December 8, 2009

Sweet Invisible Body: Reflections on a Life With Diabetes

by



Lisa Roney author of “Sweet Invisible Body: Reflections on a Life With Diabetes”

Chat with an author who broke new ground when her autobiography “Sweet Invisible Body: Reflections on a Life With Diabetes” was first published in August 1999. I’m speaking of none other than Lisa Roney. As some D-Bloggers may recall, Kerri interviewed Lisa back in February. I’ve had the pleasure of exchanging periodic e-mails with Lisa since 2005.

Lisa, who grew up in Tennessee, was diagnosed with type 1 diabetes in 1972 at age 11. Since then, diabetes has turned her life into an ongoing balancing act. She began her book after deciding that society had denied diabetes its stature as a serious illness. As she told Kerri in February, “There were books written by the deaf, the blind, those with cancer … but nothing about diabetes.”

Lisa told The New York Times reporter “As I tried to learn to understand myself, it was natural for me to look to books and there was not much out there. All kinds of other ailments have figured in literature and cultural studies, But for some reason, diabetes was not included.”

“Sweet Invisible Body” was the one of the first books published during a relatively short timeframe earlier this decade regarding life with diabetes. (Deb Butterfield’s “Showdown with Diabetes” was also among the books reviewed by The New York Times back in 2000, as was Andie Dominick’s “Needles: A Memoir of Growing Up With Diabetes”.) Since August 2003, Lisa Roney has been a professor who is on a tenure track at the University of Central Florida.

Lisa has told me that since her book was first published, she has since become a convert to the pump. She adds that her pump has made life much more “normal”. Although she says “It’s still a pain, and there are always issues with MiniMed, but I do love the pump. I sometimes even lose track of time now, and though that’s not something that most people would think of as an accomplishment, I do!”

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*** (16:41): Welcome to Lisa Roney Chat, Lisa Roney!

AllisonBlass says to (16:41): Thanks Krista.

AllisonBlass says to (16:41): Hi Lisa.

sstrumello says (16:41): Hi Lisa!

Lisa Roney says to (16:42): Hi!

Clay says to (21:15): LIIIIIIIISSSSSSSSAAAAAAAAAAAAAAAAAA

AllisonBlass says to (16:41): Thanks Krista.

AllisonBlass says to (16:41): Hi Lisa.

sstrumello says to (16:41): Hi Lisa!

Lisa Roney says to (16:42): Hi!

nichole says to (16:42): hello

sstrumello says (16:42): In case you didn’t know it from the user name, this is Scott

Lisa Roney says to (16:42): I’m new to chatting, so please excuse any slowness!

Lisa Roney says to (16:42): Hi, Scott–I could see your name.

AllisonBlass says to (16:43): It’s easy. It’s like email, but faster.

Lisa Roney says to (16:44): I’ve used Trillian instant messenger before, so I should be fine. I just always feel that technology might go nuts on me.

sstrumello says to Lisa Roney (16:44): How was Utah?

Lisa Roney says to (16:44): Utah was fabulous!

Jon says to (16:44): Welcome Lisa

Lisa Roney says to (16:44): Thanks.

sstrumello says (16:45): Kerri will be here soon, she posted notice of tonight’s chat on her blog today

Lisa Roney says to (16:46): She e-mailed me, too, that she would join in.

sstrumello says (16:46): Speaking of Kerri … welcome Kerri!

sixuntilme says to (16:46): Hey guys.

Lisa Roney says to (16:46): Hi, Kerri.

sixuntilme says to (16:46): Hi Lisa!

sixuntilme says to (16:46): Am I late, or are we just getting started?

sstrumello says (16:47): No, just miscellaneous chatting at the moment

Lisa Roney says to (16:47): I was just early because I wanted to make
sure all worked well for me, so we haven’t really started yet.

sstrumello says (16:47): we’ll start in about 5 minutes

Jon says to (16:47): hey kerri, you are right on time

sstrumello says (16:48): maybe less than 5 … my clock on my PC is a few minutes slow!

sstrumello says (16:49): I switched my avatar to coffee … more appropriate for this time of day … LOL

*** (16:49):Welcome to Lisa Roney Chat, Lloyd!

AllisonBlass says to (16:49): Hi Lloyd!

Lloyd says to (16:49): Hello

sstrumello says (16:49): Hi Lloyd

Lloyd says to (16:49): Thanks for the reminder Allison

Lisa Roney says to (16:50): Mine is also coffee, which I love but drink only in the decaf formula. Maybe I can pretend that it’s not coffee but
rooibos tea, my favorite lately. Hi Lloyd and hi Allison.

sixuntilme says to (16:50): I’ve never had rooibos tea.

AllisonBlass says to (16:50): You’re welcome.

sixuntilme says to Lisa Roney (16:50): Did my message make it out?

AllisonBlass says to (16:51): I can’t understand decaf coffee. I don’t really like the taste, so if I didn’t drink it for the caffeine there would be no point!

