[Diabetes-Talk] Pumps and accessibility
d m gina
dmgina at sero.email
Tue Jan 3 21:36:47 UTC 2017
I rock with the a one c between seven and eight.
Has nothing to do with having child.
Glad you are doing well.
Original message:
> Yes, me too. My A1-Cs were all over the place, despite my trying. Then I
> went on the pump, and they have remained pretty stable and in a good range.
> In 12 years, the highest A1-C I've had is 7.5.
> Off topic, but weirdly, when pregnant, I experience the best A1-Cs ever. Any
> other mommys experience this? With both my pregnancies, I have gotten my
> A1-C way down, usually ending up around 6. Not sure why this is, smile. My
> doctors find it interesting too.
> BTW, seven weeks to go before baby number 2 arrives, smile.
> Bridgit
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> Veronica Elsea via Diabetes-Talk
> Sent: Tuesday, January 03, 2017 12:42 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
> Subject: Re: [Diabetes-Talk] Pumps and accessibility
> At the risk of one of those dreaded one-word replies on a list, Amen! <grin>
> Before going on the pump, I spent my first three years as a type 1 with an
> A1C hovering between 13 and 16. I was already blind before diagnosis. Within
> two month of going on my first pump, I had it down to 7 and I've never
> looked back. For some reason insulin just never seemed to obsorb like it was
> supposed to do. So I'll continue to fight through the current state of pumps
> and do the best I can. And by golly, if sighted people deserve the
> convenience of having the pump figure things out, then so do I. <grin>
> Veronica
> "Guide Dogs, First Hand", Veronica Elsea's classic album is now available on
> iTunes, along with other music from her and from the Guide Dog Glee Club.
> To learn more, visit:
> http://www.laurelcreekmusic.com
> Veronica Elsea, Owner
> Laurel Creek Music Designs
> Santa Cruz, California
> Phone: 831-429-6407
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Tuesday, January 03, 2017 10:33 AM
> To: 'Diabetes Talk for the Blind'
> Cc: Bridgit Kuenning-Pollpeter
> Subject: [Diabetes-Talk] Pumps and accessibility
> While I completely agree with you, Bernie, and it's totally true that no
> pump is fully accessible, I do think the comments made to Jamie were not
> that a blind user can use the pump never requiring sighted assistance, just
> that blind users do use their product, and are experiencing success managing
> their diabetes.
> I will say that the only time I require sighted assistance for my pump (and
> for what it's worth, I'm totally blind) is when adjusting basal rates, and
> that only happens maybe quarterly, and that's based on me. For other
> diabetics, basal adjustments could happen more or less frequently, but for
> me, so far, this is the only assistance I have with my pump.
> Wait, I do prefer to have sighted help filling cartridges. I do it on my own
> if need be, but I do prefer sighted help. I know Veronica fills her
> cartridges on her own though. I will have someone fill about a month's worth
> of cartridges for me at a time though. And for me, a cartridge last about a
> week.
> It's ultimately a personal choice to use a pump or not. Some have found the
> benefits immense, others, not so much. Some start on a pump and eventually
> go off it, not enjoying it as much as they originally thought. For me, the
> pump has given me the best control over my diabetes ever. I've been type 1
> diabetic for 31 years now and using a pump for 12 years. I started using a
> pump after I lost my sight. I love the insulin pump, and it has helped me
> better manage my diabetes. My husband is blind, and I do not have sighted
> assistance whenever I need it. So accessibility is important and crucial for
> me, like most of us. Despite the lack of accessibility that should not be so
> difficult to implement on a pump, I have made it work for several years now
> and I don't often require sighted assistance.
> I know this discussion goes round and round, but I feel like there has to be
> something we can do as a collective to make accessibility in medical devices
> more of an important issue than it is. Not sure what answers exist, and I'm
> sure it will take a lot of hard work, but it seems we need to be more
> proactive as a group to make accessibility in the forefront for
> manufacturers.
> Okay, my rant for the day, grin.
