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25 Responses

  1. Laura
    Laura April 18, 2007 at 7:49 am | | Reply

    Know how ya feel Amy. I don’t wear the pump but having to lug around all the extra diabetes “Paraphernalia”, I can surely relate. When I buy a new purse I have to make sure it is big enough to accomodate my emergency can of sugary soda, my monitor and a little compartment for extra syringes. I have come accross some very pretty “GIANT” purses though!

  2. Scott
    Scott April 18, 2007 at 8:28 am | | Reply

    I appreciate your perspective, but think of how annoying it is carrying all this crap around as guy with a “man bag” full of meters, test strips, glucose tabs, extra needles or infusion sets, etc., etc., etc.). At least you can throw it into a purse and not look like a stranger from a faraway place or God knows what else. I thank H&M for mass merchandising messenger bags, but can’t help but feel like its a purse!

    Regardless, I wrote my own letter to the Chairman & CEO of Eli Lilly on what his company needs to make our lives easier from a design standpoint. I would hope after the company’s earnings plunged 39% during Q1 2007 and ironically, they’ve lost 39% market share in the insulin market (to 43% in 2006) during the past 6 years that they might just take my post seriously, but alas, that has not happened. But we should pursue nevertheless!

  3. Maureen
    Maureen April 18, 2007 at 8:38 am | | Reply

    Amy, my son was diagnosed just after his 7th birthday, and always says that he can’t remember anything before he “got” diabetes. We go through everything you touched on in addition to growth spurts, puberty, sports, field trips, ignorant grownups, defiant school systems etc…Luckily, my son doesn’t let it get in his way, he’s a kid with diabetes, not a diabetic kid. Plays ice hockey(that’s very tricky with a pump!) and three other sports. Our family has learned rocket science trying to keep up with all of the “stuff” necessary to care for a diabetic child. We work around it well, but why the hell should a kid have to deal with this at all? My answer was to become an advocate for them. I work with the JDRF and the ADA. Anyone can do this, just a matter of getting involved. No one will ever be able to say that I didn’t try to do whatever I could.

  4. Erin
    Erin April 18, 2007 at 8:39 am | | Reply

    Any interest in a pancreas (http://www.flickr.com/photos/kirinqueen/414694239/) to hold all those diabetes supplies and gadgets?

  5. Tom
    Tom April 18, 2007 at 10:02 am | | Reply

    Wow, Amy. I was actually just thinking about this last night and was going to make a post about it today. I still am going to most likely, when I find some free time. I was diagnosed 3 months before my 18th birthday, so I can clearly remember what life was like without my pump and without all the counting and worrying.
    We definitely need to start making some noise. We can’t let this be a Diabetic Dictatorship, it needs to be a Diabetic Democracy.

    This post really made me start thinking again. About the past, about the present, and definitely about the future of all of the diabetics out there.

    Be on the lookout for a post later today.

  6. Jay N.
    Jay N. April 18, 2007 at 10:18 am | | Reply

    I have days like this too. I’m 26 and developed Type 1 last May (coming up on my anniversary). Sometimes I get so mad about this disease…especially when it comes to dealing w/ my insurance company on supplies. For someone that had never spent a minute in the hospital, suddenly being thrown into a world of doctors, blood tests, pharmacies and EXPENSIVE supplies, it can be SOOOO frustrating. Just know that your not alone and that there are 20 million of us feeling the same way.

  7. Michael Park
    Michael Park April 18, 2007 at 10:23 am | | Reply

    I wish it was socially acceptable for guys to carry purses.. I guess I have to move to Europe…. Anyway, I carry around my backpack constantly – whether I’m actually going to university or not.
    Convenience is not just a benefit though – when I was young and impressionable I stopped carrying around my tester with me simply because friends made fun of me for always having a purse with me.
    And yes, everyone has second guesses about being diabetic, they just show themselves differently at different stages. Be thankful that you’re not in the young and stupid category where you might actually convince yourself for a day that you’re not diabetic.
    Sometimes that second guess inspires me that there will soon be a cure, or reminds me that making lifestyle changes can make management even less intrusive. Sometimes it makes us bitter.

  8. Chloe B.
    Chloe B. April 18, 2007 at 10:34 am | | Reply

    As a 30 year old, just diagnosed last month, I’m now on such a small dose of insulin now, It’s very easy to think that it will go away. I’m constantly still thinking it has to be a big mistake, and wrestling with myself on whether to keep taking the small basal dose. If I stop taking that, will anything truly bad happen? I secretly believe my body will pick up where it left off, when it was considered normal, especially with my “Oh so close to normal” sugars I have now. Maybe I won’t ever be hyperglycemic again. I think how do they really know it’s not transient?!