Lisa Roney says to (16:51): Rooibos is aka red tea. Teavana has a wonderful rooibos chai–no sugar and naturally caffeine-free.

sstrumello says (16:51): Yes, many thanks … people tend to trickle in around 9:00 PM EST for most shows

Jon says to (16:52): we usually get a few stragglers showing up a little later too

Lisa Roney says to (16:51): First confession of the day: caffeine makes me crazy.

sixuntilme says to (16:51): Caffeine makes me happy. {smile_smiley,smile_smiley}

Lisa Roney says to (16:52): Everyone else I know is like that!

sstrumello says (16:52): I will start with introductions. Please join me in welcoming Lisa Roney, whose autobiography “Sweet Invisible Body: Reflections on a Life With Diabetes” was a first in diabetes-related publishing!! Lisa, can you update everyone on what you’ve been up to since you wrote your book in 1999 (it was 1999, wasn’t it?)

Lisa Roney says to (16:55): Yes, the book came out in 1999. I went on to finish my PhD in American Literature at Penn State, then went to Bucknell Univeristy for two years, and then came to Orlando FL to teach at UCF. Other big news: I got an insulin pump about six years ago.

kristaw says to (16:53): hi lisa

Lisa Roney says to (16:53): Hi, thanks for having me here.

Jon says to (16:53): welcome lisa, thanks for being here tonight

Lisa Roney says to (16:53): It’s a pleasure.

sixuntilme says to (16:55): What kind of a pump are you using?

Lisa Roney says to (16:55): A Minimed Paradigm.

kristaw says to (16:55): i am trying to get on one but doc won’t okay

Lloyd says to (16:56): I am a T2 with a pump

Lisa Roney says to (16:56): Any reason? Or is doc just behind the times?

sstrumello says to kristaw (16:56): That’s really crazy he won’t approve one

kristaw says to (16:56): not sure i have no symptoms anymore so he is a little nervous

Lisa Roney says to (16:56): No symptoms?

kristaw says to (16:56): i have no awareness

Lisa Roney says to (16:57): Have you done hypoglycemic unawareness re-training? I had to go through that once a few years ago and it really helped me.

kristaw says to (16:57): what is that?

Lisa Roney says to (16:58): I don’t remember very clearly, but I had to estimate my blood sugar before every time I tested it, just to retrain myself in terms of how I was feeling. To raise my awareness of it.

sstrumello says (16:59): We did a chat with one of the developers of Blood Glucose Awareness Training (BGAT), Linda Gonder-Frederick. Check it out in the archived transcripts!

sixuntilme says to (16:59): I’ve had people tell me to run a little higher intentionally to re-engage my symptoms. There are a lot of doctors, and insurance companies, who make you jump through plenty of hoops to score a pump.

AllisonBlass says to (16:57): Lisa, why did you decide to write a book about your life?

Lisa Roney says to (16:58):Oh, I think I just had been thinking about diabetes for so long and had not found anyone who understood it or found it interesting. So I wanted to explore what it meant.

kristaw says to (16:59): not working with me i lost mine when i had my first son 11 years ago

Lisa Roney says to (17:00): And I have a friend in Massachusetts–diabetic about 30 years since age 6 or 7 who had terrible low blood sugars. Now, on the pump, he is much better–no more wandering his neighborhood naked at 3 am.

kristaw says to (17:01): never done that before, but the EMT knows my name and history by heart

sixuntilme says to (17:01): Lisa, did you find that pumping improved your control?

sixuntilme says to (17:01): Versus injection therapy?

Lisa Roney says to (17:01): He had a terrible time. His wife was at her wit’s end.

sstrumello says to Lisa Roney (17:00): That makes me feel better, I never did anything that crazy when low!

Lloyd says to (17:02): Love the pump, it has done wonders for me.

sstrumello says (17:02): The BGAT program will be online soon at <a href=”http://webcenter.healthsystem.virginia.edu/bmc/bgathome_temp/index2.htm”>http://webcenter.healthsystem.virginia.edu/bmc/bgathome_temp/index2.htm</a> but I personally found it better to attend with others!

Lisa Roney says to (17:02): Yes, pumping has increased my control a lot. I think I have fewer severe low blood sugars with it. My only problem is weight, and that is probably partly hypoactive thyroid, which I just had diagnosed and which is not yet controlled well.

sixuntilme says to (17:04): Ah, bad middle of the night lows. I started pumping for the same reason.

kristaw says to (17:02): hi sliderule

Lisa Roney says to (17:02): Hi Mikkili and Sliderule!

Mikkili says to (17:02): hi

Lisa Roney says to (17:03): In fact, one of the reasons my doctor put me on the pump was because of bad middle of night lows.

sstrumello says to Lisa Roney (17:03): Lisa, you are on a tenure track. Any idea when you might become a tenured professor?

