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22 Responses

  1. Bernard Farrell
    Bernard Farrell April 27, 2011 at 6:11 am | | Reply

    I guess I’d offer that it’s hard to fix many things at once. Maybe Audrie could just focus on one thing, say ensuring that her first blood sugar of the day is a good one. Maybe she could contact Dexcom and ask for a few weeks on a CGM so she can understand what’s happening to her blood sugars. I do hope she can figure out how to get past this.

  2. k2
    k2 April 27, 2011 at 7:30 am | | Reply

    Audrie –
    First off, hang in there and please know that you are not alone!
    I know that living with diabetes can be overwhelming & all consuming.
    I know that you don’t like being different & diabetes makes you feel so different. But here’s the thing, each of us, diabetes or not, has a different concept of what “normal” is. I say screw what you think everybody else’s normal is and embrace your normal and who you are.
    I can explain it better here: http://diabetesaliciousness.blogspot.com/2008/06/f-normal.html

    Instead of fighting your diabetes, work with your diabetes. Own it, instead of it owning you. Owning diabetes takes a lot of work, both mentally and physically, and it can be scary. But it’s SO WORTH IT.
    Like Bernard says, don’t focus on everything all at once, start small and take it from there.
    Little ripples make big waves, especially in the diabetes world.
    Start with your monitoring your blood sugars, working on your numbers, starting with the first number of the day and take it from there.
    A CGM might really work for you so reach out to Dexcom or Medtronic. Have you worked with a Certified Diabetes Educator in the past?
    Have you considered talking to a counselor? I know that talking to someone really helped me find my way regarding both diabetes & life.
    As far as a job, get your diabetes on track and then really focus on the job front. I think if you can get your diabetes on track, you could apply as a Camp Counselor @ a diabetes camp, and do anything else you want in this life!
    Please don’t give up, Audrie.
    Hope floats and you are not alone in life or your diabetes!
    Kelly K

  3. Cindy
    Cindy April 27, 2011 at 7:36 am | | Reply

    If I could, I’d give Audrie a big hug and let her know she isn’t alone in the struggle. It is a struggle, no doubt. And it gets old and tiring. And the negative feedback when you’ve done your best and get a high number is disheartening.

    Consider joining a diabetes community in some way: there are online forums, or become an advocate for JDRF, volunteer to mentor a young person with diabetes in your community so they don’t go through what you went through, etc. There’s lots of ways to give and get help, and if the first thing you try isn’t a good fit, try something else!

    Also, do you have a creative outlet? I find that keeping a sketch journal (My drawings are horrible, but I don’t show it to anyone else!) helps. Sometimes I make collages, etc. It’s cliche and corny, but it does feel good.

    I’ve been saving my son’s insulin vials because I know some day we’re going to make something cool out of them, we just don’t know yet.

    I guess the thing I’d like pass on is that doing your best is excellent, love yourself and your body, and after that it’s just a number and not always in your control. What is in your control is to do the best you can.

    Oh, and diabetes sucks! No doubt about it. Sounds like a great line for a t-shirt!

  4. ralph
    ralph April 27, 2011 at 8:18 am | | Reply

    I have been there and done what you are going through. Going on my 61st year with it and can say I am doing well. You can too. Contact me if you like and I will run down some ideas that work for me and you might borrow some encouragement to help yourself.

  5. joan
    joan April 27, 2011 at 8:30 am | | Reply

    Andrea,
    I think it would be helpful to get involved with others who have type 1 diabetes and are living successfully and well with it. It can be done. Please contact a diabetes mentoring program (Jimmy Insulin is in Chicago and is the closest diabetes program I know of who offers mentors).
    Joan

  6. mollyjade
    mollyjade April 27, 2011 at 8:43 am | | Reply

    I’ve been there. It’s hard starting out in life, and it’s harder dragging diabetes with you. Find a healthcare team that makes you feel energized when you see them, and then be insistent that extreme highs and lows are not OK.

    My quality of life with diabetes drastically improved from when I graduated high school and to when I finally got established as an adult. I realized that I had the right to insist that I get good care. No school or apathetic doctor can hold you back.

  7. Lauren
    Lauren April 27, 2011 at 9:24 am | | Reply

    I know how you feel Audrie! Diabetes makes me so angry and it is so hard to manage. It is never easy and can be very overwhelming. I myself struggle with it all the time. I try to take one day at a time, and make small changes slowly. Hang in there, your will gain your life back once you do decide to take control, but it is exactly that. A decision to fight. We are all here for you.

  8. Lauren
    Lauren April 27, 2011 at 9:26 am | | Reply

    I have been there, and I am there every day. It is a challenge, but try making small changes slowly. Once you decide to take control, you will gain your life back. We are all here for you.