  9. Lili
    Lili April 18, 2007 at 1:55 pm | | Reply

    Chloe, I can’t speak for everyone, but I have LADA. Over the past year I’ve seen my insulin doses go up from 10 units a day to 30 units a day. That’s how I know it’s not transient.

  10. AmyT
    AmyT April 18, 2007 at 2:45 pm | | Reply

    Ladies: I have LADA, too. Like Chloe, I needed only tiny doses for about the first 2 years. Up to small-ish doses now, but my BG certainly skyrockets if I don’t get the dosing right. Definitely not transient…

  11. Emily
    Emily April 18, 2007 at 4:23 pm | | Reply

    I can definitely identify with all the posts. I was diagnosed at 19 and am 23 now. I’ve been on 40+ units a day since the very start. It is difficult to deal with having a pump attached at all times – even more so thinking about the future with it. My upcoming wedding, my first “real” job, pregnancy and children…it’s overwhelming. I may be overly optimistic, but I feel like they’ll definitely make this better in my lifetime. I don’t know how I’d imagine life if I didn’t think that way!

  12. Scott K. Johnson
    Scott K. Johnson April 18, 2007 at 7:17 pm | | Reply

    I often think about just how crude this awesome technology is.

    I mean in order to check my blood sugar I have to stab my finger and bleed on something.

    To deliver insulin I have to violate the skin and tissue that protects me in a rather violent manner.

    To wear a CGMS I would have yet another “thing” sticking out of me.

    Sure, it’s all great, and keeps getting better. But you can’t convince me that it’s not crude and primitive.

  13. vicki
    vicki April 18, 2007 at 8:32 pm | | Reply

    It may be crude and primitive but it’s a heckofa lot better than 50 years ago! Or even 20 years ago. And after 10 years of living with LADA, I want to let you all know, after a while taking care of your diabetes becomes second nature. And the rewards of taking care of it are NO AWFUL COMPLIATIONS. Which deefinitely makes it worthwhile.

  14. Sarah
    Sarah April 18, 2007 at 9:09 pm | | Reply

    I have had Type 1 since since I was in diapers. Lucky since I don’t know any different, unlucky because my fingers are sore, and I am running out of places to inject my insulin/put my pump sites due to scar tissue. I have had numerous seizures prior to the pump since I am so insulin sensitive. I have tried my best to manage, but I feel a good 40 years older than I am. I am tired and burnt out. Nobody thinks anything of me having Type 1 diabetes, since I look “normal”.

    Little do they know that I am sometimes scared I won’t wake up in the morning, so I always make sure I look “nice”. :)

    I do agree that methods to treat this disease are lacking. With technology increasing in other areas contrasted with the T1 medical breakthroughs that never seem to make it to that “5 years time” mark, it can be downright depressing. I agree with you Amy, and all of us Type 1′s understand.

    But when I get down like this, I think of those with T1 who live in Africa, having to walk for hours to the nearest free clinic. to get enough NPH or R insulin to last them the week, probably knowing that they might die right then and there if the clinic has none.

    I also get upset because I have always wanted to work overseas helping these same people, but my damn T1 and the risk is what holds me back!

    Across the world, Type 1 diabetics needs a better solution. Insulin is not a cure, and insulin is not enough.

  15. lee
    lee April 19, 2007 at 2:47 am | | Reply

    I sometimes still genuinely bevlieve I will wake up one day and find out my diagnosis was all a mistake (diagnosed at 28 last year). Then sometimes my body reminds me that it definately was no mistake, and I am reminded of all the dangers involved with it. That is when I get angry that I now have to deal with it all, I mean, what did I do to deserve this?? But I guess I am luckier than some.

  16. Jim
    Jim April 19, 2007 at 6:20 am | | Reply

    Hi Amy, I can relate to you. 99% of the time I do not even think about the things I have to do to stay healthy. I just do them, almost automatically. Yet from time to time it hits me. I will have to do this for the rest of my life. It is times like that, that I wish I was “normal” and could eat anything I wished and not have to worry about the consequences.

  17. Dave
    Dave April 19, 2007 at 6:53 am | | Reply

    I was diagnosed with diabetes almost a year ago when I was having a pre-op blood test. Now I am on to my second endocrinologist who is awesome and is doing a great job with my treatment plan. For the most part I have excepted that I will have full type 1 diabetes at some point. Currently my body still produces some insulin so I have a bit of a cushion. Tomorrow I am meeting with a nurse to finish the final steps to start using my new Minimed 522. I am very excited to start using it. I am over giving myself 6 or 7 shots a day and I want to master it so that I can have an even better control over my BG. I am sure I will get annoyed at times but I know that it will be better than sticking myself with a needle every day-pricking my finger is bad enough!!!!

