Today a woman I know who recently started on a pump called me. She asked me, "Do you write for Insulin-Pumpers?" I replied that I do. Then I said something that surprised me even as it came out of my mouth:

"If I were in a gang, it would be Insulin-Pumpers UK."

I joined the UK e-mail list in the spring of 2001 as I was preparing to move to England for grad school. I thought I'd be a member for just a few months. I only needed to learn how the National Health Service (NHS) funded diabetes care, after all. Now it's been years and the answer is still not clear to anyone, especially the NHS! Through my personal struggle to obtain insulin pump funding from the NHS, IP UK list members offered information, support, and an attentive audience for my frustrations and triumphs. IP UK linked me to others lobbying for better diabetes care in the UK. I made it onto TV and into newspapers, even to Parliamentary meetings, through IP UK connections. Some of my closest real-life friends I first encountered through IP UK and I don't know what I'd do without them. I have been back in the US for the past year or so, but IP UK keeps me connected to my second homeland. It means a lot to me know that my experiences as a long-term pumper are of value to people other than myself as well.
"Melissa"

It's been 23 years, four months, and 16 days (give or take :) ) since I was diagnosed with Type 1 diabetes. I've been on the pump seven years now (in fact, exactly seven years the Monday after Thanksgiving). I remember how much more I enjoyed Christmas dinner with family that year, since I had so much more freedom and flexibility to handle my aunt's wonderful cooking! I don't remember how I first found Insulin-Pumpers, but I DO remember all the incredibly useful advice and support I found when I joined. Everyone who contributes LIVES WITH diabetes, EVERY MINUTE of EVERY 24 hours of EVERY DAY. Most of our doctors and CDEs DON'T. (Not to put them down, most of them are good at what they do, but they just DON'T have the same experience we do.)

Newly diagnosed? Here's what diabetes is.
Considering a pump? Read some personal stories.
Need a pump doctor? Find one, from Australia to the UK to the US.
Why go to all this trouble? Some very good reasons why.
Trouble with inserting a set? Watch video of how it's done.
Trouble with basal rates? Profile them.
Got a question -- search for the answer.
Can't find the answer? Join, post a message, and GET ANSWERS! :)

Recently, when I switched to a new pump and new infusion sets, I had trouble with the Quick-Serter getting tape gummed up on it. A quick search found other folks with a similar problem, and the answer to it was easy -- Goo-Gone, which I already had in the kitchen, or even just isopropyl alcohol, and suggestions for how to prevent the problem from happening again. No worries since. I remember being a little surprised the first time I got email from Michael about a pledge drive. It never occurred to me that there were costs associated with maintaining the website and the mailing list. I just never stopped to think about it. Here's the office where it all happens. Fact is, the office space is rented, and the computers and equipment cost money and need electricity to keep running. On top of that, there are almost 50 people who volunteer and help manage all this (BIG THANK YOU TO ALL OF YOU!).
"Cathy"

I'm a diabetes educator, insulin pump trainer, and pumper (10 yr). A patient (who taught me a lot about pumping when I was a relative newbie) recommended IP and I am forever grateful! I can't express how valuable the digests have been. Before I joined I relied on my own experience and what "my pumpers" told me, but IP offers so many other perspectives and management strategies! IP has helped me in my own diabetes management and makes me a better educator. Some of the members are so "in the know" that I can search the digest and chat archives for insight into new products or pump problems and find answers that I couldn't get anywhere else! I am so thankful for the time and energy the volunteers and members put into maintaining this wonderful resource.
"Diana"

Subject: [IP] glad to be back!!!!
I was in the process of moving the last few months and did not have access to my computer. I never realized until now how helpful this website was to me. It kept me constantly aware of how important good control is and gave me very helpful hints on how to obtain such control...

Thanks! I am so glad I found out about insulin pumpers.org!! Wow, there is so much support out there! I don't feel alone at all anymore! A lot of answers to questions right away! I hope I can help someone out like all of you!