  9. Sysy
    Sysy April 27, 2011 at 9:51 am | | Reply

    Hi Audrie,

    Reading your words takes me back to how I felt at your age. I’m about to turn 28 now and am feeling so much better. I want you to know you can get through this. Being your age and having type 1 diabetes is extremely tough. You can read about my journey by clicking on my name if you want. A lot of us have been through periods of time where we spend a lot of energy emotionally fighting against the fact that we have diabetes. Eventually we learn to let go and completely accept the fact so that we can use our energy taking care of ourselves. Getting involved in the online community can be a great source of support for you. Take one day at a time and focus on the mere basics of carb counting and testing-just testing frequently will help so much if you’re able to. When I was at my lowest point, I couldn’t handle all the extra technology well but if it appeals to you then definitely see what you can do to get a CGMS. Reach out to any of us if you have any questions. We’ll be glad to point you to resources or just give you support. Hang in there.

  10. Mike Hoskins
    Mike Hoskins April 27, 2011 at 11:15 am | | Reply

    This makes me heart cry, because I so vividly remember being in that same spot right about that age (from a guy’s perspective, at least.) Audrie, you are NOT alone! We are ALL here for you and will do anything possible to try help. For me personally, I rebelled pretty hard in my teens and early college years and some mild complications began to set in by the time I was 22 or 23 or so. But it was really finding other voices, people who are LIKE ME, that really helped me see that it is possible to live with diabetes – despite it being what it is. I started off very slow, lurking on forums and blogs and interacting a little, before starting my own blog and writing about diabetes and owning it like Kelly K says. I made it a part of my life more regularly, and that helped keep me accountable. Maybe that’s something could work on your side, or some of the many forums and avenues that exist within this Community. We’re all in this together, and for me that has been life-changing and life-saving in so many ways. That helped me get my BGs down and calm down those early mild complications. Best your way. Please hang in there, and know we’re here any time.

  11. kdroberts
    kdroberts April 27, 2011 at 11:35 am | | Reply

    This was just posted on Diabetic Connect and looks like it would be worth a look, every little helps. http://www.diabeteshelpteam.com

  12. Sarah
    Sarah April 27, 2011 at 11:50 am | | Reply

    Hi Audrie,
    Know that there are many of us out here who have been where you are. You’re not alone. You can do this. I was diagnosed in 1980 at age 7, and am now 38 years old. Type 1 can feel completely overwhelming, like no one else in the world could possibly understand. Something I wish someone would have shared with me a long time ago is to just pay attention to 1 thing at a time; don’t try to change everything all at once, it’s too hard and no one can do that. For the thing to pay attention to first, I’d try the blood testing. See if you can set a # of times per day to test–maybe 2 or 4 times–and see how that goes for a week. Don’t try to change anything else, just pay attention to how many times a day you can test for 1 week. Once you have that numbers, it’s amazing how much you can learn about the next step you could try. Without the numbers, changing anything else is guesswork. Your drs. can’t help if they don’t have #s to look at, either. I went thru many years where I only tested twice a day, if that–when I woke up and before bed. (I didn’t think I was in denial, but I sure call it that now. I could have done so much more to care for myself.) Anyway, see what you think/feel you want to try, and above all else, be gentle with yourself. It’s a rough road, but we’re in this together. Seriously. I love the DOC so much–it’s the type 1 support group I never had. Click on my name here to see my twitter profile and contact me there if you like.

  13. Meagan Esler
    Meagan Esler April 27, 2011 at 1:03 pm | | Reply

    Dear Audrie,
    I too was ashamed of being different. For nearly sixteen years I hid my diabetes. I wouldn’t wish that on anyone. The best advice I could give you is to try to attend events geared toward fighting diabetes. You don’t even have to raise money to take part, you could volunteer to hand out supplies or cheer for the participants. It is there that you’ll meet others like you, and see how strong and proud we are. You’ll realize how strong YOU are. You’ll also see that you are not alone. We’re here for you. Reach out to the online community for support, we are a close knit family who stop at nothing to help one of their own. Best of luck.

  14. Cara
    Cara April 27, 2011 at 4:00 pm | | Reply

    When I was a kid my mom always used to say “take care of diabetes or it will take care of you.” That used to make me so mad. I hated it & didn’t always take care of myself like I should. Part of what got me back on the right track was finding & participating in the d-oc. Having people to talk to & share with helps give you hope. I wish you the best Audrie.