  18. Justin
    Justin April 19, 2007 at 8:05 am | | Reply

    I actually don’t mind the shots, it’s the rigidity/schedules/etc. I could say that it’s my personality, but in reality, I am pretty sure that I am in a prolonged period of denial. I would love to be on the pump, but can’t seem to even keep records long enough to appease my endos. Did any other pumpers have to jump through all these hoops? If anyone could email me with their experiences, I would be thrilled. Thanx!

  19. my diabetic life
    my diabetic life April 19, 2007 at 8:47 am | | Reply

    Living On

    I got complacent and haven’t been doing what I should be doing in order to control my diabetes. Reading Amy’s blog has made me want to pick this up again and make my voice be heard.

  20. birdie
    birdie April 23, 2007 at 5:34 pm | | Reply

    Oh Amy, I have felt this way many times before. A sense of what is close to shock, when I remember, yet again, that this is not a curable disease. That this is the way I must lead my life. I have to catch my breath at these moments, because I am actually momentarily breathless in the realization of that truth. Of course, we all go on, but it is amazing how, even after 20+ years, I can still be shocked by the fact that it is not going away anytime soon. Shocked and always a bit sad. And then the morning comes and there are dogs to be walked and beauty all around and I forget. Until the next time, which thankfully, is usually a bit farther away than the last time!

  21. pauline
    pauline October 22, 2007 at 3:13 pm | | Reply

    I am a type 2 diagnosed 16 yrs, and on my pump 5 years. Last week, i went to a “taking of your diabetes” or tcoyd program. Taking to a therpist , who wrote a book about diabetes burnout, I told him , i threw it out, BOY did his eyes bug out. It is scary and overwheleming to think long term care of this disease. I am so sick of being tangled in bed with it around my arms, legs chest and mouth,and yeah, it does hurt when it lands hard on your face. but a person has to take one day at a time or even take one step at a time with this disease.i get burned out and then next week, i feel privledged to have this wonderful tech. in my life. unfortunetly , thank you for being here. you all help me and hope each other.

  22. Lina H. DeHoyos
    Lina H. DeHoyos September 20, 2009 at 11:26 am | | Reply

    Amy, I am a diabetic for 18yrs. I’ve had to learn the hard way on how to handle my illness. I’ve had burn outs seems like everyday, but I had small children aged 2ys apart 4 of them,divorced and single mother. I’ve had to do it alone sweety but i would not have change anything, at all.I have a pump, but not an insulin pump, a morphine pump that has helped me with my back injury awhole lot. I could not have been able to walk at all. So I can relate how you feel about your pump(insulin)and how it affects you. but you just have to have faith and it will be alright. Remember, in the morning things will look different,brightness, cool weather, and off to your reg. activities. Everything is alright!!!!!!

  23. Lina H. DeHoyos
    Lina H. DeHoyos September 20, 2009 at 12:19 pm | | Reply

    Hello Amy, I have been a diabetic for 18yrs. I can understand how you feel about your insulin pump. I have a pump but a morphine pump for my back pain. Most of the time I am checking my BG readings, six times a day,my fingers, by now, are hurting so bad. I just want to quit, like you I have burn outs. Then I remember that things change by morning and I forget all about my burn outs and I am alright. Just remember things are better in the morning. Hang in there everything will be alright.

  24. Bob Cavagnaro
    Bob Cavagnaro March 2, 2011 at 9:25 am | | Reply

    I am only a few years removed from the original posting but I am new to conversations on the Diabetes Mine network. It’s a disease from my standpoint (type 1) that is working for me as I keep tight reigns on my insulin and exercise schedule. As a 30+ year diabetic it is a disease that I worry about in the next 25 years as I’m going to be older and a friend of mine had a car accident and never got his good health back. Open conversations on the subject is a great forum for all of us to keep updated and gain knowledge.

  25. Erin
    Erin August 26, 2011 at 1:34 pm | | Reply

    I was diagnosed about two and a months ago. T1 runs in my family like wildfire so when I was diagnosed (at age 28) it didnt really surprise me. I spent 5 days in ICU, the first 2, nothing bothered me, no big deal, but the third day, I was a mess, I cried over everything, I was in the “why me” state. I have come a long way in 2 months. I inject 4-5 times a day (before this I was such a needle phobic I didnt go to doctors and when I did I passed out) But it is second nature to me now. What I find the hardest is, when the people in my life dont understand how hard this disease is. (making sure I have everything I need before I leave the house, going out to dinner and only being able to eat certain things. The way you feel when youre high or low. The days when you just dont want to do it anymore) People look at me and see nothing wrong. I look amazingly healthy.

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