I just wanted to say a big thanks for this site. I have been a diabetic for nearly 40 years--next month and I have learned more since joining the IP family than I ever learned from my doctors. I joined IP about a year ago and am amazed at the wealth of information I have gotten from others on this list. I am utterly amazed at the number of people who have had diabetes as long and longer than me! I never knew there were so many of us who had survived this long. I had never met another person who was a Type- I, except my brother and nephew. All others I had ever met were Type-II's. Thank you, Michael, for starting this site and for all the work you and the volunteers do to keep Insulin-Pumpers up and running.

May God bless you all for your dedication to this cause.
"Debra"

When doing some research on the Paradigm, I found the IP list. To me, it's a Godsend. I feel like I know what each one of you is experiencing!! My entire life I have been treated more like "glass" than a person. Don't we all get tired of "oh... they're diabetic" and the sad looks you get? Well here on the IP list I don't feel bad about having a disease. I for once feel good in knowing I am not alone. The few times I have asked a question, it's been answered immediatly. Faster than if I'd call my endo or educator!!

In response to the person who was recently diagnosed. We've all gone through tough times. We've all "hated" what is happening to us. I was 11 when I was diagnosed. I rebelled a lot in my teens. I only wish I had access to something like the IP list and the many friends I have met... back then.
"Myndi"

Subject: [IP] Re: hating my pump lately! - but loving this list
**Thank you, thank you** to all those who wrote back to the list or to me privately. I can't believe how much reading your emails has helped me feel motivated again and ready to keep trying. I don't know where it came from, but when it comes to diabetes I still have this mindset almost of being in school, and I *have* to do well, as if I'm competing with someone and I'm a failure if I don't do it right. (You would think after 23 years of this I would have lightened up, geez!) I never used to want to share my blood sugar charts with my health professionals unless they were really good--isn't that silly? Being on this list, and hearing about others' struggles has made me realize that it's not a test; it's not a "being good" thing; it's really managing a hell of a lot of variables every single day and just doing the best you can. So thanks for the reality check. And for being so generous with your encouragement and advice. You guys are great.
Hugs: {{{ IP people }}}

Subject: Re:[IP] To the Moms and Dads on the list
Thanks! I wish my friends and family would understand that. I would do anything to take this disease away from my son and have it myself. He handles everything so amazing, but I get so frustrated. I never realized how hard it is for parents to do this or deal with any other chronic disease. But we do it for our kids they make it work....This web site has been so helpful, I may not post a lot but I read everything. Thanks to all the other pumpers and the parents of pumpers.

Hi! I am so glad to have found this site. It has already been helpful in getting my 11 year old son a 504 plan at school and getting some tape tips for his new pump.....

Subject: Re: [IP] A successful appeal to the initial Ins. Co. denial
Katie is 10. She was diagnosed on November 8, 2000 . . . 205 days later, she was pumping insulin . . . Nine days after that Katie has proclaimed that she will "NEVER go back to shots" (and I'm intending to do everything I can to make sure she never has to!) . . . I am amazed at how great a positive impact pumping has had for her, for me, for our family in such a short time . . . I KNOW that our pump start has been so smooth thanks to everything I've learned from everyone here . . . there is no substitute for learning about the diverse experiences and perspectives of all you pumpers & parents. Thank you all!

Subject: Re: [IP] 2 days after surgery
I FORGOT TO say thank you again to all the pumpers who shared their experiences and gave me such good advice. Without the knowledge I was armed with the whole experience could have been totally different!!! I will try and write you all individually when it is easier to type. My first good experience in this hospital!! and boy does that say a lot!