  15. Natalie Sera
    Natalie Sera April 27, 2011 at 6:32 pm | | Reply

    Audrie, I agree with what everyone else has said. And I think having an understanding endo, and a good CDE to work with are invaluable. My endo and CDE helped me get my pump set up right, and all the ratios correct.

    I now have a CGM, and it’s so easy to take a peek at it from time to time, and my BGs show it. Of course, if it shows a high or a low, you have to do a fingerstick to confirm it, but it takes the pressure off of testing all the time. I was always too embarrassed to test in public, and therefore just didn’t test, but it’s so easy to discreetly peek at the CGM. Then you can go into a private place to do a fingerstick.

    The other thing that has helped me immeasurably is a low-carb diet. I don’t have the wild swings I used to have, and I have far fewer lows. And my lipids are the best they’ve ever been.

    I’m not telling you what to do, but only what helped me. I’m hoping for the best for you! :-)

  16. June S
    June S April 27, 2011 at 6:48 pm | | Reply

    I agree with whoever it was above that recommended you try to fix ONE thing at a time. Yes, a nice fasting BG in the morning is an excellent goal. Also, do reach out to others here on the Diabetes Online Community. You are having one problem mentioned above which no one has addressed, though, and that is that you are having trouble getting insurance through your employer. Without insurance, it is difficult to find a decent endo and you could never dream of a CGM, which I truly believe you could greatly benefit from. I have lived with Type I for almost 39 years, but I was a teen rather than a child when I was diagnosed. I will tell you that I have chosen every job of my life based upon the sort of insurance it offered, rather than on what the job actually entailed. Fortunately, I love the job I’ve held for the past 16 years. I’m wondering what sort of college degree you have. I’d love to help in any way I can. Just have the moderator of diabetesmine give you my e-mail address, which I otherwise do not post here on the comments section. I’d love to help you in any way I can! Hang in there. You are NOT alone!

  17. T1 in Boston
    T1 in Boston April 27, 2011 at 9:37 pm | | Reply

    Hey sister! I was 15 when I got the bad news — the suckiest age of all to be different from everyone else! I hated it. It freaked me out. I was pretty upset. It took over 10 years to start to really face this illness (man, when I think of the recklessness during those first 10+ years… yowee!). I started by getting myself to test ONCE per week! Then I made a commitment to taking insulin when I ate (I told myself I could eat as much as I wanted, but I wouldn’t skip insulin for the food I ate, no matter). So that’s where I started. I’m 45 now and pumping, testing, CGM’ing, working, married, adopting a child, and going strong! IT GETS BETTER. It also helps to find a compassionate psychotherapist you can connect with, if you’re open to that. Check with your local hospital. We hear you and we feel your pain!

  18. Penny
    Penny April 28, 2011 at 6:19 am | | Reply

    I just wanted to tell you that there are many of us out here, living with diabetes and taking care of those who have diabetes. You are not alone, maybe that’s the most important thing you can hear right now. You are not alone.

  19. marion
    marion April 28, 2011 at 1:47 pm | | Reply

    I have been there as well…. 2 things that I keep coming back to when I bounce in to bad times.

    The first is a journal, hand written includeing blood sugar and food logs from when I was first diagnosised. When ever I get down about being diabetic and need reason/ a place to put it out there I write in that journal. It has all of the mistakes of bad boyfriend, drinking binges and Many of my really bad lows, what it is missing is the highs, I stop writing when I get over it and get my diabetes in control.

    the second for me is tons of digital reminders that I need to take care of myself. My pump beeps, my CGM beeps my phone texts me to check on my self, my google calender pops up reminders and the weight lost app tells me to write down what I eat. with these though I also have those who care asking what is going on. They piss me off a lot but they care so they ask.

    ok there is a 3rd that really has helped I have the best endo who is always an email away, even when she is on sabatical or materinty leave.

  20. Janet
    Janet May 3, 2011 at 10:43 pm | | Reply

    Sounds kind of crazy, but I totally admire how Angelina Jolie turned her painful childhood/early adult years around by volunteering to help kids in other countries. I know you have to work but maybe helping kids/teens at diabetes camp would be a way for you to have another experience of this time of life. You would probably feel a great deal of compassion for those kits and maybe your giving and caring to others would be healing for you. A lot of those young adults involved in our local camp swear by the experience….

