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I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.

Saturday, December 3, 2011

The trials of a single adult with T1 diabetes


It is a wonderful Saturday morning. I'm sitting at Caribou Coffee, drinking a skinny Ho Ho Mocha and reading a new book entitled My Sweet Life: Successful Women with Diabetes. What a great book to read. I bought it after seeing fellow blogger Alexis Pollack (www.irunoninsulin.com) post it on her blog. She actually has a chapter in it! I am also enjoying Riva Greenberg's chapter. I have essentially the entire book left to read, so I am really excited to learn more of these amazing women's stories.

But what I am hoping to find are some stories of women who were diagnosed with T1 when they were adults. So far all of the stories are of women who were diagnosed as children. I have a hard time finding stories in any book/magazine of people like me. As a person who was diagnosed as a single adult woman, the diagnosis impact, I think, is different than those diagnosed as children. Neither impact for either situation is good. But I think they are very different experiences.

I was a single adult when I was diagnosed with t1 in 2010. I live 700 miles away from the closest family member. I had a job. Bills. Responsibilities. Social calendars. Student loan payments. A chronically ill dog who I love(who's still with me). And I was taking care of it all on my own, I was a self-sufficient machine. And then I got t1 diabetes. And just like that, everything started to fall apart. As a newly diagnosed t1, (when providers are still playing with your insulin dosages to figure out what works for you), I was very ill with both extremely high and low blood sugars every day. I missed so much work that I eventually lost my job and sole source of income. There was no one there to help- as a single adult, you're on your own. There's no one to step in and pay your bills, do your grocery shopping (or buy your groceries for you), bring you chicken noodle soup, keep your house up and assure you that everything will be taken care of and you'll be okay. There were no parents to do that, no husband. It was just me, my dog and my diabetes. I drove myself to every doctor and hospital appointment (which totaled more than $169,000 in the first 11 months). I picked up my own prescriptions. I wrote my own appeal letters to the insurance to have my diabetic equipment and drugs covered. I drove myself to the ER and urgent care, when needed. I took my own notes during my appointments and asked all the questions. I had to argue with my insurance company when bills weren't paid correctly, then follow up with calls to clinics to let them know I'd called the insurance company. I set up my own payment arrangements in attempt to pay for all the medical expenses I now had, using my unemployment income to pay for all of my bills.

When you are a single adult, there might not be anyone else to help you manage things. Some of us are too old to move back in with our parents and don't have anyone else to support us (emotionally or financially). Friends can definitely help you out when you are sick, but in general, the help of friends may not be as consistent (you are not their responsibility in the long run).

And I'd love to start reading more about people's stories who are similar to mine- diagnosed as an adult, having to carry the entire burden on their own shoulders. And do it successfully.

I'm still a single adult managing my diabetes alone. Add to that Celiac Disease and Grave's Disease. And I'm doing it pretty successfully. I am once again working, supporting myself, running life's day to day responsibilities, and still trying to pay off 2010's medical bills. I've got my system down, have some friends who love me and have found additional support through my online diabetic and celiac friends and blogs. I've learned to treat and talk about my t1 and celiac confidently, because I'm not ashamed of it anymore. I want people to see 'hey, I'm a diabetic, and i also can't eat wheat/barley/rye/oats because I'm celiac, but I'm still a normal, happy person.'

My diseases are just two of the traits that define me. I'm also poetic, a great cook, advocate, a funny person, super compassionate, animal lover, 4.0 MBA student, a dedicated employee, Jesus follower, food lover, coffee-a-holic (decaf only, please!)and a loyal friend.

Anyways, I'm excited to read this book. I'm always looking for additional sources of inspiration, whether it's in a book, a new hobby or a new friendship. I'd love to hear what your source of inspiration (read: sanity) is. What do you do?

8 comments:

  1. Your confidence is so awesome! You are right that diabetes (or any other "fun" thing that comes along with it for the ride) isn't all of who we are. I have to say that I've not heard of this book before - I'll be interested to hear your thoughts on it. :) Thanks Nikki!

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  2. Hi, I also have T1 diabetes and celiac.

    I don't know of any books specifically, but there are blogs of women who were diagnosed as adults. Amy at http://www.diabetesmine.com/ http://diabeticizme.wordpress.com/
    http://momentsofwonderful.com/

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  3. I don't know of any books but would be very interested in reading about this subject. I was diagnosed at the age of 22. Recent college grad, new job, new city and a new marriage (less than 4 months). Twenty years later I still struggle with the burden of managing this on my own.

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  4. The Sugarless Plum is actually a really good/intense memoir I happened upon. It's written by Zippora Karz, a young woman who danced in the New York City Ballet and was actually misdiagnosed with type 2 originally BECAUSE of her age (she was 21), then diagnosed with correctly with type 1.

    Some of the material is a bit awakening/intense, but all together its a book I will never forget.

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  5. I was diagnosed 10 months ago at the age of 49. I would love to read about women in this same situation. I dont have the insurance issues you have had. My husbands retirement provides excellent benefits, that will carry me through the rest of my life. I know I'm blessed in that area. It's the learning to live with it, raising a teenage daughter with it. I raised one without it, the 2 girls have completely different moms, in the same person.

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  6. We have a lot in common. I was diagnosed at 22 with sudden onset. I also recently discovered I have celiac too. I have been single now for about 2 years and it's been rough. I went through 1.5years without insurance. I've been struggling through some major depression.
    I hate living it alone.
    This post is full of confidence and I envy that. You are one strong chicky!

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  7. Diabeteen, I just saw that Zappora Karz has a chapter in this book I'm reading! Excited to read her story.
    Lili- thx for the links!
    I'm really enjoying hearing your individual stories. Thank you for sharing them with me. It lends a level of support and understanding that is immeasurable.

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  8. Sara at momentsofwonderful.com was diagnosed as an adult, and so was Holly at arnoldandme.blogspot.com. They might have good stories to share. I'm happy to have found your blog. I don't have Celiac, but I'm an adult T1 on my own. It would be so nice to have someone there to help. I can relate. Your attitude is wonderful!!

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