Subject: Re: [IP] myhealthchannel
I hope others will also use this excellent website. It is really helping me a lot... and again I thank you for keeping this list growing strong. Someday I will write and tell you how IP was responsible for turning me into a confident , proactive diabetic after years of sitting on a shelf waiting for someone to rescue me. :-) IP may not be able to provide pancreas or islet transplants, but it is does very well in the realm of personality transplants. I am one of those lucky recipients!
:-)

Subject: RE: [IP] Do stubborn highs mean anything?
Thanks so much to everyone for your replies! I got some really good suggestions on things to check, including how soon he is going to bed after eating and looking for a correlation with the types of food. Another reply said their correction ratio increased when they are high - thanks for mentioning that! Michael emphasized to listen to my doctor and keep things consistent enough for a few days to spot a pattern. I think that is good advice - but it is so hard not to try to fix things immediately! Guess I will learn more patience ...
I really appreciate this list - we never could have made it without all of the great ideas we've gotten here! The support from this group is incredible. It is so nice knowing we're not alone in all of this :)
Mom to Ryan (4, dx'd 2/19/00 and pumping since 8/17/00)

Subject: Re: wonderful contribution
Michael -- I have to say that I feel my contribution is easily less than a tenth of the value I have gained from being a part of the IP community. In the four months since my daughter was diagnosed, I have learned SO MUCH about living with diabetes and about pumping. We're still in the process of advocating (very strongly) for getting my daughter on a pump sooner, rather than later (and not waiting until she's a teen, as her original endo insisted). What I have learned about the challenges and successes of so many pumpers has helped us immensely in having a clear conviction about what will be best for our daughter. Thanks to IP, we feel fully equipped to plead our case with a new, pump-friendly endo later this month. And, in anticipation of actually getting her on the pump soon, we feel that the knowledge we have gained about the realities of pumping (and all the tricks & tips that people have shared) have given us the best possible chance of not only success with the pump, but providing optimal care for our daughter . . . So the contribution we have made is merely a token gesture of appreciation for all the invaluable assistance we've already received and for the ongoing value we gain from being a part of the IP community -- our thanks go out to you and to everyone who make this invaluable resource available!

In a message you wrote:
<< Female, 44 year old, diabetic 40 years, started on the pump 2 weeks ago. Several unexplained highs on the pump. Lots of questions. >>
This is a good place to get those questions answered. My profile is about the same as yours except I've been on the pump for 15 years. I still learned more from these people in a few weeks than I have since 8/17/00)

Subject: [IP] 1 Year Pumping Aniversary! :-)
Happy pump-versary to me
Happy pump-versary to me
Happy pump-versary to mmmeeeeeeeeeeee
Happy pump-versary to me!
Today is my one-year Assimilation Day anniversary!
:-)
Hard to believe that a year ago I was starting out...but it sure has been an interesting learning experience. Throughout this journey I've learned a lot about myself and other people and I have definitely gotten healthier. I'd like to thank Michael, all the IP admins and everyone else on this list. Without you I definitely couldn't have met such great people, been able to vent (and therefore write long posts), and I certainly can say that it wouldn't have been as positive experience without your knowledge and support. So, from me, I'd just like to say two words: Thank You! :-)
Hopefully around this time next year I can say that my diabetes has gotten even sweeter to live with. 0;-)

Subject: [IP] Thanks from a new pumper
I want to thank all of you for your creative ideas, your supportive commentary, practical hints and careful warnings. I have no idea how I could have started this whole routine without your help.

My son was diagnosed with type 1 in September 99. He went on the pump the next summer. My wife has been active in this list for months and we have gained tremendous insight from the experiences of list members. I'm joining so that I can learn with her.

Subject: Re: [IP] ??? For Parents of Pumping "Tweens" (Ages 8-12)
Thanks to everyone for all the responses to my questions . . . There's no place in the world I could go to get the kind of "real life" data that you provided -- plus all the encouragement of great help, especially this early in the game . . .
You guys are great

I cannot thank you guys on this web site enough. Through the short time i have been signed up you have helped me enormously, in fact much more than anyone else over the last 20+ years of having diabetes. Through you all i have learnt that i am not the only one that has problems and struggle. I used to feel alone coping with this and was always made to feel it was only me with erratic bloods and going to the clinic was like being told off at school. You guys have now given me the strength to stick up for myself not be ashamed and fight for your rights!!!
thank you all so very much
"Lynette"