  21. tiffany eckerle
    tiffany eckerle May 9, 2011 at 10:47 pm | | Reply

    This is my daughter. It made me cry reading it the first time and it makes me cry everytime I read it. Thank you so much for the books. She loves to read (even if it is about Diabetes).
    Since being out of the hospital she has done better testing and taking shots. I know she misses some but at least she is doing more. They did another A1C at the Dr last week and she is still at a 14. Since testing more and taking the humalog when she eats she has experienced morning lows in the 40′s-50′s. She is awaken from them and is able to treat them. It scares me to death because she lives alone.
    He Dr she sees at the clinic tends to get under her skin. I can see her point but I think most of it is teasing but at the same time it is kinda rude. He had her write down blood sugars for 2 weeks. The day of her appointment was a hectic day. She worked a NOC shift, lost her car door key and was locked out of her car, had to wait for a lock smith, and then was late for an indigent appointment regarding her April hospital stay. Then we barely made it to the Dr on time. They took us in the room and of course he wasnt on time. She remembered she forgot to write down her morning blood sugar and was writing it as he came in. So he accused her of making up every blood sugar. That was rude. Then he said she was not testing her blood sugar everyday at 2am like she wrote. She informed him she was since she works a NOC shift and is awake. Little comments like that make you not want to go to the Dr. At the same time since she is still without insurance and money to pay for anything but a sliding scale clinic she is stuck with him. The Dr she liked moved to another clinic. I told her still make an appointment with her we can drive there (it’s probably 6 miles away).
    The wound on her leg needs hyper baric oxygen treatments (i hope I got that right) at a wound care center. But they wont touch her with a 10ft pole due to no insurance. To me the leg looks horrible and I cry every time I see it. It’s hard for her to see on her leg with the spot it is in. It’s down right frightening what outcome she could be facing. Sad that a person has to go without proper medical attention because of lack of money. She works her butt off when she can work and then makes too much money but yet not enough money but to barely get by. She applied for food stamps to try and help and made $50 too much. They don’t take into account her medicine, multiple Dr bills ect.
    The day after the indigent meeting she received a letter that she made too much money for any assistance from them also. The silver lining in that is it sends us back to the hospital and she can apply for charity care. she has 3 different stays to apply for. Each about $10,000 not including the separate Dr charges.
    Good news for her also is her current job she started the end of March offers pretty decent insurance and it starts June 1st. The bad news is since she has diabetes it is a pre-existing condition so it wont be covered for another year. Hopefully she can plug along until then and keep taking one day at a time, one blood sugar at a time and 1 shot at a time. Another good thing is she can go choose HERSELF a family DR instead of the one with the smart remarks.
    She has a CDE who is the most wonderful person I have ever met. She has been with Audrie from age 7 until 19 when she lost her medical coverage. She was at every camp and because Audrie has seizures when she is low they were always cabin buddies. She is like another mom to her.
    They have a psychologist at this clinic but it is a first come first served 2 days a week and we were told good luck getting chose. I think she needs one specialized with diabetes myself.
    She is currently participating in a diabetes study and they have class one month and group therapy/support the next. I will encourage her to continue this as it is made up of young adults her age. I’m also going to encourage her to be a sweet kids camp counselor for little kids who dont go away overnight for the week camp.
    Thanks everybody for your kind words of support and advice. I just thought I would update you and let you know how she is doing. She is going to have to do this in baby steps and accept some days she will fail but the good days will out weigh the bad.
    Thank you again
    Audrie’s mom Tiffany

  22. June S.
    June S. May 10, 2011 at 1:32 pm | | Reply

    I read about Audrie today, and could not stop thinking about her plight. I am certain that the leg wound, unhealed, is contributing to the high A1C, and vice-versa. She is between a rock and a hard place.

    It seems to me that Audrie needs some NATIONAL publicity. If she were a kid and had cancer, you could have tried the MAKE A WISH FOUNDATION. Since she is not, I think she needs to get on 60 MINUTES or OPRAH.

    Awhile back, I had a story for 60 MINUTES that I decided not to pursue. After my initial story idea submission on their website, they sent me this in response: “If you wish to bring a matter to the attention of 60 MINUTES, you may do so in writing via postal mail. Please write to:

    Story Editor
    60 MINUTES
    CBS News
    524 West 57th Street
    New York, NY 10019

    60 MINUTES requests that all story suggestions be submitted in concise, written form. Please do not send any original documents or additional materials that would need to be returned. We receive a large number of story suggestions each week and cannot guarantee response or return of materials.

    Alternately, you may send your request via email to 60m@cbsnews.com

    If a 60 MINUTES producer does not contact you directly within 4 5 weeks, you may assume that CBS News is not going to report your story.”

    Perhaps you or Audrie could write to them, or maybe even Allison Blass or Amy Tenderich of diabetesmine could do so, on your behalf. Given all the talk about ObamaCare, for or against, health insurance dilemmas are big news nowadays. You might also try OPRAH. I’m sure her website has a link to a place with contact information. Good luck! I will have lived with Type I for 39 years this summer.

    June S.

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