> Bridgit
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> Bernadette Jacobs via Diabetes-Talk
> Sent: Tuesday, January 03, 2017 8:50 AM
> To: Jamie Gurganus <jamielgurganus at gmail.com>
> Cc: Bernadette Jacobs <bernienfb75 at gmail.com>; Diabetes Talk for the Blind
> <diabetes-talk at nfbnet.org>
> Subject: Re: [Diabetes-Talk] Your new president...
> Jamie, my friend.
> Don't let any foolish pump wrap tell you that other blind people are using
> their pumps successfully and independently. There is not one totally
> accessible pump out there! And that's a fact! Even Veronica and Bridget and
> other blind pump you service out here will tell you the very same thing. My
> doctor has been wanting me to use a pump for years and years. Haven't found
> One that's totally and completely accessible yet. My husband agrees with me.
> He tells me the same thing. He says, honey there's not one accessible pump
> out there and I don't want you to go on a pump until there is. We may have
> to bite the bullet at some point, however. And when I do, the first thing I
> will do is post right here. You, my friend, are in touch with the best. So,
> still, don't let anycompany's pump REP Tell you that other blind folks are
> using their products successfully. Because there's not one of us out here
> The can't do something without sighted assistance. And that's a fact. Have a
> great day!!
> Bern
> Sent from my iPhone
>> On Jan 3, 2017, at 8:51 AM, Jamie Gurganus <jamielgurganus at gmail.com>
> wrote:
>> Veronica,
>> I am a new subscriber to this site and found it while searching for
>> other diabetics who are blind and use insulin pumps. Much like you, I
>> have been independently using an insulin pump for 18 years. I am
>> currently using the Accucheck Spirit, but Roche suddenly chose to not
>> sell any of their Accucheck pumps any more. And, like your Cosmo, my
>> Spirit has about a month left before completely shutting down on me.
>> I did visit my Diabetic Educator and looked at the options for pumps.
>> I also decided that the Animas products would be the best, although
>> not
> the perfect solution for me.
>> I also use the Dexcom G5, which my two teenagers help me use. Even
>> though it is inaccessible to me, I need to use it to help me detect my
>> llow blood sugars. I use my iPhone to know what my blood sugar is
>> when it
> alarms me.
>> So, you and I are going to be learning how to use the Vibe together!
>> It will be a true test of how well I can memorize things at my age! I
>> hope that we can keep in touch and share our experiences of how we
>> are conquering our new pumps! The Animas rep assures me that they
>> have other individuals who are blind or visually impaired and
>> successfully using their pumps. However, he could not tell me how I
>> could contact these people. I am hoping to find help through Diabetes
> Talk.
>> Jamie
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>> Behalf Of Bernadette Jacobs via Diabetes-Talk
>> Sent: Tuesday, January 03, 2017 7:15 AM
>> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
>> Cc: Bernadette Jacobs <bernienfb75 at gmail.com>
>> Subject: Re: [Diabetes-Talk] Your new president...
>> Thanks Veronica!!!
>> I certainly have to say, you and Bridgit have both taught me so very much.
>> I can't imagine myself using a KNFB reader for something like that.
>> Although I do love my KNFB reader, it doesn't come without its
>> limitations either. And, believe me I had to practice using it to
>> make it
> work for me.
>> I'm not perfect yet. I can use it to read some of my mail and the kids'
>> notices they bring home in their bookbags.
>> But, I'm not sure I'd attempt to use it fore reading an insulin pump?
>> I think I'd rather have something a bit more fool-proof. I'm not that
>> brave. Especially when my survival is at stake. Scary.
>> Talk soon my friend and thank you so much for your vote of confidence.
>> This means a lot.
>> Bern
>> On 1/2/17, Veronica Elsea via Diabetes-Talk <diabetes-talk at nfbnet.org>
>> wrote:
>>> Bern, I echo the bitter-sweet congratulations. I assure you that we
>>> do not expect you to be Mike. <grin> I look forward to seeing how
>>> this list and organization will grow under your leadership. And yes,
>>> a definite group effort.