Lisa Roney says to (17:03): Ugh. Tenure. I’m up in two years. It’s a stressful time of life.

kristaw says to (17:03): good luck with that lisa it sure seems like you deserve it

kristaw says to (17:03): he says i will never regain them so i will have to live with it

Lisa Roney says to (17:04): I’m sorry about the hypoglycemic unawareness, but do you trust this doctor?

kristaw says to (17:04): he is the only one available he is a cold fish but he is very talented

sixuntilme says to (17:04): Have you ever given thought to taking a pump vacation?

sstrumello says (17:04): Lisa, is yours one of the pumps that has the built-in continuous glucose sensors?

kristaw says to (17:05): thanks for your concern it sure has almost broken up my marriage

kristaw says to (17:05): he will okay the CGMS though

Lisa Roney says to (17:05): I’ve had different doctors, and it can really make a difference. Sorry he’s the only one available. That puts you in a spot. And I’m sure it’s hard on your marriage. Same with my friend in Massachusetts. I think the pump saved his marriage.

kristaw says to (17:05): he says he is worried about infection in the site

kristaw says to (17:06): we celebrated our 16th tonight

Lisa Roney says to (17:06): Um, no–now the insurance company would never pay for one of the continuous glucose monitoring systems. So, I’ve never tried that.

Lloyd says to (17:06): I use Neosporin at the site

kristaw says to (17:06): i am fighting with mine now

sstrumello says to kristaw (17:06): The risk of infections is worse when your blood glucose levels are not under control

Lisa Roney says to (17:07): There’s no need to worry about infection if your blood sugars are not wildly crazy and you change the site regularly. I don’t even wipe the sites down with alcohol.

kristaw says to (17:07): i know i tried everything to try and get him to change his mind and i left there crying because he would not listen

Lisa Roney says to (17:07): Should we write him some letters?

kristaw says to (17:07): what do you mean?

Lisa Roney says to (17:07): Oh, I just always want to do something. I just meant that we could send him testimonials.

kristaw says to (17:08): you would do that for me?

Lisa Roney says to (17:08): Yup.

sixuntilme says to Lisa Roney (17:08): Kristaw, I’m sure there are plenty of people here who would do the same. Just tell us where to send it!

AllisonBlass says to (17:08): That actually could work. We could probably get the whole O.C. to do it!

kristaw says to (17:08): i am not sure that would help but that is very kind of you and i would not like to burden you

AllisonBlass says to (17:09): There’s nothing like the pressure of a hundred angry diabetics to sway a doctor’s opinion!

sstrumello says (17:09): Its not a burden, its actually well-documented in the medical journals

Lisa Roney says to (17:09): It wouldn’t take any of us long, and–just think–if he’s denying it to you, he probably is denying it to lots of people. He probably won’t care, but it’s worth a try.

kristaw says to (17:09): he had one very angry one and that did nothing for him. he is a very cold doc

kristaw says to (17:09): he is an advocate for pumping

kristaw says to (17:09): which makes me really mad

kristaw says to (17:09): that he will not do it for me

Lisa Roney says to (17:10): I’m sorry. Keep working on him.

kristaw says to (17:10): thanks, you are very kind

sstrumello says (17:10): Another alternative … perhaps another doctor would do it for you … I’ve heard stories that some people have had their gynecologist (sp?) do it for them!

kristaw says to (17:11): what has happened to the bed side manner of these docs?

kristaw says to (17:11): that would really make him mad

Lisa Roney says to (17:11): I used to use regular/humalog and ultralente, but now there’s a better long-acting basal insulin, right?

sixuntilme says to Lisa Roney (17:11): Good ol’ Lantus.

kristaw says to (17:11): i am on lantus and novolog

Lisa Roney says to (17:11): Is lantus really better than ultralente?

AllisonBlass says to (17:11): I never used Ultralente, but I like Lantus.

kristaw says to (17:12): but i split the dose 2 times a day instead of one because the lows were killing me

sstrumello says (17:12): Less we forget it, there’s also Levemir. I personally find NPH works great for my needs.

AllisonBlass says to (17:12): Scott, then I probably shouldn’t tell you that Christine and I want to write a top 10 list why NPH should be illegal.

AllisonBlass says to (17:13): Out of all the insulins to be taken off the market, *that* one should.

sstrumello says to AllisonBlass (17:13): It probably will be taken off the market before too long, but because its no longer covered by patents!

Lisa Roney says to (17:12): Anyway, if it’s any comfort, I actually met a young woman recently who had tried the pump, didn’t like it, and went back to shots.

sstrumello says to Lisa Roney (17:13): I’m actually a former pumper myself, but I think that no one should be denied access to a pump if they want one

Lisa Roney says to (17:13): Why did you go off the pump?

sstrumello says to Lisa Roney (17:15): A variety of reasons … I already had good control with MDI, and I couldn’t get my basals low enough (the old model pumps had higher units per hour doses … the Minimed 507/508 could only go as low as 1 unit per hour, whereas mine went 0.5 units per hour

sixuntilme says to (17:12): I used UltraLente for many years before I switched to Lantus (which was the precursor to my pump).

kristaw says to (17:12): i was on humulin n and r for 17 years

AllisonBlass says to (17:13): I also just went off the pump.

AllisonBlass says to (17:13): Kind of.

Lisa Roney says to (17:13): I took NPH for a long time, when I was on two shots a day. Then I went to three a day, with ultralente.

AllisonBlass says to (17:13): Not really.

