analyze things.
10.
Each day I take 4 pills & a billion vitamins. And a probiotic and digestive enzymes.
11.
Regarding alternative treatments I: believe that diet/nutrition and stress play a bigger role in causing/maintaining illnesses than what doctors emphasize, and that our healthcare doesn’t give alternative treatments enough credit for helping us to manage or ease disease.
12.
If I had to choose between an invisible illness or visible I would choose: Invisible because I don’t like people assuming I’m “sick” every day just because I have a diagnosis. Most days I live a very normal life like everyone else!
13.
Regarding working and career: I am really interested in diet/nutrition and in the beauty industry. I don’t know which one I’d rather work in!
14.
People would be surprised to know: that I have journals that date back 15 years (it’s great to see how my younger self thought, and serves as a great memory of what life was like pre-disease).
15.
The hardest thing to accept about my new reality has been: 1. People always looking at me with puppy dog eyes and feeling sorry for me. 2. Realizing how difficult it is to lead a normal social life with celiac disease. That’s been a harder adjustment than the diabetes.
16.
Something I never thought I could do with my illness that I did was: 1. find enough meals/food that works for both medical diets! 2. Talk about my diseases without crying. 3. Be strong enough to help others in the same boat.
17.
The commercials about my illness: seem to focus on the negatives (like the complications) and don’t focus on how to live well with disease. They make it seem like the best you can aim for is to feel
normal, but not
happy.
18.
Something I really miss doing since I was diagnosed is: eating out without fear of cross contamination. It’s difficult to not be able to eat at most restaurants that my friends can eat at.
19.
It was really hard to have to give up: gluten. Definitely harder to give up than anything I had to give up for diabetes.
20.
A new hobby I have taken up since my diagnosis is: reading gobs and gobs of health-related books, positive thinking books (channeling Louise Hay!) and healthy, gluten free cook books.
21.
If I could have one day of feeling normal again I would: Go out to eat at a restaurant I cannot normally eat at and order whatever I want! With gluten! And high carb!
22.
My illness has taught me: 1. That Microsoft Word with always autocorrect the word “carb” to “crab,” so be careful! 2. That you can live a pretty normal life with diabetes and a semi-normal life with celiac. 3. That no matter how good you feel, you’ll always feel different than your healthy counterparts (always feel like you are in a slightly different category).
23.
Want to know a secret? One thing people say that gets under my skin is: 1. "My aunt lost her leg to diabetes." 2. "My aunt died from diabetes." 3. When someone asks me if I’ve seen Steel Magnolias,(yep, been asked several times), in case I didn't know what suffering with or dying from my disease looks like. 4. When people say “I give you credit because I could NEVER maintain the diets that you have to” (oh, you mean the ones that keep me alive? Trust me people, despite what you say, you would do it). 5. When people are surprised that someone like me can get diabetes (“you’re too skinny!”)
24.
But I love it when people: 1. Try to understand my illnesses. 2. Don’t see me as a sick person.
25.
My favorite motto, scripture, quote that gets me through tough times is: It's more like a philosophy than a motto/quote, but health is more than the absence of disease, and therefore, I am healthy/health is within my reach. I can be healthy WITH a diagnosis.
26.
When someone is diagnosed I’d like to tell them: Join a support group, especially for celiac disease and join the DOC and read blogs for T1. It will change your life!
27.
Something that has surprised me about living with an illness is: 1. You’ll have to think about it every day, forever. There are no more carefree, spontaneous, throw-caution-to-the-wind days, because you will always have to plan ahead for T1 and celiac. 3. That it would open my heart to understanding others with different diseases than mine. I try to put myself in their shoes for their particular challenges, more now than ever.
28.
The nicest thing someone did for me when I wasn’t feeling well was: Stay up all night with me when I was scared to fall asleep.
29.
I’m involved with Invisible Illness Week because: Well, technically I missed it, because I didn’t know about it (oops). But invisible illness week is important b/c it helps me to remember that there are others with invisible illnesses, and not to focus solely on mine.
30.
The fact that you read this list makes me feel: That you are probably in the same or similar boat, or you probably wouldn’t be interested in my blog to begin with! But also makes me feel that you can probably relate very well to the answers I wrote.