>>> I also look forward to seeing what the new technology will do. In the
>>> meantime, I am checking out the current pumps as my beloved Cozmo
>>> finally shrieked out its last system fault alarm. Yikes! Someone here
>>> mentioned awhile back that there was a blind person using an OmniPod
>>> with some sort of app. I found out that he was actually using a KNFB
>>> reader to try and read the screen. I'll probably end up with the
>>> Animas Vibe but I'm struggling to get around that notion of how much
>>> I'm losing compared to what I had.
>>> As for the artificial pancreas, I hope the technology it's based on
>>> is more accurate than what we have now. Eventually it would be nice
>>> to have to interact less with stuff, but I'm not so sure I want to be
>>> in the first round. <grin> Never say never though.
>>> In the meantime, boy do I appreciate having a place to share
>>> knowledge, to vent, to brag, to whine and to help each other. I
>>> really do appreciate all of you and look forward to accomplishing as
>>> much as we
>> can together.
>>> Onward,
>>> onward! Count me in!
>>> Veronica
>>> "Guide Dogs, First Hand", Veronica Elsea's classic album is now
>>> available on iTunes, along with other music from her and from the
>>> Guide Dog Glee Club.
>>> To learn more, visit:
>>> http://www.laurelcreekmusic.com
>>> Veronica Elsea, Owner
>>> Laurel Creek Music Designs
>>> Santa Cruz, California
>>> Phone: 831-429-6407
>>> -----Original Message-----
>>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>>> Behalf Of Bernadette Jacobs via Diabetes-Talk
>>> Sent: Monday, January 02, 2017 8:45 AM
>>> To: Diabetes Talk for the Blind
>>> Cc: Bernadette Jacobs
>>> Subject: Re: [Diabetes-Talk] Your new president...
>>> Oh Bridgit!
>>> Thank you so kindly for your vote of confidence!! You're like a
>>> breath of fresh air!
>>> Only trouble is, for Medicare patients, I think that these things are
>>> so hard, as a matter of fact, too hard to get. You shouldn't have to
>>> go through denials and appeals and denials and appeals. Too bad the
>>> system is so broken!! We should not have to fight this hard to
>>> survive. Just makes me sick!! However, I will be anxious to hear more
>>> about the artificial pancreas. I'm always anxious to hear more when
>>> it comes. Talk very soon.
>>> Bern
>>> Sent from my iPhone
>>>> On Jan 2, 2017, at 9:50 AM, Bridgit Kuenning-Pollpeter via
>>>> Diabetes-Talk
>>> <diabetes-talk at nfbnet.org> wrote:
>>>> Bernie,
>>>> Congrats, even though it's a bittersweet congratulations. You will
>>>> do a fantastic job.
>>>> On a sidenote, speaking of sharing and learning from each other, I
>>>> just
>>> want
>>>> to say that my doctor continues to bring up the artificial pancreas
>>>> and
>>> how
>>>> it will be available on the market within the year to all diabetics.
>>>> He believes this will revolutionize diabetes even more than insulin
>>>> pumps
>>> have.
>>>> He's eager and excited for the technology and for me to have the
>>> opportunity
>>>> to transition to one. Of course, I'm concerned about accessibility,
>>>> but nonetheless, this is exciting news, and I'm sure many of us are
>>>> excited about this technology.
>>>> The device will use a CGM to constantly monitor blood sugars. As it
>>>> does this, it will automatically adjust insulin as needed. Little
>>>> interaction will be necessary for the device.
>>>> More info about this is available online, but as I learn more, I
>>>> will continue to share.
>>>> Happy New Year; may 2017 be fruitful for everyone.
>>>> Bridgit
>>>> -----Original Message-----
>>>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>>>> Behalf Of Bernadette Jacobs via Diabetes-Talk
>>>> Sent: Sunday, January 01, 2017 1:26 PM
>>>> To: diabetes-talk at nfbnet.org
>>>> Cc: Bernadette Jacobs <bernienfb75 at gmail.com>
>>>> Subject: [Diabetes-Talk] Your new president...