First, let me thank you for doing such a wonderful job on keeping insulin-pumpers up and running,... please be assured there are many of us who have learned so much from this web site. When I first started on my pump 3 years ago, I thank the person who told me about your web site. It was, and still is, a place where I always know my questions would be answered. All the members are wonderful at sharing their experiences. So thank you again for making this all possible. You are truly an unsung hero.
"Rose"

You guys are just great!!!!!!!!!!! I got on the internet today because I'm changing my daughters site, and I was amazed at the responses regarding my problem with the Emla Cream. Really...........thanks for all the responses. It really is great to have all the support out there. Nobody in my circle of family or friends really and truly understands any of this. I guess they can't. Thanks again, and I'm there for you with your problems if I can possibly help!
Have a great day!
"Sandra"

MC wrote:
Today I celebrate my one year anniversary of being on the pump. Let me tell you, that this past year has been the best out of the 34 years I have been living with this disease. I wish I did this much earlier in my life. Thanks to the list for providing a wealth of information and to Minimed for such great service.

Hear! Hear! Congratulations and thank you for your post. I celebrated my first year in April and you said it for me. I've been D for 32 years, love the list & the pumpers, am grateful & happy with MM. And so it goes....
Lee in Mt. Shasta with Beep, her Clear Paradigm

I just recently joined this list ... and I want to say Thank You to everyone who has posted something. I've been on the pump for about 9 months now, am have the best control ever, and experienced my first diabetic complication, retinopothy. Have had a few laser treatments and a vitrectomy 2 weeks ago. Emotionally, this really set me back. No more denial about being a diabetic, no more feeling like I was winning. This really scared me, and made me look back at the years of no control, little control, and ok control. I was so happy when I got this pump, and felt like I had a "cure", now I feel like I got my "cure" too late. So the depression was setting in, and someone posted about depression and I could relate to being embarressed about it, and then there was the post about the new lancet and doing finger sticks wrong all this time (that really did make me laugh out loud), and all the profiles coming in, there are so many of us, I am not alone, and people having diabetes since they were little kids, and teens, and people who are older and have had this disease for such a long time, anyway, I'm rambling on now, but my point is that reading this digest has really helped me end my pity party. I can't un-do the past, and I am not about to give up on my future. Thank you all for the strength you've given me this past couple of weeks.
"Karen"

My A1C results were 6.9 this week! Previous 7.5 and generally 7.1 or 7.2.. I am delighted. I switched to Novolog from Humalog and this was first test since the change. Insulin pumpers has provided knowledge and inspiration and motivation to keep trying.

Today marks a year for me on an insulin pump. What kind of a year has it been? Am I glad that I made the big decision to start pumping? What have I learned in the past year?

Without a doubt, the decision to start pumping was a very good one. My blood sugar control has been the best ever since I started taking insulin 35 years ago. While the pump obviously has not cured my diabetes, it sure has made it easier to effectively deal with it. My A1C's have always been in the good to okay range, but since I started pumping, they dropped from 7.9 to 6.7 and have been fairly stable since dropping to below 7. Hypoglycemia had been a real problem for me in the past and while it has not disappeared, it occurs much less frequently and my awareness of low blood sugar is much better. I feel better, have more energy, can work and play harder and have more enthusiasm for life. The freedom that the pump has given me to control my life (rather than diabetes controlling me) is wonderful. I can sleep late on a Sunday without problems, I no longer have to worry about eating on a schedule and eating to "feed a low" rarely occurs any more. The pump is a wonderful tool for my life and like Sara once stated here, "I will never give up my pump until they pry it from my cold dead fingers!"