AllisonBlass says to (17:13): But… kind of…

kristaw says to (17:13): the cost is higher though

AllisonBlass says to (17:13): Seven years of not wearing a dress.

AllisonBlass says to (17:14): Okay, that was mostly a joke, but basically I was tired of wearing it.

Lisa Roney says to (17:14): Ah, yes. Those little elastic leg thingys don’t work very well.

kristaw says to (17:14): monthly

Lisa Roney says to (17:14): I do get tired of rolling over on it in bed.

kristaw says to (17:14): they have pj holders they said

kristaw says to (17:15): i would love the chance to be able to do that

AllisonBlass says to (17:15): I really love the pump, and I plan to go back to it. I use the pump to calculate and bolus, but I don’t wear it (except for right now… it’s left on from lunch).

sixuntilme says to (17:15): My cat ate through the tubing once, but that’s not exactly a shock.

sstrumello says to sixuntilme (17:16): My cat did too!

sixuntilme says to sstrumello (17:16): I would love to see Phyllis and Siah have at it. {smile_smiley}

sstrumello says to sixuntilme (private) (17:17): LOL … phyllis would probably hide. she’s not very social with other cats!

AllisonBlass says to (17:16): Emma ate through my tubing twice before I learned to just toss her off my lap.

Lisa Roney says to (17:16): You know, my cats never bother the tubing.

AllisonBlass says to (17:15): Lisa, ohmygosh, I had no idea how much I didn’t like wearing the pump until my first night without it! It was amazing!

Lisa Roney says to (17:15): So you take long-acting insulin, too?

AllisonBlass says to (17:15): Lantus and the pump.

AllisonBlass says to (17:15): I like to make things complicated for myself. Keeps life interesting. 😉

Lisa Roney says to (17:16): Wow. Fascinating. I’m dense, but I never thought of that.

sixuntilme says to (17:16): Lisa, do you have plans for another book?

Lisa Roney says to (17:17): Oh, I write a lot, and I have been working on various book projects and proposals in the last few years, but nothing has come to fruition, only short pieces in literary magazines.

kristaw says to (17:17): i would never have the courage to do that

sixuntilme says to (17:18:) Are you edging less towards diabetes-related topics?

Lisa Roney says to (17:19): The topics that I”ve been working on are less directly related to diabetes, but still are mostly about bodies, health, and our physical existence in the world.

Lisa Roney says to (17:18): I just proposed a book about learning to cycle in mid-life, and the relationship of exercise to my physical and spiritual health, but no one bought it. Sigh.

sixuntilme says to (17:18): Yet.

sstrumello says to Lisa Roney (17:18): What have you been up to on the diabetes front … you did a walk or bike ride a few years ago, didn’t you? Anything else exciting, or does time permit?

Lisa Roney says to (17:19): Oh, in February, I did a 53-mile charity ride for the ADA. It was my first such event, and I had a great time.

kristaw says to (17:19): i wouldn’t even know where to begin

AllisonBlass says to (17:19): Lisa, have you ever thought about blogging?

kristaw says to (17:20): how do we keep in touch with what you are doing?

AllisonBlass says to (17:20): All the cool people are doing it.

Lisa Roney says to (17:20): I have indeed thought about blogging. I guess I just get afraid that the time would eat me up. Maybe post-tenure.

AllisonBlass says to (17:20): Ah yes. The time.

AllisonBlass says to (17:20): Many a college paper was written the night before it was due because of blogging.

sstrumello says to Lisa Roney (17:20): We now have over 180 diabetes bloggers … Allison has the latest count!

sixuntilme says to (17:20): It’s not time consuming in the slightest. (Does sarcasm transmit appropriately over the chat?)

sixuntilme says to (17:20): 😉

AllisonBlass says to (17:20): Actually I think I have quite a few missing from my list…. but if I had to wager a guess I would say 210.

Lisa Roney says to (17:21): If I blogged now, tenure committees might interpret that as “wasting time.” They are pretty narrow-minded.

sstrumello says (17:21): Urgh!!

sixuntilme says to (17:21): There have been a number of medical bloggers who have been “closed down” by their employers.

sixuntilme says to (17:21): Do you think your university would have an issue with you blogging, if you ever decided to take the leap?

AllisonBlass says to (17:22): Luckily I started blogging before I started working, so I will just make sure that my employer knows I blog so I won’t waste my time.

kristaw says to (17:22): with you being an advocate for diabetes it shouldn’t harm you at all

Lisa Roney says to (17:22): It’s in some ways a frustrating world. Yes, I’ve also been told that if I had a blog, the University would automatically assume that I might criticize it. That would never be my intention, but there’s a nervousness about TMI.

sstrumello says to Lisa Roney (17:22): You could blog anonymously {smile_smiley}

kristaw says to (17:22): good idea

AllisonBlass says to (17:22): Wouldn’t that kind of defeat the purpose of her blogging?

Lisa Roney says to (17:23): I could. There’s an idea. But I have all kinds of grand plans for after tenure.

sstrumello says (17:23): We have a few anonymous bloggers

Lisa Roney says to (17:23): Assuming I get it, of course.