>>>> Good Afternoon Everyone!!!
>>>> Happy New Year!!!
>>>> Firstly, I'd like to begin by telling you a little bit about myself
>>>> for those of you who don't know me. I'm aware, however that most of
>>>> you
>> do.
>>> I
>>>> am Bernadette Jacobs, formerly, about 18 years ago, Bernadette
> Krajewski.
>>> I
>>>> have been first vice-president now since, I believe, about 2007.
>>>> Don't hesitate to correct me if somebody out there finds me to be
>>>> wrong. At any rate, I did have a one-year break while Sandy Ryan
>>>> served just last year--2015-2016. Thank you Sandy.
>>>> Since the unfortunate passing of our illustrious and fearless leader
>>>> Mike Freeman's passing, I will do my best to serve you as our
>>>> Diabetes Action Network's president and your list moderator.
>>>> I will warn you. I can't do this all alone, however. I need all of
>>>> you
>>> to
>>>> work with me and teach me as you have done about our conditions for
>>>> the
>>> past
>>>> so many years. Most of what I have learned about my own diabetes,
>>>> I've learned from all of you. You've been so gracious. But that's
>>>> what we're
>>> in
>>>> this thing for. Right???? Helping each other and taking care of
>>>> each other. So, I'd like to say, Welcome home and Happy New Year!!!
>>>> I was diagnosed as a type II diabetic in about March of 1985. This,
>>>> of course, was before the age of "pre-diabetes." I have been
>>>> insulin
>>> dependent
>>>> since 1999 when My husband Bill and I were first married and I
>>>> became pregnant with the baby we lost in miscarriage. I have been a
>>>> member of
>>> the
>>>> Diabetes Action Network, (DAN) since its inception in 1985.
>>>> My mother was a diabetic and I lost my mother to complications of
>>>> diabetes at the tender age of 13. She, herself was only 47. She
>>>> had three heart attacks, the third of which, resulted in her
>>>> passing. I remember it as if were Yesterday. When I came into DAN,
>>>> I told it's then president, Ed Bryant, that my mother was a diabetic
>>>> and died of complications. He gave
>>> me
>>>> that gentle kick in the seat of the pants, "And you are diabetic too..."
>>> Of
>>>> course, he also recognized I was in that old familiar river, "Denial???"
>>> Ed
>>>> Bryant, the gentle man he was, took me under his fatherly wing and
>>>> we
>>> worked
>>>> together up until his passing. Mike came in and we all continued on.
>>>> I must say, that his passing on December 24, shocked and deeply
>>>> saddened me just as it has everyone else.
>>>> Now, everyone, I'd like to take this time to thank you!! For, it's
>>>> all of you who've taught me so much about the conditions that we
>>>> share together.
>>>> Taught me about insulin pumps, complications, and the heartaches
>>>> we've suffered together as well as foo the positive bits of news.
>>>> There are so many of you that I simply can't wait to hear about
>>>> something new you've learned, discovered and/or whatever else. It
>>>> simply warms my heart to the moon and back to hear from you as I
>>>> feel like we're such a great big
>>> family.
>>>> Isn't it wonderful??? I think it's phantabulous!!! SQUEEEEEZE!!!!!
>>>> i DO hope that all of you will continue to write in with all your
>>>> things, both good and bad so that we can all continue to share,
>>>> learn, and work
>>> together.
>>>> I'll miss you if you don't!!
>>>> Until next time, take care and have a great day!!!
>>>> Below, I'll be posting my Email, so that you can write me offlist
>>>> for anything strictly confidential you might need help with. I will
>>>> then
>>> share
>>>> my cell phone with you that we may continue our work together.
>>>> Very Warmly,
>>>> Bernadette M. Jacobs, (Bernie, Bern).
>>>> _______________________________________________
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>>>> Diabetes-Talk:
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>>> laurel
>>> creekmusic.com
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--
--Dar
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