What I have learned in the last year has much to do with all of the messages generated by the participants on this forum. Because I have been working 12-13 hour days for the last 9-10 months, I haven't had time to write much to the forum and I don't always have time to read the digests that I receive several times a day. But when I do read the digests, I almost always learn something from the messages. Having this source of knowledge and experience so readily available is a real treasure. Hopefully in the future I will have more time to be an active participant in the forum. I thank all of you for your contributions and I especially want to thank Michael Robinton for putting together the web site and doing such a great job of keeping it going. Fortunately, I live and work near Michael in the San Francisco Bay Area and have had the opportunity to meet him a number of times. He is amazingly dedicated to Insulin-Pumpers and likely spends more time working on it than he should.
"Bob"

I live in a remote part of N Wales, my nearest hospital is 50 miles away. I have been using a D-Tron plus for a year now. I had a half day training from the pump rep and then he was at the end of a phone for as long as I needed him. I had an appointment with my consultant last week, the last time I saw him was was a year and a half ago. He was as much use as a chocolate fire guard. When I saw him he said "I was not a good candidate for a pump, menopause would not affect my BG and Lantus was too expensive to try on me." I later got in touch with my DSN who arranged a trial on Lantus to no avail and then arranged for a 3 month trial with Disetronic {insulin pump}. The fight for keeping the pump and funding was left to me. But I won. My GP is very supportive but his knowledge is limited to what I tell him.

Most of what I know comes from this forum and I am very grateful it exists.
"Joyce"

...I've been here for about two months. I have learned so much from everyone here. I ran into a slight problem the other night and remembered what was said here and everything turned out good. You will learn a lot, and deal with good personalities. Someone is bound to make you smile, laugh and teach you something every day. It's a good place to be if you're a pumper...
"Renee"

> > I would like to know some before and after HbAc1's.  
> > I would like to see what a difference the pump makes.
> >
>
> See: http://www.insulin-pumpers.org/about.shtml#hbA1c
>
> This set of graphs show the dramatic effect that pump 
> therapy has on hbA1c's.

The dramatic effect on me was joining the 'list and learning how to use the pump I had been using the previous 7 years. It wasn't the *pump* that made the difference - it was the education. YMMV!!

My A1c's (starting in mid '80s) ran consistently from 9's - 11's and once was 15.6.
After 'list = low 6's.
Jan (64 y/o, dx'd T-1 11/5/50, pmpg 8/23/83)

My daughter, Jessica is 8 years old, and has been pumping since the end of June (I credit everyone on this list for all of their help and support to her getting on the pump so new to diabetes and at her age) It has been the absolute best decision we have ever made for our daughter. It has given her her life back .
"Cindy"

IF THE INSULIN PUMPERS WEBSITE DID NOT EXIST......

..my daughter would not be pumping as I would not have written a tear stained letter to Erica's endo begging her to allow us to try insulin pump therapy ( early 1998) after being refused a few months earlier. I was strengthened by the support I received from my fellow Ipers. Erica would have been the first child using insulin pump therapy in Nova Scotia at the time.

...my daughter would not be pumping as I would not have met the wonderful people who helped me wage a 101/2 month battle with insurers to earn coverage for the pump & pumping supplies. Letters, emails, phone calls, it was humbling. Erica finally started the pump in March/99

... my daughter would not be pumping as two glorious months into insulin pump therapy, the bottom dropped out of our life when her sites started deteriorating after 24-30 hours. No way could we change sites every day. She was so little. My fellow IPers came through with a tip about mixing insulins which gave us back the 3 day site. Erica's endo has suggested this idea to other patients of hers.

...I would not have found such a up to date means of self-education and sharing of experiences.

...I would not have connected with many fantastic people, from all over the world. Never would I have had a chance to share successes, fears, goals, support, laughter, tears, frustration and information with these amazing people. Many have become close cyber friends while others we have met in person too!! BONUS!

...I would not have met two people, in particular, who have enriched my life in too many ways to mention. I met JB (mom of a pumper) through fellow Ipers (R&E) who put us in touch with each other. I met DP (adult pumper) through postings on the IP. My whole family benefits by their presence in our life.

AND... IF ERICA WERE NOT PUMPING .....

....we would not have been interviewed by the CBC (Canadian Broadcasting Corporation) for a nationally televised health show. They found me on the web and called to get a 'little' information on insulin pumps. A quick call turned into a long conversation and an invitation to take part in the health show about diabetes. We were the Pumping segment. The spin off from this was exciting and far reaching. Erica became a celebrity!!