AllisonBlass says to (17:23): Yeah, but none of them are famous authors…

sixuntilme says to (17:23): Not necessarily. The “therapeutic” effects of blogging happen whether you blog with your name or not.

Lisa Roney says to (17:23): Blush.

kristaw says to (17:23): it was great of you to spend the time with us this evening

AllisonBlass says to (17:24): I just meant as far as people knowing it was the same person who wrote Sweet Invisible Body – I didn’t mean that blogging was only good if your name is attached to it.

Lisa Roney says to (17:24): Oh, really, it is just fun for me. I would do it all the time if I didn’t think that I should be writing “publishable articles” every second of the day.

sixuntilme says to (17:24): So do people assume that because you wrote a book about diabetes that you have “all the answers”?

Lisa Roney says to (17:25): Nope. I’ve never had anyone assume I had all the answers. I’ve had a few tell me I was terribly wrong about everything!

Lisa Roney says to (17:25): Of course, I’ve had others write me their thanks, too, for finally “telling the truth.”

sstrumello says (17:25): Someone always has the answers, usually they aren’t even people with diabetes!

gina says to (17:26): i have all the answers

sixuntilme says to (17:26): Ha! That’s very true, Scott.

gina says to (17:26): what do you want to know lol

sixuntilme says to (17:26): Answers? Cripes, I barely know the questions.

gina says to (17:27): i know those too

gina says to (17:27): lmao

gina says to (17:27): JK

Kristaw says to (17:25): the day you were diagnosed how did you deal with it?

Lisa Roney says to (17:26): Um… I was eleven when I was diagnosed. And I was on crutches after a broken ankle in a horseback riding accident. I remember feeling sick. I remember eating chocolate after the doctor called. But not much else.

Lisa Roney says to (17:26): So, what are the answers?!

kristaw says to (17:26): that must have been difficult

Lisa Roney says to (17:27): Well, what do I want to know? When I should take it easy and when I should push on…

Lisa Roney says to (17:27): Whether I’m too lazy or too driven…

AllisonBlass says to (17:27): My dad once told me that he could tell me the meaning of life but that he wasn’t going to. And I asked him why, and he said, “Because you wouldn’t believe me.” I kind of think that’s the same way with diabetes.

sstrumello says to Lisa Roney (17:27): How did you go about getting your book published? I mean, what was involved?

Lisa Roney says to (17:28): I was very lucky. (Thus, I only feel that my past three years of publishing tough times is balance in the world.) I had a professor in my MFA program who recommended me to his agent, and one of her very young assistants was just starting to handle a few clients on her own, so she asked me for some work. I sent a short piece on diabetes, and she sent me a book on how to write a proposal. Then she managed to get me a book contract.

Lisa Roney says to (17:30): It all happened very fast, and felt a little bit like a dream. I had about a year to write the book, and I worked on it every day.

Lisa Roney says to (17:31): Professionally, that year was the happiest of my life–so far!

sstrumello says (17:29): That’s great … of course, nowadays, electronic publishing is an alternative … thus, blogs!

Lisa Roney says to (17:30): Yes, I probably would have done something like that if it had been available then.

sixuntilme says to (17:30): But there’s nothing quite like a book.

Lisa Roney says to (17:32): Of course, some of it was hard to write–like the notorious chapter about my exes. I cried a lot those weeks.

sixuntilme says to tgneill (17:32): That must have been difficult.

Lisa Roney says to (17:33): Less so than living through stuff!

sixuntilme says to (17:33): Did you show your manuscript to any family or friends as you wrote?

Lisa Roney says to (17:33): And it was cathartic, too, like blogging is.

kristaw says to (17:33): kind of like opening old wounds

kristaw says to (17:33): diabetes is killer on the love life

kristaw says to (17:33): lol

sstrumello says (17:34): LOL

Lisa Roney says to (17:34): I showed the manuscript to a couple of writer friends as I went, and sent chunks to my mother. Then there was the Thanksgiving when my father, his wife, my brother, his wife, and my step-grandmother all read it through. Scary, but I survived.

sstrumello says to Lisa Roney (17:35): Would you say that the publishing industry has changed since your book, more focus on bestsellers, etc.?

Lisa Roney says to (17:36): I don’t really know that much about the publishing industry. My mentors who have been around a long time seem to think that it’s just getting increasingly strained. Even my agent, who represents “literary” writers, cares most about selling books, of course

kristaw says to (17:35): my in-laws are always telling me I shouldn’t even be on insulin and my doc doesn’t know what he is doing

tgneill says to Lisa Roney (17:35): My mom’s always sending me links to people who did the whole stem cell thing.

Lisa Roney says to (17:36): Oh, what do you think of the stem cell thing? How many people have actually done that now?

sstrumello says to Lisa Roney (17:37): I think just 14, in Brazil

sixuntilme says to (17:37): The stem cell thing is one of those “too tangled in politics and religion and money” for me to hope seriously for. I just watch the newswires and keep some hope tucked away.

