[Diabetes-Talk] Pumps and accessibility

Wed Jan 4 00:39:55 UTC 2017

Same here between 7.5 and 8.2  .  

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of d
m gina via Diabetes-Talk
Sent: Tuesday, January 3, 2017 1:37 PM
To: diabetes-talk at nfbnet.org
Cc: d m gina <dmgina at sero.email>
Subject: Re: [Diabetes-Talk] Pumps and accessibility

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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>>>> for
>>>> Diabetes-Talk:

>>> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/bkpollpete
>>> r
>>> %40gma
>>>> il.com

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>>> Diabetes-Talk:

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>>> 5
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>>> 0
>>> laurel
>>> creekmusic.com

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-- 
--Dar
skype: dmgina23
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every saint has a past
every sinner has a future

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