.... I would not have started a pumping webpage of our own www.canadianbutterfly.ca. The need to share what we had discovered was too much for me. I had to let people know how pumping had changed our lives. It wasn't too good to be true!!!

... I would not have started a support group as a means of helping new pumpers, adult and child, make the transition. Our other goal was to inform people about pumping and invite them to our meetings. Most of the people who have attended meetings over the past year, as a way of learning more about pumping from *real people*, are now pumping themselves or have a child pumping. YEEHAW!! A few months later there were more than 60 children who were pumpers out of the clinic that originally wouldn't consider it for Erica...

... I would not be the advocate I am now for diabetics. It is an awesome feeling to have a hand in helping others. A BIG bonus from that is the 'paying forward' these people are now doing themselves. A ripple into a wave into a tsunami...

AND THE NUMBER ONE REASON INSULIN PUMPERS HAS MEANT SO MUCH TO ME (I feel like Letterman ). . . . .

I was on hand to watch my daughter turn into a butterfly, overnight.
B r e a t h t a k i n g . . .

Bless you Michael, and all the gang!!

Sincerely,
Barb Chafe
Mom to Erica, a Canadian Butterfly

I have a 9 year old son that's diabetic and on the pump. This list and the pop list has been a life saver to me at times. The knowledge I've received and the help have been better than any doctor could ever offer me.
My daughter (who is, shall we say older. Well, actually she's 32. I remarried and started over with Johnny) had asked me what I wanted for Mother's day. I really couldn't think of something that I really wanted. Then I read your letter and suggestion. How perfect! I asked her to donate money in my name to Insulin-Pumpers. I'll be sending in a donation myself on Friday.
I know it's kind of late for Mother's Day, but I know that there's other's out there who have children that are, just now asking Mom's what they want for mother's day. You can suggest the same thing.
"Dianne"

Thanks for such a great resource. There isn't anything out there comparible.
"Carol"

You are a sweetheart and saint and a Nobel human being.

Sometimes I think about all you have done for insulin pumpers, and how many people have benefited for so many years and it blows me away! You will always have a home in my home and so will your family. I will always be eternally grateful that you created the IP list. I was so alone when I first got my pump six years ago. I had no one to share my excitement and fears with, and I knew no one with a pump. I kept looking for someone on the net and then...

There You Were!

The mental and physical and all around pumping support I have received from you, as well as the people on this list, have had a major affect on my success in pumping. This list has been a positive influence on my mental well-being, my learning about sites and silhouettes, and so many "how to do it" shared experiences. I mean who else but pumpers know the thrill of a great hbaic?

I have made some great "net pals", many of whom I hope to meet in person someday. You are at the top of my list, Michael, and to have so selflessly given your time and yourself is worthy of not only a medal of honor, but the highest award possible.

Your sharing of information is always exactly what is needed, well written, "spoken" in exactly the right tone, with back up references when needed!

The IP list is responsible for many successful pumpers! You should be knighted by Minimed, Disetronics, and Animas all! But mostly, everyone one this list needs to send money so we can keep this list going. I need it!

Thank you, Mr. Robinton, for who you are and what great things you have done to benefit mankind!

with loving gratitude, I will be in your debt forever.
"Bonnie"

I want to thank all of you for your creative ideas, your supportive commentary, practical hints and careful warnings. I have no idea how I could have started this whole routine without your help.

I've been pumping for 2 wks now and had my share of weird and funny (not at the time) moments. I got a semi-gusher the first site I did, and I knew not to panic, thanks to you. Today I put in a new site (took only 20 minutes, not 1 hr and 45), messed up the adhesive cover, so with meter on table and site with no adhesive, turned around to get another adhesive tape. pulled the meter on the floor and needle in the site pulled out, I wondered what to do, besides swear (I didn't want to start the whole "fill the syringe, get the bubbles out, prep the site, prime etc". I took a new infusion set, quick released and connected the new site end to the "old" pump end, primed and inserted again. I never would have used my common sense had I not read similar solutions from you all...
Thanks, Kathie W.

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