Lisa Roney says to (17:37): How is it working out? Sorry–I haven’t followed that story in a while.

sstrumello says (17:38): That just happened about a month ago. There are islet transplants which continue … I think several hundred have done that, but few remain insulin independent over time.

kristaw says to (17:37): did you ever have a time where you just wanted to quit and not finish

Lisa Roney says to (17:38): Krista you mean quit the book and not finish it? No. I wanted to finish it always. And that kept me going.

kristaw says to (17:38): that is great

kristaw says to (17:39): i read about a lady who had a pancreas transplant and then got to decrease the amount of medicine but then eventually had to increase again

Lisa Roney says to (17:40): I feel like transplants are still scary, and I hope that when Deb Butterfield reschedules, I’ll be able to participate. I would love to hear more about her experience. My one friend who had a kidney transplant (not diabetic) had it fail and is back on dial

sstrumello says (17:41): I’ll e-mail you when I confirm a reschedule date with Deb … I’m trading voicemail with her now!

Lisa Roney says to (17:42): I remember her book with fascination–I felt like we had so much in common, but so many different experiences, too.

sstrumello says (17:42): Its strange, because in your book, and Deb’s, I think many people feel they’ve walked in the same shoes for some of the experiences!

Lisa Roney says to (17:43): I would love to know from the others online what resonated in my book, what you found surprising or different for you, …? We are all, different, after all.

sstrumello says (17:44): Personally, I found the quote about hypos resonated … something like “these memories haunt me and shame me” … for some reason, we feel like we must apologize for a less-than-perfect treatment!

sixuntilme says to (17:44): Your book was the first one I ever found that was written by someone who had diabetes. You were like all my diabetes camp pals, brought to life. And knowing you were out there, writing and surviving and living a Real Life, meant so much to me.

sixuntilme says to (17:44): It still does.

Lisa Roney says to (17:45): Thanks… I still find it astounding that so many people don’t think diabetes is interesting …

Lisa Roney says to (17:46): One of my ideas for a blog was to share one with some other women I know who have different “challenges” in life–the kidney patient, a friend who has had breast cancer, and one who has a drinking problem–and to talk about all these various things

Lisa Roney says to (17:46): comparatively.

Lisa Roney says to (17:46): It’s awful to admit, but I still get jealous of all the attention that breast cancer gets.

sixuntilme says to (17:47): Our lives don’t seem in as immediate peril as people with cancer. I think that’s why we get the brush off.

Lisa Roney says to (17:47): Agreed. The medical world is especially crisis-oriented.

sixuntilme says to (17:47): Or the, “But you don’t look sick, therefore you must be fine,” bit.

kristaw says to (17:48): Yes, but it is the silent killer

sixuntilme says to (17:48): But they don’t realize that crisis can, and does, hit diabetics.

Lisa Roney says to (17:48): And it’s not that I’d rather have breast cancer, by any means.

sixuntilme says to (17:48): It’s almost as though they need to see someone pass out in front of them in order to realize, “Hey, that diabetes. It’s trouble!”

sstrumello says (17:48): I also think that people underestimate what diabetes treatment is all about, its just an injection and thats it. Its much more complicated!

kristaw says to (17:48): we need more funding

Lisa Roney says to (17:48): Yes–another reason I wrote my book was to explain that. Only the people who read it mostly already knew!

sixuntilme says to (17:49): I’ve passed your book on to several friends, family members, and to anyone I’ve dated.

kristaw says to (17:49): it would be great for family members

sixuntilme says to (17:49): It speaks to people when I can’t or don’t have the energy to explain it all.

tgneill says to (17:49): Isn’t there too much money to be made by drug companies while there isn’t a cure available, be it diabetes, cancer, etc.?

Lisa Roney says to (17:49): Yes, TG (?), I think that we are the cash cow of the pharma industry.

sstrumello says (17:49): They think Exubera is the answer to all our problems! If only it was that easy!

sstrumello says (17:51): Of course, I laugh that Exubera has done poorly in the market so far … perhaps I shouldn’t find it so amusing!

sixuntilme says to (17:49): Right, because we live for a LONG time on all the drugs they charge us for.

sixuntilme says to (17:50): Someone once called diabetes “the only fatal disease you can live with.”

Lisa Roney says to (17:50): There was a great article in Harper’s a few years ago about this.

Lisa Roney says to (17:50): It even noted the irony of the fast food industry and the pharma industry both being so profitable and working at cross purposes.

AllisonBlass says to (17:50): Lisa, did you read Cheating Destiny?

Lisa Roney says to (17:51): No. Is that a recommendation?

AllisonBlass says to (17:51): YES!

AllisonBlass says to (17:51): Sorry….

AllisonBlass says to (17:51): It’s by a former Boston Globe/Wash. Post journalist who has type 1.

sstrumello says (17:51): We did a chat with the author, James Hirsch a few weeks ago!

Lisa Roney says to (17:51): Oh, was that when I was in Utah?

sstrumello says to Lisa Roney (17:52): It was in early May

Lisa Roney says to (17:52): Oh, during the insanity of finals.

AllisonBlass says to (17:51): Yeah, Jim Hirsch is the author.

AllisonBlass says to (17:51): His brother also has type 1 and is an endo at Univ. of WA.

AllisonBlass says to (17:52): It’s basically about healthcare in America and diabetes research, but while he wrote it, his 3-year-old son was diagnosed with it, so there’s also a personal aspect.

Lisa Roney says to (17:52): It sounds great. I will definitely look it up.

kristaw says to (17:51): i wasn’t here yet

AllisonBlass says to (17:52): So what we’re talking about right now.

sstrumello says (17:53): While I’m on the topic, what are your thoughts regarding Exubera, Lisa?

Lisa Roney says to (17:53): I don’t know Exubera, but my doc tried to get me on Symlin last year …

kristaw says to (17:54): is that the inhaled insulin

Lisa Roney says to (17:54): Has anyone tried Symlin?

kristaw says to (17:54): never heard of it

AllisonBlass says to (17:55): I have.

sstrumello says (17:55): My endo is only lukewarm to the idea of Symlin … I gave him a few articles to read, and he said he hadn’t seen them.

Lisa Roney says to (17:55): It’s another injectible hormone that basically works like an appetite suppressant. You take it before every meal and it makes you feel full. Did you like it Allison?

AllisonBlass says to (17:55): No, I didn’t actually. It didn’t react very well in my body apparently.

Lisa Roney says to (17:56): It made me feel sick, and although I’d love to lose a few pounds, I found it problematic.

AllisonBlass says to (17:56): I talked to my uncle about it, who works for them, and he said my experience is pretty unique.

AllisonBlass says to (17:56): It was painful for me. Like some people complain about Lantus stinging a lot, it really hurt for me.

sixuntilme says to (17:56): I know some people at my office have used it, but it made their GI tracts distressed.

Lisa Roney says to (17:56): Well, I wonder with all the FDA approval scandals. I don’t really want to take anything anymore unless it’s been on the market ten years!

AllisonBlass says to (17:56): And I could take the same dosage, and it would act differently. Sometimes it would keep my BG stable and sometimes I would still go high or low.

Lisa Roney says to (17:57): It just made me want to puke all the time.

sstrumello says to Lisa Roney (17:57): It seems like juggling insulin plus another hormone … as if one wasn’t enough? However, I’ve spoken to a few people who said it has worked wonders for them. Reduced their total daily insulin dosage, and they lost weight!

AllisonBlass says to (17:57): Scott, I agree! That’s why I went off it. I was like “If this isn’t a shot that doesn’t require thinking, I’m out.”

kristaw says to (17:57): i need help in that department

Lisa Roney says to (17:57): Yes, I had a couple of terrible lows with hypoglycemic unawareness like I hadn’t experience in years, and the doc said it was a “coincidence.”

AllisonBlass says to (17:58): I’ve gone on and off it for about a year, and I just couldn’t handle it. It was also hard with being in college… I would leave it at home a lot.

sstrumello says (18:01): One guy told me that since taking Symlin, he has actually had fewer lows because he uses less insulin overall. Interesting perspective.

sstrumello says (17:59): Lisa, I’d like to thank you for spending time with us this evening. Its now 10:00 PM, so you’re free to sign out, but you’re more than welcome to stick around a while longer if you’d like!

kristaw says to (17:59): That went quick!

Lisa Roney says to (17:59): I’ll hang around as long as my boyfriend has his nose in his book… Then maybe I should go talk with him, since he came over to make sure the technology went okay for me.

AllisonBlass says to (17:59): I definitely recommend people try Symlin, because I know it works well with some people, but that’s not necessarily going to work for everyone.

Lisa Roney says to (17:59): I thought the pump, the bg monitor, the hypothyroid pills were enough to remember. Adding another whole thing was a burden.

kristaw says to (17:59): i have a watch that reminds me to check my blood sugar and eat

kristaw says to (17:59): it has 12 alarms on it and it is for medical

sixuntilme says to (18:00): I had no desire to take shots while pumping. Seemed like extra chaos that I wasn’t prepared to manage.

Lisa Roney says to (18:00): Wow. That’s a lot of beeping.

kristaw says to (18:00): only when you set them

Lisa Roney says to (18:00): Yes, about shots while pumping. Didn’t I just get rid of those?

tgneill says to (18:00): The best is when your pump alarm goes off and someone says “Who’s cell phone is that?”

sixuntilme says to (18:01): And you say, “My pancreas’s.”

AllisonBlass says to (18:01): That happened to me in high school. My chem teacher turned around and yelled “turn it off!” because he thought it was someone texting on their phone.

kristaw says to (18:01): maybe i should try that

Lisa Roney says to (18:01): It just points out that you really have to find a doctor that will work with you individually, as one size does not fit all.

AllisonBlass says to (18:01): Then I realized it was me, and when I told him it was my pump, he said, “Oh, you don’t have to turn that off.”

kristaw says to (18:01): how do you find a nice one

sstrumello says (18:02): My pump alarm went off once in an airport, and the security people rushed over to me and thought I was a terrorist or something! Embarrassing.

Lisa Roney says to (18:02): Don’t be afraid to change.

kristaw says to (18:02): not possible no one else is available

AllisonBlass says to (18:02): I get to find a new one this summer…. ::shivers:: {fear_smiley}

Lisa Roney says to (18:02): I’m on my second endo in Orlando. The first one was just not interested.

kristaw says to (18:02): my parents live in florida and they love it

kristaw says to (18:03): they live in punta gorda

Lisa Roney says to (18:03): Florida is strange to me, but there are many nice things about it.

AllisonBlass says to (18:03): Lisa, have you ever been to a CWD conference there?

Lisa Roney says to (18:03): My nickname for Orlando is, excuse my language, Whorelando. Everything is for sale. I say it with a Latina accent.

Lisa Roney says to (18:03): No. Again, I don’t know CWD.

AllisonBlass says to (18:04): <a href=”http://www.childrenwithdiabetes.com”>www.childrenwithdiabetes.com</a>.

AllisonBlass says to (18:04): Check it out.

AllisonBlass says to (18:04): It’s mostly for kids with diabetes, but they have some sessions for adults. And lots of researchers and big-name people speak there.

AllisonBlass says to (18:04): I went last summer. Good times.

sstrumello says to Lisa Roney (18:04): LOL … We are in the early phases of planning a diabetes blogger conference

Lisa Roney says to (18:04): Will do. Sounds like a good connection.

AllisonBlass says to (18:04): Woot woot!

kristaw says to (18:05): there is nothing around here to deal with diabetes

sixuntilme says to (18:05): Kristaw, where are you located?

kristaw says to (18:05): Whitehouse Ohio

AllisonBlass says to (18:05): Scott, I can’t believe I elected to start planning this conference two weeks before moving across the country… I am nuts?!

Lisa Roney says to (18:05): Where are you? Is your endo the only one in the area or the only one in your health care plan?

kristaw says to (18:05): both

Kristaw says to (18:05): near Toledo Ohio

Lisa Roney says to (18:06): Hmmm… Maybe you could drive a bit…? Or just keep at him. But it sounds as though you’ve been seeing him for a long time.

sstrumello says to Lisa Roney (18:06): Ah … healthcare coverage … America’s biggest problem. I’m really looking forward to seeing Michael Moore’s movie Sicko on June 29th!

sixuntilme says to (18:06): It comes out on the 29th?

sixuntilme says to (18:06): I’m so there.

sstrumello says to sixuntilme (18:07): Yes, catch my blog post today!

Lisa Roney says to (18:07): I, too, can’t wait for Sicko. And Krista, I’m sorry you are in a tough spot. It really sounds as though you are not getting the medical support you need.

kristaw says to (18:06): i have severe depression also so i don’t even have any friends left that will go out with me because of my lows

kristaw says to (18:06): i don’t drive because of it

kristaw says to (18:07): the severe lows

Kristaw says to (18:07): lisa how do we keep in contact with you?

kristaw says to (18:07): thanks

sstrumello says to kristaw (18:08): Krista, Allison has a CDE who is 3,000 miles away from her!

AllisonBlass says to (18:08): Indeed I do.

AllisonBlass says to (18:09): But Gary can’t get Krista a pump, unfortunately.

kristaw says to (18:08): i don’t know how to stand up for myself and that is part of the problem

AllisonBlass says to (18:10): Gary is my CDE, not my endo.

Lisa Roney says to (18:08): I’ll check back in. You can also send to my e-mail, though I often get hundreds a day between the University administration, students, and colleagues. So right now I have about 1,000 unanswered ones.

kristaw says to (18:08): what is that if you don’t mind?

Lisa Roney says to (18:09): [email protected]

sstrumello says to Lisa Roney (18:09): Wow … you’re really good about going through your e-mail then!

Lisa Roney says to (18:09): I’m really overwhelmed by my e-mail.

Lisa Roney says to (18:09): Maybe we should all try calling our endos by their first names. Ha ha.

Lisa Roney says to (18:10): Oh, do you ever call your endo by his first name? Really, I love the idea.

tgneill says to (18:10): Oh yeah.

sstrumello says (18:10): Once again, thank you so much for spending time with us this evening Lisa! We’re delighted you were able to join us, and more than welcome to come back any time!

Lisa Roney says to (18:10): No problem. I listen when I can. Take care.

kristaw says to (18:09): i have really enjoyed talking with you and you have listened which is often a problem thanks for that

kristaw says to (18:10): you have been awesome. go gators!!!!!

Lisa Roney says to (18:10): Thanks, and I’ll sign off. I really enjoyed chatting. Take care, everyone.

sixuntilme says to (18:10): Thanks, Lisa!! {smile_smiley}

AllisonBlass says to (18:10): Bye Lisa.

kristaw says to (18:10): same to you lisa bye

tgneill says to (18:11): bye

*** (18:11):Lisa Roney quit the room

kristaw says to (18:11): that was great

*** (18:12):sixuntilme quit the room

sstrumello says (18:12): Thanks everyone for joining us tonite. This was a nice, intimate chat!